Literature DB >> 31189929

Challenges and strategies proposed by genetic health professionals to assist with family communication.

Alison L Young1,2, Phyllis N Butow3, Katherine M Tucker4,5, Claire E Wakefield6,7, Emma Healey8, Rachel Williams4,5.   

Abstract

Hereditary genetic conditions have implications for the whole family and therefore genetic health professionals (GHPs) interact with multiple family members, sometimes individually and sometimes in aggregate. Family communication is important to ensure dissemination of genetic information to potentially affected relatives and to facilitate supportive family interactions around genetic testing and risk management decisions. Yet, little is known about how GHPs perceive and manage these interactions. A total of 73 GHPs working across Australian cancer genetic clinics participated in semi-structured focus groups or interviews to elucidate what aspects of family communication they found most challenging, the strategies they used, and whether current academic training provides sufficient guidance to address familial concerns. Patients' lack of understanding about the importance of communicating genetic information to at-risk relatives was the most common challenge reported. GHPs reported that the patients' concern for their families' emotional responses as well as wider family system challenges (e.g. estrangement) affected family communication. Common strategies during consultations included structuring appointments logistically to account for family dynamics and post-consultation use of family letters and follow-up appointments. GHPs generally felt equipped with the skills and training provided to address patient concerns, but also desired upskilling in techniques relating to systemic family issues and behavioural change. Reflective practice strategies were requested by geneticists and nurses to foster therapeutic skill usage. Additional family therapy training while on the job may be beneficial in order to meet current challenges faced in clinical practice and can be provided as further professional development.

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Mesh:

Year:  2019        PMID: 31189929      PMCID: PMC6871519          DOI: 10.1038/s41431-019-0447-9

Source DB:  PubMed          Journal:  Eur J Hum Genet        ISSN: 1018-4813            Impact factor:   4.246


  5 in total

1.  Disclosure of secondary findings in exome sequencing of 2480 Japanese cancer patients.

Authors:  Yasue Horiuchi; Hiroyuki Matsubayashi; Yoshimi Kiyozumi; Seiichiro Nishimura; Satomi Higashigawa; Nobuhiro Kado; Takeshi Nagashima; Maki Mizuguchi; Sumiko Ohnami; Makoto Arai; Kenichi Urakami; Masatoshi Kusuhara; Ken Yamaguchi
Journal:  Hum Genet       Date:  2020-07-24       Impact factor: 4.132

2.  Multiple approaches to enhancing cancer communication in the next decade: translating research into practice and policy.

Authors:  Claire C Conley; Amy K Otto; Glynnis A McDonnell; Kenneth P Tercyak
Journal:  Transl Behav Med       Date:  2021-11-30       Impact factor: 3.046

3.  Disclosure of genetic information to family members: a systematic review of normative documents.

Authors:  Amicia Phillips; Pascal Borry; Ine Van Hoyweghen; Danya F Vears
Journal:  Genet Med       Date:  2021-07-07       Impact factor: 8.822

4.  How to inform at-risk relatives? Attitudes of 1379 Dutch patients, relatives, and members of the general population.

Authors:  Lieke Marleen van den Heuvel; Daphne Stemkens; Wendy A G van Zelst-Stams; Floor Willeboordse; Imke Christiaans
Journal:  J Genet Couns       Date:  2019-12-30       Impact factor: 2.537

5.  Genetic testing for hereditary cancer syndromes: patient recommendations for improved risk communication.

Authors:  Samantha Pollard; Steve Kalloger; Deirdre Weymann; Sophie Sun; Jennifer Nuk; Kasmintan A Schrader; Dean A Regier
Journal:  Health Expect       Date:  2020-04-27       Impact factor: 3.377

  5 in total

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