Browse Items · Pediatric Palliative Care Library

Care, connection, and social distancing: The challenges of baby loss during the COVID-19 pandemic in Aotearoa New Zealand

Problem: The COVID-19 pandemic hindered access to routine healthcare globally, prompting concerns about possible increases in pregnancy loss and perinatal death. Background: PUDDLES is an international collaboration exploring the impact of the…

Assessing HeartSong as a Neonatal Music Therapy Intervention: A Qualitative Study on Personal and Professional Caregivers' Perspectives

Abstract Background: The music therapy HeartSong intervention pairs newborn infant heartbeats with parents' Song of Kin. Formal evidence on professional and personal caregiver perspectives of this intervention is lacking. Purpose: This survey study…

‘Whose Milk Was It, Really? … It Was a Gift, a Savior, a Healer, and a Connector’: Reflections on a Collaborative Autoethnography of Breastmilk Donation after Stillbirth

This is the intertwined story of three unique individuals—each of us parents, researchers, givers and takers—who met and changed each other’s lives, whilst simultaneously struggling to comprehend and make meaning out of our own personal losses. After…

It Was a Shared Duty': Bereaved Fathers' Perspectives, Experiences and Practices in Relation to their Partner's Lactation after Infant Death

This exploratory study targets a significant gap in the lactation and bereavement literature by exploring bereaved fathers' experiences, perspectives and practices in relation to their partner's lactation after stillbirth, neonatal or infant death.…

Laying the groundwork: Building relationships for public and patient involvement in pre-clinical paediatric research

CONTEXT: Public and patient involvement is increasingly becoming an expectation of research funders and policy makers. Not all areas of health research are public-facing. Here, we outline an approach for building the skills and developing the…

Learning to Hold a Paradox': A Narrative Review of How Ambiguous Loss and Disenfranchised Grief Affects Children in Care

Separation and loss characterise a child's experience in care, yet losses in the care-experienced population have rarely been studied as a possible source of trauma or as events that may justify a grief response. A literature search of five databases…

Play in Children With Life-Threatening and Life-Limiting Conditions: A Scoping Review

IMPORTANCE: Play is essential to children and provides opportunities to promote their health and well-being. Children living with life-threatening and life-limiting conditions experience deprivation in play. OBJECTIVE: To conduct a scoping review of…

Tags: 2020, American Journal Of Occupational Therapy, April 2020 List, Child, Darlington A S, Grisbrooke J, Humans, Interpersonal Relations, Jasem Z A, Lambrick D, parent-psychology, Parents, Preschool, Psychology, Randall D C

Interactive Processes in Grief and Couples' Adjustment After the Death of a Child

The death of a child is an individual process of grief but also a context of significant relational processes, which have been only rarely considered in research. The aim of this study was to examine the interactive processes within bereaved parents.…

Tags: 2019, Albuquerque S, Bereavement, Emotions, Empathy, Ferreira L C, Grief, Grounded Theory, Human, Infant Death -- Psychosocial Factors, Interpersonal Relations, Journal Of Family Issues, May 2019 List, Narciso I, Parents -- Psychosocial Factors, Pereira M, Semi-Structured Interview, Support Psychosocial

Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers' experiences

Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital.…

The role of partner relationships in the young person's adherence to the diabetes self-care regime

BACKGROUND: This study investigated the role of partner relationships in the young person's experience of diabetes. It was predicted that those people reporting a better quality relationship would report greater social support and better diabetes…

The reflections you get': an exploration of body image and cachexia.

BACKGROUND: cachexia has a detrimental effect on quality of life and is an indicator of poor prognosis. The meanings people attach to their lived experiences of cachexia are unknown. AIMS: to explore the impact of cachexia on body image of people…

The relationship between grief adjustment and continuing bonds for parents who have lost a child

This article presents findings from a study on the impact of a child's death on parents. We explored the prominence and adaptiveness of parents' continuing bonds expressions, psychological adjustment, and grief reactions. A qualitative case study…

Assessment of everyday functioning in young children with disabilities: an ICF-based analysis of concepts and content of the Pediatric Evaluation of Disability Inventory (PEDI)

BACKGROUND: Assessment of everyday functioning in children may depend to a considerable extent on the framework used to conceptualise functioning and disability. The Pediatric Evaluation of Disability Inventory (PEDI) has incorporated the mediating…

Tags: 2006, Activities of Daily Living, Backlog, Bjorbaekmo W, Caregivers, Carlberg EB, Child, Disability And Rehabilitation, Disability Evaluation, Disabled Children, Humans, Interpersonal Relations, Journal Article, Mobility Limitation, Østensjø S, PEDI Study, Psychometrics, Self Care, Vøllestad NK

Coping with interpersonal stress: role of big five traits

Seventy-one couples living in a stepfamily context reported interpersonal family stressors and related coping strategies daily for 1 week in a daily process study. The role of personality and of the stressful context in each of the spouse's coping…

Adolescent development in interpersonal and societal contexts

In this chapter we review theoretical and empirical advances in research on adolescent development in interpersonal and societal contexts. First, we identify several trends in current research, including the current emphasis on ecological models and…

The search for social safety and comfort in families raising children with complex chronic conditions

Social consequences of raising children who were medically fragile and developmentally delayed (MF/DD) were explored in an ethnographic study of 20 families with school-age children. The overarching theme was the families' search for safety and…

Sibling bereavement and continuing bonds.

Historically, from a Freudian and medical model perspective, emotional disengagement from the deceased was seen as essential to the successful adaptation of bereavement. A major shift in the bereavement literature has occurred and it is now generally…

At the crossroads: making the transition to hospice

OBJECTIVE: Previous studies reveal that many terminally ill patients never receive hospice care. Among those who do receive hospice, many enroll very close to the time of death. Nationally, between 1992 and 1998, the median length of stay at hospice…

Mothers' experience of social support following the death of a child

1. This study aimed at analysing the grief and coping of mothers whose child had died under the age of 7 years. The paper describes the social support received as experienced by mothers. 2. Data were collected using a survey (n=91) and interviews…

Issues in end-of-life care: patient, caregiver, and clinician perceptions

CONTEXT: Review of published research indicates the need to better incorporate patient and caregiver perceptions when providing end-of-life (EOL) care. Although considerable research regarding patient and caregiver experience of EOL has been done,…

Human suffering: the need for relationship-based research in pediatric end-of-life care

Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must…

Facilitating children's grief

A program of education and support is essential for children and their parent or adult caregivers when the children have experienced the death of a significant person. Children need guidance on how to deal with their profound feelings of grief. The…

Tags: 2003, Adolescent, Adult, Backlog, Child, Child Psychology, Communication, Counseling, Death, Grief, Humans, Interpersonal Relations, Journal Article, Riely M, School Nursing, Self-Help Groups, sibling bereavement, The Journal Of School Nursing: The Official Publication Of The National Association Of School Nurses

Positive change processes and post-traumatic growth in people who have experienced childhood abuse: understanding vehicles of change

Post-traumatic growth is an emerging area of research concerned with the positive psychological changes that can follow the experience of traumatic events. The aim of this study is to explore themes of post-traumatic growth within personal experience…

Elderly psychiatric patient status and caregiver perceptions as predictors of caregiver burden

Self-concepts, domain values, and self-esteem: relations and changes at early adolescence

We assessed how children's self-concepts of ability for mathematics, English, social, and physical skills activities, ratings of the importance of these activities, and general self-esteem change across the transition to junior high school. Three…

Effects of sibling death on teenagers

This study reports the effects of sibling death on 33 adolescents from white, middle- to upper-middle income families. Contact was made through mutual support groups for bereaved parents. A focused interview was used to gather data on bereavement…

Buffers for the bereaved: the impact of social factors on the emotional health of bereaving parents

Emotional health of bereaving parents (N = 62; control N = 56) were explored 5 years after the death of a child (age 0-12) in Israel. The Symptom Check List-90 was utilized as the primary measurement instrument. Comparisons to controls according to…

The posttraumatic growth inventory: measuring the positive legacy of trauma.

The development of the Posttraumatic Growth Inventory, an instrument for assessing positive outcomes reported by persons who have experienced traumatic events, is described. This 21-item scale includes factors of New Possibilities, Relating to…

Making sense of loss and benefiting from the experience: two construals of meaning

Theoretical models of the adjustment process following loss and trauma have emphasized the critical role that finding meaning plays. Yet evidence in support of these models is meager, and definitions of meaning have been too broad to facilitate a…

Tags: 1998, Adult, Analysis of Variance, Backlog, Cognition, Davis CG, Female, Grief, Humans, Interpersonal Relations, Journal Article, Journal Of Personality And Social Psychology, Larson J, Life Change Events, Male, Middle Aged, Nolen-Hoeksema S, Social Adjustment, Spirituality

Support as a crucial predictor of good compliance of adolescents with a chronic disease

The purpose of this study was to describe the factors that predict compliance among adolescents with a chronic illness. The data were collected by questionnaires from adolescents with asthma, epilepsy, juvenile rheumatoid arthritis (JRA) and…

The interactional context of problem-, emotion-, and relationship-focused coping: the role of the big five personality factors

This study examined the role that personality and situational factors play in three forms of coping responses: problem-, emotion- and relationship-focused. Coping responses were strongly associated with whether the situation involved a primarily…

Tags: 1996, Adaptation, Backlog, Defense Mechanisms, DeLongis A, Emotions, Empathy, Humans, Individuality, Interpersonal Relations, Journal Article, Journal Of Personality, Non-U.S. Gov't, O'Brien TB, Personality, Problem Solving, Psychological, Research Support, Social Environment

Things that help and hinder adolescent sibling bereavement

A taxonomy of the things that help and hinder adolescents' sibling bereavement was developed from the responses of 140 bereaved adolescents to the questions What helped you cope with your sibling's death? and What made it harder to cope with your…

Sources of stress for family caregivers of institutionalized dementia patients

Although many caregivers place their relative in a nursing home in an attempt to reduce their own burden, caregiving stress often continues after institutionalization. This research examined sources of stress for 66 caregivers who cared for their…

Peer relationships of bereaved siblings and comparison classmates after a child's death from cancer

OBJECTIVES: To compare peer relationships among bereaved siblings and matched classmates, and to examine gender, grade level, and time since death as moderators. METHODS: Families were recruited from cancer registries at four hospitals 3-12 months…

Human suffering: the need for relationship-based research in pediatric end-of-life care

Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must…

Parents' Perception of Their Relationship Following the Loss of a Child.

It is known that if one partner wants to talk after the loss of a child, while the other does not, the less satisfied they are with the relationship. The aim of this study was to increase our understanding of parental relationships following the loss…

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