scholarly journals ‘Living in parallel worlds’ – bereaved parents’ experience of family life when a parent with dependent children is at end of life from cancer: A qualitative study

2021 ◽  
pp. 026921632110017
Author(s):  
Cherith J Semple ◽  
Eilís McCaughan ◽  
Esther R Beck ◽  
Jeffrey R Hanna
Keyword(s):  
End Of Life ◽  
Psychosocial Adjustment ◽  
Family Life ◽  
Life Experience ◽  
Qualitative Interviews ◽  
Later Life ◽  
Support Service ◽  
Dependent Children ◽  
Bereaved Parents ◽  
Death Of A Parent

Background: When a parent of dependent children (<18 years old) is at end of life from cancer, this has a profound impact on the family. Children less prepared for the death of a parent are more susceptive to poorer psychosocial adjustment in later life. There is a lack of understanding from the literature surrounding what support parents require, and how they navigate this end of life experience. Aim: To explore bereaved parents’ experience and needs for families when a parent is at end of life from cancer with dependent children. Design: In-depth, semi-structured qualitative interviews were conducted with 21 bereaved mothers and fathers, identified from the general public, a family support service and hospice. Data were analysed thematically. Results: Parents often live in ‘parallel worlds’ throughout the end of life period. In one world, ‘living in the moment’, cherishing the ordinariness of family life, remaining hopeful treatment will prolong life, whilst adapting as the illness unfolds. The other world presents as ‘intermitted glimpses that death is approaching’, shadowed with painful emotional concerns surrounding their children and the future. At the end, death rapidly approaches, characterised as suddenly ‘falling off the cliff’; placing significant demands on the well-parent. Conclusions: Amidst challenges, clinicians should provide parents with clear information surrounding a poor prognosis, so families can plan and prepare for parental death. There is a need for healthcare professionals to engage, encourage and equip parents, as they prepare their children throughout the end of life experience for the inevitable death of a parent.

scholarly journals ‘Don’t forget the children’: a qualitative study when a parent is at end of life from cancer

2021 ◽  
Author(s):  
Eilís McCaughan ◽  
Cherith J. Semple ◽  
Jeffrey R. Hanna
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Life Experience ◽  
Psychosocial Support ◽  
Structured Interviews ◽  
Funeral Directors ◽  
Bereaved Parents ◽  
Health And Social Care ◽  
Death Of A Parent ◽  
The Future

Abstract Purpose Preparation for end of life is one of the greatest challenges faced by parents with cancer who have dependent children (< 18 years old), with requirement for support from professionals. The aim of this study is to explore how parents can be best supported in relation to their children, when a parent is at end of life from cancer. Methods This is an interpretive qualitative study, using 79 semi-structured interviews with parents at end of life (n3), bereaved parents (n21), health and social care professionals (HSCPs) (n32) and funeral directors (n23). Data were analysed thematically and triangulated. Results Parents are central to preparing their children for the death of a parent. Striving for everyday ordinariness, maximising social networks, maintaining hope and making preparations for the future are helpful for families when a parent is at end of life. Most HSCPs were unaware of the challenges faced by parents at end of life, and psychosocial support was often left outside the caring realm. As a result, funeral directors noted complexities faced by the families after the death. Results are discussed under four themes: (1) communication with the children as a process, (2) coping throughout the unfolding end of life experience, (3) tension and complexities at end of life and (4) preparing for the future. Conclusions Parents should be reassured that by involving the children early in the end of life experience when the ill-parent is ‘well enough’ to parent enables them to be actively involved in supporting their child through one of the greatest life changing event. A number of recommendations are discussed for professionals.

scholarly journals ‘Don’t Forget the Children’: A Qualitative Study When a Parent Is at End of Life From Cancer

2021 ◽  
Author(s):  
Eilis McCaughan ◽  
Cherith J Semple ◽  
Jeffrey R Hanna
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Life Experience ◽  
Psychosocial Support ◽  
Structured Interviews ◽  
Funeral Directors ◽  
Bereaved Parents ◽  
Health And Social Care ◽  
Death Of A Parent ◽  
The Future

Abstract Purpose: Preparation for end of life is one of the greatest challenges faced by parents with cancer who have dependent children (<18 years old); with requirement for support from professionals. This aim of this study is to explore how parents can be best supported in relation to their children, when a parent is at end of life from cancer. Methods: An interpretive qualitative study, using 79 semi-structured interviews with parents at end of life (n3), bereaved parents (n21), health and social care professionals (HSCPs), (n32) and funeral directors (n23) Data were analysed thematically and triangulated.Results: Parents are central to preparing their children for the death of a parent. Striving for everyday ordinariness, maximising social networks, maintaining hope, and making preparations for the future are helpful for families when a parent is at end of life. Most HSCPs were unaware of the challenges faced by parents at end of life, and psychosocial support was often left outside the caring realm. As a result, funeral directors noted complexities faced by the families after the death. Results are discussed under four themes: (1) communication with the children as a process, (2) coping throughout the unfolding end of life experience, (3) tension and complexities at end of life, and (4) preparing for the future.Conclusions: Parents should be reassured that by involving the children early in the end of life experience when the ill-parent is ‘well enough’ to parent, enables them to be actively involved in supporting their child through one of the greatest life changing event. A number of recommendations are discussed for professionals.

Support for using five attributes to describe spirituality among families with a parent in hospice

2016 ◽  
Vol 15 (3) ◽  
pp. 320-327
Author(s):  
Pam Shockey Stephenson ◽  
Denice Sheehan ◽  
Ghada Shahrour
Keyword(s):  
Grounded Theory ◽  
End Of Life ◽  
Qualitative Interviews ◽  
Original Research ◽  
Everyday Lives ◽  
Death Of A Parent ◽  
The Everyday ◽  
Impending Death ◽  
Self Transcendence

ABSTRACTObjective:The importance of spirituality in the dying process is well documented. However, what spirituality means in these situations is hard to discern because few people (patients, families, researchers, or caregivers) will view spirituality in the same way. The present research supports the use of a spiritual framework consisting of five common attributes (meaning, beliefs, connections, self-transcendence, and value) as a mechanism for viewing spirituality for people nearing the end of life. Using qualitative interviews from two related studies, our study aims to describe the prevalence of spirituality and its nature according to these five spiritual attributes.Methods:Data from two previous studies were analyzed. The first employed the methods of grounded theory to understand the strategies adolescents used to manage the impending death of a parent. Some 61 participants from 26 families were interviewed, including ill parents/patients, well parents/caregivers, and adolescents. The second study consisted of 15 interviews with the surviving parent and adolescents from 6 of these families after the death of the parent.Results:The original research from which these data were drawn did not seek to describe spirituality. However, spiritual themes were prevalent in the stories of many participants and included each of the five spiritual attributes.Significance of Results:Our findings demonstrate the prevalence of spirituality in the everyday lives of these families and supports the use of the spiritual framework according to the five common attributes to describe spirituality.

scholarly journals Memories of Lost Loved Ones

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 606-606
Author(s):  
Emily Mroz ◽  
Susan Bluck ◽  
Deborah Carr
Keyword(s):  
End Of Life ◽  
Life Experience ◽  
Life Experiences ◽  
Emotional Adjustment ◽  
Later Life ◽  
Loved One ◽  
Complex Relation ◽  
The Us ◽  
Advance Care ◽  
Grief Responses

Abstract The death of a loved one is a challenging but also normative occurrence in later life (e.g., Thomson et al, 2018). Experiencing the death of others typically increases with age, so personal reaction to loss becomes an ongoing process (Harrop et al., 2016). When adults lose someone, the deceased person is often ‘gone but not forgotten.’ That is, they are remembered over time (Klass & Steffen, 2017). The way one remembers their lost loved one’s life and their death (e.g., Mroz et al., 2019) may influence post-loss emotional adjustment and personal views. This symposium brings together Psychology and Sociology researchers with data from Germany, the US, and China whose work elucidates the complex relation between loss and memory: we identify how remembering lost loved ones relates to both adaptive and difficult outcomes. In this symposium, Wolf et al. examine beneficial and harmful ways of using autobiographical memories after a personal loss. Mroz and Bluck identify how grief responses in older adult widows lead to functional use of memories from the very end of the spouse’s life. Fu and Idler focus on the directive function of autobiographical memory, examining how memory for end-of-life experience with loved ones influences current choices for aggressive end-of-life care. Bolkan and Weaver examine how early life experiences with loss influence later personal views and advance care planning. Our Discussant, Debby Carr, integrates these talks to elucidate how remembering loss experiences relate to not only current grief, but also to people’s preparations for the future.

When Death With Dementia Is “A Memory Seared in My Brain”: Caregivers’ Recommendations to Health Care Professionals

2019 ◽  
Vol 39 (11) ◽  
pp. 1195-1202
Author(s):  
Cynthia Hovland
Keyword(s):  
Health Care ◽  
Content Analysis ◽  
End Of Life ◽  
Family Caregivers ◽  
Health Care Professionals ◽  
Life Experience ◽  
Qualitative Content Analysis ◽  
Qualitative Interviews ◽  
Family Members ◽  
Professional Health

The purpose of this study is to determine family caregivers’ recommendations for professional health care professionals on how to help prepare them for the death of an elder with dementia. Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyze the data. Three primary themes emerged: (a) Educate Caregivers, (b) Lead Caregivers, and (c) Provide a Caring and Compassionate Presence. The results highlight the importance of various health care professionals’ roles in preparing family caregivers for a death. In doing so, both the dying and their caregivers may have a better end-of-life experience with improved bereavement outcomes.

Introduction: Kinship Bereavement in Later Life

1997 ◽  
Vol 35 (1) ◽  
pp. 1-7 ◽  
Author(s):  
Brian De Vries
Keyword(s):  
Adult Child ◽  
Later Life ◽  
Short Term ◽  
Traumatic Grief ◽  
Death Of A Parent ◽  
De Vries ◽  
Longitudinal Effects ◽  
Analysis Of Variation

This article introduces a volume devoted to the examination of later-life bereavement: an analysis of variation in cause, course, and consequence. Six articles address and represent this variation and comprise this volume: 1) Prigerson et al. present case histories of the traumatic grief of spouses; 2) Hays et al. highlight the bereavement experiences of siblings in contrast to those spouses and friends; 3) Moss et al. address the role of gender in middle-aged children's responses to parent death; 4) Bower focuses on the language adopted by these adult children in accepting the death of a parent; 5) de Vries et al. explore the long-term, longitudinal effects on the psychological and somatic functioning of parents following the death of an adult child; and 6) Fry presents the short-term and longitudinal reactions of grandparents to the death of a grandchild. A concluding article is offered by de Vries stressing both the unique and common features of these varied bereavement experiences touching on some of the empirical issues and suggesting potential implications and applications.

scholarly journals Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare

2020 ◽  
pp. 026921632096649
Author(s):  
Kristin Bindley ◽  
Joanne Lewis ◽  
Joanne Travaglia ◽  
Michelle DiGiacomo
Keyword(s):  
Palliative Care ◽  
Social Welfare ◽  
End Of Life ◽  
Financial Burden ◽  
Qualitative Interviews ◽  
Housing Assistance ◽  
Structural Determinants ◽  
Psychosocial Sequelae ◽  
Framework Approach ◽  
Informal Carers

Background: Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life. Aim: To explore ways in which palliative care and welfare sector workers perceive and approach experiences and needs of the carers of people with life-limiting illnesses who receive government income support or housing assistance, in an area of recognised socioeconomic disadvantage. Design: An interpretive descriptive study employed in-depth, qualitative interviews to explore participants’ reflections on working with carers of someone with a life-limiting illness. Data were analysed using the framework approach. Setting/participants: Twenty-one workers employed within three public services in Western Sydney were recruited. Results: Workers articulated understandings of welfare policy and its consequences for carers at end-of-life, including precariousness in relation to financial and housing circumstances. Identified resources and barriers to the navigation of social welfare needs by carers were categorised as personal, interpersonal and structural. Conclusions: Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life.

Improving the End-of-Life Experience for Family Members of Cancer Patients Who Die on the Oncology Ward: The Three Wishes Project (SCI922)

2021 ◽  
Vol 61 (3) ◽  
pp. 681-682
Author(s):  
Gwenyth Day ◽  
Marilyn Swinton ◽  
Danielle Bear ◽  
Peter Phung ◽  
Allegra Bell ◽  
...  
Keyword(s):  
End Of Life ◽  
Cancer Patients ◽  
Life Experience ◽  
Family Members ◽  
Oncology Ward

Pediatric End of Life Care: Impact of Islamic Faith

2021 ◽  
pp. 019394592110165
Author(s):  
Shahad A. Hafez ◽  
Julia A. Snethen ◽  
Emmanuel Ngui ◽  
Julie Ellis ◽  
Murad Taani
Keyword(s):  
Saudi Arabia ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Experience ◽  
Primary Caregivers ◽  
Positive Influence ◽  
Future Research ◽  
Life Care ◽  
Beliefs And Practices ◽  
Education Practice

Studies investigating children and families’ experiences at end of life in Saudi Arabia are limited. However, one factor found to have an impact on patient and primary caregiver end of life care is Islam. Since women are the primary caregivers for children in Saudi Arabia, the purpose of this study was to explore the perceptions of Muslim women caring for a child at end of life. Using a qualitative approach, interviews were conducted with 24 female primary caregivers caring for a child at end of life. Thematic analysis was used to analyze the data. The researchers found that Islamic beliefs and practices had a positive influence on primary caregivers’ experiences. Islamic beliefs and practices helped support participants through their child’s end of life experience. Results have implications for health care education, practice, policy, and future research on end of life in Saudi Arabia other Muslim countries.

scholarly journals What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents

2021 ◽  
pp. 026921632110233
Author(s):  
Cari Malcolm ◽  
Katherine Knighting
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Service ◽  
Life Care ◽  
Care Providers ◽  
Specialist Care ◽  
Bereaved Parents ◽  
Home Based ◽  
Qualitative Interview Study ◽  
At Home

Background: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely reported, particularly from the perspective of parents who experienced the death of a child at home. Aim: To explore the value and assess the effectiveness of an innovative model of care providing home-based, end-of-life care as perceived by families who accessed the service. Design: A qualitative descriptive study design was employed with in-depth semi-structured interviews conducted with bereaved parents. Setting/participants: Thirteen bereaved parents of 10 children supported by the home-based end-of-life care service. Results: Parents reported effective aspects of end-of-life care provided at home to include: (1) ability to facilitate changes in preferred place of death; (2) trusted relationships with care providers who really know the child and family; (3) provision of child and family-centred care; (4) specialist care and support provided by the service as and when needed; and (5) quality and compassionate death and bereavement care. Parents proposed recommendations for future home-based end-of-life care including shared learning, improving access to home-based care for other families and dispelling hospice myths. Conclusion: Parents with experience of caring for a dying child at home offer valuable input to future the policy and practice surrounding effective home-based, end-of-life care for children. New models of care or service developments should consider the key components and attributes for effective home-based end-of-life identified by bereaved parents in this study.

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