AIM: A follow-up conversation with bereaved parents is a relatively well-established intervention in paediatric clinical practice. Yet, the content and value of these conversations remain unclear. This review aims to provide insight into the content…
BACKGROUND: Losing a child tragically impacts the well-being and functioning of parents. With these effects extending beyond emotional, physical morbidity and compromising self-perceptions, appropriate, longitudinal, timely and personalised support…
Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in…
The purpose of this study was to explore parents' and health care professionals' perception of parents' experiences in making decisions between acute and palliative therapies along the trajectory of their child's life-limiting condition. An…
Objectives: To investigate the focuses and trends of the studies on pediatric palliative care (PPC) and provide directions for future research. Method(s): Relevant papers about PPC published from 2004 to 2018 were analyzed using bibliometric analysis…
This study investigated parents' and health care providers' perspectives of their communicative interactions when a seriously ill infant is treated in an intensive care nursery. Both parents and health care providers stressed the importance of…
OBJECTIVES: To evaluate the quality of care offered to terminally ill children and their families in the last days of life in two Brazilian Paediatric Intensive Care Units (PICUs) from the parents' perspectives. METHODS: This was a qualitative,…
If untreated, most children with severe combined immunodeficiency disorder (SCID) will die of complications of infection within the first 2 years of life. Early hematopoietic stem cell transplant (HSCT) is the current standard of care for this…
Abstract
Medium- and long-term outcomes have been collected and described among survivors of neonatal intensive care units for decades, for a number of purposes: (1) quality control within units, (2) comparisons of outcomes between NICUs, (3)…
BACKGROUND: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. OBJECTIVES: Evaluate the use and feasibility of the Paediatric Carer Support Needs…
BACKGROUND: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. OBJECTIVES: Evaluate the use and feasibility of the Paediatric Carer Support Needs…
OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible…
OBJECTIVE: To determine bereaved parents' perceptions about participating in autopsy-related research and to elucidate their suggestions about how to improve the process. STUDY DESIGN: A prospective multicenter study was conducted to collect tumor…
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…
BACKGROUND: An estimated 21 million children worldwide would benefit from palliative care input and over 7 million die each year. For parents of these children this is an intensely emotional and painful time through which they will need support.…
OBJECTIVE: To explore the influence of the Amulet artwork and exhibition on midwifery students' perceptions of caring for parents experiencing perinatal death. DESIGN: A descriptive qualitative design involving face-to-face semi-structured interviews…
This paper reports a study of the nature and prevalence of behaviour problems in 258 children with mucopolysaccharide disorders. Questionnaire data obtained through the post was supplemented by home visits to 42 families in the sample and by regular…
BACKGROUND:
Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or…
Awareness is growing that young adults may have distinctive experiences of adult healthcare and that their needs may differ from those of other adult users. In addition, the role of adult health teams in supporting positive transitions from…
BACKGROUND: Planning for care at the end of life (EoL) is an essential component of support and care for families of children with life-limiting conditions. The purpose of this review was to compare documented EoL planning with published children's…
The COVID-19 pandemic has caused health care facilities to restrict visitors for patients in all care settings. Most pediatric care facilities have restricted visitation to one parent at a time, unfortunately even if the child is in critical…
OBJECTIVES: Care for children with severe neurologic impairment (SNI) often involves complex medical decision-making where therapeutic alliance between clinicians and families is essential. Yet, existing data suggest that communication and alliance…
OBJECTIVES: To assess parents' and health care providers' perceptions of the name and description of a pediatric palliative care (PPC) program. METHODS: Survey conducted at three pediatric health care sites; asked respondents (parents and staff)…
Objective To develop a measure of parent adjustment related to caring for a child with achronic illness and to evaluate the reliability and validity of the measure with a group of parentsof children with brain tumors. Methods One-hundred forty-nine…
Over the past decade, veteran parents who have lived a neonatal intensive care unit (NICU) experience have become increasingly involved as 'resource parents' to provide peer-to-peer support to "new" NICU parents. These parents can provide a unique…
Grounded theory analysis was used to generate an explanation of the phenomenon of meaning reconstruction in the experience of 10 bereaved mothers. The theory that emerged included three phases in the process of meaning reconstruction: discontinuity,…
Most pediatricians have experienced uneasy interactions involving patients and/or their parents. The majority of literature on this topic reflects encounters in adult medicine, without providing much information for pediatricians who also face this…
BACKGROUND: Paediatric palliative care (PPC) is an active, total approach to the holistic care of the child and family. Close, long-lasting relationships between healthcare professionals and parents in paediatric palliative care enhance quality,…
Background Children with life-limiting conditions are living longer, so relationships between nurses and families can span decades (Maunder 2013)2. Although long-term relationships between nurses and children/families in paediatric palliative care…
Purpose Parents' perceptions of their child's suffering affect their bereavement experience. Identifying factors that shape parental perceptions of suffering could help build effective supportive interventions for children and parents navigating EOL…
BACKGROUND: This study examined care needs and utilisation of psychosocial support services among parents of children who had received specialist paediatric palliative care, as well as the relationship between need fulfilment and grief. Possible…
The changes that parents face when caring for a child with a life-limiting condition at home can affect them on a spiritual level. Yet, indications remain that parents do not feel supported when dealing with spiritual issues related to caring for a…
BACKGROUND: Children with medical complexity need complex assistance, that considerably affects caregivers' quality of life. They often need multiple medications, with a consequent relevant risk of errors or poor compliance. Galenic (or compounded)…
This paper uses panel data from the Statistics Canada National Longitudinal Survey of Children and Youth (1994 through 2000) to study the implications of parenting a child with a disability or chronic condition for subjective assessments of parental…
OBJECTIVES: Around the world, the PICU is one of the most common sites for hospitalized children to die. Although ensuring the best possible care experience for these children and their families is important, clear recommendations for end-of-life and…
BACKGROUND: Entering the paediatric intensive care unit with a critically ill child is a stressful experience for parents. In addition to fearing for their child's well-being, parents must navigate both a challenging environment and numerous new…
Pediatric palliative care is an evolving field of practice in social work. As such, research plays a critical role in informing best social work practices in this area. For parents, caring for a child with a life-limiting illness (LLI) is a stressful…
BACKGROUND: The Chochinov Dignity Model was developed based on a cohort of adult patients with advanced cancer, but its role among dying children is not clear. This study aims to develop a model of dignity for children receiving pediatric palliative…
