Context: The death of a child from cancer is a devastating event, placing bereaved parents at risk for both physical and psychosocial morbidities. Despite growing awareness of these outcomes and increased hospital-based support, bereaved parents continue to express a desire for additional assistance.
Objectives: We examined parental perceptions of bereavement support from the clinical teams and institution and suggested modifications to hospital support strategies.
Methods: We explored the answers to four questions on the bereavement support provided from the care team and institutional mailings from a larger survey, querying parents of children who died from cancer 6 to 24 months prior to participation. Answers were Likert scale based with additional free-text responses.
Results: Forty-nine parents completed the survey (response rate 36%). The respondents were predominantly white (N = 43, 88%), female (N = 32, 65%), and non-Hispanic/Latino (N = 43, 88%). The mean length of time from child's death to completion was 13 months. Twenty-seven (55%) and 26 (53%) parents indicated that contact with care team and mailings, respectively, were at least a little helpful in their grief experience. In free-text responses, parents identified support outside the hospital (28 respondents), groups and events hosted by the hospital or hospice (8), contact with care team (3), and hospital mailings (1) as the most helpful. Findings support modifications to hospital support strategies.
Conclusions: Bereaved parents request additional supportive services. Using the parents' perspective and recommendations, we outline options to augment support and provide a variety of supportive resources for bereaved parents to access in their own time.
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http://dx.doi.org/10.1016/j.jpainsymman.2020.11.012 | DOI Listing |
Pediatrics
December 2024
Robert's Program on Sudden Unexpected Death in Pediatrics, Division of General Pediatrics, Boston Children's Hospital, Boston, Massachusetts.
Background And Objectives: A death scene investigation is required to determine sudden infant death syndrome, and a doll reenactment optimizes the information obtained. The aim of this study was to explore how acutely bereaved parents experience doll reenactments that are conducted after the sudden and unexpected deaths of their infants.
Methods: A mixed-methods design, including surveys and semi-structured interviews, was used in a cross-sectional, national study to explore the experiences of doll reenactment among 45 bereaved parents.
J Palliat Med
December 2024
Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, Pennsylvania, USA.
Hospital-based supports for families following the death of a child are rare. Virtual interventions may address key barriers to providing bereavement care, but little is known about their acceptability, feasibility, and efficacy. Our hospital's palliative care program offered a six-week closed virtual support group for bereaved parents five times between 2021 and 2024.
View Article and Find Full Text PDFJ Pain Symptom Manage
December 2024
Dana-Farber Cancer Institute, Boston, MA, USA; Harvard Medical School, Boston, MA, USA.
Context: Timely and transparent serious illness conversations (SIC) between family caregivers and patients facilitate high-quality end-of-life care and patients' and family caregivers' mental wellbeing, but frequently do not occur, happen too late, or are incomplete. While social relations and roles shape communication, few studies explore their influence on patient-caregiver SICs.
Objectives: Investigate how the parent-child relation and roles shape SICs between cancer patients and their adult-child caregivers (ACC), the largest caregiver population.
Eur J Midwifery
December 2024
Research Centre Care in Connection, Department of Nursing and Midwifery, Karel de Grote University of Applied Sciences and Arts, Antwerp, Belgium.
Introduction: Perinatal loss, encompassing stillbirth and neonatal death, can have profound physical and psychological consequences for parents. Effective communication by healthcare professionals during this sensitive period is critical. This study aimed to explore how bereaved parents and professionals experienced verbal and non-verbal communication during perinatal loss.
View Article and Find Full Text PDFDev Psychopathol
December 2024
Department of Psychology, Arizona State University, Tempe, AZ, USA.
This study reports on the description of children's distinct trajectories of intrusive grief, baseline predictors of grief trajectories, and the association of grief trajectories with mental health, substantive abuse and disordered grief six and fifteen years following baseline assessment. The study uses data on 244 parentally-bereaved children ages 8-16 at baseline. Four distinct trajectories were identified using Growth Mixture Modeling over four waves of assessment across 6 years.
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