This paper reports the findings of a qualitative study on the positive impacts of children with an intellectual disability on their families. The study identified nine core themes: source of joy and happiness; increased sense of purpose and…
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,…
Developmental changes in children's acquisition of death concepts and in their emotional reactions are reviewed. Moderating variables that may affect the nature of grieving processes after parental or sibling death are discussed, including…
Three assumptions guiding research and clinical intervention strategies for people coping with sudden, traumatic loss are that (a) people confronting such losses inevitably search for meaning, (b) over time most are able to find meaning and put the…
OBJECTIVES: To gauge the perspectives of adolescents and adults with cystic fibrosis (CF) and their parents regarding the transition from paediatric to adult-oriented health care. METHODS: Cross-sectional survey using an anonymous, semi-structured…
BACKGROUND: Birth defects impose substantial costs on both families and society because of medical, developmental, and special education needs. Caring for children with birth defects also may influence caregiver time and impact the family. However,…
A child in a vegetative state may present difficult decisions for physicians and families regarding the course of treatment. We report a case of a child who entered a prolonged vegetative state following status epilepticus. The child's parents…
The Grief Experience Inventory (GEI) and the MMPI were used to assess bereavement reactions in 102 newly bereaved individuals; 107 controls were also assessed. Intensities of bereavement reactions were compared across three types of deaths…
Examined the function of The Compassionate Friends (TCF), a self-help group for effective intervention in the severe bereavement after the death of a child, using a participant observation research method. Three decisions form the framework of the…
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…
A retrospective study was undertaken of 25 families and their 26 ill children attending the first children's hospice in the United Kingdom. The study examined the family's perceptions of the care offered and the impact of chronic and life threatening…
An increasing body of research suggests that the death of a child results in a unique form of bereavement for surviving parents. A study reviewed research findings on parental bereavement, including those from the author's ongoing longitudinal study.…
The parents of a child who dies feel the emotions of shock, mourning, and confusion as they slowly come to accept the finality of the child's death. In contemporary America they frequently feel isolated and abandoned. The individuals and institutions…
Parents who experience the sudden death of a child will interact with many professionals in the period immediately following the death notification through to the funeral. The way these professionals respond to the parents during this critical period…
This study was undertaken to determine which parental concerns are most associated with significant behavioral/emotional problems and the extent to which parents' concerns can be depended on in the detection of mental health problems. An additional…
Although non-compliance in pediatric liver transplants is known to be a major cause of late graft loss and patient mortality, follow-up seems inconsistent. As liver transplant becomes a luxury because of the shortage of organs, the need to maximize…
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…
OBJECTIVES: To determine which staff behaviours and interventions were helpful to a family who had a child die in the intensive care unit (ICU) and which behaviours could be improved. METHODS: Families whose child died six to 18 months earlier were…
This article compares the outcome and predictors of psychosocial distress of parents bereaved by young suicides, sudden infant death syndrome (SIDS), and child accidents. One objective is to explore whether suicide bereavement is more difficult for…
To obtain parents' identification and description of the behaviors, health care procedures and daily living situations associated with pain in children with cerebral palsy (CP), surveys were sent to parents of children with CP recruited via a clinic…
Systematic assessment of the effect of clinical research studies on child and parent participants has been limited. Such assessment could provide an empirical basis for the ethical conduct of research, assisting investigators and institutional review…
OBJECTIVE: Most children enjoy healthy childhoods with little need for specialized health care services. However, some children experience difficulties in early childhood and require access to and utilization of considerable health care resources…
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…
Child and family involvement is key to improving the quality of children's hospice services. This article reports on a quality assurance initiative undertaken as one component of a clinical governance strategy. Service users participated in focus…
OBJECTIVES: An agreement among physician, nurse, and family on the issue and a solution developed by all will improve the quality of work. The aims of this study were to determine health care professionals' (physicians and nurses) attitude toward…
The purpose of this article is to explore the concept of perinatal grief and evidence-based healing interventions for it. The loss of a pregnancy or death of an infant causes profound grief, yet society has long minimized or ignored this grief, which…
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…
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)…
Stress, burden, and sorrow are not surprising responses for mothers of children who acquire life-altering disabilities. What is largely unforeseen is how maternal caregivers transform in positive ways through trauma and diversity. This article offers…
This longitudinal study examined the relative impact of major variables for predicting adjustment (in terms of both grief and depression) among bereaved parents following the death of their child. Couples (N = 219) participated 6, 13, and 20 months…
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…
