{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,18]],"date-time":"2026-03-18T08:37:35Z","timestamp":1773823055519,"version":"3.50.1"},"reference-count":27,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2022,4,23]],"date-time":"2022-04-23T00:00:00Z","timestamp":1650672000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2022,4,23]],"date-time":"2022-04-23T00:00:00Z","timestamp":1650672000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Prim. Care"],"published-print":{"date-parts":[[2022,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>Hereditary cancer syndromes have been conceptualized as a family level process. The present study explores the complexity and challenges of family adaptation to the hereditary cancer syndrome, in the context of genetic counseling and long-term cancer risk management and follow-up surveillance.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>We performed semi-structured interviews with 13 participants with one of the following hereditary cancer syndromes: Lynch Syndrome, Hereditary Diffuse Gastric Cancer Syndrome, Hereditary Breast and Ovarian Cancer Syndrome, or Familial Adenomatous Polyposis. The interview was developed through a participatory approach with the involvement of healthcare professionals and individuals with first-hand experience of living with the hereditary cancer syndromes.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>The family is the main source of information and emotional support to deal with hereditary cancer syndromes. Multiple individual adaptation processes and communal coping networks interact, influencing the emotional and health-related behavior of family members. This is affected and affects the family\u2019s communication and its\u2019 members reactions to disclosure, with consequent changes in relationships.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>The systemic interdependent dynamics of family adaptation calls for family-centered care of genetic cancer syndromes.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s12875-022-01704-z","type":"journal-article","created":{"date-parts":[[2022,4,23]],"date-time":"2022-04-23T10:02:49Z","timestamp":1650708169000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["\u201cI have always lived with the disease in the family\u201d: family adaptation to hereditary cancer-risk"],"prefix":"10.1186","volume":"23","author":[{"given":"Eliana","family":"Silva","sequence":"first","affiliation":[]},{"given":"Pedro","family":"Gomes","sequence":"additional","affiliation":[]},{"given":"Paula M.","family":"Matos","sequence":"additional","affiliation":[]},{"given":"Eunice R.","family":"Silva","sequence":"additional","affiliation":[]},{"given":"Jo\u00e3o","family":"Silva","sequence":"additional","affiliation":[]},{"given":"Catarina","family":"Brand\u00e3o","sequence":"additional","affiliation":[]},{"given":"Fernando","family":"Castro","sequence":"additional","affiliation":[]},{"given":"Maria Carolina","family":"Neves","sequence":"additional","affiliation":[]},{"given":"C\u00e9lia M. D.","family":"Sales","sequence":"additional","affiliation":[]}],"member":"297","published-online":{"date-parts":[[2022,4,23]]},"reference":[{"key":"1704_CR1","unstructured":"National Cancer Institute. The Genetics of Cancer - National Cancer Institute [Internet]. National Cancer Institute at the\u00a0U. S. National Institutes of Health. 2017. [cited 2021 Feb 22]. Available from:\u00a0https:\/\/www.cancer.gov\/about-cancer\/causes-prevention\/genetics."},{"key":"1704_CR2","doi-asserted-by":"crossref","unstructured":"American College of Obstetricians and Gynecologists. Hereditary cancer syndromes and risk assessment. Obstet Gynecol. 2019;134(6):e143\u20139.","DOI":"10.1097\/AOG.0000000000003562"},{"issue":"2","key":"1704_CR3","doi-asserted-by":"publisher","first-page":"223","DOI":"10.1038\/ajg.2014.435","volume":"110","author":"S Syngal","year":"2015","unstructured":"Syngal S, Brand RE, Church JM, Giardiello FM, Hampel HL, Burt RW. ACG clinical guideline: Genetic testing and management of hereditary gastrointestinal cancer syndromes. Am J Gastroenterol. 2015;110(2):223\u201362.","journal-title":"Am J Gastroenterol"},{"issue":"4","key":"1704_CR4","doi-asserted-by":"publisher","first-page":"492","DOI":"10.1017\/nws.2020.13","volume":"8","author":"CS Marcum","year":"2020","unstructured":"Marcum CS, Lea D, Eliezer D, Hadley DW, Koehly LM. The structure of emotional support networks in families affected by Lynch syndrome. Netw Sci. 2020;8(4):492\u2013507.","journal-title":"Netw Sci"},{"issue":"4","key":"1704_CR5","doi-asserted-by":"publisher","first-page":"925","DOI":"10.3390\/cancers13040925","volume":"13","author":"V Baroutsou","year":"2021","unstructured":"Baroutsou V, Underhill-Blazey ML, Appenzeller-Herzog C, Katapodi MC, Mok SC. Interventions facilitating family communication of genetic testing results and cascade screening in hereditary Breast\/Ovarian Cancer or Lynch Syndrome: a systematic review and meta-analysis. Cancers (Basel). 2021;13(4):925.","journal-title":"Cancers (Basel)"},{"key":"1704_CR6","doi-asserted-by":"publisher","first-page":"315","DOI":"10.1038\/ejhg.2015.174","volume":"24","author":"\u00c1 Mendes","year":"2016","unstructured":"Mendes \u00c1, Paneque M, Sousa L, Clarke A, Sequeiros J. How communication of genetic information within the family is addressed in genetic counselling: A systematic review of research evidence. Eur J Hum Genet. 2016;24:315\u201325.","journal-title":"Eur J Hum Genet"},{"issue":"6","key":"1704_CR7","doi-asserted-by":"publisher","first-page":"811","DOI":"10.1007\/s10897-007-9117-0","volume":"16","author":"C Carlsson","year":"2007","unstructured":"Carlsson C, Nilbert M. Living with hereditary non-polyposis colorectal cancer; experiences from and impact of genetic testing. J Genet Couns. 2007;16(6):811\u201320.","journal-title":"J Genet Couns"},{"issue":"3","key":"1704_CR8","doi-asserted-by":"publisher","first-page":"1603","DOI":"10.3390\/ijerph19031603","volume":"19","author":"P Gomes","year":"2022","unstructured":"Gomes P, Pietrabissa G, Silva E, Silva J, Matos PM, Costa ME, Bertuzzi V, Silva E, Neves MC, Sales CMD. Family adjustment to hereditary cancer syndromes: a systematic review. Int J Environ Res Public Health. 2022;19(3):1603.","journal-title":"Int J Environ Res Public Health"},{"key":"1704_CR9","doi-asserted-by":"crossref","unstructured":"Rolland JS, Williams JK. Toward a biopsychosocial model for 21st-century genetics. Fam Process. 2005;44(1):3\u201324.","DOI":"10.1111\/j.1545-5300.2005.00039.x"},{"issue":"3","key":"1704_CR10","doi-asserted-by":"publisher","first-page":"e002227","DOI":"10.1136\/bmjopen-2012-002227","volume":"3","author":"MJ Esplen","year":"2013","unstructured":"Esplen MJ, Cappelli M, Wong J, Bottorff JL, Hunter J, Carroll J, et al. Development and validation of a brief screening instrument for psychosocial risk associated with genetic testing: a pan-canadian cohort study. BMJ Open. 2013;3(3):e002227.","journal-title":"BMJ Open"},{"issue":"5","key":"1704_CR11","doi-asserted-by":"publisher","first-page":"778","DOI":"10.1007\/s10897-013-9682-3","volume":"23","author":"HV Petersen","year":"2014","unstructured":"Petersen HV, Nilbert M, Bernstein I, Carlsson C. Balancing life with an increased risk of cancer: Lived experiences in healthy individuals with Lynch syndrome. J Genet Couns. 2014;23(5):778\u201384.","journal-title":"J Genet Couns"},{"issue":"6","key":"1704_CR12","doi-asserted-by":"publisher","first-page":"936","DOI":"10.1002\/jgc4.1218","volume":"29","author":"G Campbell-Salome","year":"2020","unstructured":"Campbell-Salome G, Rauscher EA. Family storytelling about hereditary cancer: Framing shared understandings of risk. J Genet Couns. 2020;29(6):936\u201348.","journal-title":"J Genet Couns"},{"issue":"3","key":"1704_CR13","doi-asserted-by":"publisher","first-page":"341","DOI":"10.1002\/cncr.28879","volume":"121","author":"AM Hirschberg","year":"2015","unstructured":"Hirschberg AM, Chan-Smutko G, Pirl WF. Psychiatric implications of cancer genetic testing. Cancer. 2015;121(3):341\u201360.","journal-title":"Cancer"},{"issue":"10","key":"1704_CR14","doi-asserted-by":"publisher","first-page":"3647","DOI":"10.1007\/s00520-019-04918-7","volume":"27","author":"L Lombardi","year":"2019","unstructured":"Lombardi L, Bramanti SM, Babore A, Stuppia L, Trumello C, Antonucci I, et al. Psychological aspects, risk and protective factors related to BRCA genetic testing: A review of the literature. Support Care Cancer. 2019;27(10):3647\u201356.","journal-title":"Support Care Cancer"},{"issue":"1","key":"1704_CR15","doi-asserted-by":"publisher","first-page":"6","DOI":"10.1186\/1897-4287-10-6","volume":"10","author":"K Bartuma","year":"2012","unstructured":"Bartuma K, Nilbert M, Carlsson C. Family perspectives in Lynch syndrome becoming a family at risk, patterns of communication and influence on relations. Hered Cancer Clin Pract. 2012;10(1):6.","journal-title":"Hered Cancer Clin Pract"},{"issue":"3","key":"1704_CR16","doi-asserted-by":"publisher","first-page":"E142","DOI":"10.1097\/NCC.0000000000000796","volume":"44","author":"M Seven","year":"2021","unstructured":"Seven M, Shah LL, Daack-Hirsch S, Yazici H. Experiences of BRCA1\/2 gene mutation-positive women with cancer in communicating genetic risk to their relatives. Cancer Nurs. 2021;44(3):E142\u201350.","journal-title":"Cancer Nurs"},{"issue":"4","key":"1704_CR17","doi-asserted-by":"publisher","first-page":"691","DOI":"10.1007\/s10689-010-9380-3","volume":"9","author":"M Wiseman","year":"2010","unstructured":"Wiseman M, Dancyger C, Michie S. Communicating genetic risk information within families: a review. Fam Cancer. 2010;9(4):691\u2013703.","journal-title":"Fam Cancer"},{"issue":"5","key":"1704_CR18","doi-asserted-by":"publisher","first-page":"418","DOI":"10.1007\/s10897-009-9232-1","volume":"18","author":"HA Douglas","year":"2009","unstructured":"Douglas HA, Hamilton RJ, Grubs RE. The effect of BRCA gene testing on family relationships: a thematic analysis of qualitative interviews. J Genet Couns. 2009;18(5):418\u201335.","journal-title":"J Genet Couns"},{"key":"1704_CR19","doi-asserted-by":"publisher","unstructured":"Sales CMD, Gomes P, Silva ER, Silva J, Matos P. Family adaptation to genetic cancer risk interview: From genetic susceptibility testing to long-term risk management. 2019; Available from: https:\/\/doi.org\/10.5281\/zenodo.5006939","DOI":"10.5281\/zenodo.5006939"},{"key":"1704_CR20","doi-asserted-by":"publisher","unstructured":"Gomes P, Matos PM, Silva E, Silva J, Sales C. How staff and users shape TOGETHER: A participatory research on the psychosocial adaptation to genetic risk of cancer at IPO PORTO. In: International Conference of Person Centered Healthcare (ICPCH) [Internet]. Porto; 2019. Available from: https:\/\/doi.org\/10.5281\/zenodo.3909430.","DOI":"10.5281\/zenodo.3909430"},{"key":"1704_CR21","doi-asserted-by":"publisher","unstructured":"Gomes P, Matos PM, Silva E, Silva J, Costa ME, Bento MJ, et al. Researchers, practitioners, and users TOGETHER to study the psychosocial adjustment to genetic testing in the context of inherited cancer risk. In: International Conference on Person Centered Healthcare (ICPCH) [Internet]. Porto, Portugal; 2019. Available from: https:\/\/doi.org\/10.5281\/zenodo.3909459.","DOI":"10.5281\/zenodo.3909459"},{"issue":"2","key":"1704_CR22","doi-asserted-by":"publisher","first-page":"107","DOI":"10.1002\/capr.12165","volume":"18","author":"V Clarke","year":"2018","unstructured":"Clarke V, Braun V. Using thematic analysis in counselling and psychotherapy research: a critical reflection. Couns Psychother Res. 2018;18(2):107\u201310.","journal-title":"Couns Psychother Res"},{"key":"1704_CR23","doi-asserted-by":"publisher","first-page":"53","DOI":"10.1016\/S0065-2601(03)01002-5","volume":"35","author":"M Mikulincer","year":"2003","unstructured":"Mikulincer M, Shaver PR. The attachment behavioral system in adulthood: activation, psychodynamics, and interpersonal processes. Adv Exp Soc Psychol. 2003;35:53\u2013152.","journal-title":"Adv Exp Soc Psychol"},{"key":"1704_CR24","doi-asserted-by":"publisher","first-page":"13","DOI":"10.1016\/j.cpr.2018.12.001","volume":"68","author":"SN Almeida","year":"2019","unstructured":"Almeida SN, Elliott R, Silva ER, Sales CMD. Fear of cancer recurrence: A qualitative systematic review and meta-synthesis of patients\u2019 experiences. Clin Psychol Rev. 2019;68:13\u201324.","journal-title":"Clin Psychol Rev"},{"issue":"3","key":"1704_CR25","doi-asserted-by":"publisher","first-page":"222","DOI":"10.1016\/j.ijchp.2020.07.004","volume":"20","author":"M Rzeszutek","year":"2020","unstructured":"Rzeszutek M, Zawadzka A, Pi\u0119ta M, Houn A, Pankowski D, Kr\u0119cisz B. Profiles of resources and posttraumatic growth among cancer and psoriatic patients compared to non-clinical sample. Int J Clin Heal Psychol. 2020;20(3):222\u201331.","journal-title":"Int J Clin Heal Psychol"},{"issue":"3","key":"1704_CR26","doi-asserted-by":"publisher","first-page":"343","DOI":"10.1111\/1467-6427.12016","volume":"37","author":"\u00c1 Mendes","year":"2015","unstructured":"Mendes \u00c1, Chiquelho R, Santos TA, Sousa L. Supporting families in genetic counselling services: A psychoeducational multifamily discussion group for at-risk colorectal cancer families. J Fam Ther. 2015;37(3):343\u201360.","journal-title":"J Fam Ther"},{"issue":"4","key":"1704_CR27","doi-asserted-by":"publisher","first-page":"161","DOI":"10.1007\/s12687-010-0022-0","volume":"1","author":"\u00c1 Mendes","year":"2010","unstructured":"Mendes \u00c1, Chiquelho R, Santos TA, Sousa L. Family matters: Examining a multi-family group intervention for women with BRCA mutations in the scope of genetic counselling. J Community Genet. 2010;1(4):161.","journal-title":"J Community Genet"}],"container-title":["BMC Primary Care"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12875-022-01704-z.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s12875-022-01704-z\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12875-022-01704-z.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,4,23]],"date-time":"2022-04-23T10:04:04Z","timestamp":1650708244000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmcfampract.biomedcentral.com\/articles\/10.1186\/s12875-022-01704-z"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,4,23]]},"references-count":27,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2022,12]]}},"alternative-id":["1704"],"URL":"https:\/\/doi.org\/10.1186\/s12875-022-01704-z","relation":{},"ISSN":["2731-4553"],"issn-type":[{"value":"2731-4553","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,4,23]]},"assertion":[{"value":"12 October 2021","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"21 March 2022","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"23 April 2022","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Written informed consent was obtained by all study participants. The study was approved the by the IPO-PORTO hospital\u2019s ethical board (Doc. CES-IPOP04_2017) and all procedures were conducted in accordance with the Declaration of Helsinki.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare that they have no competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"93"}}