Exploring Informational Needs of Parents of Children with Intestinal Failure: A Thematic Analysis.

PURPOSE: Information seeking has been observed to be important for the coping and empowerment of parents of children with rare diseases. This study was conducted to understand the education needs of families of children with pediatric intestinal failure (IF) and how technology might be effectively leveraged to address these needs. DESIGN AND METHODS: A qualitative methodology using thematic analysis was utilized. Purposeful sampling was adopted to recruit 10 parents/caregivers of children with IF. Participants participated in a 1:1 semi-structured interview. Interviews were recorded, transcribed and themes identified through open and focused coding. RESULTS: Four themes emerged: (1) reliable electronic or printed information resources relevant to their child's unique needs were lacking; (2) an educational program with in-person and hands-on learning was preferred for transition to home; (3) practical and relatable information was valued over medical knowledge as children's needs evolved; and (4) creation of electronic resources would be useful for information seeking and sharing. CONCLUSION: To cope with the responsibilities of caring for a child with IF, participants sought information beyond what they received. Participants preferred a blended approach of care team discussions and electronic tools for receiving knowledge and skills. Parents' connections with other caregivers was important for practical day-to-day management information, as well as supporting their well-being. PRACTICE IMPLICATIONS: Development and implementation of accessible digital resources with emphasis on practical information is required. Beyond medical and practical informational needs, building resilience and supporting psychologic needs for parents/caregivers of children with IF emerged as important needs to address.

Assessment of Malnutrition Risk in Canadian Pediatric Hospitals: A Multicenter Prospective Cohort Study.

OBJECTIVE: To assess the prevalence, causes, and consequences of malnutrition, as well as the evolution of nutritional status, in Canadian pediatric health care institutions. STUDY DESIGN: In this multicenter prospective cohort study, a total of 371 patients were recruited from pediatric hospitals in 5 Canadian provinces. Subjects were aged 1 month to 18 years; admitted to a medical, surgical, or oncology ward; and had a planned hospital stay of >48 hours. Data on demographics, medical condition, anthropometric measures, and dietary intake were collected. The Screening Tool Risk on Nutritional Status and Growth (STRONGkids) and Subjective Global Nutritional Assessment (SGNA) were applied at admission. Malnutrition was defined as a weight-for-age, height-for-age, body mass index-for-age, or weight-for-length/height z score <-2 SD. RESULTS: Among 307 subjects (median age, 5.3 years; median length of stay, 5 days), 19.5% were malnourished on admission. Both STRONGkids and SGNA classifications were associated with baseline nutritional status. Mean weight-for-age z score was lower at discharge compared with admission (-0.14 vs -0.09; P < .01), and nearly one-half of all patients lost weight during their hospital stay. Only one-half of the children who were malnourished or screened as high risk of malnutrition were visited by a dietitian during their stay. The percentage of patients who lost weight during hospitalization was significantly greater in the group not visited by a dietitian (76.5 vs 23.5%; P < .01). CONCLUSION: Nutritional status deterioration and malnutrition are common in hospitalized Canadian children. Screening tools, anthropometric measurements, and dietitian consultation should be used to establish adequate nutritional support.