Involvement of transition-age students with severe disabilities in their health care at school

The purpose of this qualitative study was to examine student involvement in specialized health care procedures at school for transition-age students with complex health care needs and severe disabilities. To investigate how students were involved, and beliefs about their involvement, a basic qualitative methodology that incorporated ethnographic and multiple-case study methods was utilized. Nine cases were selected through purposeful sampling. A case included a student and the student’s respective special education teacher, school nurse, classroom nurse or paraprofessional, and parents. Data were collected from demographic questionnaires, documents, observations, and interviews, and were analyzed case-by-case using an inductive coding approach. A cross-case synthesis was then conducted to identify themes. Although a majority of students were found to partially participate in their specialized health care procedures at school, individualized educational planning and systematic instruction were notably absent. Additionally, school personnel did not afford students with profound disabilities and significant behavior challenges opportunities to be involved in their health care. Overall, there was limited evidence of educational planning, goals, and systematic instruction to support student involvement in specialized health care procedures at school. Participants identified numerous obstacles based on students’ disability related deficits, but overwhelmingly reported valuing student involvement in specialized health care procedures as beneficial to students’ well-being. School personnel may have limited awareness of and/or knowledge in teaching self-care skills within the context of health procedures to students with complex health care needs and severe disabilities. Implications for research and practice are discussed based on this study’s findings and recommended practices