Creating opportunities for personal empowerment: Symptom and technology management resources (COPE-STAR) for caregivers of children who require medical technology.

Abstract

This research protocol addresses the development of web-based modules for the 'creating opportunities for personal empowerment: symptom and technology management resources' intervention with caregivers of children who require medical technology. The commonly experienced symptoms of fever and increased respiratory symptoms (coughing, wheezing, increased secretions), and the care of technologies (tracheostomy tubes, respiratory equipment and feeding tubes) are addressed in this nurse-led and nurse-developed intervention. The purpose of this study was to develop web-based intervention modules and obtain review by expert and caregiver reviewers using a systematic, structured process and form. The intervention includes evidenced-based, theory-based, modules that address the child's most common emotions and behavioural responses with the management of their symptoms and technologies using a web-based format. To establish fidelity of the intervention, expert and caregiver reviewers (e.g. caregivers of children with multiple complex chronic illnesses and technologies) will review the modules that will then be refined prior to feasibility testing. Funding for the study began in July 2018. The intervention development led by nurses entails an evidence-based literature review; development of scripts with appropriate health literacy level; and content by experts, photography, and videography; production of video modules and creation of a website for modules. This nursing intervention addresses the educational needs and skills considered essential and most applicable to caregivers of children who require medical technology to improve self-management of their child's symptoms and technology in the home setting. The information obtained from this study will be valuable to nursing, other healthcare providers and healthcare systems in planning and implementing programs and services for these children and for nurse researchers designing intervention studies for children with multiple complex chronic illnesses. This study is not designated as a clinical trial per NIH/NINR study and grant proposal guidelines.