| 1. |
- Alriksson-Schmidt, Ann I, et al.
(författare)
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Site, frequency, and duration of pain in young children with spina bifida
- 2021
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Ingår i: Journal of Pediatric Rehabilitation Medicine. - 1874-5393. ; 14:4, s. 571-582
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: To investigate the: (1) percent of children with spina bifida (SB) complaining of pain, (2) frequency, duration, and cause of pain by sex, level of lesion type of SB, and ambulation status, (3) body sites reported to hurt, by variables in objective 2, and (4) associations between physical and mental/emotional health between caregiver and child.METHODS: Cross-sectional study of 101 caregivers of children (3 to 6 years old) with SB. Survey data and information from medical records were included. Pearson chi-square, one-way ANOVA, Fisher's exact test, logistic regressions, and bivariate correlations were used.RESULTS: Seventy percent reported that their child complained of pain, which did not significantly differ by sex, level of lesion, type of SB, or ambulation status. Most (86%) were reported to have experienced pain for less than 24 hours. The most frequently reported pain site was the head, followed by the abdomen and the lower body. Number of pain sites was moderately correlated with frequency of pain complaints. Correlations between how caregivers reported their own physical/mental/emotional health and how they rated that of their children ranged from weak (r = 0.22) to moderate (r = 0.55).CONCLUSION: Almost seven of ten children reportedly complained of pain ranging from at least once a month to everyday. Pain needs to be routinely assessed and treated in this population.
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| 2. |
- Alriksson-Schmidt, Ann, et al.
(författare)
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Pain and health status in adults with myelomeningocele living in Sweden
- 2018
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Ingår i: Journal of Pediatric Rehabilitation Medicine. - 1874-5393. ; 11:4, s. 255-264
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: To increase knowledge about pain and general health in adults with myelomeningocele, a health condition with several risk factors for pain such as musculoskeletal deformities, shunt dysfunctions, bowel problems, and urinary tract infections/stones. METHODS: Descriptive correlational pilot study (N= 51, 53% males). Chi-square tests were used to test associations among presence, impact, severity, and pain site in relation to sex and age. ANOVA was used to analyze associations between sex, age, and general health (today). RESULTS: Seventy-three percent reported pain in the past four weeks. No significant sex or age differences were associated with the presence of pain. Women were significantly more likely to report that pain interfered with work, ‡2(1, N= 41) = 5.53, p= 0.02. There were significant main effects for sex and age on general health (today), F(2, 44) = 5.63, p= 0.007, adjusted R2= 0.17. Women scored lower on general health (today) (mean = 63.58) than men (mean = 76.33). Older individuals reported worse general health (today) than did younger (B=-0.89, t=-2.79, p= 0.008). CONCLUSIONS: Pain was frequent, and pain sites differed widely. Women were more likely to report that pain interfered with work, and scored lower on health, as did older persons.
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| 3. |
- Dosa, Nienke P, et al.
(författare)
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Spina bifida global learning collaborative : Educating the next generation of clinicians, researchers, and advocates
- 2023
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Ingår i: Journal of Pediatric Rehabilitation Medicine. - : IOS Press. - 1874-5393 .- 1875-8894. ; 16:4, s. 657-663
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: This project aimed to launch an international learning community to guide the development of a spina bifida (SB) curriculum for global health trainees.METHODS: Using a descriptive study design, a convenience sample of SB curricula were identified in 2022-23 by members of the Spina Bifida World Congress Outreach Committee and evaluated during a series of monthly Zoom calls to discuss SB education in a global health context. Participants included (1) leadership from the ReachAnother Foundation, (2) invited panelists from the Spina Bifida World Congress Global Health Symposium, and (3) global health students and preceptors. Education initiatives in Ethiopia, Sweden, Argentina, Ecuador, and the United States were evaluated vis-à-vis format and content.RESULTS: All of the education initiatives referenced the framework of the World Health Organization International Classification of Functioning, Disability and Health. Formats varied and included both virtual and interactive workshops, print materials, videos, and guides for small group discussion. Content addressed four domains: Folate Prevention, Neurosurgical Training, After Care, and Data Collection. A multidisciplinary approach, partnerships with families, and workforce pipeline training were identified as guiding themes for educating the next generation of SB researchers and clinicians in global health settings.CONCLUSION: The Spina Bifida Global Learning Collaborative is a transnational group of advocates, clinicians, and investigators whose mission is the advancement of SB-related global health education. Lessons learned from the collaborative are being leveraged to develop a global health curriculum for learners, which may improve services for individuals with SB around the globe.
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| 4. |
- Ertzgaard, Per, 1958-, et al.
(författare)
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Oculomotor screening and neuro-visual rehabilitation following pediatric brain tumor resection
- 2023
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Ingår i: Journal of Pediatric Rehabilitation Medicine. - : Ios press. - 1874-5393 .- 1875-8894. ; , s. 1-7
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Tidskriftsartikel (refereegranskat)abstract
- Visual difficulties are common after brain tumors, despite a lack of visual complaints at diagnosis. These include difficulties with eye movements, visual coordination, vergence, accommodation, and photophobia, in addition to more obvious problems such as visual field defects.This case report presents the results of a thorough neuro-visual evaluation in a boy with sequelae after a brain tumor including intermittent double vision that was not explained by routine visual examination. Subjective complaints included poor reading perseverance, intermittent blurred and double vision, headache around the eyes when performing near activities, less efficient eye movement behavior in reading tasks, and increased sensitivity to visual motion. The patient participated in a multidisciplinary visual rehabilitation program that included reading glasses with prism compensation and tinted glasses, as well as training with the aim of improving eye teaming, near vision functions, and perseverance in eye movements.The patient responded quickly to the vision therapy program, with positive changes after just four weeks. Repeated neuro-visual evaluations over eight months showed remarkable improvements that were stable over time. This encouraging case report supports the notion that neuro-visual evaluation and rehabilitation should be included in the follow-up of patients after brain tumors.
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| 5. |
- Ong, Katherine S, et al.
(författare)
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Parents' report on the health care management of spina bifida in early childhood
- 2022
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Ingår i: Journal of Pediatric Rehabilitation Medicine. - 1874-5393. ; 15:4, s. 621-631
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: This study aimed to describe health care use by type of health providers and care settings visited by children with spina bifida (SB) and to compare this use between children with and without a shunt.METHODS: Health care use data were extracted from a larger study on the health and functioning of children with SB aged 3-6 years. The present study focused on the medical information subsection of a parent-reported survey related to SB care, general care, specialty care (e.g., neurosurgery), emergency care, and complications related to SB and shunts.RESULTS: Parents of 101 children with SB participated. Most of the children were male with myelomeningocele and had a shunt. They visited a health care provider for SB care an average of 7.4 times and a specialist an average of 11.9 times in the previous 12 months. Most visited a multidisciplinary clinic for SB-related care and a private physician's office for general care. Children with a shunt had more SB-related medical visits, more visits to a specialist, and a greater number of different types of specialists than those without it. Frequency of emergency room visits did not differ between the two groups. Health providers informed parents about headaches, vomiting, and fever as signs of complications, and some parents did report shunt-related complications.CONCLUSION: SB is a complex medical condition requiring that children receive medical care from various medical specialists, especially for children with a shunt. Findings on health care use suggest high levels of monitoring and care coordination that parents navigate to care for their child.
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| 6. |
- Persson, Marika, et al.
(författare)
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Daily time management in children with spina bifida
- 2017
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Ingår i: Journal of Pediatric Rehabilitation Medicine. - 1874-5393 .- 1875-8894. ; 10:3-4, s. 295-302
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: Spina bifida (SB) often results in a complex disability and can also cause cognitive dysfunction. No previous study has investigated the ability to adapt to time in children with SB. This ability is crucial for an individual's possibility to develop autonomy in life. The purpose of this study was to investigate whether children aged 10-17 with SB have lower time-processing abilities than typically-developing children, and to describe the profile of time-processing in children with SB. METHOD: Participants comprised a consecutive sample of 21 children (drawn from a geographical cohort of 45) aged 10-17 years (mean: 14 years, SD: 2 years); 13 were boys. The instruments used were KaTid-Y, Time-S, and Time-P. RESULTS: The children with SB had lower time-processing abilities than typically-developing children (52.4% under -2SD), particularly difficulties to orient to and to estimate objective time, to understand time perspectives and with time planning. They also self-rated low use of strategies to adapt to time. The parents rated their children as having extensive difficulties in daily time management. CONCLUSIONS: The low time-processing ability found in children with SB is likely to be an important contributing factor to low autonomy and independence.
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| 7. |
- Pettersson, Katina, et al.
(författare)
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Prevalence and goal attainment with spinal orthoses for children with cerebral palsy
- 2019
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Ingår i: Journal of Pediatric Rehabilitation Medicine. - : IOS PRESS. - 1874-5393 .- 1875-8894. ; 12:2, s. 197-203
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: Analyze the goals for treatment and attained goals for spinal orthoses in children with cerebral palsy (CP), and describe the use of spinal orthoses in relation to age, sex, gross motor function, and scoliosis.METHODS: Cross-sectional data for all children born between 2000 and 2014 and registered in the Swedish CP registry were analyzed in relation to age, sex, Gross Motor Function Classification System (GMFCS), and scoliosis. Treatment goals were to 1) prevent deformity; 2) improve stability/positioning; 3) improve head control; and 4) improve arm/hand function.RESULTS: Overall, 251 of the 2800 children (9%) used spinal orthoses, and the frequency increased significantly with age and GMFCS level; 147 of the 251 children had scoliosis. Several treatment goals were reported for most children. The most common goal was improved stability/positioning (96%), followed by head control (51%) and arm/hand function (38%). Only one third of the children used spinal orthoses to prevent deformities. The rate of goal attainment was 78-87% for the functional outcomes and 57% for the prevention of deformities.CONCLUSION: Although the goal of using spinal orthosis to prevent curvature progression remains important, we found that its functional benefits (stability, head control, arm/hand function) were of greater importance.
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| 8. |
- Roaldsen, Kirsti Skavberg, et al.
(författare)
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Pediatric spinal cord injury rehabilitation : A protocol for an international multicenter project (SINpedSCI)
- 2022
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Ingår i: Journal of Pediatric Rehabilitation Medicine. - : IOS Press. - 1874-5393 .- 1875-8894. ; 15:2, s. 395-403
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: Children and adolescents (<18 years old) who sustain a spinal cord injury (SCI) should ideally be managed in specialized rehabilitation services. This project aims to describe the organization of pediatric SCI in ten rehabilitation units in seven countries and to qualitatively explore psychosocial aspects of adolescents living with SCI. METHODS: A multicenter cross-sectional project is planned, using quantitative (web survey) and qualitative (interview) methods in ten rehabilitation units from Norway, Sweden, United States, Israel, PR China, Russia and Palestine. Individual interviews will be conducted with >= 20 adolescents aged 13-17 years at least 6 months post rehabilitation. RESULTS: Units involved will be described and compared, according to funding, attachment to an acute SCI unit, catchment area, number of beds, admittance and discharge procedures, availability of services, staff/patient ratio, content and intensity of rehabilitation programs, length of stay, measurement methods, follow-up services, health promotion services, and pediatric SCI prevention acts. The semi-structured interview guide will include experiences from acute care and primary rehabilitation, daily life, school, contact with friends, leisure time activities, peers, physical and psychological health, and the adolescents plans for the future. CONCLUSION: Based on the present protocol, this project is likely to provide new insight and knowledge on pediatric SCI rehabilitation and increase the understanding of pediatric SCI in adolescents and their families internationally.
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| 9. |
- Roaldsen, K. S., et al.
(författare)
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Pediatric spinal cord injury rehabilitation: A protocol for an international multicenter project (SINpedSCI)
- 2022
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Ingår i: Journal of Pediatric Rehabilitation Medicine. - : IOS Press. - 1874-5393 .- 1875-8894. ; 15:2, s. 395-403
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: Children and adolescents (<18 years old) who sustain a spinal cord injury (SCI) should ideally be managed in specialized rehabilitation services. This project aims to describe the organization of pediatric SCI in ten rehabilitation units in seven countries and to qualitatively explore psychosocial aspects of adolescents living with SCI. METHODS: A multicenter cross-sectional project is planned, using quantitative (web survey) and qualitative (interview) methods in ten rehabilitation units from Norway, Sweden, United States, Israel, PR China, Russia and Palestine. Individual interviews will be conducted with >= 20 adolescents aged 13-17 years at least 6 months' post rehabilitation. RESULTS: Units involved will be described and compared, according to funding, attachment to an acute SCI unit, catchment area, number of beds, admittance and discharge procedures, availability of services, staff/patient ratio, content and intensity of rehabilitation programs, length of stay, measurement methods, follow-up services, health promotion services, and pediatric SCI prevention acts. The semi-structured interview guide will include experiences from acute care and primary rehabilitation, daily life, school, contact with friends, leisure time activities, peers, physical and psychological health, and the adolescents' plans for the future. CONCLUSION: Based on the present protocol, this project is likely to provide new insight and knowledge on pediatric SCI rehabilitation and increase the understanding of pediatric SCI in adolescents and their families internationally.
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