Community Capacity in End of Life Care: Can a Community Development Model Address Suffering and Enhance Well-Being?

2016 ◽  
pp. 275-289 ◽  
Author(s):  
Kyle Y. Whitfield ◽  
Martin LaBrie
Keyword(s):  
Community Development ◽  
End Of Life ◽  
End Of Life Care ◽  
Well Being ◽  
Community Capacity ◽  
Development Model ◽  
Life Care

scholarly journals END-OF-LIFE CARE PREFERENCES AND WELL-BEING IN LONG-TERM CARE RESIDENTS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S669-S669
Author(s):  
Kelly Shryock ◽  
Jacinta Dickens ◽  
Anisha Thomas ◽  
Suzanne Meeks
Keyword(s):  
Quality Of Life ◽  
Positive Affect ◽  
End Of Life ◽  
End Of Life Care ◽  
Long Term Care ◽  
Well Being ◽  
Life Care ◽  
Term Care

Abstract Research on end-of-life care in nursing homes comes largely from the viewpoint of staff or family members. We examined patient perspectives on end-of-life care, preferences for care, and quality of life in long-term care settings. We hypothesized that fulfillment of the Self Determination Theory (SDT) needs of autonomy, competence, and relatedness would be related to better well-being and that the degree to which end-of-life care preferences are seen as possible in the setting would be related to SDT need fulfillment and well-being. Preliminary data, collected from older individuals at the end of life (over 55, presence of significant chronic disease, in long term care setting) (n= 72), demonstrated that autonomy, competence, and relatedness measures were moderately and significantly correlated with well-being as measured by life satisfaction, higher positive affect, lower negative affect, and overall quality of life measures The degree to which residents believed that their end-of-life care preferences could be honored in the setting was also significantly correlated with autonomy, competence, relatedness, positive affect, and psychological quality of life. These results are consistent with SDT and suggest that if long term care settings can promote autonomy, connection, and competence in making end of life decisions, possibly by discovering and fulfilling preferences for end of life care, individuals who end their lives on those settings have potential for greater satisfaction and happiness. These results suggest that SDT is a useful framework for ongoing research on how to improve the end of life experiences of older adults in long term care.

Enabling first and second year doctors to negotiate ethical challenges in end-of-life care: a qualitative study

2021 ◽  
pp. bmjspcare-2020-002672
Author(s):  
Sinead Donnelly ◽  
Simon Walker
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Moral Distress ◽  
Well Being ◽  
First Year ◽  
Life Care ◽  
Ethical Challenges ◽  
Life And Death ◽  
Medicine Physician ◽  
Second Year

ObjectiveTo understand the unique ethical and professional challenges confronting first and second year doctors in caring for people who are dying, and to learn what factors help or hinder them in managing these.Method6 first year and 7 second year doctors were interviewed one-to-one by a senior palliative medicine physician (SD), quarterly over 12 months, using a semistructured approach. Thematic analysis was conducted with the findings, following the general inductive approach.Results21 hours of recorded interviews were analysed by SD, and ethical and professional issues were identified. These were discussed with SW, and sorted into seven broad categories. The participants’ accounts of the issues convey a strong ethical sensitivity, developed through their undergraduate training. A recurring challenge for them through their first 12–24 months of work as doctors is being responsible for the decisions, knowing that what they do can have life and death consequences. The participants frequently describe senior doctors as an important source of support, and the lack of such support as leading to moral distress and demoralisation. Another important factor is having opportunity to discuss and reflect on the decisions after they are made. Where such reflection had been facilitated properly, participants displayed considerable growth in their ability to manage ethical challenges.ConclusionSenior support and opportunities for reflection need to be recognised as key factors in enabling first and second year to respond appropriately to ethical challenges in end-of-life care, and in sustaining their well-being through this critical stage of their professional life.

scholarly journals Considerations and recommendations for conducting qualitative research interviews with palliative and end-of-life care patients in the home setting: a consensus paper

2015 ◽  
Vol 9 (1) ◽  
pp. e14-e14 ◽  
Author(s):  
Stephanie Sivell ◽  
Hayley Prout ◽  
Noreen Hopewell-Kelly ◽  
Jessica Baillie ◽  
Anthony Byrne ◽  
...  
Keyword(s):  
Qualitative Research ◽  
End Of Life ◽  
Home Environment ◽  
End Of Life Care ◽  
Terminally Ill ◽  
Well Being ◽  
Research Centre ◽  
Life Care ◽  
Home Setting ◽  
Terminally Ill Patients

ObjectivesTo present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care.MethodsEight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment.ResultsThe main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers’ training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life.ConclusionsThe ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis.

Comfort while Dying: a Transnational History of Pediatric End of Life Care

2018 ◽  
Author(s):  
Emilie Hill-Smith
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Hospice Care ◽  
Well Being ◽  
Life Care ◽  
The Public ◽  
Depth Analysis ◽  
Personal Experiences ◽  
History Of ◽  
Being There

Through an in-depth analysis of current and historical literature, this thesis explores the question: what is hospice and end of life care for children? I will dissect the various dimensions of children’s hospice care and how it has evolved over time. Also in my thesis, I will draw from my personal experiences in volunteering at a children’s hospice to discuss the support and care that volunteers receive. Through this literature review I hope to bring to light to a subject that is often overlooked or too difficult for people to discuss. I will propose plans to better the care for children and families who are facing the end of life. My thesis will summarize the current literature available about the type of care that children receive worldwide and how this care affects families and children’s well-being. There has been minimal research done on children in end of life due to the topic’s sensitive nature. My goals is to inform the public of an under discussed but important topic in paediatric medicine.

scholarly journals The contributions of family care-givers at end of life: A national post-bereavement census survey of cancer carers’ hours of care and expenditures

2017 ◽  
Vol 31 (4) ◽  
pp. 346-355 ◽  
Author(s):  
Christine Rowland ◽  
Barbara Hanratty ◽  
Mark Pilling ◽  
Bernard van den Berg ◽  
Gunn Grande
Keyword(s):  
End Of Life ◽  
Informal Care ◽  
End Of Life Care ◽  
Family Care ◽  
Well Being ◽  
Background Information ◽  
Life Care ◽  
Data Set ◽  
Care Givers ◽  
Care Giving

Background: Family members provide vital care at end of life, enabling patients to remain at home. Such informal care contributes significantly to the economy while supporting patients’ preferences and government policy. However, the value of care-givers’ contributions is often underestimated or overlooked in evaluations. Without information on the activities and expenditures involved in informal care-giving, it is impossible to provide an accurate assessment of carers’ contribution to end-of-life care. Aim: The aim of this study was to investigate the contributions and expenditure of informal, family care-giving in end-of-life cancer care. Design: A national census survey of English cancer carers was conducted. Survey packs were mailed to 5271 people who registered the death of a relative to cancer during 1–16 May 2015. Data were collected on decedents’ health and situation, care support given, financial expenditure resulting from care, carer well-being and general background information. Results: In all, 1504 completed surveys were returned (28.5%). Over 90% of respondents reported spending time on care-giving in the last 3 months of the decedent’s life, contributing a median 69 h 30 min of care-giving each week. Those who reported details of expenditure (72.5%) spent a median £370 in the last 3 months of the decedent’s life. Conclusion: Carers contribute a great deal of time and money for day-to-day support and care of patients. This study has yielded a unique, population-level data set of end-of-life care-giving and future analyses will provide estimates of the economic value of family care-givers’ contributions.

Church leaders and parishioners speak out about the role of the church in advance care planning and end-of-life care

2020 ◽  
pp. 1-7 ◽  
Author(s):  
Danetta Hendricks Sloan ◽  
Tamryn F. Gray ◽  
Darriel Harris ◽  
Theodora Peters ◽  
Anne Belcher ◽  
...  
Keyword(s):  
African American ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Well Being ◽  
Care Planning ◽  
Life Care ◽  
Advance Care ◽  
The Church

Abstract Objective Despite the increased focus on improving advance care planning (ACP) in African Americans through community partnerships, little published research focused on the role of the African American church in this effort. This study examines parishioner perceptions and beliefs about the role of the church in ACP and end-of-life care (EOLC). Method Qualitative interviews were completed with 25 church members (parishioners n = 15, church leader n = 10). The coding of data entailed a direct content analysis approach incorporating team experts for final themes. Results Seven themes emerged: (1) church role on end-of-life, (2) advocacy for health and well-being, (3) health literacy in EOLC, (4) lay health training on ACP and EOLC, (5) church recognized as a trusted source, (6) use of church ministries to sustain programs related to ACP and EOLC, and (7) community resources for EOLC needs. Significance of results The church has a central role in the African American Community. These findings suggest that involving African American churches in ACP and EOLC training can have a positive effect on facilitating planning and care during illness, dying, and death for their congregants.

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