Abstract

A review of the literature highlights the important role informal carers play in the provision of palliative care in thecommunity. In order to explore the caring experience of relatives with Parkinson’s Disease (PD), interviews wereconducted with 26 informal family caregivers. Interviews were taped, transcribed and subjected to content analysis.All caregivers were spouses, the majority female (n¼17) and all were responsible for providing physical, social andemotional care in the home. Although they viewed care giving as their role and duty, the results highlight the widespreadburden of providing care on the emotional and physical health of the caregivers. The financial implications for providingcare were outlined, with many reporting difficulty in accessing benefits. From the point of diagnosis, which had a hugeemotional impact on relatives and carers, carers did not feel health professionals integrated them within the caringjourney. Since diagnosis, carers commented on the lack of continued and coordinated care plans for relatives, resulting insymptoms being mismanaged and care opportunities for relatives and carers missed. Stereotypes of the meaning andtiming of palliative care were common with many viewing it as being synonymous with cancer and not applicable to aperson with PD. As the well-being of the informal carer directly influences the care of the person with PD, supportinterventions are required to relieve their burden, maximize outcomes and ensure targeting of services.