Caring for a child with SCID can be 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.
The Immune Deficiency Foundation (IDF) Virtual Caregivers Support Group, is an online peer support program guided by a licensed mental health professional, designed for caregivers to meet and explore shared experiences as a caregiver. Participants must be 18 years or older and connected to a person with a primary immunodeficiency (PI). This includes grandparents, siblings, aunts, uncles, etc.
What is the purpose of the support groups?
The purpose of the Virtual Caregivers Support Group is to provide a safe, judgment-free, and confidential virtual space for peer support to caregivers of persons in the PI community. Participants will find community and a connection to others as the group addresses emotional distress associated with caregiving while exploring PI-specific challenges.
What topics will be discussed?
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, self-care, and much more.
What is the group structure?
Support groups are open to any person active in the care of a person in the PI community, including parents, grandparents, siblings, or others connected to the person in care. Each group is limited to six participants. The group meets for one hour, once a month.
Who facilitates the support groups?
Each group is guided by a facilitator who holds healthcare credentials and has training with facilitating group offerings. The group facilitator is an experienced professional who has worked with individuals who are dealing with rare or serious medical conditions in their family to provide individual and family support.