Experiences of caregivers of people with Parkinson's disease in Singapore: a qualitative analysis

Abstract

Aims and objectives: To conduct an in-depth qualitative examination of the experiences of Singaporean people caring for those with Parkinson's disease (PD).

Background: The need to provide care for people with PD will increase with the extended life expectancy of Singaporeans. Caring for people with PD in their own homes for as long as possible is argued to provide psychosocial benefits as well as benefiting the community by delayed institutionalisation and reduced healthcare costs.

Design: This study reports the qualitative exploratory component of a large mixed method sequential explanatory design.

Methods: Caregivers were selected through a purposive sampling technique and stratified based on the Hoehn and Yahr disease staging. Twenty-one semi-structured interviews were conducted in the home setting. Interviews were audio-taped and transcribed verbatim. The qualitative data were analysed using Ritchie and Spencer's framework method of qualitative analysis (1994, Analyzing Qualitative Data, Routledge, London).

Results: Seventeen (81%) caregivers were women, and their ages ranged from 31 years to more than 71 years. The length of the interview ranged from 42-106 minutes. The interview transcriptions produced 1731 free nodes, and after careful scrutiny for redundancy, 11 sub-themes were identified, which were organised into four key themes. These themes pertained to: (1) Coping and adaptation, (2) Challenges of caregiving, (3) Effects of caregiving on the caregivers and the (4) Need for better caregiver support.

Conclusion: The results of this study have provided insights into the coping and well-being of caregivers of people with PD. The progressive nature of PD placed a significant burden on caregivers' emotional well-being. The findings of this study underscore the need for formal caregiver support and education to reduce strain in caregivers targeted at every stage of PD as there is no clear pattern of disease progression.

Relevance to clinical practice: This study has provided important findings that will inform the construction of interventional strategies to reduce caregiver burden and the provision of better support services for caregivers.