scholarly journals ‘I don’t think I’d be frightened if the statins went’: a phenomenological qualitative study exploring medicines use in palliative care patients, carers and healthcare professionals.

2016 ◽  
Vol 15 (1) ◽  
Author(s):  
Adam Todd ◽  
Holly Holmes ◽  
Sallie Pearson ◽  
Carmel Hughes ◽  
Inga Andrew ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Healthcare Professionals ◽  
Medicines Use

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 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.

scholarly journals A qualitative study of bereaved family caregivers: feeling of security, facilitators and barriers for rural home care and death for persons with advanced cancer

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Anne Sæle Barlund ◽  
Beate André ◽  
Kari Sand ◽  
Anne-Tove Brenne
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Rural Areas ◽  
Healthcare Professionals ◽  
Healthcare Services ◽  
Personal Factors ◽  
At Home

Abstract Background For cancer patients and their family, an important factor that determines the choice to die at home is the caregivers’ feeling of security when caring for the patient at home. Support to caregivers from healthcare professionals is important for the feeling of security. In rural areas, long distances and variable infrastructure may influence on access to healthcare services. This study explored factors that determined the security of caregivers of patients with advanced cancer who cared for the patients at home at the end of life in the rural region of Sogn og Fjordane in Norway, and what factors that facilitated home death. Methods A qualitative study using semi-structured in-depth interviews with bereaved with experience from caring for cancer patients at home at the end of life was performed. Meaning units were extracted from the transcribed interviews and divided into categories and subcategories using Kvale and Brinkmann’s qualitative method for analysis. Results Ten bereaved caregivers from nine families where recruited. Five had lived together with the deceased. Three main categories of factors contributing to security emerged from the analysis: “Personal factors”, “Healthcare professionals” and “Organization” of healthcare. Healthcare professionals and the organization of healthcare services contributed most to the feeling of security. Conclusion Good competence in palliative care among healthcare professionals caring for patients with advanced cancer at home and well- organized palliative care services with defined responsibilities provided security to caregivers caring for advanced cancer patients at home in Sogn og Fjordane.

scholarly journals Dutch Healthcare Professionals Experiences of Assisted Dying: A Constructivist Qualitative Study Conducted in a Chronic Disease Care Centre and Hospice.

2019 ◽  
Author(s):  
Deborah Lewis ◽  
Nancy Preston
Keyword(s):  
Palliative Care ◽  
Chronic Disease ◽  
Qualitative Study ◽  
Healthcare Professionals ◽  
Recovery Period ◽  
Well Being ◽  
Psychological Support ◽  
Assisted Dying ◽  
Care Centre ◽  
Chronic Disease Care

Abstract Background: Assisted dying is a contemporary issue, but comprehensive consideration of healthcare professionals’ experiences has been lacking. This study sought to gain a deeper understanding of professionals’ experiences of assisted dying to inform the global debate surrounding its implementation. Methods: This constructivist, qualitative study, recruited twenty-one physicians, nurses and therapists from a Dutch chronic disease care centre and a hospice. Data were gathered in semi-structured interviews, conducted in English. Questioning focused on professionals’ experiences along a clinical trajectory from an initial request to beyond the death. Data were subjected to thematic analysis to identify main and subthemes. Results: Analytical procedures generated four broad themes ‘Assessment and its Challenges’, ‘Preparing Staff and Learners’, ‘Assisting a Death’ and ‘Bereavement Care and Beyond’, supported by subthemes. Assessment of requests involved all professional groups and required open dialogue, exploration of fears, palliative care optimisation and psychological evaluation. Such measures resolved the majority of requests. Assisted deaths were challenging, required careful management and were not perceived as normal. Administration of lethal drugs and reporting procedures were stressful for physicians. Structured debriefing and proactive psychological support were valued by all professionals, but resolving their emotions took time. Some physicians required a recovery period creating equity of access issues. Life and care experience aided the preparation of professionals, but resilience was also needed. Support for the provision of assisted dying was overwhelming, but this was unqualified in only a third of participants. Conclusions: Assisted dying creates significant challenges for healthcare professionals who require preparation and support. This is likely to require enhanced levels of palliative care education, legislative advice, and proactive psychological support to ensure professionals’ own well-being. Meeting these needs will have financial implications which should be addressed prior to implementing legislation which permits assisted dying.

scholarly journals An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study. An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study.

2019 ◽  
Author(s):  
Eleanor Wilson ◽  
Glenys Caswell ◽  
Asam Latif ◽  
Claire Anderson ◽  
Christina Faull ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Patient Choice ◽  
Medicines Management ◽  
Dose Administration ◽  
Controlled Drugs ◽  
Qualitative Interview Study ◽  
At Home

Abstract Background: The management of medicines towards the end of life can place increasing burdens and responsibilities on patients and families. This has received little attention yet it can be a source of great difficulty and distress patients and families. Dose administration aids can be useful for some patients but there is no evidence for their wide spread use or the implications for their use as patients become increasing unwell. Aim: To explore how healthcare professionals describe the support they provide for patients to manage medications at home at end of life. Methods: Qualitative interview study with thematic analysis. Participants were a purposive sample of 40 community healthcare professionals (including GPs, pharmacists, and specialist palliative care and community nurses) from across two English counties. Results: Healthcare professionals reported a variety of ways in which they tried to support patients to take medications as prescribed. While the paper presents some solutions and strategies reported by professional respondents it was clear from both professional and patient/family caregiver accounts in the wider study that rather few professionals provided this kind of support. Standard solutions offered included: rationalising the number of medications; providing different formulations; explaining what medications were for and how best to take them. Dose administration aids were also regularly provided, and while useful for some, they posed a number of practical difficulties for palliative care. More challenging circumstances such as substance misuse and memory loss required more innovative strategies such as supporting ways to record medication taking; balancing restricted access to controlled drugs and appropriate pain management and supporting patient choice in medication use. Conclusions: The burdens and responsibilities of managing medicines at home for patients approaching the end of life has not been widely recognised or understood. This paper considers some of the strategies reported by professionals in the study, and points to the great potential for a more widely proactive stance in supporting patients and family carers to understand and take their medicines effectively. By adopting tailored, and sometimes, ‘outside the box’ thinking professionals can identify immediate, simple solutions to the problems patients and families experience with managing medicines.

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