scholarly journals “No One Can Tell Me How Parkinson’s Disease Will Unfold”: A Mixed Methods Case Study on Palliative Care for People with Parkinson’s Disease and Their Family Caregivers

2021 ◽  
pp. 1-13
Author(s):  
Herma Lennaerts-Kats ◽  
Anne Ebenau ◽  
Jenny T. van der Steen ◽  
Marten Munneke ◽  
Bastiaan R. Bloem ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Family Caregivers ◽  
Health Care Professionals ◽  
Disease Burden ◽  
Mixed Methods Case Study ◽  
Palliative Phase

Background: Palliative care for persons with Parkinson’s disease (PD) is developing. However, little is known about the experiences of patients with PD in the palliative phase and of their family caregivers. Objective: To explore needs of patients with PD in the palliative phase and of their family caregivers. Methods: A mixed methods case study design. Health care professionals included patients for whom the answer on the question “Would you be surprised if this patient died in the next 12 months?” was negative. At baseline, and after six and twelve months, we conducted semi-structured interviews with patients and caregivers. Participants completed questionnaires on quality of life, disease burden, caregiver burden, grief, and positive aspects of caregiving. We analyzed quantitative data using descriptive statistics, while we used thematic analysis for qualitative data. Results: Ten patients and eight family caregivers participated, of whom five patients died during the study period. While the quantitative data reflected a moderate disease burden, the qualitative findings indicated a higher disease burden. Longitudinal results showed small differences and changes in time. Patients reported a diverse range of symptoms, such as fatigue, immobility, cognitive changes, and hallucinations, which had a tremendous impact on their lives. Nevertheless, they rated their overall quality of life as moderate to positive. Family caregivers gradually learned to cope with difficult situations such delirium, fluctuations in functioning and hallucinations. They had great expertise in caring for the person with PD but did not automatically share this with health care professionals. Patients sensed a lack of time to discuss their complex needs with clinicians. Furthermore, palliative care was rarely discussed, and none of these patients had been referred to specialist palliative care services. Conclusion: Patients with PD experienced many difficulties in daily living. Patients seems to adapt to living with PD as they rated their quality of life as moderate to positive. Family caregivers became experts in the care for their loved one, but often learned on their own. An early implementation of the palliative care approach can be beneficial in addressing the needs of patients with PD and their family caregivers.

“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.

Patients with acquired immunodeficiency syndrome

2015 ◽  
pp. 628-649
Author(s):  
Carl A. Kirton ◽  
Deborah Witt Sherman
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
Health Care Professionals ◽  
Care Needs ◽  
Acquired Immunodeficiency ◽  
Aggressive Care ◽  
Immunodeficiency Syndrome ◽  
Palliative Care Needs

This chapter provides an overview and update of the comprehensive care related to HIV/AIDS and addresses the palliative care needs of individuals and families living with and dying from this illness. With this information, nurses and other health-care professionals will gain the knowledge to provide effective and compassionate care, recognizing the need for both curative and aggressive care as well as supportive and palliative therapies to maximize the quality of life of patients and their family caregivers.

oes Palliative Care Improve Quality of Life for People with Parkinson's Disease and Reduce Caregiver Burden?

2020 ◽  
Author(s):  
Benzi Kluger ◽  
Jean Kutner ◽  
Stefan Sillau ◽  
Diane Fairclough ◽  
Jacqueline Jones ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Caregiver Burden ◽  
Improve Quality

scholarly journals Being caregiver of people with Parkinson's Disease: experienced situations

2018 ◽  
Vol 71 (suppl 6) ◽  
pp. 2628-2634 ◽  
Author(s):  
Camila Padovani ◽  
Mislaine Casagrande de Lima Lopes ◽  
Ieda Harumi Higahashi ◽  
Sandra Marisa Pelloso ◽  
Marcelle Paiano ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Family Caregivers ◽  
Thematic Analysis ◽  
Family Care ◽  
Daily Routines ◽  
Efficient Care ◽  
Differentiated Care

ABSTRACT Objective: To understand the experience of caring for a person with Parkinson's Disease. Method: We used the qualitative study and thematic analysis with family caregivers of people with Parkinson's Disease. Results: Three thematic categories were identified, being: Feelings related to Parkinson's Disease; Changes in family daily routines; Caregiver strategies for self-care. Final considerations: Family care has shown the need for health services to provide caregivers support, as they experience situations of overload in care that can contribute to their illness. The findings also allow nurses to see the need for differentiated care for caregivers that, by assisting them with their needs, favor the quality of life of the caregiver, reduce the possibility of illness, allowing a more efficient care to the entity with chronic illness.

scholarly journals Measuring quality of life in palliative care for Parkinson's disease: A clinimetric comparison

2019 ◽  
Vol 65 ◽  
pp. 172-177 ◽  
Author(s):  
Samantha K. Holden ◽  
Claire E. Koljack ◽  
Lindsay P. Prizer ◽  
Stefan H. Sillau ◽  
Janis M. Miyasaki ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease

scholarly journals Advance Care Planning and Care Coordination for People With Parkinson's Disease and Their Family Caregivers—Study Protocol for a Multicentre, Randomized Controlled Trial

2021 ◽  
Vol 12 ◽  
Author(s):  
Marjan J. Meinders ◽  
Giovanni Gentile ◽  
Anette E. Schrag ◽  
Spiros Konitsiotis ◽  
Carsten Eggers ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Care Coordination ◽  
Controlled Trial ◽  
Symptom Burden ◽  
Advance Care ◽  
The Impact

Background: Parkinson's disease (PD) is a progressive neurodegenerative disease with motor- and non-motor symptoms. When the disease progresses, symptom burden increases. Consequently, additional care demands develop, the complexity of treatment increases, and the patient's quality of life is progressively threatened. To address these challenges, there is growing awareness of the potential benefits of palliative care for people with PD. This includes communication about end-of-life issues, such as Advance Care Planning (ACP), which helps to elicit patient's needs and preferences on issues related to future treatment and care. In this study, we will assess the impact and feasibility of a nurse-led palliative care intervention for people with PD across diverse European care settings.Methods: The intervention will be evaluated in a multicentre, open-label randomized controlled trial, with a parallel group design in seven European countries (Austria, Estonia, Germany, Greece, Italy, Sweden and United Kingdom). The “PD_Pal intervention” comprises (1) several consultations with a trained nurse who will perform ACP conversations and support care coordination and (2) use of a patient-directed “Parkinson Support Plan-workbook”. The primary endpoint is defined as the percentage of participants with documented ACP-decisions assessed at 6 months after baseline (t1). Secondary endpoints include patients' and family caregivers' quality of life, perceived care coordination, patients' symptom burden, and cost-effectiveness. In parallel, we will perform a process evaluation, to understand the feasibility of the intervention. Assessments are scheduled at baseline (t0), 6 months (t1), and 12 months (t2). Statistical analysis will be performed by means of Mantel–Haenszel methods and multilevel logistic regression models, correcting for multiple testing.Discussion: This study will contribute to the current knowledge gap on the application of palliative care interventions for people with Parkinson's disease aimed at ameliorating quality of life and managing end-of-life perspectives. Studying the impact and feasibility of the intervention in seven European countries, each with their own cultural and organisational characteristics, will allow us to create a broad perspective on palliative care interventions for people with Parkinson's disease across settings.Clinical Trial Registration:www.trialregister.nl, NL8180.

Critical issues of the biopsychosocial treatment of Parkinson’s disease

2015 ◽  
Vol 156 (12) ◽  
pp. 472-478 ◽  
Author(s):  
Péter Kincses ◽  
Norbert Kovács ◽  
Kázmér Karádi ◽  
János Kállai
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Psychological Health ◽  
Interdisciplinary Approach ◽  
Cognitive Status ◽  
Psychological Burden ◽  
Her Family ◽  
Critical Issues

This paper is a summary report on the basic questions of the biopsychosocial approach to Parkinson’s disease. It deals with cognitive, affective and psychological health issues which significantly influence the outcome of the physical rehabilitation. In spite of the unchanged cognitive status, the psychological burden of the changes in the quality of life, the obstruction, the change in the affective tone, and the shrinking ability to fulfil social roles decrease the patient’s quality of life. An interdisciplinary approach is best suited for mitigating these effects. Not only the patient but also his/her family and environment is seriously affected by the disease and its consequences. Treatment and rehabilitation options for increasing or maintaining the quality of life of the affected patients are diverse, and significantly depend on the features of the health care system. The authors believe that the following review emphasizing health psychological principles may contribute to the work of professionals working in clinical and rehabilitational fields and through them may increase the quality of life of patients and their family. Orv. Hetil., 2015, 156(12), 472–478.

scholarly journals The Parkinson’s Real-World Impact Assessment (PRISM) Study: A European Survey of the Burden of Parkinson’s Disease in Patients and their Carers

2021 ◽  
pp. 1-15
Author(s):  
Eduardo Tolosa ◽  
Georg Ebersbach ◽  
Joaquim J. Ferreira ◽  
Olivier Rascol ◽  
Angelo Antonini ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Impact Assessment ◽  
Real World ◽  
European Countries ◽  
Life Questionnaire ◽  
Motor Symptoms ◽  
Non Motor Symptoms

Background: A greater understanding of the everyday experiences of people with Parkinson’s disease (PD) and their carers may help improve clinical practice. Objective: The Parkinson’s Real-world Impact assesSMent (PRISM) study evaluated medication use, health-related quality of life (HRQoL) and the use of healthcare resources by people with PD and their carers. Methods: PRISM is an observational cross-sectional study, in which people with PD and their carers completed an online survey using structured questionnaires, including the Parkinson’s Disease Quality of Life Questionnaire (PDQ-39), Non-Motor Symptoms Questionnaire (NMSQuest) and Zarit Burden Interview (ZBI). Results: Data were collected from 861 people with PD (mean age, 65.0 years; mean disease duration, 7.7 years) and 256 carers from six European countries. People with PD reported a large number of different co-morbidities, non-motor symptoms (mean NMSQuest score, 12.8), and impaired HRQoL (median PDQ-39 summary score, 29.1). Forty-five percent of people with PD reported at least one impulse control behaviour. Treatment patterns varied considerably between different European countries. Levodopa was taken in the last 12 months by 85.9% of participants, and as monotherapy by 21.8% . Carers, who were mostly female (64.8%) and the partner/spouse of the person with PD (82.1%), reported mild to moderate burden (mean ZBI total score, 26.6). Conclusions: The PRISM study sheds light on the lives of people with PD and those who care for them, re-emphasising the many challenges they face in everyday life. The study also provides insights into the current treatment of PD in Europe.

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