Needs and Research Priorities for Young People with Spinal Cord Lesion or Spina Bifida and Their Caregivers: A National Survey in Switzerland within the PEPSCI Collaboration

Abstract

The aim of this study was to describe the needs and research priorities of Swiss children/adolescents and young adults (from here, “young people”) with spinal cord injury/disorder (SCI/D) or spina bifida (SB) and their parents in the health and life domains as part of the international Pan-European Pediatric Spinal Cord Injury (PEPSCI) collaboration. Surveys included queries about the satisfaction, importance, research priorities, quality of life (QoL), and characteristics of the young people. Fifty-three surveys with corresponding parent-proxy reports were collected between April and November 2019. The self-report QoL sum scores from young people with SCI/D and SB were 77% and 73%, respectively. Parent-proxy report QoL sum scores were lower, with 70% scores for parents of young people with SCI/D and 64% scores for parents of young people with SB. “Having fun”, “relation to family members”, and “physical functioning” were found to be highly important for all young people. “Physical functioning”, “prevention of pressure injuries”, “general health”, and “bowel management” received the highest scores for research priority in at least one of the subgroups. As parents tend to underestimate the QoL of their children and young people prioritized research topics differently, both young peoples’ and caregivers’ perspectives should be included in the selection of research topics.

Descriptive Analysis of Surgical Outcomes and Stoma Formation for Treating Sacral and Anal Pressure Injuries in Spinal Cord Injury: A Retrospective Study of Selected Cases

“…Multi-disciplinary teams, comprising doctors, nurses, and physical therapists, play a pivotal role in making informed decisions regarding SCI and stoma formation. These decisions are based on a combination of existing literature evidence ( Allin et al, 2020 ; Benninger et al, 2022 ; Küçükakça Çelik & Taylan, 2023 ; McColl et al, 2012 ), their collective experience, and the preferences and wishes of the patients. However, not all SCI-affected individuals receive adequate information.…”

Caregivers’ Knowledge, Attitude, and Practice towards Pressure Injuries in Spinal Cord Injury at Rehabilitation Center in Bangladesh

“…A study on various aspects of caregivers' lives showed age and educational status have a significant relationship among them [ 26 ]. In contrast, caregivers' educational attainment varied considerably in terms of proportions at the higher education level [ 33 ].…”

“…Nowadays, the rehabilitation concept has shifted towards a more patient-centered approach. There is evidence to suggest that including patients and caregivers in a study may improve its quality and ensure its applicability and usefulness [ 33 ]. In this regard, caregivers need additional continuing education and training programs on PI prevention and care that may influence positive attitudes and eventually result in successful PI prevention and care practice.…”