Table 3.
Perceived barriers to communicating health information to family members
| Barrier categories (n = 206)a | Definition |
|---|---|
| Communication (n = 66) | |
| Participant perceived lack of knowledge (n = 32) | Participant feels they do not have sufficient knowledge or understanding to accurately relay the information to their family. |
| Language barrier (n = 9) | Participant feels that communicating information is hindered by either medical terminology or differences in languages spoken within their family. |
| Discomfort with topic (n = 9) | Participant does not feel comfortable bringing up or discussing genetic information with family due to awkwardness of topic. |
| Not in contact with family (n = 8) | Participant is not in contact with family due to things such as physical distance or lack of cell phone service. |
| General communication concerns (n = 4) | Participant has unspecified concerns regarding communication. |
| Prefer doctor to explain (n = 4) | Participant feels this conversation would be better done by a physician. |
| Importance (n = 1) | Participant does not feel able to sufficiently stress the importance of this information. |
| Concern regarding family reaction (n = 55) | |
| Family lack of concern (n = 23) | Participant believes family will not care enough about topic to make changes to their lifestyle. |
| Family not willing to listen (n = 9) | Participant believes family will not listen to them regarding genetic information. |
| Family hostility towards advice (n = 9) | Participant is concerned that their family will be hostile towards medical advice. |
| Family not believe participant (n = 5) | Participant is concerned that they will not be believed as truthful by family members. |
| General concern regarding family reaction (n = 4) | Participant has unspecified concerns regarding family reaction. |
| Family lack of understanding (n = 3) | Participant believes family will not understand the information presented. |
| Family may not agree to testing (n = 2) | Participant is unsure they could convince their family to have genetic testing. |
| Logistics (n = 39) | |
| Location (n = 22) | Participant and family do not live close and therefore talking in person would be difficult, but optimal. |
| Time (n = 10) | Participant believes that the logistics of finding time to get together with family would be a barrier. |
| Finances (n = 4) | Participant is concerned that finances will either stop them from talking to their family or their family from acting upon genetic information. |
| Insurance concerns (n = 2) | Participant is concerned that insurance rates will go up with diagnosis. |
| General logistical concerns (n = 1) | Participants feels it will be logistically difficult to relay genetic information although how is unspecified. |
| Emotional response (n = 17) | |
| Anxiety (n = 8) | Participant believes that telling family may create undue anxiety over health outcomes. |
| Blame (n = 2) | Participant believes telling their family will place blame on someone in the family for this genetic condition. |
| Embarrassment (n = 2) | Participant is embarrassed that they have a potential health problem. |
| Sadness (n = 1) | Participant believes telling their family will trigger sadness in their family. |
| Surprise (n = 1) | Participant believes family will be unpleasantly surprised by the news. |
| Lack of trust (n = 1) | Participant lacks trust in the genetic information. |
| Guilt (n = 1) | Participant feels that telling family will make some members feel guilty for causing health problems. |
| Lazy (n = 1) | Participant is concerned laziness will stop action (either their own, or their family’s). |
| Miscellaneous (n = 16) | |
| Not sure (n = 4) | Participants do not know if there would be any barriers or not. |
| No at risk family members (n = 3) | Participant has no living extended family that could be at risk due to small family of deaths. |
| Living with disease (n = 3) | Participant is concerned with living the disease including symptoms of the disease, their ability to pass the disease to their children, and how FH affects other health concerns. |
| Actionability of results (n = 1) | Participant is concerned for whether or not anything can be done to address this health concern. |
| Participant as barrier (n = 1) | Participant feels they themselves are a barrier to talking to their family. |
| Religion (n = 1) | Participant is concerned that religious beliefs may hinder discussing genetic information with their family. |
| Not participant’s responsibility (n = 1) | Participant feels that it is not their responsibility to deal with their family’s health problem. |
| Privacy (n = 13) | |
| General privacy concerns (n = 13) | Participant had unspecified privacy concerns. |
aOne hundred ninety-seven participants noted 206 barriers