Family-oriented support in genetic counselling: a scoping review of clinical practice and psychotherapeutic interventions.

Authors

Claire E Green, Joanna Smith, Hilary Piercy

Published in

European journal of human genetics : EJHG. Jul 13, 2026. Epub Jul 13, 2026.

Abstract

Families living with inherited genetic conditions (IGCs) face practical and emotional challenges that affect individual well-being and family relationships. Although genetic counselling recognises the familial nature of genomic risk, support is often limited to patient-led disclosure. This scoping review examined how family-oriented support is conceptualised, delivered, and evaluated within genetic counselling and related psychosocial services. We define family-oriented support as any practice that explicitly considers relatives and family relationships, and systemic family-oriented care as family-systems-based models treating the family as the unit of care. Following PRISMA-ScR guidance, seven databases were searched to August 2025 for publications describing practices or interventions with a clear family element in services for people living with IGCs. Data were charted descriptively and synthesised using Rolland's Family Systems Illness/Family Systems Genetic Illness (FSI/FSGI) frameworks. Thirty-three publications were included, describing (1) clinical practice with a family element (n = 12), mainly strategies to promote intrafamilial communication, and (2) psychotherapeutic approaches (n = 21), ten of which had been formally evaluated. Qualitative evidence suggested perceived psychosocial benefits, whereas quantitative findings were modest or mixed, constrained by small samples and limited follow-up. Most activity reflected relatively early, proband-centred positions on the FSI/FSGI continuum; only a few multifamily and narrative interventions and one local service model approximated systemic family-oriented care and remained small-scale and specialist. Work focused largely on hereditary breast/ovarian cancer, with marked gaps for untreatable or unpredictable conditions, men, partners, children, and non-Western groups. Advancing systemic, family-level care will require embedding FSI/FSGI principles in training and service design and investing in longitudinal, family-level evaluation.

PMID:
42443503
Bibliographic data and abstract were imported from PubMed on 14 Jul 2026.

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