To tell or not to tell: Barriers and facilitators in family communication about genetic risk

Authors: Forrest, K., Simpson, S.A., Wilson, B.J., van Teijlingen, E.R., McKee, L., Haites, N. and Matthews, E.

Journal: Clinical Genetics

Volume: 64

Issue: 4

Pages: 317-326

ISSN: 0009-9163

DOI: 10.1034/j.1399-0004.2003.00142.x

Abstract:

Communication about genetic risk in families is an important issue for genetic counsellors. The objective of this study was to explore the barriers and facilitators in family communication about genetic risk. Semi-structured interviews were undertaken with patients in the Northeast of Scotland who had attended genetic counselling for risk of hereditary breast and ovarian cancer and Huntington's disease, and with some spouses/partners. The interviews confirmed that the issue of disclosure was a problem for some, and that there were generic communication issues common to both groups. Telling family members about genetic risk was generally seen as a family responsibility and family structures, dynamics and 'rules' influenced disclosure decisions. A sense of responsibility towards younger generations was also important. The level of certainty felt by a person in relation to his or her own risk estimate also influenced what he or she could tell other family members. Communication within a family about genetic risk is a complex issue and is influenced by both pre-existing familial and cultural factors and individuals' responses to risk information. If genetic counsellors understood how these factors operate in individual families they might be able to identify effective strategies to promote considered decisions and prevent unnecessary emotional distress.

Source: Scopus

To tell or not to tell: barriers and facilitators in family communication about genetic risk.

Authors: Forrest, K., Simpson, S.A., Wilson, B.J., van Teijlingen, E.R., McKee, L., Haites, N. and Matthews, E.

Journal: Clin Genet

Volume: 64

Issue: 4

Pages: 317-326

ISSN: 0009-9163

DOI: 10.1034/j.1399-0004.2003.00142.x

Abstract:

Communication about genetic risk in families is an important issue for genetic counsellors. The objective of this study was to explore the barriers and facilitators in family communication about genetic risk. Semi-structured interviews were undertaken with patients in the Northeast of Scotland who had attended genetic counselling for risk of hereditary breast and ovarian cancer and Huntington's disease, and with some spouses/partners. The interviews confirmed that the issue of disclosure was a problem for some, and that there were generic communication issues common to both groups. Telling family members about genetic risk was generally seen as a family responsibility and family structures, dynamics and 'rules' influenced disclosure decisions. A sense of responsibility towards younger generations was also important. The level of certainty felt by a person in relation to his or her own risk estimate also influenced what he or she could tell other family members. Communication within a family about genetic risk is a complex issue and is influenced by both pre-existing familial and cultural factors and individuals' responses to risk information. If genetic counsellors understood how these factors operate in individual families they might be able to identify effective strategies to promote considered decisions and prevent unnecessary emotional distress.

Source: PubMed

To tell or not to tell: barriers and facilitators in family communication about genetic risk

Authors: Forrest, K., Simpson, S.A., Wilson, B.J., van Teijlingen, E.R., McKee, L., Haites, N. and Matthews, E.

Journal: CLINICAL GENETICS

Volume: 64

Issue: 4

Pages: 317-326

ISSN: 0009-9163

DOI: 10.1034/j.1399-0004.2003.00142.x

Source: Web of Science (Lite)

To tell or not to tell: Barriers and facilitators in family communication about genetic risk

Authors: Forrest, K., Simpson, S.A., Wilson, B.J., van Teijlingen, E., McKee, L., Haites, N. and Matthews, E.

Journal: Clinical Genetics

Volume: 64

Pages: 317-326

ISSN: 0009-9163

DOI: 10.1034/j.1399-0004.2003.00142.x

Abstract:

Communication about genetic risk in families is an important issue for genetic counsellors. The objective of this study was to explore the barriers and facilitators in family communication about genetic risk. Semi-structured interviews were undertaken with patients in the Northeast of Scotland who had attended genetic counselling for risk of hereditary breast and ovarian cancer and Huntington's disease, and with some spouses/partners. The interviews confirmed that the issue of disclosure was a problem for some, and that there were generic communication issues common to both groups. Telling family members about genetic risk was generally seen as a family responsibility and family structures, dynamics and 'rules' influenced disclosure decisions. A sense of responsibility towards younger generations was also important. The level of certainty felt by a person in relation to his or her own risk estimate also influenced what he or she could tell other family members. Communication within a family about genetic risk is a complex issue and is influenced by both pre-existing familial and cultural factors and individuals' responses to risk information. If genetic counsellors understood how these factors operate in individual families they might be able to identify effective strategies to promote considered decisions and prevent unnecessary emotional distress.

Source: Manual

Preferred by: Edwin van Teijlingen

To tell or not to tell: barriers and facilitators in family communication about genetic risk.

Authors: Forrest, K., Simpson, S.A., Wilson, B.J., van Teijlingen, E.R., McKee, L., Haites, N. and Matthews, E.

Journal: Clinical genetics

Volume: 64

Issue: 4

Pages: 317-326

eISSN: 1399-0004

ISSN: 0009-9163

DOI: 10.1034/j.1399-0004.2003.00142.x

Abstract:

Communication about genetic risk in families is an important issue for genetic counsellors. The objective of this study was to explore the barriers and facilitators in family communication about genetic risk. Semi-structured interviews were undertaken with patients in the Northeast of Scotland who had attended genetic counselling for risk of hereditary breast and ovarian cancer and Huntington's disease, and with some spouses/partners. The interviews confirmed that the issue of disclosure was a problem for some, and that there were generic communication issues common to both groups. Telling family members about genetic risk was generally seen as a family responsibility and family structures, dynamics and 'rules' influenced disclosure decisions. A sense of responsibility towards younger generations was also important. The level of certainty felt by a person in relation to his or her own risk estimate also influenced what he or she could tell other family members. Communication within a family about genetic risk is a complex issue and is influenced by both pre-existing familial and cultural factors and individuals' responses to risk information. If genetic counsellors understood how these factors operate in individual families they might be able to identify effective strategies to promote considered decisions and prevent unnecessary emotional distress.

Source: Europe PubMed Central