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…

Parents' descriptions of labouring with an antepartum fetal death: Findings from the Birthing in Grief study

Abstract Background: Evidence to guide intrapartum care when an unborn baby has died is limited. Aims: To explore parents' experiences of care during labour of an antepartum stillbirth. Materials and methods: Semi-structured interviews with 18…

Experiences of pregnancy loss in Israeli first-time expecting fathers: A qualitative study

Abstract The aim of this study was to explore the experiences of pregnancy loss in first-time expecting fathers. Participants were 14 Jewish Israeli men who experienced pregnancy loss that occurred at least 3 months before their participation and who…

Professional bereavement photography for perinatal loss: A mixed-methods study

Abstract This study addresses research gaps regarding the impact of professional bereavement photography for perinatal loss. Utilizing a mixed-methods research design, 504 parents completed an online survey measuring their attitudes toward…

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…

Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families' and professionals' experiences

Background: Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning…

Telehealth Needs and Concerns of Stakeholders in Pediatric Palliative Home Care

Abstract Pediatric palliative home care (PPHC) provides care for children, adolescents, and young adults with life-limiting illnesses in their own homes. Home care often requires long travel times for the PPHC team, which is available to the families…

Max's legacy: an evaluation of the impacts of baby loss on staff and families

Background/Aims There is a paucity of literature on the impact of baby loss experiences on family and staff. This study aimed to explore existing support available to families and staff in a UK hospital for first trimester miscarriage, as well as…

Culturally and linguistically diverse men's experiences of support following perinatal death: A qualitative study

Aims and objectives: To explore culturally and linguistically diverse men's experiences of support after perinatal death, including barriers and facilitators to support and how healthcare providers, systems and policies can best support families.…

Bereaved mothers' experience of expressing and donating breast milk: An interpretative phenomenological study

Abstract Perinatal loss is a devastating event for any mother. What is often overlooked is a mothers continued ability to lactate following the death of her child. Donor breast milk is a commodity highly sought after given its value for feeding sick…

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…

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.…

A Qualitative Study Into Parents' Experiences With Loss During Their Child's End-Of-Life: Enduring and Intrusions of Grief

Background/aims: Parents of children receiving palliative care experience incremental losses and feelings of grief. During the end-of-life (EOL), the dynamics of being confronted with the growing threat of losing their child while fulfilling…

Tags: 2022, Boelen PA, Child, Child-parent relation, Clinical, De Jonge RR, Fahner JC, Grootenhuis MA, Houben M L, Kars MC, Kochen E M, Palliative Medicine, Semi-Structured Interview, September 2022 List, Social Support, Tataranno ML, Teunissen SC, thinking impairment/dm [Disease Management]

Challenges and Incentives for Integrating Person-Centred Outcome Measures Into Routine Paediatric Palliative Care: Health, Social Care and Commissioner Perspectives

Background/aims: To successfully integrate a newly developed measure into clinical practice, the challenges and incentives for implementation must be understood, and these are specific to each measure. Previous research has focused on…

The Impact of COVID-19 on Palliative Care for Children Within the UK

Background/aims: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) represent a group with complex care needs that are met by multiple services and thus may be subject to particular vulnerabilities.

Nurses' Perceptions of the Palliative Care Needs of Neonates With Multiple Congenital Anomalies

This study was conducted to determine neonatal intensive care unit (NICU) nurses' opinions about the palliative care needs of neonates with multiple congenital anomalies. The study sample consisted of the 20 nurses who agreed to participate in the…

Changes in Siblings Over Time After the Death of a Brother or Sister From Cancer

Background: Limited research has examined the impact of a child's death from cancer on siblings. Even less is known about how these siblings change over time. Objective: This study compared changes in siblings 1 (T1) and 2 (T2) years after the death…

The Photographs of Meaning Program for Pediatric Palliative Caregivers: Feasibility of a Novel Meaning-Making Intervention

Background: Research indicates that informal caregiving can have intense physical and mental impact on the individual. Relative to caregivers of adults, pediatric palliative caregivers appear less in literature despite experiencing greater mental,…

Tags: 2019, Action Research, Adaptation, Adult, American Journal of Hospice & Palliative Medicine, August 2019 List, Beaupin L K, Breier J M, Byrwa D J, Caregiver, Caregiver Support, Caregivers -- Psychosocial Factors, Coefficient Alpha, Criterion-Related Validity, Data Analysis Software, Depner R M, Descriptive Statistics, Discriminant Validity, Female, Grant P C, Health Facilities, Human, Internal Consistency, Levy K, Life Purpose, Married Women, meaning-centered psychotherapy, Middle Age, Mothers, Multimethod Studies, Narratives, New York, Pailler M E, Paired T-Tests, Palliative Care -- Psychosocial Factors, Pediatric, Pediatric Care, pediatric caregiver, Pediatric Palliative Care, Personal Satisfaction, Photography, photovoice, Pilot Studies, Pretest-Posttest Design, Program Development, Program Evaluation, Program Implementation, Psychological, Psychotherapy -- Methods, Questionnaires, Reliability, Research Subject Recruitment, Semi-Structured Interview, social media, surveys, Tenzek K E, Whites

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

A qualitative study of health care professionals’ views and experiences of paediatric advance care planning

Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health…

Use of Facebook in the maternal grief process: An exploratory qualitative study

This study seeks to explore the potential implications of Facebook use in the process of maternal grief. The participants were 11 women who had lost their children due to accidents or prolonged illness. Semistructured interviews were conducted and…

Tags: 2018, April 2018 List, Death studies, Exploratory Research, Francisco R, Grief, Human, Maternal Attitudes, Perluxo D, psychosocial, Qualitative Studies, Research Subjects, Semi-Structured Interview, social media, Social Networks, Support, Thematic Analysis, utilization, Women

Continuing Bonds with the Living: Bereaved Parents’ Narratives of their Emotional Relationship with their Children

Abstract
The death of a child can be seen as one of the most devastating experiences for parents which can result in a unique and enduring grief. Parents with surviving children face the task of navigating their own grief while continuing to parent.…

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