Mendes Alvaro, Sousa Liliana, Paneque Milena
Health, Family and Community Research Group, Department of Health Sciences, University of Aveiro, University Campus of Santiago, 3810-093, Aveiro, Portugal,
J Genet Couns. 2013 Dec;22(6):771-83. doi: 10.1007/s10897-013-9612-4. Epub 2013 Aug 30.
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-structured 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-based 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.
尽管现有的家族性癌症风险咨询指南明确指出需要提供充分的心理社会评估和支持，但在葡萄牙的肿瘤遗传学咨询方案中，这一护理特点仅部分适用于个人和家庭。本研究的目的是调查葡萄牙遗传学专业人员样本提供的肿瘤遗传学咨询的心理社会方面。我们试图确定提供心理社会服务的感知需求以及加强服务提供中心理社会重点的方法。设计了一项定性研究；对葡萄牙提供肿瘤遗传学咨询的医疗机构的30名专业人员进行了半结构化焦点小组和个人访谈。研究结果表明：当前的做法与教学模式一致，主要侧重于提供信息；在整个遗传咨询过程中，心理社会咨询技术和心理社会支持的使用有限；经过充分培训的心理社会专业人员数量有限，他们受到结构和组织限制的不利影响。这些因素被认为是心理社会服务提供的严重障碍。确定了组建肿瘤遗传学多学科团队以及为遗传学医疗专业人员提供进一步咨询技能和培训的必要性为优先事项。讨论了对实践和政策的影响。因此，最近完成培训的葡萄牙遗传咨询师可能有助于加强心理社会服务的提供。
