Journal of Pediatric Rehabilitation Medicine - Volume Pre-press, issue Pre-press
Purchase individual online access for 1 year to this journal.
Price: EUR 105.00
Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach is an international journal designed to parallel the multi-disciplinary team approach of caring for a child with an acute or chronic disease. The issues will primarily be themed and broad in scope including, but not be limited to cerebral palsy, traumatic brain injury, spinal cord injury, spina-bifida, amputation, muscular dystrophies of all types, stroke, cancer, mental retardation, developmental delays, and others.
The aim is to include a wide range of experts who care for children with the above diagnosis. Authorship by two different disciplines is requested though not required to encourage an interdisciplinary and collaborative approach. The goal is for the reader to obtain not just the medical perspective, but also nursing, occupational, physical and speech therapy, psychology, home care, etc., in providing the most comprehensive care for children. Manuscripts will be blinded and peer reviewed with appropriate feedback. Statistical analysis will be reviewed by the biostatistician. Readers are encouraged to submit and or suggest case reviews, commentaries, editorials, original research, conference schedules, or reviews.
Abstract: PURPOSE: This pilot study sought to describe the perspectives and experiences of survivors of pediatric traumatic brain injury (pTBI), their caregivers, and the medical professionals who serve them. METHODS: Thirteen people participated in semi-structured interviews: five survivors of pTBI, their primary caregivers, and three medical professionals who work with persons who have sustained pTBI. The study involved a prospective, qualitative, participatory action research model with convenience sampling. All interviews were transcribed and thematic analysis identified central concepts within and between groups. Additionally, the Consolidated Criteria for Reporting Qualitative Research (COREG) were applied. RESULTS:…This study found that survivors of pTBI and their caregivers commonly noted later developing issues, social challenges, and difficulty in post-rehabilitation transitions. In addition, both caregivers and medical professionals reported the need for improved follow-up with survivors, evidence-based research, and medical and therapy providers with specific training on pTBI. CONCLUSIONS: The perspectives provided by key stakeholders in this pilot study identify common themes that should be central to driving innovation in rehabilitation research and clinical care.
Abstract: PURPOSE: Significant gaps in service delivery for children with acquired brain injury exist between healthcare and educational systems, such as the lack of coordinated efforts to transfer rehabilitation strategies to school settings. This paper attempts to address these issues and offer recommendations to bridge these gaps in care. METHODS: The American Congress of Rehabilitation Medicine (ACRM), Brain Injury-Interdisciplinary Special Interest Group (BI-ISIG), Pediatric-Adolescent Task Force constructed and disseminated a survey to medical rehabilitation (N = 44) and education professionals (N = 40). Responses were analyzed quantitatively…and qualitatively, achieving > 85% inter-coder reliability. RESULTS: Results highlighted differences between groups in methods for seeking new information, opinions on advocacy needs, and differing priorities given to various resources. CONCLUSIONS: These discrepancies have important implications for improved collaboration needed for assuring an appropriate continuum of service for this population. Recommendations include: 1) providing education and training regarding brain injury in the most cost-effective ways utilizing technology that crosses the barriers identified and reaches people in multiple settings; 2) direct and active communication between medical and educational professionals; and 3) developing an interdisciplinary Community of Practice to help bridge medical rehabilitation and school systems.
Abstract: PURPOSE: To conduct a systematic review of studies on non-surgical and surgical interventions for elbow flexion contractures secondary to brachial plexus birth injury (BPBI). METHODS: MEDLINE, EMBASE, PsycINFO, and CINAHL databases were searched for randomized controlled trials, observational studies, and case series studies on treatment of elbow flexion contractures secondary to BPBI. Study quality was evaluated using the Effective Public Health Practice Project tool. RESULTS: Of the 950 records found, 132 full text articles were reviewed, and 3 cohort studies and 8 case series were included. The overall methodological quality of included studies…was weak. The weak quality evidence demonstrated that significant gains in elbow extension passive range of motion (ROM) can be achieved with serial casting (range: 15 to 34.5 degrees) or elbow release surgery (range: 28.4 to 30.0 degrees). At best, a reduction to an elbow contracture between - 15.0 and - 18.8 degrees (casting) and - 8.0 and - 43.6 (elbow release surgery) can be achieved. Insufficient outcomes on elbow flexion ROM and strength were found in both non-surgical and surgical studies. CONCLUSION: The quality of evidence on the effectiveness of interventions for an elbow flexion contracture secondary to BPBI is weak. In the context of insufficient evidence on the risks of pursuing such interventions, it is prudent to attempt non-surgical interventions prior to surgery. Level of Evidence: III – systematic review of level IV studies
Abstract: PURPOSE: To evaluate effectiveness of individualized, goal directed rehabilitation protocol in improving functional outcomes in children with developmental delay disorders in a region with limited rehabilitation accessibility and to explore if goal setting influences changes observed in functional levels. METHODS: Children (6 months to 17 years) with developmental delay, who visited as out-patients to the Department of Physical Medicine and Rehabilitation and whose care givers were willing to participate in the study, were enrolled for a period of one year. Individualized rehabilitation protocol targeting the child’s specific problems with a simultaneous home programme was performed. A…single group pre-post study design was used to assess the protocol’s effectiveness. OUTCOME MEASURES: Goal attainment scale (GAS), Gross Motor Function Classification System (GMFCS) Level, Gross Motor Functional Measure (GMFM) and Manual Ability Classification System (MACS) were administered pre and post-intervention monthly for 3 months. Statistical analysis was done using SPSS statistics version-22. RESULTS: Total of 32 children participated in the study. Significant differences between pre and post scores of GAS score (Wilcoxon’s signed rank test [W value] = 4.937, p -value < 0.005), GMFCS (W value: - 3.435, p -value < 0.005), GMFM (W value: 4.937, p -value < 0.005) and MAC score (W value: - 4.714, p -value < 0.005) were noted at 3 months. No correlation was observed between the GAS pre-post score and GMFM, GMFCS and MAC pre-post scores. CONCLUSION: An effective rehabilitation programme in children with developmental delay should be individualized and should be goal directed to achieve maximum functional improvement. Improvement in the goals set were independent of the improvement in functional outcome levels. Care-givers play a pivotal role in both individualization and goal setting for rehabilitation, especially in a region with limited rehabilitation accessibility.
Abstract: PURPOSE: The PEDI-CAT measures daily functioning of children and youth, aged 1 to 21 years, with a variety of physical, cognitive and/or behavioral disabilities. In order to use an instrument in another culture or language, translation and cross-cultural validation are important, particularly for end-users. This study describes the process of translation and cross-cultural adaptation of the Dutch version of the PEDI-CAT. METHODS: End-users were involved in all steps. First, the PEDI-CAT items were reviewed to determine whether the items were relevant and acceptable in the Dutch culture. Then, the PEDI-CAT was translated into Dutch using specific…guidelines. Finally, the wording of the Dutch items and response options were reviewed and tested with 22 parents of children and adolescents with and without disabilities. RESULTS: All 267 items and response options of the original PEDI-CAT were assessed as relevant and translated into Dutch. A selection of 175 items was tested with Think Aloud interviews which revealed that the translation of 46 items could be improved. CONCLUSION: The role of end-users in the process of translation and cross-cultural adaptation was crucial. This collaborative process resulted in a Dutch version of the PEDI-CAT that has been optimally adapted to the Dutch language and culture.
Abstract: We report the case of a six-year-old girl with Moyamoya disease who presented with bilateral internal carotid artery malignant infarct following encephaloduroarteriosynangiosis (EDAS). During her neurorehabilitation, she developed gradually worsening dystonic spasms with opisthotonic posturing, tachycardia, tachypnea and desaturation. This rare life threatening movement disorder was diagnosed as status dystonicus based on the history and clinical presentation. Status Dystonicus occurs commonly in children and the etiology is often diverse. It occurs in patients with preexisting dystonia or following an acute central nervous system insult of varied etiology. Status dystonicus is usually precipitated by one or more triggering factors. Rarity and…lack of objective criteria for diagnosis often delays the management thereby increasing the risk of mortality and morbidity. Here, we discuss the challenges faced in the diagnosis and management of a child with denovo status dystonicus.
Keywords: Dystonia, status dystonicus, dystonic storm
Abstract: PURPOSE: To identify key determinants of the quality of life of caregivers of infants and toddlers (< 3 years) who are deaf/hard-of-hearing (DHH). METHODS: We conducted focus groups with providers for children who are DHH as well as interviews with hearing parents of infants and toddlers who are DHH. A multi-step qualitative analysis on interview data using grounded theory was performed, and an iterative analysis to investigate codes to characterize specific topics in caring for deaf infants and toddlers was conducted. RESULTS: Four focus groups (n =…33) and six semi-structured interviews (n = 7) were conducted. The major theoretical code found was the “Search for Equilibrium” in parenting which arose from the three main categories of the caregiver role/experience: (1) being a parent – modifying parenting style as a result of their child’s hearing loss, (2) being a mediator – modulating and filtering interactions between their child and their child’s environment, and (3) being a navigator – managing the logistics of the medical and educational system. CONCLUSIONS: For hearing parents, the diagnosis of hearing loss requires changes in multiple domains of parenting. Support in each of these areas is critical for parents to restore a sense of equilibrium that is central to their quality of life. This framework provides a way to categorize parent experiences and may act as a template for focused interventions in the three identified domains.