Skip to content

Toggle service links

You are here

  1. Home
  2. End of life

End of life

Navigating the terrain of moral distress: Experiences of pediatric end-of-life care and bereavement during COVID-19

Objective: Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers’ moral distress.

Thu, 06/09/2022 - 10:48

'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

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.

Tue, 06/07/2022 - 19:11

Knowledge of end-of-life wishes by physicians and family caregivers in cancer patients

Objectives: To describe communication regarding cancer patient's end-of-life (EoL) wishes by physicians and family caregivers. Methods: An online questionnaire and telephone-based surveys were performed with physicians and family caregivers respectively in three teaching hospitals in Colombia which had been involved in the EoL care of cancer patients. Results: For 138 deceased patients we obtained responses from physicians and family caregivers.

Mon, 06/06/2022 - 23:55

Feasibility of an Intervention Study to Support Families When Their Loved One Has Life-sustaining Therapy Withdrawn

Background: This investigation addressed family member perceptions of preparation for withdrawal of life-sustaining treatment in the intensive care unit. These families are at a high risk for psychosocial and physical sequelae. Methods: The quantitative results of this mixed methods study are reported. A control group received usual care and an educational booklet component of the intervention. The experimental group received the above plus exposure to comfort cart items and additional psychological support.

Mon, 05/30/2022 - 18:41

Family perceptions of quality of end of life in LGBTQ+ individuals: a comparative study

Background: Members of the lesbian, gay, bisexual, transgender, and queer community have encountered discrimination and stigmatization related to sexual orientation and/or gender identity both within healthcare establishments and in the larger community. Despite the literature describing inequities in healthcare, very little published research exists on the experiences of lesbian, gay, bisexual, transgender, and queer patients and family members in hospice care.

Mon, 05/30/2022 - 13:50

Development of the Readiness for Home-Based Palliative Care Scale (RHBPCS) for Primary Family Caregivers

Background: In Chinese or Eastern society, most end-of-life (EOL) patients still choose to die at home. However, primary family caregivers usually do not prepare themselves to face the death of patients. Therefore, a measurement of the readiness for home-based palliative care for primary family caregivers is needed. Methods: In this study, the readiness for home-based palliative care scale (RHBPCS) for primary family caregivers was developed to assess the readiness of primary family caregivers.

Wed, 02/09/2022 - 10:50

"At the End We Feel Forgotten": Needs, Concerns, and Advice from Blogs of Dementia Family Caregivers

Background: Illness blogs have been used by many individuals to describe their experiences, share knowledge, and gather support. The purpose of this study was to identify needs, concerns, and advice from the blogs of caregivers caring for a person with dementia at the end of life (EOL). Design: A qualitative thematic analysis was performed of 192 blog postings from six dementia family caregivers during the EOL. A Google search using a systematic identification method was followed. Caregivers were females caring for mothers (n = 5) and husbands (n = 1).

Thu, 01/13/2022 - 12:42

The Life Experiences Among Primary Family Caregivers of Home-Based Palliative Care

Background: An increasing number of patients with terminal illnesses prefer to die in their own homes due to aging, high medical payments, a limited number of hospitalization days, and the ability to receive care from family members.

Fri, 12/11/2020 - 16:42

The Last Day Narratives: An Exploration of the End of Life for Patients with Cancer from a Caregivers' Perspective

Background: Surviving family caregivers describe the end-of-life experience as "very distressing" and half of those surveyed indicate inadequate emotional support; however, little is known about the causes of distress on the last day of life. Objective: The purpose of this study was to explore the experience of the last day of life from the perspective of the surviving caregiver. Design: The study used a narrative inquiry approach.

Fri, 12/11/2020 - 14:19

The key aspects of online support that older family carers of people with dementia want at the end of life: A qualitative study

Objectives: Family carers towards the end of life face a range of difficult challenges and have high levels of support needs. The aim of this study was to explore the challenges carers of people with dementia face towards the end of life and the support needs which could be addressed by online support. Methods: Qualitative study using semi-structured interviews with 23 current and former family carers of people with dementia in England in 2016–2017. Interviews were analysed using thematic analysis methods.

Fri, 12/11/2020 - 14:08

Page 1 of 6