PHILADELPHIA — Managing the symptoms of illness in a child who requires one or more medical technologies — including tracheostomies, feeding tubes and ventilators — might require more education than formerly thought because caregivers may have varying definitions of health, according to a recent presentation at the annual meeting of the American Association of Nurse Practitioners.
“For any health care provider, having an awareness of the family situation is important,” Regena Spratling, PhD, RN, CPNP, from the school of nursing at Georgia State University, said in an interview with Infectious Diseases in Children. “Although the child may have these technologies, they also contribute to the parent’s overall physical, emotional and mental issues.”
To increase the knowledge and awareness of this unique demographic in health care providers and to identify the needs of families and caregivers in managing a child’s symptoms, Spratling conducted a study that included primary caregivers of children who required medical technology in the southeastern United States. The researcher met with families and used a combination of qualitative interviews and quantitative instruments to assess the specific needs of these families.
Information in these questionnaires included caregiver and child characteristics, the functional status of the child, health-related quality of life for the child and the parent’s ability to manage the child’s symptoms. Although the questionnaire was standard in nature, Spratling said that adjustments were needed because of the parental perceptions of these children and their health.
“These families really consider the children well,” Spratling said. “They’re at home with all these medical issues, but since they’re not sick and they’re not in the hospital, the families considered them well.”
The average age of the child who required medical technology was 5 years and 8 months, and these children demonstrated a low quality of life on the Functional Status II-Revised questionnaire (FSII-R) (mean score = 66; range: 33-100). Additionally, the general health perception of these children demonstrated low scores, with a mean score of 47 points (range: 13-73).
However, the caregivers’ beliefs of self-efficacy in managing the child’s symptoms was high (mean = 37; range: 27-41), despite the fact that if many of the symptoms or difficulties were managed differently, hospital and ED visits could have been avoided. Many of these caregivers receive education on their child’s care; however, educational resources are not available after their discharge from a hospital or ED.
After getting this information from the families, Spratling’s goal is ultimately to develop an intervention so that these families can have education available for them at home as well as to create online resources and models. – by Katherine Bortz
Spratling R, et al. Parent’s symptom management for their children who require medical technology. Presented at: American Association of Nurse Practitioners National Conference; June 20-25, 2017; Philadelphia.
Disclosure: Spratling reports no financial disclosures. Recruitment, data collection and analysis are ongoing at the time of publication.