Improving functional skills and physical fitness in children with Rett syndrome
Treatment Outcome; Child; Humans; Female; Motor Skills; Statistics as Topic; Feasibility Studies; Social Behavior; Physical Fitness; Activities of Daily Living/psychology; Education of Intellectually Disabled; Exercise/psychology; Rett Syndrome/psychology/rehabilitation; tone and motor problems; Rett syndrome; psychological intervention; daily conductive educational program
BACKGROUND: To investigate the feasibility of a physical exercise programme with treadmill for persons with Rett syndrome (RS) in order to promote fitness and health. METHODS: A daily training programme on a treadmill was designed for four females with RS over a period of 2 months with tests performed in three intervals, at time 1, 2 and 3, 2 months apart with intervention taking place between tests 2 and 3. Participants were four girls with RS aged 8.5-11 years (mean: 10 years) attending the educational facility Beit Issie Shapiro, Raanana, Israel, all with independent mobility and with typical characteristics of RS stage III. The training took place at the educational facility, on a 1400 model treadmill (Trimline, capable of very low speeds < 0.5 k/h), with very long side rails. Special low side rails were adapted to the treadmill in order to fit the height of the children and velcro straps were added to assist in safely placing the hands. Pulse was monitored constantly during exercise by an A3 polar pulse belt. Pulse measurements at rest during training were considered as evaluators of aerobic physical condition. Functional measurement was based on a scale specially established for the present study. The scale was a 31-item motor-functioning tool that measures the ability of participants to knee walk and knee stand, to get up to a standing position, duration of walking different paths, and to go up and down stairs and slopes. RESULTS: The study showed that physical fitness of the children at the end of the training programme had improved considerably (P < 0.05). Tests showed that general functional abilities had improved considerably (P < 0.0001). Although all items of the functional ability measure showed impressive positive change, some of the 31 items on it showed statistically significant improvement (knee walking, going up and down stairs and speed of walking for 25 m. Pearson correlation showed high linkage (r = -0.76) between functional improvement and change in physical fitness. CONCLUSIONS: Physical fitness programme executed on a daily basis is capable of improving functional ability of children with RS. Nonprofessional personnel can execute such a programme under supervision of a qualified physical therapist.
Lotan M; Isakov E; Merrick J
Journal of Intellectual Disability Research
2004
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/j.1365-2788.2003.00589.x" target="_blank" rel="noreferrer noopener">10.1111/j.1365-2788.2003.00589.x</a>
Comparison of mothers and grandmothers physical and mental health and functioning within 6 months after child NICU/PICU death
Attitude to Death; Bereavement; Blacks; Checklists; Chi Square Test; Cross Sectional Studies; Depression; Employment Status; Grandparents Psychosocial Factors; Grief; Health Status; Hispanics; Human; Intensive Care Units; Interviews; Mental Health; Mothers Psychosocial Factors; Neonatal; Paired T-Tests; Pediatric; Physical Fitness; Post-Traumatic; Psychological Tests; Psychosocial; Stress Disorders; Support
Losing a child is devastating for parents and grandparents. Family and friends generally focus on comforting and supporting the bereaved parents, unintentionally ignoring the bereaved grandparents. Grandmothers and grandfathers often struggle with wanting to help their adult children (deceased child’s parents) without usurping the parents’ responsibilities and decisions regarding the deceased child. Research on mothers’ and grandmothers’ health at about the same time after the same child’s death in the neonatal or pediatric intensive care unit is lacking. The aim of this study was to compare mothers and grandmothers on physical health, mental health, and functioning in the first 1–6 months after the same child’s death in a neonatal or pediatric intensive care unit.
Youngblut JM; Brooten D
Italian Journal of Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1186/s13052-018-0531-8" target="_blank" rel="noreferrer noopener">10.1186/s13052-018-0531-8</a>
Physical functioning in female caregivers of children with physical disabilities compared with female caregivers of children with a chronic medical condition
Child; Cross-Sectional Studies; Female; Humans; Adult; Aged; Middle Aged; Disabled Persons; Regression Analysis; Caregivers/psychology; Chronic disease; Back Pain/etiology; Depression/etiology; Mothers/psychology; Physical Fitness
OBJECTIVES: To evaluate if physical functioning is different in female caregivers of children with physical disabilities compared with female caregivers of children with nondisabling medical illnesses, and to investigate the factors associated with functioning level. DESIGN: Cross-sectional survey. SETTING: University-based clinics. PATIENTS: Ninety consecutive female caregivers of children presenting to a pediatric physical medicine and rehabilitation (PM&R) clinic, and 23 presenting to a pediatric endocrine clinic. INTERVENTION: Fifteen-minute self-administered survey. MAIN OUTCOME MEASURES: The dependent variable measured was physical functioning (physical functioning subscale of the Short Form-36). Independent variables measured were the average back pain severity over the last week (100-mm visual analog scale), mood (using the Center for Epidemiologic Studies-Depression Scale), work status, amount of lifting at work, caregiver demographics, child demographics, and the physical functioning ability of the child (measured using the WeeFIM scale). RESULTS: The mean (SD) physical functioning score of caregivers of children in the pediatric PM&R clinic was 80.6 (21.9), which was less than the score of 90.2 (17.6) for caregivers in the pediatric endocrine clinic (mean difference, 9.6; 95% confidence interval, -0.9 to -18.4). The physical functioning score of 77.7 (22.9) in caregivers of PM&R clinic children with a WeeFIM scale score of 1 to 4 was significantly worse than the 90.5 (14.8) in female caregivers of children with a WeeFIM score of 5 to 7 (mean difference, 12.8; 95% confidence interval, -2.0 to -23.6). This decrease is associated with the average pain severity, mood, and total length of time of back pain in the previous 12 months. Regression analysis shows that pain severity and caregiver mood are significantly related to the physical functioning status of the caregiver. CONCLUSIONS: Physical functioning is decreased in female caregivers of children with a physical disability. This decrease is associated with caregiver pain severity and mood.
2002
Tong HC; Kandala G; Haig AJ; Nelson VS; Yamakawa KS; Shin KY
Archives Of Pediatrics & Adolescent Medicine
2002
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1001/archpedi.156.11.1138" target="_blank" rel="noreferrer">10.1001/archpedi.156.11.1138</a>