CCFHH Program Awardees: Evaluation By Surveys

From WikiAdvocacy

Some of the program awardees utilized surveys to examine the impact of the tool. The results of these evaluation surveys are below along with links to the full reports.

[edit] Brookdale University Hospital Medical Center

Brookdale University Hospital Medical Center distributed surveys at various sessions where the Does It Run in The Family? booklets were used.

In ninety percent of the activities conducted, participants signed an attendance sheet. This has allowed us to obtain stats on the number of individual reached and number of booklets distributed.

We developed a brief survey to use with the parents who agreed to utilize the toolkit. The survey asked basic questions of whether the booklets had generated any family discussions with older family members. The survey included questions about conditions and other diseases in the family’s health history, with outcome queries such as, “did parents find out anything that they had not previously known”.

A survey was also distributed at some of the library sessions. Participants were asked to fill out the survey and mail it back. However, only one survey was returned.

The responses from the survey were favorable, with families stating that they found the booklets useful and it they did help to generate a conversation around Family Health History.

Click to see Brookdale University Hospital Medical Center: Final Report.

[edit] Duke University Institute for Genome Sciences & Policy

The Duke University Institute for Genome Sciences & Policy Review Board developed a survey and administered it online using the Survey Monkey tool.

A survey was developed and approved by the Duke University Medical Center Institutional Review Board to assess the impact of receiving the booklets and to explore employees’ previous FHH collection and sharing experiences. All Duke employees (18 years or older) who: (1) attended a LFL Health Check appointment where they received the booklets and (2) provided an email address to LFL were eligible to participate in the survey.

The survey was organized into three parts including: a brief demographic questionnaire; an evaluation of the adapted ‘Duke’ CCFHH booklets and the manner in which the booklets were distributed; and exploration of past experiences in regard to collecting and sharing family health history information. Survey items consisting of Likert, multiple-choice and open-ended questions. The survey was designed and administered through the online survey tool, Survey Monkey and was estimated to take approximately 10 to 15 minutes to complete. No identifying or personal health information will be collected on the survey.

Participants who completed the on-line survey were given the option to be entered in a raffle to win their choice of either a LFL chair massage or LFL dollars which can be used toward numerous health promotion supplies such as exercise gear and videos.

The recruitment emails were sent approximately 3-5 weeks after the employee’s Health Check assessment. Employees who do not complete the survey within 2-4 weeks of the first email were sent a second, reminder email. Consent was obtained electronically by agreement to complete the on-line survey. An introduction to the survey describing its purpose, risks and benefits was included as the front page to the survey. Participants were asked to agree to participate in order to continue. The survey was conducted for approximately three months between December 2008 and March 2009.

In total, 518 employees received an email invitation to complete our on-line survey about family health history. We received 106 completed surveys for a survey response rate of ~20%. The survey instrument and responses are included for review.

Overall the booklets were very favorably evaluated. The vast majority responded that the conditions described were “Very Much (66%)/Somewhat (30%)” personally important, that the booklets explained how to gather FHH “Very Much (64%)/Somewhat (35%)” well, and that the employee stories (Very Much (38%)/Somewhat (45%)) and local resources (Very Much (64%)/Somewhat (33%)) were helpful. In addition, 34% indicated that they first learned about FHH through the booklets. Further most respondents felt that FHH should be a part of Duke employee health programs (Definitely (64%)/ Maybe (32%)) and that distributing them through Health Check is appropriate (Definitely (73%)/ Maybe (21%)).

Consistent with previous studies, the great majority reported FHH was “very/somewhat” (98%) important to their health. In addition, 55% of respondents felt they could “definitely” collect their own FHH and 68% reported they had attempted to collect FHH in the past. The most significant challenge for collecting FHH was that relatives lived far apart (54% “very/somewhat” difficult) followed by not having enough time to do it (45% “very/somewhat” difficult). In addition, 83% of respondents reported giving FHH to their health care provider most often through completing a form on their own (43%), though only 31% reported making any updates to their FHH. Promisingly, 67% reported discussing FHH with their health care provider.

Click to see Duke University Institute: Final Report.

[edit] Lesbian and Gay Family Building Project of the Ferre Institute, Inc.

The project was launched with a pre and post survey to collect information, views and practices in LGBT families regarding health histories and use.

Survey One:

In the summer of 2008 staff and genetic counselors developed a survey tool to learn how the LGBT identified individuals define family health history and whether they currently document their family health. This enabled our group to understand the non-biological and biological family structure and how they were perceived to affect health outcomes. We also asked participants to indicate the factors they considered to make up their health history. Our survey provided several options, including genetics, diet, spiritual wellness, cultural beliefs and daily habits. Participants were asked if they felt comfortable talking to their families and their health care providers about health concerns and health issues as well as about their LGBT status.

The survey was made available online using Survey Monkey (an online survey tool) and paper versions to our LGBT community mailing list. In addition, this survey was made available at two LGBT Pride events in upstate NY (Binghamton NY and Rochester NY). An offer of an incentive (a chance to win one of three Barnes and Noble gift cards) was made available to encourage completion of the survey. We received 119 completed surveys (online and print).

Some interesting information from Survey One:

1. Survey respondents with children: 61% identified their children in the family as biological, 56% indentified non-biological children, with some identifying both biological and non-biological children.

2. 77% reported that they have a record of health history information for their children.

3. 82% of the respondents reported sharing health history with their family. 93% felt comfortable asking family members about health concerns and 84% reported openness in family to discuss health issues but when asked if they collected family health history from relatives for the purpose of developing a record of family health history, only 40% responded affirmatively.

4. In this survey, 86% reported that they shared family health history with medical practitioners and 76% believed that their medical provider used this information in their medical guidance. Yet, one respondent wrote that “I believe that most medical providers have predetermined assumptions about health and disease that isn’t easily integrated with information about my cultural beliefs, etc”. We also had an interesting issue raised-“I think too much emphasis on genetics can be damaging-I suggest you read “Biology of Belief”.

5. When we invited respondents to share who is included in their “family”:

a. “Biological father of my son, who is my cousin”

b. “My mother only” and “mother in law”

c. Grandson

d. Godson

e. Dog, cats

f. Former lesbian partner

g. Father, step brothers/sisters

6. Types health history currently available to some families included:

a. “Donor is actively involved and we have access to his health history”

b. “Some maternal history for both but very limited, no paternal history”

c. “We got a form from California Cryobank sperm bank and it gives a good deal of health information.”

d. “It is minimal.”

In addition, some of the comments we received from respondents:

“We are open with our son about his sperm donor and how the donor’s health history will affect him.”

“...we do not formally collect family health history info, but we know we should start to, especially now that we have kids.”

“...I’ve found it hard to find a doctor who is accepting of my lifestyle.”

“...I’ve discussed some issues with my family, but they were not very open.”

Information learned in this survey process assisted customization of family history toolkits and helped frame content for subsequent educational workshops for LGBT parents and prospective parents.

Survey Two:

In late January of 2009 a follow up survey was developed and sent to LGBT network members in upstate New York asking about “Does it Run in the Family” Toolkits that they received in early November. The survey was made available on-line (Survey Monkey). Two email reminders were sent to members of Pride and Joy Families email list-serves in the following upstate NY cities: Binghamton, Syracuse, Rochester, Ithaca and Elmira-Corning. Three restaurant gift cards were offered as an incentive to complete the survey. See below for detailed discussion of survey two results.

There was a general consensus that the community was happy to see a resource tool that represented their family.

Twenty two confidential surveys were received from the online Survey Monkey site, and via paper mail. The respondents were largely female and lesbian (87%), almost all respondents were partnered and 72% of respondents were between the ages of 30 and 50.

Receiving and viewing the Toolkit

Most people stated that they could see the need for collecting a family health history after they received and read the booklets. (71%)

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 said that they have used 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 health care provider and 28% considered taking these questions to a genetic counselor.

One person answered that they have spoken to a genetic counselor and the information they received was helpful. 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.

Useful Comments:

A few commented that they were disappointed the booklets did not have a section for writing in health information.

Three people said that although they could see the importance of this toolkit, they would like to see more information about health issues that are currently affecting their families. (Diabetes, high blood pressure…)

Two survey respondents commented on the challenge of documenting family health history in cases of adoption and lack of access to health records for adoptees and or children that have been introduced into the family by adoption.

One important suggestion for future use:

There were statements made in the comments area of the online survey about how LGBT individuals had never recorded this information because family trees and charts did not have a place for their partners and their non-biological children.

Click to see Ferre Institute, Inc.: Final Report.

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