From Constraints to Opportunities? Provision of Psychosocial Support in Portuguese Oncogenetic Counseling Services

Abstract

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.

Healthcare professionals’ perceptions of risk in the context of genetic testing for the prediction of chronic disease: a qualitative metasynthesis

“…[Physician, Canada;Bottorff et al 2000Bottorff et al , 1453 A level of uncertainty surrounding genetic information was also felt by HCPs. Some HCPs expressed reservations about their own understanding and confidence in genetic risk assessment (Elwyn, Iredale, and Gray 2002;Carroll et al 2003;Al-Habsi et al 2008;Graves et al 2011;Kenen et al 2011;Birmingham et al 2013;Mendes, Sousa, and Paneque 2013;Tan and Fitzgerald 2014 Birmingham et al 2003, 7] However, despite reservations about their own knowledge, HCPs clearly saw their own understanding of genetic risk as being qualitatively different, and superior to, the understanding of members of the public. Professional understanding is described in terms of precise, quantitative estimates, whereas public understanding is described in vague, experiential terms (Overby et al 2013).…”

“…HCPs described making judgements about how these factors affect the level of understanding. Furthermore, depending on the level of understanding and motives for undergoing testing HCPs would modify their approach to match the perceived needs of the patient (Lobb et al 2001;Pfeffer, Veach, and LeRoy 2003;Cox and Starzomski 2004;Stermer et al 2004;Rees et al 2006;Will, Armstrong, and Marteau 2010;Yamanaka and Takeda 2011;Mendes, Paneque, and Sousa 2012;Mendes, Sousa, and Paneque 2013;Overby et al 2013;Aasen and Skolbekken 2014;Paneque et al 2014).…”

“…Family background, particularly personal experience of a disease, and cultural background were frequently cited as important determinants of a patient's understanding of and responses to genetic risk (Lobb et al 2001;Carroll et al 2003;Cox and Starzomski 2004;Graves et al 2011;Overby et al 2013;Aasen and Skolbekken 2014;Tan and Fitzgerald 2014 Sociocultural influences (Cox and Starzomski 2004;Graves et al 2011;Mendes, Sousa, and Paneque 2013) and media influences (Bottorff et al 2000;Elwyn, Iredale, and Gray 2002;Carroll et al 2003;Kenen et al 2011) were cited by HCPs in several of the articles included in this analysis as important determinants of public perceptions of risk.…”

“…[Genetic counsellor, USA; Overby et al 2013, 244] The use of supplementary sources of information was often mentioned, especially accessible informational resources that patients could take away and read in their own time (Elwyn, Iredale, and Gray 2002;Pfeffer, Veach, and LeRoy 2003;Cox and Starzomski 2004;Rees et al 2006;Mendes, Sousa, and Paneque 2013;Paneque et al 2014;Tan and Fitzgerald 2014).…”

“…Give them easy to read information that they can take home with them. [Nurse, Canada;Cox and Starzomski 2004, 147] Other suggestions for effective communication to enhance patients' understanding of genetic risk included the acknowledgement of specific cultural beliefs and practices , helping patients to express themselves (Mendes, Sousa, and Paneque 2013) and honest involvement of patients in the associated uncertainty (Kenen et al 2011).…”