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

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.

Parents' Perspectives of Closeness and Separation With Their Preterm Infants in the NICU.

OBJECTIVE: To discover parents' perceptions of closeness to and separation from their preterm infants in the NICU. DESIGN: Qualitative descriptive. SETTING: Urban Level III NICU. PARTICIPANTS: Twenty parents of preterm infants in the NICU. METHODS: After ethics approval, data were collected with a smartphone application created for this study. Parents recorded their descriptions of moments of closeness and separation over a 24-hour period in the NICU. Data were transcribed verbatim and content was analyzed. RESULTS: Five themes related to parents' perceptions of closeness and separation were identified: Having a role as a parent: Feeling autonomous and making decisions; Providing for and getting to know the infant: Feeding, holding, and interacting; Support from staff; Reluctantly leaving the infant's bedside; and NICU environment. CONCLUSION: Autonomy is a key element of a parent's perception of closeness. Staff in the NICU can facilitate autonomy by involving parents in the care of their preterm infants as much as possible to reinforce the parental role. Parents described leaving their infants' bedsides as very difficult.

Pain Experiences of Children and Adolescents With Osteogenesis Imperfecta: An Integrative Review.

OBJECTIVE: Pain is a commonly experienced symptom for children and adolescents diagnosed with osteogenesis imperfecta (OI). The purpose of this integrative review was to describe the pain experience of children and adolescents with OI as well as critically appraise the content and methods of studies assessing OI pain. METHODS: Five electronic bibliographic databases were searched. Published quantitative, qualitative, and/or mixed-method studies assessing pain in children and adolescents with OI were included and appraised. Constant comparison of the extracted data was used to synthesize themes. RESULTS: A total of 783 titles were identified, and 19 studies that met the inclusion criteria were included in this review. Study appraisal scores ranged from 25.0% to 83.3% using the Quality Assessment Tool. The majority of studies included assessed pain as a secondary outcome (63%) and less than half used moderately established or well-established tools (42%). Two themes were uncovered: "Pain is Present and Problematic" and "Issues with Pain Assessment." Key findings under each theme include: (1) the negative impacts of pain and the substandard use of pain management strategies; and (2) the lack of multidimensional and consistent pain assessments, as well as difficulties in assessing pain in younger children. DISCUSSION: Research on OI has focused very little on pain experience in children and adolescents, and there is no standard method of assessing pain. To better describe the pain experience of these patients, future research should focus on better characterizing OI pain with the use of age-appropriate valid, reliable, and multidimensional pain assessment tools.