Author: Reagan Denny

Status: Project Concept

Background: The care of pediatric patients with chronic illnesses may be a long, complex journey. Parents of these children often deal with high levels of stress, anxiety, and depression that may have negative effects on the patient’s mental well-being and/or health outcome (Geense et al, 2016). While there is a lot of support for the patient by the healthcare professionals, there is a tremendous lack of support for their primary caregivers, their parents.

Goal: To create an online support group for parents, who may be lacking support, so that they can connect with other parents facing their same difficult situation, mental health counselors, and parents of chronic-illness survivors.

Methods: The website will only be accessible to the parents of these patients through an access code which corresponds to the hospital in which they have been admitted. This, along with a liability waiver for the information shared, will ensure that the website is safe and secure for the users. Members will be added to a specific channel which corresponds to their diagnosis. They will be able to create their own profile on which they can provide all information about themselves that they choose (i.e. hospital, diagnosis, age, etc.). Website users, in addition to being part of the “general parents” channel they are added to at sign up, can add themselves to a specific “moms only” or “dads only” channel. When the parents use the website, they will be able to post status updates about their situation, diagnosis, or treatment in order to receive support. Additionally, they will be able to comment on or “like” posts by other parents in order to support them. If users are in need of additional support, they will have the opportunity to consult a mental health counselor via telemedicine. Through this, users can chat with mental health counselors via a secure chat room or video chat. If members are in need of additional person-to-person counseling, they will be able to make an appointment to visit a mental health counselor near them using this site. The website will feature spotlight interviews with parents of children currently in remission or thriving with their disease. This allows the parents to receive support through mentors that are currently on the other side of the diagnosis.

Results/Conclusions: The use of this website in order to seek and give support should allow for less anxiety and depression for parents/guardians of children facing chronic illnesses. Parents who receive support are more likely to have reduced feelings related to anxiety (Ireys et al, 2001). This online support system will hopefully add needed support for those who are struggling mentally with their child’s diagnosis. The website will improve not only the mental health of the parents but of the child as well. This will hopefully improve the prognosis of the children whose parents are being supported through the website.

Geense, Wytske W., et al. “Online support program for parents of children with a chronic kidney disease using intervention mapping: a development and evaluation protocol.” JMIR research protocols 5.1 (2016).

Ireys, Henry T., et al. “Maternal outcomes of a randomized controlled trial of a community-based support program for families of children with chronic illnesses.” Archives of pediatrics & adolescent medicine 155.7 (2001): 771-777.