RESUMO
Introduction: PICU hospitalization can have a profound impact on child survivors and their families. There is limited research on children's long-term recovery within the context of the family following critical illness. This study aimed to explore children's and parents' perceptions of long-term psychological and behavioral responses within the context of the family one year following PICU hospitalization. Materials and Methods: Caring Intensively is a mixed methods multi-site prospective cohort study that aims to examine children's psychological and behavioral responses over a 3-year period following PICU hospitalization. In this study, part of the qualitative arm of Caring Intensively, an interpretive descriptive design was used to explore children's recovery one year post-discharge. Purposive sampling was used to select 17 families, including 16 mothers, 6 fathers, and 9 children. Semi-structured, audio-recorded interviews were conducted. Data were analyzed iteratively using the constant comparison method. Results: Families described efforts to readapt to routine life and find a new normal following PICU hospitalization. Finding a New Normal consisted of four major themes: (1) Processing PICU Reminders and Memories, (2) Changing Perceptions of Health and Illness, (3) We Are Not the Same, and (4) Altered Relationships. Participants described significant emotional and behavioral changes during the year following discharge. The psychological impact of individual family members' experiences led to changes in their sense of self, which affected family dynamics. PICU memories and reminders impacted participants' perceptions of childhood health and illness and resulted in increased vigilance. Parents and siblings demonstrated increased concern for the child survivor's health, and the experience of long absences and new or altered caregiving roles resulted in changes in relationships and family dynamics. Conclusion: PICU hospitalization impacted the psychological well-being of all family members as they sought to re-establish a sense of normalcy one year following discharge. Parent and child experiences and responses were closely interconnected. Findings highlight the importance of increased follow-up care aimed at supporting the family's psychological recovery.
RESUMO
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.