Developing genetic counseling for male BRCA1/2 mutation carriers based on their own experiences

Abstract

Background: Previous studies of genetic counseling (GC) for male BRCA1/2 mutation carriers have focused on their level of satisfaction with the GC and its content. The aim of this study was to examine the GC experiences of male BRCA1/2 mutation carriers, and their suggestions for improving GC, more broadly. Methods: Data were collected by themed interviews of Finnish male BRCA1/2 mutation carriers (n = 31), and subjected to inductive content analysis. Results: The results indicated that the participants had a mixture of both positive and negative experiences of GC regarding operational conditions at Departments of Clinical Genetics (DCGs) and the ability of the counselors' (clinical geneticists or genetic nurses) to provide GC. Although the GC was implemented in a professional manner, according to the male participants, more concreate and illustrative information should be provided, and the counselors should receive additional training to provide such information and improve their communication skills. Conclusions: Based on results of the study we make some suggestions for tailored GC for male BRCA1/2 mutation carriers. The results may facilitate development of a tentative model of GC that could be extended to broader categories of people at risk of hereditary cancer syndromes in the future.

Identification as a Mutation Carrier and Effects on Life According to Experiences of Finnish Male BRCA1/2 Mutation Carriers

“…There were also expressions that identification as a carrier induced no adverse reactions, as it merely seemed to be like a feature of the participants. Our previous findings (Kajula et al 2017) highlighted needs for post-test genetic counseling and individual psychosocial support for the male carriers in various life situations. The present study and several others (Liede et al 2000;Shiloh et al 2013) have shown that responses to genetic test results are highly individual, and there may be wide ranges in variables such as the processing timing and duration.…”

“…Finally, findings from our study and previous studies (Kajula et al 2016(Kajula et al , 2017 could be used to develop a tentative model of genetic counseling for male BRCA1/2 mutation carriers, tested with members of this population.…”

“…Thus, broader and more detailed information about experiences of male carriers is required, particularly as genetic counseling is recommended for patients with risks of hereditary cancer syndromes (EuroGentest 2008;National Society of Genetic Counselors' Definition Task Force et al 2006;Trepanier et al 2004), and several studies have highlighted needs for psychosocial support during such counseling (Kajula et al 2016(Kajula et al , 2017Mendes et al 2011). Moreover, a Finnish study has shown that genetic counseling for male BRCA1/2 mutation carriers by healthcare professionals should take account of the individual counselees' psychosocial needs and emotional responses to results of genetic tests (Kajula et al 2017). Hence, the main objective of the study presented here was to acquire broader and richer information about experiences of male BRCA1/2 mutation carriers that could be used to tailor genetic counseling for them.…”

Intensive care professionals' perceptions of the quality of counselling provided in the ICU: A cross‐sectional study

“…Information provided in the adult intensive care unit (ICU) setting falls under patient and family member counselling, which is a broad term for the education, guidance, tips, and information that patients and their family members receive from intensive care professionals (ICPs). 1,2 In this study, counselling concerns the mutual interactions between patients and family members and ICPs, whereas information only concerns relevant materials and explanations received by patients from ICPs. The counselling provided to adult ICU patients and their family members by ICPs can be described based on the content, implementation, benefits and resources.…”

“…The counselling provided to adult ICU patients and their family members by ICPs can be described based on the content, implementation, benefits and resources. [1][2][3][4] ICU patients and their family members need good quality counselling to both adapt to the distressing situation during intensive care and recover from it. Provided counselling is based on the patients' and family members' needs and, as such, the ICPs' background and competence are key factors in determining the quality of provided counselling.…”