Readers have responded positively to a 2016 survey about the Newsletter of the California Advocacy Network for Children with Special Health Care Needs. More than 160 subscribers answered questions about the content, format, and frequency of the Newsletter, which provides state and national policy news, resources, and event information specifically for people interested in improving the well-being of children with special health care needs and their families.
The Newsletter has been published every two weeks since January 2013. A 2014 survey also indicated high reader satisfaction. The 2016 respondents expressed approval of the content and frequency of the Newsletter, but several indicated some difficulty with reading it in its current format. A redesign is in the works.
As to their primary role in the system of care, about a quarter of respondents indicated they were employees of county or state health agencies, and another quarter listed their role as a family member of a child or youth with special health needs. Sixteen percent listed health care service provider other than physician, and 9 percent of respondents were physicians. Seventy-seven percent of respondents have their primary residence in California.
Respondents offered multiple ideas for topics to be covered in the future, including advocacy and policy change, education issues, mental and dental health, palliative care, human interest stories, best practices from other states, and resources for Spanish speakers. New sections on care coordination and family engagement already have been added to the Newsletter.
Responses to several key questions:
How often do you read the Newsletter?
About half of respondents (48%) reported reading every issue, and another third (34%) said they usually read it.
How helpful are sections of the Newsletter for you?
The California Policy and Resources sections topped the list of helpful sections, followed closely by Webinars, Family Engagement, National Policy, and California Children’s Services Updates.
How would you describe the frequencey of the Newsletter (twice monthly)?
83% said “just right” and 16% said “too often.”
How would you describe the length of the Newsletter?
Almost all respondents (91%) said “just right.”
How would you describe the format of the Newsletter (paragraph summaries)?
95% responded “just right.”
How much of the information presented in the Newsletter are you seeing for the first time?
50% said that “all” or “most” of the information is new, and another 42% 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, and another 26% said "sometimes."
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