Impact of specialist palliative care on coping with Parkinson’s disease: patients and carers

2018 ◽  
Vol 8 (2) ◽  
pp. 180-183 ◽  
Author(s):  
Nathan J Badger ◽  
Dorothy Frizelle ◽  
Debi Adams ◽  
Miriam J Johnson
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Interpretative Phenomenological Analysis ◽  
Specialist Palliative Care ◽  
Advanced Parkinson’S Disease ◽  
Care Access ◽  
North East ◽  
Palliative Care Services ◽  
Positive Outlook

ObjectivesUK 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.MethodsSemistructured 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.ResultsAccess 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’.ConclusionsSpecialist 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.

scholarly journals “How Long Can I Carry On?” The Need for Palliative Care in Parkinson’s Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers

2020 ◽  
Vol 10 (4) ◽  
pp. 1631-1642
Author(s):  
Herma Lennaerts-Kats ◽  
Anne Ebenau ◽  
Maxime Steppe ◽  
Jenny T. van der Steen ◽  
Marjan J. Meinders ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Interpretative Phenomenological Analysis ◽  
Healthcare Professionals ◽  
Structured Interviews ◽  
Practice Nurses ◽  
Bereaved Family

Background: Family caregivers provide the majority of care for people with Parkinson’s disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one’s care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients’ preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals’ awareness of family and bereaved caregivers’ needs may mitigate these long-term detrimental effects.

scholarly journals Allied health professional's views on palliative care for people with advanced Parkinson's disease

2011 ◽  
Vol 18 (1) ◽  
pp. 48-57 ◽  
Author(s):  
Mary Waldron ◽  
W George Kernohan ◽  
Felicity Hasson ◽  
Susan Foster ◽  
Barbara Cochrane ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Allied Health ◽  
Advanced Parkinson’S Disease

“Running Water Won't Freeze”: How people with advanced Parkinson's disease experience occupation

2014 ◽  
Vol 13 (5) ◽  
pp. 1363-1372 ◽  
Author(s):  
Carolyn Murdock ◽  
Wendy Cousins ◽  
W. George Kernohan
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Occupational Therapy ◽  
Research Network ◽  
Daily Lives ◽  
Advanced Parkinson’S Disease ◽  
Disease Experience

AbstractObjective:Parkinson's disease (PD) is a progressive neurodegenerative condition often resulting in significant disability and impacting on one's ability to participate in an occupation. The present study aimed to explore how people with advanced Parkinson's disease experience the phenomenon of occupation in their daily lives in order to inform the practice of occupational therapy in palliative care.Method:Using a phenomenological approach, in-depth interviews were undertaken with a purposive sample of 10 people in the advanced stages of Parkinson's disease. These interviews were audiotaped, transcribed verbatim, and subsequently analyzed using a thematic content analysis approach. The study received approval from the relevant university ethics committee, as well as the research network of Parkinson's UK.Results:The experience of occupation emerged as being physical, psychological, social, and spiritual with related subthemes. Within each of these themes, participants described their experience of occupation that they valued and that were important to their daily lives. They also identified the strategies they employed to continue participating in certain occupations and described others they were no longer able to engage in and the impact of that loss.Significance of Results:Participants' experiences crossed the domains of palliative care and suggest that adopting a palliative care approach would enhance an enhanced quality of life, experienced in terms of meaningful and valuable occupation. Disruption to participation in occupation caused them distress and frustration, suggesting that access to occupation-focused therapy would significantly improve quality of life for people with PD. As there is a strong link between the ethos of occupational therapy and palliative care, it is proposed that there is a valuable role for occupational therapy intervention to play within palliative care.

scholarly journals Novel Outreach Program and Practical Strategies for Patients with Parkinsonism in the COVID-19 Pandemic

2020 ◽  
Vol 10 (4) ◽  
pp. 1383-1388 ◽  
Author(s):  
Brianna Sennott ◽  
Katheryn Woo ◽  
Serena Hess ◽  
Daniela Mitchem ◽  
Ellen C. Klostermann ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Social Isolation ◽  
Daily Life ◽  
Routine Care ◽  
Support Networks ◽  
Outreach Program ◽  
Risk Of Infection ◽  
Advanced Parkinson’S Disease

The coronavirus disease 2019 (COVID-19) pandemic has upended daily life and neurologic care for most patients, including those with Parkinson’s disease and parkinsonism. Disruptions to routine care, high volumes of patient and caregiver calls, and our patients’ risk of infection and complications inspired a proactive COVID-19 outreach program. This program targets patients with advanced Parkinson’s disease and related disorders, specifically those who are homebound, receiving or eligible for palliative care, and/or lacking support networks. We describe the program and practical strategies providers can implement to support wellbeing and successful telehealth uptake during this time of social isolation and gradual reopening.

scholarly journals Interdisciplinary palliative care for people with advanced Parkinson’s disease: a view from the home

2020 ◽  
Vol 9 (S1) ◽  
pp. S80-S89
Author(s):  
Jori E. Fleisher ◽  
Ellen C. Klostermann ◽  
Serena P. Hess ◽  
Jeanette Lee ◽  
Erica Myrick ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Advanced Parkinson’S Disease
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