Family communication, genetic testing and colonoscopy screening in hereditary non‐polyposis colon cancer: a qualitative study

McCann, Siobhan; MacAuley, Domhnall; Barnett, Yvonne; Bunting, Brendan; Bradley, Aoife; Jeffers, Lisa; Morrison, Patrick J.

doi:10.1002/pon.1487

Cited by 51 publications

(50 citation statements)

References 49 publications

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“…Elsewhere, family communication has been shown to promote screening and healthy life-style changes (Korhonen, Uutela, Korhonen, & Puska, 1998; McCann et al, 2009). Although most instances of Open/Supportive communication about ARD likely have the potential to be beneficial, lay interpersonal health communication can be risk promoting (Cline, 2003).…”

Section: Discussionmentioning

confidence: 99%

A Typology of Communication Dynamics in Families Living a Slow-Motion Technological Disaster

Orom

Cline

Hernandez

et al. 2012

Journal of Family Issues

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With increasing numbers of communities harmed by exposures to toxic substances, greater understanding of the psychosocial consequences of these technological disasters is needed. One community living the consequences of a slow-motion technological disaster is Libby, Montana, where, for nearly 70 years, amphibole asbestos-contaminated vermiculite was mined and processed. Former mine employees and Libby area residents continue to cope with the health consequences of occupational and environmental asbestos exposure and with the psychosocial challenges accompanying chronic and often fatal asbestos-related diseases (ARD). Nine focus groups were conducted with Libby area residents. Transcripts were analyzed to explore patterns of family communication about ARD. The following five patterns emerged: Open/Supportive, Silent/Supportive, Open/Conflictual, Silent/Conflictual, and Silent/Denial. Open/Supportive communication included encouragement to be screened for ARD, information about ARD and related disaster topics, and emotional support for people with ARD. In contrast, communication patterns characterized by silence or conflict have the potential to hinder health-promoting communication and increase psychological distress.

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Section: Discussionmentioning

confidence: 99%

A Typology of Communication Dynamics in Families Living a Slow-Motion Technological Disaster

Orom

Cline

Hernandez

et al. 2012

Journal of Family Issues

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“…Although studies have documented whether and which family members are informed of test results (e.g., McCann et al, 2009; Tercyak et al, 2001; Tercyak et al, 2002), and the effect that receiving this has on adolescent daughters (e.g., Bradbury et al, 2009; Cappelli et al, 2005), little research has explored the actual conversations that take place between clinicians and mothers about if, when, and how this information should be communicated to their daughters. This study seeks to fill this gap by analyzing 1) transcribed recordings of conversations between women attending genetic counseling and clinicians about communicating this information to their adolescent daughters and 2) follow-up letters summarizing their genetic status.…”

Section: Introductionmentioning

confidence: 99%

What Women with Breast Cancer Discuss with Clinicians About Risk for Their Adolescent Daughters

Maloney

Edgerson

Offit

et al. 2012

Journal of Psychosocial Oncology

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Recorded conversations between women undergoing BRCA genetic counseling with clinicians (N = 16) and follow-up consultation letters (N = 16) were analyzed to determine how and when communicating genetic risk information to women’s adolescent daughters is discussed. Themes from conversations included: mothers’ worries about their daughters; perceptions of their daughters’ coping; educational information; and clinicians’ willingness or reluctance to communicate directly with daughters about their genetic risk. Letters discussed daughters when informing about autosomal dominant inheritance patterns, psychosocial considerations, and screening recommendations. Results inform the value of educating mothers about how they might discuss these issues with their adolescent daughters.

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“…On the other hand, literature shows that counselees' may wish not to inform relatives [14][15][16][17] or to discharge the responsibility of dissemination to other relatives [4]. These preferences have to be respected.…”

Section: Introductionmentioning

confidence: 99%

Development of the Informing Relatives Inventory (IRI): Assessing Index Patients’ Knowledge, Motivation and Self-Efficacy Regarding the Disclosure of Hereditary Cancer Risk Information to Relatives

et al. 2014

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Disclaimer/Complaints regulationsIf you believe that digital publication of certain material infringes any of your rights or (privacy) interests, please let the Library know, stating your reasons. In case of a legitimate complaint, the Library will make the material inaccessible and/or remove it from the website. Please Ask the Library: http://uba.uva.nl/en/contact, or a letter to: Library of the University of Amsterdam, Secretariat, Singel 425, 1012 WP Amsterdam, The Netherlands. You will be contacted as soon as possible. Abstract Background Despite the use of genetic services, counselees do not always share hereditary cancer information with at-risk relatives. Reasons for not informing relatives may be categorized as a lack of: knowledge, motivation, and/or self-efficacy. Purpose This study aims to develop and test the psychometric properties of the Informing Relatives Inventory, a battery of instruments that intend to measure counselees' knowledge, motivation, and self-efficacy regarding the disclosure of hereditary cancer risk information to at-risk relatives.Method Guided by the proposed conceptual framework, existing instruments were selected and new instruments were developed. We tested the instruments' acceptability, dimensionality, reliability, and criterion-related validity in consecutive index patients visiting the Clinical Genetics department with questions regarding hereditary breast and/or ovarian cancer or colon cancer. Results Data of 211 index patients were included (response rate=62 %). The Informing Relatives Inventory (IRI) assesses three barriers in disclosure representing seven domains. Instruments assessing index patients' (positive) motivation and self-efficacy were acceptable and reliable and suggested good criterion-related validity. Psychometric properties of instruments assessing index patients knowledge were disputable. These items were moderately accepted by index patients and the criterion-related validity was weaker. Conclusion This study presents a first conceptual framework and associated inventory (IRI) that improves insight into index patients' barriers regarding the disclosure of genetic cancer information to at-risk relatives. Instruments assessing (positive) motivation and self-efficacy proved to be reliable measurements. Measuring index patients knowledge appeared to be more challenging. Further research is necessary to ensure IRI's dimensionality and sensitivity to change.

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Family communication, genetic testing and colonoscopy screening in hereditary non‐polyposis colon cancer: a qualitative study

Cited by 51 publications

References 49 publications

A Typology of Communication Dynamics in Families Living a Slow-Motion Technological Disaster

A Typology of Communication Dynamics in Families Living a Slow-Motion Technological Disaster

What Women with Breast Cancer Discuss with Clinicians About Risk for Their Adolescent Daughters

Development of the Informing Relatives Inventory (IRI): Assessing Index Patients’ Knowledge, Motivation and Self-Efficacy Regarding the Disclosure of Hereditary Cancer Risk Information to Relatives

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