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Death and dying

Spiritual needs and communicating about death in nonreligious theistic families in pediatric palliative care: A qualitative study

Background: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion. Aim: To understand nonreligious theistic parents’ spirituality and to explore how parents discuss death with their terminally ill children in mainland China. Design: Qualitative study. Setting/participants: This study was conducted in the hematology oncology center at Beijing Children’s Hospital. Participants in this study included 16 bereaved parents.

Thu, 01/19/2023 - 17:41

The spiritual needs of seriously ill children and their families

Studies have documented the experiences of families with seriously ill children, but few have focused on the spiritual needs of families confronted with a child's imminent death.

Sun, 01/01/2023 - 13:39

Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18

The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method.

Wed, 12/21/2022 - 10:14

Why Is It Just So Hard? Making Sense of End-of-Life Communication Between Adult Children and Their Terminally Ill Parental Figures

Background: The aging population in the United States is predicted to become one fifth of the population by 2050. With that increase, more individuals in the country will be experiencing chronic health conditions and the need for care, with end of life (EoL) becoming more of a topic that needs to be discussed. Objectives & Methods: This study aims to explore the ways adult children talk to their parents about EoL, death, and dying.

Mon, 07/18/2022 - 21:00

Family Caregiving and Place of Death: Insights From Cross-national Analysis of the Harmonized End-of-Life Data

Objectives: Family is largely overlooked in research on factors associated with place of death among older adults. We determine if family caregiving at the end of life is associated with place of death in the United States and Europe. Method: We use the Harmonized End of Life data sets developed by the Gateway to Global Aging Data for the Survey of Health, Ageing and Retirement in Europe (SHARE) and the Health and Retirement Study (HRS).

Fri, 05/27/2022 - 14:32

Caring ahead: Mixed methods development of a questionnaire to measure caregiver preparedness for end-of-life with dementia

Background: Family caregivers of persons with dementia often feel unprepared for end-of-life and preparedness predicts caregiver outcomes in bereavement. Existing questionnaires assessing preparedness have limitations. A multi-dimensional questionnaire assessing family caregiver preparedness for the end-of-life of persons with dementia is needed to identify caregivers at risk for negative outcomes in bereavement and evaluate the quality of strategies within a palliative approach.

Thu, 01/27/2022 - 12:07

When Death With Dementia Is "A Memory Seared in My Brain": Caregivers' Recommendations to Health Care Professionals

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.

Mon, 02/03/2020 - 18:05

Authenticity, ambivalence and recognition in caring at the end of life and beyond

Informal caring at the end of life is often a fraught experience that extends well beyond the death of the person receiving care. However, analyses of informal carers' experiences are frequently demarcated relative to death, for example in relation to anticipatory grief (pre-death) or grief in bereavement (post-death).

Mon, 09/30/2019 - 14:37

Preparedness for caregiving: A phenomenological study of the experiences of rural Australian family palliative carers

The care of people with life-limiting illnesses is increasingly moving away from an acute setting into the community. Thus, the caregiver role is growing in significance and complexity. The importance of preparing and supporting family caregivers is well established; however, less is known about the impact of rurality on preparedness and how preparedness shapes the caregiving continuum including bereavement. The aim of this study, conducted in 2017, was to explore how bereaved rural family palliative carers described their preparedness for caregiving.

Tue, 06/25/2019 - 13:25

Barriers and Facilitators to Preparedness for Death: Experiences of Family Caregivers of Elders with Dementia

Less is known about how caregivers prepare (or not) for the death of a family member with dementia. This study's purpose was to explore how caregivers handle these dementia deaths, including identification of barriers and facilitators to preparing caregivers for the death of an elder family member dying with dementia. This qualitative, descriptive study employed a purposive sampling strategy in which the principal investigator interviewed 36 caregivers of family members age 65 and older who died from a dementia-related diagnosis. Directed content analysis was used to analyze the data.

Tue, 06/18/2019 - 16:47

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