Things I Found on PHA's Website
What About Caregivers?
This week I had a request for information on how to balance being caretaker of a PH family ember with taking care of your own needs. I thought of the PHA Conference materials that are available online; I found these items under 'Education Programs' in the website menu then following the links for 'International Conference & Scientific Sessions' and then 'Presentations and Recordings'.
I found two handouts from the conference session: What About Caregivers? The first PDF page has tips on taking care of yourself, reducing stress and improving effectiveness. It includes links to five other resources for caregivers.
The second PDF, by a caregiver, begins with "My main point that I want to stress is that together we are a TEAM: T- Together, E - Education, A - Associations and M - Medication." She goes on to expand on each of those points with valuable information learned from experience.
Since this topic was suggested by a caregiver for a teen-aged child with PH, I found a session by parents of children with PH ages 12 and up. They talked about letting go, letting the children grow up a little bit. The recording is of these parents sharing their experiences, learning to allow their teenagers to become more independent. Toward the end of the recording the discussion is about connecting with other parents of children with PH.
In addition to the conference materials, there is a page of links to other caregiver resources.
Resource Links:
Caregiver Handout 1 PDF
Caregiver Handout 2 PDF
Parenting a Child with PH (ages 12 & up) MP3
Links to other caregiver resources
Back to the Things I Found Index
I welcome suggestions! Please send them to me at pha@PHAssociation.org. If you have a particular interest or need for info on any PH-related topic, please suggest it to me and I'll locate the resources on the site. If I can't locate information for your topic, I'll know what to suggest for additions to the website. If you have found something on the website to be particularly helpful please suggest that as well.
Kathryn Frix
Online Community Liaison
Pulmonary Hypertension Association
