A palliative care approach has been advocated in caring for people with chronic illness such as Parkinson’s disease (PD) who can have similar difficulties to people with other advanced conditions (Hudson et al, 2006) in addition to unique PD-specific difficulties. Those involved need to recognise palliative care’s contribution in achieving quality of life in all chronic illnesses.
To identify palliative care needs and explore gaps in palliative care service provision for people with PD.
Within an exploratory research design, 54 people with PD, 41 carers and 111 health and social care professionals were interviewed about their experiences of PD and their perceptions of palliative care. Data were subjected to thematic content analysis.
The professional participants were very aware of negative associations of palliative care as end of life care amongst people with PD. Family members did not see the need for palliative health and social care, fearing upsetting or demoralising the patients. Professional participants saw these negative associations as a barrier in raising and delivering palliative care to patients and their families.
Strong negative associations around palliative care and hospices were found to impact on patient and family care. They discouraged patients and carers from seeking or accepting referrals to palliative care services, until the patients’ condition is very advanced. There is a hesitancy among professionals regarding when and how to introduce palliative care for people with life-limiting non-malignant disease and their families.
The negative perceptions around hospice and palliative care must be challenged.
|Conference||Marie Curie Cancer Care, Palliative Care Research Conference|
|Period||25/03/11 → …|
Support by a research award from Parkinson's UK
- Hospice and Palliative Care Nursing