Experiences of caring for a family member with Parkinson's disease: a meta-synthesis

ABSTRACT

Objective: The aim of this qualitative meta-synthesis was to search and then synthesise family caregivers’ experiences of providing care to individuals with Parkinson's disease (PD).

Method: A systematic search resulted in the identification of 11 qualitative studies. Noblit and Hare's seven-stage approach was used to provide a higher-order interpretation of how family caregivers’ experienced the effects of taking on a caregiving role.

Results: The process of reciprocal translation resulted in four overarching themes: (1) the need to carry on as usual – ‘the caregiver must continue with his life’; (2) the importance of support in facilitating coping – ‘I'm still going back to the support group’; (3) the difficult balancing act between caregiving and caregiver needs – ‘I cannot get sick because I'm a caregiver’; (4) conflicts in seeking information and knowledge – ‘maybe better not to know’.

Conclusion: The themes reflected different aspects of family caregivers’ lives that were affected as a result of caring for a relative diagnosed with PD and these raise challenges for more simplistic theories of family caring and appropriate support structures. The findings also highlight several recommendations for clinical practice.

KEYWORDS:

• Parkinson's disease
• caregiver
• caregiving
• family

Acknowledgments

The authors would like to acknowledge the editorial assistance of Sarah Heard.

Disclosure statement

No potential conflict of interest was reported by the authors.