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Unpacking the Blockers: Understanding Perceptions and Social Constraints of Health Communication in Hereditary Breast Ovarian Cancer (HBOC) Susceptibility Families

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Journal of Genetic Counseling

Abstract

Family communication is essential for accurate cancer risk assessment and counseling; family blockers play a role in this communication process. This qualitative analysis of social exchanges is an extension of earlier work characterizing those who are perceived by study participants as health information gatherers, disseminators, and blockers within families with Hereditary Breast and Ovarian Cancer (HBOC) susceptibility. Eighty-nine women, ages 23–56 years, enrolled in a Breast Imaging Study (BIS) and participated in a sub-study utilizing a social assessment tool known as the Colored Ecological Genetic Relational Map (CEGRM). Purposive sampling ensured that participants varied according to numbers of participating family members e.g., ranging from 1 to 6. Eighty-nine women from 42 families (1–8 relatives/family) participated. They collectively designated 65 blockers, both male and female. Situational factors, beliefs, attitudes and cultural traditions, privacy and protectiveness comprised perceived reasons for blocking intra-family health communications. Longitudinal data collected over 4 years showed families where blocking behavior was universally recognized and stable over time, as well as other families where blocking was less consistent. Self-blocking was observed among a significant minority of participating women. Blocking of health communications among family members with HBOC was variable, complex, and multifaceted. The reasons for blocking were heterogeneous; duration of the blocking appeared to depend on the reasons for blocking. Blocking often seemed to involve bi-directional feedback loops, in keeping with Lepore’s Social Constraints and Modulation Theory. Privacy and protectiveness predominated as explanations for long-term blocking.

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Acknowledgements

We wish to thank Kathryn Nichols, Barbara Hayden, Ann Carr from Westat and NIH summer students Kimberly Dessoffy and Jessica Davis for practical assistance with this study. Of course we are also indebted to the families who have made this work possible.

This work was supported by the Intramural Research Programs of the US National Cancer Institute and National Human Genome Research Institute, National Institutes of Health, and by support services contracts NO2-CP-11019-50 and N02-CP-65504 with Westat, Inc., Rockville, MD, USA.

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Authors and Affiliations

  1. Clinical Genetics Branch (CGB), Division of Cancer Epidemiology and Genetics (DCEG), National Cancer Institute (NCI), National Institutes of Health (NIH), Department of Health and Human Services (DHHS), 6120 Executive Blvd, Rockville, MD, 20852, USA

    June A. Peters, Lindsey M. Hoskins, Jennifer T. Loud & Mark H. Greene

  2. The College of New Jersey, Ewing, NJ, USA

    Regina Kenen

  3. Social and Behavioral Research Branch, National Human Genome Research Institute (NHGRI), NIH, DHHS, Bethesda, MD, USA

    Laura M. Koehly

  4. Biostatistics Branch, DCEG/NCI/NIH/DHHS, Rockville, MD, USA

    Barry Graubard

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  1. June A. Peters
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  2. Regina Kenen
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  3. Lindsey M. Hoskins
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  4. Laura M. Koehly
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  5. Barry Graubard
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  6. Jennifer T. Loud
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  7. Mark H. Greene
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Correspondence to June A. Peters.

Appendix 1- Glossary of Terminology

Appendix 1- Glossary of Terminology

CEGRM – Colored Eco-Genetic Relationship Map- a method introduced in 2001 to present simple, concise, visual representation of the social interaction domains of health information exchange, tangible, emotional, and spiritual support through the application of color-coded symbols to the genetic pedigree.

Participant or study participant - woman participating in CEGRM study portion of the Breast Imaging Study

Blocker- Relative identified by study participant as impeding the flow of genetic health information in the family.

Themes- the primary reasons that an individual was perceived to be a blocker by the participant.

  • Salient Situational Factors- The effects of particular social, medical, financial or emotional situations that affect genetic health communications; may be chronic or acute

  • Beliefs and Attitudes- concerned with personal and cultural ideology and values.

  • Protectiveness- protect self or others from emotional or social discomfort

  • Privacy- the desire to have control over the conditions under which personal data are released.

Agreement about blocking behavior- the extent to which the participating women in a given family identify the same person as blocking communication.

Unanimous agreement about particular blockers existed when every member of multiplex families with multiple participants chose the same person at least once.

Partially agreed-upon blockers were chosen by at least two participants, but not every participant. This agreement could occur within the same year or cumulatively over several years.

Sporadic blockers were those designated by a single person.

Duration of blocking behavior- the number of years during which a relative was considered to be a blocker

Permanent Duration- Relative identified as blocking every year of study by at least one study participant

Intermediate Duration- the blocker was chosen at least half the time.

Transient Duration- Most individuals who were given a red star were given them sporadically, with no specific pattern over time

Steadfast blockers- persons who consistently were perceived as impeding health communications by many family members over multiple years, i.e., a combination of high agreement and long duration over several years

Self-blockers- placed a red star on themselves at least 1 year and sometimes multiple years.

Social Network Variability- variability in social network patterns, themes, congruence and longitudinal trends associated with perceived blocking of health information

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Peters, J.A., Kenen, R., Hoskins, L.M. et al. Unpacking the Blockers: Understanding Perceptions and Social Constraints of Health Communication in Hereditary Breast Ovarian Cancer (HBOC) Susceptibility Families. J Genet Counsel 20, 450–464 (2011). https://doi.org/10.1007/s10897-011-9370-0

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