Caring for a child with severe combined immunodeficiency (SCID) is a stressful journey. Parents must navigate complicated medical procedures, social isolation, strained relationships, disruptions in work, and financial burdens all while ensuring successful treatment and recovery for their child. But, caregivers don’t have to go it alone.
As part of its Virtual Support outreach effort, SCID Compass is launching its Virtual Caregivers Support Groups, an online peer support program for those families whose children have SCID. The Virtual Support Groups aim to complement the current offerings of IDF. In the following Q&A, SCID Compass Virtual Associate Fritong Mofor provides details about the SCID Compass Virtual Caregivers Support Groups initiative, including when sessions occur and how to join them.
What is the purpose of the support groups?
The purpose of SCID Compass support groups is to provide a safe, judgment-free, and confidential telehealth space for peer support to caregivers of children diagnosed with SCID. As a virtual service, the group provides the advantage of increased accessibility to caregivers.
The group aims to offer caregivers support, community, and a connection to others as they navigate life with a child who has SCID. The groups provide support by addressing:
- Emotional distress associated with SCID-specific challenges
- Access to community resources
- The development of a positive network of peers
Why is it important for caregivers to join a support group?
Support groups provide additional support to caregivers to address and alleviate emotional distress and improve the quality of life for both the child diagnosed with SCID and the caregiver. Many studies have proven that individuals who actively engage in local groups experience a better quality of life and report reduced symptoms of distress when compared to individuals who have not participated in such groups. It’s an excellent opportunity to identify and address challenges without feeling alone in an intimate virtual group setting.
How will caregivers benefit from participating in a support group?
Participants will benefit in many different ways from the virtual groups. A primary benefit will be increased access to other caregivers who share the same experiences, growing pathways to community resources, knowledge, and access to practical support.
In addition, caregivers will have access to a space to be open and honest while sharing their own experiences and learning from other caregivers. Caregivers can look forward to identifying and exploring their own personal needs. Participants also have the added benefit of accessing these groups from the comfort of their own homes.
SCID Compass will also coordinate with community and clinic sites for those who want to participate in the groups but have environmental limitations. If you have any additional questions feel free to reach out to Fmofor@primaryimmune.org.
What topics will caregivers discuss in the support groups?
Group topics are based on the expressed interest of the group participants. Some current group topics include:
- Support system awareness
- Use of resources in the community
- Emotional coping as a parent/caregiver
- Managing changes in relationships
- Setting boundaries with family members
- Child advocacy
- Coping strategies
- Managing information overload
How many support groups are there, when do they meet, and how are they organized?
The program has cohorts and there is no capacity limit for each cohort but group meeting sizes are limited to six participants. Cohorts are assigned based on the time zone of the group facilitator and the participants' physical location. Cohorts will begin meeting weekly and may alter the meeting schedule to fit the needs of the group.
Who may participate in the support groups?
Support groups are open to any family member of a child with SCID, including parents, grandparents, siblings, or others closely connected with the family and their journey. All will have access to coordinated telehealth services.
How do caregivers join a support group?
Interested participants can register at https://scidcompass.org/support.
Who facilitates the support groups?
Groups are guided by a facilitator who may hold health care credentials and have training with facilitating group offerings. The group facilitators are experienced professionals who have worked with individuals who are dealing with rare or serious medical conditions in their family to provide individual and family support
What is your role with the support groups?
As the SCID Compass Virtual Care Associate, I've been applying my previous experience as a Program Manager at a behavioral health agency to develop the structure and coordination of the Virtual Caregivers Support Groups. I have developed the policies and procedures of the project and will be coordinating services. This includes assigning cohorts, communicating directly with group facilitators, conducting caregiver’s needs assessments, and working collaboratively to ensure optimal services for group participants.
In short, my role is to support and promote the SCID Compass Virtual Caregivers Support Groups to the highest of my capacity. The main goal is to provide a smooth and easy experience for caregivers of children with SCID to access needed resources and therapeutic services.
What other virtual services will be offered in the coming months?
In addition to peer support groups, SCID Compass will partner with qualified providers in individual states to grow a directory for caregivers interested in individual therapeutic services. If you are in urgent need of support, feel free to email Fmofor@primaryimmune.org.