Earlier this year we asked our readers to complete a short survey about the Network Newsletter as it marks five years of publication. We are grateful to the 178 of you who responded. As with our surveys in 2014 and 2016, respondents’ views were positive regarding the newsletter’s content, format, length, and frequency. We also appreciate the many encouraging comments.
One major change from earlier years is that 45 percent of our survey respondents came from outside California, up from 24 percent in 2016. While this is a welcome indication of the broad national interest in improving systems of care for children with special health care needs, it also means that we must continue to adjust our content to appeal to a broader audience.
A new question, asking respondents to rank three topic areas by order of importance, resulted in a virtual tie for first place between Quality Standards and Care Coordination – both at 38 percent – with Family Engagement at 24 percent.
Our respondents’ primary role in the system of care for children with special health care needs remains fairly stable. Health Care Provider topped the list at 24 percent, the same as in 2016; County or State Employee came in at 22 percent, down from 25 percent in 2016; and 19 percent identified themselves as Family Members, down from 23 percent in 2016. Another 13 percent listed themselves as an Employee of a Nonprofit or Human Services Agency, up from 7 percent in 2016.
Many respondents made comments or offered ideas for future topics to cover. The list is long, but some items that were mentioned include:
- Advice on how families can be involved in advocating for a better system of care
- Updates on the CCS Whole-Child transition
- Importance of the medical home
- Cultural competence
- Showcasing innovative models and pilot programs
- Explaining what policy changes mean for families
- Transition to adult care
- Addressing burnout for providers and families
We will take these thoughts under consideration.
Finally, a few people noted that the items are sometimes a bit long. We agree, and will keep doing our best to limit the length while giving an adequate explanation of the issue. We also are exploring new ways to make it easier to skim the sections and headlines.
Responses to some key questions:
How Often Do You Read the Newsletter?
More than half of respondents (53%) reported reading every issue, and another third (37%) said they usually read it.
How Helpful Are the Following Sections of the Newsletter for You?
Webinars and Events topped the list, followed closely by Care Coordination, Family Engagement, and National Policy.
How Would You Describe the Frequency of the Newsletter (Twice Monthly)?
87% said “just right” and 12% said “too often.”
How Would You Describe the Length of the Newsletter?
Almost all respondents (93%) said “just right.”
How Would You Describe the Format of the Newsletter (paragraph summaries with links)?
96% responded “just right.”
How Much of the Information Presented in the Newsletter Are You Seeing for the First Time?
60% said that “all” or “most” of the information is new, and another third (34%) said “half.”
How Much Do You Rely on the Newsletter to Keep You Up to Date about CSHCN?
69% of respondents said they “always” or “usually” rely on the newsletter.
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