Journal
PALLIATIVE & SUPPORTIVE CARE
Volume 16, Issue 3, Pages 367-370Publisher
CAMBRIDGE UNIV PRESS
DOI: 10.1017/S1478951517001018
Keywords
Bone marrow transplantation; Psychosocial support; Caregivers; Family
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Funding
- NCI NIH HHS [P30 CA008748] Funding Source: Medline
- NIMH NIH HHS [K23 MH093689] Funding Source: Medline
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Objective:Pediatric bone marrow transplants represent a medically stressful, potentially traumatic experience for children and caregivers, and psychological support for parental caregivers is paramount to their long-term well-being. However, many medical centers do not have protocols in place to sustain caregiver well-being during these distressing experiences. Method:We report on a case of a 10-month-old infant with Wiskott Aldrich Syndrome who was hospitalized for bone marrow transplantation. Result:We describe the significant burden that fell upon caregivers during and after a bone marrow transplantation. Significance of results:This case helped guide our suggestions to improve care for caregivers. Several logistical hurdles could be overcome to alleviate some of these burdens. We suggest that a child psychologist or psychiatrist should be on patient care teams and be attentive to parental stress, impairments, or impediments to self-care, and signs of emergency of mental illness in this setting of medical trauma. Additionally, promotion of sleep hygiene and linkage to support systems can maximize resiliency. Finally, we believe that hospital administrators should partner with clinicians to facilitate routine support during highly stressful transitions of care.
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