Organizing a Pediatric PAH Patient Family Weekend
Initial Planning (6-12 months ahead)
- Form the organization team
- Include at least a parent and/or a patient representative for firsthand insights
- Define objectives
- Evaluate possible budget and sources of funding
- Think of the smallest possible cost, to enable everyone to participate
- Select appropriate dates according to school holidays, availability of the speakers or other participants who take part in the program
Objectives
- Create an inclusive environment for learning, support and fun
- Facilitate connections between families and between children and teens that have PAH or whose brother/sister have
- Provide educational and bonding opportunities in a happy, friendly atmosphere
Find a Suitable Venue
- Accessible facility
- Easy to reach by car or train
- Friendly to PAH patients:
- As flat as possible
- Not too many stairs
- Not too long distance walks
- Will anyone need a wheelchair or use an electric scooter?
- Avoid cold, humid, windy weather but also too hot weather
- Ensure oxygen support if some patients need it
- Check for appropriate activity spaces
Essential Precautions
- Make sure you have a doctor and a nurse in the team
- Prepare all the emergency contacts and check before the date if they are correct (including closest hospital pharmacy for PAH medication)
- Prepare emergency protocols
- Share phone numbers to communicate easily with the participants (WhatsApp group)
- Make sure patients who have pump have a spare one with them, all the consumables and emergency number of their provider
Program Development
- Not only medical presentations!
- Also fun moments for everyone
- Discussion with the doctor, starting with what pediatrician knows of their disease, then learn a bit more
- Parents can receive a more comprehensive presentation and discuss their questions with the medical team while children go for outdoors activity or other fun activity
- Bring books for different ages
- Plan age-appropriate activities with rest moments
Logistics
- Transportation/transfers
- Easy parking
- Meal planning
- Registration process
- Room assignments – need for private bathrooms
- Help participants to carry their luggage or locate their room
Activities
- Workshops for parents and patients: together but also separate
- Peer support
- Adapted activities: creative, indoor, outdoor
- Small talent show or family portrait session
Staff and Volunteers
- Create a team with various competencies
- Assign specific tasks
- Brief all staff on PH awareness and emergency procedures
- Young adults who used to be pediatric patients are precious
- Parents with long experience of managing the disease
- Social worker/psychologist/other specialist
- Why not art therapist or sophrologist, yoga teacher?
Communication
- Social media announcements
- Develop participant information package
- Welcome goodies
- Establish on-site communication system
- Install a participant book
- Satisfaction survey, open to suggestions
Follow-up
- Send thank-you notes to participants and contributors
- Share digital photo albums or event videos
- Organize a debrief with the organization committee
- Study the feedback
- Use debrief and feedback for next events
Closing and Opening
- A heartfelt message of gratitude
- Contact information for further support or future events
- End with a motivational quote or image