Journal of Pediatric Rehabilitation Medicine

Understanding the level of fatigue experienced by adolescents and adults with cerebral palsy (CP) in low- and middle-income countries is crucial, as it can inform healthcare workers in the assessment, prevention, and management of fatigue for these individuals, similar to the approach taken in high-income countries. This study aimed to determine self-perceived fatigue and the level of accomplishments and satisfaction of activities and participation in daily life in adolescents and adults with CP compared with typically developing (TD) peers living in urban South Africa. The study also examined whether the outcome measures were associated within the CP cohort.

This case-control study included 31 adolescents and 30 adults with CP and TD peers matched for age, sex, and socio-economic status. Participants completed the Fatigue Severity Scale and Life-Habits Questionnaire.

Self-perceived fatigue was reported in 14/31 adolescents with CP, 6/31 TD adolescents, 9/30 adults with CP, and 8/30 TD peers. No differences in fatigue were observed between adults or adolescents with CP and TD peers. However, accomplishment and satisfaction scores were lower for adolescents (p < 0.001 and p = 0.016, respectively) and adults with CP (both p < 0.001) compared to TD peers.

Individuals with CP living in urban South Africa reported similar levels of fatigue as TD peers. Despite limitations in accomplishing life habits, adolescents and adults with CP reported to be independent in their daily activities and satisfied with their community participation, which was unrelated to fatigue.

Challenges in accessing comprehensive sexual and reproductive health (SRH) information and care leave many individuals with spina bifida (SB) vulnerable to unmet SRH needs, risking unfulfilling sexual experiences and increasing susceptibility to coercion and abuse. Accurate tools are essential to measure SRH knowledge and self-efficacy in adults with SB.

This study aimed to evaluate the internal consistency and construct validity of domains of a newly developed survey that assesses SRH knowledge and self-efficacy in partner and provider discussions among adults with SB.

The SRH survey, recently validated for content, was distributed via REDCap with support from the National Spina Bifida Association (SBA) through social media, including SBA's Facebook, and the Adult Advisory Committee. Responses were de-identified, and each participant received a unique survey ID. Internal consistency of the self-efficacy subscales was assessed using Cronbach's alpha and Kuder-Richardson Formula 20 (KR-20) was used for the knowledge scale. Principal component analysis (PCA) evaluated scale structures. Analyses were conducted using SPSS.

Ninety participants completed the SRH survey. Most respondents were female (75.5%). Participants’ ages ranged from 18 to 77 years (mean = 40.47, SD = 12.897) and 85.6% identified as non-Hispanic White. Both the self-efficacy scale for partner discussions (α = 0.914, five items) and provider communication (α = 0.958, eight items) had excellent internal consistency. PCA supported construct validity, with a single-factor structure explaining 75.3% of variance for partner communication and 78.0% for provider communication, indicating that each set of items measures a cohesive underlying construct of self-efficacy within its respective communication domain. KR-20 indicated low internal consistency for the SRH knowledge scale (KR-20 = 0.426, 11 items), likely due to limited response variability.

The SRH self-efficacy scales for partner and provider communication demonstrated excellent internal consistency (reliability) and construct validity among adults with SB. In contrast, limited variability in knowledge responses suggests that the current knowledge scale may require refinement to better capture differences in SRH knowledge across individuals.

The aim of this study was to investigate the effects of manual diaphragmatic relaxation combined with diaphragmatic breathing on respiratory muscle strength, pulmonary function, chest expansion, and sitting ability in children with diplegic cerebral palsy (CP).

This randomized controlled study was conducted with 15 children with diplegic CP aged 5–15 years. Participants were randomly divided into two groups (control and intervention); both groups received conventional physiotherapy two days a week (45 minutes) for eight weeks. The intervention group additionally received manual diaphragm relaxation and diaphragmatic breathing exercises. The primary outcome was respiratory muscle strength (maximum inspiratory pressure and maximum respiratory pressure. Secondary outcomes were pulmonary function test (PFT), chest expansion and sitting dimension of the Gross Motor Functional Measurement (GMFM-B). (NCT05559346)

After eight weeks of intervention, the intervention group showed improvement in respiratory muscle strength, chest mobility, and GMFM-B score (p < 0.05). Respiratory muscle strength was significantly higher in the intervention group than in the control group (p < 0.05), but PFT parameters and GMFM-B scores were not significantly different between the two groups (p > 0.05)

Adding manual diaphragmatic relaxation and diaphragmatic breathing exercises to the physiotherapy program in children with CP may contribute to the rehabilitation program.

This study aimed to explore the feasibility and user experience of Grasp, a novel digital tool designed to register coping experiences during paediatric rehabilitation, and to examine perceived impact on reflection and sense of mastery.

Children and adolescents aged 8–16 years, their parents, and healthcare professionals in paediatric rehabilitation participated. Those participating were instructed to squeeze Grasp when experiencing mastery or coping during activities. Data were visualised and discussed during the end-of-stay summary meeting. A multi-method design was applied, integrating data logs, questionnaires, and semi-structured interviews to capture measurable indicators and in-depth perspectives.

Twenty-three children and adolescents with parents and healthcare professionals were included. Recruitment rate was 100% and retention 96%. All participants used the device and software (median registrations 19, range 4–80). The majority found Grasp easy to use (71%), enjoyable (61%), and motivating (89%). Healthcare professionals reported that data provided valuable insights into children's coping experiences. Interviews identified two main themes: (a) coping registration with Grasp was feasible, and (b) Grasp seemed to facilitate self-efficacy and reflection.

Registering coping experiences through Grasp was feasible and well-received in paediatric rehabilitation. For some, it appeared to strengthen reflection and sense of mastery, potentially enhancing self-efficacy.

This study aimed to assess the acute effects of hippotherapy performed on different seating surfaces on sitting balance and walking speed in children with special needs.

Children aged 3–18 years with special needs were included. Participants were assigned to three groups: Group 1 (Saddle), Group 2 (No saddle, direct horse contact), and Group 3 (Saddle with additional texture material). Each group received a 30-min hippotherapy session in a riding arena. Sitting balance was measured with the BeCure balance system, and walking speed was assessed using the 10-meter walk test before and immediately after the session.

No significant improvement was found in sitting balance in any group after the intervention. However, Group 3 showed increased walking speed compared to Groups 1 and 2. Intergroup comparisons showed no statistically significant differences in sitting balance or walking speed.

Different texture materials used on saddles may provide more noticeable acute effects in hippotherapy. Future research should involve larger sample sizes and explore subacute and long-term outcomes.

Despite knowing that adolescents with disabilities face substantial barriers transitioning from pediatric to adult health care, little is known about how pediatricians experience transition-related tasks for their patients with disabilities.

The 2023 American Academy of Pediatrics (AAP) Periodic Survey utilized a cross-sectional random sample of post-trainee, non-retired, US-based AAP members to derive a nationally representative sample. Several questions related to transition services were compared. Data were weighted for non-response bias. Only AAP staff conducting the statistics had access to the non-anonymized data.

Over half of the pediatricians reported discussing consent for care (56.3%), assisting with referrals to adult care (56.5%) and providing anticipatory guidance about sexual health and development (52.7%) to most or all adolescents with disabilities. In addition, 22.7% reported providing all four transition services to most or all of their adolescent patients with disabilities. A majority identified barriers that impeded successful transition of their patients with disabilities.

While many pediatricians engaged in a variety of transition-related activities for their adolescent patients with disabilities, they also identified numerous barriers. These findings underscore the importance of addressing both the practice and system level barriers that limit pediatricians’ abilities to provide transition services for their patients with disabilities.