Pediatric Palliative Care Coalition’s
Family Subcommittee Meeting

Minutes
October 29, 2004
Held at The Children’s Institute

In Attendance:
Dr. Anthony Bauer - University of Pittsburgh
Carolyn Brinkley - Children’s Home of Pittsburgh
Bill Grattan - Ronald McDonald House
Dan Leger - Forbes Hospice
Joan McConahy - Parent
Meghan O’Donnell - Co Founder Pediatric Palliative Care Coaltion
Donna Salovay - Western PA School for Blind Children
Peggy Stubbs - Take Charge of Your Life Coalition
Linda Woodward - Parent
Yvonne Van Haitsma - Bayer Center for Non Profit Consultant

Accessing Family Input

The group discussed various ways to access diverse family input. A decision was made to create a division of families into two categories: 1.families whose children have died from a life threatening illness and 2. families who currently have a child with a life threatening illness.

This categorization will assist in creating focus groups that are safe and comfortable for those families who would like to participate. It will also assist in keeping a solid focus in each group so that in depth information can be gathered.

The two methods agreed upon to access family input were 1. focus groups, 2. Surveys, mail surveys as well as website access to the surveys for families to complete on-line. Dr.Tony Bauer has been creating a website which will be available for families when the survey is completed. This website will also have information about the Coalition and resources for families to access online.

This website can be viewed by coalition members at www.pitt.edu/~tbauer/pppcc/index.html

This site is a work in progress, please feel free to email your feedback to Tony Bauer (ajmbauer@excite.com).

 Creating the Survey

The survey was created from a template of questions presented at the meeting. The survey will be sent out to all Coalition members via email once completed, for feedback.

Focus Groups

          Each member of the family subcommittee will assist in recruiting families for the focus groups. Each group will consist of 8-11 participants. There will be two possible times for each family category one evening and one morning time to accommodate family availability. The groups will be facilitated by Dan Leger RN from Forbes Hospice and Yvonne Van Haitsma, with Meghan O’Donnell recording and taking notes.

          If other Coalition members would like to recruit families for these dates or attend one of the focus groups, please contact Meghan O’Donnell at Meghan27@bellatlantic.net.

Survey Mailing/Access

Surveys will be sent out and available on the web in January after being reviewed and approved by Coalition Members. Ideas such as providing Coalition members with surveys and stamped envelopes to send to the families they serve, creating newsletter articles with information about the Coalition and website access, as well as major newspaper advertisement, were considered in order to ensure family feedback.

Next Meeting of Family Sub-committee and full Coalition meeting to be announced.

Any questions comments or feedback please email Meghan O’Donnell at Meghan27@bellatlantic.net.