By Diane Linnehan, Program Director
The results are in!
One of the primary strategic objectives of the Foundation Family Support is to characterize the needs of families to create an environment of continuous improvement in Family Support services.
In March of 2017, Diane Linnehan (Program Director), Jackie Jacobs (Family Engagement Specialist), and Angie Foster (Family Support Chairperson) drafted a list of potential issues affecting families of children with PMS. The team requested feedback from several regional representatives and the Parent Action Committee. Based on the feedback, the list (not surprisingly) totaled 13 pages! Because we knew that it would be impractical for parents to participate in such and expansive survey, we decided to break the questions into topics and create a series of outreach efforts to gather information on topics. Since we were getting ready to plan session topics for the 2018 conference and McPosium, it was decided that research topics would be the focus of the first survey.
In May 2017, a Research, Health and Behavior Experience survey was issued to PMS families around the world. The 303 families that responded to the survey were asked to identify the most pressing issues that they have dealt with in the past three months, and to identify their future concerns. Today, the top three concerns are communication, sleep, and behavior. Future concerns focused on regression, seizures and GI issues. Families also identified 14 health-related topics as “critically important”, “important” and “not important”. Those identified most often as “critically important” are communication, cognition and learning, monitoring wellness, challenging behaviors, special concerns in adults.
Most families expressed an interest in learning about research and participating in research. The information provided by families in this survey will help to develop family support program strategies and to identify topics of interest for the 2018 conference. PMSF will use the baseline data to help us understand how well we are addressing issues of greatest concern to our families through PMSF programming and activities.
A comprehensive survey Final Report was e-mailed to families on Nov 17. The report includes demographic information, question results, and summary statements. The survey results revealed that families may not be aware of some of the research-related information that is currently on the website. Therefore, an interactive infographic, including links to information was developed to help families find research- related information. The family support team also created an action plan to ensure all feedback in the survey is accounted for while creating strategies, setting priorities, creating program improvements, setting budget and objectives for 2018.
Research, Health and Behavior Experience Final Report
Research, Health and Behavior Interactive Infographic
We sincerely thank our busy families for once again answering the call to help all PMSF families by responding to this survey. The team is already discussing topics for the next outreach. If you have questions or suggestions, contact Diane at diane@pmsf.org, Jackie at jackie@pmsf.org or Angie at angie.j.lin@gmail.com.
Please note: A Spanish version of the survey (translated by a parent volunteer) is still available to Spanish-speaking families until Dec 15. If you wish to take the Spanish version of the survey, click the link below. The results of the Spanish survey will be compared to the English version: