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      A family systems approach to genetic counseling: Development of narrative interventions

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          Abstract

          To what extent are family systems approaches relevant in the genomics era? What difference does it make to remember the wider social context within which ‘problems’ associated with a genetic diagnosis reside? How does this influence the conversations we have with our patients? These questions will be considered in relation to systemic approaches to genetic counseling practice. Narrative therapy with an emphasis on people's strengths, wishes, and ways of resisting the effects of a problem may be a particularly useful framework for genetic counselors. Narrative practice views people as multi‐storied and is concerned with the question of how we encourage people to tell their stories in ways that make them feel stronger. Increased uptake of genomic testing and the number of people seeking genetic counseling present opportunities to consider new ways of working, particularly around support following a new genetic diagnosis. One option is to realize the potential of group interventions. Family therapy and narrative practices have the potential to encourage communication and for families to learn from each other.

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          Most cited references31

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          Process and outcome in communication of genetic information within families: a systematic review.

          The communication of risk is a central activity in clinical genetics, with genetic health professionals encouraging the dissemination of relevant information by individuals to their at-risk family members. To understand the process by which communication occurs as well as its outcomes, a systematic review of actual communication in families about genetic risk was conducted. Findings from 29 papers meeting the inclusion criteria were summarised and are presented narratively. Family communication about genetic risk is described as a deliberative process, in which: sense is made of personal risk; the vulnerability and receptivity of the family member is assessed; decisions are made about what will be conveyed; and the right time to disclose is selected. The communication strategy adopted will depend on these factors and varies within families as well as between families. Inherent in these processes are conflicting senses of responsibility: to provide potentially valuable information and to prevent harm that may arise from this knowledge. However, the research 'outcomes' of communication have been professionally determined (number of relatives reported as informed, uptake of testing, knowledge of the recipient) and are typically unrelated to the concerns of the family member. The impact of communication on the individual, family members, and family relationships is of concern to the individual conveying the information, but this is largely self-reported. Currently, there is insufficient information to inform the development of theoretically and empirically based practice to foster 'good' communication. The implications for future research are discussed.
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            Family communication between children and their parents about inherited genetic conditions: a meta-synthesis of the research.

            In families affected by an inherited genetic condition, parents face a difficult task of having to communicate genetic risk information to their children. A systematic review of all major health and medical research databases was undertaken using current guidelines to identify original relevant research papers from 1980 to 2007, which explore the issues surrounding parents and their children's communication about inherited genetic risk. A total of 9698 abstracts were found of which 158 research papers were reviewed as potentially relevant. A final 17 papers were identified which met predefined inclusion and exclusion criteria. Using a meta-ethnographic approach, all identified studies' findings were analysed as primary data sources by three researchers, who independently identified the key concepts. A high level of congruence emerged between researchers, and agreed concepts were used to examine similarities and differences between papers. The findings informed the development of a narrative framework exploring the issues that related to parents' explanations of inherited genetic risk to their children, the reasons for sharing information, children's understanding of parents' explanations, the emotions evoked for family members and the support and guidance received from health professionals. Providing information, checking understanding, and explaining and managing the emotional feelings that arise were integral to supporting children's coping with genetic risk information. However, many parents struggled with one or more of these components and required more support specific to the child's developmental stage, and family members' transition of readjustment to the impact of the genetic condition.
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              Parents' and children's communication about genetic risk: a qualitative study, learning from families' experiences.

              Little is known about how parents explain to their children their risk of inheriting a gene that may cause disease in the child or in the child's future progeny. This study explored how genetic risk information is shared between family members and the factors affecting it, to ascertain the implications for children, young people and their parents to inform future service development and provision. A volunteer group of parents, children (8-11 years) and young people (12+ years) in families affected by or at risk of one of six inherited genetic conditions was interviewed. The semi-structured interviews explored the roles of family members, the language used and the self-reported psychological outcomes in a discussion on genetic risk information. The findings were analysed using grounded theory. A total of 33 families participated, which included 79 individuals. Parents often found discussing genetic risk information very difficult and emotionally painful. Discussions were not usually planned and often a major event prompted parents to finally explain genetic risks to their children; however, children usually preferred to learn about the genetic condition gradually throughout childhood. Parents identified a number of challenges they faced related to talking to children, and many thought health professionals should provide more advice to assist them in providing developmentally appropriate information. We therefore conclude that greater emphasis is required in supporting parents and children in discussing genetic risk information throughout their child's development. Open communication about genetic risks throughout childhood seemed to help children and parents cope better and come to terms with the implications of the genetic condition.
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                Author and article information

                Contributors
                Rhona.macleod@mft.nhs.uk
                Journal
                J Genet Couns
                J Genet Couns
                10.1002/(ISSN)1573-3599
                JGC4
                Journal of Genetic Counseling
                John Wiley and Sons Inc. (Hoboken )
                1059-7700
                1573-3599
                12 January 2021
                February 2021
                : 30
                : 1 , Second World Congress on Genetic Counseling ( doiID: 10.1002/jgc4.v30.1 )
                : 22-29
                Affiliations
                [ 1 ] Manchester Centre for Genomic Medicine St Mary's Hospital Manchester University NHS Foundation Trust Manchester Academic Health Sciences Centre Manchester UK
                [ 2 ] Division of Evolution and Genomic Sciences School of Biological Sciences University of Manchester Manchester UK
                [ 3 ] Faculty of Health and Well‐being Sheffield Hallam University Sheffield UK
                [ 4 ] Riverbank Psychology Manchester UK
                Author notes
                [*] [* ] Correspondence

                Rhona MacLeod, Manchester Centre for Genomic Medicine, St Mary's Hospital, Manchester University NHS Foundation Trust, Manchester Academic Health Sciences Centre, 6th Floor, Oxford Road, Manchester, M13 9WL, UK.

                Email: Rhona.macleod@ 123456mft.nhs.uk

                Article
                JGC41377
                10.1002/jgc4.1377
                7898613
                33438335
                b99117f1-96d3-4500-8077-4dd4a3dd1756
                © 2021 The Authors. Journal of Genetic Counseling published by Wiley Periodicals LLC on behalf of National Society of Genetic Counselors.

                This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                History
                : 20 August 2020
                : 02 December 2020
                : 05 December 2020
                Page count
                Figures: 2, Tables: 2, Pages: 8, Words: 6200
                Funding
                Funded by: CHDI Foundation , open-funder-registry 10.13039/100005725;
                Categories
                Special Issue
                Special Issue: Second World Congress on Genetic Counseling
                Custom metadata
                2.0
                February 2021
                Converter:WILEY_ML3GV2_TO_JATSPMC version:5.9.7 mode:remove_FC converted:22.02.2021

                Genetics
                counseling techniques,family,genetic counseling,multi‐disciplinary
                Genetics
                counseling techniques, family, genetic counseling, multi‐disciplinary

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