Families’ experience of oncogenetic counselling: accounts from a heterogeneous hereditary cancer risk population

Abstract

This paper reports the results of semi-structured family interviews conducted with a purposive sample of nine families (comprising 50 individuals) involved in cancer genetic counselling at a Portuguese public hospital. Qualitative analysis resulted in thematic categories illustrating: (1) how families go through cancer genetic counselling (eliciting risk awareness, the motivators, risk management, the psychosocial context of familial engagement in genetic counselling, and the familial pathways of cancer risk tracking); and (2) how families incorporate genetic risk into family life (strategies for family resilience, and the meanings and values that permeate the experience). Families have recognised the value of genetic counselling in enabling participants to take measures to confront disease risk; however, the experience was dominated by distressing feelings. A set of ethical-relational principles guided the experience. Familial experiences on genetic counselling and tracking of cancer susceptibility encompass a sense of trajectory that takes the form of an historical and intergenerational narrative process, linking past, present and possible futures. Such process implies an ongoing set of individual and interactional experiences taking place over time. Specific changes associated with the illness timeline and with individual and family developmental lifespan transitions are thus acknowledged. These results may help genetics healthcare practitioners understand how families perceive, respond to and accommodate cancer risk counselling, and thus illuminate family-oriented tenets for planning and practice.

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

“…The overall findings allow important and timely reflection on the provision of genetic counseling in Portugal and its effectiveness as the first generation of Portuguese genetic counselors is ready for integration in public healthcare services. The study adds to the growing body of research on psychosocial genetics at national level (Guimarães et al 2013;Leandro et al 2012;Mendes et al 2010;Mendes and Sousa 2012;Nunes et al 2012;Paneque et al 2012;Rodrigues et al 2012).…”

Resilience Among Patients Across the Cancer Continuum

“…Among 71 families with hereditary colorectal cancer, baseline hope has been associated with reduced distress (Ho, Ho, Bonanno, Chu, & Chan, 2010). Members of families with known genetic susceptibility to cancer have reported that baseline spirituality and adoption of optimism and mechanisms of social support encourage greater self-care and, ultimately, enable inner strength for individuals and their families (Mendes & Sousa, 2012). …”

Promoção da saúde em famílias com paramiloidose: papéis dos mais velhos junto dos mais novos

“…O acesso à história médica da família é importante na avaliação do risco genético individual. Os familiares mais velhos têm sido descritos como "guardiões da história médica da família" pelo conhecimento privilegiado de circunstâncias de saúde de antepassados aos quais não é possível aceder (porque já morreram ou estão muito incapacitados) 12 .…”