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The COVID-19 pandemic caused near immediate service delivery adaptation among social service and healthcare sectors. Findings from in-depth interviews with 45 senior leaders of social services and healthcare organizations serving older adults in Washington State elucidate the role of trust in service provision at the onset of the pandemic. First, a history of trust facilitated service adaptation. Intentional outreach, programs, and culturally responsive services sustained trust with service recipients. Providing services and information in an older adult's preferred language built trust. Community networks facilitated and reflected trust between organizations and older adults. Finally, mistrust was prevalent for clients who perceived a high risk of experiencing negative consequences from accessing services. Our findings support the need for culturally and linguistically diverse services. To improve trust, the aging network should strengthen and expand partnerships with community-based organizations who have established trust through history, intentionality, and relevance to their service populations..
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COVID-19 , Pandemias , Humanos , Idoso , Acessibilidade aos Serviços de Saúde , Confiança , COVID-19/epidemiologia , Redes ComunitáriasRESUMO
The COVID-19 pandemic threatened the ability of nutrition providers to address food insufficiency among older adults. Findings from Household Pulse Survey data and interviews with 23 service leaders in Washington state during the summer of 2020 point to key organizational practices that should inform future emergency food assistance planning. Organizations deeply connected to and trusted by racially and ethnically diverse, unhoused, and low-income older adults are critical to addressing disparities in food insufficiency. Stable and flexible increases in funding would allow these organizations to maintain the effective and culturally-relevant service adaptations they implemented in the first months of the pandemic.
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Ethnographic research with cognitively impaired older adults can be challenging, in part because cognitive impairment raises questions about the ability to provide informed consent. Relying on proxy consent is a commonly used strategy, but often excludes people with dementia who lack close kin (de Medeiros, Girling, & Berlinger, 2022). In this paper, we describe how we have analyzed existing research data from a well-established and ongoing prospective cohort study, the Adult Changes in Thought Study, along with unstructured text from the medical records of participants who had no living spouse or adult children when they developed dementia, as a way of studying the circumstances, life trajectories, caregiving resources, and care needs of this vulnerable and difficult-to-research group. In this article, we detail this methodology, exploring what can and cannot be gleaned from it, what the ethical implications may be, and how and whether this type of research can be considered ethnographic. In conclusion, we argue that collaborative interdisciplinary research using existing, longitudinal research data and text from medical records deserves to be considered as a potentially useful addition to the ethnographic toolkit. We anticipate that this is a methodology that could be applied more broadly, and paired with more traditional ethnographic methods, might be one way to make research with this population more inclusive.
Assuntos
Antropologia Cultural , Demência , Humanos , Idoso , Estudos Prospectivos , Pesquisa Qualitativa , Antropologia Cultural/métodos , Cônjuges , Demência/psicologiaRESUMO
OBJECTIVES: To examine the circumstances and needs of older adults who were "kinless," defined as having no living spouse or children, when they developed dementia. METHODS: We conducted a secondary analysis of information from the Adult Changes in Thought study. Among 848 participants diagnosed with dementia between 1994 and 2016, we identified 64 who had no living spouse or child at dementia onset. We then conducted a qualitative analysis of administrative documents pertaining to these participants: handwritten comments recorded after each study visit, and medical history documents containing clinical chart notes from participants' medical records. RESULTS: In this community-dwelling cohort of older adults diagnosed with dementia, 8.4% were kinless at dementia onset. Participants in this sample had an average age of 87 years old, half lived alone, and one third lived with unrelated persons. Through inductive content analysis, we identified 4 themes that describe their circumstances and needs: (1) life trajectories, (2) caregiving resources, (3) care needs and gaps, and (4) turning points in caregiving arrangements. DISCUSSION: Our qualitative analysis reveals that the life trajectories that led members of the analytic cohort to be kinless at dementia onset were quite varied. This research highlights the importance of nonfamily caregivers and participants' own roles as caregivers. Our findings suggest that clinicians and health systems may need to work with other parties to directly provide dementia caregiving support rather than rely on family, and address factors such as neighborhood affordability that particularly affect older adults who have limited family support.