Expanding the ethnographic toolkit: Using medical documents to include kinless older adults living with dementia in qualitative research.

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.

Kinless Older Adults With Dementia: Qualitative Analysis of Data From the Adult Changes in Thought Study.

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.

Does mailing unsolicited HPV self-sampling kits to women overdue for cervical cancer screening impact uptake of other preventive health services in a United States integrated delivery system?

Women overdue for cervical cancer screening often have other preventive care gaps. We examined whether mailing unsolicited human papillomavirus (HPV) self-sampling kits to increase cervical cancer screening impacted receipt of other preventive services women were due for: mammography, colorectal cancer (CRC) screening, influenza vaccination, depression screening, and diabetic HbA1c monitoring. From 2014 to 2016, 16,590 underscreened women were randomized to receive a mailed kit or usual care Pap reminders within Kaiser Permanente Washington. We used logistic regression to estimate odds ratios (ORs) of preventive services receipt within 12-months between the intervention vs. control arms, and within the intervention arm (comparing those returning a kit vs. attending Pap vs. nothing), adjusting models for demographic variables. There were no significant between-arm differences in uptake of any of the preventive services: intervention vs. control: mammography OR = 1.01 (95% confidence interval:0.88-1.17), CRC screening OR = 0.98 (0.86-1.13), influenza vaccination OR = 0.99 (0.92-1.06), depression screening OR = 1.07 (0.99-1.16), HbA1c OR = 0.84 (0.62-1.13). Within the intervention arm, preventive services uptake was higher in women who completed cervical cancer screening vs. did not, with stronger effects for women who attended Pap: Pap vs. nothing: mammography OR = 11.81 (8.11-17.19), CRC screening OR = 7.31 (5.57-9.58), influenza vaccination OR = 2.06 (1.82-2.32), depression screening OR = 1.79 (1.57-2.05), HbA1c OR = 3.35 (1.49-7.52); kit vs. nothing: mammography OR = 2.26 (1.56-3.26), CRC screening OR = 5.05 (3.57-7.14), influenza vaccination OR = 1.67 (1.41-1.98), depression screening OR = 1.09 (0.89-1.33), HbA1c OR = 1.23 (0.57-2.65). Mailing HPV self-sampling kits to underscreened women did not negatively impact uptake of other preventive services. However, overall preventive service uptake was the highest among women who attended in-clinic cervical cancer screening.