Browse Items · Pediatric Palliative Care Library

Informing social work practice through research with parent caregivers of a child with a life-limiting illness

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…

Cultural Influences in Pediatric Cancer from Diagnosis to Cure/End of Life

OBJECTIVE: To review the literature on cultural factors influencing clinical care and family management of pediatric cancer. METHODS: A literature review including 72 articles related to cultural issues in pediatric cancer was conducted. Information…

End-Of-Life Research as a Priority for Pediatric Oncology

Approximately 2,200 children and adolescents die a cancer-related death each year in the United States; of these, almost 90% will die while experiencing 2 to 8 troubling symptoms. With improved symptom control and end-of-life care, these patients…

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…

Stress, appraisal, and coping

Tags: 1984, Adaptation, Book/Book Section, Folkman S, Lazarus RS, Psychological, Stress

Bereavement experiences and personal growth

Tags: 2001, Adaptation, Bereavement, Book/Book Section, Death, Grief, Handbook Of Bereavement Research: Consequences, Coping And Care., Moos R, Psychological, Schaefer J

Changes in siblings after the death of a child from cancer.

IMPLICATIONS FOR PRACTICE: Our findings offer guidance to improve aftercare for bereaved siblings and their families. Additional research is needed to further delineate the needs of bereaved siblings and to develop strategies to promote adaptation to…

Indicators of family resilience after the death of a child

The aim of this study was to identify and describe resilience qualities in families after losing a child. Questionnaires, including an open-ended question, were utilized to collect data independently from the parents and siblings of the deceased in…

Parental assessment of pain coping in individuals with intellectual and developmental disabilities

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…

Communication with parents of children with cancer

The purpose of this study was to assess the receptiveness of parents to information given about their child's life threatening illness. Three months after the child's diagnosis, an independent interviewer, using a structured questionnaire,…

Risk factors in the adjustment of siblings of children with cancer

The study investigated the psychological adjustment of 99 siblings of children with cancer. At 6 months post-diagnosis, 24 siblings had scores in the borderline or clinical range on parent- and teacher-completed measures of behavioural adjustment and…

Gender differences in parenting a child with cancer

This study of 124 parents of children diagnosed with cancer investigates parents' perceptions of their role in the illness situation. The study found that mothers and fathers differ in their experience of and response to parenting a child with…

Death of adolescents: parental grief and coping strategies

The death of an adolescent is a particularly complex issue. The process of grieving and coping can be complicated by the tension that may have existed in the parent/child relationship because of the conflict in terms of personal ideology at this…

Tags: 2001, Adaptation, Adolescent, Adult, Attitude To Death, Backlog, British Journal Of Nursing, Child, Davies AM, Grief, Humans, Journal Article, Parent caregivers, Parent-child Relations, Parents/psychology, Psychological

Not ready for hospice: characteristics of patients in a pre-hospice program

CONTEXT: There are many patients with terminal illness for whom hospice care would be appropriate, but they either never enroll or enroll very late. In a pre-hospice program designed to help patients make the transition into hospice, we observed that…

Choices and control: parental experiences in pediatric terminal home care

During the past decade, palliative care at home has become an alternative option to hospital care for terminally ill children. This study describes the experience of caring for a dying child at home from a parent's perspective. A qualitative research…

A theory of healing in the aftermath of youth suicide. Implications for holistic nursing practice

The purpose of this family-focused, grounded-theory study was to develop a substantive theory that explains how individual family members heal in the aftermath of youth suicide. Individual healing following youth suicide is conceptualized as a…

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…

Stress, social support, and sense of coherence

In the Salutogenic Model, Aaron Antonovsky suggested that a sense of coherence (SOC) is the key determinant in the maintenance of health. He theorized that individuals with a strong SOC have the ability to (a) define life events as less stressful…

WeeFIM: Normative sample of an instrument for tracking functional independence in children.

A cross-sectional community sample of 417 children, ages 6 months to 8 years without developmental delays or in developmental programs, was seen. The Functional Independence Measure for Children (WeeFIM) was used to assess independence in self-care,…

The Functional Independence Measure for Children (WeeFIM). Conceptual basis and pilot use in children with developmental disabilities.

Few tools are available to pediatricians for tracking and monitoring disability status in children. We describe the conceptual basis and pilot use of the Functional Independence Measure for Children (WeeFIM). Our pilot use of this instrument in…

Family bereavement and cultural diversity: a social developmental perspective

This article offers an integrative, interdisciplinary model of bereavement as a family developmental process that unfolds in cultural context. A critique of cultural assumptions highlights the culture-bound nature of prevailing North American…

Tags: 1996, Acculturation, Adaptation, Attitude To Death/ethnology, Backlog, Bereavement, Cultural Diversity, Family Process, Family Therapy, Family/ethnology/psychology, Humans, Journal Article, Models, North America, Psychological, Shapiro ER, SSHRC CURA

Cornerstone care for families of children with life-threatening illness.

Forty-five families of children with life-threatening illnesses for up to 10 years were interviewed. The children required many medical disciplines, as well as social, educational and material provisions, and parents described the complex and often…

Effects of sudden infant death on bereaved siblings: a comparative study

This study investigated behavioural problems (as rated by mothers) in 38 children who had been suddenly bereaved of an infant sibling between 3 and 27 months previously. These children were compared with 40 children matched on age, gender, family…

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

Siblings of a child with cancer

A total of 21 healthy siblings were interviewed about their experiences when a brother or sister is diagnosed with cancer. Information about the illness, opinions about who should inform siblings, social support, specific worries and worst memories…

Experiencing transitions: an emerging middle-range theory

Changes in health and illness of individuals create a process of transition, and clients in transition tend to be more vulnerable to risks that may in turn affect their health. Uncovering these risks may be enhanced by understanding the transition…

Communication between physician, patient, and family in the pediatric intensive care unit

Bereavement care in the critical care setting

Bereavement care in critical care units should involve providing support and counseling for the family members prior to death, immediately after the death has occurred, and at least some follow-up in the future months. These are crucial moments: Once…

Tags: 1997, Adaptation, Aftercare, Backlog, Bereavement, Clinical Competence, Critical Care Nursing Quarterly, Critical Care/psychology, Cultural Diversity, Family/psychology, Humans, Journal Article, Professional-family Relations, Psychological, Social Support, SSHRC CURA, Warren NA

Better for it: how people benefit from adversity

Recently, researchers in several different fields have discovered that people who have experienced seriously adverse events frequently report that they were positively changed by the experience. Respondents in these studies typically have reported a…

Tags: 1999, Adaptation, Backlog, Humans, Internal-External Control, Journal Article, Life Change Events, McMillen JC, P.H.S., Psychiatric, Psychological, Research Support, Social Work, Survivors/psychology, U.S. Gov't

Predictors of distress in parents of children with cancer: a prospective study.

OBJECTIVE: To investigate levels of psychological distress in parents of children with cancer and relationships between distress and measures of illness variables, appraisal, psychosocial resources and coping strategies. METHODS: Questionnaires were…

The long-term effects of later life spousal and parental bereavement on personal functioning

Using data from Americans' Changing Lives: Wave 1, 1986, this study examined the long-term effects on the personal functioning of older women and men following the death of an adult child or a spouse. Guided by Weiss's (1993) theoretical framework,…

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…

Spiritual aspects of loss among partners of men with AIDS: postbereavement follow-up

This article is a follow-up study of bereaved caregiving male partners of men with AIDS (T.A. Richards & S. Folkman, 1997). The earlier study examined spiritual beliefs, experiences, and practices reported in interviews with 125 caregivers conducted…

Protective and damaging effects of stress mediators

1998

Tags: 1998, Adaptation, Backlog, Biomarkers of Pain, Brain/physiology, Cardiovascular Physiology, Homeostasis, Humans, Immune System/physiology, Journal Article, McEwen BS, Physiological, Stress/physiopathology, The New England Journal Of Medicine

Hunger disease

This paper examines three aspects of hunger disease: the effect of initial fat stores on macronutrient fuel selection during total starvation (no energy) and how it influences survival; the effects of different rates of weight loss on tissue and body…

A community survey of children with severe intellectual disability and their families: psychological adjustment, carer distress and the effect of respite care

The present paper describes a cross-sectional study of the psychosocial adjustment of 143 children with severe disability and their families identified from a regional case register for children with special needs. Thirty-eight per cent of the…

Patterns of children's coping with life stress: implications for clinicians

In a study of children's patterns of coping with daily stressors, boys and girls 9-17 years old were asked to complete a coping checklist in response to one of four types of stressors--school, parents/family, siblings, or peer/interpersonal. Patterns…

Tags: 2000, Adaptation, Adolescent, Backlog, Child, Danovsky M, Defense Mechanisms, Donaldson D, Female, Humans, Journal Article, Male, Personality Inventory, Prinstein MJ, Psychological, Psychological/psychology, Spirito A, Stress, The American Journal Of Orthopsychiatry

Perceptions of control and long-term recovery from rape

The relationship between perceptions of control and symptoms of both long-term depression and post-traumatic stress was examined. Enduring beliefs of personal competence and control were found to be associated with lower rates of depression and…

Predictors of burden in spouse caregivers of individuals with Alzheimer's disease

This study used the following model of distress: Distress = [Exposure to Stress + Vulnerability]/[Psychological and Social Resources]. The constructs in the model were operationalized as (a) distress in response to caregiver experiences (burden); (b)…

Vulnerability and resilience to combat exposure: can stress have lifelong effects?

The purpose of this study was to examine whether appraisals of desirable and undesirable effects of military service mediated the effect of combat stress on posttraumatic stress disorder (PTSD) symptoms in later life in 1,287 male veterans, aged…

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