Personalized and yet standardized: An informed approach to the integration of bereavement care in pediatric oncology
Lori Wiener1, Abby R Rosenberg2, Wendy G Lichtenthal3
1National Institutes of Health,National Cancer Institute,Center for Cancer Research,Bethesda,MD.
Insights
Bereavement care after a child's death is inconsistent in pediatric oncology centers. Many centers lack policies for assessing needs, leading to variable support for grieving parents.
Area of Science:
- Pediatric Oncology
- Palliative Care
- Bereavement Support
Background:
- Childhood cancer deaths lead to parental distress and psychosocial challenges.
- Standards recommend healthcare contact with bereaved parents for risk identification and support.
- Implementation of these standards in practice is not well understood.
Purpose of the Study:
- Assess the implementation of psychosocial standards of care for bereaved parents in pediatric settings.
- Identify barriers to implementing routine bereavement support.
- Evaluate current bereavement care practices and identify areas for improvement.
Main Methods:
- A survey was distributed to pediatric palliative care and oncology professionals via listservs.
- The survey collected data on program characteristics, challenges, and barriers to implementing care standards.
- One hundred participants, primarily palliative care physicians and oncologists, responded.
Main Results:
- 59% of centers report often or always delivering bereavement care, but two-thirds lack policies for routine needs assessment.
- Bereavement services show inconsistency in type and duration; 28% have no systematic contact with bereaved families.
- Few centers (5%) utilize bereavement screening tools, and in 30% of contacts, the healthcare provider is unknown to the family.
Conclusions:
- Significant variability in bereavement care highlights the need for standardized, policy-driven approaches.
- Lack of routine assessment and inconsistent support indicate opportunities for enhancing psychosocial care for grieving families.
- Improving bereavement care requires addressing systemic barriers and promoting consistent practices in pediatric oncology settings.
Objective:
The death of a child has been associated with adverse parental outcomes, including a heightened risk for psychological distress, poor physical health, loss of employment income, and diminished psychosocial well-being. Psychosocial standards of care for centers serving pediatric cancer patients recommend maintaining at least one meaningful contact between the healthcare team and bereaved parents to identify families at risk for negative psychosocial sequelae and to provide resources for bereavement support. This study assessed how this standard is being implemented in current healthcare and palliative care practices, as well as barriers to its implementation.
Method:
Experts in the field of pediatric palliative care and oncology created a survey that was posted with review and permission on four listservs. The survey inquired about pediatric palliative and bereavement program characteristics, as well as challenges and barriers to implementation of the published standards of care.ResultThe majority of participants (N = 100) self-reported as palliative care physicians (51%), followed by oncologists (19%). Although 59% of staff reported that their center often or always deliver bereavement care after a child's death, approximately two-thirds reported having no policy for the oncology team to routinely assess bereavement needs. Inconsistent types of bereavement services and varying duration of care was common. Twenty-eight percent of participants indicated that their center has no systematic contact with bereaved families after the child's death. Among centers where contacts are made, the person who calls the bereaved parent is unknown to the family in 30% of cases. Few centers (5%) use a bereavement screening or assessment tool.Significance of resultsLack of routine assessment of bereavement needs, inconsistent duration of bereavement care, and tremendous variability in bereavement services suggest more work is needed to promote standardized, policy-driven bereavement care. The data shed light on multiple areas and opportunities for improvement.
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