Browse Items (20 total)

Being a parent of a child with spinal muscular atrophy (SMA), a disease that causes progressive muscle weakness, involves a range of challenges. The purpose of this study was to explore what advice parents of children with severe SMA, in absence of…

Communication is as important as the drug and the knife in medical care, particularly when patients are facing life-threatening conditions. However, the ability to communicate effectively has been commonly associated with strong emotional barriers…

BACKGROUND AND AIMS:: Children with severe spinal muscular atrophy have complex care needs due to progressive muscle weakness, eventually leading to respiratory failure. To design a care system adapted to families' needs, more knowledge about…

OBJECTIVE: To examine the relationship between nurse knowledge, work environment, and registered nurse (RN) turnover in perinatal hospice and palliative care organizations. METHODS: Using nurse intellectual capital theory, a multivariate analysis was…

CONTEXT.: The death of a child from cancer affects the entire family. Little is known about the long-term psychosocial outcomes of bereaved siblings. OBJECTIVES: To describe 1) the prevalence of risky health behaviors, psychological distress, and…

Open and honest communication has been identified as an important factor in providing good palliative care. However, there is no easy solution to if, when and how parents and a dying child should communicate about death. This paper reports how…

Purpose:To assess adolescent and young adult siblings' perception of social support prior to and following the loss of their brother or sister to cancer, 2 to 9 years earlier, and their anxiety at follow-up. Method: In 2009, 174 (73%) bereaved…

BACKGROUND: We studied the relation between unrelieved symptoms in terminally ill children and the psychological well-being in the bereaved parents 4-9 years after their loss. PROCEDURE: We contacted parents in Sweden who had lost a child to a…

OBJECTIVE: In a population-based nationwide survey, we aimed to study symptoms in children with malignancies during the last month of their lives. Understanding which symptoms affect children in the terminal phase of disease is crucial to improve…

BACKGROUND: Parental feelings of guilt can be a serious problem after the death of a child to a malignancy. This study identified predictors of feelings of guilt in parents during the year after a child's death. METHODS: The Swedish Cause of Death…

A proposed nationwide postal questionnaire to Swedish parents who had lost a child due to cancer between 1992 and 1997 was denied approval by the local ethics committee. However, a pilot study to assess the harm and benefit of the questionnaire was…

BACKGROUND: Some consider the loss of a child as the most stressful life event. When the death is caused by a malignancy, the parents are commonly exposed not only to their own loss, but also to the protracted physical and emotional suffering of the…

BACKGROUND: One of the questions faced by the parents of a child who is terminally ill with a malignant disease is whether or not they should talk about death with their child. METHODS: In 2001, we attempted to contact all parents in Sweden who had…

OBJECTIVE: Our aim was to explore bereaved siblings' positive and negative memories and experiences of their brother's or sister's illness and death. METHOD: In our nationwide Swedish study, 174 of 240 (73%) bereaved siblings participated, and 70%…

Open and honest communication has been identified as an important factor in providing good palliative care. However, there is no easy solution to if, when, and how parents and a dying child should communicate about death. This article reports how…

Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with…

OBJECTIVE:
To explore experiences and wishes of bereaved parents concerning end-of-life care for their child with severe spinal muscular atrophy.

STUDY DESIGN:
A follow-up survey was conducted in 2013 on parents of deceased Swedish children who were…
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