Concern over the need for effective and accessible healthcare for individuals with advanced chronic illness has drawn attention to the significant gaps in our knowledge of palliative medicine. To advance our understanding of this field, community-based participatory research (CBPR) is proposed as a tool for future research initiatives. This paper offers a rationale for how CBPR may be employed to address specific gaps in palliative care research. Several examples where this approach has been used previously are described, and potential obstacles to implementing this research method are delineated. Despite challenges to incorporating CBPR to palliative care research, this approach holds substantial potential to advance our current understanding of the field and promote sensitivity for future programs, practices and policies.
Although they experience high rates of chronic illness, low-income minority communities have traditionally underutilized palliative care services compared to whites and those with higher incomes. One reason for this trend is lack of screening by community providers. We utilized a community-based participatory research approach to develop and implement an innovative multidomain palliative care screening tool in aging service agencies. Participants were aging service providers and clients in the East and Central Harlem neighborhoods of New York City, which are characterized by high poverty, largely African American and Latino populations, disproportionally high rates of chronic conditions, and limited health-care access. Screening tool development included reviewing existing measures and obtaining feedback from an expert panel, aging service providers, and older adults. We developed a 22-item tool covering 3 domains of palliative care need (physical symptoms, emotional concerns, and goals of care), which can be administered in 10 to 15 minutes. Sixteen providers at 2 aging service agencies were trained to use the tool over a 3-month pilot period. The tool showed evidence of feasibility of implementation, with 44 older adult clients screened. Providers reported high acceptability, 36% of clients screened positive, and the majority accepted referrals to outpatient palliative care clinics. The screening tool has the potential to increase palliative care utilization among underserved community-dwelling older adults and may improve their quality of life, potentially in communities worldwide. Future work should examine the psychometric proprieties of the tool, examine predictors of positive screens, explore its impact on clinical outcomes, and expand its reach.
The rapid growth of mobile health (mHealth) devices holds substantial potential for improving care and care outcomes in all patient populations, including older adults with pain. However, existing research reflects a substantial gap in knowledge about how to design, evaluate, and disseminate devices to optimally address the many challenges associated with managing pain in older persons. Given these knowledge gaps, we sought to develop a set of practice-based research priorities to facilitate innovation in this field. We employed the Cornell Research-Practice Consensus Workshop Model, an evidence-based approach to generating research priorities. Sixty participants attended the conference, where stakeholder groups included older adults with pain and their caregivers, behavioral and social scientists, healthcare providers, pain experts, and specialists in mHealth and health policy. Participants generated 13 recommendations classified into 2 categories: 1) implications for designing research on mHealth among older adults (eg, conduct research on ways to enhance accessibility of mHealth tools among diverse groups of older adults with pain, expand research on mHealth sensing applications), and 2) implementation of mHealth technology into practice and associated regulatory issues (eg, promote research on ways to initiate/sustain patient behavior change, expand research on mHealth cybersecurity and privacy issues). PERSPECTIVE: This report highlights a set of research priorities in the area of mHealth and later-life pain derived from the joint perspectives of researchers and key stakeholder groups. Addressing these priorities could help to improve the quality of care delivered to older adults with pain.
Although palliative care (PC) has become increasingly familiar, considerable gaps persist in access to and use of services. Community-based programs remain rare, and low-income, minority communities significantly under-utilize hospice and palliative services. We used community-based participatory research (CBPR) methods to conduct a mixed-methods community needs assessment of seriously-ill older adults (n=100) and providers from community-based programs and churches (n=41) in an urban medicallyunderserved community in the U.S. to explore: (I) the prevalence and severity of illness-related symptoms and psychosocial-spiritual concerns; (II) the scope and quality of community supports helping older adults manage their symptoms; and (III) the perceptions and utilization of palliative and supportive care services among older adults and community-based service providers. Participants reported high rates of chronic illness-related symptoms (i.e., pain, fatigue, sleeping difficulties, depression, and anxiety), and many described unmet needs around symptom management. Few had ever utilized PC or pain management services, and most relied primarily on family, friends, and faith communities to help them manage burdensome symptoms.Barriers included lack of familiarity with PC, limited access and financial concerns. Older adults were largely unfamiliar with PC, and many described unmet needs and desire for help with symptom burden. Findings support the need to further explore community-level and cultural barriers to PC among diverse, underserved older adults. Development of innovative community partnerships may help raise awareness of PC and address the physical and psychosocial-spiritual challenges facing chronically-ill minority older adults and their families.
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