Family matters: examining a multi-family group intervention for women with BRCA mutations in the scope of genetic counselling

Abstract

The availability of family-centred services for women genetically at-risk for breast and ovarian cancer (BRCA) due to deleterious genetic mutations is still scarce, despite the distress that these women and their families may experience. This study describes a multi-family group intervention for women who tested positive for BRCA mutations and their families. Methods include a time-limited psycho-educational programme involving educational and support components and consisting of four semi-structured multi-family sessions. Three families (a total of nine people) attended the programme in genetic counselling for hereditary cancers at a Portuguese public hospital. A focus group interview was performed 1 month after the last session to assess both the practical and the psychosocial impacts and to collect suggestions from participants. The present paper focuses on the practical aspects of the intervention, its development and its evaluation. Participants reported that the programme is well-structured and that responds to the needs of patients and their families by improving coping skills and medical awareness in the adaptation to genetic illness. Results reinforce the need to integrate psychosocial and family-oriented interventions in genetic counselling, addressing the holistic experience of hereditary disease. Recommendations for enhancing the services available are provided. The multi-family discussion group, combining educative and supportive services with a family focus, can be successfully adapted in genetic counselling protocols.

Talking across generations: Family communication aboutBRCA1andBRCA2genetic cancer risk

“…However, the current study and other research (Healey et al, ) suggest that while such methods assist in ensuring families are aware of their cancer risk, family dynamics and communication patterns influence whether relatives are informed. Interventions to support parents and families with communicating genetic risk have been developed (Bodurtha et al, ; Hodgson et al, ; Mendes, Chiquelho, Santos, & Sousa, ; Santerre‐Theil et al, ). Further evaluation is needed on the application of interventions in standard clinical practice, and approaches that are more inclusive of the extended family and with young adult children are needed.…”

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

“…The positive endorsement from participating families (Mendes et al 2010;2012) parallels the professionals' views on the usefulness of the programme. However, despite the growing awareness of the need for a family-focused approach in the scope of increased genetic susceptibility, some barriers may contribute to explain the paucity of time-extended group interventions.…”

“…Moreover, while other interventions generally took a quantitative evaluation from participants, our study qualitatively analysed genetic health professionals' views on the programme and how they envisage the incorporation of a familyorientated approach into genetic counselling services. Since participant families' views on the adequacy of the programme concerning its structure and contents were previously addressed (Mendes et al 2010(Mendes et al , 2012, in this study, we pursued to refine the programme's evaluation through an inter-professional reflective process. To our knowledge, this is the first study to report the evaluation of a psychosocial intervention from the healthcare professionals' perspective.…”

“…An email was sent to the directors of seven medical genetics departments of major and regional hospitals and of three oncological hospitals. The email included an invitation to the genetics healthcare teams to take part in a focus group interview aiming to explore their views on a previously implemented multifamily intervention for at-risk cancer families (Mendes et al 2010(Mendes et al , 2012; professionals from different backgrounds were eligible to participate. From the ten contacted institutions, two declined to participate; motives were not explored due to ethical reasons.…”

“…The programme design, implementation and evaluation are described elsewhere (Mendes et al 2010(Mendes et al , 2012. Its aim was to assist at-risk families in coping with the ongoing demands of increased genetic risk for hereditary cancers during the post-test period, combining educational and supportive services with a family focus.…”