The Pulmonary Hypertension Association (PHA) has produced a new resource, “Pediatric Pulmonary Hypertension: A Guide to Resources for Parents and Families,” in response to 2017 survey results of PHA’s pediatric community. The survey was conducted to learn more about the community’s challenges, needs and interests.
PHA received responses from hundreds of health care providers, parents and patients — that is, adults who were diagnosed as children or teenagers. One of several themes that emerged was the need for more information about the resources PHA offers. Across the board, respondents who were aware of a given PHA resource found it useful and rated it highly, however many respondents — especially family members and patients — often did not know that resources existed.
In the new pediatric resource, families will find:
- An overview of pediatric PH
- How to locate specialized pediatric PH care
- Ways to connect with other families through PHA
- Emotional support opportunities for all family members
- How to work with a child’s school
Each topic includes links to additional online resources, tips from members of the pediatric community and ways to find out more information.