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Impact of specialist palliative care on coping with Parkinson’s disease: patients and carers
  1. Nathan J Badger1,
  2. Dorothy Frizelle1,
  3. Debi Adams2 and
  4. Miriam J Johnson2,3
  1. 1Department of Psychological Health and Wellbeing, University of Hull, Hull, UK
  2. 2Saint Catherine’s Hospice, Scarborough, UK
  3. 3Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK
  1. Correspondence to Dr Miriam J Johnson, Hull York Medical School, University of Hull, Hull, HU6 7RX, UK; miriam.johnson{at}hyms.ac.uk

Abstract

Objectives UK guidelines recommend palliative care access for people with Parkinson’s disease; however, this remains sporadic, and it is unknown whether specialist palliative care helps patients and carers cope with this distressing condition. This study aimed to explore whether, and how, access to specialist palliative care services affected patients’ and carers’ coping with Parkinson’s disease.

Methods Semistructured interviews were conducted, audio-recorded and verbatim transcribed. Data were analysed using interpretative phenomenological analysis. Participants were patients with advanced idiopathic Parkinson’s disease (n=3), and carers of people with Parkinson’s disease (n=5, however, one diagnosis was reviewed) receiving care from an integrated specialist palliative care and Parkinson’s disease service in North East England.

Results Access to specialist palliative care helped participants cope with some aspects of advanced Parkinson’s disease. Three superordinate themes were developed:‘ managing uncertainty’, ‘impacts on the self’ and ‘specialist palliative care maintaining a positive outlook’.

Conclusions Specialist palliative care helped patients and carers cope with advanced Parkinson’s disease. Specialist palliative care is a complex intervention that acknowledges the complex and holistic nature of Parkinson’s disease, enabling health in some domains despite continued presence of pathology. These exploratory findings support the utility of this approach for people living with Parkinson’s disease.

  • parkinson’s disease
  • palliative care
  • coping

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Footnotes

  • Contributors This work was part of NJB’s DClinPsy thesis. NJB conceived the question, designed and conducted the study, analysed the data and drafted the first report supervised by MJJ and DF with advice from DA on service and population issues. NJB, MJJ and DF contributed to interpretation of data. All authors (and Sarah Callin as noted in acknowledgements) contributed to the drafting of this manuscript. All authors approved the final manuscript.

  • Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

  • Competing interests D.A. is a paid employee of the recruitment site providing direct clinical support to the population from which participants were recruited. The remaining authors declare that there is no conflict of interest.

  • Ethics approval Ethical approval was obtained from NRES Committee East Midlands-Derby (REC Reference 13/EM/0120), including for the method of consent, in addition to institutional permission from the recruitment site. Explicit consent to publish anonymised findings was received from all participants.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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