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end‐of‐life

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

End‐of‐life priorities of older adults with terminal illness and caregivers: A qualitative consultation

Background: As older adults approach the end‐of‐life (EOL), many are faced with complex decisions including whether to use medical advances to prolong life. Limited information exists on the priorities of older adults at the EOL. Objective: This study aimed to explore patient and family experiences and identify factors deemed important to quality EOL care.

Tue, 09/10/2019 - 17:11

A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia

Background Dementia is a progressive neurodegenerative condition characterized by declining functional and cognitive abilities. The quality of end of life care for people with dementia in the UK can be poor. Several difficult decisions may arise at the end of life, relating to the care of the person with dementia, for example management of comorbidities. Objective To explore difficulties in decision making for practitioners and family carers at the end of life for people with dementia.

Wed, 04/03/2019 - 10:57

Structural impact on gendered expectations and exemptions for family caregivers in hospice palliative home care

Evidence of gender differences in the amount and type of care provided by family caregivers in hospice palliative home care suggests potential inequities in health and health care experiences. As part of a larger critical ethnographic study examining gender relations among clients with cancer, their family caregivers and primary nurses, this article describes gendered expectations and exemptions for family caregivers within the sociopolitical context of end-of-life at home.

Thu, 03/28/2019 - 18:27

Carers' Experiences of End-of-Life Care: A Scoping Review and Application of Personal Construct Psychology

Objective: Individuals who care for a family member or friend at end‐of‐life experience a range of practical and emotional challenges. This paper applies a theoretical framework of personal construct psychology (PCP) to explore carers’ experiences of end‐of‐life care, with a focus on implications for their sense of identity. 

Thu, 03/07/2019 - 12:33