Children who require medical technology have multiple chronic conditions, and are part of the estimated total of 11 million children (15%) with special health care needs in the United States. This medical technology (e.g. tracheostomy and feeding tubes) enables children to live at home; however, the self- management of child?s care by informal caregivers (e.g. parents, foster/adoptive parents, grandparents) is intensive and specialized. Our preliminary research found that 37% of ED visits and hospitalizations for children requiring technology at home to be preventable, and are costly and disruptive to the children and families. Our work and others also found, caregivers (parents) of children with multiple chronic conditions doubt their beliefs in their ability to manage their child?s care, and experience anxiety and depressive symptoms. These caregivers often are low socioeconomic status, and thus health literacy is a concern to be addressed with interventions designed to help them manage their child?s care. The purposes of this study are to develop theory-based, health-literate, web-based modules for ?Creating Opportunities for Personal Empowerment: Symptom and Technology Management Resources? (COPE- STAR) intervention and conduct feasibility testing of COPE-STAR with informal caregivers of children ages 1 to 5 years who require medical technology at home.
Aim 1 will be content development of the web-based COPE-STAR intervention modules at appropriate health literacy levels and obtaining fidelity and usability through review by expert review and caregivers using a systematic, structured process and form. Six caregiver reviewers will review modules in the proposed study.
Aim 2 will be feasibility testing of a quasi-experimental one group design with measurements at baseline and at 4 weeks post- intervention in a sample of 30 caregivers (parent) of children ages 1 to 5 years who require medical technology. Caregiver acceptance and caregiver outcomes will also be examined for the web-based COPE-STAR intervention developed in Specific Aim 1. Data on recruitment results, attrition rates, usability, and caregiver satisfaction with the COPE-STAR intervention will be examined; initial data of the effectiveness of COPE-STAR in helping caregivers improve management of their child?s chronic condition, will include standard measures of family management of a child?s chronic conditions, caregivers? beliefs about caring for their child who requires medical technology, and caregiver anxiety and depressive symptoms. Findings will provide a foundation for future development of a randomized controlled trial to test the efficacy of COPE-STAR to improve caregivers? management of symptoms and technology at home for children who require medical technology and determine if COPE-STAR reduces avoidable ED visits and hospitalizations.
This application is responsive to PA-14-345 Self-Management for Health in Chronic Conditions (R15) to develop modules for caregivers (parents) of children who require medical technology. The proposed study aims are to develop and conduct feasibility testing of a theory-based, health-literate, web-based intervention, ?Creating Opportunities for Personal Empowerment: Symptom and Technology Management Resources? (COPE-STAR), designed to improve caregivers? management of the most commonly experienced symptoms and medical technology problems at home. Findings from this study will inform future interventions for these children, and other children with chronic conditions and special health care needs.
