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. 2014 Winter;4(3):233-51.
doi: 10.1353/nib.2014.0068.

Expectations for function and independence by childhood brain tumors survivors and their mothers

Matthew S Lucas, Lamia P Barakat, Nora L Jones, Connie M Ulrich, Janet A Deatrick

Expectations for function and independence by childhood brain tumors survivors and their mothers

Matthew S Lucas et al. Narrat Inq Bioeth. 2014 Winter.

Abstract

Survivors of childhood brain tumors face many obstacles to living independently as adults. Causes for lack of independence are multifactorial and generally are investigated in terms of physical, cognitive, and psychosocial treatment-related sequelae. Little is known, however, about the role of expectation for survivors' function. From a mixed-methods study including qualitative interviews and quantitative measures from 40 caregiver-survivor dyads, we compared the data within and across dyads, identifying four distinct narrative profiles: (A) convergent expectations about an optimistic future, (B) convergent expectations about a less optimistic future, (C) non-convergent expectations about a less optimistic future, and (D) non-convergent expectations about an unclear future. Dyads both do well and/or struggle in systematically different manners in each profile. These profiles may inform the design of interventions to be tested in future research and help clinicians to assist families in defining, (re-)negotiating, and reaching their expectations of function and independence.

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Conflict of interest statement

Conflicts of Interest: The authors report no conflicts of interest.

Figures

Figure 1
Figure 1
Narrative Profiles of Expectation for Function and Independence
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