TOwards enhancing Paediatric Intensive Care for Children with Medical Complexity (ToPIC CMC): a mixed-methods study protocol using Experience-based Co-design.

INTRODUCTION: Advances in medical technology and postoperative care have led to increased survival of children with medical complexity (CMC). Parents of CMC develop substantial caregiver expertise and familiarity with paediatric intensive care unit (PICU) staff and treatment procedures which may give rise to tensions regarding respective roles, caretaking preferences, treatment goals and expected outcomes. A therapeutic alliance built through strong partnerships constitutes the foundation of patient and family-centred care (PFCC), contributing to improvements in experiences and outcomes. Yet acute care settings continue to struggle with integrating PFCC into practice. This study aims to enhance PFCC for CMC in the PICU using an innovative approach to integrated knowledge translation. METHODS: A mixed-method concurrent triangulation design will be used to develop, implement and evaluate PFCC practice changes for CMC in the PICU. Qualitative data will be collected using an Experience-based Co-design (EBCD) approach. Parents, CMC and staff will reflect on their PICU care experiences (stages 1 and 2), identify priorities for improvement (stage 3), devise strategies to implement changes (stage 4), evaluate practice changes and study process, and disseminate findings (stage 5). The quantitative arm will consist of a prepractice and postpractice change evaluation, compared with a control site. Analysis of qualitative and quantitative data will provide insights regarding the impact of PICU practice changes on PFCC. ETHICS AND DISSEMINATION: The McGill University Health Centre Research Ethics Board (Ref. #2019-5021) and the Hospital for Sick Children Research Ethics Board (Ref. #1000063801) approved the study. Knowledge users and researchers will be engaged as partners throughout the study as per our participatory approach. Knowledge products will include a short film featuring themes and video/audio clips from the interviews, recommendations for improvements in care, and presentations for healthcare leaders and clinical teams, in addition to traditional academic outputs such as conference presentations and publications.

Exploring the experiences of parent caregivers of children with chronic medical complexity during pediatric intensive care unit hospitalization: an interpretive descriptive study.

BACKGROUND: Children with medical complexity (CMC) account for an increasing proportion of pediatric intensive care unit (PICU) admissions across North America. Their risk of unscheduled PICU admission is threefold compared to healthy children, and they are at higher risk of prolonged length of stay and PICU mortality. As a result of their sophisticated home care needs, parents typically develop significant expertise in managing their children's symptoms and tending to their complex care needs at home. This can present unique challenges in the PICU, where staff may not take parents' advanced expertise into account when caring for CMC. The study aimed to explore the experiences of parents of CMC during PICU admission. METHODS: This interpretive descriptive study was performed in the PICU of one Canadian, quaternary care pediatric hospital. Semi-structured interviews were conducted with 17 parent caregivers of 14 CMC admitted over a 1-year period. RESULTS: Parents of CMC expected to continue providing expert care during PICU admission, but felt their knowledge and expertise were not always recognized by staff. They emphasized the importance of parent-staff partnerships. Four themes were identified: (1) "We know our child best;" (2) When expertise collides; (3) Negotiating caregiving boundaries; and (4) The importance of being known. Results support the need for a PICU caregiving approach for CMC that recognizes parent expertise. CONCLUSIONS: Partnership between staff and parents is essential, particularly in the case of CMC, whose parents are themselves skilled caregivers. In addition to enhanced partnerships with health care professionals, needs expressed by parents of CMC during PICU hospitalization included improved communication with staff, and more attention to continuity of care in the PICU and across hospital services. Parent-staff partnerships must be informed by ongoing communication and negotiation of caregiving roles throughout the course of the child's PICU hospitalization.

Nurses' perceptions of caring for parents of children with chronic medical complexity in the pediatric intensive care unit.

OBJECTIVES: The aim of this study was to explore nurses' perceptions of caring for parents of children with medical complexity [CMC] in the pediatric intensive care unit [PICU]. RESEARCH METHODOLOGY: An interpretive descriptive design was used to explore nurses' perceptions of caring for parents of CMC in the PICU. Semi-structured interviews were conducted with ten nurses. Interview data were collected and analyzed using qualitative inductive content analysis. FINDINGS: Nurses revealed that their experiences of caring for parents of CMC evolved over time as they learned to tailor a caregiving partnership based on trust. Although various circumstances could challenge this partnership, nurses strove to maintain and nurture it through self-reflection and optimal communication. Three themes were identified in the data that captured PICU nurses' perceptions: (i) "Thrown to the wolves": Adjusting to a new caregiving role; (ii) "Getting to know each other": Merging caregiving roles; (iii) "Keeping connected": Working to preserve the partnership. CONCLUSIONS: Findings shed new light on the importance of a trusting nurse-parent partnership in caring for parents of CMC in the PICU. Results will be used to develop strategies to enhance this partnership, with the goal of supporting parents and staff in their caregiving roles.

Perceptions of a peer learning approach to pediatric clinical education.

With changing trends in the acute pediatric setting, there is concern that nursing students are not provided with sufficient opportunities to develop required clinical competencies. Peer learning can assist students in achieving learning objectives through efficient and effective use of limited resources. In this study the perceptions of students and clinical instructors in their use of peer learning are described. A qualitative descriptive design with semi-structured interviews was used. A convenience sample included nursing students (n=10) and clinical instructors (n=2). Participants had overall positive experiences with formalized peer learning. The novelty of a learning approach, support, communication and the facilitation of learning were the common emerging main themes; with several subthemes also identified. The results highlighted how the learning process was influenced by the students' status as novice nurses and how peer learning provided much needed emotional and physical support. Implications for clinical education are discussed.