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FOR PROVIDERS: SOME THOUGHTS ON IMPROVING PARENT/PROVIDER RELATIONSHIPS
By BARBARA J. GOFF, Ed.D
Parents report concerns in two major areas of residential programs:
communication and staff training. Below are some ideas you might want to
consider in addressing those broad concerns which, most likely, you share.
- Develop communication protocols for parents, so they know who to talk to
about what and when (e.g., calling the residence during peak program time to
talk with direct support staff is not a good idea. Calling or meeting with
the manager when they can have an uninterrupted, private conversation is a
much better idea).
- Establish program routines, schedules, paperwork, and accountability
systems prior to opening the program and review periodically.
- Develop clear program policies and procedures and review with parents
prior to admission. Include policies on phone calls, visitation, searches,
weight management, behavior management, and anything else that guides your
- For new (or troubled) programs, hold monthly parent meetings (if enough
family members live within the area). Have an agenda; include as many staff
as possible and invite the dietician, behavior specialist, nursing staff,
and any other involved clinicians to share their work and answer questions.
Provide families with their child’s monthly weight record, report on planned
recreational and social events, discuss any changes or issues that have
arisen since the last meeting, and solicit ideas for improvement. Keep it
structured and upbeat with opportunities for everyone to contribute, without
it becoming a gripe session. You will find that parents will ask to reduce
the frequency of meetings over time as they come to know (or come to know
you anew) and trust you. (If a meeting isn’t feasible send out monthly
weight charts and activity schedules to families).
- Establish “traditions” in which families contribute; such as the annual
summer barbeque, the holiday party, the anniversary of residency for the
individuals, birthday celebrations, agency events…
- Establish a schedule of parent contact via phone or email, especially
for those families who do not have frequent on-site contact. Let them know
what their son/daughter has been doing. Share a story or two. Fill them in
on planned events. Don’t wait for a crisis to pick up the phone. Sharing the
positives builds trust and respect and a belief that you truly care about
- Be honest with families. Tell them what is going on and ask for help
when you need it. If you messed up-admit it-apologize-institute corrective
action-and move on. The more we acknowledge that caring for an individual
with PWS is not an exact science and that we are all simply human and doing
our best, the stronger the bond will be. Put your energy into progress not
- Respond promptly (within the day-no more than 24 hours) to parent
concerns/requests even if your response is “I don’t know yet.” It’s
disturbing to think that the folks who care for your child don’t take you or
your concerns seriously.
- Enlist the parents to support you in working out conflicts with your
monitoring and funding agencies. They can be extremely effective advocates
on issues you all care about. Parents want the program to succeed just as
much as you do.
- Identify and support someone in your agency (director, manager,
clinician-someone who will be around for awhile) to become expert in PWS.
- Develop a training program specific to Prader-Willi syndrome. Utilize
experts in the field and parents. Invite your funding and licensing agencies
such as the State Department of Mental Retardation and Developmental
Disabilities (or your state equivalent) so they can learn about the
uniqueness of PWS and the need for specially designed services so that they
have a stake in your program.
- Develop an in-house handbook of essential information, including a
personal profile of each resident (nothing too clinical—likes, dislikes,
idiosyncrasies). Involve the family in this and update at least annually.
- Establish a routine and on-going schedule of PWS training for “old” and
new staff. Contact PWSA/USA for a list of resources, including educational
DVD’s, books, newsletters, research articles…Create a training program and
handbook with these materials to be reviewed with new staff by your agency
PWS expert. Become a member of PWSA/USA and when you receive your copy of
The Gathered View newsletter-distribute it and discuss at your next staff
meeting. Reading an article or viewing a video is not nearly as effective a
learning experience as reading, watching, and discussing!
- Join your local or regional Prader-Willi Association. Go to conferences.
Bring back the information and share at staff meetings. Meet and stay in
touch with other providers.
- Consider a one day annual retreat to assess progress, brainstorm
strategies, review and revise existing routines and practices, and establish
new goals for the next year. Remember, the individuals are changing-so be
sure to keep up with them and keep your services fresh and interesting. Make
your home a place where people want to be or they may take it upon
themselves to change things in a way that you aren’t prepared for.
- Establish a mentoring program for new staff, so that they are paired
with someone more experienced for a specified period of time.
- Give your direct support staff responsibilities that are meaningful and
challenging and train them in those responsibilities.
- Remember, well prepared staff members who are treated as professionals
are much more likely to stay within the program and do a good job than those
who are "thrown into” the residence to sink or swim.