Participant views and experiences of participating in HIV research in sub-Saharan Africa: a qualitative systematic review

Nalubega, Sylivia; Evans, Catrin

doi:10.11124/jbisrir-2015-2051

Cited by 19 publications

(34 citation statements)

References 40 publications

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“…Of the 489 primary studies, 56 (11.5%) were included in more than one review, leaving a total of 429 unique studies.This degree of overlap in the primary studies is low, incorporating a covered area of 4.4% and a corrected covered area of 0.5% [43]. Six (23.1%) reviews [10,21,26,27,34,35] explicitly stated that they included only qualitative studies; the remainder included both quantitative and qualitative research. The focus of reviews varied in terms of health setting and types of research participation.…”

Section: Characteristics Of Included Studiesmentioning

confidence: 99%

“…The focus of reviews varied in terms of health setting and types of research participation. Sixteen (61.5%) reviews were limited to studies of trial participation [10, 18-20, 22-27, 29, 32, 33, 35, 38, 39], and the remaining ten either included a mix of primary research designs or the design was unclear [21,28,30,31,34,36,37,[40][41][42]. Fifteen (57.7%) reviews were related to specific health conditions or settings: cancer (n = 6), HIV (n = 3), mental health (n = 2), chronic obstructive pulmonary disease (COPD), emergency medicine, pregnancy and bio-banking (each n = 1).…”

Section: Characteristics Of Included Studiesmentioning

confidence: 99%

“…The most commonly reported was perceived personal benefits, including the perception of therapeutic benefits, closer monitoring and access to new treatments [10, 20-22, 25-27, 29-37, 39-41]. Whilst altruism was the second most commonly reported factor, discussed in terms of benefitting science [10, 20, 29-31, 34, 36, 37, 39-41], helping others [10,20,21,26,27,30,31,34,35,37,40,41] or altruism more generally [22], this was sometimes linked to personal benefit [27,31,33]. For example, patients with depression were less likely to participate if it might risk their own mental health, despite wanting to help others [27].…”

Section: Identified Psychosocial Themes Facilitators Of Research Partmentioning

confidence: 99%

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Why do patients take part in research? An overview of systematic reviews of psychosocial barriers and facilitators

Sheridan

Martin-Kerry

Hudson

et al. 2020

Trials

106

107

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Background: Understanding why people take part in health research is critical to improve research efficiency and generalisability. The aim of this overview of systematic reviews was to identify psychosocial determinants of research participation and map them to psychological theory and empirical recruitment research, to identify effective strategies to increase research participation. Methods: Qualitative and quantitative systematic reviews were systematically identified. No date or language limits were applied. Two reviewers independently selected reviews. Methodological quality was rated using AMSTAR, and poor-quality reviews (scoring 0-3) were excluded. Barriers and facilitators were coded to psychological theory (Theoretical Domains Framework) and empirical recruitment research (recruitment interventions that had been subjected to randomised controlled trial evaluation). Results: We included 26 systematic reviews (429 unique primary studies), covering a wide range of patient populations and health settings. We identified five groups of facilitators, of which three were dominant (potential for personal benefit, altruism, trust) and appear to be relevant across research setting and design. We identified nine groups of barriers, which were more dependent on the particular study (context, population, design). Two determinants (participant information, social influences) were found to be both barriers and facilitators. Barriers and facilitators could be coded to the Motivation and Opportunity components of the Theoretical Domains Framework; only one was coded to a Capability component. There was some overlap between psychosocial determinants and empirical recruitment research, but some barriers and facilitators had not been tested at all. Conclusions: Identifying effective recruitment strategies could increase the efficiency and generalisability of primary research. We identified a number of barriers and facilitators that could be addressed by researchers. There is a need for more research to identify effective recruitment strategies that draw on the psychosocial facilitators and barriers identified in this overview.

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Section: Characteristics Of Included Studiesmentioning

confidence: 99%

Section: Characteristics Of Included Studiesmentioning

confidence: 99%

Section: Identified Psychosocial Themes Facilitators Of Research Partmentioning

confidence: 99%

See 1 more Smart Citation

Why do patients take part in research? An overview of systematic reviews of psychosocial barriers and facilitators

Sheridan

Martin-Kerry

Hudson

et al. 2020

Trials

106

107

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“…While Ubuntu is described as being of southern African origin, 29 others argue that the notion is widely prevalent in other parts of Africa, but is referred to using different terminology. [30][31][32] ''Analytically speaking, 'Ubuntu' is a term used to describe the quality or essence of being a person among many sub-Saharan tribes of the Bantu language family.'' 33 Communitarianism further affirms that individuals are socially embedded, and that personhood is woven into the community with communal good taking priority over individual priorities.…”

Section: Introductionmentioning

confidence: 99%

“…32 There has been a generational shift demonstrated between the older African generation who subscribe more commonly to the above communal approach to ethics and research in general, while the youth appear to be more enmeshed with Western Philosophical thought that places a higher value on personal autonomy and selfinterest. 31,32 The relative solidarity model allows for the amalgamation of these contrasting worldviews. This model works in the context of responsive communitarianism, as opposed to classical or authoritarian communitarianism.…”

Section: Introductionmentioning

confidence: 99%

Tygerberg Research Ubuntu-Inspired Community Engagement Model: Integrating Community Engagement into Genomic Biobanking

Moodley

Beyer

2019

Biopreservation and Biobanking

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Introduction: Community engagement (CE) is an ethical imperative in research, but the knowledge base for what constitutes effective and ethically sound CE is limited. Ubuntu, as a component of responsive communitarianism where communal welfare is valued together with individual autonomy, is useful in furthering our understanding of effective CE and how it could best be achieved. Similarly, a relative solidarity model serves as a compromise between extreme individualism and extreme communalism and is more appropriate in a heterogenous African context. Approaching CE from an Ubuntu philosophical perspective in southern Africa is particularly important in genomic biobanking, given the implications for individuals, families, and communities. Discussion: CE is often implemented in a tokenistic manner as an ancillary component of research. Understanding consent information is challenging where genomic biobanking is concerned due to scientific complexity. We started a process of CE around genomic biobanking and conducted empirical research in an attempt to develop a model to promote effective and ethically sound CE, using relative solidarity to create a nuanced application of Ubuntu. The TRUCE model is an eight-step model that uses social mapping to identify potential communities, establishes the scope of CE, and requires that communities are approached early. Co-creation strategies for CE are encouraged and co-ownership of knowledge production is emphasized. Recruiting and engaging communities at each stage of research is necessary. Evaluation and adaptation of CE strategies are included. Discussion and dissemination of results after the research is completed are encouraged. Conclusions: There is a significant gap between the theory of CE and its authentic application to research in Africa. This Ubuntu-inspired model facilitates bridging that gap and is particularly suited to genomic biobanking. The CE model enhances and complements the consent process and should be integrated into research as a funding and regulatory requirement where applicable.

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Moving to Another World: Understanding the Impact of Clinical Trial Closure on Research Participants Living With HIV in Uganda

Nalubega¹,

Cox²,

Mugerwa³

et al. 2019

J Assoc Nurses AIDS Care

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Participant views and experiences of participating in HIV research in sub-Saharan Africa: a qualitative systematic review

Abstract: All the included studies focused on experiences around research enrolment and participation (retention); however there is a complete evidence gap on experiences of trial closure.

Cited by 19 publications

References 40 publications

Why do patients take part in research? An overview of systematic reviews of psychosocial barriers and facilitators

Why do patients take part in research? An overview of systematic reviews of psychosocial barriers and facilitators

Tygerberg Research Ubuntu-Inspired Community Engagement Model: Integrating Community Engagement into Genomic Biobanking

Moving to Another World: Understanding the Impact of Clinical Trial Closure on Research Participants Living With HIV in Uganda

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