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Health care encounters are stress-inducing events across the lifespan. Research highlights the impact of hospitalization on children and suggests methods to facilitate their communication of these experiences to guide health care professionals. Children with special health care needs and disabilities are an overlooked population whose experiences of health care are often unheard of due to idiosyncrasies and exceptionalities. This qualitative study used medical play, body mapping, and interviews with five school-age children who have both special health care needs and disabilities to seek their perceptions of their health care experiences and how these experiences impact them. Inductive and visual analyses yielded three themes pertaining to perceptions of their health care experiences: 1) This is my body, 2) I know the health care environment, and 3) I understand medical treatment. Three themes emerged regarding the impact of these experiences: 1) My diagnosis affects me, 2) I take the good and the bad, and 3) I hurt, and I cry. Findings indicated participants' health care perceptions and impacts were enhanced by combining child-centered data collection methods. Health care professionals may adopt the shared modes to better understand unique realities/perspectives of children's health care experiences to enhance the quality of care provided to all children
Keywords: Children, special health care needs, disabilities, child life.
Children have received health care in hospitals since the days of the American In dustrial Revolution. The pediatric health care system has moved from multiple patient-bed units without parental presence to limited parental visitation to modern-day single-patient rooms and family-centered care where parents are included in medical decision-making (Thompson, 2009).
Winzer (1993) provided insight into the care of children with disabilities during the early days of health care provision in hospitals. The prevalent medical model deemed the child's disability a deficit that required special education interventions provided in separate settings by specialists (Gelzheiser, 1987). Despite emerging medical diagnoses, medical and educational personnel were susceptible to prevailing social and religious judgments regarding individuals with disabilities, which included various superstitions and myths. These factors shaped the development of the institutional complex that emerged, dictating who was institutionalized, where, for how long, and what life in the institution was like. In 1975, children with disabilities, formerly institutionalized for care, were emancipated to live at home with...