Evidence map›Paper›PMID 42443503›Full record

ReviewEuropean journal of human genetics : EJHG2026

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

Claire E Green, Joanna Smith, Hilary Piercy

Abstract readReview
PubMed Publisher
In one paragraph

Review in European journal of human genetics : EJHG, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

3 authors.

Claire E GreenNational Ehlers Danlos Syndrome Service, Sheffield Children's Hospital Foundation Trust, Sheffield, UK & Sheffield Hallam University, Sheffield, UK. claire.green13@nhs.net.ORCID http://orcid.org/0000-0003-0483-1197
Joanna SmithThe Centre for Applied Health and Social Care Research, Sheffield Hallam University, Sheffield, UK.ORCID http://orcid.org/0000-0003-0974-3591
Hilary PiercyThe Centre for Applied Health and Social Care Research, Sheffield Hallam University, Sheffield, UK.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Identifiers

PMID42443503

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.