Caregivers of young adult survivors (YAS) of childhood brain tumors, usually their mothers, live dramatically altered lives as they incorporate illness management into family life and function in caregiving roles well into the survivors’ adulthood.
Elizabeth G. Broden, BSN
Janet A. Deatrick, PhD, FAAN
Janet A. Deatrick is Professor Emerita of Nursing, and Elizabeth G. Broden is a PhD student and Hilman Scholar in Nursing Innovation, at the University of Pennsylvania School of Nursing in Philadelphia.
Caregivers of young adult survivors (YAS) of childhood brain tumors, usually their mothers, live dramatically altered lives as they incorporate illness management into family life and function in caregiving roles well into the survivors’ adulthood.1,2 Seventy-five percent of children diagnosed with brain tumors now survive into adulthood3,4; however, brain tumors and their treatment result in one of the most severe risk profiles for childhood cancer survivors (chronic morbidities, reduced health-related quality of life) and their caregivers (ongoing care demands).5,6,7,8,9
YAS often have persistent and significant personal (eg, developmental, neurocognitive, interpersonal), institutional (eg, economic, education, employment, insurance, transportation), and overall health barriers to achieving developmental milestones of adulthood and transitioning to independence and adult services. Families and caregivers experience increased demands to family management, as late effects of the brain tumor and treatment are integrated into family life.10
Key dimensions of family management identified using the Family Management Measure (FaMM) for children with chronic conditions who are not cancer survivors include: how the family member sees the child’s daily life; their ability or competence to manage the condition; amount of effort or demands associated with the condition; difficulty experienced within family life; impact of the condition on the family; and mutuality with their partner.6 Quantitative family management patterns derived from these key dimensions include: family-focused, somewhat family-focused, somewhat condition-focused, and condition-focused.
Family Focus Versus Condition Focus
Family-focused family members report that they accommodate the special needs of the YAS into the usual family routine and perceive themselves to have condition management ability, a positive view of their child, and parental [partner] mutuality; lower condition management effort and family life difficulty. Condition-focused family members report their family life is centered on managing the children’s special needs while the needs of the family are secondary.
The family members in family-focused and somewhat family-focused families report better child and family outcomes than do family members in condition-focused and somewhat condition-focused families.6
Family management patterns for families of YAS are similar to those identified for children with other chronic conditions.6 Using mixed methods analyses of quantitative FaMM data from caregivers, professionals, and YAS of childhood brain tumors and qualitative semi-structured interviews with caregivers, we described successful or family-focused and somewhat family-focused patterns of family management.
Family management challenges that dominated condition-focused families persisted or became worse over time.11 Family-focused families perceived that they had a more normalized family life and greater ease in condition management in terms of the child’s daily life, ability, or competence to manage, and caregiver—partner mutuality in approach to condition management. They also perceived less effort or fewer demands associated with condition management, fewer difficulties experienced within family life, and less impact on family life at the time and in the future.
Those families that fell into the condition-focused and somewhat condition-focused categories are therefore considered at higher risk for poorer outcomes. In terms of intervening with high-risk families, six, somewhat dated, intervention studies have been conducted 1998-2009 with caregivers of young children who have chronic conditions or.12 These interventions are not generally accessible to or translatable for the needs and complicated health status of YAS and the associated burden for their caregivers. Therefore, future research can focus on tailoring an evidence-based approach to behavior change, eg, problem-solving skills training, to incorporate family management goals and challenges.
Implications for Practice
In terms of implications for practice, we can reexamine our goals for teaching patients, their caregivers, and families to make them feel more able to manage their situation. That is, we can ask ourselves, when we teach patients, caregivers, and families about condition management if we are inadvertently reinforcing how to be more condition-focused or if we are providing guidance that helps them incorporate condition management into ongoing family life and become more family-focused?
While knowing about the condition and its treatment is incredibly important, if the family does not see themselves as being able to problem-solve condition management in everyday life, they will perpetuate their risk by their inability to see beyond the condition to reestablish a more normalized family life. For example, the patient/survivor may have goals for the future that are unrealistic at this juncture (eg, they daily say to their families that they are going to get married and have a family). On one hand, we can teach about neurocognitive late effects and how this is an example of one of them. On the other hand, we can also guide the caregiver and family as they problem-solve effective daily management of the challenge presented by the neurocognitive late effects. The latter approach not only can lead to better survivor functioning but also to better caregiver and family functioning.
While we often acknowledge the importance of “support” for caregivers, reframing teaching to include a family-focused approach to condition management can help us operationalize what is meant by “support” to make caregivers and families feel more able to perform in their roles.
Developing the Family Management Intervention Protocol. Oncology Nursing Foundation and the American Brain Tumor Foundation, Funded 1/15/2016-1/15/2018.
Mothers and Fathers Perspectives: Family Management of Young Adult Survivors of Childhood Brain Tumors. Alex’s Lemonade Stand Foundation, Funded, 11/2/11-01/2/15.
Mothers as Caregivers for Survivors of Pediatric Brain
Tumors. NIH/NINR (R01 NR009651
01A1), Funded, 7/17/2007-5/31/2011.
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Oncology Nursing Foundation and the American Brain Tumor Foundation, Funded, 1/15/2014-1/15/2016 & Mothers as Caregivers for Survivors of Pediatric Brain Tumors. NIH/NINR (R01 NR009651-01A1), Funded, 7/17/2007-5/31/2011.
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