The impact of non-motor manifestations of Parkinson's disease on partners: understanding and application of chronic sorrow theory

Abstract

INTRODUCTION: Parkinson's disease (PD) can cause many emotions, including grief and a sense of isolation for both the person with PD (referred to as Parkinsonian) and their partner. Such ongoing grief and emotional turmoil can be termed chronic sorrow. The aim of this research is to present accounts of partners' perspectives, analysed in the context of chronic sorrow theory, to offer health professionals an insight into the impact of non-motor PD symptoms on partners. METHODS: A group of partners of Parkinsonians provided the data through individual stories. These stories were subjected to thematic analysis, using a seven-step process leading to the establishment of themes. FINDINGS: Caregiver burden and chronic sorrow is not related to providing physical care, but the emotional care of attempting to minimise the effect of PD, coping with disturbance to sleep, and helping the Parkinsonian to maintain as much independence as possible. Contributors to this article found chronic sorrow theory provided a framework for understanding their emotions. Sharing their experiences with others provided an opportunity to be heard, and enabled them to make sense of individual situations. CONCLUSION: Chronic sorrow theory provides a useful framework for both partners of Parkinsonians in understanding their emotional responses, and for health professionals in considering the challenges partners face in coping with living with a person with PD. KEYWORDS: Grief; Parkinson's disease; support group; support partners; symptoms