Browse Items · Pediatric Palliative Care Library

Palliative Care Family Support in Neonatology

In this chapter we will describe the evidence for palliative care family support beginning in the prenatal period and extending to acute and chronic neonatal intensive care unit (NICU) care and finally to bereavement. Neonatal providers have the…

Ameliorating Caregiver Burden in the Pediatric Palliative Population Utilizing a Psychophysiological Intervention

Background: Providing long-term care for a family member can be a source of severe stress for the untrained caregiver, and is known to cause depression, poor overall health, and lower quality of life for the caregiver. This burden may lead to poorer…

Parent moral distress in serious pediatric illness: A dimensional analysis

BACKGROUND: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear. OBJECTIVE: The objective of this dimensional analysis was to…

Tags: 2020, 2022 Special Edition 2 - Parent Perspectives, Child, Critical Illness, Ethics of Care, Female, Humans, Male, Mooney-Doyle K, Moral Distress, Neonatal Care, Nursing Ethics, Palliative Care, Parents, pediatric practice, Stress, Ulrich CM

Identifying as a Good Parent: Considering the Communication Theory of Identity for Parents of Children Receiving Palliative Care

Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in…

Vulnerability of Inexperience: A Qualitative Exploration of Physician Grief and Coping after Impactful Pediatric Patient Deaths

Background: Caring for dying patients can result in burnout, stress, and emotional trauma for some physicians,1,2 particularly among trainees. Research is lacking that focuses on the emotional impact and coping techniques utilized by novice and…

Tags: 2022, Arnold RM, Burnout, Communication, Critical Care, End-of-life Care, Hinds PS, Journal of Palliative Medicine, May 2022 List, Professional, Psychological, Qualitative Research, Soghier L, Stress, Tompkins R, Wolfe AHJ

Acute and Posttraumatic Stress in Family Members of Children With a Prolonged Stay in a PICU: Secondary Analysis of a Randomized Trial

OBJECTIVES: To identify the prevalence of screening criteria for acute and posttraumatic stress disorders (PTSDs) and stress symptoms among family members of children in the PICU for more than 8 days and examine risk factors for stress symptoms.…

Tags: 2022, Acute stress, Children, Curtis JR, Doorenbos AZ, Ercin-Swearinger H, Family, Lindhorst T, May 2022 List, Pediatric Critical Care Medicine, Pediatric Intensive Care Unit, Posttraumatic stress, Randomized Trial, Secondary Analysis, Starks H, Stress

Vulnerability of Inexperience: A Qualitative Exploration of Physician Grief and Coping after Impactful Pediatric Patient Deaths

Background: Caring for dying patients can result in burnout, stress, and emotional trauma for some physicians,1,2 particularly among trainees. Research is lacking that focuses on the emotional impact and coping techniques utilized by novice and…

Tags: 2022, April 2022 List, Arnold RM, Burnout, Communication, Critical Care, End-of-life Care, Hinds PS, Journal of Palliative Medicine, Professional, Psychological, Qualitative Research, Soghier L, Stress, Tompkins R, Wolfe AHJ

Describing the Psychosocial Profile and Unmet Support Needs of Parents Caring for a Child with a Life-Limiting Condition: A Cross-Sectional Study of Caregiver-Reported Outcomes

BACKGROUND: There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and…

Tags: 2020, 2022 Special Edition 1 - Parent Perspectives, Burchell J, Caregiver, Collins A, Paediatrics, Palliative Care, Palliative Medicine, Psychological, Quality Of Life, Remedios C, Stress, Terminally Ill, Thomas K

Pediatric oncology nursing research in low- and middle-income countries

Cancer and other non-communicable diseases are a growing public health issue now that infectious disease control (e.g., HIV/AIDS, malaria, and tuberculosis) has made great strides across low- and middle-income countries (L&MIC). The large majority…

Tags: 2020, Afungchwi G M, Alqudimat M R, alternative medicine, Burkitt lymphoma, cancer incidence, Cancer Survival, Caregiver, Caregiver Burden, caregiver burnout, Challinor J M, Cytotoxicity, Day S W, Developing World 2020 List, economic status, Fatigue, geographic distribution, gross national income, Health Care Personnel, high income country, Human, immune status, Impact of Events Scale, Infant Mortality, Kaposi sarcoma, lifestyle, low income country, malnutrition, Methodology, middle income country, nurse training, Nursing Care, Nursing Practice, nursing science, Nutrition, Pain, Palliative Therapy, Pediatric Oncology, pediatric oncology nursing, PostTraumatic Stress Disorder, Priority Journal, Quality Of Life, risk factor, Sepsis, Southeast Asian, Southern Europe, Stress, traditional medicine, treatment response

Perceptions on good death among parents of pediatric patients with hematology-oncology disease in advance

Background: It is difficult to perceive the preparation of a good death for children because of its social and cultural issues. Among the children with serious diseases, they can be alienated and the whole processes are done by the decision of the…

Providing cost-effective and coordinated care for children with medical complexity

Introduction: Many paediatric hospitals are treating increasing numbers of children with medical complexity (CMC), diagnosed with chronic life-limiting illnesses and requiring life-sustaining home medical technology. These medically fragile children…

Measuring the Effects of an Animal-Assisted Intervention for Pediatric Oncology Patients and Their Parents: A Multisite Randomized Controlled Trial

OBJECTIVE: This multicenter, parallel-group, randomized trial examined the effects of an animal-assisted intervention on the stress, anxiety, and health-related quality of life for children diagnosed with cancer and their parents. METHOD: Newly…

Always a burden? Healthcare providers' perspectives on moral distress

BACKGROUND: Current conceptualisations of moral distress largely portray a negative phenomenon that leads to burnout, reduced job satisfaction and poor patient care. OBJECTIVE: To explore clinical experiences, perspectives and perceptions of moral…

Pediatric euthanasia in Belgium: disturbing developments

2014-05

Tags: 2014, Active, Backlog, Belgium, Caplan AL, Child, Chronic Disease, Euthanasia, Humans, JAMA, Journal Article, Palliative Care, Personal Autonomy, Psychological, Siegel AM, Sisti DA, Stress, Terminal Care

Supportive and palliative care of children with metabolic and neurological diseases

PURPOSE OF REVIEW: To review the role of pediatric palliative care (PPC) for children with metabolic and neurological diseases. RECENT FINDINGS: There is a growing body of literature in PPC, though it remains limited for children with metabolic and…

Developing a process to support perinatal nurses after a critical event

The work of perinatal nurses sometimes includes emergencies involving death, or near death, which can leave health care providers with feelings of stress and grief. After experiencing a particularly stressful period, nurses at our organization…

Sharing the care: the key-working experiences of professionals and the parents of life-limited children

AIMS: To explore the lived experience of caring and care planning for a child with a life-limiting condition (LLC). METHOD: Using van Manen's conceptualisation of hermeneutic phenomenology, three focus groups were conducted with 21 paediatric…

Bereavement support used by mothers in Ireland following the death of their child from a life-limiting condition

BACKGROUND: Children's palliative care is a rapidly developing specialism internationally. Bereavement support is an integral component of children's palliative care but to date little research has investigated the bereavement support that mothers in…

Videoconferencing to reduce stress among hospitalized children

OBJECTIVES: Family-Link is a videoconferencing program that allows hospitalized children and their parents to virtually visit family members and friends using laptops, webcams, and a secure Wi-Fi connection. We evaluated the association of…

The Impact of a Wish: Caregiver Perceptions of the Benefits of Granted Wishes for Children with Life-Threatening Illnesses and their Families

Wish-granting organizations have provided wishes to families of children with serious illnesses for years, yet scant research has examined their benefits. This mixed-method investigation of 682 households explored the benefits of granted wishes to…

Tags: 2014, Backlog, Children's Health Care, family functioning, Journal Article, Psychological, Quality Of Life, Sarigiani P, Schilling ML, Stress

Suffering indicators in terminally ill children from the parental perspective

PURPOSE: Suffering is a complex multifaceted phenomenon, which has received limited attention in relation to children with terminal illness. As part of a wider study we interviewed parents of children with terminal illness to elicit their…

Exploring perceptions of psychological services in a children's hospice in the United Kingdom

BACKGROUND: The provision of emotional and psychological support for all family members who need it is an essential element of holistic palliative care. Within East Anglia's Children's Hospice, teams of professionally trained and experienced workers…

A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions

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…

Living in the in-between: families caring for a child with a progressive neurodegenerative illness

Medical advances in recent years have led to an increased life span for children with progressive, neurodegenerative illnesses. The purpose of this hermeneutic inquiry was to explore the experience of families caring for their child at home.…

A Review of Apps for Calming, Relaxation, and Mindfulness Interventions for Pediatric Palliative Care Patients

Patients and families increasingly use mobile apps as a relaxation and distraction intervention for children with complex, chronic medical conditions in the waiting room setting or during inpatient hospitalizations; and yet, there is limited data on…

Tags: 2018, Akers S, Beck J, Children, Children (Basel), March 2018 List, Meditation, mobile applications, multimedia, Palliative, relaxation, Stress, Technology, Walker N, Weaver M, Weekly T

Good-parent beliefs of parents of seriously ill children

IMPORTANCE: Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support. OBJECTIVE: To assess parents'…

Complementary therapies for children undergoing stem cell transplantation: report of a multisite trial

BACKGROUND: Children undergoing stem cell transplant (SCT) experience high levels of somatic distress and mood disturbance. This trial evaluated the efficacy of complementary therapies (massage, humor therapy, relaxation/imagery) for reducing…

Symptoms in the palliative phase of children with cancer

BACKGROUND: The aim of the study was to make a comprehensive inventory of the physical, psychological, and social symptoms of children with cancer and their parents during the palliative phase and the extent to which health professionals address…

Stress, coping, and hope

Hope is discussed in many literatures and from many perspectives. In this essay hope is discussed from the vantage of psychology and stress and coping theory. Hope and psychological stress share a number of formal properties: both are contextual,…

Tags: 2010, Adaptation, Attitude To Health, Backlog, Folkman S, Humans, Journal Article, Neoplasms/psychology, Psycho-Oncology, Psychological, Psychological/psychology, Stress, Uncertainty

Pediatric palliative care.

Palliative care has always been a part of the care of children. It includes any intervention that focuses on relieving suffering, slowing the progression of disease, and improving quality of life at any stage of disease. In addition, for even the…

Long-term effects of the death of a child on parents' adjustment in midlife

The death of a child is a traumatic event that can have long-term effects on the lives of parents. This study examined bereaved parents of deceased children (infancy to age 34) and comparison parents with similar backgrounds (n = 428 per group)…

Psychological distress in cancer patients assessed with an expert rating scale

The purpose of this study was to investigate psychosocial stress in a large sample of cancer patients using an expert rating scale. Specific aims were to analyse the relevance of setting variables (type of clinic, contact initiative, therapy) and…

Staff experiences with end-of-life care in the pediatric intensive care unit

The purposes of this study were to describe the experiences of pediatric intensive care unit (PICU) staff caring for a child who dies, and to determine whether responses included unprompted indications of moral distress as described in the…

Tags: 2008, Backlog, Dupree CY, Grief, Hospital/psychology, Humans, Intensive Care Units, Interviews as Topic/methods, Journal Article, Journal of Palliative Medicine, Lee KJ, Medical, Medical Staff, Pediatric, Professional-patient Relations, Psychological, Stress, Technology, Terminal Care/ethics/methods

Brief report: psychosocial functioning of fathers as primary caregivers of pediatric oncology patients

OBJECTIVE: To evaluate the psychosocial functioning of fathers as primary caregivers of pediatric oncology patients. METHODS: Fathers who identified themselves as the primary medical caregivers were given a packet of questionnaires, including the…

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)…

Can meditation slow rate of cellular aging? Cognitive stress, mindfulness, and telomeres

Understanding the malleable determinants of cellular aging is critical to understanding human longevity. Telomeres may provide a pathway for exploring this question. Telomeres are the protective caps at the ends of chromosomes. The length of…

Tags: 2009, Adaptation, Annals Of The New York Academy Of Sciences, Backlog, Blackburn E, Cell Aging/genetics, Cognition/physiology, Daubenmier J, Epel E, Folkman S, Humans, Journal Article, Meditation, Moskowitz JT, Psychological/physiology, Psychological/physiopathology, Stress, Telomere/genetics

Emotion regulation in patients with rheumatic diseases: validity and responsiveness of the Emotional Approach Coping Scale (EAC)

BACKGROUND: Chronic rheumatic diseases are painful conditions which are not entirely controllable and can place high emotional demands on individuals. Increasing evidence has shown that emotion regulation in terms of actively processing and…

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