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 Living with Parkinson’s disease and connected to the duodopa pump: A qualitative study

2021 ◽  
Vol 4 (3) ◽  
Author(s):  
Yolanda María Chacón Gámez ◽  
Nikola Biller-Andorno
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Multimodal Approach ◽  
Structured Interviews ◽  
Advantages And Disadvantages

Parkinson’s Disease (PD) is a complex and heterogeneous disease that has a major impact on the lives of patients and their family caregivers. The duodopa pump is one of the treatments options for advanced PD. The experience of patients with this treatment is largely unexplored, however. This study is based on the experiences of patients with PD as well as their family caregivers using the pump. We take a multimodal approach that includes narrative semi-structured interviews and drawings. This methodology helps participants, particularly those with difficulty articulating themselves, express their experience with the disease and their perception of the treatment. We believe that the use of drawings complementing semi-structured interviews offers additional insights into the participants’ perception of PD and the pump. In this article we focus on the following topics: the participants’ perception of PD and the pump, the reasons for choosing the pump over alternatives, and the advantages and disadvantages of this treatment for patients and family caregivers. Our findings show that the participants consider PD as a complex and unpredictable disease that changed their lives and affect everyone differently, while the pump makes the disease less changeable and more manageable.

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 I’m Losing the ‘Me’: Partners’ Experiences of Engagement with Parkinson's Health Professionals

2015 ◽  
Vol 16 (2) ◽  
pp. 116-130 ◽  
Author(s):  
Meredith Bolland ◽  
Andrew Guilfoyle ◽  
Romola S. Bucks
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Health Professionals ◽  
Interpretative Phenomenological Analysis ◽  
Process Model ◽  
Phenomenological Analysis ◽  
Primary Data ◽  
Structured Interviews ◽  
Effective Care ◽  
Emerging Themes

Background: Partners of people with Parkinson's disease (PD) have first-hand knowledge relevant to the management of the person with Parkinson's (PwP). If captured, this knowledge may improve effective care for the PwP. However, there is a lack of research focusing primarily on partners’ experiences of engagement with health professionals working in PD (HPPs).Methods: Interpretative Phenomenological Analysis (IPA) was used to investigate the meaning of partners’ experiences of engagement with HPPs. Semi-structured interviews with 15 partners of PwP provided primary data. Each interview was digitally recorded, transcribed verbatim and analysed for emerging themes.Results: Three themes emerged: (i) partners’ lack of entitlement for their own needs to be met; (ii) submersion of self in the partnership and (iii) health professionals as agents of support. Additionally, sub-themes were identified, such as barriers to feeling entitled, setting up a premise for entitlement, and lost identity. Together, these themes highlight the current lack of focus on the partners of PwP. A process model was developed to describe partners’ cyclic progression through the various stages of their experience, and in the process, identifying initiatives for intervention.Conclusion: Given a lack of focus on the needs of partners of PwP, these preliminary insights could inform the delivery of improved services that support partners. This will ultimately benefit the PwP.

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.

scholarly journals RADPAC-PD: A tool to support healthcare professionals in timely identifying palliative care needs of people with Parkinson’s disease

PLoS ONE ◽  
2020 ◽  
Vol 15 (4) ◽  
pp. e0230611 ◽  
Author(s):  
Herma Lennaerts-Kats ◽  
Jenny T. van der Steen ◽  
Zefanja Vijftigschild ◽  
Maxime Steppe ◽  
Marjan J. Meinders ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Healthcare Professionals ◽  
Care Needs ◽  
Palliative Care Needs

scholarly journals Parkinson’s Disease and Deep Brain Stimulation Have an Impact on My Life: A Multimodal Study on the Experiences of Patients and Family Caregivers

2021 ◽  
Vol 18 (18) ◽  
pp. 9516
Author(s):  
Yolanda María Chacón Gámez ◽  
Florian Brugger ◽  
Nikola Biller-Andorno
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Deep Brain Stimulation ◽  
Side Effects ◽  
Family Caregivers ◽  
Brain Stimulation ◽  
Physical And Mental Health ◽  
Structured Interviews ◽  
The Impact ◽  
Deep Brain

Parkinson’s disease (PD) has a large impact on patients’ physical and mental health, which also greatly affects their family caregivers. Deep brain stimulation (DBS) has emerged as an effective treatment for PD, but different authors have expressed their concerns about the potential impact of DBS on personality and identity. Our study aims at better understanding how patients and family caregivers experience life with PD and DBS, the impact of both on their personal and social lives, and their perception of the changes that have occurred as a result of the disease and the treatment. Our study applies a multimodal approach by means of narrative semi-structured interviews and drawings. Seven principal themes have been identified: “everyone’s Parkinson’s is different”, “changing as a person during the disease”, “going through Parkinson’s together”, “DBS improved my life”, “I am treated with DBS but I have Parkinson’s still”, “DBS is not perfect”, and “being different after DBS”. PD is perceived as an unpredictable and heterogeneous disease that changes from person to person, as does the effect of DBS. While DBS side-effects may have an impact on patients’ personality, behavior, and self-perception, PD symptoms and drug side-effects also have a great impact on these aspects.

scholarly journals Palliative care for Parkinson’s disease: Patient and carer’s perspectives explored through qualitative interview

2016 ◽  
Vol 31 (7) ◽  
pp. 634-641 ◽  
Author(s):  
Siobhan Fox ◽  
Alison Cashell ◽  
W George Kernohan ◽  
Marie Lynch ◽  
Ciara McGlade ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Healthcare Workers ◽  
Disease Patient ◽  
Past Research ◽  
Routine Care ◽  
Specialist Palliative Care ◽  
Psychosocial Needs ◽  
Structured Interviews

Background: Palliative care is recommended for non-malignant illnesses, including Parkinson’s disease. However, past research with healthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Some healthcare workers perceive a ‘fear’ in their patients about introducing palliative care. However, less is known about the views of people 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) to examine 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), across three 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 role of palliative care, most felt that they would benefit from this input. People with Parkinson’s disease and carers experienced a high illness 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 their psychosocial needs. Conclusion: A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced by people 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.

scholarly journals Palliative care for persons with Parkinson’s disease: a qualitative study on the experiences of health care professionals

2019 ◽  
Vol 18 (1) ◽  
Author(s):  
Herma Lennaerts ◽  
Maxime Steppe ◽  
Marten Munneke ◽  
Marjan J. Meinders ◽  
Jenny T. van der Steen ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Health Care ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Qualitative Study ◽  
Health Care Professionals
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