scholarly journals Gender-specific problems and needs of family caregivers during specialist inpatient palliative care: a qualitative study on experiences of family caregivers and healthcare professionals

2021 ◽  
Vol 10 (8) ◽  
pp. 8571-8583 ◽  
Author(s):  
Anneke Ullrich ◽  
Sophia Eicken ◽  
Anja Coym ◽  
Cornelia Hlawatsch ◽  
Carsten Bokemeyer ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Healthcare Professionals ◽  
Gender Specific

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 ‘My wife is my doctor at home’: A qualitative study exploring the challenges of home-based palliative care in a resource-poor setting

2020 ◽  
pp. 026921632095110
Author(s):  
Yakubu Salifu ◽  
Kathryn Almack ◽  
Glenys Caswell
Keyword(s):  
Prostate Cancer ◽  
Palliative Care ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Advanced Prostate Cancer ◽  
Healthcare Professionals ◽  
Life Care ◽  
Home Based ◽  
Resource Poor ◽  
At Home

Background: Family caregiving is common globally, but when a family member needs palliative and end-of-life care, this requires knowledge and expertise in dealing with symptoms, medication, and treatment side effects. Caring for a family member with advanced prostate cancer in the home presents practical and emotional challenges, especially in resource-poor contexts, where there are increasing palliative cases without adequate palliative care institutions. Aim: The study explored palliative and end-of-life care experiences of family caregivers and patients living at home in a resource-poor context in Ghana. Design: This is a qualitative study using thematic analysis of face-to-face interviews at two-time points. Participants: Men living with advanced prostate cancer ( n = 23), family caregivers ( n = 23), healthcare professionals ( n = 12). Findings: Men with advanced prostate cancer face complex issues, including lack of access to professional care and a lack of resources for homecare. Family caregivers do not have easy access to professional support; they often have limited knowledge of disease progression. Patients have inadequate access to medication and other practical resources for homecare. Caregivers may be overburdened and perform the role of the patient’s ‘doctor’ at home-assessing patient’s symptoms, administering drugs, and providing hands-on care. Conclusion: Home-based care is promoted as an ideal and cost-effective model of care, particularly in Westernised palliative care models. However, in resource-poor contexts, there are significant challenges associated with the implementation of this model. This study revealed the scale of challenges family caregivers, who lack basic training on aspects of caring, face in providing home care unsupported by healthcare professionals.

scholarly journals The palliative care needs of patients with idiopathic pulmonary fibrosis: A qualitative study of patients and family caregivers

Heart & Lung ◽  
2017 ◽  
Vol 46 (1) ◽  
pp. 24-29 ◽  
Author(s):  
Kathleen Oare Lindell ◽  
Dio Kavalieratos ◽  
Kevin F. Gibson ◽  
Laura Tycon ◽  
Margaret Rosenzweig
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Family Caregivers ◽  
Care Needs ◽  
Palliative Care Needs

Patients’, family caregivers’, and professionals’ perspectives on quality of palliative care: A qualitative study

2014 ◽  
Vol 28 (9) ◽  
pp. 1128-1138 ◽  
Author(s):  
Isabelle Vedel ◽  
Véronique Ghadi ◽  
Liette Lapointe ◽  
Christelle Routelous ◽  
Philippe Aegerter ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Family Caregivers

scholarly journals Palliative Care With Dementia and Family Caregiver Involvement (A Collaborative Symposium between the Hospice, Palliative, and End-of-Life Care and Nursing Care of Older Adults Interest Groups)

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 786-786
Author(s):  
Jenny van der Steen ◽  
Christopher Johnson ◽  
Sheryl Zimmerman
Keyword(s):  
Palliative Care ◽  
Interest Groups ◽  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Abstract This collaborative symposium offered by the Hospice, Palliative, and End-of-Life Care and Nursing Care of Older Adults Interest Groups addresses palliative care including advance care planning considerations for family caregivers and persons with dementia. Family caregivers may need information about palliative and end-of-life care that is specific to the person, the situation or the stage of dementia. This symposium shows information needs also differ by country and setting. Conversations about symptoms, and about current and end-of-life treatment preferences need support from healthcare professionals. The symposium shows results of a study on video recordings with end-of-life preferences and how, as a stand-alone, they may not inform palliative care practice, and integration of information sources for advance care planning is needed. We will also show that a question prompt list with examples of questions to encourage family caregivers to ask healthcare professionals can and should have different contents for different countries as the content reflects socio-cultural differences. In more studies, participants clearly neede information on the disease trajectory and available services. Such needs go beyond need for information on pain and other symptoms, as family caregivers often appreciate opportunities for social activities for persons with dementia. A decision aid study shows that persons with dementia and family caregivers can participate in advance care planning conversations when supported by the right tools. We argue that local client participation is important when developing tools. Overall, the symposium highlights the need for tailored tools to support face-to-face conversations with all stakeholders to encourage person-centred caregiving.

scholarly journals A Qualitative Study on Nudging and Palliative Care: “An Attractive but Misleading Concept”

2021 ◽  
Vol 18 (18) ◽  
pp. 9575
Author(s):  
Ludovica De Panfilis ◽  
Carlo Peruselli ◽  
Giovanna Artioli ◽  
Marta Perin ◽  
Eduardo Bruera ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Care Setting ◽  
Healthcare Professionals ◽  
Ethical Decision Making ◽  
Limited Data ◽  
Textual Data ◽  
Neutral Space ◽  
Multidisciplinary Group ◽  
Excessive Risk

The debate about the ethical decision-making process in the healthcare context has been enriched with a theory called “nudging”, which has been defined as the framing of information that can significantly influence behaviour without restricting choice. The literature shows very limited data on the opinion and experience of palliative care healthcare professionals on the use of nudging techniques in their care setting. The aim of this study is to explore the beliefs of experienced palliative care professionals towards nudging. We performed a qualitative study using textual data collected through a focus group. It was audio-recorded, and the transcripts were subjected to a thematic analysis. It was performed within an oncological research hospital with a small and multidisciplinary group of healthcare professionals specialised in PC. Participants reported two overarching positions grounded in two main themes: (1) translating nudging in the PC setting and (2) towards a neutral space. The participants found few justifications for the use of nudging in the PC field, even if it can be very attractive and reassuring. Participants also expressed concerns about the excessive risk of developing pure paternalism.

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