Mother-caregiver expectations for function among survivors of childhood brain tumors

Abstract

Purpose Children diagnosed with brain tumors increasingly survive to adulthood, although they do so with needs often requiring continued parental caregiving. We sought to describe the nature of caregivers’ expectations about survivors’ function and how expectations connect to ongoing management and decision-making. Methods Forty-five qualitative interviews with mother-caregivers were conducted and coded for themes related to expectations for their adolescent/young adult children living post-childhood brain tumors. Results Five main themes emerged as integral to mother-caregiver expectations: realizing a difference in the survivor, noticing limitations to independence in the survivor, memories of learning about clinical prognoses as understood from consent meetings and education, managing these realizations, and acknowledging unresolved challenges. Conclusions Caregiver expectations are influenced by both initial clinical interactions and contemporary family dynamics and require individual- and family-specific survivorship planning. As caregiver expectations can influence management behaviors that impact outcomes and possibly independence, implications for clinician-caregiver shared decision-making are substantial.

Long‐term issues and supportive care needs of adolescent and young adult childhood brain tumour survivors and their caregivers: A systematic review

“…In some cases, this threat stopped parents from planning future activities, and instead, they lived very much in the present . Another source of uncertainty came from whether their child would ever reach independence . In one study, the majority of parents believed their child would never be independent .…”

“…Two articles highlighted that different caregivers and families deal with survivorship differently and will have different needs . One study found that clinicians find it challenging to tailor interventions to family and caregiver needs, as tools to assess family functioning and caregiver coping are not available .…”

“…Eight articles reported caregivers' issues, 21,23,24,30,32,36,73,74 four focused specifically on studying the role of the family caregiver. 30,36,73,74 Caregiver participants consisted of parents (mothers and fathers), 21,30,32 mothers only, 23,36,73,74 and mixed family members (including grandparents). 24 Caregiver issues had five themes (see Figure 5): Survivor well-being; Uncertainty; Increased responsibilities; Self-well-being; and Family relationships.…”

“…30,32 Another source of uncertainty came from whether their child would ever reach independence. 32,74 In one study, the majority of parents believed their child would never be independent. 74 Some worried about leaving them alone in the house or their ability to be financially independent.…”

Expectations for Function and Independence by Childhood Brain Tumors Survivors and Their Mothers

“…Mothers usually make countless decisions for their children, generally until the decision making at some point shifts to the (now older) healthy child. Mothers of children in cancer treatment or survivorship similarly make countless decisions, although shifting decision making may not follow prognostic recovery patterns for those with sufficient neurologic injury, and these decisions have been shown to be influenced by expectations for function, independence, and the future in general (Lucas, 2014). Indeed, recent work has focused on the powerful stories of parents’ experiences after the diagnosis of a childhood brain tumor, including struggles in survivorship related to treatment-related sequelae (Anonymous Three, 2014; Carlson, 2014; Rocker, 2014; Scheumann, 2014).…”