Community-based participatory research: understanding a promising approach to addressing knowledge gaps in palliative care

Riffin, Catherine; Kenien, Cara; Ghesquiere, Angela; Dorime, Ashley; Villanueva, Carolina; Gardner, Daniel S.; Callahan, Jean; Capezuti, Elizabeth; Reid, M. Carrington

doi:10.21037/apm.2016.05.03

Cited by 37 publications

(42 citation statements)

References 29 publications

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“…Particular approaches, notably Participatory Action Research, Community Based Participatory Research and emancipatory research, were suggested as being effective in promoting involvement. 69–72 These approaches used principles of equity, power-sharing and reciprocal transfer of knowledge and skills. 49,55,73 However, the evidence was limited because they had not been widely or comprehensively used.…”

Section: Resultsmentioning

confidence: 99%

Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review

et al. 2019

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Background: Patient/carer involvement in palliative care research has been reported as complex, difficult and less advanced compared to other areas of health and social care research. There is seemingly limited evidence on impact and effectiveness. Aim: To examine the evidence regarding patient/carer involvement in palliative care research and identify the facilitators, barriers, impacts and gaps in the evidence base. Design: Qualitative evidence synthesis using an integrative review approach and thematic analysis. Data sources: Electronic databases were searched up to March 2018. Additional methods included searching websites and ongoing/unpublished studies, author searching and contacting experts. Eligibility criteria were based on the SPICE (Setting, Perspective, Intervention, Comparison, Evaluation) framework. Two quality assessments on methodology and involvement were undertaken. Results: A total of 93 records were included. Eight main themes were identified, mainly concerning facilitators and barriers to effective patient and carer involvement in palliative care research: definitions/roles, values/principles, organisations/culture, training/support, networking/groups, perspectives/diversity, relationships/communication and emotions/impact. Evidence on the impact of involvement was limited, but when carried out effectively, involvement brought positive benefits for all concerned, improving the relevance and quality of research. Evidence gaps were found in non-cancer populations and collaborative/user-led involvement. Conclusion: Evidence identified suggests that involvement in palliative care research is challenging, but not dissimilar to that elsewhere. The facilitators and barriers identified relate mainly to the conduct of researchers at an individual level; in particular, there exists a reluctance among professionals to undertake involvement, and myths still perpetuate that patients/carers do not want to be involved. A developed infrastructure, more involvement-friendly organisational cultures and a strengthening of the evidence base would also be beneficial.

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Section: Resultsmentioning

confidence: 99%

Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review

et al. 2019

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“…CBPR has been recommended as a promising strategy for PC research that aligns with the priorities of stakeholders, as a means to deliver tailored and appropriate care to underserved communities. 66 Phase 1 engaged community members in the planning phase, serving as the first step in forming relationships and building trust with the community, and in obtaining community guidance into the study. Community Advisory Group (CAG) members were recruited with the assistance of the community health educator at BMH who had strong ties with community groups.…”

Section: Methodsmentioning

confidence: 99%

Developing and Testing the Feasibility of a Culturally Based Tele-Palliative Care Consult Based on the Cultural Values and Preferences of Southern, Rural African American and White Community Members: A Program by and for the Community

et al. 2020

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Purpose: Lack of appreciation of cultural differences may compromise care for seriously ill minority patients, yet culturally appropriate models of palliative care (PC) are not currently available in the United States. Rural patients with life-limiting illness are at high risk of not receiving PC. Developing a PC model that considers the cultural preferences of rural African Americans (AAs) and White (W) citizens is crucial. The goal of this study was to develop and determine the feasibility of implementing a culturally based PC tele-consult program for rural Southern AA and W elders with serious illness and their families, and assess its acceptability to patients, their family members, and clinicians. Methods: This was a three-phase study conducted in rural Beaufort, South Carolina, from January 2013 to February 2016. We used Community-Based Participatory Research methods, including a Community Advisory Group (CAG) with equal numbers of AA and W members, to guide the study. Phase 1: Cultural values and preferences were determined through ethnic-based focus groups comprising family members (15 W and 16 AA) who had cared for a loved one who died within the past year. We conducted a thematic analysis of focus group transcripts, focused on cultural values and preferences, which was used as the basis for the study protocol. Phase 2: Protocol Development: We created a protocol team of eight CAG members, two researchers, two hospital staff members, and a PC physician. The PC physician explained the standard clinical guidelines for conducting PC consults, and CAG members proposed culturally appropriate programmatic recommendations for their ethnic group for each theme. All recommendations were incorporated into an ethnic-group specific protocol. Phase 3: The culturally based PC protocol was implemented by the PC physician via telehealth in the local hospital. We enrolled patients age ‡ 65 with a life-limiting illness who had a family caregiver referred by a hospitalist to receive the PC consult. To assess feasibility of program delivery, including its acceptability to patients, caregivers, and hospital staff, using Donebedian's Structure-Process-Outcome model, we measured patient/caregiver satisfaction with the culturally based consult by using an adaptation of FAMCARE-2. Results: Phase 1: Themes between W and AA were (1) equivalent: for example, disrespectful treatment of patients and family by hospital physicians; (2) similar but with variation: for example, although religion and church were important to both groups, and pastors in both ethnic groups helped family face the reality of end of life, AA considered the church unreservedly central to every aspect of life; (3) divergent, for example, AAs strongly believed that hope and miracles were always a possibility and that God was the decider, a theme not present in the

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“…According to Israel et al (), the use of CBPA is relevant in the humanities, medicine, public health, and social sciences (Riffin et al, , p. 219). Additionally, the concept is used interchangeably with “community involved,” “collaborative,” “participatory,” or “community‐centred” approaches (Riffin et al, ). A fundamental characteristic of CBPA is the wilful engagement with community members and the sharing of unique local perspectives and local knowledge in community transformation and sustainability.…”

Section: The Philosophy Of Community Economic Development Local Econmentioning

confidence: 99%

Stakeholder model for community economic development in alleviating poverty in municipalities in South Africa

Ndaguba

Hanyane

2018

Journal of Public Affairs

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Governments globally have several responsibilities to its citizen, and one of these responsibilities is the improvement in the living standard and to stimulate social wellbeing and sustainability in communities. A meta-review of over a 100 article was conducted of both the qualitative and quantitative method related to the antecedents to business models, community economic development, and poverty alleviation. The basis for the paper is the proposition of the stakeholder model for implementing Community Economic Development in municipalities for alleviating poverty in South Africa.

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Community-based participatory research: understanding a promising approach to addressing knowledge gaps in palliative care

Cited by 37 publications

References 29 publications

Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review

Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review

Developing and Testing the Feasibility of a Culturally Based Tele-Palliative Care Consult Based on the Cultural Values and Preferences of Southern, Rural African American and White Community Members: A Program by and for the Community

Stakeholder model for community economic development in alleviating poverty in municipalities in South Africa

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