Alt Text: Sunset in the background with a silhouette of a woman riding a bicycle with a child on the back and a man pushing the back of the bicycle in the foreground; from Deekhanu, Vinit. (Photographer). (unk publication date). Biker family [digital image]. Retrieved from https://www.shutterstock.com/image-photo/biker-family-silhouette-father-daughter-572132662
The current COVID-19 pandemic has intensified existing stressors as well as added new layers of challenges for families caring for children with developmental delays or other special medical needs. As healthcare providers who work with these families, we have a great opportunity to support them and minimize their stressors.
Parents of children with special needs often experience stress beyond that of parents with typically developing children. Many of these families have less support, and cannot leave their children with other caregivers unless they have received special training to care for their children. This limitation may impact whether family members can work outside the home, or can find time to socialize with friends and extended family. It is common for families to experience a strain on finances and employment, related to missed work in order to meet their child’s needs (e.g. more frequent illnesses, appointments, and specialty care).
As providers, what can we do to help?
● Resiliency is becoming a common term and essentially means the ability to adapt well during times of stress, tragedy, threats, adversity, or trauma. During each encounter, we can help link families to resources and help them build resilience by offering a parent and/or sibling support group.
● We also have a duty to help families navigate the complex system that healthcare has become. Families, particularly families of newly diagnosed children, are unfamiliar with what resources they will need—they don’t know yet what they don’t know. Offer support to help them find pertinent resources.
● Be sensitive to the emotional impact of a new diagnosis on a family: Often families are so overwhelmed by the new information that they are not immediately ready to embrace all that they will need to do to care for their child. Offer support, be patient. If you have the resources, please link the family with a care coordinator from your facility.
● Simplify or streamline the child’s treatment to help reduce parental stress. We can intentionally collaborate with specialists, create truly integrated care plans, and coordinate medical appointments to reduce number of trips to the office and days off from work for families.
Making an effort to become aware, assessing family needs as part of our routine care, and considering the implications of the treatments and referrals we are making, are also good things to do to help reduce stress for these families.
Additional reading:
Peer, J., & Hillman, S. (2014). Stress and resilience for parents of children with intellectual and developmental disabilities: A review of key factors and recommendations for practitioners. Journal of Policy & Practice in Intellectual Disabilities. 11(2), 92–98. https://doi-org.proxy.cc.uic.edu/10.1111/jppi.12072
Shapiro, E. (2002). Chronic illness as a family process: A social-developmental approach to promoting resilience. Journal of Clinical Psychology. 58(11), 1375–1384. https://doi-org.proxy.cc.uic.edu/10.1002/jclp.10085
Whiting, M., Nash, A., Kendall, S., & Roberts, S. (2019). Enhancing resilience and self-efficacy in the parents of children with disabilities and complex health needs. Primary Health Care Research & Development. 20, E33. doi:10.1017/S1463423619000112
