Exploring caregiving experiences: caregiver coping and making sense of illness

Abstract

Objectives: The current research explores how family caregivers (1) make sense of caregiving and (2) cope with their circumstance.Method: We analysed semistructured interviews of 13 caregivers of people with either stroke (n = 5) or dementia (n = 8) and used photographs that caregivers took exemplifying their caregiving experiences to elicit their description of how they made sense of caregiving. This enabled greater insight into caregivers’ perspective of caregiving complementing our use of Interpretative Phenomenological Analysis (IPA) to analyse verbatim transcripts.Results: Emerging themes included (1) making sense of illness including the implications of receiving a diagnosis, caregiving motivations and receiving support, and (2) coping with caregiving, with variance in coping depending on, in part, individual differences in sense making. Caregivers adopted active and information seeking techniques to deal with current problems and to increase their sense of control, but avoidant techniques when considering future logistics of caregiving and when feeling helpless due to the burden they faced. At times caregivers looked on the bright side and made downward comparisons.Conclusion: The combination of elicitation techniques and analysis using IPA established patterns across caregivers and individual differences between caregivers in the meaning they assigned to their caregiving experience. Differences in sense making were based on the context of the caregiving stressor, which in turn influenced the variability in caregiver's coping techniques adopted. The analysis detailed within this article provides evidence that information and service provision must be tailored to individual caregiver experiences.