Browse Items · Pediatric Palliative Care Library

Parental Perceptions of the Impact of a Child’s Complex Chronic Condition: A Validation Study of the Impact on Family Scale

The diagnosis of a child’s complex chronic illness may impact family relationships and cohesion. The Impact on Family Scale (IFS) is an instrument used to assess the parental perception of the effects of children’s chronic illness on family life.…

Tags: 2024, Adolescent, Adult, Alves SP, Article, August List 2024, Braz AC, Cerebral Palsy, Child, Child Health, Childhood Disease, Chronic Disease, cohesion, confirmatory factor analysis, construct validity, Disease, Educational Status, Emotional Stress, Family Life, family relation, Family Relations, Female, Fontaine AM, Graça L, Human, Humans, impact on family, Impact on Family Scale, International Journal of Environmental Research and Public Health, life satisfaction, Likert scale, Male, Middle Aged, Parent, parental care, Parents, pediatric complex chronic illness, Perception, Personal Satisfaction, Portugal, Psychology, psychometry, Questionnaire, Reproducibility, Reproducibility of Results, Satisfaction, satisfaction with life, scoring system, social cohesion, sociodemographics, Surveys And Questionnaires, test retest reliability, validation study

Health anxiety by proxy - through the eyes of the parents

Abstract Health anxiety by proxy is a newly described phenomenon where parents worry excessively that their child suffers from a serious illness. In a former study, six parents with distressing worries about their child's health were interviewed to…

Sleep quality moderates the association between family bereavement and heart rate variability

Two separate bodies of literature point to the link between family bereavement and cardiovascular health and between sleep quality and cardiovascular outcomes. However, less is known about the joint influence of family bereavement and sleep quality…

Advice from children and adolescents on final conversations with dying loved ones

To understand more about final conversations (communication between loved ones from the point of terminal diagnosis until death), 49 children/adolescents provided final conversation advice for other youth and for the dying person. Advice for fellow…

Tags: 2014, Adolescent, Backlog, Child, Death, Death studies, Family Relations, Female, Generous MA, Humans, Journal Article, Keeley MP, Male

Referring a patient and family to high-quality palliative care at the close of life: "We met a new personality... with this level of compassion and empathy"

Palliative care services are increasingly available to primary care physicians for both expert consultations and services to seriously ill patients. The United States now has more than 1400 hospital-based palliative care teams and more than 4700…

Tags: 2009, Backlog, Connor SR, Empathy, Family Relations, Hospices, Humans, Journal Article, Journal Of The American Medical Association, Male, Middle Aged, Neoplasms, Palliative Care/standards, Patient Care Team, Primary Health Care, Quality Of Health Care, Referral And Consultation, Social Support, Teno JM

Family function in families of children with Duchenne muscular dystrophy

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)…

Bereaved Parents’ and Siblings’ Reports of Legacies Created by Children With Cancer

This qualitative study explored bereaved parents’ and siblings’ reports of legacies created by children with advanced cancer. Participants included 40 families of children who died from cancer, with 36 mothers, 27 fathers, and 40 siblings (ages 8-18…

Constructions of Mexican American family grief after the death of a child: an exploratory study

Using a collective case study ethnographic approach, nine individuals comprising three Mexican American families were interviewed about their family bereavement experiences after the death of a child. All families were Catholic, had surviving…

Tags: 2006, Attitude To Death/ethnology, Backlog, Bereavement, Case-Control Studies, Child, Cultural Diversity & Ethnic Minority Psychology, Doran G, Downing HN, Dreams, Family Relations, Family/psychology, Humans, Journal Article, Mexican Americans/psychology, Religion, SSHRC CURA

Brief report: psychosocial adjustment in adolescents with inflammatory bowel disease

BACKGROUND: Inflammatory bowel disease (IBD) is an ideal disease for investigating adolescent adjustment to chronic illness, given its embarrassing, socially limiting, appearance-changing symptoms and adolescent onset. OBJECTIVE: To compare…

Tags: 2006, Adaptation, Adolescent, Adolescent Transitions, Backlog, Case-Control Studies, Crandall WV, Family Relations, Female, Humans, Inflammatory Bowel Diseases/psychology, Journal Article, Journal of Pediatric Psychology, Mackner LM, Male, Psychological, Social Adjustment, United States

Problem of nonadherence in chronically ill adolescents: strategies for assessment and intervention

PURPOSE OF REVIEW: Nonadherence to medical treatment is a significant problem for adolescents with chronic illness, with significant morbidity and mortality. Yet efforts to assess and treat the problem have been limited. We reviewed the literature on…

Tags: 2005, Adolescent, Adolescent Behavior, Adolescent Transitions, Backlog, Chronic Disease/psychology/therapy, Current Opinion In Pediatrics, Family Relations, Humans, Intervention, Interventions, Journal Article, Patient Education as Topic, Risk Factors, Shuchman M, Smith BA, Treatment Refusal/psychology

Family focused grief therapy: a randomized, controlled trial in palliative care and bereavement

OBJECTIVE: The aim of family focused grief therapy is to reduce the morbid effects of grief among families at risk of poor psychosocial outcome. It commences during palliative care of terminally ill patients and continues into bereavement. The…

Building a new world: habits and practices of healing following the death of a child

The goal of this interpretive phenomenological study is to describe and understand significant habits and practices developed by families bereaved from the sudden and unexpected loss of their children. Data were primarily collected through the…

Physical and mental health of mothers caring for a child with Rett syndrome

OBJECTIVES: Our goal was to investigate the physical and mental health of mothers who care for a child with Rett syndrome. METHODS: We assessed maternal physical and mental health by using the SF-12 version 1 physical component summary and mental…

Conflict in the care of patients with prolonged stay in the ICU: types, sources, and predictors

OBJECTIVE: To determine types, sources, and predictors of conflicts among patients with prolonged stay in the ICU. DESIGN AND SETTING: We prospectively identified conflicts by interviewing treating physicians and nurses at two stages during the…

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…

Non-compliance in adolescents with chronic lung disease: causative factors and practical approach

Compliance with medical therapies may be considered a challenge in many age groups but especially so in adolescence. The adolescent patient with chronic lung disease may struggle to progress smoothly through the phases of adolescence because of fears…

Tags: 2001, Adolescent, Adolescent Behavior/psychology, Asthma/therapy, Backlog, Chronic Disease, Cystic Fibrosis/therapy, Family Relations, Female, Fitzgerald D, Humans, Journal Article, Lung Diseases/therapy, Paediatric Respiratory Reviews, Respiratory Insufficiency/therapy, Treatment Refusal/psychology

Adaptational process of parents of pediatric oncology patients

This study, based on grounded theory, explores the adaptational process of parents of pediatric oncology patients. Thirty-two Taiwanese parents (26 mothers and 6 fathers) were interviewed. Data were collected through individual in-depth and focus…

The positive impact of children with an intellectual disability on the family.

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…

Tags: <25-70+ yr old parents, 1998, Backlog, Besser H, Disorders, Family Life, Family Relations, Female, Human, Journal Article, Journal Of Intellectual & Developmental Disability, Longitudinal Studies, Male, Parents, positive impacts of children with disabilities, Positivism, Stainton Tim

Grandma's hands: parental perceptions of the importance of grandparents as secondary caregivers in families of children with disabilities

This study examines parental perceptions of the importance of grandparents as providers of routine care to children with disabilities and the impact of such assistance on parental well-being. Data are drawn from a survey and follow-up interactive…

Unending work and care: managing chronic illness at home

Tags: 1988, Book/Book Section, Chronic Disease, Corbin JM, Family Relations, home care services, Psychology, Strauss A

Family construction of meaning

Examines interactive meaning making in families in response to the death of one of their members. Drawing on her extensive grounded theory analysis of scores of family conversations, the author detects and distills patterns of meaning making that…

Tags: 2001, Book/Book Section, Death and Dying, Emotional Adjustment, Family Members, Family Relations, Grief, Meaning, Meaning Reconstruction & The Experience Of Loss, Nadeau JW, patterns in family construction of meaning in death of member, SSHRC CURA

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