Patterns of family management for adolescent and young adult brain tumor survivors
| Autor: | Jennifer Toth, Kathleen A. Knafl, Lamia P. Barakat, Janet A. Deatrick, George J. Knafl, Wendy L. Hobbie, Jill P. Ginsberg, Michael Fisher, Thomas Hardie, Maureen Reilly, Nicole SanGiacomo, Sue Ogle, Elizabeth G Broden |
|---|---|
| Rok vydání: | 2018 |
| Předmět: |
Adult
Male Typology Adolescent MEDLINE Mothers Sample (statistics) Qualitative property PsycINFO Disease cluster Article Developmental psychology Young Adult 03 medical and health sciences 0302 clinical medicine Quality of life (healthcare) Cluster Analysis Humans Family Survivors 030212 general & internal medicine Young adult General Psychology Brain Neoplasms humanities Caregivers 030220 oncology & carcinogenesis Chronic Disease Quality of Life Female Psychology Attitude to Health |
| Zdroj: | Journal of Family Psychology. 32:321-332 |
| ISSN: | 1939-1293 0893-3200 |
| Popis: | Little is known about how families systemically incorporate the work of caring for adolescent and young adult (AYA) survivors of childhood brain tumors who often remain dependent on their families well into adulthood. The primary aim of this study was to develop a typology of family management (FM) patterns for AYA survivors. The secondary aims were to compare them with FM patterns previously described for children with chronic health conditions and to validate the patterns using quantitative and qualitative data. Guided by the Family Management Styles Framework, a sequential, mixed-methods design was used to gather quantitative data from 186 mothers (primary caregivers) and 134 AYA survivors. FM patterns (family focused; somewhat family focused; somewhat condition focused; and condition focused) were identified using cluster analysis of data from the Family Management Measure. FM patterns were found to be similar to those for children with chronic health physical conditions and were significantly related to maternal quality of life, survivor quality of life (health-related quality of life [self- and mother proxy report]), cancer-related variables (treatment intensity, medical late effects), and family functioning in theoretically meaningfully ways. Significant demographic characteristics included private insurance and AYA survivors' engagement in school or employment. Qualitative analysis of data from 45 interviews with mothers from the larger sample provided additional support for and elaborated descriptions of FM patterns. Identification of FM patterns moves the science of family caregiving forward by aggregating data into a conceptually based typology, thereby taking into account the complex intersection of the condition, the family, and condition management. (PsycINFO Database Record |
| Databáze: | OpenAIRE |
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