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Palliative care

A possibility for strengthening family life and health: Family members’ lived experience when a sick child receives home care in Sweden

Background: Families often prefer home care to hospital care, and home‐care services for ill children are increasing worldwide with limited knowledge of families’ needs during curative and palliative home care. The aim of this study was to elucidate family members’ lived experience when a sick child received home care from county‐based primary healthcare services.

Tue, 01/31/2023 - 09:41

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

Short break and emergency respite care: what options for young people with life-limiting conditions?

Background: Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care.

Objective: To explore alternative short break and emergency respite care options to children's hospice care.

Methods: A two-phase evaluation with young people, families and professionals.

Tue, 01/17/2023 - 09:44

Examining the experiences of fathers of children with a life-limiting illness

Families who have a child diagnosed with a life-limiting illness (LLI) face substantial challenges resulting from the complexity and devastating impact of the condition and potential closeness of death. The experiences of fathers of a child with LLI have been understudied; therefore, this study explored the stresses, experiences, and strategies of these fathers, including their perceptions about support needs. Based on grounded theory, in-depth semi-structured interviews were conducted with 18 fathers of children with LLI. Six fathers had experienced the death of their child.

Mon, 01/16/2023 - 12:49

Supporting ill children to be cared for at home

In 2006, WellChild instigated its WellChild Children's Nurse programme, which provides practical and emotional support to children with exceptional health needs and their families, enabling children to leave hospital and be cared for at home wherever possible. Some sit within community children's nursing teams, but all liaise with hospital and community colleagues, often spanning several teams within a region as well as other specialist nurses, such as palliative and learning disability nurses.

Wed, 01/11/2023 - 16:57

Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study

Background: The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about relevant outcome domains for children with severe neurological impairment and their families.

Aim: The aim of this study was to identify meaningful outcome domains of pediatric palliative care for children with severe neurological impairment and their families.

Tue, 01/10/2023 - 16:38

Parent-Child Communication Outcomes of a RCT Testing a Legacy Intervention for Children with Advanced Cancer (GP703)

Objectives: Explain gaps in legacy research for pediatric palliative care and oncology. Explain key components of our legacy intervention for children with advanced cancer. Explain methods of our study that was part of a larger RCT. Importance: Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication. Objective(s): We examined the impact of a legacy intervention on parent-child communication.

Wed, 12/28/2022 - 20:14

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

Perspectives on Palliative Care Among Duchenne Muscular Dystrophy Patients and Their Families in Singapore

Introduction: With better medical care, patients with Duchenne muscular dystrophy (DMD) now live longer but face more complex medical and social needs. This study described the perceptions of DMD patients and their families of disease-specific palliative care services in Singapore.

Wed, 12/21/2022 - 08:52

Understanding the bereavement experience of grandparents following the death of a grandchild from a life‐limiting condition: A meta‐ethnography

Aim: To increase understanding of grandparental grief following the death of a grandchild from a life‐limiting condition.

Design: Meta‐ethnography.

Data sources: Academic Search Complete CINHAL, Embase, psycINFO, PubMed and Web of Science, supplemented by manual search strategies (in 2015, updated 2018).Review methodsStudies were appraised and synthesized using the principles of meta‐ethnography.

Wed, 12/21/2022 - 08:43

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