scholarly journals A qualitative study of female caregiving spouses’ experiences of intimate relationships as cognition declines in Parkinson’s disease

2018 ◽  
Vol 47 (4) ◽  
pp. 604-610 ◽  
Author(s):  
Sabina Vatter ◽  
Kathryn R McDonald ◽  
Emma Stanmore ◽  
Linda Clare ◽  
Sheree A McCormick ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Qualitative Study ◽  
Intimate Relationships ◽  
Caregiving Spouses

Community aquatic therapy for Parkinson’s disease: an international qualitative study

2021 ◽  
pp. 1-10
Author(s):  
Louise M. Carroll ◽  
Meg. E. Morris ◽  
William T. O'Connor ◽  
Amanda M. Clifford
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Qualitative Study ◽  
Aquatic Therapy

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 Being in control of Parkinson’s disease: A qualitative study of community-dwelling patients’ coping with changes in care

2018 ◽  
Vol 24 (1) ◽  
pp. 138-145 ◽  
Author(s):  
Annette O. A. Plouvier ◽  
Tim C. Olde Hartman ◽  
Anne van Litsenburg ◽  
Bastiaan R. Bloem ◽  
Chris van Weel ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Qualitative Study ◽  
Community Dwelling

scholarly journals A Qualitative Study on the Impact of First Steps—A Peer-led Educational Intervention for People Newly Diagnosed with Parkinson’s Disease

2019 ◽  
Vol 9 (10) ◽  
pp. 107 ◽  
Author(s):  
Andrew Soundy ◽  
Johnny Collett ◽  
Sophie Lawrie ◽  
Shelly Coe ◽  
Helen Roberts ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Qualitative Study ◽  
Active Control ◽  
Educational Intervention ◽  
Intervention Group ◽  
Control Group ◽  
Newly Diagnosed ◽  
Active Control Group ◽  
The Impact

Aim: The dual aim of this research was to consider the impact of providing the First Steps program on the stories of people with Parkinson’s Disease (PD) and to investigate the psychosocial and emotional mechanisms which may explain this impact. Methods: A qualitative study using a subtle realist paradigm and hermeneutic phenomenological methodology was undertaken. A single semi-structured interview was used to consider the impact and experiences of people with PD who completed either the intervention (2-day peer-led behavior intervention using storytelling 6–8 weeks apart) or received telephone support calls as part of the active control group. Descriptive statistics and a narrative analysis were undertaken on the results. Results: Forty-two participants were invited to participate, forty of whom completed the interview. This included 18 from the intervention group and 22 from the active control group. The intervention group identified the value of the program as worth-while, demonstrating improved exercise behavior and coping mechanisms following the intervention. Three major stories (the affirmed, the validated and the transformed story) identified the impact of the intervention. Three internal mechanisms (perceived control, hope and action, and the individual’s mind set) alongside three social mechanisms (social comparison, social control and the first opportunity to share with peers) appeared to explain this impact. Conclusion: This study provides exciting and novel evidence of the impact of a peer-led psycho-educational intervention for people newly diagnosed with PD. Further research is needed to consider the impact of stories-based approaches on participants and consider a critical evaluation of the mechanisms which may explain changes in stories and self-reported behaviour.

scholarly journals Good-quality social care for people with Parkinson’s disease: a qualitative study

BMJ Open ◽  
2016 ◽  
Vol 6 (2) ◽  
pp. e006813 ◽  
Author(s):  
Angela Mary Tod ◽  
Fiona Kennedy ◽  
Amanda-Jayne Stocks ◽  
Ann McDonnell ◽  
Bhanu Ramaswamy ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Qualitative Study ◽  
Social Care

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.

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