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

Background: HIV clinical trials are increasingly being conducted in sub-Saharan Africa. There is a tension between the pressure to increase levels of research participation whilst at the same time ensuring informed consent and the protection of participants’ rights. Objective: This review aimed to identify key issues that may affect HIV research, from the perspective of research participants, in order to scale up high quality ethical HIV research practice. Methods: A systematic review of qualitative studies was conducted using a pragmatic meta-aggregative approach developed by the Joanna Briggs Institute (JBI). The review included studies whose participants were current or former adult HIV research participants from sub-Saharan African countries. Nine databases were searched in June 2013, followed by hand searching of reference lists. Studies published between 1995 to present were considered. Eleven qualitative studies were included in the review. Methodological quality was assessed using the JBI's Qualitative Assessment and Review Instrument (QARI). Results: The 11 studies reported findings from 461 participants. Findings from each study were extracted and clustered into 8 categories based on similarities in meaning. These were further synthesized into 4 directive findings, set out below: i. Participation in HIV research is related to perceived personal benefits and benefits for wider society; ii. Research participation is influenced by fear of social or physical harm; iii. Poor understanding of research processes and concepts is common; iv. Social relationships and domestic contexts have a significant impact on HIV research participation and adherence. Discussion: The results show a willingness to participate in HIV research. Continued efforts are required to engage with communities to support research participation and to develop innovative ways to ensure and maintain informed consent. Conclusion: The majority of studies focused on experiences around research enrolment and retention. Research on participants’ experiences of research (trial) closure is lacking, indicating an area where future investigation is required.

During the last decade, teamwork has been addressed under the rationale of interprofessional practice or collaboration, highlighted by the attributes of this practice such as: interdependence of professional actions, focus on user needs, negotiation between professionals, shared decision making, mutual respect and trust among professionals, and acknowledgment of the role and work of the different professional groups. Teamwork and interprofessional collaboration have been pointed out as astrategy for effective organization of health care services as the complexity of healthcare requires integration of knowledge and practices from differente professional groups. This integration has a qualitative dimension that can be identified through the experiences of health professionals and to the meaning they give to teamwork. The objective of this systematic review was to synthesize the best available evidence on the experiences of health professionals regarding teamwork and interprofessional collaboration in primary health care settings. The populations included were all officially regulated health professionals that work in primary health settings: dentistry, medicine, midwifery, nursing, nutrition, occupational therapy, pharmacy, physical education, physiotherapy, psychology, social work and speech therapy. In addition to these professionals, community health workers, nursing assistants, licensed practical nurses and other allied health workers were also included. The phenomena of interest were experiences of health professionals regarding teamwork and interprofessional collaboration in primary health care settings. The context was primary health care settings that included health care centers, health maintenance organizations, integrative medicine practices, integrative health care, family practices, primary care organizations and family medical clinics. National health surgery as a setting was excluded. The qualitative component of the review considered studies that focused on qualitative data including designs such as phenomenology, grounded theory, ethnography, action research and feminist research. A three-step search strategy was utilized. Ten databases were searched for papers published from 1980 to June 2015. Studies published in English, Portuguese and Spanish were considered. Methodological quality was assessed using the Qualitative Assessment and Review Instrument developed by the Joanna Briggs Institute. All included studies received a score of at least 70% the questions in the instrument, 11 studies did not address the influence of the researcher on the research or vice-versa, and six studies did not present a statement locating the researcher culturally or theoretically. Qualitative findings were extracted using the Joanna Briggs Institute Qualitative Assessment and Review Instrument. Qualitative research findings were pooled using a pragmatic meta-aggregative approach and the Joanna Briggs Institute Qualitative Assessment and Review Instrument software. This review included 21 research studies, representing various countries and healthcare settings. There were 223 findings, which were aggregated into 15 categories, and three synthesized findings: CONCLUSIONS: This review shows that health professionals experience teamwork and interprofessional collaboration as a process in primary health care settings; its conditions, consequences (benefits and barriers), and finally shows its determinants. Health providers face enormous ideological, organizational, structural and relational challenges while promoting teamwork and interprofessional collaboration in primary health care settings. This review has identified possible actions that could improve implementation of teamwork and interprofessional collaboration in primary health care.

Investigators and institutions have begun to prepare for new federal protections of study participants set to take effect in 2018.

Autistic advocates have called for researchers to engage with the needs and experiences of autistic people when planning and designing research studies. The purpose of the present study was to better understand the experiences of autistic adults participating in a language research study and how researchers can design more accessible future studies. The present study was a secondary thematic analysis of data recorded during a larger study of spoken narratives by autistic adults. During virtual research interviews, participants frequently expressed comments about the nature of the research tasks and their experiences of participation in the study. The full interview transcripts were analyzed to identify data relating to participants' subjective experiences of research participation. Thematic analysis was applied to transcripts of all comments not directly elicited by the structured narrative prompts. Four main topics and their subthemes were established based on analysis of the data set: processing strategies, attitudes toward research, awareness of the research process, and self-reflective comments about the narrative tasks. The main topics and their subthemes are discussed to derive insight into the experiences of autistic research participants. The findings are especially relevant to researchers and practitioners who conduct spoken language tasks with autistic people. To make research participation more accessible and affirming for autistic people, researchers can share specific information about what to expect before, during, and after participation.

Review question/objective The objective of this review is to analyse and synthesise the best available evidence on the experiences of Indigenous people who engage in health care encounters in Western settings and contexts. The review question is: What are the experiences of Indigenous people engaged in health care encounters in Western settings and contexts? Inclusion Criteria Types of Participants Studies including two groups of participants, regardless of age or gender, will be considered for this systematic review. The first group is persons of Indigenous descent from the following countries and continents appearing most frequently in the literature: North America, South America, New Zealand, Australia, and Scandinavian countries. These countries include peoples such as First Nations, Native Americans, Metis, Inuit, North American Indians, South American Indians, Inca, Maori, Aboriginal and Torres Strait Islander peoples of Australia, and Sapmi. This list is not exhaustive, and any Indigenous population identified in a study will be included. Indigenous populations who immigrate to new countries will be excluded, given that immigrant status can confound Indigenous status. The second group of participants to be considered for inclusion is health care providers who work in Western settings and context, including, but not limited to, nurses, physicians, nutritionists, midwives, social workers, physiotherapists, occupational therapists, speech and language therapists, and respirologists. Phenomena of Interest The phenomenon of interest is the experience of Indigenous people in health care encounters in Western health care settings and context. Health care encounters refer to any interactions between an Indigenous person and a health care provider within the scope of Western health care services. All reasons for health encounters will be considered. Context The context will be Indigenous persons seeking health care services in Western settings and context. These services may be located within urban, rural, or remote health care settings where Western health care services are delivered.

BackgroundCommunity-based participatory research (CBPR) is a collaborative approach to research that involves the equitable participation of those affected by an issue. As the field of global public health grows, the potential of CBPR to build capacity and to engage communities in identification of problems and development and implementation of solutions in sub-Saharan Africa has yet to be fully tapped. The Orphaned and Separated Children’s Assessments Related to their Health and Well-Being (OSCAR) project is a longitudinal cohort of orphaned and non-orphaned children in Kenya. This paper will describe how CBPR approaches and principles can be incorporated and adapted into the study design and methods of a longitudinal epidemiological study in sub-Saharan Africa using this project as an example.MethodsThe CBPR framework we used involves problem identification, feasibility and planning; implementation; and evaluation and dissemination. This case study will describe how we have engaged the community and adapted CBPR methods to OSCAR’s Health and Well-being Project’s corresponding to this framework in four phases: 1) community engagement, 2) sampling and recruitment, 3) retention, validation, and follow-up, and 4) analysis, interpretation and dissemination.ResultsTo date the study has enrolled 3130 orphaned and separated children, including children living in institutional environments, those living in extended family or other households in the community, and street-involved children and youth. Community engagement and participation was integral in refining the study design and identifying research questions that were impacting the community. Through the participation of village Chiefs and elders we were able to successfully identify eligible households and randomize the selection of participants. The on-going contribution of the community in the research process has been vital to participant retention and data validation while ensuring cultural and community relevance and equity in the research agenda.ConclusionCBPR methods have the ability to enable and strengthen epidemiological and public health research in sub-Saharan Africa within the social, political, economic and cultural contexts of the diverse communities on the continent. This project demonstrates that adaptation of these methods is crucial to the successful implementation of a community-based project involving a highly vulnerable population.

Review Objective The objective of this systematic review is to establish what is best practice in home management of malaria among children under the age of five in developing countries.More specifically, the review question(s) is/are: •To assess the acceptability of home management of malaria for under-five children by caregivers; •To assess the appropriateness of different diagnostic techniques used in home management of malaria; •To evaluate the different strategies of distribution of antimalarial drugs for home management of malaria; •To assess the extent to which antimalarial drugs are appropriately dispensed and utilized in home management of malaria; and •To assess the referral links designed with the health institutions for severely ill children in home management of malaria Types of participants This component of the review will consider studies that include children under five and those adults responsible for their home management in developing countries. Types of interventions/Phenomena of Interest The systematic review will consider studies that examine the experiences involved in the home management of malaria.

Participatory research is one pathway for advancing the agenda of autistic advocates; however, little is known about the attitudes and values of autism researchers toward participatory research. This is a participatory research mixed-methods study of 215 survey respondents and 21 interviewees, all corresponding authors of published autism research papers. Our aim was to identify attitudes and practices about participatory research with autistic and non-autistic community partners. We found relatively low rates of various participatory strategies, moderate rates of barriers to participatory research, and moderate endorsement of the importance of participatory research. The interviews elucidated participatory research's best practices, complexity of barriers, and transformative power to positively impact autism research. Interviewees discussed the connection between participatory research and decisions about language. The survey responses indicated that 30% of autism researchers never used identity-first language. An emergent theme from the interviews explored the unique contribution of insider research-research in which an autistic person brings their expertise derived from lived experience and formal research training. This research provides descriptions of the current state of participatory autism research and guidance for its utilization.Lay AbstractParticipatory research is a way for autistic advocates, other community advocates, and researchers to work together for the benefit of the autistic community. Participatory research is when community members are partners throughout the research process, for example, selecting research questions, determining research methods, and interpreting results. However, little is known about autism researchers' attitudes and values about participatory research. This research describes the participatory research strategies autism researchers use, researchers' attitudes toward participatory research, and researchers' insights into best practices in participatory research. We looked at participatory autism research involving autistic people and non-autistic people who are connected to the autistic community, such as parents and teachers of autistic people. We surveyed 215 autism researchers to find out how much autism research is participatory, how important autism researchers think participatory research is, and what barriers get in the way of doing participatory autism research. On average, researchers who responded to the survey reported relatively low rates of participatory research, medium rates of barriers to participatory research, and medium agreement on the value of participatory research. The survey also asked what language they use regarding autism; a significant proportion of researchers in the study reported never using identity-first language (e.g., autistic person, as opposed to person-first language; person with autism). We also interviewed 21 of the researchers who responded to the survey. The interviews covered topics such as possible strategies to increase participatory research, examples of barriers to participatory research, and the interviewees' views on the importance of participatory research. Interviewees also discussed the connection between participatory research and decisions about language regarding autism. Several interviewees talked about the unique contributions of autistic academics, who have both lived experience as autistic people and formal research training.

This Brief Report discusses implementation strategies used to increase equity and access to research study participation among forcibly displaced migrants. Common barriers to research participation for this population (e.g. language access, informed consent) limit the perspective of migrants within immigrant and refugee health scholarship, reducing the applicability of findings to diverse populations. We aimed to characterize barriers and our responses to migrants' participation in research. Study participants included forcibly displaced migrant patients at the largest safety net hospital in New England. Two researchers analyzed field notes, reflexivity notes, and standard operating procedure adaptations. Four themes emerged including challenges of conducting qualitative interviews with interpreters, technology literacy, reimbursement woes, and role of the researcher. The goal of the study was to uplift the experience of migrant research participants, describe challenges in the research process, and present recommendations to migrant participation in research. We provide lessons learned for immigrant and refugee health scholars.

Inclusive, generalizable clinical research is vital to inform high-quality, evidence-based patient care. Yet, ethnic minority populations with high burdens of disease are often under-­represented in research, increasing health disparities already magnified by the COVID-19 pandemic. Efforts to address ethnic inequality in research participation include guidance from the National Institute for Health and Care Research (NIHR) and the US Food and Drug Administration (FDA). As these resources are not tailored to people with skin diseases, we aim to develop a skin-research-specific inclusion toolkit. We used a four-phase approach: (i) focus group discussions to identify barriers and enablers to participation of people from ethnic minority groups in skin research, (ii) a narrative literature review (involving searches of PubMed, Embase, Scopus and Google Scholar) to evaluate barriers and enablers of participation in medical research, (iii) development of a skin research inclusion toolkit, and (iv) dissemination of findings. Two focus group discussions (phase 1) involving six individuals with a skin disease from ethnic minority groups generated four themes. Enablers to participation included a positive value model (e.g. positive beliefs about the research value) and inclusive recruitment strategies (e.g. strong patient–recruiter relationships). Barriers included mistrust in research (e.g. lack of transparency on use of personal data) and social stigma. Our narrative literature review findings (phase 2) reinforced the four focus group themes. Social stigma may accentuate potential feelings of shame or embarrassment of a visible skin condition in people from ethnic minority groups. Mistrust in research is accentuated by a lack of information or understanding about research processes. To establish a positive value model, our narrative literature review findings recommend considering distinct motivators across ethnic groups. Hence, inclusive recruitment strategies should be codeveloped with populations of interest and culturally competent research teams to build lasting partnerships. Phases 1–2 informed the development of a skin research inclusion toolkit (phase 3). The toolkit recommends that researchers should (i) formulate an inclusion plan during study design (e.g. consider differences in the pathophysiology and epidemiology of the skin disease of interest across ethnic groups), (ii) consider study enrolment strategies (e.g. skin of colour education to dermatology healthcare professionals and patients to address disease-associated stigma and codevelop study materials including translations) and (iii) build study retention strategies (e.g. reimbursement for time and travel, timely feedback of findings to participants). In phase 4, the research findings were disseminated to focus group participants. In conclusion, we present a codesigned skin research inclusion toolkit, with recommendations for improving ethnic diversity in skin research cohorts to enable the generation of more representative findings. Future research will incorporate the real-world experiences of research teams and participants utilizing our bespoke toolkit.

Although volunteer research subjects play a crucial role in the development of new health technologies, there have been relatively few in-depth studies of what participation in research means to them, and how they manage and make sense of the research encounter. Using constructivist perspectives we analyze data from 15 United States-based women taking part in tests of prototype instrumentation with potential for cancer diagnosis, comparing their responses with findings from a larger study (using the same interview methodology) on United Kingdom-based women participating in a similar program. For both groups the prime concerns emerging at interview related to the social rather than the physical challenges of participation. Both deployed similar discursive strategies to manage these tensions.We suggest that, at least within the limits of the kind of low-risk, nontherapeutic research studied, lessons can be drawn for research management, particularly the key role of the researcher-researched working relationship in assuring mutually satisfactory outcomes.

BackgroundFor children and young people with eye and vision conditions, research is essential to advancing evidence-based recommendations in diagnosis, prevention, treatments and cures. Patient ‘experience’ reflects a key measure of quality in health care (Department of Health. High Quality Care for All: NHS Next Stage Review Final Report: The Stationery Office (2008)); research participant ‘experiences’ are equally important. Therefore, in order to achieve child-centred, high-quality paediatric ophthalmic research, we need to understand participation experiences. We conducted a systematic review of existing literature; our primary outcome was to understand what children and young people, parents and research staff perceive to support or hinder positive paediatric eye and vision research experiences. Our secondary outcomes explored whether any adverse or positive effects were perceived to be related to participation experiences, and if any interventions to improve paediatric ophthalmic research experiences had previously been developed or used.MethodsWe searched (from inception to November 2018, updated July 2020) in MEDLINE, Embase, CINAHL, Web of Science, NICE evidence and The Cochrane Library (CDSR and CENTRAL), key journals (by hand), grey literature databases and Google Scholar; looking for evidence from the perspectives of children, young people, parents and staff with experience of paediatric ophthalmic research. The National Institute for Health Research (NIHR) Participant in Research Experience Survey (PRES) (National Institute for Health Research. Research Participant Experience Survey Report 2018–19 (2019); National Institute for Health Research. Optimising the Participant in Research Experience Checklist (2019)) identified ‘five domains’ pivotal to shaping positive research experiences; we used these domains as an ‘a priori’ framework to conduct a ‘best fit’ synthesis (Carroll et al., BMC Med Res Methodol. 11:29, 2011; Carroll et al., BMC Med Res Methodol. 13:37, 2013).ResultsOur search yielded 13,020 papers; two studies were eligible. These evaluated research experiences from the perspectives of parents and staff; the perspectives of children and young people themselves were not collected. No studies were identified addressing our secondary objectives. Synthesis confirmed the experiences of parents were shaped by staff characteristics, information provision, trial organisation and personal motivations, concurring with the ‘PRES domains’ (National Institute for Health Research. Optimising the Participant in Research Experience Checklist (2019)) and generating additional dimensions to participation motivations and the physical and emotional costs of study organisation.ConclusionsThe evidence base is limited and importantly omits the voices of children and young people. Further research, involving children and young people, is necessary to better understand the research experiences of this population, and so inform quality improvements for paediatric ophthalmic research care and outcomes.Trial registrationReview registered with PROSPERO, International prospective register of systematic reviews: CRD42018117984. Registered on 11 December 2018.

The introduction of genomic research to, and emergence of biobanks in, sub-Saharan African countries raise ethical issues that require urgent attention. Firstly, there are concerns about whether individuals and communities would agree to participate in this type of research especially considering how communitarianism may affect their decision-making process. Secondly, there are controversies over whether the informed consent process as it is applied to other biomedical researches would be appropriate for genomic research in sub-Saharan Africa. And thirdly, the components of engagement of culturally distinct communities in genomic research are not yet clarified. Although community engagement during the recruitment stage have been described, there is dearth of information on effective strategies beyond this stage and which model is the most appropriate for sub-Saharan African settings. Therefore, my research explored the opinions of indigenous potential research participants on involvement in genomic research and to storage and export of their biospecimens, assessed the roles of community leadership in and perceptions of community engagement and informed consent processes in genomic research and biomedical researchers’ views. To obtain data for my qualitative study which is based on a methodological design adapted from grounded theory, I interviewed thirty biomedical researchers recruited from a research institution situated within the selected community, four community leaders and two community health workers; and conducted fifteen focus group sessions comprising 50 potential research participants organized by age and sex, namely: 1) adult (>30 years) males, 2) adult females, 3) youth (18-30 years) males, and 4) youth females. A mixed age-group was conducted to probe different views between the age groups. The data were transcribed verbatim and analyzed iteratively using constant comparative method to develop themes with the aid of Atlas-ti. The potential research participants would not agree to donation, storage or export of their samples unless they trusted the researchers to use their samples in an ethical manner, but the biomedical researchers felt that they would agree if the community leaders approved of the research. There was consensus between the adult research participants and the biomedical researchers on the appropriateness of blanket consent type for genomic research but the community leaders, health workers and the youths prefer either reconsenting or delegated consent. Married adult female participants would consult their husbands before agreeing to participate. All participants agreed on the gatekeeping role of the community leadership. The themes on community engagement reflected a strategic model of four stages, namely: community approach, community interphase, community integration, and post-research cordiality, as the crucial phases for ensuring effective community participation. There was discordance and clear division between the adults and youths regarding the decision to participate in genomic research based on commitment to communal values. Adults based their decision to participate on altruism and furthering the common good while youths based their decision on personal benefits and preferences and considered the views and welfare of family members and neighbours. This discordance suggests a generational shift, so I conceptualized a model of relative solidarity, which is different from communal solidarity typical of African communitarianism, for genomic research participation. To foster relational ethics, protect prospective research participants and ensure the success of genomic research, I proposed a strategic model of flow dynamics between the researcher(s), the community leaders, and potential research participants for effective community engagement. These findings suggest the need for a closer look at strategies for implementation of community engagement and informed consent in genomic research in this region. I recommend further studies on this emerging area of medical research.

Childrenʼs experiences of their postoperative pain management: a qualitative systematic review

Review Questions/Objective The overall aim of this comprehensive systematic review is to synthesise the best available evidence on the experience of lateral/horizontal violence in the profession of nursing and the effectiveness of programs/strategies meant to decrease its prevalence or mitigate its negative effects. Specifically, this review will seek to answer the following questions: •What is the experience of being a licensed nurse who is a victim of lateral/horizontal violence? •What is the experience of being a student nurse who is a victim of lateral/horizontal violence? •What is the impact of experiencing lateral/horizontal violence on job retention and job satisfaction? •What are the most effective interventions/strategies for decreasing the prevalence or mitigating the negative effects of lateral/horizontal violence on licensed nurses? Inclusion Criteria Types of Participants This review will consider studies with a focus on licensed nurses and student nurses. For purposes of this review ‘licensed nurse’ refers to a nurse who holds a license to practice nursing at any level. Due to the ambiguity of nomenclature, different titles for licensed nurse will be considered, including but not limited to registered nurse, practical nurse, vocational nurse.) Types of Interventions/Phenomena of Interest The qualitative component of this review will consider as phenomena of interest the actual experience of horizontal/lateral violence by licensed nurses and student nurses. The quantitative component of this review will examine interventions/strategies meant to decrease the prevalence or mitigate the effects of lateral/horizontal violence on licensed or student nurses. Some examples of programs or strategies reported in the literature are intense education programs, cognitive rehearsal strategies, zero tolerance policies and workshops. Context This review will consider research on the experience of lateral/horizontal violence in the profession of nursing and the efficacy/effectiveness of programs/strategies that are designed to decrease its prevalence or mitigate its negative effects in any setting where licensed or student nurses practise. Types of Outcomes The qualitative component of this review will include experiential accounts of being a nurse or student nurse who has experienced lateral/horizontal violence. The quantitative component of this review will consider studies that report outcomes such as but not limited to: •types and intensity/severity of effects of lateral/horizontal violence on licensed or student nurses •number of lateral/horizontal violence episodes/ prevalence of lateral/horizontal violence. •job satisfaction •job retention.