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Deliberative engagement methods on health care priority-setting in a rural South African community.

ABSTRACT: Public engagement in priority-setting for health is increasingly recognized as a means to ensure more ethical, inclusive and legitimate decision-making processes, especially in the context of Universal Health Coverage where demands outweigh the available resources and difficult decisions need to be made. Deliberative approaches are often viewed as especially useful in considering social values and balancing trade-offs, however, implementation of deliberative engagement tools for priority-setting is scant, especially in low- and middle-income settings. In order to address this gap, we implemented a context-specific public deliberation tool in a rural community in South Africa to determine priorities for a health services package. Qualitative data were analysed from seven group deliberations using the engagement tool. The analysis focused on understanding the deliberative process, what the participants prioritized, the reasons for these selections and how negotiations took place within the groups. The deliberations demonstrated that the groups often considered curative services to be more important than primary prevention which related to the perceived lack of efficacy of existing health education and prevention programmes in leading to behaviour change. The groups engaged deeply with trade-offs between costly treatment options for HIV/AIDS and those for non-communicable disease. Barriers to healthcare access were considered especially important by all groups and some priorities included investing in more mobile clinics. This study demonstrates that deliberative engagement methods can be successful in helping communities balance trade-offs and in eliciting social values around health priorities. The findings from such deliberations, alongside other evidence and broader ethical considerations, have the potential to inform decision-making with regard to health policy design and implementation.

SUBMITTER: Tugendhaft A

PROVIDER: S-EPMC8428615 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundGlobally, as countries move towards universal health coverage (UHC), public participation in decisionmaking is particularly valuable to inform difficult decisions about priority setting and resource allocation. In South Africa (SA), which is moving towards UHC, public participation in decision-making is entrenched in policy documents yet practical applications are lacking. Engagement methods that are deliberative could be useful in ensuring the public participates in the priority setting process that is evidence-based, ethical, legitimate, sustainable and inclusive. Methods modified for the country context may be more relevant and effective. To prepare for such a deliberative process in SA, we aimed to modify a specific deliberative engagement tool - the CHAT (Choosing All Together) tool for use in a rural setting.MethodsDesktop review of published literature and policy documents, as well as 3 focus groups and modified Delphi method were conducted to identify health topics/issues and related interventions appropriate for a rural setting in SA. Our approach involved a high degree of community and policy-maker/expert participation. Qualitative data were analysed thematically. Cost information was drawn from various national sources and an existing actuarial model used in previous CHAT exercises was employed to create the board.ResultsBased on the outcomes, 7 health topics/issues and related interventions specific for a rural context were identified and costed for inclusion. These include maternal, new-born and reproductive health; child health; woman and child abuse; HIV/AIDS and tuberculosis (TB); lifestyle diseases; access; and malaria. There were variations in priorities between the 3 stakeholder groups, with community-based groups emphasizing issues of access. Violence against women and children and malaria were considered important in the rural context.ConclusionThe CHAT SA board reflects health topics/issues specific for a rural setting in SA and demonstrates some of the context-specific coverage decisions that will need to be made. Methodologies that include participatory principles are useful for the modification of engagement tools like CHAT and can be applied in different country contexts in order to ensure these tools are relevant and acceptable. This could in turn impact the success of the implementation, ultimately ensuring more effective priority setting approaches.

Project description:United States-based biorepositories are on the cusp of substantial change in regulatory oversight at the same time that they are increasingly including samples and data from large populations, e.g. all patients in healthcare system. It is appropriate to engage stakeholders from these populations in new governance arrangements. We sought to describe community recommendations for biorepository governance and oversight using deliberative community engagement (DCE), a qualitative research method designed to elicit lay perspectives on complex technical issues. We asked for stakeholders to provide input on governance of large biorepositories at the University of California (UC), a public university. We defined state residents as stakeholders and recruited residents from two large metropolitan areas, Los Angeles (LA) and San Francisco (SF). In LA, we recruited English and Spanish speakers; in SF the DCE was conducted in English only. We recruited individuals who had completed the 2009 California Health Interview Survey and were willing to be re-contacted for future studies. Using stratified random sampling (by age, education, race/ethnicity), we contacted 162 potential deliberants of whom 53 agreed to participate and 51 completed the 4-day DCE in June (LA) and September-October (SF), 2013. Each DCE included discussion among deliberants facilitated by a trained staff and simultaneously-translated in LA. Deliberants also received a briefing book describing biorepository operations and regulation. During the final day of the DCE, deliberants voted on governance and oversight recommendations using an audience response system. This paper describes 23 recommendations (of 57 total) that address issues including: educating the public, sharing samples broadly, monitoring researcher behavior, using informative consent procedures, and involving community members in a transparent process of biobank governance. This project demonstrates the feasibility of obtaining meaningful input on biorepository governance from diverse lay stakeholders. Such input should be considered as research institutions respond to changes in biorepository regulation.

Project description:BackgroundCommunity health worker (CHW) programs have been positioned as a way to meet the needs of those who experience marginalization and inequitable access to health care, and current global health narratives also emphasize their adaptable nature to meet growing health burdens in low-income settings. However, as CHW programs adopt more technical roles, the value of CHWs in building relationships with clients tends to be overlooked. More importantly, these programs are often reframed and redeployed without attending to the interests and needs of program clients themselves. We set out to gather perspectives of program and CHW engagement from clients of a maternal and child health program in rural South Africa.MethodsWe conducted 26 interviews with pregnant or recently-delivered clients of the Enable Mentor Mother program between February-March 2018. After obtaining informed consent, a trained research assistant conducted all interviews in the clients' home language, isiXhosa. Interviews, translated and transcribed into English, were organized and coded using ATLAS.ti software and thematically analyzed.ResultsWe found that clients' home-based interactions with Mentor Mothers were generally positive, and that these engagements were characterized by two core themes, instructive roles and supportive relationships.. Instructive roles facilitated the transfer of knowledge and uptake of new information for behavior change. Relationships were developed within the home visit setting, but also extended beyond routine visits, especially when clients required further instrumental support. Clients further discussed a sense of agency gained through these interactions, even in cases where they chose not to, or were unable to, heed their Mentor Mother's advice.ConclusionsThese findings highlight the important roles that CHWs can assume in providing both instructive and supportive care to clients; as deepening relationships may be key for encouraging behavior change, these findings pinpoint the need to bolster training and support for CHWs in similar programs. They also emphasize the importance of integrating more channels for client feedback into existing programs, to ensure that clients' voices are heard and accounted for in shaping ongoing engagement within the communities in which these programs operate.

Project description:Community engagement and involvement have been increasingly recognized as an ethical and valuable component of health science research over the past two decades. Progress has been accompanied by emerging standards that emphasize participation, two-way communication, inclusion, empowerment, and ownership. Although these are important and noble benchmarks, they can represent a challenge for research conducted in marginalized contexts. This community case study reports on the methods, outcomes, constraints and learning from an NGO-led community engagement project called Bucket Loads of Health, implemented in the Western Cape province of South Africa. The independent project team used multiple participatory visual methods to foster two-way communication between members of two disenfranchised communities, Enkanini and Delft, and a group of water microbiologists at Stellenbosch University who were conducting research in Enkanini. The project was carried out during the 2018 Western Cape water crisis, under the growing threat of "Day Zero". The resulting visual outputs illustrated the negative impacts of water shortage on health and wellbeing in these community settings and showcased scientific endeavors seeking to address them. Engagement included knowledge exchange combining body maps, role play performances and films created by the community members, with hand maps, posters and presentations produced by the scientists. Whereas these engagement tools enabled reciprocal listening between all groups, their ability to respond to the issues raised was hindered by constraints in resources and capacity beyond their control. An additional core objective of the project was to bring the impacts of water shortage in participating communities, and the work of the research team, to the attention of local government. The case study demonstrates the challenges that politically ambitious community engagement faces in being acknowledged by government representatives. We further the argument that research institutions and funders need to match professed commitments to engagement with training and resources to support researchers and community members in responding to the needs and aspirations surfaced through engagement processes. We introduce the concept of engagement integrity to capture the gap between recommended standards of community engagement and what is realistically achievable in projects that are constrained by funding, time, and political interest.

Project description:BackgroundPatient engagement is effective in promoting adherence to HIV care. In an effort to promote patient-centered care, we implemented an enhanced patient care (EPC) intervention that addresses a combination of system-level barriers including provider training, continuity of clinician-patient relationship, enhanced treatment dialogue and better clinic scheduling. We describe the initial implementation of the EPC intervention in a rural HIV clinic in Kenya, and the factors that facilitated its implementation.MethodsThe intervention occurred in one of the rural Academic Model Providing Healthcare (AMPATHplus) health facilities in Busia County in the western region of Kenya. Both qualitative and quantitative data were collected through training and meeting proceedings/minutes, a patient tracking tool, treatment dialogue and a peer confirmation tool. Qualitative data were coded and emerging themes on the implementation and adaptation of the intervention were developed. Descriptive analysis including percentages and means were performed on the quantitative data.ResultsOur analysis identified four key factors that facilitated the implementation of this intervention. (1) The smooth integration of the intervention as part of care that was facilitated by provider training, biweekly meetings between the research and clinical team and having an intervention that promotes the health facility agenda. (2) Commitment of stakeholders including providers and patients to the intervention. (3) The adaptability of the intervention to the existing context while still maintaining fidelity to the intervention. (4) Embedding the intervention in a facility with adequate infrastructure to support its implementation.ConclusionsThis analysis demonstrates the value of using mixed methods approaches to study the implementation of an intervention. Our findings emphasize how critical local support, local infrastructure, and effective communication are to adapting a new intervention in a clinical care program.

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Deliberative engagement methods on health care priority-setting in a rural South African community.

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