Exploring caregiving experiences: caregiver coping and making sense of illness

¹Portions of this article were presented at the 2009 British Psychological Society, Health Psychology Conference, Aston University. This article presents findings from qualitative research and we present other findings from this research elsewhere.

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.

Keywords:

• ageing
• Alzheimer's disease
• dementia
• stroke
• caregiving

Acknowledgements

We thank recipients who enabled data to be collected while enduring very difficult and chronic illnesses, and caregivers for their participation and allowing us to use their photographs for copyright publication. We thank Boots Pharmacy for discounting 25% off for their disposable camera and photograph processing prices. We also thank retail stores, public vicinities and caregiving support groups that allowed advertisement of this research, and caregiver recruitment on their premises. This research was supported by funding by the ESRC.

Notes

¹ Portions of this article were presented at the 2009 British Psychological Society, Health Psychology Conference, Aston University. This article presents findings from qualitative research and we present other findings from this research elsewhere.