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.

Parents' perspectives on a collaborative approach to the application of the Handwriting Without Tears(®) programme with children with Down syndrome.

BACKGROUND: The active involvement of parents and children in goal setting and intervention is integral to contemporary occupational therapy process models. However, parental perspectives on collaborative handwriting intervention are limited. This paper presents parental perspectives on a three-way collaboration involving teachers, parents and an occupational therapist in the application of Handwriting Without Tears(®) (HWT(®) ) with children with Down syndrome. METHODS: Within a larger mixed methods study, 44 parents completed purpose-designed questionnaires and six parents participated in a focus group, post 8 months of programme implementation. Both methods gathered parent's perspectives on the usefulness and limitations of applying HWT(®) . The focus group explored collaboration in depth. Analysis involved triangulation of data from descriptive analysis of numerical data with content analysis of open-ended questions and focus group data. FINDINGS: Enablers of parent-child engagement in HWT(®) were identified as; the parent-child-friendly aspects of HWT(®) , the teacher involvement ensuring continuity which eased demands on parents, the ongoing support/guidance of the occupational therapist and the child's involvement in HWT(®) group intervention. The occupational therapists' involvement was reported as essential to encouraging teacher/parent involvement. Barriers to child-parent engagement included fluctuations in child health, mood, attention span and time limitations including the child's involvement in other therapy programmes. CONCLUSIONS: Parents perceived the HWT(®) and the three-way collaborative approach as enabling active parent-child engagement in handwriting intervention. This approach warrants further investigation. Findings have the potential to inform practice guidelines and pre- and post-graduation education related to collaborative handwriting intervention with children with Down syndrome and their families.

'Posture for Learning': meeting the postural care needs of children with physical disabilities in mainstream primary schools in England--a research into practice exploratory study.

PURPOSE: To explore teachers and teaching assistants' (TAs) views of how to manage the postural care needs of children with physical disabilities (PD) in mainstream primary schools, with the aim of developing strategies to support teachers and assistants in this role. METHOD: Qualitative data were gathered from a purposive sample of four primary schools in one county in the U.K. Individual and focus group interviews with 36 teachers and TAs were carried out and used to generate an explanatory framework around their experiences of managing the postural care needs of children with PD. FINDINGS: Teachers and TAs in schools were found to have limited understanding of postural management. Very few had personal experience of the benefits of postural care--instead, most appeared to think in terms of 'doing' rather than 'knowing' about postural care. When implementing therapy programmes, teaching staff followed therapists' instructions carefully, but did not understand the purpose of their actions. Participants described the emotional impact of caring for a child with PD and expressed anxieties about causing discomfort when using equipment such as specialist seating and standing frames. Equipment was viewed as bulky, uncomfortable and restrictive and not suited to the school environment. When asked which kinds of support would be valuable, participants identified practical solutions such as additional space or resources. Based on these findings, therapists, specialist teachers and parents developed an 'A-Z of postural care'. This information resource aimed to address the gaps in knowledge and understanding highlighted by teachers and TAs in the interviews and to acknowledge their anxieties when teaching and caring for children with PD. Stakeholder involvement in all aspects of the project from setting the research question to the development of the A-Z resource has assisted in the dissemination of the resource and its integration into the mainstream school system within the county.

Occupational therapy students' attitudes towards inclusion education in Australia, United Kingdom, United States and Taiwan.

This international, cross-cultural study investigated the attitudes of occupational therapy students from Australia, United Kingdom, United States and Taiwan towards inclusive education for students with disabilities. The possible impact of professional education on students' attitudes was also explored. A total of 485 students from 11 entry-level occupational therapy education programmes from Australia, the United Kingdom, the United States and Taiwan participated in the study. Among them, 264 were freshmen (first-year students) and 221 were seniors (final-year students). Data collected from a custom-designed questionnaire were analysed both quantitatively and qualitatively. In general, the occupational therapy students reported having positive attitudes towards inclusion. Considerable differences, however, existed among the student groups from the four countries. Professional education appeared to have a significant impact on students' attitudes towards inclusion from first year to senior year. Although students were in favour of inclusion, they also cautioned that their support for inclusive practices depended on various factors such as adequate preparation, support and assistance to students with disabilities. Limitations of the study included the small, convenience sample and different degree structures of the participating programmes. Future research studies need to compare occupational therapy students' attitudes with students from other health care professions. A longitudinal study on the impact of the professional education programme on students' attitudes towards inclusive education is warranted.

Occupational therapy students' attitudes towards individuals with disabilities: a comparison between Australia, Taiwan, the United Kingdom, and the United States.

INTRODUCTION: Students who are enrolled in professional education programs such as occupational therapy may have inherent attitudes towards the future clients they work with. These attitudes may be influenced by the level of their professional education as well as cultural values of their country of origin. PURPOSE: The purpose of the study was to examine occupational therapy students' attitudes towards individuals with disabilities from an international, cross-cultural perspective and to investigate the possible impact of professional education on students' attitudes. METHOD: 485 occupational therapy students from 11 university programs (3 from Australia, 3 from the United Kingdom, 3 from the United States, and 2 from Taiwan) completed the Interactions with Disabled Person's (IDP) scale. RESULTS: Significant differences were found between occupational therapy students from Australia, Taiwan, the United States, and the United Kingdom on the following IDP variables: overall attitude towards individuals with disabilities, 'discomfort', 'sympathy', 'uncertainty', 'coping', 'fear', and 'vulnerability'. Significant differences between first year students as a total group and final year students as a total group were found on their overall attitudes towards individuals with disabilities, 'discomfort', and 'uncertainty'. CONCLUSION/IMPLICATIONS: The attitudes towards individuals with disabilities among first year and final year occupational therapy students varies between countries and the students' year level also impacts on their attitudes towards individuals with a disability.