Background: Palliative care is recommended for non-malignant illnesses, including Parkinson’s disease. However, past research withhealthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Somehealthcare workers perceive a ‘fear’ in their patients about introducing palliative care. However, less is known about the views ofpeople with Parkinson’s disease and their carers about palliative care.Aim: (1) To explore the palliative care and related issues most affecting people with Parkinson’s disease and their families and (2) toexamine perceptions about/understanding of palliative care.Design: This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis.Setting/participants: A total of 31 people participated, both people with Parkinson’s disease (n = 19) and carers (n = 12), acrossthree Movement Disorder Clinics in the Republic of Ireland.Results: People with Parkinson’s disease and their carers were unfamiliar with the term palliative care. When informed of the roleof palliative care, most felt that they would benefit from this input. People with Parkinson’s disease and carers experienced a highillness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later,with advancing illness. Participants wanted more information about palliative care and especially further supports to address theirpsychosocial needs.Conclusion: A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced bypeople with Parkinson’s disease and their carers, and people with Parkinson’s disease and their carers are open to palliative care.Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson’s disease.
|Early online date||28 Sep 2016|
|Publication status||Published - 1 Jul 2017|
Bibliographical noteReference text: References
1. Dorsey ER, Constantinescu R, Thompson JP, et al. Projected
number of people with Parkinson disease in the most populous
nations, 2005 through 2030. Neurology 2007; 68: 384– 386.
2. Miyasaki JM, Long J, Mancini D, et al. Palliative care for
advanced Parkinson disease: an interdisciplinary clinic and
new scale, the ESAS-PD. Parkinsonism Relat Disord 2012;
18(Suppl. 3): S6–S9.
3. Hudson PL, Toye C and Kristjanson LJ. Would people with
Parkinson’s disease benefit from palliative care? Palliat
Med 2006; 20: 87–94.
4. Weafer JA. The palliative care needs of people with advancing
neurological disease in Ireland: a report prepared
for the Neurological Alliance of Ireland and the Irish
Hospice Foundation. Dublin, 2014, http://lenus.ie/hse/bitstream/
5. Boersma I, Miyasaki J, Kutner J, et al. Palliative care and neurology:
time for a paradigm shift. Neurology 2014; 83: 561–567.
6. NHS England (formerly the National End of Life Care
Programme). End of life in long term neurological conditions:
a framework for implementation, http://www.nai.ie/
7. Department of Health and Children. Report of the national
advisory committee on palliative care. Dublin, 2001,
8. Fox S, Gannon E, Cashell A, et al. Survey of health care
workers suggests unmet palliative care needs in Parkinson’s
disease. Mov Disord Clin Pract 2015; 2: 142–148.
9. Walker RW, Churm D, Dewhurst F, et al. Palliative care in
people with idiopathic Parkinson’s disease who die in hospital.
BMJ Support Palliat Care 2014; 4: 64–67.
10. Richfield EW, Jones EJ and Alty JE. Palliative care for
Parkinson’s disease: a summary of the evidence and future
directions. Palliat Med 2013; 27: 805–810.
11. McLaughlin D, Hasson F, Kernohan WG, et al. Living and
coping with Parkinson’s disease: perceptions of informal
carers. Palliat Med 2011; 25: 177–182.
12. Hasson F, Kernohan WG, McLaughlin M, et al. An exploration
into the palliative and end-of-life experiences of carers
of people with Parkinson’s disease. Palliat Med 2010; 24:
13. Giles S and Miyasaki J. Palliative stage Parkinson’s disease:
patient and family experiences of health-care services.
Palliat Med 2009; 23: 120–125.
14. Phillips LJ. Dropping the bomb: the experience of being
diagnosed with Parkinson’s disease. Geriatr Nurs 2006; 27:
15. Birgersson A-MB and Edberg A-K. Being in the light or
in the shade: persons with Parkinson’s disease and their
partners’ experience of support. Int J Nurs Stud 2004; 41: 621–630.
16. Hinnell C, Hurt CS, Landau S, et al. Nonmotor versus motor
symptoms: how much do they matter to health status in
Parkinson’s disease? Mov Disord 2012; 27: 236–241.
17. Fox S, Cashel A, Kernohan WG, et al. Interviews with Irish
healthcare workers from different disciplines about palliative
care for people with Parkinson’s disease: a definite
role but uncertainty around terminology and timing. BMC
Palliat Care 2016; 15: 15.
18. Waldron M, Kernohan WG, Hasson F, et al. Allied health
professional’s views on palliative care for people with
advanced Parkinson’s disease. Int J Ther Rehabil 2011; 18:
19. Goy ER, Carter JH and Ganzini L. Needs and experiences of
care-givers for family members dying with Parkinson disease.
J Palliat Care 2008; 24: 69–75.
20. INVOLVE. Briefing notes for researchers: involving the
public in NHS, public health and social care research.
Eastleigh, 2012, http://www.invo.org.uk/wp-content/
21. Tong A, Sainsbury P and Craig J. Consolidated criteria for
reporting qualitative research (COREQ): a 32-item checklist
for interviews and focus groups. Int J Qual Health Care
2007; 19: 349–357.
22. Tuck KK, Brod L, Nutt J, et al. Preferences of patients with
Parkinson’s disease for communication about advanced
care planning. Am J Hosp Palliat Care 2015; 32: 68–77.
- Parkinson disease
- palliative care
- qualitative research
- quality of life