Parent Meet/Support Program
Children living with sickle cell disease enjoy a variety of programs ranging from camping to scholarships to youth support programs. The parents that take care of them are often neglected. It somehow seems as if these parents are superhuman beings and meant to bear the emotional, physical, and mental stress of caring for a sick child alone.
Parent Meet Program: It is a program popularly referred to as Parents support program and designed for parents or parents of children living with SCD. It focuses on their apprehensions and provides recommendations to alleviate concerns and stress while improving their psycho-social health.
To ensure that all parents in the Greater Toronto Area have access to this program; SCAGO has divided the program into 3 regions:
Toronto Central Group
Peel Region Group
East End Group
Overseer Coordinator: Ms. Tiney Beckles
Email: support1@sicklecellanemia.ca
CC: secretary@sicklecellanemia.ca
PH: 416-745-4267
Program Objectives
To promote social interaction: By ensuring that parents get involved with other parents through social interaction and participation
To reduce feelings of loneliness: By encouraging sharing of experiences which will help the parents to see that they are not alone as they can draw strength from one another
To reduce stigmatization: Bringing more parents to talk about the disease reduces stigmatization
Empowerment: To empower parents by providing more knowledge about the disease and educating them on advocating for themselves and their children
Visitations: To encourage parents to reach out to other parents and their children when sick
Fundraising: To encourage parents to get involved in raising funds
HSK Visitation: To ensure that parents are the ones reaching out to other parents at the Sickle Cell Clinic on Tuesdays and Thursdays- parents would be trained to offer this service.
Program activities to consider include:
Spa-massage days: A therapist could be invited to give 5-10 minutes of a partial message to parents
Educational session: Speakers can be brought to address topics of great importance to parents.
These topics need to be identified online and planned ahead of time
Sharing night: Parents share their stories at this session. It would help them to laugh, and cry together while encouraging one another. It would also encourage sharing tips on remedies and drugs that work for their individual children.
Cooking with fun: Parents may rotate hosting a cooking night activity- This would encourage creativity and healthy cooking
Parents/child Pizza night: a Monthly activity that would encourage parents to bring their children to a session where they could all have fun and mingle together.
Fundraising:
To fund the Parent group activities as well as raise funds for the organization, the parent support groups need to establish a yearly goal in the area of fundraising and work towards achieving it.
Monthly meetings: SCAGO parents would get together and meet monthly to ensure the smooth running of their groups and work on their fundraising initiatives
How to achieve program objectives
Next steps
- Call a central face to face meeting of all parents
- Create an online survey to find out the best day/time of the week to hold programs<
- Group leaders training to ensure effective leadership- A guest speaker versatile in this area may be/may not be invited to educate the coordinators
- A calendar of activities needs to be drawn by each region.
- Group leaders to follow the calendar and work to ensure group cohesiveness and effectiveness