The pediatric diagnostic odyssey is a period of uncertainty and emotional turmoil for families, often characterized by multiple minor medical procedures (such as venipuncture) that children may find distressing. Interventions to reduce distress are rarely offered, despite evidence that this is crucial both for avoiding anticipatory anxiety before future procedures and for improving healthcare compliance in adulthood. We interviewed ten mothers of children with neuromuscular disorders, asking about their perceptions of their child's experiences with different medical procedures, the emotional impact of the diagnostic odyssey, implications of obtaining a diagnosis, and interactions with healthcare providers. We coded interviews in ATLAS.ti (version 7.0) based on a priori and emergent themes, and analyzed them based on the principles of interpretive description. We found that predicting and assessing children's reactions to procedures is challenging; parents reported non-invasive procedures such as x-rays were distressing for some children, and that providers did not detect subtle indicators of distress. Parents valued obtaining a diagnosis because it validated their concerns, enabled planning for the child's future healthcare needs, and allowed access to established support networks. This study suggests that healthcare providers can improve the experience of the diagnostic odyssey by validating family concerns and connecting them to support services that are available without a diagnosis.

No abstract

This article describes a 34-week pilot project aimed at improving health care service delivery for adolescents by offering youth a distinct role as advisory board members who help shape policy, provide feedback, guidance, and direction to a school-based health center (SBHC) program in Boston. Freshmen were recruited to participate in a Youth Advisory Board Project that included weekly afterschool meetings. Adult supervision was provided by SBHC staff that included 2 clinical social workers and 1 youth empowerment specialist. Through this effort, students were (1) trained in nonprofit board development and governance structures; (2) urged to identify gaps in services; (3) taught to select, prioritize, and implement action projects; and (4) offered clinical support around personal issues. Students brought a wealth of life experiences, knowledge of teen attitudes, information regarding trends in risk-taking behaviors, and feedback about experiences in the SBHC. In addition, their increased awareness of the SBHC service elements led to identification of obstacles to youth participation in care, feedback regarding positive and negative health care experiences within the SBHC, as well as with external health care providers, and ideas about unrecognized needs leading to gaps in services. This experience demonstrated that young health care consumers, with support, can focus their attention and begin to utilize analytical thinking skills to shape health outcomes and inform service delivery.

The prevention of CAUTI is an important opportunity for nurse leaders to engage clinical nurses in meaningful improvement efforts. Clinical nurses are best positioned to examine urinary catheter insertion workflow and to suggest improvements in avoiding use and improving placement and maintenance. To engage clinical nurses in CAUTI prevention, nurse leaders should focus on how urinary catheters expose patients to potential harm, involve nurses in designing and implementing practice changes, and provide local data to show the impact of nursing practices on patient outcomes.