An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease

Abstract

Although most people with Parkinson's disease are cared for in the community, little is known about family members' lived experiences of palliative or end-of-life care. The aim of this study was to explore former carers' lived experiences of palliative and end-of-life care. In total, 15 former family caregivers of patients who had died with Parkinson's disease were interviewed using a semi-structured topic list. Findings indicated that some palliative and end-of-life care needs had not been fully addressed. Lack of communication, knowledge and coordination of services resulted in many people caring for someone with Parkinson's disease not accessing specialist palliative care services. Participants also reflected upon the physical and psychological impact of caring in the advanced stage of Parkinson's. A multi-disciplinary team-based approach was advocated by participants. These findings provide important insights into the experience of caregiving to patients with Parkinson's disease in the home at the end-of-life stage. According to palliative care standards, patients and their carers are the unit of care; in reality, however, this standard is not being met.

The experiences of patients and carers in the daily management of care at the end of life

“…Carers undertake proactive information searching, and perceive themselves as acting as a go between for the various services involved in the care situation to compensate for a perceived lack of communication between these services (Hasson et al, 2010).…”

Palliative care in people with idiopathic Parkinson's disease who die in hospital

“…These symptoms can complicate decision making with regards to end-of-life care 1 2. There has been an increasing recognition that people with PD may benefit from specialist palliative care.…”

Information Needs of Family Caregivers of Persons With Cognitive Versus Physical Deficits

“…Caregivers' support needs can be viewed as a spectrum of needs, including practical, spiritual, psychosocial, informational, emotional, and physical support needs, as adapted from the supportive care needs framework model for caregivers of cancer patients (Fitch, 1994). A number of studies have shown that the need for information is a top priority among caregivers of persons with dementia (Muangpaisan et al, 2010;Wackerbarth & Johnson, 2002), stroke (Hare, Rogers, Lester, McManus, & Mant, 2006;Kim & Moon, 2007;MacIsaac, Harrison, & Godfrey, 2010;Mak, Mackenzie, & Lui, 2007;), spinal cord injury (SCI; Meade, Taylor, Kreutzer, Marwitz, & Thomas, 2004;Post, Bloemen, & de Witte, 2005), traumatic brain injury (TBI; Arango-Lasprilla et al, 2010;Blake, 2008, Rotundi, Sinkule, & Spring, 2005Sander, Clark, Atchison, & Rueda, 2009), Parkinson's disease (PD; Hasson et al, 2010;Kristjanson, Aoun, & Oldham, 2006;Thomas & Sweetnam, 2002), and multiple sclerosis (MS; Corry & While, 2009;Kersten et al, 2000;Koopman, Benbow, & Vandervoort, 2006;Kristjanson et al, 2006). In general, caregivers of persons with chronic disease have been shown to desire two types of information: general information about the medical condition of the care recipient and specific, understandable information tailored to their situation.…”