Family Members' Perceptions of Their Psychological Responses One Year Following Pediatric Intensive Care Unit (PICU) Hospitalization: Qualitative Findings From the Caring Intensively Study

Abstract

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.

Parental Perception and Measured Functional Status Following Pediatric Critical Illness: A Secondary Analysis of the Survivor Outcomes Study

“…Although our study reflects a patient cohort followed through 2012, our findings regarding parent/guardian perspectives have implications for contemporary practice because the impact of pediatric critical illness on families has been constant over time (9,(23)(24)(25). For example, a 2006 systematic review of 115 studies identified five major categories of family impact: stressors including change in parental role, needs (e.g., physiologic, honest communication, proximity to child, support), psychological, physical, or social impact, coping, and intervention (25) that were again identified in a 2020 update to this review (9).…”

Träumen, Traumen und Belastungen begegnen

“…Angstgeprägte Vorstellungskraft füllt schnell Lücken des mangelhaft Verstehbaren. Reaktionen wie Erregung, Vermeidung oder Wiedererleben können pathologische Niveaus erreichen und das Leben der ganzen Familie über Jahre negativ beeinflussen 13 96 .…”

“…Ein Klinikaufenthalt, vor allem auf PICU, und häufig zu beobachtende emotionale und Verhaltensveränderungen wirken sich auf das psychische Wohlbefinden aller Familienmitglieder aus. Diese können noch Monate nach Entlassung bemüht sein, zumindest ein Gefühl von „Normalität“ wiederherzustellen 96 .…”

Visiting Policies and Parental Presence During PICU Admission: A Survey in French Units

“…A 2011 Italian study reported restricted visits for children in 76% of the PICUs (13). Further studies are needed on this population, especially details of long-term psychological impact (32).…”