Lesbian and Gay Family Building Project of Ferre Institute Final Report
The Lesbian and Gay Family Building Project of Ferre Institute targeted over 400 LGBT families to determine what family history information they are collecting and provide them with these customized booklets to promote health awareness. The project includes assessment of usage and usefulness of resources provided to each family.
In late November, booklets were distributed to the 408 families on the mailing list, which reaches across the entire upstate New York region. The booklets were distributed without any other resources. 500 copies of each booklet were printed, for a total of 1,000 booklets. 408 toolkits were mailed to the LGBT mailing list. Five toolkits were requested from the online inquiry form at www.lgbthealthinitiative.com. In addition, 50 toolkits were distributed at outreach events and the 2009 Pride and Joy Families Weekend Conference. A total of 463 toolkits were distributed.
There was a general consensus that the community was happy to see a resource tool that represented their family.
- 71% of people stated that they could see the need for collecting a family health history after they received and read the booklets.
- 94% said that the booklets made it seem simple to collect and record health information.
- 50% of respondents said that they had experienced barriers when trying to collect family health history information in the past. The reasons were mainly a lack of information due to poor records or death in the family. No respondents listed their status as LGBT as a barrier in the follow-up survey. In the first survey, some respondents reported that their “family of origin” had excluded them due to sexual orientation.
- 68% of respondents said that the pictures and stories depicted in the booklets were a welcoming sign of openness to LGBT families. One comment was given that images did not make a difference to them when collecting family health histories.
- Only one participant reported using at least one of the tools in the booklet to collect and record family health history.
Understanding the Toolkit:
- 88% of respondents said that the booklets helped them understand how genetics and lifestyle are both important factors of family health history.
- 40% said that researching their family health history raised questions that needed additional information.
- 29% brought this information to their healthcare provider.
- 28% considered taking these questions to a genetic counselor.
- One person reported having spoken to a genetic counselor and receiving helful information. Comments about why they had not taken advantage of the free genetic counseling service were generally that “I already know my history, so there is no need to see a counselor.” Two people said that it is “too depressing” and “just not interested.”
Using the Toolkit in the Future:
- All but one of respondents said that they would share any information that they collected with other family members, and 80% said that they would encourage family members to use these tools to keep track of family health history information.
