Couples coping with screening burden and diagnostic uncertainty in Li-Fraumeni syndrome: Connection versus independence.
J Psychosoc Oncol
; 37(2): 178-193, 2019.
Article
em En
| MEDLINE
| ID: mdl-30591002
ABSTRACT
PURPOSE:
Li-Fraumeni Syndrome (LFS) is an inherited tumor predisposition syndrome with lifetime cancer risks approaching 100% and evolving risk-management strategies. This study evaluated couples' coping with LFS-related burdens. RESEARCHAPPROACH:
Constructivist grounded theory and anticipatory loss frameworks guided design and analysis. SAMPLE ANDMETHODS:
Twenty-six individuals enrolled in the NCI LFS Family Study completed semi-structured interviews with their partner during annual screening visits. An interdisciplinary team completed open and focused coding to identify patterns of coping and adaptation.FINDINGS:
Couples described living with ambiguous danger, a state of chronic apprehension resulting from LFS-associated uncertainties. Most couples communicated openly and alternated shouldering the burden, while others engaged in protective buffering to shield each other from distress and sustain the appearance of normalcy.INTERPRETATION:
Optimally, coping reduces shared psychosocial distress, yet some strategies may inadvertently increase disconnection. IMPLICATIONS Mental health support is critical for both partners coping with LFS, together and separately.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Adaptação Psicológica
/
Programas de Rastreamento
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Síndrome de Li-Fraumeni
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Cônjuges
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Incerteza
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Relações Interpessoais
Tipo de estudo:
Diagnostic_studies
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Prognostic_studies
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Qualitative_research
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Screening_studies
Limite:
Adult
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Aged
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Female
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Humans
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Male
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Middle aged
Idioma:
En
Ano de publicação:
2019
Tipo de documento:
Article