Are family-oriented interventions in Portuguese genetics services a remote possibility? Professionals’ views on a multifamily intervention for cancer susceptibility families

Abstract

This article examines genetics healthcare professionals' opinions about a multifamily psychoeducational programme for hereditary cancer susceptibility families, implemented at a Portuguese genetics service. Their views on how a family-oriented approach is envisioned to be incorporated in Portuguese genetic counselling services are also reported. Six focus groups and three individual interviews were undertaken comprising 30 professionals working in the provision of genetic counselling and genetic counsellor trainees. Participants were given a page-summary describing the intervention and asked to comment the strengths and limitations of the multifamily intervention. All interviews were fully transcribed and analysed using the constant comparison method. The qualitative analysis generated data comprising four thematic categories in relation to the professionals' views: (a) usefulness of the programme; (b) programme's methodological and practical obstacles; (c) genetics services constraints; and (d) suggestions for improving the programme and further family-oriented interventions. We reflect on the reported views examining the intervention, and on how current constraints of genetic services limit the provision of psychosocial support for cancer susceptibility families. The implications of these findings regarding the purpose of genetic counselling are discussed. Results may sensitise stakeholders and policy makers for the need to deliver family-based services in cancer genetic counselling, with adequate planning and collaborative involvement of different professionals.

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

“…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).…”

“…In some cases, the distress to patients caused HCPs to question whether doing the tests was worthwhile (Lobb et al 2001;Cox and Starzomski 2004;Al-Habsi et al 2008;Graves et al 2011;Mendes, Paneque, and Sousa 2012;Walsh et al 2012;Birmingham et al 2013;Mendes, Sousa, and Paneque 2013;Tan and Fitzgerald 2014).…”

“…[Genetics HCP, Portugal; Mendes, Sousa, and Paneque 2013, 776] The need for multidisciplinary support in the delivery of genetic risk information was often acknowledged, with many HCPs feeling that they were not equipped with the necessary specialist skills to support their patients (Lobb et al 2001;Carroll et al 2003;Bottorff et al 2005;Mendes, Paneque, and Sousa 2012;Mendes, Sousa, and Paneque 2013;Paneque et al 2014). …”

“…[Breast specialist, Japan; Komatsu and Yagasaki 2014, 42] HCPs also referred to the potential for patients to feel stigmatized or labelled as a result of receiving information about their genetic risk status (Cox and Starzomski 2004;Graves et al 2011;Mendes, Paneque, and Sousa 2012).…”

“…Genetic risk as a burden (T3; Q59-62) Genetic risk was frequently referred to as a burden (Rees et al 2006;Graves et al 2011;Kenen et al 2011;Mendes, Paneque, and Sousa 2012;Aasen and Skolbekken 2014;Paneque et al 2014) or associated with feelings of guilt (Lobb et al 2001;Carroll et al 2003;Cox and Starzomski 2004;Will, Armstrong, and Marteau 2010;Graves et al 2011). HCPs described patients feeling guilty for transmitting a heritable disease, or for being unaffected by a disease when other members of the family were affected.…”