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.
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Notes
All participants’ names have been changed for confidentiality purposes.
References
Cappelli M, Esplen MJ, Wilson B, Dorval M, Bottorff J, Ly M, Carroll J et al (2009) Identifying mental health services in clinical genetic settings. Clin Genet 76(4):326–331
Chiquelho R, Neves S, Mendes Á, Relvas A, Sousa L (2010) Pro-families: a psycho-educational multifamily group intervention for cancer patients and their families. Eur J Cancer Care. doi:10.1111/j.1365-2354.2009.01154.x
Douma KFL, Aaronson NK, Vasen HFA, Bleiker EMA (2008) Psychosocial issues in genetic testing for familial adenomatous polyposis: a review of the literature. Psychooncology 17:737–745
Esplen M, Hunter J, Leszcz M, Warner E, Narod S, Metcalfe K et al (2004) A multicenter study of supportive–expressive group therapy for women with BRCA1/BRCA2 mutations. Cancer 101:2327–2340
Evers-Kiebooms G, Welkenhysen M, Claes E, Decruyenaere M, Denayer L (2000) The psychological complexity of predictive testing for late onset neurogenetic diseases and hereditary cancers. Soc Sci Med 51:831–841
Gonzalez S, Steinglass P (2002) Application of multifamily groups in chronic medical disorders. In: McFarlane W (ed) Multifamily groups in the treatment of severe psychiatric disorders. Guilford, New York
Health General Directory (2004) Rede de referenciação hospitalar de genética médica. Direcção-Geral da Saúde, Lisboa
Karp J, Brown K, Sullivan M, Massie M (1999) The prophylactic mastectomy dilemma: a support group for women at high genetic risk for breast cancer. J Genet Couns 8(3):163–173
Krueger R, Casey M (2000) Focus groups. Sage, Thousand Oaks
McAllister M, Payne K, Nicholls S, McLeod R, Donnai D, Davies L (2007) Improving service evaluation in clinical genetics: identifying effects of genetic diseases on individuals and families. J Genet Couns 16(1):71–83
McDaniel S (2005) The psychotherapy of genetics. Fam Proc 44(1):25–44
McDaniel S, Campbell T, Hepworth J, Lorenz A (2005) Family-oriented primary care. Springer, New York
McDaniel S, Rolland J, Feetham S, Miller S (2006) It runs in the family: family system concepts and genetically linked disorders. In: Miller S, McDaniel S, Rolland J, Feetham S (eds) Individuals, families, and the new era of genetics. Norton, New York
Mendes Á, Santos TA, Sousa L (2010) Experiencing genetic counselling for hereditary cancers: the client’s perspective. Eur J Cancer Care. doi:10.1111/j.1365-2354.2010.01201.x
National Society of Genetic Counselors (2006) Fact sheet for the NSGC. http://www.nsgc.org/news/mediakit/factsheet.cfm
Ostroff J, Ross S, Steinglass P, Ronis-Tobin V, Singh B (2004) Interest in and barriers to participation in multiple groups among head and neck cancer survivors and their primary family caregiver. Fam Proc 43(2):195–208
Pasacreta J (2003) Psychosocial issues associated with genetic testing for breast and ovarian cancer risk: an integrative review. Cancer Investig 21(4):588–623
Patenaude A (2005) Genetic testing for cancer: psychological approaches for helping patients and families. American Psychological Association, Washington, DC
Patterson J, Garwick A (1994) The impact of chronic illness on families: a family systems perspective. Ann Behav Med 16:131–142
Peterson S (2005) The role of the family in genetic testing: theoretical perspectives, current knowledge, and future directions. Health Educ Behav 32(5):627–639
Piercy F, Hertlein K (2005) Focus groups in family therapy research. In: Sprankle D, Piercy F (eds) Research methods in family therapy. Guilford, New York
Ransom S, Azzarello L, McMillan S (2006) Methodological issues in the recruitment of cancer pain patients and their caregivers. Res Nurs Health 29(3):190–198
Rolland J, Williams J (2006) Toward a psychosocial model for the new era of genetics. In: Miller S, McDaniel S, Rolland J, Feetham S (eds) Individuals, families, and the new era of genetics. Norton, New York
Schlich-Bakker K, Ten Kroode H, Ausems M (2006) A literature review of the psychological impact of genetic testing on breast cancer patients. Patient Educ Couns 62(1):13–20
Sifri R, Gangadharappa S, Acheson L (2004) Identifying and testing for hereditary susceptibility to common cancers. Cancer J Clinic 54(6):309–326
Sobel S, Cowan D (2000) The process of family reconstruction after DNA testing for Huntington disease. J Genet Couns 9(3):237–251
Speice J, McDaniel S, Rowley P, Loader S (2002) Family issues in a psychoeducation group for women with a BRCA mutation. Clin Genet 62:121–127
Trees A, Koenig Kellas J, Roche M (2010) Family narratives. In: Gaff C, Bylund C (eds) Family communication about genetics. Oxford University Press, New York
Werner-Lin A (2008) Formal and informal support needs of young women with BRCA mutations. J Psychosoc Oncol 26(4):111–133
Acknowledgements
This work was supported by the Foundation for Science and Technology (SFRH/BD/38773/2007). The authors express gratitude to participant families, who made possible this study, and appreciate the valuable support from the Hereditary Tumours Consultation staff, Centre for Medical Genetics and Human Reproduction of the University Hospital of Coimbra, Portugal, in particular to Odete Albuquerque for help in recruiting study participants. Thanks to Milena Paneque for providing data about how genetics services are organized in Portugal.
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Mendes, Á., Chiquelho, R., Santos, T.A. et al. Family matters: examining a multi-family group intervention for women with BRCA mutations in the scope of genetic counselling. J Community Genet 1, 161–168 (2010). https://doi.org/10.1007/s12687-010-0022-0
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DOI: https://doi.org/10.1007/s12687-010-0022-0