{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,4,8]],"date-time":"2025-04-08T20:04:36Z","timestamp":1744142676619},"reference-count":57,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2013,8,30]],"date-time":"2013-08-30T00:00:00Z","timestamp":1377820800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2013,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Although available guidelines for familial cancer risk counseling clearly state the need to provide adequate psychosocial assessments and support, this feature of care is only available in part for individuals and families in oncogenetic counseling protocols in Portugal. The purpose of this study was to examine the psychosocial aspects of oncogenetic counseling provided by a sample of Portuguese genetics professionals. We sought to ascertain perceived need for the provision of psychosocial services and ways to enhance the psychosocial focus in service delivery. A qualitative study was designed; semi\u2010structured focus groups and individual interviews were performed with 30 professionals from Portuguese healthcare institutions where oncogenetic counseling is offered. Findings suggest: current practice is aligned with the teaching model, with a mainly information\u2010based focus; use of psychosocial counseling techniques and psychosocial support is limited throughout the genetic counseling timeline; there is a limited workforce of adequately trained psychosocial professionals, who are disadvantaged by structural and organizational constraints. These factors are considered to be serious barriers for psychosocial delivery. Development of multidisciplinary teams working in oncogenetics, and need for further counselling skills and training for genetics healthcare professionals were identified as priorities. Implications for practice and policy are discussed. Portuguese genetic counselors who have recently completed their training, may therefore contribute to enhanced psychosocial services delivery.<\/jats:p>","DOI":"10.1007\/s10897-013-9612-4","type":"journal-article","created":{"date-parts":[[2013,8,29]],"date-time":"2013-08-29T09:09:05Z","timestamp":1377767345000},"page":"771-783","source":"Crossref","is-referenced-by-count":8,"title":["From Constraints to Opportunities? Provision of Psychosocial Support in Portuguese Oncogenetic Counseling Services"],"prefix":"10.1002","volume":"22","author":[{"given":"\u00c1lvaro","family":"Mendes","sequence":"first","affiliation":[{"name":"Health, Family and Community Research Group, Department of Health Sciences University of Aveiro University Campus of Santiago Aveiro 3810\u2010093 Portugal"},{"name":"Centre for Predictive and Preventive Genetics, Institute of Molecular and Cell Biology (CGPP\u2010IBMC) University of Porto Rua do Campo Alegre, 823 Porto 4150\u2010180 Portugal"}]},{"given":"Liliana","family":"Sousa","sequence":"additional","affiliation":[{"name":"Health, Family and Community Research Group, Department of Health Sciences University of Aveiro University Campus of Santiago Aveiro 3810\u2010093 Portugal"}]},{"given":"Milena","family":"Paneque","sequence":"additional","affiliation":[{"name":"Centre for Predictive and Preventive Genetics, Institute of Molecular and Cell Biology (CGPP\u2010IBMC) University of Porto Rua do Campo Alegre, 823 Porto 4150\u2010180 Portugal"}]}],"member":"311","published-online":{"date-parts":[[2013,8,30]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1089\/gte.2004.8.240"},{"key":"e_1_2_7_3_1","first-page":"240","article-title":"Genetic counseling","volume":"27","author":"ASHG (American Society of Human Genetics Ad Hoc Committee on Genetic Counseling)","year":"1975","journal-title":"American Journal of Human Genetics"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1093\/jnci\/92.16.1345"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-006-9065-0"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-009-9243-y"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12687-011-0056-y"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-005-0519-6"},{"key":"e_1_2_7_9_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-010-9340-y"},{"key":"e_1_2_7_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2007.11.026"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-005-3660-3"},{"key":"e_1_2_7_12_1","doi-asserted-by":"publisher","DOI":"10.1017\/CBO9780511543746"},{"key":"e_1_2_7_13_1","doi-asserted-by":"publisher","DOI":"10.1007\/BF01408656"},{"key":"e_1_2_7_14_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.33385"},{"key":"e_1_2_7_15_1","volume-title":"The discovery of grounded theory","author":"Glaser B.","year":"1967"},{"key":"e_1_2_7_16_1","unstructured":"Guimar\u00e3es L. Sequeiros J. Skirton H. &Paneque M.(2013).What counts as effective genetic counselling for presymptomatic in late\u2010 onset disorders? A study of the consultand's perspective.Journal of Genetic Counseling.doi:10.1007\/s10897\u2010012\u20109561\u20103."},{"key":"e_1_2_7_17_1","volume-title":"Rede de referencia\u00e7\u00e3o hospitalar de gen\u00e9tica m\u00e9dica.","author":"Health General Directory","year":"2004"},{"key":"e_1_2_7_18_1","doi-asserted-by":"publisher","DOI":"10.1186\/bcr83"},{"key":"e_1_2_7_19_1","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2296-12-5"},{"key":"e_1_2_7_20_1","doi-asserted-by":"publisher","DOI":"10.1007\/BF01408634"},{"key":"e_1_2_7_21_1","doi-asserted-by":"publisher","DOI":"10.1023\/A:1025676205440"},{"issue":"1","key":"e_1_2_7_22_1","first-page":"S360","article-title":"The role of genetic counselling in the prevention of hereditary haemochromatosis: the perception of health professionals requesting HFE genotyping in Portugal","volume":"20","author":"Leandro B.","year":"2012","journal-title":"European Journal of Human Genetics"},{"key":"e_1_2_7_23_1","doi-asserted-by":"publisher","DOI":"10.1023\/A:1015279123108"},{"key":"e_1_2_7_24_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.ejhg.5201874"},{"key":"e_1_2_7_25_1","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.40.5.e56"},{"key":"e_1_2_7_26_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pop.2004.04.003"},{"key":"e_1_2_7_27_1","doi-asserted-by":"publisher","DOI":"10.1023\/A:1016628408498"},{"key":"e_1_2_7_28_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-006-9046-3"},{"key":"e_1_2_7_29_1","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2010.160"},{"key":"e_1_2_7_30_1","doi-asserted-by":"publisher","DOI":"10.1007\/0-387-21774-6_2"},{"key":"e_1_2_7_31_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-007-9113-4"},{"key":"e_1_2_7_32_1","doi-asserted-by":"publisher","DOI":"10.1177\/1359105302007002454"},{"key":"e_1_2_7_33_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-008-9173-0"},{"key":"e_1_2_7_34_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10689-012-9514-x"},{"key":"e_1_2_7_35_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12687-010-0022-0"},{"key":"e_1_2_7_36_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2008.03.035"},{"key":"e_1_2_7_37_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12687-010-0030-0"},{"issue":"1","key":"e_1_2_7_38_1","first-page":"S431","article-title":"Impact of genetic counselling on reproductive planning of couples in families with myotonic dystrophy type 1","volume":"20","author":"Nunes R.","year":"2012","journal-title":"European Journal of Human Genetics"},{"issue":"1","key":"e_1_2_7_39_1","first-page":"S49","article-title":"MPAG \u2010 first steps of a competences\u2010centred programme for genetic counselors in Portugal","volume":"18","author":"Paneque M.","year":"2010","journal-title":"European Journal of Human Genetics"},{"key":"e_1_2_7_40_1","doi-asserted-by":"publisher","DOI":"10.1089\/gtmb.2011.0023"},{"key":"e_1_2_7_41_1","first-page":"85","volume-title":"Research methods in family therapy","author":"Piercy F.","year":"2005"},{"key":"e_1_2_7_42_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-006-9048-1"},{"key":"e_1_2_7_43_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.ejhg.5201983"},{"issue":"4","key":"e_1_2_7_44_1","first-page":"269","article-title":"Defining and redefining the scope and goals of genetic counseling","volume":"142","author":"Resta R. G.","year":"2006","journal-title":"American Journal of Human Genetics"},{"key":"e_1_2_7_45_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-005-9014-3"},{"key":"e_1_2_7_46_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-011-9462-x"},{"issue":"1","key":"e_1_2_7_47_1","first-page":"S430","article-title":"Non\u2010syndromic neurosensorial prelingual deafness: the importance of genetic counseling in demystifying parents' beliefs about the cause of their children's deafness","volume":"20","author":"Rodrigues F.","year":"2012","journal-title":"European Journal of Human Genetics"},{"key":"e_1_2_7_48_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1545-5300.2005.00039.x"},{"key":"e_1_2_7_49_1","volume-title":"Counseling about cancer: Strategies for genetic counseling","author":"Schneider K. A.","year":"2002"},{"issue":"1","key":"e_1_2_7_50_1","first-page":"S92","article-title":"Ten years of a programme for presymptomatic testing (PST) and prenatal diagnosis (PND) in late\u2010onset neurological diseases in Portugal: Machado\u2010Joseph disease (MJD), Huntington disease (HD) and familial amyloid neuropathy type I \u2010 ATTRV30M (FAP\u2010I)","volume":"14","author":"Sequeiros J.","year":"2006","journal-title":"European Journal of Human Genetics"},{"key":"e_1_2_7_51_1","doi-asserted-by":"publisher","DOI":"10.1891\/rtnp.17.4.339.53195"},{"key":"e_1_2_7_52_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12687-010-0024-y"},{"key":"e_1_2_7_53_1","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2010.64"},{"key":"e_1_2_7_54_1","volume-title":"Basic of qualitative research: Techniques and procedures for developing grounded theory","author":"Strauss A.","year":"1998"},{"key":"e_1_2_7_55_1","volume-title":"Examining outcomes in community care: Report on focus groups \u2013 Social Policy Research Unit working paper.","author":"Unell J.","year":"1997"},{"key":"e_1_2_7_56_1","doi-asserted-by":"crossref","DOI":"10.1093\/oso\/9780195120660.001.0001","volume-title":"Psychosocial genetic counseling","author":"Weil J.","year":"2000"},{"key":"e_1_2_7_57_1","doi-asserted-by":"publisher","DOI":"10.1023\/A:1023234802124"},{"key":"e_1_2_7_58_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10689-010-9326-9"}],"container-title":["Journal of Genetic Counseling"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1007\/s10897-013-9612-4","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,5,17]],"date-time":"2024-05-17T12:07:35Z","timestamp":1715947655000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1007\/s10897-013-9612-4"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2013,8,30]]},"references-count":57,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2013,12]]}},"alternative-id":["10.1007\/s10897-013-9612-4"],"URL":"https:\/\/doi.org\/10.1007\/s10897-013-9612-4","archive":["Portico"],"relation":{},"ISSN":["1059-7700","1573-3599"],"issn-type":[{"value":"1059-7700","type":"print"},{"value":"1573-3599","type":"electronic"}],"subject":[],"published":{"date-parts":[[2013,8,30]]}}}