Family Identity and Roles in the Context of Li-Fraumeni Syndrome: "No One's Like Us Mutants".
Health Soc Work
; 46(4): 299-307, 2021 Nov 16.
Article
en En
| MEDLINE
| ID: mdl-34618014
ABSTRACT
Li-Fraumeni syndrome (LFS) is a rare hereditary cancer syndrome in which individuals have a significantly increased risk of developing multiple cancers throughout the life span. An LFS diagnosis may shift the individual's sense of self and tolerance of cancer risk as they engage in cancer screening and cancer prevention activities. This study examined the impact of family identity on health decision making, communication, and role function. Forty-five families completed one or more interviews during an annual, protocol-specific cancer screening study. An interdisciplinary team analyzed 66 interviews using interpretive description and modified grounding theory. Thematically, identity emerged as an evolving construct regarding self and/or family, embedded in historical and ongoing experiences with LFS. Notions of individual and shared family identities guided decision making related to healthcare and influenced interpersonal communication and role function between supportive networks and families. Alignment between individual, family, and generational identities may shape engagement in genetic testing, risk management, and family life. Medical teams that are unequipped to address the psychosocial challenges that LFS populations face may include mental health professionals on interprofessional care teams to navigate risk management and consequential familial conflict.
Palabras clave
Texto completo:
1
Colección:
01-internacional
Banco de datos:
MEDLINE
Asunto principal:
Síndrome de Li-Fraumeni
Tipo de estudio:
Diagnostic_studies
/
Guideline
/
Prognostic_studies
/
Qualitative_research
/
Screening_studies
Límite:
Humans
Idioma:
En
Revista:
Health Soc Work
Año:
2021
Tipo del documento:
Article