High prevalence of physical and sexual aggression to caregivers in advanced Parkinson's disease. Experience in the Palliative Care Program

2016 ◽  
Vol 24 ◽  
pp. 141-142 ◽  
Author(s):  
Veronica Bruno ◽  
Deborah Mancini ◽  
Roger Ghoche ◽  
Rena Arshinoff ◽  
Janis M. Miyasaki
2014 ◽  
Vol 13 (5) ◽  
pp. 1363-1372 ◽  
Author(s):  
Carolyn Murdock ◽  
Wendy Cousins ◽  
W. George Kernohan

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.


2018 ◽  
Vol 8 (2) ◽  
pp. 180-183 ◽  
Author(s):  
Nathan J Badger ◽  
Dorothy Frizelle ◽  
Debi Adams ◽  
Miriam J Johnson

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.


2019 ◽  
Vol 18 (3) ◽  
pp. 332-338 ◽  
Author(s):  
Angela J. Pereira-Morales ◽  
Luis Enrique Valencia ◽  
Luis Rojas

AbstractObjectiveThe growing aging population and the high prevalence of several concomitant chronic diseases have contributed to the elevated rates of caregiver burden and suffering in patients. In turn, intending to relieve unnecessary pain in patients, there has been a rapid growth of outpatient palliative care programs. However, little has been studied about caregiver burden as a relevant factor potentially affecting the effectiveness of these programs. This study aimed to determine the extent of caregiver burden as a possible mediator on the effectiveness of a home-based palliative care program.MethodSixty-six palliative patients (56% women; mean age + SD = 71, 6 ± 17.7) and their caregivers were assessed with measures for physical, emotional, and psychological symptoms before and 1 month after the start of a home-based palliative care program.ResultsThe association between caregiver burden and palliative outcomes was corroborated with a categorical regression model (p < 0.01). Caregiver burden was found to be a significant mediator in the relationship between outcome measures for palliative care at baseline and after 1 month of enrollment in the program.Significance of resultsTo our knowledge, this is the first study to assess the role of caregiver burden in the effectiveness of a home-based palliative care program. Although further work is required, the results indicate that a patient-focused intervention does not have the same beneficial effect if the caregiver burden is not addressed. Future home-based palliative care programs should focus on caregivers as well as patients, with particular attention to psychosocial intervention on caregivers.


2011 ◽  
Vol 18 (1) ◽  
pp. 48-57 ◽  
Author(s):  
Mary Waldron ◽  
W George Kernohan ◽  
Felicity Hasson ◽  
Susan Foster ◽  
Barbara Cochrane ◽  
...  

2020 ◽  
Vol 10 (4) ◽  
pp. 1383-1388 ◽  
Author(s):  
Brianna Sennott ◽  
Katheryn Woo ◽  
Serena Hess ◽  
Daniela Mitchem ◽  
Ellen C. Klostermann ◽  
...  

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.


2015 ◽  
Vol 5 (4) ◽  
pp. 837-845 ◽  
Author(s):  
Paul A. Nausieda ◽  
Ann Hsu ◽  
Lawrence Elmer ◽  
Ramon A. Gil ◽  
Joerg Spiegel ◽  
...  

2020 ◽  
Vol 9 (S1) ◽  
pp. S80-S89
Author(s):  
Jori E. Fleisher ◽  
Ellen C. Klostermann ◽  
Serena P. Hess ◽  
Jeanette Lee ◽  
Erica Myrick ◽  
...  

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