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 Patient experiences and perceptions of chronic disease care during the COVID-19 pandemic in India: a qualitative study

BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e048926
Author(s):  
Kavita Singh ◽  
Aprajita Kaushik ◽  
Leslie Johnson ◽  
Suganthi Jaganathan ◽  
Prashant Jarhyan ◽  
...  
Keyword(s):  
Chronic Disease ◽  
Qualitative Study ◽  
Coping Strategies ◽  
Lived Experiences ◽  
Chronic Conditions ◽  
Preventive Measures ◽  
Well Being ◽  
Reciprocal Effect ◽  
Chronic Disease Care ◽  
The Social

ObjectivePeople with chronic conditions are known to be vulnerable to the COVID-19 pandemic. This study aims to describe patients’ lived experiences, challenges faced by people with chronic conditions, their coping strategies, and the social and economic impacts of the COVID-19 pandemic.Design, setting and participantsWe conducted a qualitative study using a syndemic framework to understand the patients’ experiences of chronic disease care, challenges faced during the lockdown, their coping strategies and mitigators during the COVID-19 pandemic in the context of socioecological and biological factors. A diverse sample of 41 participants with chronic conditions (hypertension, diabetes, stroke and cardiovascular diseases) from four sites (Delhi, Haryana, Vizag and Chennai) in India participated in semistructured interviews. All interviews were audio recorded, transcribed, translated, anonymised and coded using MAXQDA software. We used the framework method to qualitatively analyse the COVID-19 pandemic impacts on health, social and economic well-being.ResultsParticipant experiences during the COVID-19 pandemic were categorised into four themes: challenges faced during the lockdown, experiences of the participants diagnosed with COVID-19, preventive measures taken and lessons learnt during the COVID-19 pandemic. A subgroup of participants faced difficulties in accessing healthcare while a few reported using teleconsultations. Most participants reported adverse economic impact of the pandemic which led to higher reporting of anxiety and stress. Participants who tested COVID-19 positive reported experiencing discrimination and stigma from neighbours. All participants reported taking essential preventive measures.ConclusionPeople with chronic conditions experienced a confluence (reciprocal effect) of COVID-19 pandemic and chronic diseases in the context of difficulty in accessing healthcare, sedentary lifestyle and increased stress and anxiety. Patients’ lived experiences during the pandemic provide important insights to inform effective transition to a mixed realm of online consultations and ‘distanced’ physical clinic visits.

scholarly journals Daily life participation in childhood chronic disease: a qualitative study on the child’s and parent’s perspective

2021 ◽  
Vol 5 (1) ◽  
pp. e001057
Author(s):  
Merel M Nap-van der Vlist ◽  
Emma E Berkelbach van der Sprenkel ◽  
Linde N Nijhof ◽  
Martha A Grootenhuis ◽  
Cornelis K van der Ent ◽  
...  
Keyword(s):  
Chronic Disease ◽  
Qualitative Study ◽  
Healthcare Professionals ◽  
Daily Life ◽  
Well Being ◽  
Parents And Children ◽  
Proactive Study ◽  
Parental Strategies ◽  
Depth Interviews ◽  
Level Of Agreement

ObjectiveTo understand how a child with a stable chronic disease and his/her parents shape his/her daily life participation, we assessed: (1) the parents’ goals regarding the child’s daily life participation, (2) parental strategies regarding the child’s participation and () how children and their parents interrelate when their goals regarding participation are not aligned.MethodsThis was a qualitative study design using a general inductive approach. Families of children 8–19 years with a stable chronic disease (cystic fibrosis, autoimmune disease or postcancer treatment) were recruited from the PROactive study. Simultaneous in-depth interviews were conducted separately with the child and parent(s). Analyses included constant comparison, coding and categorisation.ResultsThirty-one of the 57 invited families (54%) participated. We found that parents predominantly focus on securing their child’s well-being, using participation as a means to achieve well-being. Moreover, parents used different strategies to either support participation consistent with the child’s healthy peers or support participation with a focus on physical well-being. The degree of friction between parents and their child was based on the level of agreement on who takes the lead regarding the child’s participation.ConclusionsInterestingly, parents described participation as primarily a means to achieve the child’s well-being, whereas children described participation as more of a goal in itself. Understanding the child’s and parent’s perspective can help children, parents and healthcare professionals start a dialogue on participation and establish mutual goals. This may help parents and children find ways to interrelate while allowing the child to develop his/her autonomy.

scholarly journals Protective and Risk Factors of Italian Healthcare Professionals during the COVID-19 Pandemic Outbreak: A Qualitative Study

2021 ◽  
Vol 18 (2) ◽  
pp. 453
Author(s):  
Amalia De Leo ◽  
Eloisa Cianci ◽  
Paolo Mastore ◽  
Caterina Gozzoli
Keyword(s):  
Risk Factors ◽  
Qualitative Study ◽  
Extrinsic Motivation ◽  
Healthcare Professionals ◽  
Well Being ◽  
Organizational Level ◽  
Emotional Impact ◽  
Snowball Sampling ◽  
Structured Interviews ◽  
Interpersonal Level

The COVID-19 pandemic put the Italian health system under great stress. The sudden reorganization of work practices and the emotional impact of the large number of the victims had many consequences on the well-being of the healthcare professionals (HCPs) involved in managing the crisis. In the available literature, most studies have focused on the risk aspects while only few studies also take into account protective factors. For this reason, it was decided to conduct, within psycho-sociological perspective, a qualitative study with the aim to explore in depth the protective and risk factors as experienced by HCPs who worked in the Italian healthcare system during the COVID-19 outbreak. A total of 19 semi-structured interviews were conducted with HCPs–9 nurses and 10 physicians (7M and 12F) with an average age of 43 (SD = 13.4)–selected using snowball sampling. Considering three different levels of analysis the results highlight the protective and risk factors: personal history level (intrinsic/ethical motivation and flexible role versus extrinsic motivation and static role), interpersonal level (perception of supportive relationships with colleagues, patients, and family versus bad relationships), and organizational level (good leadership and sustainable work purpose versus absence of support from management and undefined or confused tasks).

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 Women’s views about physical activity as a treatment for vasomotor menopausal symptoms: a qualitative study

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Adèle Thomas ◽  
Amanda J. Daley
Keyword(s):  
Physical Activity ◽  
Qualitative Study ◽  
Healthcare Professionals ◽  
Well Being ◽  
Menopausal Symptoms ◽  
Hot Flushes ◽  
Physical Activity Interventions ◽  
Night Sweats ◽  
Randomised Controlled ◽  
Women’S Views

Abstract Background Women commonly seek medical advice about menopausal symptoms. Although menopausal hormone therapy is the most effective treatment, many women prefer non-pharmacological treatments, such as physical activity. The effectiveness of physical activity has been inconclusive when assessed by randomised controlled trials, and it remains unclear how women feel about it as a possible treatment approach. The aim of the study was to explore symptomatic menopausal women’s views and experiences of physical activity as a treatment for vasomotor and other menopausal symptoms. Methods An in-depth qualitative study was embedded within a randomised controlled trial that assessed the effectiveness of physical activity as a treatment for vasomotor menopausal symptoms in previously inactive vasomotor symptomatic women. Participants were randomised to one of two physical activity interventions or a usual care group. Both physical activity interventions involved two one-to-one consultations, plus either supporting materials or access to physical activity support groups, over 6 months. Semi-structured interviews were conducted with 17 purposively selected participants from all three trial groups after they had completed trial follow-up. Interviews were audio recorded, transcribed verbatim, and analysed by constant comparison. Results All participants talked positively about physical activity as a treatment for their menopausal symptoms, with most reporting participation had improved their hot flushes and night sweats. They reported that they had experienced improved sleep, physical health and psychological well-being. Those who received the physical activity plus social-support intervention reported their ability to cope with their menopausal symptoms had improved. Many participants commented that they would prefer doctors to discuss physical activity as a possible treatment for their hot flushes and night sweats, before offering medication. Conclusions Based on the views and experiences of the women who participated in this study, healthcare professionals should continue discussing physical activity as a potential first treatment option with menopausal women. Furthermore, healthcare professionals should ensure they prepare, support, and encourage these women both physically and emotionally. Trial registration ISRCTN ISRCTN06495625 Registered 10/11/2010

Circumstances Related to Moral Distress in Palliative Care: An Integrative Review

2020 ◽  
pp. 104990912097882
Author(s):  
Carla Corradi-Perini ◽  
Julianna Rodrigues Beltrão ◽  
Uiara Raiana Vargas de Castro Oliveira Ribeiro
Keyword(s):  
Palliative Care ◽  
Healthcare Professionals ◽  
Moral Distress ◽  
Well Being ◽  
Integrative Review ◽  
Death Process ◽  
Communication Problems ◽  
Ethical Conflicts ◽  
Relief Of Suffering ◽  
The Face

Background: The practice of palliative care is involved with ethical conflicts related to the life-death process and relief of suffering. The inability to act in the face of such dilemmas, due to internal or external barriers, can cause moral distress in the healthcare professionals. Objective: The purpose of this integrative review is to analyze which circumstances cause moral distress in healthcare professionals who work in palliative care. Methods: An integrative review of the literature was made in the SCIELO and PubMed databases, based on the descriptors “palliative care” and “moral distress.” Articles published between 2015-2020, in Portuguese, Spanish and English were included, following the PRISMA criteria. Results: From a selection of 97 documents, 56 were completed reviewed and 23 studies were included in the review. Most articles refer to the nursing area, followed by multidisciplinary studies. The circumstances related to moral distress were identified involving: personal aspects; patients and caregivers; team; environment and organization. Communication problems, lack of resources and witnessing professionals giving false hope to patient and family members were the events related to moral distress most mentioned by the articles in the review. Recommendations for reducing and preventing moral distress include empowerment and educational programs in bioethics and palliative care. Conclusions: Moral distress is an evident phenomenon in palliative care, involving different situations that can impact on quality-of-care provided as well as the well-being of the healthcare professionals.

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