Adapting with life-altering disability: layers of adaptation and care within a lesbian community

Shelton, Margarette
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Three qualitative studies were designed to explore the question, “What constitutes successful adaptation in the wake of a life-altering illness or disability?” Studies targeted sociocultural and environmental dimensions of adaptation, particularly as these dimensions related to a vulnerable population, lesbians.

The first study, “Adaptation and the Altered Self,” examined the lived experiences of seven lesbians with life-altering medical conditions to assess the effect of their life experiences and sexual orientation on adaptation to their conditions. In “Holding Their Own,” four caregivers described how their care recipients' conditions affected them. Participants in the first study referred caregivers for interview. Both studies used phenomenological methods and processes of descriptive phenomenology, phenomenology of essences, and hermeneutic phenomenology (Streubert & Carpenter, 1999).

The third study, “HelpingHands,” described a volunteer, care-team organization's structure and function, using five focus groups. Board members, volunteers, and clients participated in the focus groups, and the transcripts of these groups were subjected to content analysis to identify the strongest themes. All three studies relied on member checks and peer debriefings to enhance credibility.

A strong linkage between the constructs of adaptation and identity emerged from the first study. Participants described the effects of their conditions on their sense of identity and strategies they employed to rebuild their identities and to adapt. In the second study, the caregivers' experiences were strongly shaped by earlier caregiving experiences. Further, the nature and degree of the care recipient's disability, the caregiver-care recipient relationship, the caregiver's awareness of and access to resources, and the meaning she ascribed to caregiving shaped each caregiver's experience. The third study demonstrated how HelpingHands was both an adaptive response and an adaptive resource for its community.

Considered individually, the studies do not indicate that distinctions exist between the experiences of these lesbians and their caregivers and those of people who are members of more mainstream populations. Some findings of these studies corroborate other studies in regard to prejudicial treatment. Community possibly serves as a cultural buffer, enabling those who are connected with its infrastructure to adapt to their conditions more successfully. Future research might explore community as a health-protective factor.

Adaptation, Caregivers, Disability, Lesbian