Palliative care for people with Parkinson's Disease and their carers

Background: Whilst management of Parkinson’s disease (PD) patients is primarily aimed at preserving life expectancy and limited motor disabilities (Behari et al 2005), a palliative care approach in management of such conditions has been advocated (DH, 2005). However, research suggests that palliative care services are often fragmented and inaccessible resulting in poor quality care for people with advanced PD. (Thompson & MacMahon 2004a). Aims: To explore experiences, palliative care needs and gaps in service provision from the perspective of the person with PD. Methods: Exploratory research design using a qualitative approach. Individual semi structured interviews with 54 participants. Data subjected to thematic content analysis. Results: The participants’ reported varied diagnostic experience. Most had little prior PD knowledge. Some felt there was limited subsequent signposting to services. PD placed a physical, psychological and social toll on participants due to loss of mobility and independence, with increasing dependency on informal carers highlighted. Whilst most appreciated their medical provision, their experience of medication relief and service delivery was mixed. Some also referred to a lack of information on financial and social support networks. Palliative care was generally perceived as related to cancer and terminal care. Participants coped with PD by adopting a positive outlook, despite some anxiety about PD’s rate of progression. They appreciated the information, advice and supportive role of the PD Society. Discussion: This study highlights the varied experience of people with PD suggesting some evidence of unmet palliative care need for people with PD and fragmented available services. There was also variation in the levels of clinical and social care support and information signposting among participants. Conclusions: Although this was a small scale exploratory investigation, involving one time-point, it lends support to the development of a proactive integrative palliative care services approach to address the needs of people with PD.