Experiences of mutuality in the spousal relationship in advanced Parkinson’s Disease from the perspective of the caregiving partner

Arshinoff, Rena and Grinyer, Anne and Preston, Nancy (2019) Experiences of mutuality in the spousal relationship in advanced Parkinson’s Disease from the perspective of the caregiving partner. PhD thesis, Lancaster University.

Text (2019arshinoffphd)
2019arshinoffphd.pdf - Published Version
Available under License Creative Commons Attribution-NoDerivs.
Download (3MB)

Abstract

Introduction: Parkinson’s Disease (PD) is a chronic and degenerative illness with a long trajectory involving multiple physical, cognitive, and emotional changes. In contrast to the holistic approach of palliative care, medical visits for PD patients tend to focus primarily on physical symptoms. Little attention may be paid to the psychosocial effects of PD, such as relational satisfaction and emotional and spiritual well-being of both patient and family. As illness advances, dependence on others occurs; in many if not most cases, the spouse is the primary caregiver. While research has been conducted to examine burden of care for PD spouses, the literature reveals little on mutuality, which concerns the quality of the relationship. Method: This study was conducted with spousal caregivers of PD patients with advanced illness at Hoehn & Yahr stages 4 and 5. Twelve caregiving spouses to partners with advanced PD participated in a single face-to-face semi-structured interview in this qualitative hermeneutic phenomenology study. van Manen’s approach to data analysis and writing for hermeneutic phenomenology was utilised, incorporating the four lifeworld existentials of spatiality, temporality, corporeality, and relationality. Results: Participants’ challenges to mutuality included limited enjoyable shared activities, living with a “stranger”, little fun, and resentment about PD. Loss of identity, ambiguous loss, and searching for meaning are challenges for caregiving spouses caring for an advanced PD partner; nevertheless most participants want to be with their spouse. Conclusion: Understanding how PD affects the marital relationship is crucial for health professionals to provide a palliative approach to both partners living with this unwelcome “intruder” in their lives.