qualitative research in the health sciences methodologies methods and processes

Help & FAQ

Qualitative Research in the Health Sciences: Methodologies, Methods and Processes

Research output : Book/Report › Book › Other › peer-review

There is a growing interest in, and acceptance of, qualitative research approaches in the health science disciplines, both as standalone methodologies and integrated with quantitative designs in mixed methods approaches. This comprehensive text provides deeper knowledge and application of a wide range of methodologies, methods and processes, enabling readers to develop their qualitative research skills.

Divided into two parts, focusing first on methodologies and then on methods and processes, the text also includes revision of essential aspects of quantitative research as they apply to mixed methods research and a discussion of the uptake of qualitative research in the health sciences.

The methodologies covered include: Grounded Theory; Historical Research; Ethnography; Phenomenology; Narrative Inquiry; Case Study Research; Critical Ethnography; Action Research and Mixed Methods.

The methods and processes covered include: The methods and processes covered include: Interviewing and Analysis; Group Work and Analysis; Narrative Analysis; Discourse Analysis.

Using accessible language to help extend readers’ practical research skills, this is a thorough and reliable text to guide advanced students and researchers from all health-related disciplines - including nursing, midwifery, public health and physiotherapy - to the best use of qualitative research.

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.4324/9780203777176

Follow the authors

Image Unavailable

To view this video download Flash Player

Qualitative Research in the Health Sciences: Methodologies, Methods and Processes 1st Edition

Purchase options and add-ons.

The methodologies covered include: Grounded Theory; Historical Research; Ethnography; Phenomenology; Narrative Inquiry; Case Study Research; Critical Ethnography; Action Research and Mixed Methods.

The methods and processes covered include: Interviewing and Analysis; Group Work and Analysis; Narrative Analysis; Discourse Analysis.

Using accessible language to help extend readers’ practical research skills, this is a thorough and reliable text to guide advanced students and researchers from all health-related disciplines – including nursing, midwifery, public health and physiotherapy – to the best use of qualitative research.

ISBN-10 0415682606
ISBN-13 978-0415682602
Edition 1st
Publisher Routledge
Publication date June 21, 2013
Language English
Dimensions 7.25 x 1 x 10.25 inches
Print length 312 pages
See all details

Amazon First Reads | Editors' picks at exclusive prices

Editorial Reviews

'...a well-written guide to the basics of qualitative research methodologies and the process of data collection and analysis. Those wanting a nuts-and-bolts overview of qualitative research and how it can be utilized in the health sciences will be pleased with this logical, clear introduction to the subject. Summing Up: Recommended. All academic and professional libraries.' – C.A. Collins, in CHOICE, March 2014

'A useful guide for those new to research, as well as clinical and academic staff looking to develop or refresh their knowledge of qualitative methodologies.' – Nursing Standard

About the Author

Bev Taylor is Professor of Nursing in the School of Nursing and Midwifery, Monash University, Australia.

Karen Francis is Professor and Head of the School of Nursing, Midwifery & Indigenous Health, Charles Sturt University, Australia.

Product details

Publisher ‏ : ‎ Routledge; 1st edition (June 21, 2013)
Language ‏ : ‎ English
Hardcover ‏ : ‎ 312 pages
ISBN-10 ‏ : ‎ 0415682606
ISBN-13 ‏ : ‎ 978-0415682602
Item Weight ‏ : ‎ 1.57 pounds
Dimensions ‏ : ‎ 7.25 x 1 x 10.25 inches
#750 in Nursing Research & Theory (Books)
#4,311 in Health Care Delivery (Books)

About the authors

Karen francis.

Discover more of the author’s books, see similar authors, read author blogs and more

Beverley J. Taylor

Customer reviews.

Customer Reviews, including Product Star Ratings help customers to learn more about the product and decide whether it is the right product for them.

To calculate the overall star rating and percentage breakdown by star, we don’t use a simple average. Instead, our system considers things like how recent a review is and if the reviewer bought the item on Amazon. It also analyzed reviews to verify trustworthiness.

Sort reviews by Top reviews Most recent Top reviews

Top review from the United States

There was a problem filtering reviews right now. please try again later..

Amazon Newsletter
About Amazon
Accessibility
Sustainability
Press Center
Investor Relations
Amazon Devices
Amazon Science
Sell on Amazon
Sell apps on Amazon
Supply to Amazon
Protect & Build Your Brand
Become an Affiliate
Become a Delivery Driver
Start a Package Delivery Business
Advertise Your Products
Self-Publish with Us
Become an Amazon Hub Partner
› See More Ways to Make Money
Amazon Visa
Amazon Store Card
Amazon Secured Card
Amazon Business Card
Shop with Points
Credit Card Marketplace
Reload Your Balance
Amazon Currency Converter
Your Account
Your Orders
Shipping Rates & Policies
Amazon Prime
Returns & Replacements
Manage Your Content and Devices
Recalls and Product Safety Alerts
Conditions of Use
Privacy Notice
Consumer Health Data Privacy Disclosure
Your Ads Privacy Choices

Qualitative research in the health sciences: Methodologies, methods and processes

Science and Health
Monash University

Research output : Book/Report › Textbook/Reference book › peer-review

Fingerprint

Health Sciences Keyphrases 100%
Science Methods Keyphrases 100%
Methodology of Science Keyphrases 100%
Process of Science Keyphrases 100%
Health Science Social Sciences 100%
Methodology Social Sciences 100%
Process Social Sciences 100%
Qualitative Research Social Sciences 100%

T1 - Qualitative research in the health sciences

T2 - Methodologies, methods and processes

AU - Taylor, Beverley

AU - Francis, Karen

N1 - Includes bibliographical references and index

N2 - There is a growing interest in, and acceptance of, qualitative research approaches in the health science disciplines, both as standalone methodologies and integrated with quantitative designs in mixed methods approaches. This comprehensive text provides deeper knowledge and application of a wide range of methodologies, methods and processes, enabling readers to develop their qualitative research skills.Divided into two parts, focusing first on methodologies and then on methods and processes, the text also includes revision of essential aspects of quantitative research as they apply to mixed methods research and a discussion of the uptake of qualitative research in the health sciences.The methodologies covered include: Grounded Theory; Historical Research; Ethnography; Phenomenology; Narrative Inquiry; Case Study Research; Critical Ethnography; Action Research and Mixed Methods.The methods and processes covered include: Interviewing and Analysis; Group Work and Analysis; Narrative Analysis; Discourse Analysis.Using accessible language to help extend readers' practical research skills, this is a thorough and reliable text to guide advanced students and researchers from all health-related disciplines - including nursing, midwifery, public health and physiotherapy - to the best use of qualitative research.

AB - There is a growing interest in, and acceptance of, qualitative research approaches in the health science disciplines, both as standalone methodologies and integrated with quantitative designs in mixed methods approaches. This comprehensive text provides deeper knowledge and application of a wide range of methodologies, methods and processes, enabling readers to develop their qualitative research skills.Divided into two parts, focusing first on methodologies and then on methods and processes, the text also includes revision of essential aspects of quantitative research as they apply to mixed methods research and a discussion of the uptake of qualitative research in the health sciences.The methodologies covered include: Grounded Theory; Historical Research; Ethnography; Phenomenology; Narrative Inquiry; Case Study Research; Critical Ethnography; Action Research and Mixed Methods.The methods and processes covered include: Interviewing and Analysis; Group Work and Analysis; Narrative Analysis; Discourse Analysis.Using accessible language to help extend readers' practical research skills, this is a thorough and reliable text to guide advanced students and researchers from all health-related disciplines - including nursing, midwifery, public health and physiotherapy - to the best use of qualitative research.

KW - Action Research and Mixed Methods

KW - Case Study Research

KW - Critical Ethnography

KW - Ethnography

KW - Grounded Theory

KW - Historical Research

KW - Narrative Inquiry

KW - Phenomenology

KW - Medical sciences

KW - Qualitative research

M3 - Textbook/Reference book

SN - 9780415682619

SN - 9780415682602

BT - Qualitative research in the health sciences

PB - Routledge

CY - United Kingdom

Even more »

Account Options

Try the new Google Books
Advanced Book Search

Get this book in print

Barnes&Noble.com
Books-A-Million
All sellers »

Other editions - View all

Common terms and phrases, about the author (2013).

Bev Taylor is Professor of Nursing in the School of Nursing and Midwifery, Monash University, Australia.

Karen Francis is Professor and Head of the School of Nursing, Midwifery & Indigenous Health, Charles Sturt University, Australia.

Bibliographic information

Log in using your username and password

Search More Search for this keyword Advanced search
Latest content
Supplements
BMJ Journals More You are viewing from: Google Indexer

http://orcid.org/0000-0002-5849-7131 Marco J Haenssgen 1 ,
Elizabeth M Elliott 2 ,
Sysavanh Phommachanh 3 ,
Sylivanh Phomkong 4 ,
Sengchanh Kounnavong 5 ,
http://orcid.org/0000-0003-1770-4381 Shogo Kubota 2
1 Department of Social Science and Development , Chiang Mai University , Chiang Mai , Thailand
2 World Health Organization Regional Office for the Western Pacific , Manila , Philippines
3 University of Health Sciences , Vientiane , Laos
4 World Health Organization Representative Office , Vientiane , Lao People's Democratic Republic
5 Lao Tropical and Public Health Institute , Vientiane , Lao People's Democratic Republic
Correspondence to Dr Marco J Haenssgen; marco.haenssgen{at}cmu.ac.th

Background Global health foregrounds trust as a key requirement for the achievement of international health initiatives, but it remains an elusive concept that is often mobilised without consideration of its dimensions, drivers and downstream behavioural consequences. This paper aims to contribute to the conceptual development and measurement of ‘patient trust in primary healthcare’ from the lower middle-income country perspective of rural Lao PDR.

Methods A two-phase mixed-method research design was implemented between January 2021 and April 2023. Phase 1 involved exploratory qualitative research to understand the local expressions and dimensions of patient trust in primary healthcare, with 25 semistructured interviews and 17 focus group discussions (120 participants) in eight villages in Bokeo Province. Phase 2 involved explanatory research to assess patterns of trust systematically at scale in 14 villages across four provinces, wherein 26 cognitive interviews, 17 expert interviews and non-participant community observations informed a community census survey with 1838 participants. We analysed qualitative data through content-oriented thematic analysis and developed an 8-item trust scale on that basis. Quantitative data analysis used descriptive statistical and regression analysis.

Results We found that trust in primary healthcare is readily understood and intrinsically valuable in rural Lao PDR. Key dimensions included communication, respectful care, relationship, fairness, integrity, reputation, assurance of treatment and competence. The survey highlighted that reputation, competence, integrity and respectful care had the lowest trust scores. Health centre operations predicted the local expressions of trust. The behavioural consequences of trust were limited to a positive statistical association with antenatal care uptake among pregnant women but outweighed by alternative measures that also captured the availability of healthcare facilities.

Conclusions Overall, the development of our quantitative trust scale offers a process model for future researchers. We conclude that interpersonal, institutional and service-related trust require more explicit recognition in health system development and integration into health policy.

Health systems
Qualitative study
Other study design
Community-based survey

Data availability statement

Data are available upon reasonable request. The datasets generated and analysed during the current study are not publicly available to protect the anonymity of our respondents but are available from the corresponding author on reasonable request.

This is an open access article distributed under the terms of the Creative Commons Attribution IGO License ( CC BY 3.0 IGO ), which permits use, distribution,and reproduction in any medium, provided the original work is properly cited. In any reproduction of this article there should not be any suggestion that WHO or this article endorse any specific organization or products. The use of the WHO logo is not permitted. This notice should be preserved along with the article’s original URL.

https://doi.org/10.1136/bmjgh-2023-014640

Statistics from Altmetric.com

Request permissions.

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

WHAT IS ALREADY KNOWN ON THIS TOPIC

Global health research and policy foreground concerns about waning population trust in healthcare and science.

Trust is a multidimensional concept, but its component dimensions are not well understood and research perspectives outside of high-income contexts are rare, which creates blind spots in literature and practice.

WHAT THIS STUDY ADDS

We conducted original mixed-methods research to ground the understanding of trust in the local realities of a lower middle-income context.

Trust in rural Lao PDR is readily understood, intrinsically valued and comprises eight distinct dimensions.

The behavioural impacts of trust are mild and concentrated in antenatal healthcare access but can be leveraged relatively economically.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

We provide a methodology for developing and deploying locally grounded trust measurement at scale.

Building interpersonal, institutional and service-related trust in healthcare can complement physical aspects of health system development but requires more attention through formal integration in health policies and initiatives.

Trust-building interventions require substantial groundwork with target populations to identify key dimensions and issues in their trust towards health services.

Introduction and objective

The notion of ‘trust’ has been argued to contribute positively to patients’ health service uptake, healthcare experiences, ‘better symptom-oriented subjective outcomes’ and even lower mortality in some cases. 1–3 With renewed interest in the subject due to the rapid expansion of international health initiatives and the emergency responses to the COVID-19 pandemic, global health research and policy now foreground concerns about waning population trust in healthcare and science. 4–6 However, trust remains an elusive notion that is often mobilised as a rhetorical device without consideration of its dimensions, drivers and downstream behavioural consequences.

The objective of this article is to contribute to the further development of the conceptual and methodological foundations of ‘trust in healthcare’. Drawing on the case of Lao PDR where exploratory sociomedical research has laid the foundation for a nation-wide initiative to enhance utilisation of rural primary healthcare services through community engagement, we address the question, ‘ What are the local expressions and patterns of trust in rural Lao PDR?’ In answering this question, we document a detailed mixed-methods approach to explore whether and how trust matters in local healthcare contexts of a lower middle-income country—a perspective that the literature has largely neglected. Our study, thus, identifies and illustrates eight distinct dimensions of trust in primary care services, and it offers a methodology to assess patterns, drivers and the behavioural implications of community trust in primary care services at scale.

Conceptual and methodological background

‘Trust’ as either a noun or a verb is a broad concept with a wide range of meanings, making it complicated to define or measure. 6 Pilgrim and Vassilev 7 detail the multiple connotations of trust, which are subjectively experienced and implicitly related to power, risk and ethics. In healthcare, this includes both interpersonal trust in the healthcare provider, trust towards the product or service provided and systemic or institutional trust in the health system. 8 9 Within the asymmetrical interaction with a healthcare provider, trust is inversely associated with the perception of risk by the patient and can, thus, be defined as ‘a set of expectations that the healthcare provider will do the best for the patient, and with good will, recognising the patient’s vulnerability’. 10 As such, trust is subjected to not only external influencing factors such as health information or political action but also past health system operations and personal experiences therein. 8 9

The most common method to measure trust in healthcare providers is a quantitative ‘trust scale’ that aggregates responses to a set of structured survey questions. 6 11 A systematic review identified 45 different measures of trust in the health sector and 12 questions on average per scale. 12 Among these measures, the most widely used is the ‘trust in Physician Scale’ 13 —an 11-item self-reported instrument developed to assess an individual’s trust in their physician, for instance, by gauging agreement with such statements as ‘I trust my doctor (provider)’. However, broad assessments such as ‘I trust my doctor’ are likely to mask the reasons for good or poor trust (note that items in this scale as used, eg, by Anderson Dedrick, 13 examine other dimensions of trust as well). Qualitative research can usefully complement quantitative work, for instance, by helping identify and develop contextually appropriate trust scales and their components. An example is the mixed-method approach of Greene and Ramos, 11 who found that trust in US healthcare providers was highly correlated with the trust components of communication, caring and competence. A systematic literature review by Ozawa and Sripad 12 documented in total eight such components, including honesty, communication, confidence, competence, fidelity, system trust, confidentiality and fairness.

Most studies in this field focus on high-income country contexts and especially the USA, 6 the latter of which represented 37 out of the 45 studies, which Ozawa and Sripad 12 reviewed (only three reviewed studies were not from high-income settings). Gopichandran et al. 14 argue that low and middle-income health systems commonly exhibit ‘deprivation of resources, lack of universal health access, low public expenditure on healthcare, high out of pocket expenditure on health and poorly regulated private practice’. As low and middle-income health systems thus differ systematically from high-income contexts (even where universal health coverage alleviates healthcare utilisation issues relating to affordability), they produce economically, politically, socially and also emotionally different health system encounters for local populations that afford further systematic research into the nuancing elements affecting trust in healthcare providers.

Among the rare examples outside of high-income settings is the qualitative study in rural south India by Gopichandran and Chetlapalli, 15 which identified five key dimensions of trust that deviated from common trust scales in high-income settings, namely ‘perceived competence of the doctor, assurance of treatment (irrespective of time or ability to pay), willingness to accept drawbacks in the doctor, loyalty and respect’. Studies in Cambodia furthermore reported different levels of trust towards public and private health facilities, whereby private providers were deemed relatively more convenient, approachable, easy to contact and would accept delayed payments. 16 17 Research from Mozambique found instead that the main influence on trust derived from healthcare providers’ communicative performances during their interactions with patients. 18 These isolated yet rich examples demonstrate that more research in low- and middle-income contexts can help provide important nuance to the understanding of trust in healthcare.

In Lao PDR, qualitative research into healthcare-seeking experiences demonstrated that trust had strongly pronounced interpersonal components: people were found to select healthcare based on their relationship to, the reputation of, and recommendations by trusted people for the various local healthcare providers. 19 20 Conversely, patients would be afraid of receiving poor care or paying extra fees if they did not have any previous connection with the provider. 21 Other qualitative and quantitative studies have further shown that trust in providers was also affected by the providers’ communication and counselling skills as well as their attitudes. 22–24 Providing services that people want and need, and regular interaction with the local community, was also argued to encourage healthcare utilisation and to build trust from both a service and institutional perspective. 25

Patient and public involvement

The research took place across rural Lao PDR and in conjunction with a nationwide initiative to strengthen primary healthcare services that the Lao Ministry of Health (MoH) and Ministry of Home Affairs (MoHA) implemented with technical support from the WHO. 26 This initiative was borne out of healthcare challenges experienced during the COVID-19 pandemic and involved support for localised healthcare governance and a multisectoral approach to empower communities to jointly improve health of the people in Lao PDR. 26 Relationship building and healthcare ownership through trust-building engagement activities on the village level played a central role in this process; the initiative became accordingly referred to as Community Network Engagement for Essential Healthcare and COVID-19 Responses Through Trust (CONNECT)—and motivated the present research. The roll-out of CONNECT commenced in December 2021 (and was still ongoing at the time of manuscript submission), targeting high priority ‘focus’ districts and villages nation-wide. The foundational research reported in this manuscript, therefore, constituted a critical form of public involvement in the design and implementation of the CONNECT initiative. As we further indicate in the Results sections, we elicited and received positive participant feedback about the data collection process and research instrument.

Research sites

The study setting of rural Lao PDR represents a lower middle income country context with rapid development progress yet persistent healthcare challenges and inequalities. 27 Official poverty headcount rates (at US$2.15/day in purchasing power parity) declined from 25.4% in 2002 to 7.1% in 2018, and between 2000 and 2020, life expectancy increased from 58 to 68 years and rural electrification from 27.4% to 100%. 27 Despite this progress, public health expenditure has remained at a comparatively low 1.2% of gross domestic product, and its 42.9% share of total health expenditure hardly exceeded the 41.8% accounted for by out-of-pocket expenses in 2020. 27 Lao PDR is also still dependent on health aid, which accounted for 15.4% of total health expenditure in 2020. 27 In addition, 63.1% of the country’s 7.4 m population live scattered across the vast rural areas (Lao PDR is the most sparsely populated country in Southeast Asia and the seventh in all Asia), which make infrastructure and healthcare provision challenging. 28 For example, safely managed drinking water access remains at a low 12.4% in 2020 while latest available data from 2017 indicate that only 67.0% of births in rural areas were registered. 27 Rural healthcare provision, therefore, remains challenging, even if recent advances in National Health Insurance provision as de facto universal health coverage scheme have lowered the costs of accessing health services to a nominal copayment of LAK 5000 (US$ 0.30).

The specific study sites were the provinces of Bokeo, Xaisomboun, Khammouane and Champassak ( figure 1 ). Latest poverty measurement data by Coulombe et al. 29 from the year 2015 indicated that Bokeo had a poverty headcount ratio of 25.5% and an adult literacy rate of 67.0%, with corresponding values in Xaisomboun of 27.8% and 74.4%, in Khammouane of 27.1% and 83.5% and in Champassak of 22.8% and 91.2%. While Bokeo Province was also the site for the preliminary research, all provinces together represented a selection of geographically, economically and ethnically diverse settings.

Download figure
Open in new tab
Download powerpoint

Map of Lao PDR and study sites. Source: Adapted from Wikimedia Commons ( https://commons.wikimedia.org ; file: Laos provinces.svg. user: Infernoapple). Study provinces highlighted in red; Bokeo province was also site for the preliminary qualitative research.

Research design

Our research team implemented a sequential mixed-method research design to study the local expressions and patterns of trust in rural Lao PDR ( figure 2 ). Phase 1 aligned with the CONNECT Initiative and involved exploratory qualitative research that aimed at generating evidence to improve community engagement, to increase uptake of essential maternal and child healthcare services and to develop community-led COVID-19 responses. The second phase translated the qualitative findings into a survey questionnaire with a dedicated module on trust and involved a parallel qualitative–quantitative design: phase 2a tested the survey instrument through cognitive and contextualising expert interviews, and phase 2b piloted and implemented the survey questionnaire.

Mixed-method research design including timeline and data collection tools. Source: Authors. Grey-shaded elements were part of the larger preliminary research for the CONNECT Initiative but did not inform the research objective on trust. CONNECT, Community Network Engagement for Essential Healthcare and COVID-19 Responses Through Trust.

Data collection

Data collection during phase 1 took place in February 2021 in Bokeo Province. Among the broader range of open-ended qualitative data collection methods during this phase, 30 those that enabled a specific insight into the issue of trust from community members’ perspectives were 30–60 min semistructured interviews and 90 min focus group discussions with villagers. The interviews and focus group discussions were convened by trained master’s students and staff from the Lao Tropical and Public Health Institute (Lao TPHI) with support from the University of Health Sciences (UHS), Mother and Child Health Centre and WHO in Lao PDR. Each interview and discussion session was audio recorded with prior informed consent. In the focus groups, one investigator led the session through a series of open-ended questions and prompts while other investigators noted key points and observations, which were subsequently synthesised through daily discussions among the team in the field to draw out common themes.

The open-ended approach (summarised here to avoid redundancies and to retain brevity of the overall manuscript) indicated that key reasons for poor trust in health providers included: being charged extra fees or being told to buy medicines privately; nobody available at health facility or no medicines/equipment; own or peers’ bad experiences; healthcare staff speaking impolitely, not paying attention, or having difficulties in communicating needs; not having any previous contact/connection with health staff; difficulties with understanding or using health insurance, lack of willingness by health staff to be flexible about documentation; health staff from a different gender/ethnic group, fear of discrimination or embarrassment. These initial insights formed the basis for a preliminary survey questionnaire module on community trust in primary healthcare services. The process was supported by the grounded inputs from the Lao research teams (who specialised in community development) and the expert review by Lao health systems and maternal and child health experts as well as medical anthropologists within our team.

Phase 2 took place from October 2022 to April 2023 and involved the piloting and implementation of the tablet-based and interviewer-administered 40 min survey questionnaire and its 10 min module on community trust in their local health centres. The pilot took place in Champassak Province and was followed by a further round of expert review, which entailed refinement of the question focus (eg, considering that payments and gifts may be voluntary to express gratitude), the range of indicators (ie, removing systems trust) and the answer categories (eg, capturing indifference in yes/no answer options). Both the pilot and implementation stage were accompanied by 20–30 min cognitive interviews to help develop the questionnaire and interpret its data (we used an open-ended variant of cognitive interviews that resembled more natural semistructured conversations on the individual survey items and thereby accommodated the interaction dynamics more respectfully in the local context than the structured ‘think aloud’ process of the original cognitive interview conceived in Western contexts), and 30–45 min expert interviews with community members, village authorities and health centre staff plus non-participant observations of community life to provider broader community context for survey data interpretation. 31 The data were collected by a seven-member Lao survey team experienced in community development, who gathered responses in Lao or in the preferred ethnic languages of the respondents (for which we recruited local translators). The data collection instruments are available in online supplemental material .

Supplemental material

Fieldwork for phase 1 was conducted in two districts of Bokeo province. In each district, the research team purposively selected two health centres based on variation in healthcare service uptake (informed by administrative data), and two villages in their catchment areas with varying sociodemographic characteristics (ethnicity, livelihoods, income). Across these four health centres and eight villages, 25 people participated in the semistructured interviews, including 11 pregnant women and 14 village health committee members (all aged between 18 and 55 years). A further 120 people joined 17 focus group discussions with five to eight homogenous participants each, covering six groups with pregnant women, six groups with husbands and five groups with senior villagers aged above 60 years. The participants had Hmong, Khmu, Lue, Lamed and lowland Lao ethnicity. 30

Data collection in phase 2 took place in three-stage survey design with non-probabilistic sampling. In the first stage, this involved four purposively selected provinces to represent diverse social, economic and healthcare settings across Lao PDR and following loosely the gradual roll-out of the CONNECT Initiative. Following the CONNECT objectives of reaching marginalised communities who experienced challenges in maternal and child healthcare uptake, the second stage involved the purposive selection of 14 CONNECT target villages as study sites, which were selected with variable levels of primary healthcare service uptake (prioritising low-uptake settings), remoteness, village size and ethnic diversity. Within the study communities, the third stage (representing study phase 2b) involved a complete census of all villagers (inclusion criteria: aged 16 and above, ordinary resident of the selected community). In the absence of comprehensive village registers prior to the data collection, we established sampling frames from publicly available satellite imagery to identify, list and approach all residential structures in a community, and update them dynamically during the data collection process where satellite images did not yet include newly built houses. 32 The resulting survey samples, thus, reflected a snapshot of the daytime resident population in the study communities with between 43 and 318 responses per village (131 on average) and 1838 responses in total ( table 1 ; refusal rates were below 5% on average). Complementary qualitative research took place alongside the survey (phase 2a) and involved a purposive selection of cognitive interview participants and expert informants based on their healthcare experiences, gender and their reported experiences of trust during the quantitative survey. The expert interviews involved village authorities and healthcare staff. The ensuing 26 cognitive interviews and 17 expert interviews included 31 villagers and village authorities, of whom 45.2% were women with ethnic groups spanning Hmong, Khmu, Lamed, Phu Thai, Jalee and lowland Lao. Online supplemental material table A1 provides further summary statistics on the demographic attributes of the sample.

View inline

Summary of qualitative and quantitative samples

Phase I qualitative data were transcribed into Lao and analysed by the Lao-speaking members of our research team (led by Lao TPHI, UHS, and WHO). For phase II, we transcribed and digitised all qualitative material and maintained bilingual Lao and English versions, which our broader study team analysed bilingually. 31 Analysis was carried out using spreadsheets and MAXQDA 2020 33 and following content-oriented thematic analysis. In phase I, this analysis process was inductive and involved identifying and coding any trust-related content of the data and subsequently categorising it into patterns or themes related to the various components of trust, so as to arrive at a comprehensive understanding of the varied dimensions of trust in primary healthcare services. The qualitative thematic analysis process in phase II was instead deductive as it focused on the initially established themes in order to identify their expressions and relevance as well as to triangulate the phase I findings. In this process of data triangulation across phases, the diversity of respondents and settings helped to actively source negative cases to challenge—and more clearly delineate—the categories within the evolving structure of the multidimensional trust concept. With view towards conciseness, the presentation of the qualitative findings in this manuscript will thereby foreground the responses to the cognitive interviews as they provide direct reactions to the preliminary trust dimensions developed during Phase 1 (on the basis of broader, open-ended qualitative data).

The subsequent quantitative analysis aimed at presenting the (a) resulting patterns, (b) socioeconomic correlates and (c) behavioural consequences of trust in rural Lao PDR. To describe the levels and patterns of trust and its component dimensions, we used non-inferential descriptive statistical analysis given that the community census data already represented the daytime adult population in the 14 case study communities. 34 The descriptive analysis in step (a) thereby served as an additional layer of method triangulation to establish the prevalence and emerging patterns of trust among our diverse study sites in Lao PDR. Steps (b) and (c) used multivariate regression analysis, 34 namely: linear regression models to understand the predictors of the trust index (using common socio-economic indicators such as gender, education, wealth, ethnicity and village location), and logistic regression models to understand the contribution of trust to health centre access during acute illnesses (focusing on illness episodes reported by adults and for children under their supervision) and during pregnancies (reported by currently and recently pregnant women). The regression models in step (c) both controlled for standard socioeconomic indicators; healthcare access during acute illnesses further controlled for illness severity and whether the patient was an adult or child. Although the pilot phase entailed slight modifications to the original survey instrument, the trust indices in the pilot and full-implementation provinces were highly correlated and we, therefore, present provincial-level disaggregated statistics from all four provinces in this paper.

Ethical considerations

Prior informed consent was obtained from all study participants. The data collection in both phases was integrated into government structures: public health authorities facilitated village access and data collection; operational insights from each survey mission were fed back to village and health authorities; and survey findings were shared with provincial and central government authorities (including MoH and MoHA).

Qualitative exploration

Relevance of trust.

Before exploring what trust means concretely, it is helpful to establish its relevance in the rural Lao context. The qualitative findings suggested that it did: participants were generally comfortable talking about trust, using the typical words (or ethnic language equivalents) for the literal Lao translations of ‘trust’ (ຄວາມໄວ້ເນື້ອເຊື່ອໃຈ or khuam vai nuea suea jai ) and ‘confidence’ (ຄວາມໝັ້ນໃຈ or khuam mun jai ). As a widely understood concept, participants underlined that ‘ trust is important’ (man, 42, lowland Lao, Khammouane Province, cognitive interview) and were easily able to explicate their trust in primary healthcare services, explaining, for instance, that they had ‘ about 70%’ confidence in their local health centres (man, 48, Hmong, Xaisomboun Province; cognitive interview). Even if the issue of trust was not being probed explicitly, it arose naturally during conversations and observations.

The subject of trust also appeared to have often real implications for the treatment-seeking behaviour of patients and caregivers as villagers would in low-trust situations ‘ skip the health centre’ (woman, 26, lowland Lao, Champassak Province, cognitive interview) and ‘ better go directly to the district hospital’ (man, 37, Phu Thai, Khammouane Province, cognitive interview). Trust was, therefore, a pervasive and relevant concept in local treatment-seeking practices.

Defining trust

Participants were able to articulate personal definitions of trust, for instance, relating to health centre staff doing a very good job’ so that the patients will get better very fast (man, 42 and 37, lowland Lao, Khammouane Province) and in recognition of the efforts and intrinsic motivation of healthcare workers to use of their ability to help people (man, 52, Khmu, Bokeo Province; similar statements were also encountered among Khmu and Hmong respondents in Xaisomboun Province). Ethnic minority groups further stressed in their definitions of trust the direct interactions with healthcare staff, such as in the case of a 24-year-old woman Lamed villager: the doctors do not pay close attention to us. I think just because I am not the head of the village or someone that important, they do not treat us well .

However, trust was not explicitly recognised among every villager. Especially female respondents would reiterate that they cannot explain the idea of ‘trust’ and that It’s just that I don’t understand it’ (woman, 21, lowland Lao, Khammouane Province; woman, 27, Khmu, Bokeo Province; woman, 25, Hmong, Xaisomboun Province). Trust does also not automatically supersede other pragmatic considerations of healthcare utilisation such as mere availability of facilities and medical supplies. A 64-year-old lowland Lao man in Champassak Province would share in this context that he absolutely trusts the local health centre, but if something happened here, we are likely to go to the 103 Hospital (a local military hospital) , which is closer to us than the health centre .

Overall, this wide range of definitions suggests that externally assigned definitions of trust run the risk of misrepresenting local populations’ priorities. A systematic consideration of the components of this concept is, therefore, beneficial to create locally relevant forms of measurement.

Trust components in rural Lao PDR

The qualitative analysis yielded eight themes representing subcategories of trust in primary healthcare services in rural Lao PDR across the three main types of trust—interpersonal, institutional and service-related trust (represented through the coding framework in figure 3 ), which formed the basis for the subsequent development of quantitative survey indicators to measure trust at scale.

Coding framework representing categories of trust as core themes, with explanation and example quotes. Source: Authors, derived from qualitative research fieldwork.

The first theme was communication as a form of interpersonal trust, with impolite, inattentive or difficult interactions indicating diminished trust in the provider. Villagers were generally ready to articulate their opinions about communication experiences. While experiences sometimes involved nuanced statements or even explicit praise (eg, They were polite and explain the symptoms, treatment, and recommendation;’ man, 47, Jalee, Khammouane Province, cognitive interview), it was mainly the negative communication experiences that participants related directly to their trust in healthcare staff. One of several examples involved a respondent in Champassak province, who recalled situations where staff were on their phones, keep us waiting, and […] did not give any advice (man, 29, lowland Lao, Champassak Province, cognitive interview). Also language barriers would provoke experiences of abrasive interactions and poor treatment—as especially female members of ethnic communities reported repeatedly.

A second and related component of trust was the concrete treatment experience, represented through respectful care (ie, interpersonal trust, owing to the emphasis on ‘respect’). Common experiences of disrespect arose during maternal and child care at the health centres. In one such case, a woman bringing her feverish child to the health centre found only male staff who ‘ did not really care, just do everything very quickly’ (woman, 26, lowland Lao, Champassak Province, cognitive interview). Likewise, a mother delivering her baby at the health centre recalled how staff ‘ did not do anything. They just cut the umbilical cord, but did not clean the baby, and then they gave the baby to my mother-in-law’ , during which process she was left exposed as the staff ‘ did not cover up anything for me’ (woman, 24, Lamed, Bokeo Province, cognitive interview). Treatment experiences, therefore, often related negatively to trust; that is, they were disrespectful.

A third component of trust was the nature of the personal relationships between community members and health centres (interpersonal trust). Existing connections, a shared community identity, or outreach activities would create familiarity and enable comfortable interactions (thus closely relating to the two aforementioned dimensions). Such relationships were typically expressed in positive terms like, Every time I go to the health centre, I can talk comfortably to the staff (man, 37, lowland Lao, Khammouane Province, cognitive interview; note that this is a typical Lao expression to describe a familiar relationship) ‘ They are like relatives’ (man, 53, lowland Lao, Champassak Province, cognitive interview). Positive relationships were also forged through health centre outreach activities, for example, to administer medicine and food supplements for children or to donate clothes (man, 47, Jalee, Khammouane Province, cognitive interview).

The fourth theme was fairness (interpersonal trust), which often followed as practical consequence from the relationships between health centres and communities. Expert interviews with village authorities and health centre staff would normally stress that all people were treated equally (eg, health centre director, Bokeo Province; village chief, Bokeo Province), but villagers’ views were more diverse (although some villagers agreed). Villagers in Champassak Province described for example how kinship ties with healthcare staff enabled preferential treatment, Bokeo villagers reported that health centres provide systematically better care for those villages where their staff live, and experiences of wealth-based and ethnic discrimination arose across the provinces. During our community visits in Bokeo, a villager shared, for instance, how she saw health centre staff neglecting poorly dressed patients, while another villager from a Lamed community experienced that the health centre staff discriminate against people from this village because they were not like Thai Lue (like the health centre staff) or lowland Lao (woman, 24, Lamed, Bokeo Province, cognitive interview).

The fifth component of trust was integrity (interpersonal trust), which related to a supportive healthcare environment in which providers behave transparently and without taking advantage of patients. Aside from perceptions of honesty and support through the care experience at the health centre (eg, with documentation), the key manifestation of integrity was whether healthcare workers explicitly demanded or implicitly valued payments beyond the official costs of healthcare provision—directly in cash or by requestion patients to buy out-of-stock medicines privately at the houses of health centre staff. This issue was most salient in the interviews in Khammouane and Bokeo Provinces, and preliminary research participants in Bokeo Province would repeatedly stress this problem:

When I go to the health centre, the staff asks me the question, ‘Did you bring a lot of money or not?’ If I have money, they would treat me, but if I don’t have money, they would tell me to go to another hospital (pregnant woman, Bokeo Province, preliminary focus group discussion).

Taking a broader institutional perspective, the sixth component of trust was the reputation of the healthcare provider . Indeed only few villagers ‘ never heard any (stories)’ (man, 53, lowland Lao, Champassak Province); rumours and narratives were pervasive in all communities. A typical kind of story would relate to treatment failure: A Champassak villager shared that her friends delivered a baby at her local health centre, but she lost too much blood and got transferred to the state hospital and eventually did not survive. Such and other outcomes like the death of a child would lead villagers to no longer trust the local health centre (woman, 26, lowland Lao, Champassak Province, cognitive interview). Elsewhere rumours spread that healthcare staff were illegally charging LAK 50 000 (approximately US$2.50) per COVID vaccine injection after claiming that they were out of stock. Rumours and stories thus typically undermined health providers’ reputation, and only rarely involved positive reports and recommendations.

The remaining two components both reflected service-related trust, the first of which was the assurance of treatment . This component reflected patients’ ability to receive care when they want or need it. Staffing, availability of medicines and also acceptance or refusal of patient requests would shape how community members trusted their health centres. A pregnant woman during a preliminary focus group discussion in Bokeo province illustrated this problem vividly through the case of a fellow villager:

A pregnant woman visited the health centre and did not see any staff there. Then she looked for them at the back of the health office, but the staff got upset and shouted at the woman, saying that, ‘At your age, you already had experience of pregnancy. So why do you come here?’ That is why we do not like going to the health centre except when we have a severe illness, otherwise we do not go. Even if we go there, we get nothing from them . (Pregnant woman, Bokeo Province, preliminary focus group discussion)

Such examples of trust-impacting assurance of treatment were common, and also included cases such as absent health centre staff who were instead found drinking beer (Champassak Province) or long queues and delays in getting access during emergencies (Bokeo Province).

The final service-related dimension of trust pertained to the perceived competence of the health centre staff. Healthcare staff skills featured prominently in community members’ narratives, whereas questions surrounding the assurance of treatment were often answered in negative terms, perceptions about staff competence where typically more balanced, with positive impressions often underlined by patients’ willingness to voluntarily offer additional compensation to staff: They never asked (for money). But we offer them (money) as a gift. They take good care of us, so we voluntarily give it to them . […] If we don’t give them money, they would still take good care of us (man, 44, Hmong, Xaisomboun Province, cognitive interview).

In addition to these eight dimensions, the literature and the preliminary research phase would also highlight ‘systems trust’ as an important institutional component of trust that goes beyond the direct relationship between community members and health centres. Systems trust offers a useful perspective that could complement the existing institutional theme of ‘reputation’ in our qualitative research. However, systems trust as a broader belief in institutions, processes and policies of the health system (eg, the government’s ability to establish a functional referral system, see Straten et al 35 ) often remained an abstract idea for villagers or would otherwise materialise in expressions that were orthogonally related to trust in primary health services. Villagers would, for instance, describe that needing to access a health centre first to get a referral to a district hospital would be an inconvenience (woman, 26, lowland Lao, Champassak Province, cognitive interview) as they would go there just to waste time and money for fuel (man, 37, Phu Thai, Khammouane Province, cognitive interview)—rather than expressing their trust in the dependence and reliability of these referral systems. As our study focused specifically on trust in primary healthcare services, and as health centres’ community-level reputation reflected on institutional aspects of trust to a limited extent, a separate assessment of systems trust in broader health services may, therefore, be better suited as an alone-standing and complementary concept rather than an integrative component of trust in primary healthcare.

In summary, the main qualitative themes reflecting on the components of trust did not only underline that the concept requires local grounding to enable meaningful conversations and analysis and also that different socioeconomic strata were likely to experience trust fundamentally differently. The following quantitative component in our mixed-method study describes the systematic patterns of trust in and across the rural communities.

Survey results

Instrument construction, testing and validation.

Following the questionnaire development, testing and piloting process, we arrived at an agglomerative trust index that translated the eight components of trust into concrete indicators and questionnaire items—summarised in figure 4 . The interconnectedness of these components in people’s lived experiences meant that some indicators could speak to more than one dimension. For instance, refusal of treatment would reflect on treatment assurance, but respondents would also mention that the experience of refusal reflected on their sense of fairness and that the reasons for refusal hinted at the personal relationship between villagers and health centre staff.

Translation of trust dimensions into measurable indicators in survey questionnaire. Source: Authors, derived from qualitative research fieldwork. Variously positively and negatively worded questions to avoid affirmation bias. Binary response options (yes/no plus ‘don’t know’) coded such that positive indications of trust (eg, a ‘no’ response to a negatively worded question) would positively contribute to the trust 8-item trust scale.

The cognitive interviews demonstrated that the indicators reflected relevant dimensions of trust, and that respondents were able to answer the survey questions confidently. Villagers would commonly comment that they were happy to express and share my experiences (woman, 21, lowland Lao, Khammouane Province, cognitive interview) and that the survey questions were easy to answer (man, 34, lowland Lao, Champassak Province, cognitive interview) given that those are the problems that we face every day (man, 30, Lamed, Bokeo Province, cognitive interview). Perhaps yet more importantly, the respondents also repeatedly stressed the more fundamental value of gathering information about trust from them. For example, a female villager in Champassak Province commented that our survey team were the first group of people I shared [feedback about the health centre] with and that she hope [d that] it will create some impact (woman, 26, lowland Lao, Champassak Province, cognitive interview). Another villager would explain that, We do want to share our opinion [about the health centre] but it’s quite hard. And luckily we have your project come to our village. Therefore, I am very proud and grateful to share ,’ hoping in light of their remote location that the survey would help the health centre develop (Male, 30, Lamed, Bokeo Province, cognitive interview; note that survey insights were shared accordingly with authorities on the village, district, provincial, and central levels). (While this also suggests that reticence among the respondents was limited, among the mechanisms to elicit an open response from the participants were the use of open-ended questions to avoid social desirability biases (eg, ‘Can you give me an example of the kind of stories you heard about the health centre or its staff?’) and alterations of positively and negatively worded binary response questions (eg, ‘Can you talk comfortably with the staff at the health centre?’ vs ‘Is the health centre a place where staff treat you badly?’) to limit affirmation bias among potentially reticent respondents.)

Statistical findings

In this final Results section, we describe the patterns and distribution of trust across and within the 14 Lao case study communities. Table 2 begins with showing the trust index, whereby each component was normalised into a value range from (−1 to +1). Adding all eight components, the overarching index ranged accordingly from −8 to +8).

Distribution of trust index dimensions across Lao provinces

The top part of table 2 demonstrates that most indicators were on average positive (except tonality in Champassak), meaning that respondents would typically express trust rather than distrust. We can also observe a high degree of variability across the components (see ‘average’ column): The tonality of health centre stories (representing institutional trust through the community-level reputation of primary healthcare services) was the least trusting expression, followed by the perceived competence in provider skills as a form of service-related trust. In contrast, experiences of treatment refusal were relatively uncommon. Other trust dimensions with particularly low expressions were the experience of poor treatment in Champassak and Xaisomboun Provinces, common informal payments and gifts to healthcare providers in Bokeo Province, or the perceived skill level of health centre staff in Khammouane Province. The largest differences across the provinces included the presumed readiness of health centres to cater to accidents (Assurance of care), experiences of discrimination (Integrity), and treatment refusal (Relationship/Fairness/Assurance of care). Experiences of ethnic discrimination as an expression of interpersonal trust were surprisingly uncommon compared with the qualitative data: while 7.9% (142/1797) of the sample reported instances of discrimination, only 8.1% (7/87) of the 87 explicit explanations about these situations related to ethnicity, whereas with 37.1% (30/87) most cases related to economic discrimination (based on wealth and poverty).

The eight components formed a composite trust index whose values ranged from 4.19 in Champassak Province to 4.85 in Xaisomboun Province. This composite index enabled a more nuanced and insightful understanding of trust than an overarching one-dimensional indicator (ie, whether people ‘rather trust’ or ‘rather distrust’ the health centre; see bottom part of table 2 ), which only had moderately positive correlation coefficient of +0.44 with the trust index. Table 2 also provides an alternative measure of ‘trust,’ based on the number of times that health centres were mentioned as recommended resorts to care for (a) antenatal care, (b) place of delivery, (c) injury treatment and (d) COVID-19 care. Ranging from (0 to +4), this alternative index exhibited its lowest value of 1.03 for Champassak Province and its highest value of 3.25 in Bokeo Province, while being only mildly positively correlated with the eight-item trust index (correlation coefficient: +0.29). These scores highlight the limitations of this alternative measure: In Champassak, many case study communities were located near better-equipped hospitals that made a visit to the health centre unnecessary, whereas in Bokeo Province, many of the communities were located far away from other healthcare facilities, which made it most plausible to recommend fellow villagers to seek care at the available health centre irrespective of how much one trusts them. The eight-item index is thus a more informative assessment of active dis-/trust in local health centres; an index based on recommendations for resorts to care would instead conflate trust with pragmatic considerations of access and availability.

The socioeconomic correlates of trust were largely indistinctive. Although the SD of the index ranged within each village from 1.88 to 3.12 (with an index value range as wide as 13 index points, that is, from (−5 to +8)), neither gender, education, wealth, age, ethnic group, mother tongue or religion exhibited a noteworthy bivariate or multivariate relationship with the trust index (not shown here; see online supplemental material table A2 ). The trust index varied systematically across the case study communities, among which average index scores ranged from 3.83 to 5.65. A multivariate linear regression model would indicate that 7 out of 14 village identifiers had a statistically significant association with the trust index (at the 5% level). This suggests that communities tended to share relatively homogenous experiences with their local health centres, and that health centre operations tended to be more decisive in shaping local expressions of trust.

In a final step, we estimated multivariate logistic regression models that assessed the relationship between health centre utilisation of patients and pregnant women, trust and other common explanatory variables such as gender, education and household wealth. Table 3 summarises the main findings of this analysis and shows that the trust index did not exhibit a statistically significant association with health centre access during acute illness episodes, and only a mildly positive association at the ten-percent-level emerged for women seeking antenatal care during a current or recent pregnancy. While the coefficient estimates were only mildly sensitive to the inclusion of village dummy variables, overall model fitness for the smaller sample models of antenatal care was affected by their inclusion (as the removal of perfect predictors would reduce the effective sample size).

Regression results

Robustness checks using the alternative, recommendation-based index (models 3, 4, 7 and 8) exhibited a consistently positive and statistically significant association (at the 1% level). In light of the aforementioned discussion, the analysis did not discern a statistically significant relationship between trust and health centre access during acute illness episodes, whereas availability of facilities appeared to be a more decisive predictor. However, in the case of pregnancy care, trust was weakly associated with health centre utilisation (as far as the small subsamples and the cross-sectional study design allows us to infer). For example, a 1 SD increase from the mean value of the recommendation index would be associated with a 20.6% percentage-point higher predicted rate of health centre utilisation; 1 SD changes from the mean index values for recently/currently pregnant women would be associated with a 4.9% higher predicted health centre utilisation rate for the trust index and a 10.9% higher predicted rate for the recommendation index. Figure 5 summarises these relationships graphically.

Predicted relationship between trust and health centre access Source: Authors. Predictions within index value ranges of respective sub-samples. Panels a1, a2, b1 and b2 based on Models 2, 4, 6 8 in table 2 , respectively. The estimated relationship between trust index and health centre access in Panel a1 is not statistically significant.

Our qualitative research established that issues of trust were pervasive in villagers’ narratives surrounding healthcare experiences on the primary care level. Villagers were ready to articulate what trust means, and our qualitative analysis identified eight themes representing important components of trust: communication, respectful care, relationship, fairness, integrity (all as expressions of interpersonal trust), reputation (institutional trust), assurance of treatment and competence (service-related trust). We translated these components into standardised survey items to trace the expressions of trust within and across 14 Lao communities in four provinces. Cognitive interviews attested that the survey instrument resonated with local notions of trust that were important from the perspective of the rural populations. The trust index thus enabled us to compare the expressions of trust in different regions of Lao PDR, whereby individual differences appeared less pronounced than variations across health centres that cater to the communities (similar to findings in Helfinstein et al. 36 ). Analysing the relationship between trust and health centre utilisation further suggested that different levels of trust were weakly linked to pregnant women’s antenatal care choices, and robustness checks indicated that availability of healthcare providers (gauged through villagers’ recommendations for care outlets) may be a more decisive predictor of health centre access.

In comparison to studies from high-income contexts (eg, 12 ), our research underlined the persistent importance of interpersonal, institutional (esp. health provider reputation) and service-related types of trust between community members and primary healthcare providers, 8 9 whereby individual dimensions of ‘confidentiality’ or ‘systems trust’ did not materialise as salient themes. Our work also provides methodological guidance on the translation from the qualitative identification of trust dimensions to their standardised assessment in a grounded and locally relevant survey instrument. In relation to the Lao research landscape in particular, our study did not detect a strong association between trust and healthcare utilisation 19 20 but it echoed widespread concerns about informal payments 21 and the importance of respectful care in the context of maternal and child healthcare services. 22–24

However, further research will benefit from exploring expressions of trust across low and middle-income countries more broadly to arrive at an authoritative and grounded framework of trust to guide global health policy. Future research would also benefit from studies of trust in other informal as well as formal elements of the health system (such as traditional healers) and how health and development interventions alter this landscape with potentially unintended consequences. 37–39

In the case of Lao PDR, our index suggested that priority areas to improve community trust in primary care services were service-related areas of provider skills and their tools, and interpersonal aspects of trust relating to practices of respectful care and the pervasive requirement of informal payments. The reputation of health centres was a key institutional element as well, whereby activities to boost the image of local health centres could include quality assurance initiatives for health centre staff communication (eg, through supportive supervision approaches) and relationship-building community outreach activities. The data analysis further suggested that the availability of healthcare providers may be more decisive in acute care situation as well as for antenatal care uptake. However, trust appears to be a factor for antenatal care access (where elements of individual choice may be more strongly emphasised than in acute care situations, see, eg, Phommachanh et al 22 ), which policy action could address potentially more economically as a first step.

Trust matters in global health, but the development of the concept has lagged behind its rhetorical use in policy and research. Our study aimed to contribute to this development from a rare lower middle-income country perspective. As we demonstrated that trust in rural Lao PDR was intrinsically valued and relatively important for antenatal healthcare access among pregnant women, we add to the conceptual, methodological and empirical knowledge of a topic with ever-growing importance in global health policy and research. The practical consequence of our work is that supply-sided aspects of frontline health system development remain important but relational dimensions in health system development expressed in interpersonal, institutional and service-related trust also require explicit recognition and integration into health policies and initiatives, 40 41 which can practically be supported by elevating the status of community engagement as a positive (ie, non-blaming) tool to foster trust and forge relationships between the general population and health service providers. 26 40 42 In addition, trust-building interventions may not yield impact if they fail to address locally important dimensions that require improvement. As a result, top-down approaches to community engagement are likely to fail and require instead substantial groundwork with target populations to identify key dimensions and issues in their trust towards health services. 26 43

Ethics statements

Patient consent for publication.

Not applicable.

Ethics approval

Ethical approval was obtained from the Lao National Ethics Committee for Health Research (NECHR; ref. 084/NECHR and 069/NECHR) and the WHO WPRO Ethics Review Committee (ref. 2020.13.LAO.1.MCN). Participants gave informed consent to participate in the study before taking part.

Acknowledgments

We would like to gratefully acknowledge the research partners OCC, WPRO, WHO country office; all stakeholders at provincial, district and all target communities and the member organisations of this research network for their assistance with this work. Thanks to all Lao TPHI staff and master student's promotion 20 and 21, staff at UHS, MCHC for the fieldworks data collection. We also acknowledge gratefully the extensive data collection efforts of Ounkham Souksavanh and the CONNECT Community Engagement team, the survey team including Thongkhoon Xayyahong, Latthanikone Sabphaisan, Maynika Phongsa, Antyka Xayaphone, Thinakone Louangdy, Keomano Luangkhot; specialist survey training provided by Nutcha Charoenboon; and administrative assistance from Toulavanh Xayphone.

Birkhäuer J ,
Kossowsky J , et al
Manzano A ,
Ezenwaka U , et al
Halbert CH ,
Weathers B ,
Delmoor E , et al
Taylor LA ,
Pilgrim D ,
Adhikari B ,
Yeong Cheah P ,
von Seidlein L
Larson HJ ,
Clarke RM ,
Jarrett C , et al
Yusof S , et al
Anderson LA ,
Gopichandran V ,
Wouters E ,
Chetlapalli SK
Gryseels C ,
Kuijpers LMF ,
Jacobs J , et al
Rodrigues CF
Phommachanh S ,
Essink DR ,
Jansen M , et al
Wright EP , et al
Sychareun V ,
Hansana V ,
Somphet V , et al
Phommasone K ,
Pongvongsa T , et al
Bodhisane S ,
Pongpanich S
Coulombe H ,
Epprecht M ,
Pimhidzai O , et al
Vongthongchit P
Haenssgen MJ
VERBI Software
Straten GFM ,
Friele RD ,
Groenewegen PP
Helfinstein S ,
Ramesh BM , et al
Charoenboon N ,
Haenssgen MJ ,
Warapikuptanun P , et al
Odugleh-Kolev A ,
Parrish-Sprowl J
Story WT , et al
Cocoman O ,
Portela A , et al
Sandlund M ,
Skelton DA , et al

Supplementary materials

Supplementary data.

This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

Data supplement 1

Handling editor Seye Abimbola

X @HaenssgenJ

Contributors MJH (guarantor): concept, proposal including methodology, overall supervision, data collection, overall data analysis and write-up. EE: concept, proposal including methodology, supervision, contribution to data collection, data analysis and edit. SPhomm, SPhomk, SKo: contribution to methodology, contribution to data analysis and edit. SKu: concept, contribution to methodology, contribution to data analysis, obtained ethical approval, funding acquisition, supervision and edit.

Funding The research was funded by the World Health Organization Regional Office # 202634961.

Disclaimer The author is a staff member of the World Health Organization. The author alone is responsible for the views expressed in this publication and they do not necessarily represent the views, decisions or policies of the World Health Organization.

Map disclaimer The depiction of boundaries on this map does not imply the expression of any opinion whatsoever on the part of BMJ (or any member of its group) concerning the legal status of any country, territory, jurisdiction or area or of its authorities. This map is provided without any warranty of any kind, either express or implied.

Competing interests None declared.

Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

Provenance and peer review Not commissioned; externally peer-reviewed.

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

Read the full text or download the PDF:

Open access
Published: 13 May 2024

What are the strengths and limitations to utilising creative methods in public and patient involvement in health and social care research? A qualitative systematic review

Olivia R. Phillips 1 , 2 na1 ,
Cerian Harries 2 , 3 na1 ,
Jo Leonardi-Bee 1 , 2 , 4 na1 ,
Holly Knight 1 , 2 ,
Lauren B. Sherar 2 , 3 ,
Veronica Varela-Mato 2 , 3 &
Joanne R. Morling 1 , 2 , 5

Research Involvement and Engagement volume 10 , Article number: 48 ( 2024 ) Cite this article

103 Accesses

2 Altmetric

Metrics details

There is increasing interest in using patient and public involvement (PPI) in research to improve the quality of healthcare. Ordinarily, traditional methods have been used such as interviews or focus groups. However, these methods tend to engage a similar demographic of people. Thus, creative methods are being developed to involve patients for whom traditional methods are inaccessible or non-engaging.

To determine the strengths and limitations to using creative PPI methods in health and social care research.

Electronic searches were conducted over five databases on 14th April 2023 (Web of Science, PubMed, ASSIA, CINAHL, Cochrane Library). Studies that involved traditional, non-creative PPI methods were excluded. Creative PPI methods were used to engage with people as research advisors, rather than study participants. Only primary data published in English from 2009 were accepted. Title, abstract and full text screening was undertaken by two independent reviewers before inductive thematic analysis was used to generate themes.

Twelve papers met the inclusion criteria. The creative methods used included songs, poems, drawings, photograph elicitation, drama performance, visualisations, social media, photography, prototype development, cultural animation, card sorting and persona development. Analysis identified four limitations and five strengths to the creative approaches. Limitations included the time and resource intensive nature of creative PPI, the lack of generalisation to wider populations and ethical issues. External factors, such as the lack of infrastructure to support creative PPI, also affected their implementation. Strengths included the disruption of power hierarchies and the creation of a safe space for people to express mundane or “taboo” topics. Creative methods are also engaging, inclusive of people who struggle to participate in traditional PPI and can also be cost and time efficient.

‘Creative PPI’ is an umbrella term encapsulating many different methods of engagement and there are strengths and limitations to each. The choice of which should be determined by the aims and requirements of the research, as well as the characteristics of the PPI group and practical limitations. Creative PPI can be advantageous over more traditional methods, however a hybrid approach could be considered to reap the benefits of both. Creative PPI methods are not widely used; however, this could change over time as PPI becomes embedded even more into research.

Plain English Summary

It is important that patients and public are included in the research process from initial brainstorming, through design to delivery. This is known as public and patient involvement (PPI). Their input means that research closely aligns with their wants and needs. Traditionally to get this input, interviews and group discussions are held, but this can exclude people who find these activities non-engaging or inaccessible, for example those with language challenges, learning disabilities or memory issues. Creative methods of PPI can overcome this. This is a broad term describing different (non-traditional) ways of engaging patients and public in research, such as through the use or art, animation or performance. This review investigated the reasons why creative approaches to PPI could be difficult (limitations) or helpful (strengths) in health and social care research. After searching 5 online databases, 12 studies were included in the review. PPI groups included adults, children and people with language and memory impairments. Creative methods included songs, poems, drawings, the use of photos and drama, visualisations, Facebook, creating prototypes, personas and card sorting. Limitations included the time, cost and effort associated with creative methods, the lack of application to other populations, ethical issues and buy-in from the wider research community. Strengths included the feeling of equality between academics and the public, creation of a safe space for people to express themselves, inclusivity, and that creative PPI can be cost and time efficient. Overall, this review suggests that creative PPI is worthwhile, however each method has its own strengths and limitations and the choice of which will depend on the research project, PPI group characteristics and other practical limitations, such as time and financial constraints.

Peer Review reports

Introduction

Patient and public involvement (PPI) is the term used to describe the partnership between patients (including caregivers, potential patients, healthcare users etc.) or the public (a community member with no known interest in the topic) with researchers. It describes research that is done “‘with’ or ‘by’ the public, rather than ‘to,’ ‘about’ or ‘for’ them” [ 1 ]. In 2009, it became a legislative requirement for certain health and social care organisations to include patients, families, carers and communities in not only the planning of health and social care services, but the commissioning, delivery and evaluation of them too [ 2 ]. For example, funding applications for the National Institute of Health and Care Research (NIHR), a UK funding body, mandates a demonstration of how researchers plan to include patients/service users, the public and carers at each stage of the project [ 3 ]. However, this should not simply be a tokenistic, tick-box exercise. PPI should help formulate initial ideas and should be an instrumental, continuous part of the research process. Input from PPI can provide unique insights not yet considered and can ensure that research and health services are closely aligned to the needs and requirements of service users PPI also generally makes research more relevant with clearer outcomes and impacts [ 4 ]. Although this review refers to both patients and the public using the umbrella term ‘PPI’, it is important to acknowledge that these are two different groups with different motivations, needs and interests when it comes to health research and service delivery [ 5 ].

Despite continuing recognition of the need of PPI to improve quality of healthcare, researchers have also recognised that there is no ‘one size fits all’ method for involving patients [ 4 ]. Traditionally, PPI methods invite people to take part in interviews or focus groups to facilitate discussion, or surveys and questionnaires. However, these can sometimes be inaccessible or non-engaging for certain populations. For example, someone with communication difficulties may find it difficult to engage in focus groups or interviews. If individuals lack the appropriate skills to interact in these types of scenarios, they cannot take advantage of the participation opportunities it can provide [ 6 ]. Creative methods, however, aim to resolve these issues. These are a relatively new concept whereby researchers use creative methods (e.g., artwork, animations, Lego), to make PPI more accessible and engaging for those whose voices would otherwise go unheard. They ensure that all populations can engage in research, regardless of their background or skills. Seminal work has previously been conducted in this area, which brought to light the use of creative methodologies in research. Leavy (2008) [ 7 ] discussed how traditional interviews had limits on what could be expressed due to their sterile, jargon-filled and formulaic structure, read by only a few specialised academics. It was this that called for more creative approaches, which included narrative enquiry, fiction-based research, poetry, music, dance, art, theatre, film and visual art. These practices, which can be used in any stage of the research cycle, supported greater empathy, self-reflection and longer-lasting learning experiences compared to interviews [ 7 ]. They also pushed traditional academic boundaries, which made the research accessible not only to researchers, but the public too. Leavy explains that there are similarities between arts-based approaches and scientific approaches: both attempts to investigate what it means to be human through exploration, and used together, these complimentary approaches can progress our understanding of the human experience [ 7 ]. Further, it is important to acknowledge the parallels and nuances between creative and inclusive methods of PPI. Although creative methods aim to be inclusive (this should underlie any PPI activity, whether creative or not), they do not incorporate all types of accessible, inclusive methodologies e.g., using sign language for people with hearing impairments or audio recordings for people who cannot read. Given that there was not enough scope to include an evaluation of all possible inclusive methodologies, this review will focus on creative methods of PPI only.

We aimed to conduct a qualitative systematic review to highlight the strengths of creative PPI in health and social care research, as well as the limitations, which might act as a barrier to their implementation. A qualitative systematic review “brings together research on a topic, systematically searching for research evidence from primary qualitative studies and drawing the findings together” [ 8 ]. This review can then advise researchers of the best practices when designing PPI.

Public involvement

The PHIRST-LIGHT Public Advisory Group (PAG) consists of a team of experienced public contributors with a diverse range of characteristics from across the UK. The PAG was involved in the initial question setting and study design for this review.

Search strategy

For the purpose of this review, the JBI approach for conducting qualitative systematic reviews was followed [ 9 ]. The search terms were (“creativ*” OR “innovat*” OR “authentic” OR “original” OR “inclu*”) AND (“public and patient involvement” OR “patient and public involvement” OR “public and patient involvement and engagement” OR “patient and public involvement and engagement” OR “PPI” OR “PPIE” OR “co-produc*” OR “co-creat*” OR “co-design*” OR “cooperat*” OR “co-operat*”). This search string was modified according to the requirements of each database. Papers were filtered by title, abstract and keywords (see Additional file 1 for search strings). The databases searched included Web of Science (WoS), PubMed, ASSIA and CINAHL. The Cochrane Library was also searched to identify relevant reviews which could lead to the identification of primary research. The search was conducted on 14/04/23. As our aim was to report on the use of creative PPI in research, rather than more generic public engagement, we used electronic databases of scholarly peer-reviewed literature, which represent a wide range of recognised databases. These identified studies published in general international journals (WoS, PubMed), those in social sciences journals (ASSIA), those in nursing and allied health journals (CINAHL), and trials of interventions (Cochrane Library).

Inclusion criteria

Only full-text, English language, primary research papers from 2009 to 2023 were included. This was the chosen timeframe as in 2009 the Health and Social Reform Act made it mandatory for certain Health and Social Care organisations to involve the public and patients in planning, delivering, and evaluating services [ 2 ]. Only creative methods of PPI were accepted, rather than traditional methods, such as interviews or focus groups. For the purposes of this paper, creative PPI included creative art or arts-based approaches (e.g., e.g. stories, songs, drama, drawing, painting, poetry, photography) to enhance engagement. Titles were related to health and social care and the creative PPI was used to engage with people as research advisors, not as study participants. Meta-analyses, conference abstracts, book chapters, commentaries and reviews were excluded. There were no limits concerning study location or the demographic characteristics of the PPI groups. Only qualitative data were accepted.

Quality appraisal

Quality appraisal using the Critical Appraisal Skills Programme (CASP) checklist [ 10 ] was conducted by the primary authors (ORP and CH). This was done independently, and discrepancies were discussed and resolved. If a consensus could not be reached, a third independent reviewer was consulted (JRM). The full list of quality appraisal questions can be found in Additional file 2 .

Data extraction

ORP extracted the study characteristics and a subset of these were checked by CH. Discrepancies were discussed and amendments made. Extracted data included author, title, location, year of publication, year study was carried out, research question/aim, creative methods used, number of participants, mean age, gender, ethnicity of participants, setting, limitations and strengths of creative PPI and main findings.

Data analysis

The included studies were analysed using inductive thematic analysis [ 11 ], where themes were determined by the data. The familiarisation stage took place during full-text reading of the included articles. Anything identified as a strength or limitation to creative PPI methods was extracted verbatim as an initial code and inputted into the data extraction Excel sheet. Similar codes were sorted into broader themes, either under ‘strengths’ or ‘limitations’ and reviewed. Themes were then assigned a name according to the codes.

The search yielded 9978 titles across the 5 databases: Web of Science (1480 results), PubMed (94 results), ASSIA (2454 results), CINAHL (5948 results) and Cochrane Library (2 results), resulting in 8553 different studies after deduplication. ORP and CH independently screened their titles and abstracts, excluding those that did not meet the criteria. After assessment, 12 studies were included (see Fig. 1 ).

PRISMA flowchart of the study selection process

Study characteristics

The included studies were published between 2018 and 2022. Seven were conducted in the UK [ 12 , 14 , 15 , 17 , 18 , 19 , 23 ], two in Canada [ 21 , 22 ], one in Australia [ 13 ], one in Norway [ 16 ] and one in Ireland [ 20 ]. The PPI activities occurred across various settings, including a school [ 12 ], social club [ 12 ], hospital [ 17 ], university [ 22 ], theatre [ 19 ], hotel [ 20 ], or online [ 15 , 21 ], however this information was omitted in 5 studies [ 13 , 14 , 16 , 18 , 23 ]. The number of people attending the PPI sessions varied, ranging from 6 to 289, however the majority (ten studies) had less than 70 participants [ 13 , 14 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 ]. Seven studies did not provide information on the age or gender of the PPI groups. Of those that did, ages ranged from 8 to 76 and were mostly female. The ethnicities of the PPI group members were also rarely recorded (see Additional file 3 for data extraction table).

Types of creative methods

The type of creative methods used to engage the PPI groups were varied. These included songs, poems, drawings, photograph elicitation, drama performance, visualisations, Facebook, photography, prototype development, cultural animation, card sorting and creating personas (see Table 1 ). These were sometimes accompanied by traditional methods of PPI such as interviews and focus group discussions.

The 12 included studies were all deemed to be of good methodological quality, with scores ranging from 6/10 to 10/10 with the CASP critical appraisal tool [ 10 ] (Table 2 ).

Thematic analysis

Analysis identified four limitations and five strengths to creative PPI (see Fig. 2 ). Limitations included the time and resource intensity of creative PPI methods, its lack of generalisation, ethical issues and external factors. Strengths included the disruption of power hierarchies, the engaging and inclusive nature of the methods and their long-term cost and time efficiency. Creative PPI methods also allowed mundane and “taboo” topics to be discussed within a safe space.

Theme map of strengths and limitations

Limitations of creative PPI

Creative ppi methods are time and resource intensive.

The time and resource intensive nature of creative PPI methods is a limitation, most notably for the persona-scenario methodology. Valaitis et al. [ 22 ] used 14 persona-scenario workshops with 70 participants to co-design a healthcare intervention, which aimed to promote optimal aging in Canada. Using the persona method, pairs composed of patients, healthcare providers, community service providers and volunteers developed a fictional character which they believed represented an ‘end-user’ of the healthcare intervention. Due to the depth and richness of the data produced the authors reported that it was time consuming to analyse. Further, they commented that the amount of information was difficult to disseminate to scientific leads and present at team meetings. Additionally, to ensure the production of high-quality data, to probe for details and lead group discussion there was a need for highly skilled facilitators. The resource intensive nature of the creative co-production was also noted in a study using the persona scenario and creative worksheets to develop a prototype decision support tool for individuals with malignant pleural effusion [ 17 ]. With approximately 50 people, this was also likely to yield a high volume of data to consider.

To prepare materials for populations who cannot engage in traditional methods of PPI was also timely. Kearns et al. [ 18 ] developed a feedback questionnaire for people with aphasia to evaluate ICT-delivered rehabilitation. To ensure people could participate effectively, the resources used during the workshops, such as PowerPoints, online images and photographs, had to be aphasia-accessible, which was labour and time intensive. The author warned that this time commitment should not be underestimated.

There are further practical limitations to implementing creative PPI, such as the costs of materials for activities as well as hiring a space for workshops. For example, the included studies in this review utilised pens, paper, worksheets, laptops, arts and craft supplies and magazines and took place in venues such as universities, a social club, and a hotel. Further, although not limited to creative PPI methods exclusively but rather most studies involving the public, a financial incentive was often offered for participation, as well as food, parking, transport and accommodation [ 21 , 22 ].

Creative PPI lacks generalisation

Another barrier to the use of creative PPI methods in health and social care research was the individual nature of its output. Those who participate, usually small in number, produce unique creative outputs specific to their own experiences, opinions and location. Craven et al. [ 13 ], used arts-based visualisations to develop a toolbox for adults with mental health difficulties. They commented, “such an approach might still not be worthwhile”, as the visualisations were individualised and highly personal. This indicates that the output may fail to meet the needs of its end-users. Further, these creative PPI groups were based in certain geographical regions such as Stoke-on-Trent [ 19 ] Sheffield [ 23 ], South Wales [ 12 ] or Ireland [ 20 ], which limits the extent the findings can be applied to wider populations, even within the same area due to individual nuances. Further, the study by Galler et al. [ 16 ], is specific to the Norwegian context and even then, maybe only a sub-group of the Norwegian population as the sample used was of higher socioeconomic status.

However, Grindell et al. [ 17 ], who used persona scenarios, creative worksheets and prototype development, pointed out that the purpose of this type of research is to improve a certain place, rather than apply findings across other populations and locations. Individualised output may, therefore, only be a limitation to research wanting to conduct PPI on a large scale.

If, however, greater generalisation within PPI is deemed necessary, then social media may offer a resolution. Fedorowicz et al. [ 15 ], used Facebook to gain feedback from the public on the use of video-recording methodology for an upcoming project. This had the benefit of including a more diverse range of people (289 people joined the closed group), who were spread geographically around the UK, as well as seven people from overseas.

Creative PPI has ethical issues

As with other research, ethical issues must be taken into consideration. Due to the nature of creative approaches, as well as the personal effort put into them, people often want to be recognised for their work. However, this compromises principles so heavily instilled in research such as anonymity and confidentiality. With the aim of exploring issues related to health and well-being in a town in South Wales, Byrne et al. [ 12 ], asked year 4/5 and year 10 pupils to create poems, songs, drawings and photographs. Community members also created a performance, mainly of monologues, to explore how poverty and inequalities are dealt with. Byrne noted the risks of these arts-based approaches, that being the possibility of over-disclosure and consequent emotional distress, as well as people’s desire to be named for their work. On one hand, the anonymity reduces the sense of ownership of the output as it does not portray a particular individual’s lived experience anymore. On the other hand, however, it could promote a more honest account of lived experience. Supporting this, Webber et al. [ 23 ], who used the persona method to co-design a back pain educational resource prototype, claimed that the anonymity provided by this creative technique allowed individuals to externalise and anonymise their own personal experience, thus creating a more authentic and genuine resource for future users. This implies that anonymity can be both a limitation and strength here.

The use of creative PPI methods is impeded by external factors

Despite the above limitations influencing the implementation of creative PPI techniques, perhaps the most influential is that creative methodologies are simply not mainstream [ 19 ]. This could be linked to the issues above, like time and resource intensity, generalisation and ethical issues but it is also likely to involve more systemic factors within the research community. Micsinszki et al. [ 21 ], who co-designed a hub for the health and well-being of vulnerable populations, commented that there is insufficient infrastructure to conduct meaningful co-design as well as a dominant medical model. Through a more holistic lens, there are “sociopolitical environments that privilege individualism over collectivism, self-sufficiency over collaboration, and scientific expertise over other ways of knowing based on lived experience” [ 21 ]. This, it could be suggested, renders creative co-design methodologies, which are based on the foundations of collectivism, collaboration and imagination an invalid technique in the research field, which is heavily dominated by more scientific methods offering reproducibility, objectivity and reliability.

Although we acknowledge that creative PPI techniques are not always appropriate, it may be that their main limitation is the lack of awareness of these methods or lack of willingness to use them. Further, there is always the risk that PPI, despite being a mandatory part of research, is used in a tokenistic or tick-box fashion [ 20 ], without considering the contribution that meaningful PPI could make to enhancing the research. It may be that PPI, let alone creative PPI, is not at the forefront of researchers’ minds when planning research.

Strengths of creative PPI

Creative ppi disrupts power hierarchies.

One of the main strengths of creative PPI techniques, cited most frequently in the included literature, was that they disrupt traditional power hierarchies [ 12 , 13 , 17 , 19 , 23 ]. For example, the use of theatre performance blurred the lines between professional and lay roles between the community and policy makers [ 12 ]. Individuals created a monologue to portray how poverty and inequality impact daily life and presented this to representatives of the National Assembly of Wales, Welsh Government, the Local Authority, Arts Council and Westminster. Byrne et al. [ 12 ], states how this medium allowed the community to engage with the people who make decisions about their lives in an environment of respect and understanding, where the hierarchies are not as visible as in other settings, e.g., political surgeries. Creative PPI methods have also removed traditional power hierarchies between researchers and adolescents. Cook et al. [ 13 ], used arts-based approaches to explore adolescents’ ideas about the “perfect” condom. They utilised the “Life Happens” resource, where adolescents drew and then decorated a person with their thoughts about sexual relationships, not too dissimilar from the persona-scenario method. This was then combined with hypothetical scenarios about sexuality. A condom-mapping exercise was then implemented, where groups shared the characteristics that make a condom “perfect” on large pieces of paper. Cook et al. [ 13 ], noted that usually power imbalances make it difficult to elicit information from adolescents, however these power imbalances were reduced due to the use of creative co-design techniques.

The same reduction in power hierarchies was noted by Grindell et al. [ 17 ], who used the person-scenario method and creative worksheets with individuals with malignant pleural effusion. This was with the aim of developing a prototype of a decision support tool for patients to help with treatment options. Although this process involved a variety of stakeholders, such as patients, carers and healthcare professionals, creative co-design was cited as a mechanism that worked to reduce power imbalances – a limitation of more traditional methods of research. Creative co-design blurred boundaries between end-users and clinical staff and enabled the sharing of ideas from multiple, valuable perspectives, meaning the prototype was able to suit user needs whilst addressing clinical problems.

Similarly, a specific creative method named cultural animation was also cited to dissolve hierarchies and encourage equal contributions from participants. Within this arts-based approach, Keleman et al. [ 19 ], explored the concept of “good health” with individuals from Stoke-on Trent. Members of the group created art installations using ribbons, buttons, cardboard and straws to depict their idea of a “healthy community”, which was accompanied by a poem. They also created a 3D Facebook page and produced another poem or song addressing the government to communicate their version of a “picture of health”. Public participants said that they found the process empowering, honest, democratic, valuable and practical.

This dissolving of hierarchies and levelling of power is beneficial as it increases the sense of ownership experienced by the creators/producers of the output [ 12 , 17 , 23 ]. This is advantageous as it has been suggested to improve its quality [ 23 ].

Creative PPI allows the unsayable to be said

Creative PPI fosters a safe space for mundane or taboo topics to be shared, which may be difficult to communicate using traditional methods of PPI. For example, the hypothetical nature of condom mapping and persona-scenarios meant that adolescents could discuss a personal topic without fear of discrimination, judgement or personal disclosure [ 13 ]. The safe space allowed a greater volume of ideas to be generated amongst peers where they might not have otherwise. Similarly, Webber et al. [ 23 ], , who used the persona method to co-design the prototype back pain educational resource, also noted how this method creates anonymity whilst allowing people the opportunity to externalise personal experiences, thoughts and feelings. Other creative methods were also used, such as drawing, collaging, role play and creating mood boards. A cardboard cube (labelled a “magic box”) was used to symbolise a physical representation of their final prototype. These creative methods levelled the playing field and made personal experiences accessible in a safe, open environment that fostered trust, as well as understanding from the researchers.

It is not only sensitive subjects that were made easier to articulate through creative PPI. The communication of mundane everyday experiences were also facilitated, which were deemed typically ‘unsayable’. This was specifically given in the context of describing intangible aspects of everyday health and wellbeing [ 11 ]. Graphic designers can also be used to visually represent the outputs of creative PPI. These captured the movement and fluidity of people and well as the relationships between them - things that cannot be spoken but can be depicted [ 21 ].

Creative PPI methods are inclusive

Another strength of creative PPI was that it is inclusive and accessible [ 17 , 19 , 21 ]. The safe space it fosters, as well as the dismantling of hierarchies, welcomed people from a diverse range of backgrounds and provided equal opportunities [ 21 ], especially for those with communication and memory difficulties who might be otherwise excluded from PPI. Kelemen et al. [ 19 ], who used creative methods to explore health and well-being in Stoke-on-Trent, discussed how people from different backgrounds came together and connected, discussed and reached a consensus over a topic which evoked strong emotions, that they all have in common. Individuals said that the techniques used “sets people to open up as they are not overwhelmed by words”. Similarly, creative activities, such as the persona method, have been stated to allow people to express themselves in an inclusive environment using a common language. Kearns et al. [ 18 ], who used aphasia-accessible material to develop a questionnaire with aphasic individuals, described how they felt comfortable in contributing to workshops (although this material was time-consuming to make, see ‘Limitations of creative PPI’ ).

Despite the general inclusivity of creative PPI, it can also be exclusive, particularly if online mediums are used. Fedorowicz et al. [ 15 ], used Facebook to create a PPI group, and although this may rectify previous drawbacks about lack of generalisation of creative methods (as Facebook can reach a greater number of people, globally), it excluded those who are not digitally active or have limited internet access or knowledge of technology. Online methods have other issues too. Maintaining the online group was cited as challenging and the volume of responses required researchers to interact outside of their working hours. Despite this, online methods like Facebook are very accessible for people who are physically disabled.

Creative PPI methods are engaging

The process of creative PPI is typically more engaging and produces more colourful data than traditional methods [ 13 ]. Individuals are permitted and encouraged to explore a creative self [ 19 ], which can lead to the exploration of new ideas and an overall increased enjoyment of the process. This increased engagement is particularly beneficial for younger PPI groups. For example, to involve children in the development of health food products, Galler et al. [ 16 ] asked 9-12-year-olds to take photos of their food and present it to other children in a “show and tell” fashion. They then created a newspaper article describing a new healthy snack. In this creative focus group, children were given lab coats to further their identity as inventors. Galler et al. [ 16 ], notes that the methods were highly engaging and facilitated teamwork and group learning. This collaborative nature of problem-solving was also observed in adults who used personas and creative worksheets to develop the resource for lower back pain [ 23 ]. Dementia patients too have been reported to enjoy the creative and informal approach to idea generation [ 20 ].

The use of cultural animation allowed people to connect with each other in a way that traditional methods do not [ 19 , 21 ]. These connections were held in place by boundary objects, such as ribbons, buttons, fabric and picture frames, which symbolised a shared meaning between people and an exchange of knowledge and emotion. Asking groups to create an art installation using these objects further fostered teamwork and collaboration, both at an individual and collective level. The exploration of a creative self increased energy levels and encouraged productive discussions and problem-solving [ 19 ]. Objects also encouraged a solution-focused approach and permitted people to think beyond their usual everyday scope [ 17 ]. They also allowed facilitators to probe deeper about the greater meanings carried by the object, which acted as a metaphor [ 21 ].

From the researcher’s point of view, co-creative methods gave rise to ideas they might not have initially considered. Valaitis et al. [ 22 ], found that over 40% of the creative outputs were novel ideas brought to light by patients, healthcare providers/community care providers, community service providers and volunteers. One researcher commented, “It [the creative methods] took me on a journey, in a way that when we do other pieces of research it can feel disconnected” [ 23 ]. Another researcher also stated they could not return to the way they used to do research, as they have learnt so much about their own health and community and how they are perceived [ 19 ]. This demonstrates that creative processes not only benefit the project outcomes and the PPI group, but also facilitators and researchers. However, although engaging, creative methods have been criticised for not demonstrating academic rigour [ 17 ]. Moreover, creative PPI may also be exclusive to people who do not like or enjoy creative activities.

Creative PPI methods are cost and time efficient

Creative PPI workshops can often produce output that is visible and tangible. This can save time and money in the long run as the output is either ready to be implemented in a healthcare setting or a first iteration has already been developed. This may also offset the time and costs it takes to implement creative PPI. For example, the prototype of the decision support tool for people with malignant pleural effusion was developed using personas and creative worksheets. The end result was two tangible prototypes to drive the initial idea forward as something to be used in practice [ 17 ]. The use of creative co-design in this case saved clinician time as well as the time it would take to develop this product without the help of its end-users. In the development of this particular prototype, analysis was iterative and informed the next stage of development, which again saved time. The same applies for the feedback questionnaire for the assessment of ICT delivered aphasia rehabilitation. The co-created questionnaire, designed with people with aphasia, was ready to be used in practice [ 18 ]. This suggests that to overcome time and resource barriers to creative PPI, researchers should aim for it to be engaging whilst also producing output.

That useable products are generated during creative workshops signals to participating patients and public members that they have been listened to and their thoughts and opinions acted upon [ 23 ]. For example, the development of the back pain resource based on patient experiences implies that their suggestions were valid and valuable. Further, those who participated in the cultural animation workshop reported that the process visualises change, and that it already feels as though the process of change has started [ 19 ].

The most cost and time efficient method of creative PPI in this review is most likely the use of Facebook to gather feedback on project methodology [ 15 ]. Although there were drawbacks to this, researchers could involve more people from a range of geographical areas at little to no cost. Feedback was instantaneous and no training was required. From the perspective of the PPI group, they could interact however much or little they wish with no time commitment.

This systematic review identified four limitations and five strengths to the use of creative PPI in health and social care research. Creative PPI is time and resource intensive, can raise ethical issues and lacks generalisability. It is also not accepted by the mainstream. These factors may act as barriers to the implementation of creative PPI. However, creative PPI disrupts traditional power hierarchies and creates a safe space for taboo or mundane topics. It is also engaging, inclusive and can be time and cost efficient in the long term.

Something that became apparent during data analysis was that these are not blanket strengths and limitations of creative PPI as a whole. The umbrella term ‘creative PPI’ is broad and encapsulates a wide range of activities, ranging from music and poems to prototype development and persona-scenarios, to more simplistic things like the use of sticky notes and ordering cards. Many different activities can be deemed ‘creative’ and the strengths and limitations of one does not necessarily apply to another. For example, cultural animation takes greater effort to prepare than the use of sticky notes and sorting cards, and the use of Facebook is cheaper and wider reaching than persona development. Researchers should use their discretion and weigh up the benefits and drawbacks of each method to decide on a technique which suits the project. What might be a limitation to creative PPI in one project may not be in another. In some cases, creative PPI may not be suitable at all.

Furthermore, the choice of creative PPI method also depends on the needs and characteristics of the PPI group. Children, adults and people living with dementia or language difficulties all have different engagement needs and capabilities. This indicates that creative PPI is not one size fits all and that the most appropriate method will change depending on the composition of the group. The choice of method will also be determined by the constraints of the research project, namely time, money and the research aim. For example, if there are time constraints, then a method which yields a lot of data and requires a lot of preparation may not be appropriate. If generalisation is important, then an online method is more suitable. Together this indicates that the choice of creative PPI method is highly individualised and dependent on multiple factors.

Although the limitations discussed in this review apply to creative PPI, they are not exclusive to creative PPI. Ethical issues are a consideration within general PPI research, especially when working with more vulnerable populations, such as children or adults living with a disability. It can also be the case that traditional PPI methods lack generalisability, as people who volunteer to be part of such a group are more likely be older, middle class and retired [ 24 ]. Most research is vulnerable to this type of bias, however, it is worth noting that generalisation is not always a goal and research remains valid and meaningful in its absence. Although online methods may somewhat combat issues related to generalisability, these methods still exclude people who do not have access to the internet/technology or who choose not to use it, implying that online PPI methods may not be wholly representative of the general population. Saying this, however, the accessibility of creative PPI techniques differs from person to person, and for some, online mediums may be more accessible (for example for those with a physical disability), and for others, this might be face-to-face. To combat this, a range of methods should be implemented. Planning multiple focus group and interviews for traditional PPI is also time and resource intensive, however the extra resources required to make this creative may be even greater. Although, the rich data provided may be worth the preparation and analysis time, which is also likely to depend on the number of participants and workshop sessions required. PPI, not just creative PPI, often requires the provision of a financial incentive, refreshments, parking and accommodation, which increase costs. These, however, are imperative and non-negotiable, as they increase the accessibility of research, especially to minority and lower-income groups less likely to participate. Adequate funding is also important for co-design studies where repeated engagement is required. One barrier to implementation, which appears to be exclusive to creative methods, however, is that creative methods are not mainstream. This cannot be said for traditional PPI as this is often a mandatory part of research applications.

Regarding the strengths of creative PPI, it could be argued that most appear to be exclusive to creative methodologies. These are inclusive by nature as multiple approaches can be taken to evoke ideas from different populations - approaches that do not necessarily rely on verbal or written communication like interviews and focus groups do. Given the anonymity provided by some creative methods, such as personas, people may be more likely to discuss their personal experiences under the guise of a general end-user, which might be more difficult to maintain when an interviewer is asking an individual questions directly. Additionally, creative methods are by nature more engaging and interactive than traditional methods, although this is a blanket statement and there may be people who find the question-and-answer/group discussion format more engaging. Creative methods have also been cited to eliminate power imbalances which exist in traditional research [ 12 , 13 , 17 , 19 , 23 ]. These imbalances exist between researchers and policy makers and adolescents, adults and the community. Lastly, although this may occur to a greater extent in creative methods like prototype development, it could be suggested that PPI in general – regardless of whether it is creative - is more time and cost efficient in the long-term than not using any PPI to guide or refine the research process. It must be noted that these are observations based on the literature. To be certain these differences exist between creative and traditional methods of PPI, direct empirical evaluation of both should be conducted.

To the best of our knowledge, this is the first review to identify the strengths and limitations to creative PPI, however, similar literature has identified barriers and facilitators to PPI in general. In the context of clinical trials, recruitment difficulties were cited as a barrier, as well as finding public contributors who were free during work/school hours. Trial managers reported finding group dynamics difficult to manage and the academic environment also made some public contributors feel nervous and lacking confidence to speak. Facilitators, however, included the shared ownership of the research – something that has been identified in the current review too. In addition, planning and the provision of knowledge, information and communication were also identified as facilitators [ 25 ]. Other research on the barriers to meaningful PPI in trial oversight committees included trialist confusion or scepticism over the PPI role and the difficulties in finding PPI members who had a basic understanding of research [ 26 ]. However, it could be argued that this is not representative of the average patient or public member. The formality of oversight meetings and the technical language used also acted as a barrier, which may imply that the informal nature of creative methods and its lack of dependency on literacy skills could overcome this. Further, a review of 42 reviews on PPI in health and social care identified financial compensation, resources, training and general support as necessary to conduct PPI, much like in the current review where the resource intensiveness of creative PPI was identified as a limitation. However, others were identified too, such as recruitment and representativeness of public contributors [ 27 ]. Like in the current review, power imbalances were also noted, however this was included as both a barrier and facilitator. Collaboration seemed to diminish hierarchies but not always, as sometimes these imbalances remained between public contributors and healthcare staff, described as a ‘them and us’ culture [ 27 ]. Although these studies compliment the findings of the current review, a direct comparison cannot be made as they do not concern creative methods. However, it does suggest that some strengths and weaknesses are shared between creative and traditional methods of PPI.

Strengths and limitations of this review

Although a general definition of creative PPI exists, it was up to our discretion to decide exactly which activities were deemed as such for this review. For example, we included sorting cards, the use of interactive whiteboards and sticky notes. Other researchers may have a more or less stringent criteria. However, two reviewers were involved in this decision which aids the reliability of the included articles. Further, it may be that some of the strengths and limitations cannot fully be attributed to the creative nature of the PPI process, but rather their co-created nature, however this is hard to disentangle as the included papers involved both these aspects.

During screening, it was difficult to decide whether the article was utilising creative qualitative methodology or creative PPI , as it was often not explicitly labelled as such. Regardless, both approaches involved the public/patients refining a healthcare product/service. This implies that if this review were to be replicated, others may do it differently. This may call for greater standardisation in the reporting of the public’s involvement in research. For example, the NIHR outlines different approaches to PPI, namely “consultation”, “collaboration”, “co-production” and “user-controlled”, which each signify an increased level of public power and influence [ 28 ]. Papers with elements of PPI could use these labels to clarify the extent of public involvement, or even explicitly state that there was no PPI. Further, given our decision to include only scholarly peer-reviewed literature, it is possible that data were missed within the grey literature. Similarly, the literature search will not have identified all papers relating to different types of accessible inclusion. However, the intent of the review was to focus solely on those within the definition of creative.

This review fills a gap in the literature and helps circulate and promote the concept of creative PPI. Each stage of this review, namely screening and quality appraisal, was conducted by two independent reviewers. However, four full texts could not be accessed during the full text reading stage, meaning there are missing data that could have altered or contributed to the findings of this review.

Research recommendations

Given that creative PPI can require effort to prepare, perform and analyse, sufficient time and funding should be allocated in the research protocol to enable meaningful and continuous PPI. This is worthwhile as PPI can significantly change the research output so that it aligns closely with the needs of the group it is to benefit. Researchers should also consider prototype development as a creative PPI activity as this might reduce future time/resource constraints. Shifting from a top-down approach within research to a bottom-up can be advantageous to all stakeholders and can help move creative PPI towards the mainstream. This, however, is the collective responsibility of funding bodies, universities and researchers, as well as committees who approve research bids.

A few of the included studies used creative techniques alongside traditional methods, such as interviews, which could also be used as a hybrid method of PPI, perhaps by researchers who are unfamiliar with creative techniques or to those who wish to reap the benefits of both. Often the characteristics of the PPI group were not included, including age, gender and ethnicity. It would be useful to include such information to assess how representative the PPI group is of the population of interest.

Creative PPI is a relatively novel approach of engaging the public and patients in research and it has both advantages and disadvantages compared to more traditional methods. There are many approaches to implementing creative PPI and the choice of technique will be unique to each piece of research and is reliant on several factors. These include the age and ability of the PPI group as well as the resource limitations of the project. Each method has benefits and drawbacks, which should be considered at the protocol-writing stage. However, given adequate funding, time and planning, creative PPI is a worthwhile and engaging method of generating ideas with end-users of research – ideas which may not be otherwise generated using traditional methods.

Data availability

No datasets were generated or analysed during the current study.

Abbreviations

Critical Appraisal Skills Programme

The Joanna Briggs Institute

National Institute of Health and Care Research

Public Advisory Group

Public and Patient Involvement

Web of Science

National Institute for Health and Care Research. What Is Patient and Public Involvement and Public Engagement? https://www.spcr.nihr.ac.uk/PPI/what-is-patient-and-public-involvement-and-engagement Accessed 01 Sept 2023.

Department of Health. Personal and Public Involvement (PPI) https://www.health-ni.gov.uk/topics/safety-and-quality-standards/personal-and-public-involvement-ppi#:~:text=The Health and Social Care Reform Act (NI) 2009 placed,delivery and evaluation of services . Accessed 01 Sept 2023.

National Institute for Health and Care Research. Policy Research Programme – Guidance for Stage 1 Applications https://www.nihr.ac.uk/documents/policy-research-programme-guidance-for-stage-1-applications-updated/26398 Accessed 01 Sept 2023.

Greenhalgh T, Hinton L, Finlay T, Macfarlane A, Fahy N, Clyde B, Chant A. Frameworks for supporting patient and public involvement in research: systematic review and co-design pilot. Health Expect. 2019. https://doi.org/10.1111/hex.12888

Article PubMed PubMed Central Google Scholar

Street JM, Stafinski T, Lopes E, Menon D. Defining the role of the public in health technology assessment (HTA) and HTA-informed decision-making processes. Int J Technol Assess Health Care. 2020. https://doi.org/10.1017/S0266462320000094

Article PubMed Google Scholar

Morrison C, Dearden A. Beyond tokenistic participation: using representational artefacts to enable meaningful public participation in health service design. Health Policy. 2013. https://doi.org/10.1016/j.healthpol.2013.05.008

Leavy P. Method meets art: arts-Based Research Practice. New York: Guilford; 2020.

Google Scholar

Seers K. Qualitative systematic reviews: their importance for our understanding of research relevant to pain. Br J Pain. 2015. https://doi.org/10.1177/2049463714549777

Lockwood C, Porritt K, Munn Z, Rittenmeyer L, Salmond S, Bjerrum M, Loveday H, Carrier J, Stannard D. Chapter 2: Systematic reviews of qualitative evidence. Aromataris E, Munn Z, editors. JBI Manual for Evidence Synthesis JBI. 2020. https://synthesismanual.jbi.global . https://doi.org/10.46658/JBIMES-20-03

CASP. CASP Checklists https://casp-uk.net/images/checklist/documents/CASP-Qualitative-Studies-Checklist/CASP-Qualitative-Checklist-2018_fillable_form.pdf (2022).

Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Res Psychol. 2006. https://doi.org/10.1191/1478088706qp063oa

Article Google Scholar

Byrne E, Elliott E, Saltus R, Angharad J. The creative turn in evidence for public health: community and arts-based methodologies. J Public Health. 2018. https://doi.org/10.1093/pubmed/fdx151

Cook S, Grozdanovski L, Renda G, Santoso D, Gorkin R, Senior K. Can you design the perfect condom? Engaging young people to inform safe sexual health practice and innovation. Sex Educ. 2022. https://doi.org/10.1080/14681811.2021.1891040

Craven MP, Goodwin R, Rawsthorne M, Butler D, Waddingham P, Brown S, Jamieson M. Try to see it my way: exploring the co-design of visual presentations of wellbeing through a workshop process. Perspect Public Health. 2019. https://doi.org/10.1177/1757913919835231

Fedorowicz S, Riley V, Cowap L, Ellis NJ, Chambers R, Grogan S, Crone D, Cottrell E, Clark-Carter D, Roberts L, Gidlow CJ. Using social media for patient and public involvement and engagement in health research: the process and impact of a closed Facebook group. Health Expect. 2022. https://doi.org/10.1111/hex.13515

Galler M, Myhrer K, Ares G, Varela P. Listening to children voices in early stages of new product development through co-creation – creative focus group and online platform. Food Res Int. 2022. https://doi.org/10.1016/j.foodres.2022.111000

Grindell C, Tod A, Bec R, Wolstenholme D, Bhatnagar R, Sivakumar P, Morley A, Holme J, Lyons J, Ahmed M, Jackson S, Wallace D, Noorzad F, Kamalanathan M, Ahmed L, Evison M. Using creative co-design to develop a decision support tool for people with malignant pleural effusion. BMC Med Inf Decis Mak. 2020. https://doi.org/10.1186/s12911-020-01200-3

Kearns Á, Kelly H, Pitt I. Rating experience of ICT-delivered aphasia rehabilitation: co-design of a feedback questionnaire. Aphasiology. 2020. https://doi.org/10.1080/02687038.2019.1649913

Kelemen M, Surman E, Dikomitis L. Cultural animation in health research: an innovative methodology for patient and public involvement and engagement. Health Expect. 2018. https://doi.org/10.1111/hex.12677

Keogh F, Carney P, O’Shea E. Innovative methods for involving people with dementia and carers in the policymaking process. Health Expect. 2021. https://doi.org/10.1111/hex.13213

Micsinszki SK, Buettgen A, Mulvale G, Moll S, Wyndham-West M, Bruce E, Rogerson K, Murray-Leung L, Fleisig R, Park S, Phoenix M. Creative processes in co-designing a co-design hub: towards system change in health and social services in collaboration with structurally vulnerable populations. Evid Policy. 2022. https://doi.org/10.1332/174426421X16366319768599

Valaitis R, Longaphy J, Ploeg J, Agarwal G, Oliver D, Nair K, Kastner M, Avilla E, Dolovich L. Health TAPESTRY: co-designing interprofessional primary care programs for older adults using the persona-scenario method. BMC Fam Pract. 2019. https://doi.org/10.1186/s12875-019-1013-9

Webber R, Partridge R, Grindell C. The creative co-design of low back pain education resources. Evid Policy. 2022. https://doi.org/10.1332/174426421X16437342906266

National Institute for Health and Care Research. A Researcher’s Guide to Patient and Public Involvement. https://oxfordbrc.nihr.ac.uk/wp-content/uploads/2017/03/A-Researchers-Guide-to-PPI.pdf Accessed 01 Nov 2023.

Selman L, Clement C, Douglas M, Douglas K, Taylor J, Metcalfe C, Lane J, Horwood J. Patient and public involvement in randomised clinical trials: a mixed-methods study of a clinical trials unit to identify good practice, barriers and facilitators. Trials. 2021 https://doi.org/10.1186/s13063-021-05701-y

Coulman K, Nicholson A, Shaw A, Daykin A, Selman L, Macefield R, Shorter G, Cramer H, Sydes M, Gamble C, Pick M, Taylor G, Lane J. Understanding and optimising patient and public involvement in trial oversight: an ethnographic study of eight clinical trials. Trials. 2020. https://doi.org/10.1186/s13063-020-04495-9

Ocloo J, Garfield S, Franklin B, Dawson S. Exploring the theory, barriers and enablers for patient and public involvement across health, social care and patient safety: a systematic review of reviews. Health Res Policy Sys. 2021. https://doi.org/10.1186/s12961-020-00644-3

National Institute for Health and Care Research. Briefing notes for researchers - public involvement in NHS, health and social care research. https://www.nihr.ac.uk/documents/briefing-notes-for-researchers-public-involvement-in-nhs-health-and-social-care-research/27371 Accessed 01 Nov 2023.

Download references

Acknowledgements

With thanks to the PHIRST-LIGHT public advisory group and consortium for their thoughts and contributions to the design of this work.

The research team is supported by a National Institute for Health and Care Research grant (PHIRST-LIGHT Reference NIHR 135190).

Author information

Olivia R. Phillips and Cerian Harries share joint first authorship.

Authors and Affiliations

Nottingham Centre for Public Health and Epidemiology, Lifespan and Population Health, School of Medicine, University of Nottingham, Clinical Sciences Building, City Hospital Campus, Hucknall Road, Nottingham, NG5 1PB, UK

Olivia R. Phillips, Jo Leonardi-Bee, Holly Knight & Joanne R. Morling

National Institute for Health and Care Research (NIHR) PHIRST-LIGHT, Nottingham, UK

Olivia R. Phillips, Cerian Harries, Jo Leonardi-Bee, Holly Knight, Lauren B. Sherar, Veronica Varela-Mato & Joanne R. Morling

School of Sport, Exercise and Health Sciences, Loughborough University, Epinal Way, Loughborough, Leicestershire, LE11 3TU, UK

Cerian Harries, Lauren B. Sherar & Veronica Varela-Mato

Nottingham Centre for Evidence Based Healthcare, School of Medicine, University of Nottingham, Nottingham, UK

Jo Leonardi-Bee

NIHR Nottingham Biomedical Research Centre (BRC), Nottingham University Hospitals NHS Trust, University of Nottingham, Nottingham, NG7 2UH, UK

Joanne R. Morling

You can also search for this author in PubMed Google Scholar

Contributions

Author contributions: study design: ORP, CH, JRM, JLB, HK, LBS, VVM, literature searching and screening: ORP, CH, JRM, data curation: ORP, CH, analysis: ORP, CH, JRM, manuscript draft: ORP, CH, JRM, Plain English Summary: ORP, manuscript critical review and editing: ORP, CH, JRM, JLB, HK, LBS, VVM.

Corresponding author

Correspondence to Olivia R. Phillips .

Ethics declarations

Ethics approval and consent to participate.

The Ethics Committee of the Faculty of Medicine and Health Sciences, University of Nottingham advised that approval from the ethics committee and consent to participate was not required for systematic review studies.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Electronic supplementary material

Below is the link to the electronic supplementary material.

40900_2024_580_MOESM1_ESM.docx

Additional file 1: Search strings: Description of data: the search strings and filters used in each of the 5 databases in this review

Additional file 2: Quality appraisal questions: Description of data: CASP quality appraisal questions

40900_2024_580_moesm3_esm.docx.

Additional file 3: Table 1: Description of data: elements of the data extraction table that are not in the main manuscript

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

Phillips, O.R., Harries, C., Leonardi-Bee, J. et al. What are the strengths and limitations to utilising creative methods in public and patient involvement in health and social care research? A qualitative systematic review. Res Involv Engagem 10 , 48 (2024). https://doi.org/10.1186/s40900-024-00580-4

Download citation

Received : 28 November 2023

Accepted : 25 April 2024

Published : 13 May 2024

DOI : https://doi.org/10.1186/s40900-024-00580-4

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

Public and patient involvement
Creative PPI
Qualitative systematic review

Research Involvement and Engagement

ISSN: 2056-7529

General enquiries: [email protected]

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Publications
Account settings

Preview improvements coming to the PMC website in October 2024. Learn More or Try it out now .

Advanced Search
Journal List
HHS Author Manuscripts

Qualitative Descriptive Methods in Health Science Research

Karen jiggins colorafi.

1 College of Nursing & Health Innovation, Arizona State University, Phoenix, AZ, USA

Bronwynne Evans

The purpose of this methodology paper is to describe an approach to qualitative design known as qualitative descriptive that is well suited to junior health sciences researchers because it can be used with a variety of theoretical approaches, sampling techniques, and data collection strategies.

Background:

It is often difficult for junior qualitative researchers to pull together the tools and resources they need to embark on a high-quality qualitative research study and to manage the volumes of data they collect during qualitative studies. This paper seeks to pull together much needed resources and provide an overview of methods.

A step-by-step guide to planning a qualitative descriptive study and analyzing the data is provided, utilizing exemplars from the authors’ research.

This paper presents steps to conducting a qualitative descriptive study under the following headings: describing the qualitative descriptive approach, designing a qualitative descriptive study, steps to data analysis, and ensuring rigor of findings.

Conclusions:

The qualitative descriptive approach results in a summary in everyday, factual language that facilitates understanding of a selected phenomenon across disciplines of health science researchers.

There is an explosion in qualitative methodologies among health science researchers because social problems lend themselves toward thoughtful exploration, such as when issues of interest are complex, have variables or concepts that are not easily measured, or involve listening to populations who have traditionally been silenced ( Creswell, 2013 ). Creswell (2013 , p. 48) suggests qualitative research is preferred when health science researchers seek to (a) share individual stories, (b) write in a literary, flexible style, (c) understand the context or setting of issues, (d) explain mechanisms or linkages in causal theories, (e) develop theories, and (f) when traditional quantitative statistical analyses do not fit the problem at hand. Typically, qualitative textbooks present learners with five approaches for qualitative inquiry: narrative, phenomenological, grounded theory, case study, and ethnography. Yet eminent researcher Margarete Sandelowski argues that in “the now vast qualitative methods literature, there is no comprehensive description of qualitative description as a distinctive method of equal standing with other qualitative methods, although it is one of the most frequently employed methodological approaches in the practice disciplines” ( Sandelowski, 2000 ). Qualitative description is especially amenable to health environments research because it provides factual responses to questions about how people feel about a particular space, what reasons they have for using features of the space, who is using particular services or functions of a space, and the factors that facilitate or hinder use.

The purpose of this methodology article is to define and outline qualitative description for health science researchers, providing a starter guide containing important primary sources for those who wish to become better acquainted with this methodological approach.

Describing the Qualitative Descriptive Approach

In two seminal articles, Sandelowski promotes the mainstream use of qualitative description ( Sandelowski, 2000 , 2010 ) as a well-developed but unacknowledged method which provides a “comprehensive summary of an event in the every day terms of those events” ( Sandelowski, 2000 , p. 336). Such studies are characterized by lower levels of interpretation than are high-inference qualitative approaches such as phenomenology or grounded theory and require a less “conceptual or otherwise highly abstract rendering of data” ( Sandelowski, 2000 , p. 335). Researchers using qualitative description “stay closer to their data and to the surface of words and events” ( Sandelowski, 2000 , p. 336) than many other methodological approaches. Qualitative descriptive studies focus on low-inference description, which increases the likelihood of agreement among multiple researchers. The difference between high and low inference approaches is not one of rigor but refers to the amount of logical reasoning required to move from a data-based premise to a conclusion. Researchers who use qualitative description may choose to use the lens of an associated interpretive theory or conceptual framework to guide their studies, but they are prepared to alter that framework as necessary during the course of the study ( Sandelowski, 2010 ). These theories and frameworks serve as conceptual hooks upon which hang study procedures, analysis, and re-presentation. Findings are presented in straightforward language that clearly describes the phenomena of interest.

Other cardinal features of the qualitative descriptive approach include (a) a broad range of choices for theoretical or philosophical orientations, (b) the use of virtually any purposive sampling technique (e.g., maximum variation, homogenous, typical case, criterion), (c) the use of observations, document review, or minimally to moderately structured interview or focus group questions, (d) content analysis and descriptive statistical analysis as data analysis techniques, and (e) the provision of a descriptive summary of the informational contents of the data organized in a way that best fits the data ( Neergaard, Olesen, Andersen, & Sondergaard, 2009 ; Sandelowski, 2000 , 2001 , 2010 ).

Designing a Qualitative Descriptive Study

Methodology.

Unlike traditional qualitative methodologies such as grounded theory, which are built upon a particular, prescribed constellation of procedures and techniques, qualitative description is grounded in the general principles of naturalistic inquiry. Lincoln and Guba suggest that naturalistic inquiry deals with the concept of truth, whereby truth is “a systematic set of beliefs, together with their accompanying methods” ( Lincoln & Guba, 1985 , p. 16). Using an often eclectic compilation of sampling, data collection, and data analysis techniques, the researcher studies something in its natural state and does not attempt to manipulate or interfere with the ordinary unfolding of events. Taken together, these practices lead to “true understanding” or “ultimate truth.” Table 1 describes design elements in two exemplar qualitative descriptive studies and serves as guide to the following discussion.

Example of Study Design Elements for Two Studies.

Theoretical Framework

Theoretical frameworks serve as organizing structures for research design: sampling, data collection, analysis, and interpretation, including coding schemes, and formatting hypothesis for further testing ( Evans, Coon, & Ume, 2011 ; Miles, Huberman, & Saldana, 2014 ; Sandelowski, 2010 ). Such frameworks affect the way in which data are ultimately viewed; qualitative description supports and allows for the use of virtually any theory ( Sandelowski, 2010 ). Creswell’s chapter on “Philosophical Assumptions and Interpretative Frameworks” (2013) is a useful place to gain understanding about how to embed a theory into a study.

Sampling choices place a boundary around the conclusions you can draw from your qualitative study and influence the confidence you and others place in them ( Miles et al., 2014 ). A hallmark of the qualitative descriptive approach is the acceptability of virtually any sampling technique (e.g., maximum variation where you aim to collect as many different cases as possible or homogenous whereby participants are mostly the same). See Miles, Huberman, and Saldana’s (2014 , p. 30) “Bounding the Collection of Data” discussion to select an appropriate and congruent purposive sampling strategy for your qualitative study.

Data Collection

In qualitative descriptive studies, data collection attempts to discover “the who, what and where of events” or experiences ( Sandelowski, 2000 , p.339). This includes, but is not limited to focus groups, individual interviews, observation, and the examination of documents or artifacts.

Data Analysis

Content analysis refers to a technique commonly used in qualitative research to analyze words or phrases in text documents. Hsieh and Shannon (2005) present three types of content analysis, any of which could be used in a qualitative descriptive study. Conventional content analysis is used in studies that aim to describe a phenomenon where exiting research and theory are limited. Data are collected from open-ended questions, read word for word, and then coded. Notes are made and codes are categorized. Directed content analysis is used in studies where existing theory or research exists: it can be used to further describe phenomena that are incomplete or would benefit from further description. Initial codes are created from theory or research and applied to data and unlabeled portions of text are given new codes. Summative content analysis is used to quantify and interpret words in context, exploring their usage. Data sources are typically seminal texts or electronic word searches.

Quantitative data can be included in qualitative descriptive studies if they aim to more adequately or fully describe the participants or phenomenon of interest. Counting is conceptualized as a “means to and end, not the end itself” by Sandelowski (2000 , p. 338) who emphasizes that careful descriptive statistical analysis is an effort to understand the content of data, not simply the means and frequencies, and results in a highly nuanced description of the patterns or regularities of the phenomenon of interest ( Sandelowski, 2000 , 2010 ). The use of validated measures can assist with generating dependable and meaningful findings, especially when the instrument (e.g., survey, questionnaire, or list of questions) used in your study has been used in others, helping to build theory, improve predictions, or make recommendations ( Miles et al., 2014 ).

Data Re-Presentation

In clear and simple terms, the “expected outcome of qualitative descriptive studies is a straight forward descriptive summary of the informational contents of data organized in a way that best fits the data” ( Sandelowski, 2000 , p. 339). Data re-presentation techniques allow for tremendous creativity and variation among researchers and studies. Several good resources are provided to spur imagination ( Miles et al., 2014 ; Munhall & Chenail, 2008 ; Wolcott, 2009 ).

Steps to Data Analysis

It is often difficult for junior health science researchers to know what to do with the volumes of data collected during a qualitative study and formal course work in traditional qualitative methods courses are typically sparse regarding the specifics of data management. It is for those reasons that this section of our article will provide a detailed description of the data analysis techniques used in qualitative descriptive methodology. The following steps are case examples of a study undertaken by one author (K.J.C.) after completing a data management course offered by another author (B.E.). Examples are offered from the two studies noted in Table 1 . It is offered in list format for general readability, but the qualitative researcher should recognize that qualitative analyses are iterative and recursive by nature.

Example of a Coding Manual.

Note . SES = socioeconomic status.

Reading from the left in Table 2 , codes were given a number and letter for use in marking sections of text. Next, the code name indicating a theme was entered in boldface type with a definition in the code immediately under it. The second column provided an exemplar of each code, along with a notation indicating where it was found in the data, so that coders could recognize instances of that particular code when they saw them.

The coding manual was tested against data gathered in a preliminary study and was revised as codes found to overlap or be missing entirely. We continued to revise it iteratively during the study as data collection and analysis proceeded and then used it to recode previously coded data. Using this procedure, it was used to revisit the data several times.

Each transcribed document was formatted with wide right margins that allowed the investigator to apply codes and generate marginal remarks by hand. Marginal remarks are handwritten comments entered by the investigator. They represent an attempt to stay “alert” about analysis, forming ideas and recording reactions to the meaning of what is seen in the data. Marginal remarks often suggest new interpretations, leads, and connections or distinctions with other parts of the data ( Miles et al., 2014 ). Such remarks are preanalytic and add meaning and clarity to transcripts.

Level 1 Coding With Meaning Units.

Conceptually similar codes were organized into categories (coding groups of coded themes that were increasingly abstract) through revisiting the theory framing the study (asking, “does this system of coding make sense according to the chosen theory?”). Miles et al. (2014) provide many examples for creating, categorizing, and revising codes, including highlighting a technique used by Corbin and Strauss ( Corbin & Strauss, 2015 ) that includes growing a list of codes and then applying a slightly more abstract label to the code, creating new categories of codes with each revision. This is often referred to as second-level or pattern coding, a way of grouping data into a smaller number of sets, themes, or constructs. During the analysis of data, patterns were generated and the researcher spent significant amounts of time with different categorizations, asking questions, checking relationships, and generally resisting the urge to be “locked too quickly into naming a pattern” ( Miles et al., 2014 , p. 69).
During this phase of analysis, pattern codes were revised and redefined in the coding manual and exemplars were used to clarify the understanding of each code. Miles et al. (2014) suggest that software can be helpful during this categorization (counting) step, so lists of observed engagement behaviors were also recorded in Dedoose software ( Dedoose, 2015 ) by code so that frequencies could be captured and analyzed. Despite the assistance of Dedoose, the researcher found that hand sorting codes into themes and categories was best done on paper.

An external file that holds a picture, illustration, etc.
Object name is nihms-1638767-f0001.jpg

Example of an analytic memo used in qualitative description analysis.

Data Matrix.

Note . The CLOX is an executive clock drawing task that tests cognition and was used in this study with the caregiver (CG) and the care recipient (CR). The CG Strain and the CG Gain scores were derived by the researcher through a qualitative content analysis ( Evans, Coon, & Belyea, 2006 ).

Finally, the data are re-presented in a creative but rigorous way that are judged to best fit the findings ( Miles et al., 2014 ; Sandelowski & Leeman, 2012 ; Stake, 2010 ; Wolcott, 2009 ).

Strategies for Ensuring Rigor of Findings

Many qualitative researchers do not provide enough information in their reports about the analytic strategies used to ensure verisimilitude or the “ring of truth” for the conclusions. Miles, Huberman, and Saldana (2014) outline 13 tactics for generating meaning from data and another 13 for testing or confirming findings. They also provide five standards for assessing the quality of conclusions. The techniques relied upon most heavily during a qualitative descriptive study ought to be addressed within the research report. It is important to establish “trustworthiness” and “authenticity” in qualitative research that are similar to the terms validity and reliability in quantitative research. The five standards (objectivity, dependability, credibility, transferability, and application) typically used in qualitative descriptive studies to assess quality and legitimacy (trustworthiness and authenticity) of the conclusions are discussed in the next sections ( Lincoln & Guba, 1985 ; Miles et al., 2014 ).

Objectivity

First, objectivity (confirmability) is conceptualized as relative neutrality and reasonable freedom from researcher bias and can be addressed by (a) describing the study’s methods and procedures in explicit detail, (b) sharing the sequence of data collection, analysis, and presentation methods to create an audit trail, (c) being aware of and reporting personal assumptions and potential bias, (d) retaining study data and making it available to collaborators for evaluation.

Dependability

Second, dependability (reliability or auditability) can be fostered by consistency in procedures across participants over time through various methods, including the use of semistructured interview questions and an observation data collection worksheet. Quality control ( Miles et al., 2014 ) can be fostered by:

deriving study procedures from clearly outlined research questions and conceptual theory, so that data analysis could be linked back to theoretical constructs;
clearly describing the investigator’s role and status at the research site;
demonstrating parallelism in findings across sources (i.e., interview vs. observation, etc.);
triangulation through the use of observations, interviews, and standardized measures to more adequately describe various characteristics of the sample population ( Denzin & Lincoln, 1994 );
demonstrating consistency in data collection for all participants (i.e., using the same investigator and preprinted worksheets, asking the same questions in the same order);
developing interview questions and observation techniques based on theory, revised, and tested during preliminary work;
developing a coding manual a priori to guide data analysis, containing a “start list” of codes derived from the theoretical framework and relevant literature ( Fonteyn et al., 2008 ; Hsieh & Shannon, 2005 ; Miles et al., 2014 ); and
developing a monitoring plan (fidelity) to ensure that junior researchers, especially do not go “beyond the data” ( Sandelowski, 2000 ) in interpretation. In keeping with the qualitative tradition, data analysis and collection should occur simultaneously, giving the investigator the opportunity to correct errors or make revisions.

Credibility

Third, credibility or verisimilitude (internal validity) is defined as the truth value of data: Do the findings of the study make sense ( Miles et al., 2014 , p. 312). Credibility in qualitative work promotes descriptive and evaluative understanding, which can be addressed by (a) providing context-rich “thick descriptions,” that is, the work of interpretation based on data ( Sandelowski, 2004 ), (b) checking with other practitioners or researchers that the findings “ring true,” (c) providing a comprehensive account, (d) using triangulation strategies, (e) searching for negative evidence, and (f) linking findings to a theoretical framework.

Transferability

Fourth, transferability (external validity or “fittingness”) speaks to whether the findings of your study have larger import and application to other settings or studies. This includes a discussion of generalizability. Sample to population generalizability is important to quantitative researchers and less helpful to qualitative researchers who seek more of an analytic or case-to-case transfer ( Miles et al., 2014 ). Nonetheless, transferability can be aided by (a) describing the characteristics of the participants fully so that comparisons with other groups may be made, (b) adequately describing potential threats to generalizability through sample and setting sections, (c) using theoretical sampling, (d) presenting findings that are congruent with theory, and (e) suggesting ways that findings from your study could be tested further by other researchers.

Application

Finally, Miles et al. (2014) speak to the utilization, application, or action orientation of the data. “Even if we know that a study’s findings are valid and transferable,” they write, “we still need to know what the study does for its participants and its consumers” ( Miles et al., 2014 , p. 314). To address application, findings of qualitative descriptive studies are typically made accessible to potential consumers of information through the publication of manuscripts, poster presentations, and summary reports written for consumers. In addition, qualitative descriptive study findings may stimulate further research, promote policy discussions, or suggest actual changes to a product or environment.

Implications for Practice

The qualitative description clarified and advocated by Sandelowski (2000 , 2010 ) is an excellent methodological choice for the healthcare environments designer, practitioner, or health sciences researcher because it provides rich descriptive content from the subjects’ perspective. Qualitative description allows the investigator to select from any number of theoretical frameworks, sampling strategies, and data collection techniques. The various content analysis strategies described in this paper serve to introduce the investigator to methods for data analysis that promote staying “close” to the data, thereby avoiding high-inference techniques likely challenging to the novice investigator. Finally, the devotion to thick description (interpretation based on data) and flexibility in the re-presentation of study findings is likely to produce meaningful information to designers and healthcare leaders. The practical, step-by-step nature of this article should serve as a starting guide to researchers interested in this technique as a way to answer their own burning questions.

Acknowledgments

The author would like to recognize the other members of her dissertation committee for their contributions to the study: Gerri Lamb, Karen Dorman Marek, and Robert Greenes.

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Research assistance for data analysis and manuscript development was supported by training funds from the National Institutes of Health/National Institute on Nursing Research (NIH/NINR), award T32 1T32NR012718-01 Transdisciplinary Training in Health Disparities Science (C. Keller, P.I.). The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH or the NINR. This research was supported through the Hartford Center of Gerontological Nursing Excellence at Arizona State University College of Nursing & Health Innovation.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Corbin J, & Strauss A (2015). Basics of qualitative research: Techniques and procedures for developing grounded theory (4th ed.). Thousand Oaks, CA: Sage. [ Google Scholar ]
Creswell J (2013). Qualitative inquiry and research design: Choosing among five approaches (3rd ed.). Los Angeles, CA: Sage. [ Google Scholar ]
Creswell J, & Plano-Clark V (2007). Designing and conducting mixed methods research . Thousand Oaks, CA: Sage. [ Google Scholar ]
Dedoose. (2015). Version 6.1.18, web application for managing, analyzing, and presenting qualitative and mixed method research data Los Angeles, CA: SocioCultural Research Consultants, LLC; Retrieved from www.dedoose.com [ Google Scholar ]
Denzin N, & Lincoln Y (1994). The handbook of qualitative research . New York, NY: Sage. [ Google Scholar ]
Denzin N, Lincoln Y, & Giardina M (2006). Disciplining qualitative research . International Journal of Qualitative Studies in Education , 19 , 769–782. [ Google Scholar ]
Evans BC, Belyea MJ, Coon DW, & Ume E (2012). Activities of daily living in Mexican American caregivers: The key to continuing informal care . Journal of Family Nursing , 18 , 439–466. doi:410.1177/1074840712450210. Epub 1074840 712452012 Jun 1074840712450226 [ PMC free article ] [ PubMed ] [ Google Scholar ]
Evans BC, Belyea MJ, & Ume E (2011). Mexican-American males providing personal care for their mothers . Hispanic Journal of Behavioral Sciences , 33 , 234–260. [ PMC free article ] [ PubMed ] [ Google Scholar ]
Evans B, Coon D, & Belyea M (2006). Worry among Mexican American caregivers of community-dwelling elders . Public Health Nursing , 23 ( 3 ), 284–291. doi: 10.1111/j.1525-1446.2006.230312.x [ CrossRef ] [ Google Scholar ]
Evans BC, Coon DW, & Ume E (2011). Use of theoretical frameworks as a pragmatic guide for mixed methods studies: A methodological necessity? Journal of Mixed Methods Research , 5 , 276–292. [ PMC free article ] [ PubMed ] [ Google Scholar ]
Fonteyn ME, Vettese M, Lancaster DR, & Bauer-Wu S (2008). Developing a codebook to guide content analysis of expressive writing transcripts . Applied Nursing Research , 21 , 165–168. doi: 10.1016/j.apnr.2006.08.005 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Hsieh H, & Shannon S (2005). Three approaches to qualitative content analysis . Qualitative Health Research , 15 , 1277–1288. [ PubMed ] [ Google Scholar ]
Jiggins Colorafi K (2015). Patient centered health information technology: Engagement with the plan of care among older adults with multi-morbidities . Retrieved from ProQuest. [ Google Scholar ]
Lincoln Y, & Guba E (1985). Naturalistic inquiry . New York, NY: Sage. [ Google Scholar ]
Miles M, Huberman M, & Saldana J (2014). Qualitative data analysis: A methods sourcebook (3rd ed.). Thousand Oaks, CA: Sage. [ Google Scholar ]
Munhall P, & Chenail R (2008). Qualitative research proposals and reports: A guide (3rd ed.). Boston, MA: Jones and Bartlett. [ Google Scholar ]
Neergaard MA, Olesen F, Andersen RS, & Sondergaard J (2009). Qualitative description - the poor cousin of health research? BMC Medical Research Methodology , 9 , 52. doi: 10.1186/1471-2288-9-52 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
Sandelowski M (2000). Whatever happened to qualitative description? Research in Nursing & Health , 23 , 334–340. [ PubMed ] [ Google Scholar ]
Sandelowski M (2001). Focus on research methods. Real qualitative researchers do not count: The use of numbers in qualitative research . Research in Nursing & Health , 24 , 230–240. [ PubMed ] [ Google Scholar ]
Sandelowski M (2004). Counting cats in Zanzibar . Research in Nursing & Health , 27 , 215–216. [ PubMed ] [ Google Scholar ]
Sandelowski M (2010). What’s in a name? Qualitative description revisited . Research in Nursing & Health , 33 , 77–84. doi: 10.1002/nur.20362 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Sandelowski M, & Leeman J (2012). Writing usable qualitative health research findings . Qualitative Health Research , 22 , 1404–1413. [ PubMed ] [ Google Scholar ]
Spradley J (1980). Patricipant observation . Belmont, CA: Wadsworth Cengage Learning. [ Google Scholar ]
Stake R (2010). Qualitative research: Studying how things work . New York, NY: The Guilford Press. [ Google Scholar ]
Wolcott H (2009). Writing up qualitative research (3rd ed.). Los Angeles, CA: Sage. [ Google Scholar ]

Open access
Published: 13 May 2024

Sexual and reproductive health implementation research in humanitarian contexts: a scoping review

Alexandra Norton 1 &
Hannah Tappis 2

Reproductive Health volume 21 , Article number: 64 ( 2024 ) Cite this article

85 Accesses

Metrics details

Meeting the health needs of crisis-affected populations is a growing challenge, with 339 million people globally in need of humanitarian assistance in 2023. Given one in four people living in humanitarian contexts are women and girls of reproductive age, sexual and reproductive health care is considered as essential health service and minimum standard for humanitarian response. Despite growing calls for increased investment in implementation research in humanitarian settings, guidance on appropriate methods and analytical frameworks is limited.

A scoping review was conducted to examine the extent to which implementation research frameworks have been used to evaluate sexual and reproductive health interventions in humanitarian settings. Peer-reviewed papers published from 2013 to 2022 were identified through relevant systematic reviews and a literature search of Pubmed, Embase, PsycInfo, CINAHL and Global Health databases. Papers that presented primary quantitative or qualitative data pertaining to a sexual and reproductive health intervention in a humanitarian setting were included.

Seven thousand thirty-six unique records were screened for inclusion, and 69 papers met inclusion criteria. Of these, six papers explicitly described the use of an implementation research framework, three citing use of the Consolidated Framework for Implementation Research. Three additional papers referenced other types of frameworks used in their evaluation. Factors cited across all included studies as helping the intervention in their presence or hindering in their absence were synthesized into the following Consolidated Framework for Implementation Research domains: Characteristics of Systems, Outer Setting, Inner Setting, Characteristics of Individuals, Intervention Characteristics, and Process.

This review found a wide range of methodologies and only six of 69 studies using an implementation research framework, highlighting an opportunity for standardization to better inform the evidence for and delivery of sexual and reproductive health interventions in humanitarian settings. Increased use of implementation research frameworks such as a modified Consolidated Framework for Implementation Research could work toward both expanding the evidence base and increasing standardization.

Plain English summary

Three hundred thirty-nine million people globally were in need of humanitarian assistance in 2023, and meeting the health needs of crisis-affected populations is a growing challenge. One in four people living in humanitarian contexts are women and girls of reproductive age, and provision of sexual and reproductive health care is considered to be essential within a humanitarian response. Implementation research can help to better understand how real-world contexts affect health improvement efforts. Despite growing calls for increased investment in implementation research in humanitarian settings, guidance on how best to do so is limited. This scoping review was conducted to examine the extent to which implementation research frameworks have been used to evaluate sexual and reproductive health interventions in humanitarian settings. Of 69 papers that met inclusion criteria for the review, six of them explicitly described the use of an implementation research framework. Three used the Consolidated Framework for Implementation Research, a theory-based framework that can guide implementation research. Three additional papers referenced other types of frameworks used in their evaluation. This review summarizes how factors relevant to different aspects of implementation within the included papers could have been organized using the Consolidated Framework for Implementation Research. The findings from this review highlight an opportunity for standardization to better inform the evidence for and delivery of sexual and reproductive health interventions in humanitarian settings. Increased use of implementation research frameworks such as a modified Consolidated Framework for Implementation Research could work toward both expanding the evidence base and increasing standardization.

Peer Review reports

Over the past few decades, the field of public health implementation research (IR) has grown as a means by which the real-world conditions affecting health improvement efforts can be better understood. Peters et al. put forward the following broad definition of IR for health: “IR is the scientific inquiry into questions concerning implementation – the act of carrying an intention into effect, which in health research can be policies, programmes, or individual practices (collectively called interventions)” [ 1 ].

As IR emphasizes real-world circumstances, the context within which a health intervention is delivered is a core consideration. However, much IR implemented to date has focused on higher-resource settings, with many proposed frameworks developed with particular utility for a higher-income setting [ 2 ]. In recognition of IR’s potential to increase evidence across a range of settings, there have been numerous reviews of the use of IR in lower-resource settings as well as calls for broader use [ 3 , 4 ]. There have also been more focused efforts to modify various approaches and frameworks to strengthen the relevance of IR to low- and middle-income country settings (LMICs), such as the work by Means et al. to adapt a specific IR framework for increased utility in LMICs [ 2 ].

Within LMIC settings, the centrality of context to a health intervention’s impact is of particular relevance in humanitarian settings, which present a set of distinct implementation challenges [ 5 ]. Humanitarian responses to crisis situations operate with limited resources, under potential security concerns, and often under pressure to relieve acute suffering and need [ 6 ]. Given these factors, successful implementation of a particular health intervention may require different qualities than those that optimize intervention impact under more stable circumstances [ 7 ]. Despite increasing recognition of the need for expanded evidence of health interventions in humanitarian settings, the evidence base remains limited [ 8 ]. Furthermore, despite its potential utility, there is not standardized guidance on IR in humanitarian settings, nor are there widely endorsed recommendations for the frameworks best suited to analyze implementation in these settings.

Sexual and reproductive health (SRH) is a core aspect of the health sector response in humanitarian settings [ 9 ]. Yet, progress in addressing SRH needs has lagged far behind other services because of challenges related to culture and ideology, financing constraints, lack of data and competing priorities [ 10 ]. The Minimum Initial Service Package (MISP) for SRH in Crisis Situations is the international standard for the minimum set of SRH services that should be implemented in all crisis situations [ 11 ]. However, as in other areas of health, there is need for expanded evidence for planning and implementation of SRH interventions in humanitarian settings. Recent systematic reviews of SRH in humanitarian settings have focused on the effectiveness of interventions and service delivery strategies, as well as factors affecting utilization, but have not detailed whether IR frameworks were used [ 12 , 13 , 14 , 15 ]. There have also been recent reviews examining IR frameworks used in various settings and research areas, but none have explicitly focused on humanitarian settings [ 2 , 16 ].

Given the need for an expanded evidence base for SRH interventions in humanitarian settings and the potential for IR to be used to expand the available evidence, a scoping review was undertaken. This scoping review sought to identify IR approaches that have been used in the last ten years to evaluate SRH interventions in humanitarian settings.

This review also sought to shed light on whether there is a need for a common framework to guide research design, analysis, and reporting for SRH interventions in humanitarian settings and if so, if there are any established frameworks already in use that would be fit-for-purpose or could be tailored to meet this need.

The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews was utilized to guide the elements of this review [ 17 ]. The review protocol was retrospectively registered with the Open Science Framework ( https://osf.io/b5qtz ).

Search strategy

A two-fold search strategy was undertaken for this review, which covered the last 10 years (2013–2022). First, recent systematic reviews pertaining to research or evaluation of SRH interventions in humanitarian settings were identified through keyword searches on PubMed and Google Scholar. Four relevant systematic reviews were identified [ 12 , 13 , 14 , 15 ] Table 1 .

Second, a literature search mirroring these reviews was conducted to identify relevant papers published since the completion of searches for the most recent review (April 2017). Additional file 1 includes the search terms that were used in the literature search [see Additional file 1 ].

The literature search was conducted for papers published from April 2017 to December 2022 in the databases that were searched in one or more of the systematic reviews: PubMed, Embase, PsycInfo, CINAHL and Global Health. Searches were completed in January 2023 Table 2 .

Two reviewers screened each identified study for alignment with inclusion criteria. Studies in the four systematic reviews identified were considered potentially eligible if published during the last 10 years. These papers then underwent full-text review to confirm satisfaction of all inclusion criteria, as inclusion criteria were similar but not fully aligned across the four reviews.

Literature search results were exported into a citation manager (Covidence), duplicates were removed, and a step-wise screening process for inclusion was applied. First, all papers underwent title and abstract screening. The remaining papers after abstract screening then underwent full-text review to confirm satisfaction of all inclusion criteria. Title and abstract screening as well as full-text review was conducted independently by both authors; disagreements after full-text review were resolved by consensus.

Data extraction and synthesis

The following content areas were summarized in Microsoft Excel for each paper that met inclusion criteria: publication details including author, year, country, setting [rural, urban, camp, settlement], population [refugees, internally displaced persons, general crisis-affected], crisis type [armed conflict, natural disaster], crisis stage [acute, chronic], study design, research methods, SRH intervention, and intervention target population [specific beneficiaries of the intervention within the broader population]; the use of an IR framework; details regarding the IR framework, how it was used, and any rationale given for the framework used; factors cited as impacting SRH interventions, either positively or negatively; and other key findings deemed relevant to this review.

As the focus of this review was on the approach taken for SRH intervention research and evaluation, the quality of the studies themselves was not assessed.

Twenty papers underwent full-text review due to their inclusion in one or more of the four systematic reviews and meeting publication date inclusion criteria. The literature search identified 7,016 unique papers. After full-text screening, 69 met all inclusion criteria and were included in the review. Figure 1 illustrates the search strategy and screening process.

Flow chart of paper identification

Papers published in each of the 10 years of the review timeframe (2013–2022) were included. 29% of the papers originated from the first five years of the time frame considered for this review, with the remaining 71% papers coming from the second half. Characteristics of included publications, including geographic location, type of humanitarian crisis, and type of SRH intervention, are presented in Table 3 .

A wide range of study designs and methods were used across the papers, with both qualitative and quantitative studies well represented. Twenty-six papers were quantitative evaluations [ 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 ], 17 were qualitative [ 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 ], and 26 used mixed methods [ 61 , 62 , 63 , 64 , 65 , 66 , 67 , 68 , 69 , 70 , 71 , 72 , 73 , 74 , 75 , 76 , 77 , 78 , 79 , 80 , 81 , 82 , 83 , 84 , 85 , 86 ]. Within the quantitative evaluations, 15 were observational, while five were quasi-experimental, five were randomized controlled trials, and one was an economic evaluation. Study designs as classified by the authors of this review are summarized in Table 4 .

Six papers (9%) explicitly cited use of an IR framework. Three of these papers utilized the Consolidated Framework for Implementation Research (CFIR) [ 51 , 65 , 70 ]. The CFIR is a commonly used determinant framework that—in its originally proposed form in 2009—is comprised of five domains, each of which has constructs to further categorize factors that impact implementation. The CFIR domains were identified as core content areas influencing the effectiveness of implementation, and the constructs within each domain are intended to provide a range of options for researchers to select from to “guide diagnostic assessments of implementation context, evaluate implementation progress, and help explain findings.” [ 87 ] To allow for consistent terminology throughout this review, the original 2009 CFIR domains and constructs are used.

Guan et al. conducted a mixed methods study to assess the feasibility and effectiveness of a neonatal hepatitis B immunization program in a conflict-affected rural region of Myanmar. Guan et al. report mapping data onto the CFIR as a secondary analysis step. They describe that “CFIR was used as a comprehensive meta-theoretical framework to examine the implementation of the Hepatitis B Virus vaccination program,” and implementation themes from multiple study data sources (interviews, observations, examination of monitoring materials) were mapped onto CFIR constructs. They report their results in two phases – Pre-implementation training and community education, and Implementation – with both anchored in themes that they had mapped onto CFIR domains and constructs. All but six constructs were included in their analysis, with a majority summarized in a table and key themes explored further in the narrative text. They specify that most concerns were identified within the Outer Setting and Process domains, while elements identified within the Inner Setting domain provided strength to the intervention and helped mitigate against barriers [ 70 ].

Sarker et al. conducted a qualitative study to assess provision of maternal, newborn and child health services to Rohingya refugees residing in camps in Cox’s Bazar, Bangladesh. They cite using CFIR as a guide for thematic analysis, applying it after a process of inductive and deductive coding to index these codes into the CFIR domains. They utilized three of the five CFIR domains (Outer Setting, Inner Setting, and Process), stating that the remaining two domains (Intervention Characteristics and Characteristics of Individuals) were not relevant to their analysis. They then proposed two additional CFIR domains, Context and Security, for use in humanitarian contexts. In contrast to Guan et al., CFIR constructs are not used nor mentioned by Sarker et al., with content under each domain instead synthesized as challenges and potential solutions. Regarding the CFIR, Sarker et al. write, “The CFIR guided us for interpretative coding and creating the challenges and possible solutions into groups for further clarification of the issues related to program delivery in a humanitarian crisis setting.” [ 51 ]

Sami et al. conducted a mixed methods case study to assess the implementation of a package of neonatal interventions at health facilities within refugee and internally displaced persons camps in South Sudan. They reference use of the CFIR earlier in the study than Sarker et al., basing their guides for semi-structured focus group discussions on the CFIR framework. They similarly reference a general use of the CFIR framework as they conducted thematic analysis. Constructs are referenced once, but they do not specify whether their application of the CFIR framework included use of domains, constructs, or both. This may be in part because they then applied an additional framework, the World Health Organization (WHO) Health System Framework, to present their findings. They describe a nested approach to their use of these frameworks: “Exploring these [CFIR] constructs within the WHO Health Systems Framework can identify specific entry points to improve the implementation of newborn interventions at critical health system building blocks.” [ 65 ]

Three papers cite use of different IR frameworks. Bolan et al. utilized the Theoretical Domains Framework in their mixed methods feasibility study and pilot cluster randomized trial evaluating pilot use of the Safe Delivery App by maternal and newborn health workers providing basic emergency obstetric and newborn care in facilities in the conflict-affected Maniema province of the Democratic Republic of the Congo (DRC). They used the Theroetical Domains Framework in designing interview questions, and further used it as the coding framework for their analysis. Similar to the CFIR, the Theoretical Domains Framework is a determinant framework that consists of domains, each of which then includes constructs. Bolan et al. utilized the Theoretical Domains Framework at the construct level in interview question development and at the domain level in their analysis, mapping interview responses to eight of the 14 domains [ 83 ]. Berg et al. report using an “exploratory design guided by the principles of an evaluation framework” developed by the Medical Research Council to analyze the implementation process, mechanisms of impact, and outcomes of a three-pillar training intervention to improve maternal and neonatal healthcare in the conflict-affected South Kivu province of the DRC [ 67 , 88 ]. Select components of this evaluation framework were used to guide deductive analysis of focus group discussions and in-depth interviews [ 67 ]. In their study of health workers’ knowledge and attitudes toward newborn health interventions in South Sudan, before and after training and supply provision, Sami et al. report use of the Conceptual Framework of the Role of Attitudes in Evidence-Based Practice Implementation in their analysis process. The framework was used to group codes following initial inductive coding analysis of in-depth interviews [ 72 ].

Three other papers cite use of specific frameworks in their intervention evaluation [ 19 , 44 , 76 ]. As a characteristic of IR is the use of an explicit framework to guide the research, the use of the frameworks in these three papers meets the intention of IR and serves the purpose that an IR framework would have in strengthening the analytical rigor. Castle et al. cite use of their program’s theory of change as a framework for a mixed methods evaluation of the provision of family planning services and more specifically uptake of long-acting reversible contraception use in the DRC. They describe use of the theory of change to “enhance effectiveness of [long-acting reversible contraception] access and uptake.” [ 76 ] Thommesen et al. cite use of the AAAQ (Availability, Accessibility, Acceptability and Quality) framework in their qualitative study assessing midwifery services provided to pregnant women in Afghanistan. This framework is focused on the “underlying elements needed for attainment of optimum standard of health care,” but the authors used it in this paper to evaluate facilitators and barriers to women accessing midwifery services [ 44 ]. Jarrett et al. cite use of the Centers for Disease Control and Prevention’s (CDC) Guidelines for Evaluating Public Health Surveillance Systems to explore the characteristics of a population mobility, mortality and birth surveillance system in South Kivu, DRC. Use of these CDC guidelines is cited as one of four study objectives, and commentary is included in the Results section pertaining to each criteria within these guidelines, although more detail regarding use of these guidelines or the authors’ experience with their use in the study is not provided [ 19 ].

Overall, 22 of the 69 papers either explicitly or implicitly identified IR as relevant to their work. Nineteen papers include a focus on feasibility (seven of which did not otherwise identify the importance of exploring questions concerning implementation), touching on a common outcome of interest in implementation research [ 89 ].

While a majority of papers did not explicitly or implicitly use an IR framework to evaluate their SRH intervention of focus, most identified factors that facilitated implementation when they were present or served as a barrier when absent. Sixty cite factors that served as facilitators and 49 cite factors that served as barriers, with just three not citing either. Fifty-nine distinct factors were identified across the papers.

Three of the six studies that explicitly used an IR framework used the CFIR, and the CFIR is the only IR framework that was used by multiple studies. As previously mentioned, Means et al. put forth an adaptation of the CFIR to increase its relevance in LMIC settings, proposing a sixth domain (Characteristics of Systems) and 11 additional constructs [ 2 ]. Using the expanded domains and constructs as proposed by Means et al., the 59 factors cited by papers in this review were thematically grouped into the six domains: Characteristics of Systems, Outer Setting, Inner Setting, Characteristics of Individuals, Intervention Characteristics, and Process. Within each domain, alignment with CFIR constructs was assessed for, and alignment was found with 29 constructs: eight of Means et al.’s 11 constructs, and 21 of the 39 standard CFIR constructs. Three factors did not align with any construct (all fitting within the Outer Setting domain), and 14 aligned with a construct label but not the associated definition. Table 5 synthesizes the mapping of factors affecting SRH intervention implementation to CFIR domains and constructs, with the construct appearing in italics if it is considered to align with that factor by label but not by definition.

Table 6 lists the CFIR constructs that were not found to have alignment with any factor cited by the papers in this review.

This scoping review sought to assess how IR frameworks have been used to bolster the evidence base for SRH interventions in humanitarian settings, and it revealed that IR frameworks, or an explicit IR approach, are rarely used. All four of the systematic reviews identified with a focus on SRH in humanitarian settings articulate the need for more research examining the effectiveness of SRH interventions in humanitarian settings, with two specifically citing a need for implementation research/science [ 12 , 13 ]. The distribution of papers across the timeframe included in this review does suggest that more research on SRH interventions for crisis-affected populations is taking place, as a majority of relevant papers were published in the second half of the review period. The papers included a wide range of methodologies, which reflect the differing research questions and contexts being evaluated. However, it also invites the question of whether there should be more standardization of outcomes measured or frameworks used to guide analysis and to facilitate increased comparison, synthesis and application across settings.

Three of the six papers that used an IR framework utilized the CFIR. Guan et al. used the CFIR at both a domain and construct level, Sarker et al. used the CFIR at the domain level, and Sami et al. did not specify which CFIR elements were used in informing the focus group discussion guide [ 51 , 65 , 70 ]. It is challenging to draw strong conclusions about the applicability of CFIR in humanitarian settings based on the minimal use of CFIR and IR frameworks within the papers reviewed, although Guan et al. provides a helpful model for how analysis can be structured around CFIR domains and constructs. It is worth considering that the minimal use of IR frameworks, and more specifically CFIR constructs, could be in part because that level of prescriptive categorization does not allow for enough fluidity in humanitarian settings. It also raises questions about the appropriate degree of standardization to pursue for research done in these settings.

The mapping of factors affecting SRH intervention implementation provides an example of how a modified CFIR framework could be used for IR in humanitarian contexts. This mapping exercise found factors that mapped to all five of the original CFIR domains as well as the sixth domain proposed by Means et al. All factors fit well within the definition for the selected domain, indicating an appropriate degree of fit between these existing domains and the factors identified as impacting SRH interventions in humanitarian settings. On a construct level, however, the findings were more variable, with one-quarter of factors not fully aligning with any construct. Furthermore, over 40% of the CFIR constructs (including the additional constructs from Means et al.) were not found to align with any factors cited by the papers in this review, also demonstrating some disconnect between the parameters posed by the CFIR constructs and the factors cited as relevant in a humanitarian context.

It is worth noting that while the CFIR as proposed in 2009 was used in this assessment, as well as in the included papers which used the CFIR, an update was published in 2022. Following a review of CFIR use since its publication, the authors provide updates to construct names and definitions to “make the framework more applicable across a range of innovations and settings.” New constructs and subconstructs were also added, for a total of 48 constructs and 19 subconstructs across the five domains [ 90 ]. A CFIR Outcomes Addendum was also published in 2022, based on recommendations for the CFIR to add outcomes and intended to be used as a complement to the CFIR determinants framework [ 91 ]. These expansions to the CFIR framework may improve applicability of the CFIR in humanitarian settings. Several constructs added to the Outer Setting domain could be of particular utility – critical incidents, local attitudes, and local conditions, each of which could help account for unique challenges faced in contexts of crisis. Sub-constructs added within the Inner Setting domain that seek to clarify structural characteristics and available resources would also be of high utility based on mapping of the factors identified in this review to the original CFIR constructs. As outcomes were not formally included in the CFIR until the 2022 addendum, a separate assessment of implementation outcomes was not undertaken in this review. However, analysis of the factors cited by papers in this review as affecting implementation was derived from the full text of the papers and thus captures content relevant to implementation determinants that is contained within the outcomes.

Given the demonstrated need for additional flexibility within an IR framework for humanitarian contexts, while not a focus of this review, it is worth considering whether a different framework could provide a better fit than the CFIR. Other frameworks have differing points of emphasis that would create different opportunities for flexibility but that do not seem to resolve the challenges experienced in applying the CFIR to a humanitarian context. As one example, the EPIS (Exploration, Preparation, Implementation, Sustainment) Framework considers the impact of inner and outer context on each of four implementation phases; while the constructs within this framework are broader than the CFIR, an emphasis on the intervention characteristics is missing, a domain where stronger alignment within the CFIR is also needed [ 92 ]. Alternatively, the PRISM (Practical, Robust Implementation and Sustainability Model) framework is a determinant and evaluation framework that adds consideration of context factors to the RE-AIM (Reach, Effectiveness, Adoption, Implementation, Maintenance) outcomes framework. It has a stronger emphasis on intervention aspects, with sub-domains to account for both organization and patient perspectives within the intervention. While PRISM does include aspects of context, external environment considerations are less robust and intentionally less comprehensive in scope, which would not provide the degree of alignment possible between the Characteristics of Systems and Outer Setting CFIR domains for the considerations unique to humanitarian environments [ 93 ].

Reflecting on their experience with the CFIR, Sarker et al. indicate that it can be a “great asset” in both evaluating current work and developing future interventions. They also encourage future research of humanitarian health interventions to utilize the CFIR [ 51 ]. The other papers that used the CFIR do not specifically reflect on their experience utilizing it, referring more generally to having felt that it was a useful tool [ 65 , 70 ]. On their use of an evaluation framework, Berg et al. reflected that it lent useful structure and helped to identify aspects affecting implementation that otherwise would have gone un-noticed [ 67 ]. The remaining studies that utilized an IR framework did not specifically comment on their experience with its use [ 72 , 83 ]. While a formal IR framework was not engaged by other studies, a number cite a desire for IR to contribute further detail to their findings [ 21 , 37 ].

In their recommendations for strengthening the evidence base for humanitarian health interventions, Ager et al. speak to the need for “methodologic innovation” to develop methodologies with particular applicability in humanitarian settings [ 7 ]. As IR is not yet routinized for SRH interventions, this could be opportune timing for the use of a standardized IR framework to gauge its utility. Using an IR framework to assess factors influencing implementation of the MISP in initial stages of a humanitarian response, and interventions to support more comprehensive SRH service delivery in protracted crises, could lend further rigor and standardization to SRH evaluations, as well as inform strategies to improve MISP implementation over time. Based on categorizing factors identified by these papers as relevant for intervention evaluation, there does seem to be utility to a modified CFIR approach. Given the paucity of formal IR framework use within SRH literature, it would be worth conducting similar scoping exercises to assess for explicit use of IR frameworks within the evidence base for other health service delivery areas in humanitarian settings. In the interim, the recommended approach from this review for future IR on humanitarian health interventions would be a modified CFIR approach with domain-level standardization and flexibility for constructs that may standardize over time with more use. This would enable use of a common analytical framework and vocabulary at the domain level for stakeholders to describe interventions and the factors influencing the effectiveness of implementation, with constructs available to use and customize as most appropriate for specific contexts and interventions.

This review had a number of limitations. As this was a scoping review and a two-part search strategy was used, the papers summarized here may not be comprehensive of those written pertaining to SRH interventions over the past 10 years. Papers from 2013 to 2017 that would have met this scoping review’s inclusion criteria may have been omitted due to being excluded from the systematic reviews. The review was limited to papers available in English. Furthermore, this review did not assess the quality of the papers included or seek to assess the methodology used beyond examination of the use of an IR framework. It does, however, serve as a first step in assessing the extent to which calls for implementation research have been addressed, and identify entry points for strengthening the science and practice of SRH research in humanitarian settings.

With one in 23 people worldwide in need of humanitarian assistance, and financing required for response plans at an all-time high, the need for evidence to guide resource allocation and programming for SRH in humanitarian settings is as important as ever [ 94 ]. Recent research agenda setting initiatives and strategies to advance health in humanitarian settings call for increased investment in implementation research—with priorities ranging from research on effective strategies for expanding access to a full range of contraceptive options to integrating mental health and psychosocial support into SRH programming to capturing accurate and actionable data on maternal and perinatal mortality in a wide range of acute and protracted emergency contexts [ 95 , 96 ]. To truly advance guidance in these areas, implementation research will need to be conducted across diverse humanitarian settings, with clear and consistent documentation of both intervention characteristics and outcomes, as well as contextual and programmatic factors affecting implementation.

Conclusions

Implementation research has potential to increase impact of health interventions particularly in crisis-affected settings where flexibility, adaptability and context-responsive approaches are highlighted as cornerstones of effective programming. There remains significant opportunity for standardization of research in the humanitarian space, with one such opportunity occurring through increased utilization of IR frameworks such as a modified CFIR approach. Investing in more robust sexual and reproductive health research in humanitarian contexts can enrich insights available to guide programming and increase transferability of learning across settings.

Availability of data and materials

The datasets analyzed during the current study are available from the corresponding author on reasonable request.

Abbreviations

Availability, Accessibility, Acceptability and Quality

Centers for Disease Control and Prevention

Consolidated Framework for Implementation Research

Democratic Republic of the Congo

Exploration, Preparation, Implementation, Sustainment

Implementation research

Low and middle income country

Minimum Initial Service Package

Practical, Robust Implementation and Sustainability Model

Preferred Reporting Items for Systematic Reviews and Meta-Analyses

Reach, Effectiveness, Adoption, Implementation, Maintenance

Sexual and reproductive health

World Health Organization

Peters DH, et al. Implementation research: what it is and how to do it. RESEARCH METHODS. 2013;347:7.

Means AR, et al. Evaluating and optimizing the consolidated framework for implementation research (CFIR) for use in low- and middle-income countries: a systematic review. Implement Sci. 2020;15(1):17.

Article PubMed PubMed Central Google Scholar

Alonge O, et al. How is implementation research applied to advance health in low-income and middle-income countries? BMJ Glob Health. 2019;4(2):e001257.

Ridde V, Pérez D, Robert E. Using implementation science theories and frameworks in global health. BMJ Glob Health. 2020;5(4):e002269.

Gaffey MF, et al. Delivering health and nutrition interventions for women and children in different conflict contexts: a framework for decision making on what, when, and how. Lancet (London, England). 2021;397(10273):543–54.

Article PubMed Google Scholar

Singh NS, et al. Delivering health interventions to women, children, and adolescents in conflict settings: what have we learned from ten country case studies? The Lancet. 2021;397(10273):533–42.

Article Google Scholar

Ager A, et al. Strengthening the evidence base for health programming in humanitarian crises. Science. 2014;345(6202):1290–2.

Article CAS PubMed Google Scholar

Blanchet K, et al. Evidence on public health interventions in humanitarian crises. The Lancet. 2017;390(10109):2287–96.

Sphere A. The Sphere Handbook | Standards for quality humanitarian response. 2018.

Google Scholar

Barot S. In a State of Crisis: Meeting the Sexual and Reproductive Health Needs of Women in Humanitarian Situations. Guttmacher Policy Rev. 2017;20:7.

Crisis, I.-A.W.G.f.R.H.i., Minimum Initial Service Package. 2020: https://www.unfpa.org/resources/minimum-initial-service-package-misp-srh-crisis-situations .

Casey SE. Evaluations of reproductive health programs in humanitarian settings: a systematic review. Confl Heal. 2015;9(1):S1.

Singh NS, et al. A long way to go: a systematic review to assess the utilisation of sexual and reproductive health services during humanitarian crises. BMJ Glob Health. 2018;3(2):e000682.

Singh NS, et al. Evaluating the effectiveness of sexual and reproductive health services during humanitarian crises: A systematic review. PLoS ONE. 2018;13(7):e0199300.

Warren E, et al. Systematic review of the evidence on the effectiveness of sexual and reproductive health interventions in humanitarian crises. BMJ Open. 2015;5(12):e008226.

Dadich A, Piper A, Coates D. Implementation science in maternity care: a scoping review. Implement Sci. 2021;16(1):16.

Tricco AC, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Ann Intern Med. 2018;169(7):467–73.

Devine A, et al. Strategies for the prevention of perinatal hepatitis B transmission in a marginalized population on the Thailand-Myanmar border: a cost-effectiveness analysis. BMC Infect Dis. 2017;17(1):552.

Jarrett P, et al. Evaluation of a population mobility, mortality, and birth surveillance system in South Kivu. Democratic Republic of the Congo Disasters. 2020;44(2):390–407.

PubMed Google Scholar

Logie CH, et al. A Psycho-Educational HIV/STI Prevention Intervention for Internally Displaced Women in Leogane, Haiti: Results from a Non-Randomized Cohort Pilot Study. PLoS ONE. 2014;9(2):e89836.

O’Laughlin KN, et al. A cohort study to assess a communication intervention to improve linkage to HIV care in Nakivale Refugee Settlement. Uganda Glob Public Health. 2021;16(12):1848–55.

Adam I. The influence of maternal health education on the place of delivery in conflict settings of Darfur. Sudan Conflict and Health. 2015;9:31.

Adam IF, et al. Relationship between implementing interpersonal communication and mass education campaigns in emergency settings and use of reproductive healthcare services: evidence from Darfur, Sudan. BMJ Open. 2015;5(9):e008285.

Edmond K, et al. Mobile outreach health services for mothers and children in conflict-affected and remote areas: a population-based study from Afghanistan. Arch Dis Child. 2020;105(1):18–25.

Nasir S, et al. Dissemination and implementation of the e-MCHHandbook, UNRWA’s newly released maternal and child health mobile application: a cross-sectional study. BMJ Open. 2020;10(3):e034885.

O’Laughlin KN, et al. Feasibility and acceptability of home-based HIV testing among refugees: a pilot study in Nakivale refugee settlement in southwestern Uganda. BMC Infect Dis. 2018;18(1):332.

Adam I. Evidence from cluster surveys on the association between home-based counseling and use of family planning in conflict-affected Darfur. Int J Gynecol Obstet. 2016;133(2):221–5.

Casey S, et al. Availability of long-acting and permanent family-planning methods leads to increase in use in conflict-affected northern Uganda: Evidence from cross-sectional baseline and endline cluster surveys. Glob Public Health. 2013;8(3):284–97.

Corna F, et al. Supporting maternal mental health of Rohingya refugee women during the perinatal period to promote child health and wellbeing: a field study in Cox’s Bazar. Intervention, the Journal of Mental Health & Psychosocial Support in Conflict Affected Areas. 2019;17(2):160–8.

Glass N, et al. Effectiveness of the Communities Care programme on change in social norms associated with gender-based violence (GBV) with residents in intervention compared with control districts in Mogadishu, Somalia. BMJ Open. 2019;9(3):e023819.

James LE, et al. Development and Testing of a Community-Based Intervention to Address Intimate Partner Violence among Rohingya and Syrian Refugees: A Social Norms-Based Mental Health-Integrated Approach. Int J Environ Res Public Health. 2021;18(21):11674.

Le Roux E, et al. Engaging with faith groups to prevent VAWG in conflict-affected communities: results from two community surveys in the DRC. BMC Int Health Hum Rights. 2020;20(1):27.

Morris CN, et al. When political solutions for acute conflict in Yemen seem distant, demand for reproductive health services is immediate: a programme model for resilient family planning and post-abortion care services. Sex Reprod Health Matters. 2019;27(2):1610279.

Anibueze AU, et al. Impact of counseling visual multimedia on use of family planning methods among displaced Nigerian families. Health Promot Int. 2022;37(3):daac060.

Doocy S, et al. Cash-based assistance and the nutrition status of pregnant and lactating women in the Somalia food crisis: A comparison of two transfer modalities. PLoS ONE. 2020;15(4):e0230989.

Article CAS PubMed PubMed Central Google Scholar

Draiko CV, et al. The effect of umbilical cord cleansing with chlorhexidine gel on neonatal mortality among the community births in South Sudan: a quasi-experimental study. Pan Afr Med J. 2021;38:78.

Edmond KM, et al. Can community health worker home visiting improve care-seeking and maternal and newborn care practices in fragile states such as Afghanistan? A population-based intervention study. BMC Med. 2018;16(1):106.

Edmond KM, et al. Conditional cash transfers to improve use of health facilities by mothers and newborns in conflict affected countries, a prospective population based intervention study from Afghanistan. BMC Pregnancy Childbirth. 2019;19(1):193.

Bakesiima R, et al. Effect of peer counselling on acceptance of modern contraceptives among female refugee adolescents in northern Uganda: A randomised controlled trial. PLoS ONE. 2021;16(9):e0256479.

Greene MC, et al. Evaluation of an integrated intervention to reduce psychological distress and intimate partner violence in refugees: Results from the Nguvu cluster randomized feasibility trial. PLoS ONE. 2021;16(6):e0252982.

Gupta J, et al. Gender norms and economic empowerment intervention to reduce intimate partner violence against women in rural Côte d’Ivoire: a randomized controlled pilot study. BMC Int Health Hum Rights. 2013;13(1):46.

Hossain M, et al. Working with men to prevent intimate partner violence in a conflict-affected setting: a pilot cluster randomized controlled trial in rural Côte d’Ivoire. BMC Public Health. 2014;14(1):339.

Vaillant J, et al. Engaging men to transform inequitable gender attitudes and prevent intimate partner violence: a cluster randomised controlled trial in North and South Kivu, Democratic Republic of Congo. BMJ Glob Health. 2020;5(5):e002223.

Thommesen T, et al. “The midwife helped me … otherwise I could have died”: women’s experience of professional midwifery services in rural Afghanistan - a qualitative study in the provinces Kunar and Laghman. BMC Pregnancy Childbirth. 2020;20(1):140.

Awasom-Fru A, et al. Doctors’ experiences providing sexual and reproductive health care at Catholic Hospitals in the conflict-affected North-West region of Cameroon: a qualitative study. Reprod Health. 2022;19(1):126.

Kabakian-Khasholian T, Makhoul J, Ghusayni A. “A person who does not have money does not enter”: a qualitative study on refugee women’s experiences of respectful maternity care. BMC Pregnancy and Childbirth. 2022;22(1):748.

Lilleston P, et al. Evaluation of a mobile approach to gender-based violence service delivery among Syrian refugees in Lebanon. Health Policy Plan. 2018;33(7):767–76.

Mugo NS, et al. Barriers Faced by the Health Workers to Deliver Maternal Care Services and Their Perceptions of the Factors Preventing Their Clients from Receiving the Services: A Qualitative Study in South Sudan. Matern Child Health J. 2018;22(11):1598–606.

Persson M, et al. A qualitative study on health care providers’ experiences of providing comprehensive abortion care in Cox’s Bazar, Bangladesh. Conflict and Health. 2021;15(1):6.

Phanwichatkul T, et al. The perceptions and practices of Thai health professionals providing maternity care for migrant Burmese women: An ethnographic study. Women Birth. 2022;35(4):e356–68.

Sarker M, et al. Effective maternal, newborn and child health programming among Rohingya refugees in Cox’s Bazar, Bangladesh: Implementation challenges and potential solutions. PLoS ONE. 2020;15(3):e0230732.

Tousaw E, et al. “Without this program, women can lose their lives”: migrant women’s experiences with the Safe Abortion Referral Programme in Chiang Mai. Thailand Reprod Health Matters. 2017;25(51):58–68.

Tousaw E, et al. “It is just like having a period with back pain”: exploring women’s experiences with community-based distribution of misoprostol for early abortion on the Thailand-Burma border. Contraception. 2018;97(2):122–9.

West L, et al. Factors in use of family planning services by Syrian women in a refugee camp in Jordan. Journal of Family Planning and Reproductive Health Care. 2017;43(2):96–102.

O’Connell KA, et al. Meeting the Sexual and Reproductive Health Needs of Internally Displaced Persons in Ethiopia’s Somali Region: A Qualitative Process Evaluation. Glob Health Sci Pract. 2022;10(5):e2100818.

Orya E, et al. Strengthening close to community provision of maternal health services in fragile settings: an exploration of the changing roles of TBAs in Sierra Leone and Somaliland. BMC Health Serv Res. 2017;17(1):460.

Perera SM, et al. Barriers to seeking post-abortion care in Paktika Province, Afghanistan: a qualitative study of clients and community members. BMC Womens Health. 2021;21(1):390.

Tanabe M, et al. Piloting community-based medical care for survivors of sexual assault in conflict-affected Karen State of eastern Burma. Confl Heal. 2013;7(1):12.

Tran NT, et al. Clinical outreach refresher trainings in crisis settings (S-CORT): clinical management of sexual violence survivors and manual vacuum aspiration in Burkina Faso, Nepal, and South Sudan. Reprod Health Matters. 2017;25(51):103–13.

Yankah E, et al. Feasibility and acceptability of mobile phone platforms to deliver interventions to address gender-based violence among Syrian adolescent girls and young women in Izmir. Turkey Vulnerable Children and Youth Studies. 2020;15(2):133–43.

Muuo S, et al. Barriers and facilitators to care-seeking among survivors of gender-based violence in the Dadaab refugee complex. Sex Reprod Health Matters. 2020;28(1):1722404.

Amsalu R, et al. Essential newborn care practice at four primary health facilities in conflict affected areas of Bossaso, Somalia: a cross-sectional study. Conflict and Health. 2019;13(13):27.

Myers A, et al. Facilitators and barriers in implementing the Minimum Initial Services Package (MISP) for reproductive health in Nepal post-earthquake. Conflict and Health. 2018;12:35.

Santo L.C.d, et al. Feasibility and acceptability of a video library tool to support community health worker counseling in rural Afghan districts: a cross-sectional assessment. Conflict and Health. 2020;14:56.

Sami S, et al. Understanding health systems to improve community and facility level newborn care among displaced populations in South Sudan: a mixed methods case study. BMC Pregnancy Childbirth. 2018;18(1):325.

Amsalu R, et al. Effectiveness of clinical training on improving essential newborn care practices in Bossaso, Somalia: a pre and postintervention study. BMC Pediatr. 2020;20(1):215.

Berg M, Mwambali SN, Bogren M. Implementation of a three-pillar training intervention to improve maternal and neonatal healthcare in the Democratic Republic Of Congo: a process evaluation study in an urban health zone. Glob Health Action. 2022;15(1):2019391.

Castillo M, et al. Turning Disaster into an Opportunity for Quality Improvement in Essential Intrapartum and Newborn Care Services in the Philippines: Pre- to Posttraining Assessments. Biomed Res Int. 2016;2016:1–9.

Foster AM, Arnott G, Hobstetter M. Community-based distribution of misoprostol for early abortion: evaluation of a program along the Thailand-Burma border. Contraception. 2017;96(4):242–7.

Guan TH, et al. Implementation of a neonatal hepatitis B immunization program in rural Karenni State, Myanmar: A mixed-methods study. PLoS ONE. 2021;16(12):e0261470.

Logie, C.H., et al., Mixed-methods findings from the Ngutulu Kagwero (agents of change) participatory comic pilot study on post-rape clinical care and sexual violence prevention with refugee youth in a humanitarian setting in Uganda. Global Public Health, 2022((Logie C.H., [email protected]) Factor-Inwentash Faculty of Social Work, University of Toronto, Toronto, Canada(Logie C.H., [email protected]) Women’s College Research Institute, Women’s College Hospital, Toronto, Canada(Logie C.H., carmen.l).

Sami S, et al. “You have to take action”: changing knowledge and attitudes towards newborn care practices during crisis in South Sudan. Reprod Health Matters. 2017;25(51):124–39.

Smith JR, et al. Clinical care for sexual assault survivors multimedia training: a mixed-methods study of effect on healthcare providers’ attitudes, knowledge, confidence, and practice in humanitarian settings. Confl Heal. 2013;7(1):14.

Stevens A, et al. Folate supplementation to prevent birth abnormalities: evaluating a community-based participatory action plan for refugees and migrant workers on the Thailand-Myanmar border. Public Health. 2018;161:83–9.

Nguyen Toan T, et al. Strengthening healthcare providers’ capacity for safe abortion and postabortion care services in humanitarian settings: lessons learned from the clinical outreach refresher training model (S-CORT) in Uganda, Nigeria, and the Democratic Republic of Congo. Conflict and Health. 2021;15(1):20.

Castle S, et al. Successful programmatic approaches to facilitating IUD uptake: CARE’s experience in DRC. BMC Womens Health. 2019;19(1):104.

Deitch J, et al. “They Love Their Patients”: Client Perceptions of Quality of Postabortion Care in North and South Kivu, the Democratic Republic of the Congo. Global health, science and practice. 2019;7(Suppl 2):S285–98.

Ferreyra C, et al. Evaluation of a community-based HIV test and start program in a conflict affected rural area of Yambio County, South Sudan. PLoS ONE. 2021;16(7):e0254331.

Ho LS, Wheeler E. Using Program Data to Improve Access to Family Planning and Enhance the Method Mix in Conflict-Affected Areas of the Democratic Republic of the Congo. Glob Health Sci Pract. 2018;6(1):161–77.

Klabbers RE, et al. Health Worker Perspectives on Barriers and Facilitators of Assisted Partner Notification for HIV for Refugees and Ugandan Nationals: A Mixed Methods Study in West Nile Uganda. AIDS Behav. 2021;25(10):3206–22.

Turner C, et al. Neonatal Intensive Care in a Karen Refugee Camp: A 4 Year Descriptive Study. PLoS ONE. 2013;8(8):e72721.

Vries Id, et al. Key lessons from a mixed-method evaluation of a postnatal home visit programme in the humanitarian setting of Gaza. Eastern Mediterr Health J. 2021;27(6):546–52.

Bolan NE, et al. mLearning in the Democratic Republic of the Congo: A Mixed-Methods Feasibility and Pilot Cluster Randomized Trial Using the Safe Delivery App. Global health, science and practice. 2018;6(4):693–710.

Khan MN, et al. Evaluating feasibility and acceptability of a local psycho-educational intervention for pregnant women with common mental problems affected by armed conflict in Swat, Pakistan: A parallel randomized controlled feasibility trial. Int J Soc Psychiatry. 2017;63(8):724–35.

Hynes M, et al. Using a quality improvement approach to improve maternal and neonatal care in North Kivu, Democratic Republic of Congo. Reprod Health Matters. 2017;25(51):140–50.

Gibbs A, et al. The impacts of combined social and economic empowerment training on intimate partner violence, depression, gender norms and livelihoods among women: an individually randomised controlled trial and qualitative study in Afghanistan. BMJ Glob Health. 2020;5(3):e001946.

Damschroder L, et al. Fostering implementation of health services research findings into practice: a consolidated framework for advancing implementation science. Implementation science: IS; 2009.

Moore GF, et al. Process evaluation of complex interventions: Medical Research Council guidance. BMJ. 2015;350:h1258.

Proctor E, et al. Outcomes for Implementation Research: Conceptual Distinctions, Measurement Challenges, and Research Agenda. Adm Policy Ment Health. 2011;38(2):65–76.

Damschroder LJ, et al. The updated Consolidated Framework for Implementation Research based on user feedback. Implement Sci. 2022;17(1):75.

Damschroder LJ, et al. Conceptualizing outcomes for use with the Consolidated Framework for Implementation Research (CFIR): the CFIR Outcomes Addendum. Implement Sci. 2022;17(1):7.

Aarons GA, Hurlburt M, Horwitz SM. Advancing a Conceptual Model of Evidence-Based Practice Implementation in Public Service Sectors. Administration and Policy in Mental Health and Mental Health Services Research. 2011;38(1):4–23.

Feldstein AC, Glasgow RE. A Practical, Robust Implementation and Sustainability Model (PRISM) for Integrating Research Findings into Practice. The Joint Commission Journal on Quality and Patient Safety. 2008;34(4):228–43.

OCHA. Global Humanitarian Overview 2023. 2022 [cited 2023 8/3/2023]; Available from: https://humanitarianaction.info/node/13073/article/glance-0 . Accessed 8 Mar 2023.

Kobeissi L, et al. Setting research priorities for sexual, reproductive, maternal, newborn, child and adolescent health in humanitarian settings. Confl Heal. 2021;15(1):16.

Save the, C., et al. Roadmap to Accelerate Progress for Every Newborn in Humanitarian Settings 2020 – 2024. 2020. p. 52.

Inter-Agency Working Group on Reproductive Health in, C. Inter-Agency Field Manual on Reproductive Health in Humanitarian Settings. 2018.

Download references

Acknowledgements

Not applicable.

The authors received no funding for this study.

Author information

Authors and affiliations.

Duke University School of Medicine, 40 Duke Medicine Circle, Durham, NC, 27710, USA

Alexandra Norton

Johns Hopkins Bloomberg School of Public Health, 615 N. Wolfe St, Baltimore, MD, 21205, USA

Hannah Tappis

You can also search for this author in PubMed Google Scholar

Contributions

AN and HT designed the scoping review. AN conducted the literature search. AN and HT screened records for inclusion. AN extracted data from included studies. Both authors contributed to synthesis of results. AN drafted the manuscript and both authors contributed to editorial changes.

Corresponding author

Correspondence to Alexandra Norton .

Ethics declarations

Ethics approval and consent to participate, consent for publication, competing interests.

The authors declare no competing interests.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Additional file 1.

. Literature search terms: Exact search terms used in literature search, with additional detail on the methodology to determine search terms and definitions used for each component of the search

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

Norton, A., Tappis, H. Sexual and reproductive health implementation research in humanitarian contexts: a scoping review. Reprod Health 21 , 64 (2024). https://doi.org/10.1186/s12978-024-01793-2

Download citation

Received : 06 November 2023

Accepted : 12 April 2024

Published : 13 May 2024

DOI : https://doi.org/10.1186/s12978-024-01793-2

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

Humanitarian settings

Reproductive Health

ISSN: 1742-4755

General enquiries: [email protected]

IMAGES

Qualitative Research in the Health Sciences: Methodologies, Methods and
Buy Qualitative Research In The Health Sciences: Methodologies, Methods
Qualitative Research: Definition, Types, Methods and Examples
6 Types of Qualitative Research Methods
What Is Qualitative Research
5 Qualitative Research Methods Every UX Researcher Should Know [+ Examples]

VIDEO

Metho 4: Good Research Qualities / Research Process / Research Methods Vs Research Methodology
Qualitative Methods Training
How Can I Begin Learning Research Methods and Methodologies?
An Introduction to Quantitative & Qualitative Data Research in Health Science
Quantitative and qualitative Research,Health education medical surgical nursing!
Cliniminds Recent Placements in clinical research and pharmacovigilance sector

COMMENTS

Qualitative Research in the Health Sciences
ABSTRACT. There is a growing interest in, and acceptance of, qualitative research approaches in the health science disciplines, both as standalone methodologies and integrated with quantitative designs in mixed methods approaches. This comprehensive text provides deeper knowledge and application of a wide range of methodologies, methods and ...
Qualitative Research in the Health Sciences: Methodologies, Methods and
This comprehensive text provides deeper knowledge and application of a wide range of methodologies, methods and processes, enabling readers to develop their qualitative research skills.Divided into two parts, focusing first on methodologies and then on methods and processes, the text also includes revision of essential aspects of quantitative ...
Qualitative Methods in Health Care Research
Significance of Qualitative Research. The qualitative method of inquiry examines the 'how' and 'why' of decision making, rather than the 'when,' 'what,' and 'where.'[] Unlike quantitative methods, the objective of qualitative inquiry is to explore, narrate, and explain the phenomena and make sense of the complex reality.Health interventions, explanatory health models, and medical-social ...
Qualitative Research in the Health Sciences: Methodologies, Methods and
Divided into two parts, focusing first on methodologies and then on methods and processes, the text also includes revision of essential aspects of quantitative research as they apply to mixed methods research and a discussion of the uptake of qualitative research in the health sciences. The methodologies covered include: Grounded Theory ...
How to use and assess qualitative research methods
Abstract. This paper aims to provide an overview of the use and assessment of qualitative research methods in the health sciences. Qualitative research can be defined as the study of the nature of phenomena and is especially appropriate for answering questions of why something is (not) observed, assessing complex multi-component interventions ...
Qualitative Research in the Health Sciences: Methodologies, Methods and
Qualitative Research in the Health Sciences: Methodologies, Methods and Processes. Part 1: Methodologies 1. Introduction Beverley Taylor 2. Grounded Theory Beverley Taylor 3. Historical Research Karen Francis 4. Ethnography Karen Francis 5. Phenomenology Beverley Taylor 6. Narrative Inquiry Beverley Taylor 7.
Qualitative Research in the Health Sciences
There is a growing interest in, and acceptance of, qualitative research approaches in the health science disciplines, both as standalone methodologies and integrated with quantitative designs in mixed methods approaches. This comprehensive text provides deeper knowledge and application of a wide range of methodologies, methods and processes, enabling readers to develop their qualitative ...
Introduction to qualitative research methods
INTRODUCTION. Qualitative research methods refer to techniques of investigation that rely on nonstatistical and nonnumerical methods of data collection, analysis, and evidence production. Qualitative research techniques provide a lens for learning about nonquantifiable phenomena such as people's experiences, languages, histories, and cultures.
A health researcher's guide to qualitative methodologies
Three important issues in understanding qualitative approaches to research are discussed: the partiality of our view of the world, deductive and inductive approaches to research, and the role of the researcher in the research process. The methodologies of phenomenology, grounded theory, discourse analysis, ethnography, ethnomethodology and ...
How to use qualitative methods for health and health services research
It is just as applicable to clinical trials as it is to health services research, enabling an in depth understanding of the problem that quantitative research alone cannot deliver. 1 It is imperative, however, that qualitative studies are well-designed with pre-determined methods to ensure reduction in research bias. While quantitative research ...
PDF HEALTH RESEARCH METHODOLOGY
Chapter 1: Research and scientific methods Empirical research in the health sciences can be qualitative or quantitative in nature. Generally, health science research deals with information of a quantitative nature, and this manual deals exclusively with this type of research. For the most part, this involves the
Qualitative Research in the Health Sciences: Methodologies, Methods an
There is a growing interest in, and acceptance of, qualitative research approaches in the health science disciplines, both as standalone methodologies and integrated with quantitative designs in mixed methods approaches. This comprehensive text provides deeper knowledge and application of a wide range of methodologies, methods and processes, enabling readers to develop their qualitative ...
Qualitative Methods in Health Policy and Systems Research: A Framework
Qualitative methodologies and methods are commonly used in health policy and systems research but have not been extensively characterized. ... Mixed methods in health sciences research: A practical primer ... MacFarlane A. (2014). A qualitative systematic review of studies using the normalization process theory to research implementation ...
Qualitative research in the health sciences: Methodologies, methods and
This comprehensive text provides deeper knowledge and application of a wide range of methodologies, methods and processes, enabling readers to develop their qualitative research skills.Divided into two parts, focusing first on methodologies and then on methods and processes, the text also includes revision of essential aspects of quantitative ...
Qualitative Research in the Health Sciences
Qualitative Research in the Health Sciences - Methodologies, Methods and Processes **** Bev Taylor and Karen Francis | Routledge | 298pp | £26.99 | ISBN: 978 0 4156 8261 9. Bev Taylor and Karen Francis, two nursing professors in Australia, describe the methods and processes of qualitative research used in the health sciences.
Qualitative Methods in Health Research
Summary This chapter contains sections titled: Qualitative methods in health research The link between theory and method So what is qualitative research? The uses of qualitative research Methods us... Skip to Article Content; Skip to Article Information; Search within. Search term. Advanced Search Citation ...
Qualitative Research in Healthcare: Necessity and Characteristics
Quantitative and qualitative research use different ways of exploring various social phenomena. Both research methodologies can be applied individually or in combination based on the research topic, with mixed quantitative and qualitative research methodologies becoming more widespread in recent years . Applying these 2 methods through a ...
What Is Qualitative Research?
Qualitative research involves collecting and analyzing non-numerical data (e.g., text, video, or audio) to understand concepts, opinions, or experiences. It can be used to gather in-depth insights into a problem or generate new ideas for research. Qualitative research is the opposite of quantitative research, which involves collecting and ...
Qualitative Research in the Health Sciences
While case study methodology is increasingly used for the study of occupation, many of its essential features are absent in published research, such as a definition of the bounded case in its context, use of multiple sources of data, and detailed information about the research process in the output.
Qualitative Research in the Health Sciences
There is a growing interest in, and acceptance of, qualitative research approaches in the health science disciplines, both as standalone methodologies and integrated with quantitative designs in mixed methods approaches. This comprehensive text provides deeper knowledge and application of a wide range of methodologies, methods and processes, enabling readers to develop their qualitative ...
Qualitative Methods in Health Policy and Systems Research: A Framework
Qualitative methodologies and methods are commonly used in health policy and systems research but have not been extensively characterized. ... Mixed methods in health sciences research: A practical primer ... MacFarlane A. (2014). A qualitative systematic review of studies using the normalization process theory to research implementation ...
Reformative concept analysis for applied psychology qualitative research
This article explains Reformative Concept Analysis (RCA), a novel method derived from nursing and political science concept analysis approaches, and reformed for applied psychology research. First, the role of concepts as epistemological vessels in psychological theory and practice is described.
Trust in healthcare: methodological and conceptual insights from mixed
Methods A two-phase mixed-method research design was implemented between January 2021 and April 2023. Phase 1 involved exploratory qualitative research to understand the local expressions and dimensions of patient trust in primary healthcare, with 25 semistructured interviews and 17 focus group discussions (120 participants) in eight villages in Bokeo Province.
What are the strengths and limitations to utilising creative methods in
There is increasing interest in using patient and public involvement (PPI) in research to improve the quality of healthcare. Ordinarily, traditional methods have been used such as interviews or focus groups. However, these methods tend to engage a similar demographic of people. Thus, creative methods are being developed to involve patients for whom traditional methods are inaccessible or non ...
Qualitative Descriptive Methods in Health Science Research
Describing the Qualitative Descriptive Approach. In two seminal articles, Sandelowski promotes the mainstream use of qualitative description (Sandelowski, 2000, 2010) as a well-developed but unacknowledged method which provides a "comprehensive summary of an event in the every day terms of those events" (Sandelowski, 2000, p. 336).Such studies are characterized by lower levels of ...
Sexual and reproductive health implementation research in humanitarian
Meeting the health needs of crisis-affected populations is a growing challenge, with 339 million people globally in need of humanitarian assistance in 2023. Given one in four people living in humanitarian contexts are women and girls of reproductive age, sexual and reproductive health care is considered as essential health service and minimum standard for humanitarian response.

Qualitative Research in the Health Sciences: Methodologies, Methods and Processes

Access to Document

Other files and links

Follow the authors

Image Unavailable

Qualitative Research in the Health Sciences: Methodologies, Methods and Processes 1st Edition

Editorial Reviews

About the Author

Product details

About the authors

Beverley J. Taylor

Top review from the United States

Qualitative research in the health sciences: Methodologies, methods and processes

Fingerprint

Account Options

Other editions - View all

Bibliographic information

Log in using your username and password

You are here

Data availability statement

Statistics from Altmetric.com

WHAT IS ALREADY KNOWN ON THIS TOPIC

WHAT THIS STUDY ADDS

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

Introduction and objective

Conceptual and methodological background

Patient and public involvement

Research sites

Research design

Data collection

Supplemental material

Ethical considerations

Qualitative exploration

Defining trust

Trust components in rural Lao PDR

Survey results

Statistical findings

Ethics statements

Ethics approval

Acknowledgments

Supplementary materials

Read the full text or download the PDF:

What are the strengths and limitations to utilising creative methods in public and patient involvement in health and social care research? A qualitative systematic review

Plain English Summary

Introduction

Public involvement

Search strategy

Inclusion criteria

Quality appraisal

Data extraction

Data analysis

Study characteristics

Types of creative methods

Thematic analysis

Limitations of creative PPI

Creative PPI lacks generalisation

Creative PPI has ethical issues

The use of creative PPI methods is impeded by external factors

Strengths of creative PPI

Creative PPI allows the unsayable to be said

Creative PPI methods are inclusive

Creative PPI methods are engaging

Creative PPI methods are cost and time efficient

Strengths and limitations of this review

Research recommendations

Data availability

Abbreviations

Acknowledgements

Author information

Authors and Affiliations

Contributions

Corresponding author

Ethics declarations

Consent for publication

Competing interests

Additional information

Electronic supplementary material

40900_2024_580_MOESM1_ESM.docx

Additional file 2: Quality appraisal questions: Description of data: CASP quality appraisal questions

Rights and permissions