BACKGROUND:
This study explored psychological adjustment and sibling relationships of siblings of children with life-limiting conditions (LLCs), expanding on previous research by defining LLCs using a systematic classification of these…
BACKGROUND: There is a lack of knowledge regarding siblings' experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings' perspectives are often expressed through their parents and not by siblings…
Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterised by progressive and permanent physical and cognitive decline. The impact of such conditions on families, and notably on siblings, has not yet been…
Importance: The death of a close relative is associated with an increased mortality risk among the bereaved, but much less is known about the potential association of the death of a sibling in childhood with mortality in this population. Objective:…
Importance: The death of a close relative is associated with an increased mortality risk among the bereaved, but much less is known about the potential association of the death of a sibling in childhood with mortality in this population. Objective:…
This qualitative study explored bereaved parents’ and siblings’ reports of legacies created by children with advanced cancer. Participants included 40 families of children who died from cancer, with 36 mothers, 27 fathers, and 40 siblings (ages 8-18…
BACKGROUND: Childhood bereavement after sibling death is common, but often unrecognized. The psychosomatic and socioeconomic outcomes of bereaved children can be compromised if appropriate care is unavailable during the formative years leading into…
This study explored the experiences and needs of nine parents who had received hospital-based bereavement support following the death of their child from cancer, in Western Australia. Six prominent themes emerged from thematic data analysis: personal…
OBJECTIVE: To evaluate the impact of a family-based group intervention for young siblings of children with chronic illness and developmental disability (CI/DD). METHODS: Forty-three healthy siblings (ages 4-7 years) of children with CI/DD and their…
IMPLICATIONS FOR PRACTICE: Our findings offer guidance to improve aftercare for bereaved siblings and their families. Additional research is needed to further delineate the needs of bereaved siblings and to develop strategies to promote adaptation to…
A significant population of children will experience bereavement because of the death of a parent or a sibling. This grief is different from the bereavement seen in adults and needs to be understood in a developmental context. Cognitive and emotional…
Effective parent-child communication may serve to buffer the potential negative impacts of stressful situations on a child. Children who have a brother or sister with a life-threatening or life-limiting medical condition may turn to their parents for…
Abstract
The death of a child can be seen as one of the most devastating experiences for parents which can result in a unique and enduring grief. Parents with surviving children face the task of navigating their own grief while continuing to parent.…
Abstract Background Cystic fibrosis (CF) is a chronic, life-threatening condition that results in life-long morbidity and premature mortality. CF has a significant impact on healthy siblings' adaptation and well-being. Siblings of patients with a…
BACKGROUND: Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects…
BACKGROUND: Models of palliative care need to address the unmet needs of children, young people and families. OBJECTIVE: To undertake an integrative review to identify the key elements of optimal paediatric palliative care from the perspectives of…
Evaluation of a Manualized Group Program for Siblings of Children with Diseases or Disabilities This study evaluates a manualized group program for siblings of children with life-threatening/life-limiting diseases or disabilities. The program aims to…
The objective was to characterize the relation between different sources of school-based social support (friends, peers, and teachers) and bereaved siblings’ grief and grief-related growth and to examine whether nonparental sources of social support…
Background: Globally, an estimated eight million children could benefit from palliative care each year. Effective communication about children with life-limiting conditions is well recognized as a critical component of high-quality pediatric…
CONTEXT: Public and patient involvement is increasingly becoming an expectation of research funders and policy makers. Not all areas of health research are public-facing. Here, we outline an approach for building the skills and developing the…
Siblings of patients that have lengthy stays in the neonatal intensive care unit (NICU) may be affected emotionally by their brother’s or sister’s condition, separation, or even death. In an effort to assess the effect of perinatal loss on siblings a…
Siblings of children with life-threatening or life-limiting illnesses can face a number of challenges, yet this is a group that is often unacknowledged as needing specific support. It is essential that the needs of siblings are recognised and…
We report two siblings with a mitochondrial respiratory chain defect who presented with progressive bulbar paralysis of childhood (Fazio-Londe disease). Mitochondrial respiratory chain defects should be considered in differential diagnosis of this…
Nearly a quarter-million children are siblings to children living with serious illness. Intense physical, emotional, social and psychological concerns are introduced when a brother or sister is diagnosed with a serious illness or disease. Support…
BACKGROUND: The aim of the present study is to describe the quality of life (QoL) of siblings of children with cancer and to predict it according to their health before the diagnosis of cancer in the ill child and their ways of coping with the…
ABSTRACT: Objectives: Research examining sibling caregiving contributions to medically complex pediatric patients, including those with inborn errors of metabolism (IEMs), is limited. We assess caregiving roles and attributes of siblings and…
OBJECTIVES: To compare peer relationships among bereaved siblings and matched classmates, and to examine gender, grade level, and time since death as moderators. METHODS: Families were recruited from cancer registries at four hospitals 3-12 months…
This paper reports the findings from a Delphi Study undertaken to identify the research priorities in children's palliative care in Ireland. Palliative care for children is a small and highly specialised field of healthcare that focuses on improving…
INTRODUCTION: Siblings share a lifelong bond in their relationship, and they may choose to provide support to their brother or sister with a neurodisability. Previous reviews summarised programmes that only focused on the behavioural, emotional and…
BACKGROUND: The role of psycho-educational interventions in facilitating adaptation to chronic disease has received growing recognition and is in keeping with policy developments advocating greater involvement of patients in their own care. The…
Several studies have been conducted on sibling psychosocial adaptation to cancer in a brother or sister, but little is known on how the long-term adaptation of siblings to the illness develops. The concept quality of life has primarily been applied…
When a child is diagnosed with a life-threatening illness, such as cancer, there is much disruption to the family. It is a struggle for parents to divide their time between the hospital, home, and other healthy siblings. Nurses strive to provide…
In high-income countries, emerging research suggests sibling bereavement can have significant health and life course consequences for young people. Yet, we know far less about its burden in lower-income countries. Due to higher fertility and…
Abstract Background: The experiences of young people who have siblings with life-limiting illnesses are not well understood. Aim: The study proposed to identify the concerns of siblings of pediatric palliative care (PPC) patients. Design and…
Objective: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. Methods: Data were collected from a sample of 70 siblings from 58…
