This paper presents preliminary findings from a federally-funded mixed-method, CBPR study exploring the experiences, supportive care needs, and service use of diverse older adults living with serious illness (i.e. heart disease, diabetes, cancer, and other chronic diseases and conditions) in an urban, medically-underserved community in the U.S. The investigators aimed to identify barriers to accessing and using palliative support services among diverse older adults, in order to advance our understanding of health inequities affecting diverse elders.
Methods: The study emerged from a community council that has worked for five years to explore and address the unmet needs of seriously ill community-dwelling older residents of East and Central Harlem, NYC. Using purposive sampling, we conducted a series of semi-structured focused interviews with 45 chronically-ill older adults (aged 60+ years) recruited from ambulatory clinics at a public hospital in this diverse, low-income, urban, medically underserved community. Data from verbatim transcriptions were analyzed using Grounded Theory methods including simultaneous data collection and analysis, theoretical saturation, systematic coding and analysis by an interdisciplinary research team. Cross-case and intra-case analyses yielded overarching themes.
Findings: Over half the participants were Latino, approximately 1/3 were Black, and the remaining 20% were non-Hispanic white. Less than ½ were born in the U.S. Data analyses identified cultural, environmental, financial, and structural barriers confronting these elders and their families in accessing and utilizing palliative care and other formal health services. Despite high levels of burdensome symptoms (including pain, mobility problems, anxiety and depression) and functional limitations, most respondents reported they receive little formal care, and instead relied on family, friends, and faith for symptom management and support. Two common concerns were language and transportation barriers to accessing and using health services, as well as a lack of awareness about the goals and benefits of palliative care were common concerns. Many respondents ascribed access barriers to bias among healthcare providers that privileged white, wealthier, and younger patients over low-income older adults of color.
Conclusion/Implications: Preliminary findings from the present study are consistent with research on disparities in access to palliative care, and advance our understanding of specific barriers to formal care. Findings also highlighted the resilience of these older adults in managing their symptoms in the midst of multiple environmental and structural challenges. The investigators discuss implications for developing and evaluating culturally-sensitive palliative services for diverse, community-dwelling older adults. Finally, increased public health education and outreach about palliative care might be helpful in reducing burden and enhancing management of serious illnesses and their associated symptoms among under-served elders of color.