Integration of child life services in the delivery of multi-disciplinary differences in Sexual Development (DSD) and Congenital Adrenal Hyperplasia (CAH) care.

INTRODUCTION: Multiple studies have demonstrated the benefit of incorporating certified child life specialist (CCLS) services in various aspects of pediatric care. Although the significance of psychosocial support of patients with Disorders of Sexual Development (DSD) and Congenital Adrenal Hyperplasia (CAH) is increasingly recognized, the involvement of CCLS services into the DSD and CAH multidisciplinary care model has yet to be described. OBJECTIVE: To evaluate the feasibility, acceptability, and patient and family experience of routinely incorporating CCLS services into the multidisciplinary DSD and CAH care model. STUDY DESIGN: As part of a quality improvement initiative, CCLS services were routinely incorporated in the multidisciplinary DSD and CAH clinics at our institution. Encounters for patients seen in clinic between July 2018 through October 2019 were reviewed for demographic information, DSD diagnosis classification, CCLS documentation, and whether an exam under anesthesia (EUA) was required due to an incomplete clinical exam. CCLS documentation was reviewed for assessments, interventions, whether patients tolerated their physical exams, time of CCLS services, and additional CCLS support beyond the physical exam. All patients were limited to one physical exam per clinic visit. RESULTS: Out of the 45 encounters with CCLS involvement, 42 (93.3%) exams were well-tolerated. CCLS assessments considered patient development, communication considerations, temperament, medical stressors, coping preferences, and patient preferences for activities and distractions. Interventions included preparing patients for their physical exams, encouragement before and during exams, addressing patient stressors, distractions and coping mechanisms, and advocating for the patient. No patients required an EUA. DISCUSSION: The CCLS aimed to provide families with a sense of control during clinic visits and teach them to advocate for themselves. The CCLS helped prepare and distract patients for their clinic visit and addressed the sensitive nature of the physical exam by focusing on the emotional and development needs of patients. CCLS contributions to a positive patient experience are consistent with multiple studies demonstrating the benefit of CCLS services for pediatric care. This quality improvement initiative ultimately helped to create a positive experience for patients and families. CONCLUSION: This study demonstrates the feasibility, acceptability, and positive impact of CCLS services in the delivery of patient and family-centered care for patients with DSD and CAH as part of the multidisciplinary team model.

The lived experience of pediatric burn nurses following patient death.

The purpose of this study is to describe the lived experience of pediatric burn unit nurses who have experienced the death of a patient. A qualitative phenomenological design was used for the interview and analysis. Methods were incorporated into the design to ensure reliability, consistency, and rigor. Using a semi-structured interview guide and phenomenological concepts, the investigators interviewed seven registered nurses who were employed in a pediatric burn unit. Data obtained were analyzed for common themes that emerged during examination of transcribed interviews. Four common themes of feelings were identified: 1) grief and sadness, 2) helplessness, 2) compartmentalization of feelings, and 4) lack of preparedness for dealing with situations involving the death of a pediatric patient. While nurses are emotionally supportive to patients and families, the emotional support available to nurses who are dealing with these situations is lacking. By developing individual coping strategies and seeking peer support, nurses attempt to deal with emotional situations faced in the workplace. Nurses, nurse educators, and administrators must understand the impact of nurses' grief following patient death. By understanding and validating their emotions, it is hoped that nurses will be supported in a way that will enhance a healthy professional environment and personal well-being.