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A qualitative exploration of how gender and relationship shape family caregivers' experiences across the Alzheimer's disease trajectory.

ABSTRACT: Caregiving experiences are not static. They change across the disease trajectory and care continuum. However, it is not clear how caregiver gender or relationship type is related to evolving caregiver experiences over time. This qualitative study informed by constructivist grounded theory and framework analysis explored the experiences over time of men and women who were adult children and spousal caregivers to persons with Alzheimer's disease. Forty spousal (10 husbands and 10 wives) and adult children (10 sons and 10 daughters) caregivers to persons with Alzheimer's disease were interviewed using a semi-structured interview guide. Our findings suggest the experiences of caregiving, examined through a gender and relationship type lens, are complex and variable. The caregiving experience was not related to gender or relationship type alone, but often to a combination of the two. For instance, spousal caregivers did not immediately accept the diagnosis, with wives being more optimistic than husbands about a slow progression of the disease. Adult children caregivers were concerned about the ways the caregiving role would impact their personal and career obligations and sought ways to mitigate the changes to their daily lives. Sons and husband caregivers largely utilized home and community health services to assist with personal care tasks, whereas daughters and wives utilized the same services to allow them to complete other caregiving tasks (e.g., housekeeping). Recognition of the complex inter-relationships among gender and relationship type on caregiving experiences supports the need for family-centered interventions. This article also extends sex and gender research as it highlights that an in-depth understanding of the caregiving experience cannot be understood by gender alone and relationship type must also be considered.

SUBMITTER: Kokorelias KM

PROVIDER: S-EPMC8678646 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundThe onset of Alzheimer disease and related dementias (AD/ADRD) can alter relationships between family caregivers and persons living with AD/ADRD, such as through the occurrence of distressful behavioral and psychological symptoms of dementia. Poorly perceived relationship quality by caregivers contributes to negative outcomes for both care partners, such as low-quality caregiving and potential mistreatment of older adults. Knowledge and Interpersonal Skills to Develop Exemplary Relationships (KINDER) is a new, web-based, asynchronous psychoeducational intervention with content informed by focus groups with family caregivers. The program was developed to prevent low-quality caregiving and potential mistreatment of older adults by focusing on building healthy caregiving relationships.ObjectiveThe purpose of this study is to describe caregivers' experiences participating in KINDER to understand intervention acceptability. Of particular interest was learning how comfortable caregivers were viewing content addressing potential mistreatment, as well as whether asynchronous delivery created any barriers to participating in the intervention. Findings will inform future program refinements before efficacy testing.MethodsAlthough 23 caregivers enrolled in the KINDER parent study, only 7 of them completed the 8-week intervention. In-depth, semistructured qualitative interviews were conducted with all participants who completed the program to understand their experiences while attending KINDER and to decipher barriers to participation. We also asked participants about which program elements were most valuable and which were least valuable to them, as well as how the program could be improved. Interview transcripts were analyzed by 2 coders using thematic analysis.ResultsOur findings indicate that caregivers were overall satisfied with KINDER's focus and content. Participants particularly liked how KINDER materials felt authentic and relevant to supporting healthy care relationships (Theme 1). The program's multiple components were found to be valuable, especially story-based video vignettes and readings (Theme 2). Most caregivers were comfortable viewing depictions of mistreatment and understood the importance of this content (Theme 3). Notably, while caregivers appreciated the convenience of participating in an asynchronous web-based intervention, several expressed a desire for more opportunities to speak with other caregivers (Theme 4). Technology challenges, such as a lack of clarity about automated intervention activities, deterred completion.ConclusionsFindings from this study suggest an asynchronous web-based intervention covering sensitive topics such as mistreatment is acceptable for at least some AD/ADRD caregivers. Caregivers' comments that materials felt authentic may suggest that the integration of caregiver voices before intervention development enhanced the relevance of content. To make KINDER easier to deliver and participate in, the investigators plan to reduce the use of automation and integrate more group-based programming, as recommended by participants. Further, given the higher-than-expected dropout rate, in future studies, the investigators will collect data to determine the reasons for participants not completing study activities.

Project description:ObjectiveTo explore medical student perceptions and experiences of gender bias within medical education.SettingGender bias-'prejudiced actions or thoughts based on the perception that women are not equal to men'-is a widespread issue. Within medicine, the pay gap, under-representation of women in senior roles and sexual harassment are among the most concerning issues demonstrating its presence and impact. While research investigating experiences of clinicians is gaining traction, investigation of medical students' experiences is lacking. This qualitative study analyses medical students' experiences of gender bias within their education to discern any patterns to this bias. Illuminating the current state of medical education gender bias will hopefully highlight areas in which student experience could be improved. Constructivist thematic analysis was used to analyse data, informed by William's patterns of gender bias, intersectional feminism and communities of practice theory.ParticipantsThirty-two medical students from multiple UK medical schools participated in individual interviews. Nine faculty members were also interviewed to triangulate data.ResultsGender bias has an overt presence during medical student education, manifesting in line with William's patterns of bias, impacting career aspirations. Physical environments serve to manifest organisational values, sending implicit messages regarding who is most welcome-currently, this imagery remains 'too male, too pale…too stale'. Existing gender initiatives require careful scrutiny, as this work identifies the superficial application of positive action, and a failure to affect meaningful change.ConclusionsDespite progress having been made regarding overt gender discrimination, implicit bias persists, with existing positive action inadequate in promoting the advancement of women. Institutions should mandate participation in implicit bias education programmes for all staff and must strive to revise the imagery within physical environments to better represent society. Gender initiatives, like Athena Scientific Women's Academic Network, also require large-scale evaluation regarding their impact, which this work found to be lacking.

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A qualitative exploration of how gender and relationship shape family caregivers' experiences across the Alzheimer's disease trajectory.

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