Published literature
Publications
Published children's palliative care research: browsable, searchable and filterable by the same taxonomy as researchers, groups and guides.
This library is curated by The Siden Research Team as part of the TRENDS in Pediatric Palliative Care newsletter and library. Learn more about TRENDS and The Siden Research Team and subscribe to read their monthly expert commentaries on their website.
Showing 1–25 of 29 publications
Exploration of the projection into the future of twins who have experienced their double's disease and bereavement using the person picking an apple from a tree drawing
Objective
Few studies have been carried out in the field of pediatric palliative care concerning the experience of siblings, especially of twins. While some research has highlighted the impact of a child's disease and bereavement on his or her siblings, to our…
Parents, Grandparents and Siblings: A Pilot Psychological Intervention Study in Pediatric Palliative Care
Portugal has approximately 8,000 children with life-limiting conditions. A need to psychological support has been identified, so an innovative online intervention study for families was developed. The aim is to explore potential effects of three intervention p…
"What about me?": lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition
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 themselves…
Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members
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 preferenc…
Parent-Reported Caregiving Roles of Siblings of Children with Inborn Errors of Metabolism
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 hypothesize that t…
Psychosocial well-being of siblings of pediatric patients in palliative home care
CONTEXT: Despite the proposed high burden of siblings of children and adolescents with life limiting conditions receiving pediatric palliative care (PPC) at home, little is known about their psychosocial well-being. METHODS: In this prospective, cross-sectiona…
The experience and perceptions of siblings of pediatric intensive care unit patients: A qualitative study
Over 200,000 patients are admitted into pediatric intensive care units (PICU) annually in North America, exposing families to extreme psychosocial stressors and adverse outcomes. While previous research has shown PICU patients and their parents experience post…
Using Communication Tools to Explore Young Siblings' Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs
Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with palliative care…
Coping with cystic fibrosis: An analysis from the sibling's point of view
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 chronic disea…
Programmes to prepare siblings for future roles to support their brother or sister with a neurodisability: protocol of a scoping review
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 psychologic…
Bereavement care interventions for children under the age of 18 following the death of a sibling: a systematic review
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 adulthood. …
Communication between parents and well-siblings in the context of living with a child with a life-threatening or life-limiting condition
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 help with…
Evaluation of a Manualized Group Program for Siblings of Children with Diseases or Disabilities
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 activate …
Sibling mortality burden in low-income countries: A descriptive analysis of sibling death in Africa, Asia, and Latin America and the Caribbean
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 mortality in lower…
The Effect of Theraplay on Prolonged Grief and Post-Traumatic Stress Disorder in Bereaved Siblings of Children with Cancer: A Preliminary Study
Background: Death of any of siblings is an overwhelming, severe, and prolonged challenge in children development process and is a major risk factor for psychiatric disorders in childhood and later. Interventions for bereaved families following a child’s death …
Grief and growth in bereaved siblings: Interactions between different sources of social support
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 buffer the…
Healthcare Users' Experiences of Communicating with Healthcare Professionals About Children Who Have Life-Limiting Conditions: A Qualitative Systematic Review
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 palliative care. O…
Association of mortality with the death of a sibling in childhood
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: To examine …
Continuing bonds with the living: bereaved parents’ narratives of their emotional relationship with their children
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. This narrative inqu…
Spirituality and religious coping are related to cancer-bereaved siblings’ long-term grief
Objective Many bereaved siblings have still not come to terms with their grief many years after the loss, but few studies have focused on what can help. The aims of this study were to identify cancer-bereaved adolescents’ and young adults’ ways of coping with …
The impact of a sibling's life-limiting genetic condition on adult brothers and sisters
It is estimated that rare diseases affect the lives of over three million people in the United Kingdom. Of these, a significant proportion are children and young people with genetic life-limiting or life-shortening conditions. This study used a qualitative app…
Bereaved Siblings' Advice to Health Care Professionals Working With Children With Cancer and Their Families
INTRODUCTION: Siblings of children with cancer experience psychosocial distress during the illness and after bereavement, but often stand outside the spotlight of attention and care. This study explored bereaved siblings' advice to health care professionals (H…
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