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Volume 19
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10.3390/ijerph19031603
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Review

Family Adjustment to Hereditary Cancer Syndromes: A Systematic Review

by
Pedro Gomes
1,2,*,
Giada Pietrabissa
3,4,
Eunice R. Silva
1,5,
João Silva
1,6,
Paula Mena Matos
2,
Maria Emília Costa
2,
Vanessa Bertuzzi
3,
Eliana Silva
2,
Maria Carolina Neves
1,2 and
Célia M. D. Sales
2
1
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
2
Centre for Psychology at University of Porto (CPUP), Faculty of Psychology and Education Sciences at University of Porto (FPCEUP), 4200-135 Porto, Portugal
3
Department of Psychology, Catholic University of the Sacred Heart, 20123 Milan, Italy
4
Psychology Research Laboratory, IRCCS Istituto Auxologico Italiano, 20122 Milan, Italy
5
Psychology Service, Portuguese Oncology Institute of Porto, 4200-072 Porto, Portugal
6
Medical Genetics Service, Portuguese Oncology Institute of Porto, 4200-072 Porto, Portugal
*
Author to whom correspondence should be addressed.
Int. J. Environ. Res. Public Health 2022, 19(3), 1603; https://doi.org/10.3390/ijerph19031603
Submission received: 1 December 2021 / Revised: 19 January 2022 / Accepted: 24 January 2022 / Published: 30 January 2022
(This article belongs to the Special Issue Psychosocial Impact of Chronic Disease on Patients, Families and Caregivers)
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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 hereditary cancer syndromes; genetic testing; family adjustment; cancer risk management; decision-making; genetic counseling

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MDPI and ACS Style

Gomes, P.; Pietrabissa, G.; Silva, E.R.; Silva, J.; Matos, P.M.; Costa, M.E.; Bertuzzi, V.; Silva, E.; Neves, M.C.; Sales, C.M.D. Family Adjustment to Hereditary Cancer Syndromes: A Systematic Review. Int. J. Environ. Res. Public Health 2022, 19, 1603. https://doi.org/10.3390/ijerph19031603

AMA Style

Gomes P, Pietrabissa G, Silva ER, Silva J, Matos PM, Costa ME, Bertuzzi V, Silva E, Neves MC, Sales CMD. Family Adjustment to Hereditary Cancer Syndromes: A Systematic Review. International Journal of Environmental Research and Public Health. 2022; 19(3):1603. https://doi.org/10.3390/ijerph19031603

Chicago/Turabian Style

Gomes, Pedro, 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. 2022. "Family Adjustment to Hereditary Cancer Syndromes: A Systematic Review" International Journal of Environmental Research and Public Health 19, no. 3: 1603. https://doi.org/10.3390/ijerph19031603

APA Style

Gomes, P., Pietrabissa, G., Silva, E. R., Silva, J., Matos, P. M., Costa, M. E., Bertuzzi, V., Silva, E., Neves, M. C., & Sales, C. M. D. (2022). Family Adjustment to Hereditary Cancer Syndromes: A Systematic Review. International Journal of Environmental Research and Public Health, 19(3), 1603. https://doi.org/10.3390/ijerph19031603

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