“Suffering in Silence”: Caregiver and medical team experiences on psychosocial screening among pediatric patients with hematologic malignancies Free

Background Children diagnosed with hematologic malignancies face physical and psychosocial stressors impacting the entire family. Treatment often involves prolonged intensive therapies, creating a risk for financial hardship for families, as well as depression, anxiety, and post-traumatic stress. Psychosocial needs during treatment may be exacerbated by pre-existing unmet health-related social needs. While routine and systematic psychosocial screening is recommended as a standard of care in pediatric oncology, its implementation across clinical settings varies. To inform process improvement in our psychosocial screening practices, we explored caregiver and clinical staff perspectives on current practices, including barriers and facilitators of screening for and addressing psychosocial needs.

Methods This was a qualitative study at a single institution with a medium-sized pediatric hematology and oncology clinic. Eligible participants included 1) English-speaking caregivers (≥18 years) of pediatric patients with hematologic malignancies and 2) pediatric oncology healthcare professionals and clinical staff. Temporary staff and caregivers of patients without a confirmed diagnosis were excluded. In-person or telephone semi-structured interviews were completed between May and July 2025, audio-recorded, and transcribed verbatim. Directed content analysis was used for transcripts with two study team members independently coding each transcript. The interview guide and initial codebook were informed by existing literature on psychosocial screening. Additional codes were developed inductively to identify recurring themes related to current screening processes, barriers, facilitators, and improvement opportunities. Interviews were conducted until thematic saturation was reached.

Results A total of 18 participants completed interviews including 9 caregivers of children with hematologic malignancies and 9 clinical staff (clinicians, social workers, nurses, front desk and triage staff). Most caregivers self-identified as female (n=7; 78%) and White (n=7; 78%). Reported caregiver household incomes varied: <$40,000 annually (n=3); $40,000-79,000 (n=3); >$80,000 (n=3).

Key perceived barriers to screening included: (1) lack of a longitudinal, standardized screening protocol, and (2) hesitancy around help-seeking. Without standardized reassessments, participants noted that families that were reserved may go unnoticed. One clinical staff member stated, “The squeaky wheel gets the grease,” with support often directed toward those who vocalize needs. Reluctance to ask for help was commonly attributed to pride and personal beliefs. One caregiver shared, “[pride has] been about the hardest part…even to ask for help with the bill.” Clinic staff echoed these observations and noted cultural preferences for self-reliance as an additional barrier.

Key facilitators of psychosocial screening included: (1) trust between families and staff, and (2) normalizing help-seeking. One caregiver described relationships with the care team as, “almost like an extended family situation,” highlighting emotional safety fostered by rapport. Participants emphasized framing help-seeking as expected, especially as families navigate their “world flipping upside down.“

Suggestions for improved screening processes included: (1) nonverbal tools to screen, and (2) expansion of mental health resources. A phenomenon of “suffering in silence” was described, in which both patients and caregivers withheld emotional or physical struggles, especially in each other's presence, to avoid further burden. Both caregivers and clinical staff noted that nonverbal tools can reduce disclosure burden and mitigate discomfort. Additionally, there was interest in expanded mental health services for patients, their siblings, and caregivers.

Conclusion This qualitative study highlights the multifaceted challenges in screening for and addressing psychosocial needs for families of children with hematologic malignancies. Insights from caregivers and clinical staff revealed opportunities to improve our current screening and support practices. Although our sample size was limited, we achieved thematic saturation. The results from this study have informed a quality improvement initiative to standardize our psychosocial screening processes. Incorporating perspectives of relevant parties is essential to improve psychosocial outcomes for families affected by childhood cancer.