The Many Roles of the Rock: A Qualitative Inquiry into the Roles and Responsibilities of Fathers of Children with Brain Tumors

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.

A meta-ethnographic study of fathers’ experiences of caring for a child with a life-limiting illness

“… 60 , 78 – 84 The majority of included studies interviewed both parents ( n = 41, 66%), with only 22 focusing solely on fathers’ experiences of caregiving. 1 , 3 – 5 , 23 , 24 , 27 , 71 , 75 , 77 , 85 – 95 Children’s life-limiting conditions mainly included cancer, 5 , 8 , 10 , 21 , 56 , 70 , 71 , 75 – 77 , 80 , 83 , 84 , 87 – 89 , 93 , 95 – 98 cerebral palsy, 24 , 99 cystic fibrosis 81 , 94 , 95 , 100 …”

“… 21 , 92 They experienced fear, uncertainty and lack of control over the illness. 1 , 4 , 5 , 9 , 23 , 28 , 59 , 72 , 77 , 79 , 81 , 82 , 85 – 87 , 89 , 93 , 94 , 109 Fathers found themselves in a state of crisis; their emotional pain and children’s physical suffering seemed invincible and paralleled one another: I guess that’s the hardest part, dealing with the pain and suffering, just tremendous suffering. It’s just serious, serious pain and that just tears the guts out of you .…”

“…Fathers’ experiences were shaped by assumptions about masculinity and fatherhood, embedded within the organisation of support systems and medical care institutions. 21 They took on an assumed responsibility to lead the family, 4 , 88 , 89 which often meant putting aside or repressing painful emotions. Being the ‘strong’ one allowed them to fulfil the role of provider, and even protector, to look after mothers and their families.…”

Homestead together: Pediatric palliative care telehealth support for rural children with cancer during home‐based end‐of‐life care

“…The markedly low family wellness scores reported by fathers in this study and parents of children with brain tumors warrants further exploration as to parental gender or child diagnoses patterns and family function 47 . Although the father sample size is notably low and all included fathers had children with central nervous system tumors, fathers rated their child's quality‐of‐life scores much lower than mothers, although they did not perceive a high degree of symptom burden in their child.…”

Honoring the Good Parent Intentions of Courageous Parents: A Thematic Summary from a US-Based National Survey

“…In 2019, Hill and colleagues expanded the "good parent concept" into a longitudinal exploration with recognition that some parents may change their parenting priorities over time, seemingly from an emphasis on knowledge to an emphasis on love [6]. In more recent years, Robinson et al focused on father's "good-parent beliefs" and strategically explored how staff may support fathers in the good-parent beliefs concept for paternal perspective and inclusivity [9,14].…”