Interventions to improve continence for children and young people with neurodisability: a national survey of practitioner and family perspectives and experiences.

OBJECTIVE: Describe families' experiences of interventions to improve continence in children and young people with neurodisability, and health professionals' and school and social care staff's perspectives regarding factors affecting intervention use. DESIGN: Four online surveys were developed and advertised to parent carers, young people with neurodisability, health professionals and school and social care staff, via societies, charities, professional contacts, schools, local authorities, and national parent carer and family forums, who shared invitations with their networks. Survey questions explored: difficulties helping children and young people use interventions; acceptability of interventions and waiting times; ease of use and availability of interventions, and facilitators and barriers to improving continence. RESULTS: 1028 parent carers, 26 young people, 352 health professionals and 202 school and social care staff registered to participate. Completed surveys were received from 579 (56.3%) parent carers, 20 (77%) young people, 193 (54.8%) health professionals, and 119 (58.9%) school and social care staff. Common parent carer-reported difficulties in using interventions to help their children and young people to learn to use the toilet included their child's lack of understanding about what was required (reported by 337 of 556 (60.6%) parent carers who completed question) and their child's lack of willingness (343 of 556, 61.7%). Almost all (142 of 156, 91%) health professionals reported lack of funding and resources as barriers to provision of continence services. Many young people (14 of 19, 74%) were unhappy using toilet facilities while out and about. CONCLUSIONS: Perceptions that children lack understanding and willingness, and inadequate facilities impact the implementation of toileting interventions for children and young people with neurodisability. Greater understanding is needed for children to learn developmentally appropriate toileting skills. Further research is recommended around availability and acceptability of interventions to ensure quality of life is unaffected.

Improving continence in children and young people with neurodisability: a systematic review and survey.

BACKGROUND: Children and young people with neurodisability often need help to achieve socially acceptable bladder and bowel control. Approaches vary depending on whether or not the impairment results from spinal cord pathology that impairs motor control and sensation of the bladder and bowel. Currently, there is uncertainty about which interventions are effective. OBJECTIVE: The objective was to summarise the available evidence on and current practice for improving continence in children and young people with neurodisability. DESIGN: A systematic review of the effectiveness, cost-effectiveness and factors that modify intervention implementation, alongside a cross-sectional, online survey of current practice with health professionals, parent carers, school and care staff and young people with neurodisability. RESULTS: Twelve databases were searched in the review, resulting in 5756 references; 71 studies (72 papers) were included in the analyses. Most of the evidence was for children with spinal cord pathology, which involved evaluations of pharmacological approaches and surgical techniques, whereas the evidence pertaining to those with non-spinal-cord-related pathology tended to be for behavioural interventions. The methodological quality of studies was rated as being moderate to poor. There were three robust qualitative studies about the experience of continence among children with spinal cord pathology. We found substantial heterogeneity across the interventions that we evaluated in terms of quality, study design and outcomes measured. No economic studies were found. The results were synthesised narratively and reported in text and tables. We did not find any eligible studies evaluating interventions using toilet and clothing adaptations in the review, although the survey highlighted that these types of interventions are frequently used and considered. In total, 949 people responded to the survey: 202 health professionals, 605 parent carers, 122 school and social care staff, and 20 young people. The survey results illustrated the different roles that professionals have in improving continence, highlighting the importance of a multidisciplinary approach to supporting children and young people and their families. Clinicians employ a range of assessments and interventions to improve continence or independent toileting, depending on the needs of the child. LIMITATIONS: Quantitative studies in the review were not methodologically robust. The survey had a risk of response bias. CONCLUSIONS: Our research found a dearth of good-quality evidence for many of the interventions currently in use, and no evidence of experiences of implementing interventions for children with non-spinal-cord-related pathology. There was also no evidence of cost-effectiveness of any of the interventions. FUTURE WORK: There is a need to involve young people and families in the design of high-quality evaluative research for interventions that aim to improve continence. This is especially the case for children with autism and learning disability, who have been neglected in previous evaluative and qualitative research. We recommend better training for health, education and care professionals about toileting, informed by evidence and the lived experiences of children and their families. We recommend a joined-up multidisciplinary and holistic approach to improving continence to maximise independence, dignity and comfort. It is vital that children and young people with neurodisability have early access to regular, integrated assessment of their bladder and bowel health, and are fully supported with appropriate personalised treatment. STUDY REGISTRATION: This study is registered as PROSPERO CRD42018100572. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 25, No. 73. See the NIHR Journals Library website for further project information.

Learning to go to the toilet is an important skill. Becoming continent involves knowing when you need to go, holding on until you find the right place, going to the toilet, cleaning and getting dressed again. Many children and young people with special educational needs or disability can learn to become clean and dry, sometimes with help or equipment. Advice is not consistent about the best ways to assess and treat continence problems for children and young people with neurodisability. This research aimed to find out how families and professionals measure and improve continence, and if there was evidence about which treatments are useful. We brought together the results of studies that have tested ways of assessing and improving toilet training for children and young people with special educational needs or disability. We carried out four online surveys with health professionals, education and care staff, parent carers, and disabled young people. We brought together and explained the findings from the surveys and the studies with help from parent carers and professionals. Approaches to improving continence vary depending on whether or not the child or young person's nerves and muscles that control their bladder and bowel work properly. Children and young people with conditions affecting the nerves and muscles of their bladder and bowel are often helped by medical or surgical treatments. Children and young people with conditions such as learning disability or autism may benefit from behavioural therapies to help them learn to use the toilet. There is poor evidence for how well treatments work and whether or not they are value for money. More and better research is needed to make sure that children and young people are able to be clean and dry without pads, maximising their independence, dignity and comfort. This also requires an adequate number of fully accessible toilets in the community.

The Medical Resuscitation Committee: Interprofessional Program Development to Optimize Care for Critically Ill Medical Patients in an Academic Pediatric Emergency Department.

ABSTRACT: Provision of optimal care to critically ill patients in a pediatric emergency department is challenging. Specific challenges include the following: (a) patient presentations are highly variable, representing the full breadth of human disease and injury, and are often unannounced; (b) care team members have highly variable experience and skills and often few meaningful opportunities to practice care delivery as a team; (c) valid data collection, for quality assurance/improvement and clinical research, is limited when relying on traditional approaches such as medical record review or self-report; (d) specific patient presentations are relatively uncommon for individual providers, providing few opportunities to establish and refine the requisite knowledge and skill; and (e) unscientific or random variation in care delivery. In the current report, we describe our efforts for the last decade to address these challenges and optimize care delivery to critically ill patients in a pediatric emergency department. We specifically describe the grassroots development of an interprofessional medical resuscitation program. Key components of the program are as follows: (a) a database of all medical patients undergoing evaluation in the resuscitation suite, (b) peer review and education through video-based case review, (c) a program of emergency department in situ simulation, and (d) the development of cognitive aids for high-acuity, low-frequency medical emergencies.

Physiological variation in amethyst sunbirds (Chalcomitra amethystina) over an altitudinal gradient: a seasonal comparison.

Southern Africa is characterised by an unpredictable environment with daily and seasonal temperature fluctuations, thus posing challenging thermal conditions and increased energetic stress for endothermic vertebrates. Amethyst Sunbirds (Chalcomitra amethystina) are relatively large African sunbirds (15 g). They are considered non-migratory and thus have to cope with the temperature changes and physiological stresses a new season brings. This study compared altitudinal subpopulations and the seasonal shifts in metabolic parameters between and within the subpopulations in metabolic parameters. Amethyst Sunbirds were caught in summer and winter at three different altitudinal subpopulations; Underberg (1555 m asl), Howick (1075 m asl) and Oribi Gorge (541 m asl). Upon capture, metabolic rates of the sunbirds were measured indirectly by quantifying oxygen consumption ((.)VO2) using flow through respirometry, at 5 and 25 degrees C. Birds then underwent a 6-week acclimation period at 25 degrees C on a 12 L: 12D cycle. (.)VO2 was measured post-acclimation at 8 different temperatures (15, 5, 10, 20, 30, 28, 25 and 33 degrees C), which were ordered randomly in the experimental protocol to avoid acclimation bias. Experiments were repeated for a winter and summer season. In general, Amethyst Sunbird subpopulations from Underberg and Howick showed higher post-acclimation resting metabolic rates per temperature in winter than in summer trials. Underberg and Howick subpopulations respectively showed a significant difference between summer and winter (.)VO2 at 5 and 10 degrees C. Thermal neutral zones of all of the subpopulations of sunbirds shifted between winter and summer. Post-acclimation basal metabolic rate of sunbirds decreased significantly by 38.8% from winter to summer for the Underberg subpopulation, increased by 44.8% for the Howick subpopulation and did not change significantly for the Oribi Gorge subpopulation (5.8% decrease).

Physiological variation in amethyst sunbirds (Chalcomitra amethystina) over an altitudinal gradient in winter.

Flexibility of metabolic rates within a species allows for the colonization of different habitats along an altitudinal and thus temperature gradient. The distribution range of amethyst sunbirds (Chalcomitra amethystina) within southern Africa includes an altitudinal gradient from the Drakensberg to the coast of KwaZulu-Natal. We expected that over this altitudinal gradient amethyst sunbirds would exhibit variation in winter metabolic rates, particularly basal metabolic rates (BMR) and resting metabolic rate (RMR) pre- and post-acclimation. Sunbirds from three locations, Underberg (1553 m above sea level; asl), Howick (1075 m asl) and Oribi Gorge (541 m asl) were used for this study. Upon capture, metabolic rate was measured indirectly by quantifying oxygen consumption (V(O(2))) using flow-through respirometry, at 5 and 25 degrees C. Birds were then acclimated at 25 degrees C for 6 weeks on a 12 h:12 h L:D cycle. V(O(2)) was measured post-acclimation at eight different temperatures (15, 5, 10, 20, 30, 28, 25 and 33 degrees C). We found little variation in winter V(O(2)) between individuals from the same locality, whereas significant variation was observed in V(O(2)) at the same temperatures between individuals from the different localities and thus between altitudes. In particular, winter BMR decreased significantly with decreasing altitude post-acclimation. This study emphasizes the need to understand plasticity/flexibility in metabolic rates and to acknowledge altitudinal differences within a species, to make accurate predictions about the thermal physiology of a species and its responses to changes in ambient temperatures.