Family Adjustment to Hereditary Cancer Syndromes: A Systematic Review

Pedro Gomes, Giada Pietrabissa, Eunice R. Silva, João Silva, Paula Mena Matos, Maria Emília Costa, Vanessa Bertuzzi, Eliana Silva, Maria Carolina Neves and Célia M. D. Sales
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Pedro Gomes: Cancer Genetics Group, Research Centre of IPO Porto (CI-IPOP)/RISE@CI-IPOP (Health Research Network), Portuguese Oncology Institute of Porto (IPO Porto)/Porto Comprehensive Cancer Centre (Porto.CCC), 4200-072 Porto, Portugal
Giada Pietrabissa: Department of Psychology, Catholic University of the Sacred Heart, 20123 Milan, Italy
Eunice R. Silva: Cancer Genetics Group, Research Centre of IPO Porto (CI-IPOP)/RISE@CI-IPOP (Health Research Network), Portuguese Oncology Institute of Porto (IPO Porto)/Porto Comprehensive Cancer Centre (Porto.CCC), 4200-072 Porto, Portugal
João Silva: Cancer Genetics Group, Research Centre of IPO Porto (CI-IPOP)/RISE@CI-IPOP (Health Research Network), Portuguese Oncology Institute of Porto (IPO Porto)/Porto Comprehensive Cancer Centre (Porto.CCC), 4200-072 Porto, Portugal
Paula Mena Matos: Centre for Psychology at University of Porto (CPUP), Faculty of Psychology and Education Sciences at University of Porto (FPCEUP), 4200-135 Porto, Portugal
Maria Emília Costa: Centre for Psychology at University of Porto (CPUP), Faculty of Psychology and Education Sciences at University of Porto (FPCEUP), 4200-135 Porto, Portugal
Vanessa Bertuzzi: Department of Psychology, Catholic University of the Sacred Heart, 20123 Milan, Italy
Eliana Silva: Centre for Psychology at University of Porto (CPUP), Faculty of Psychology and Education Sciences at University of Porto (FPCEUP), 4200-135 Porto, Portugal
Maria Carolina Neves: Cancer Genetics Group, Research Centre of IPO Porto (CI-IPOP)/RISE@CI-IPOP (Health Research Network), Portuguese Oncology Institute of Porto (IPO Porto)/Porto Comprehensive Cancer Centre (Porto.CCC), 4200-072 Porto, Portugal
Célia M. D. Sales: Centre for Psychology at University of Porto (CPUP), Faculty of Psychology and Education Sciences at University of Porto (FPCEUP), 4200-135 Porto, Portugal

IJERPH, 2022, vol. 19, issue 3, 1-22

Abstract: Hereditary cancer syndromes are inherited pathogenic genetic variants that significantly increase the risk of developing cancer. When individuals become aware of their increased probability of having cancer, the whole family is affected by this new reality and needs to adjust. However, adjustment to hereditary cancer syndromes has been mainly studied at an individual level, and research about familial adjustment remains dispersed and disorganized. To overcome this gap, this review aims to understand how families adjust to genetic testing and risk management, and to what extent the family’s adjustment influences the psychological response and risk management behaviors of mutation carriers. We conducted searches on the PubMed/Med Line, PsycInfo, SCOPUS, and Google Scholar databases and used the Mixed Methods Appraisal Tool (MMAT-v2018) to assess the methodological quality of each selected study. Thirty studies met the inclusion criteria. Most results highlighted the interdependent nature of adjustment of pathogenic variant carriers and their families. The way carriers adjust to the syndrome is highly dependent on family functioning and related to how family members react to the new genetic information, particularly partners and siblings. Couples who share their worries and communicate openly about cancer risk present a better long-term adjustment than couples who use protective buffering (not talking about it to avoid disturbing the partner) or emotional distancing. Parents need help dealing with disclosing genetic information to their children. These findings reinforce the importance of adopting a family-centered approach in the context of genetic counseling and the necessity of involving family members in research.

Keywords: hereditary cancer syndromes; genetic testing; family adjustment; cancer risk management; decision-making; genetic counseling (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2022
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