Project description:BackgroundThis paper aimed to explore the palliative care (PC) needs and barriers to access among cancer patients in a rural region of North India with a high cancer burden.MethodsA Participatory action research (PAR) approach was employed. Situational assessment, community sensitization workshops (CSWs) and door-to-door surveys were planned, conducted and developed over three PAR cycles. A parallel convergent mixed-methods approach was adopted wherein the quantitative data from door-to-door surveys and qualitative data from CSWs and investigator field notes were collected and analyzed to provide a comprehensive understanding of PC needs and barriers to access. Descriptive statistics and thematic analysis were used.ResultsA total of 27 CSWs involving 526 stakeholders were conducted. A total of 256 cancer patients were assessed for PC needs and symptom burden using the Supportive and Palliative Care Indicators (SPICT-4ALL) and the Edmonton Symptom Assessment System (ESAS) tool, respectively. Based on the SPICT assessment, all patients (n = 256) satisfied general and/or cancer-specific indicators for PC. The majority (56.6%) had ≥ one moderate-severe symptom, with the most common symptoms being tiredness, pain and loss of appetite. Analysis of qualitative findings generated three themes: unmet needs, burden of caregiving, and barriers and challenges. Cancer affected all domains of patients' and their families' lives, contributing to biopsychosocial suffering. Social stigma, discrimination, sympathizing attitudes and lack of emotional and material support contributed to psychosocial suffering among cancer patients and their caregivers. Lack of awareness, nearby healthcare facilities, transportation, essential medicines, trained manpower and education in PC, collusion, fear of social discrimination, faulty perceptions and misconceptions about cancer made access to PC difficult.ConclusionsThe study emphasize the need for and provide a roadmap for developing context-specific and culturally appropriate CBPC services to address the identified challenges and needs. The findings point towards education of CHWs in PC; improving community awareness about cancer, PC, government support schemes; ensuring an uninterrupted supply of essential medicines; and developing active linkages within the community and with NGOs to address the financial, transportation, educational, vocational and other social needs as some of the strategies to ensure holistic CBPC services.Trial registrationClinical Trial Registry of India (CTRI/2023/04/051357).

Project description:BackgroundEnvironmental health risks are disproportionately colocated with communities in poverty and communities of color. In some cases, participatory research projects have effectively addressed structural causes of health risk in environmental justice (EJ) communities. However, many such projects fail to catalyze change at a structural level.ObjectivesThis review employs Critical Interpretive Synthesis (CIS) to theorize specific elements of participatory research for environmental health that effectively prompt structural change in EJ communities.MethodsAcademic database search was used to identify peer-reviewed literature describing participatory research with EJ communities to address environmental health. Synthetic constructs were developed iteratively related to study characteristics, design elements, and outcomes; and data were extracted for included records. Statistical analyses were performed to assess correlations between study design elements and structural change outcomes. Through critical, comparative, and contextual analyses of the "structural change" case study group and "non- structural change" group, informed by relevant theoretical literature, a synthesizing argument was generated.ResultsFrom 505 total records identified, eligibility screening produced 232 case study articles, representing 154 case studies, and 55 theoretical articles for synthesis. Twenty-six case studies resulted in a structural change outcome. The synthesizing argument states that participatory research with EJ communities may be more likely to result in structural change when a) community members hold formal leadership roles; b) project design includes decision-makers and policy goals; and c) long term partnerships are sustained through multiple funding mechanisms. The assumption of EJ community benefit through research participation is critically examined.DiscussionRecommended future directions include establishing structural change as a goal of participatory research, employing participatory assessment of community benefit, and increased hiring of faculty of color at research institutions. The power, privilege, and political influence that academic institutions are able to leverage in partnership with EJ communities may be as valuable as the research itself. https://doi.org/10.1289/EHP6274.

Project description:Background and objectivesOver 50% of New Yorkers living with human immunodeficiency virus (HIV) are 50 years old or older, and the emotional and physical consequences of being a long-term survivor are significant. This study aimed to identify the practical needs of long-term survivors and older people with HIV (consumers) in New York State and develop recommendations addressing those needs.Research design and methodsThe HIV + Aging/LTS/Perinatally Diagnosed Subcommittee of the Consumer Advisory and Quality Advisory committees in the New York State AIDS Institute used community-based participatory research (CBPR) methods to design a statewide survey about the care needs of consumers in New York State. This survey, open to consumers, clinicians, and supportive services providers, was launched in June 2021 using Qualtrics. Participants provided demographic data and chose the 3 most important barriers and recommendations from each of 10 categories of issues affecting health care and supportive services. Consumers provided information about their HIV diagnosis and other health conditions. Responses were characterized using basic descriptive statistics.ResultsParticipants included 124 consumers from 26 counties, 20 clinicians, and 24 supportive service providers. Among consumers, 67% were cisgender men, 27% were African American, and 65% were both long-term survivors and older people with HIV. On average consumers had been diagnosed with HIV for 27 years. Participants were concerned with clinical care coordination, housing needs, cultural representation in mental health services, and financial support of consumers.Discussion and implicationsCBPR is an effective approach to developing consumer-generated recommendations to improve HIV care for long-term survivors and older people with HIV. Town hall formats informed survey design, enabled broad coverage of topics, and ensured that focus remained on priorities most important to consumers. The first quality initiative arising from the study was a routine screening of long-term survivors of HIV to identify functional decline and enhance referral pathways and care linkages.

Project description:ImportanceThe high prevalence of hypertension calls for broad, multisector responses that foster prevention and care services, with the goal of leveraging high-quality treatment as a means of reducing hypertension incidence. Health care system improvements require stakeholder input from across the care continuum to identify gaps and inform interventions that improve hypertension care service, delivery, and retention; system dynamics modeling offers a participatory research approach through which stakeholders learn about system complexity and ways to model sustainable system-level improvements.ObjectiveTo assess the association of simulated interventions with hypertension care retention rates in the Nigerian primary health care system using system dynamics modeling.Design, setting, and participantsThis decision analytical model used a participatory research approach involving stakeholder workshops conducted in July and October 2022 to gather insights and inform the development of a system dynamics model designed to simulate the association of various interventions with retention in hypertension care. The study focused on the primary health care system in Nigeria, engaging stakeholders from various sectors involved in hypertension care, including patients, community health extension workers, nurses, pharmacists, researchers, administrators, policymakers, and physicians.ExposureSimulated intervention packages.Main outcomes and measuresRetention rate in hypertension care at 12, 24, and 36 months, modeled to estimate the effectiveness of the interventions.ResultsA total of 16 stakeholders participated in the workshops (mean [SD] age, 46.5 [8.6] years; 9 [56.3%] male). Training of health care workers was estimated to be the most effective single implementation strategy for improving retention in hypertension care in Nigeria, with estimated retention rates of 29.7% (95% CI, 27.8%-31.2%) at 12 months and 27.1% (95% CI, 26.0%-28.3%) at 24 months. Integrated intervention packages were associated with the greatest improvements in hypertension care retention overall, with modeled retention rates of 72.4% (95% CI, 68.4%-76.4%), 68.1% (95% CI, 64.5%-71.7%), and 67.1% (95% CI, 64.5%-71.1%) at 12, 24, and 36 months, respectively.Conclusions and relevanceThis decision analytical model study showed that community-based participatory research could be used to estimate the potential effectiveness of interventions for improving retention in hypertension care. Integrated intervention packages may be the most promising strategies.

Project description:National and international codes of research conduct have been established in most industrialized nations to ensure greater adherence to ethical research practices. Despite these safeguards, however, traditional research approaches often continue to stigmatize marginalized and vulnerable communities. Community-based participatory research (CBPR) has evolved as an effective new research paradigm that attempts to make research a more inclusive and democratic process by fostering the development of partnerships between communities and academics to address community-relevant research priorities. As such, it attempts to redress ethical concerns that have emerged out of more traditional paradigms. Nevertheless, new and emerging ethical dilemmas are commonly associated with CBPR and are rarely addressed in traditional ethical reviews. We conducted a content analysis of forms and guidelines commonly used by institutional review boards (IRBs) in the USA and research ethics boards (REBs) in Canada. Our intent was to see if the forms used by boards reflected common CBPR experience. We drew our sample from affiliated members of the US-based Association of Schools of Public Health and from Canadian universities that offered graduate public health training. This convenience sample (n = 30) was garnered from programs where application forms were available online for download between July and August, 2004. Results show that ethical review forms and guidelines overwhelmingly operate within a biomedical framework that rarely takes into account common CBPR experience. They are primarily focused on the principle of assessing risk to individuals and not to communities and continue to perpetuate the notion that the domain of "knowledge production" is the sole right of academic researchers. Consequently, IRBs and REBs may be unintentionally placing communities at risk by continuing to use procedures inappropriate or unsuitable for CBPR. IRB/REB procedures require a new framework more suitable for CBPR, and we propose alternative questions and procedures that may be utilized when assessing the ethical appropriateness of CBPR.

Project description:The importance of providing evidence-based palliative care for people with dementia is increasingly acknowledged as important for patient outcomes. In Ireland, evidence-based guidance has been developed in order to address key features of dementia palliative care, including the management of pain, medications and hydration and nutrition. The aim of this study was to identify and explore the factors affecting the implementation of evidence-based guidance on dementia palliative care. The Consolidated Framework for Implementation (CFIR) guided a mixed-method pre-post study. One guidance document pertaining to the management of pain, medication or hydration and nutrition was implemented in three long-term care facilities. Participatory action research in the form of work-based learning groups was used to implement the guidance, drawing on a situational analysis (pre-implementation). Staff questionnaires and audits were conducted pre- and post-implementation while champion interviews were also conducted post-implementation. Features of the guidance, the inner setting components such as readiness to change, and the process of implementation were most frequently identified as impacting implementation. Components of the outer setting, such as external policy incentives and individual characteristics, featured less commonly. Data from qualitative interviews revealed that the guidance was perceived as advantageous or complimentary to previous care provided. Within the inner setting, leadership and support from other colleagues facilitated implementation. However, limited availability of other healthcare professionals to assist with carrying out guidance actions presented a barrier in some facilities. The external facilitators of the work-based learning groups (WBLGs) were perceived as experienced and encouraged active participation and reflection on practices. Despite the challenge of releasing staff to attend the WBLGs, quantitative data demonstrated reduced staff de-motivation amongst those who did attend was noted post-implementation (pre-Mdn = 19.50 versus post-Mdn = 22.00, U = 497.00, p = 0.07). A situational analysis informed by the CFIR framework in conjunction with a participatory action research approach helped to advance the implementation of the guidance. The progress of implementation depended on the extent to which evidence-based care was previously being implemented at each site. Post-implementation analysis using CFIR identified challenges to address in future projects such as staff cover and timing of training to facilitate attendance for staff with different working hours. Facilitators included multidisciplinary engagement with the intervention and champions at each site to support the implementation process.

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Community-based participatory research in palliative care: a social justice imperative.

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Community-based participatory research in palliative care: a social justice imperative.

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