‘I Didn’t Know What Was Going to Happen’: Children’s and Young People’s Experiences and Their Involvement Before and After Selective Dorsal Rhizotomy

To explore experiences, expectations, and involvement of children and young people (CYP) in decision-making for selective dorsal rhizotomy (SDR) surgery, post-operative physiotherapy treatment and outcomes. A qualitative study design using one to one interviews. Five CYP (2 girls and 3 boys) participated, and interviews lasted between 45 min and 2 h. Data were analyzed using thematic analysis. Children and young people are reliant on their parents to make decisions and inform them of the SDR process. Experiences of living with cerebral palsy and its management are centered on their routine social, psychological, and physiological challenges. Individual characteristics and attributes of CYP have an impact on how they cope with the rehabilitation burden and adjust to their changing levels of function and participation. Although CYP reported that SDR offers them a greater ‘freedom to choose’ in how they participate in daily life, further consideration is required to meet their psychosocial needs, particularly in preparing for SDR and adjusting afterwards.</p

Is parental presence in the ambulance associated with parental satisfaction during emergency paediatric intensive care retrieval?: a cross-sectional questionnaire study

Objectives:  Quality standards for pediatric intensive care transport services in the U.K. state that at least one parent should be allowed to travel with their child during emergency transport to a PICU. We aimed to identify the reasons why parents do, or do not, accompany their child and whether there is an association between parental presence in the ambulance and their satisfaction with the transport. Design:  National cross-sectional parent questionnaire. Setting:  Pediatric Critical Care Transport (PCCT) teams and PICUs in England and Wales. Participants:  Parents of children transferred to one of 24 participating PICUs between January 2018 and January 2019. Interventions:  None. Measurements and Main Results:  A parent feedback questionnaire was completed by parents whose child received an emergency interhospital transfer. As part of the questionnaire, a brief nine-item scale was developed to summarize parental transport experience (ranging from 1 to 5). The association between parental presence in the ambulance and parental experience was analyzed. A total of 4,558 children were transported during the study. Consent was obtained from 2,838 parents, and questionnaires received in 2,084 unique transports (response rate: 45.7%). In 1,563 transports (75%), at least one parent traveled in the ambulance. Parents did not travel in 478 transports (23%) and, in most instances (442 transports; 93%), offered reasons (emotional, practical, and health-related) for declining to travel or explanations why they were not permitted to travel (mainly due to space restrictions). Most parents rated their experience with the retrieval teams very highly, and within this context, we found evidence of greater variability in experience ratings if parents were not present in the ambulance and if this was not their choice. Conclusions:  Most parents who completed questionnaires rated their experience with their PCCT team highly. Parental presence and choice to travel in the ambulance were associated with a more positive experience.</p