Abstract
A pediatric brain tumor diagnosis impacts an entire family unit, from diagnosis through curative treatment, and into survivorship or bereavement. Paternal caregiver experience has been significantly underexplored in pediatric neuro-oncology research as compared to maternal experience. This case series study explores the paternal roles, responsibilities, strengths, challenges, personal growth, and support needs of fathers of children with brain tumors receiving new palliative care consultations. In the study setting, a neuro-oncology diagnosis results in an automatic referral to the palliative care team, and thus, a convenience sampling model was employed based on consecutive palliative care consults for new childhood brain tumor diagnoses. In this study, four fathers of pediatric brain tumor patients receiving palliative care consultations responded to eight open-ended questions. Individual, voice-recorded interviews were transcribed for semantic content qualitative analysis. Analysis followed Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. Participants completed quantitative surveys of their information preferences and support needs. Participants defined their father role as: being a team parent, an adaptable father, supporter, provider, a present father, and protector. Role conflict due to paternal responsibilities were recognized, such as the absence from the hospital to provide financial security for the family, and yet a desire to be physically present for the child. Fathers prioritized their knowledge needs about their child’s diagnosis, prognosis, and treatment above emotional needs. Fathers shared experiences of their personal growth through their child’s brain tumor diagnosis and advised on preferred support formats to include both verbal and written information. Understanding how paternal caregivers of children with cancer define their roles and goals has potential to improve the care and communication delivered to families of pediatric neuro-oncology patients.
Highlights
The psychosocial effects of a pediatric brain tumor diagnosis and treatment course impact the entire family unit, including the child’s parental figures [1,2,3]
Parental caregiver distress is notably higher in pediatric brain tumor diagnoses than for parents of children with other forms of cancer [4]
Sampling occurred in a sequential convenience sampling manner based on palliative care team consultations for pediatric neuro-oncology patients
Summary
The psychosocial effects of a pediatric brain tumor diagnosis and treatment course impact the entire family unit, including the child’s parental figures [1,2,3]. Parents of brain tumor patients experience distress in excess of other childhood cancer parents, as noted by the issues unique to neuro-oncology diagnoses as compared to other childhood cancers: higher mortality rates; clustering of symptom burden such as fatigue, headache, pain, nausea, weakness, changes in ambulation and strength; faster progression; lasting changes in the child’s cognition and development; and impact to the child’s personality. It important to study these parents separately to assess their unique care needs. Use of latent class analysis to categorize beliefs representing a parent’s perception of what they should do to be a good parent for a seriously ill child revealed a gender-based grouping of fathers to include a paternal emphasis on information-gathering about the child’s health and making informed care decisions [12]
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