The experiences of parents of children with disabilities receiving healthcare services: Negative emotions and associated situations

Purpose: To explore the negative emotions expressed by parents of children with disabilities when describing their experiences with pediatric health care. Methods: Quotes mentioning negative emotional experiences and the situations in which these arose were identified in 13 transcribed focus group conversations involving 65 Canadian parents of children with neurodevelopmental disabilities. Data were analyzed using content analysis. Results: There were 106 mentions of negative emotional experiences, including stress, frustration, trauma, upset, anger, emotional exhaustion, and fear. Common situations associated with these experiences included being given unwanted responsibilities, waiting for services/appointments, not being listened to, and being treated disrespectfully. Stress and frustration were associated with unwanted responsibilities, not being listened to, and waiting while at scheduled appointments, whereas trauma, upset, anger, and fear were associated primarily with being treated disrespectfully. Negative emotions were considered to arise from parents' societally based expectations about how they would be treated in health care. Conclusions: Parents expressed strong negative emotions, indicating a lack of family-centered care in their experiences with pediatric healthcare services. Service providers can reduce the likelihood of negative emotional experiences by gauging the level of involvement desired by parents, listening carefully and sensitively, and acting with respect and understanding.