Browse Items (161 total)

BACKGROUND: Stillbirth and neonatal death are one of the most stressful life events, with negative outcomes for parents. Society does not recognize this type of loss, and parental grieving is particularly complicated and intense. PURPOSE: The aim of…

The objectives of this review were to identify strategies initiated by parents of children with life-limiting conditions to support their own well-being at home and to describe the impact of these strategies on parental well-being. A systematic…

Children with complex chronic conditions have a high need for health and social care resources. Many parents explore parallel resources such as alternative therapies, associations, psychological support, private medical consultations, and other…

Children living with medical complexities are a growing population in the United States. Supportive pediatric health care team members are arguably the single most important factor in helping mothers manage their child's multifaceted condition. To…

BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). OBJECTIVE: We piloted values clarification…

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…

This article describes one nurse's experience resulting from her interest in the value of giving bereavement photographs to parents who experience a perinatal loss. Three families were interviewed about the meaning of those photographs. The parents…

Background/Objectives: To address a service gap at the primary treating Center arising from patient overload and on holidays/weekends, Cankids Pediatric Palliative Care Center in Delhi was providing children with cancer inpatient admissions and…

BACKGROUND: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for…

Congruence between preferred and actual place of death may be an essential component in terminal care. Most patients prefer a home death, but many patients do not die in their preferred location. Specialized (physician, hospice, and palliative) home…

This manual was designed to help hospices and other health providers develop primarily home-based palliative care services for children living with life-threatening conditions. We believe that the home setting often is theweak link in the palliative…

Legacy building interventions like plaster hand molds are offered in most children's hospitals, yet little is known about how the concept of legacy is understood and described by pediatric health care providers. Therefore, this study explored…

Death or disability is much more common in multiple births than single children, especially in the perinatal period. Parents face particular problems in that their loss may be underestimated; their grieving may be impeded by the confusion between the…

Pain coping is thought to be the most significant behavioural contribution to the adjustment to pain. Little is known about how those with intellectual and developmental disabilities (IDD) cope with pain. We describe parental reported coping styles…

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…

With the current shift to include positive outcomes of trauma, this research was designed to explore factors that allow growth to occur. Structural equation modeling was used to test a model for understanding posttraumatic growth. A sample (N = 174)…

BACKGROUND: Stillbirth and neonatal death are one of the most stressful life events, with negative outcomes for parents. Society does not recognize this type of loss, and parental grieving is particularly complicated and intense. PURPOSE: The aim of…

OBJECTIVE: To create a protocol delineating the needs of patients, families, and staff necessary to provide a pain-free, dignified, family-, and staff-supported death for newborns who cannot benefit from intensive, life-extending, technological…

This article investigates the relationships of child- and family-related variables with family function in families with children who have Duchenne muscular dystrophy. Child-related variables included level of disability (indicator: Barthel Index)…

This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on…

This study is part of a longitudinal research aimed at analyzing the maintenance of negative emotional states in Rheumatoid Arthritis (RA) during the first 2 years of disease progression. The specific aims of the present study were to examine the…

Aims: Medical advances and improved neonatal care have led to increased survival of children with complex healthcare needs. The aim of this literature review was to explore what is known about the psychological impact on parents of caring for…

OBJECTIVE: To describe the use of formal respite services among caregivers of children with cerebral palsy in Ontario and discuss the factors that may contribute to respite use and non-use. METHODS: A total of 468 caregivers were interviewed about…

BACKGROUND: Health professionals have a critical role in supporting bereaved parents and rely on models of grief to inform and guide their practice. However, different models, based on fundamentally different theoretical perspectives and research…

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…

This article examines the role of artwork in cancer and palliative care. The literature review focuses on both children and adults. One case scenario focuses on a child's reaction to his mother's illness showing his distress through painting. Artwork…

Palliative care in the NICU gets a bad rap to the point where it is not even clearly described to families. There is a strong need for education and dispelling the myths that surround this very important type of support.

OBJECTIVE: First, to investigate the patterns of functional ability, depressive feelings, and social support in early stage rheumatoid arthritis (RA) patients. Second, to demonstrate the stress buffering effect of social support. Social support is…

Many models of pain give coping an important role in understanding adaptation to chronic pain. Among these, Lazarus and Folkman's cognitive-phenomenological model of stress and coping provides a theoretical framework to conceptualise stress phenomena…

A. Antonovsky (1987) defined the sense of coherence (SOC) as the ability to perceive a stressor as comprehensible, manageable, and meaningful. In this prospective study of pregnant women, the authors tested the relationships between the SOC in early…

Pain-related avoidance factors and social resources, as assessed by pain coping and social support, are supposed to have lasting effects on functional disability and pain in chronic pain disorders. As a follow-up to a prospective study demonstrating…
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