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.

Constipation in older people: A consensus statement.

BACKGROUND AND AIMS: Chronic constipation is a serious medical condition that affects 30%-40% of people over 60 years old. Although not normally life threatening, constipation reduces quality of life by the same extent as diabetes and osteoarthritis. There are currently no Europe-wide guidelines for treating constipation in older people, although there is some country-level guidance for the general population. We have evaluated the existing guidance and best clinical practice to improve the care of older people with constipation. METHOD: European healthcare professionals working in gastroenterology, geriatrics, nursing and pharmacology discussed the treatment of constipation in older people and reviewed existing guidance on the treatment of constipation in the general population. This manuscript represents the consensus of all authors. DISCUSSION: Most general guidance for constipation treatment recommends increased dietary fibre, fluid intake and exercise; however, this is not always possible in older patients. Although a common first-line treatment, bulk-forming laxatives are unsuitable for older people because of an associated need to increase fluid intake, osmotic laxatives are likely to be the most suitable laxative type for older patients. Treatment is often hampered by reluctance to talk about bowel problems so healthcare providers should proactively identify older constipated patients who are self-medicating or not receiving treatment. CONCLUSIONS: With certain modifications, general treatment guidelines can be applied to older people with constipation, although specific guidelines are still required for this age group. Awareness of constipation, its complications and treatment options need to be increased among healthcare providers, patients and carers.

Helping schools to manage continence problems.

The charity organisations Education and Resources for Improving Childhood Continence and PromoCon regularly receive feedback from health professionals, children and families suggesting that schools struggle to cope with childhood continence problems. This article outlines the responsibilities of schools to understand continence problems, implement effective policies and procedures to meet children's needs, and recognise those children's rights to be supported in achieving continence and independence. It also describes the development of a toolkit called The Right to Go.

Daytime wetting in children and acquisition of bladder control.

Daytime wetting is a common problem in early childhood. This article explains how the infant's bladder develops and how children are able to develop bladder control. The need for more structured toilet training at an earlier age than is standard today is proposed to prevent children having difficulty attaining and maintaining bladder control, which may be associated with delays in becoming continent and the development of daytime wetting. The article discusses common daytime wetting problems and describes how they can be assessed using a structured, standardised approach to history taking. Management using bladder retraining in the form of modified urotherapy is outlined, which aims to retrain the bladder without the need for surgery or pharmaceutical treatment.

How to manage chronic constipation in adults.

Constipation is one of the most common gastrointestinal disorders encountered in clinical practice. Its prevalence increases with age and it is more common in the female population. Although often trivialised as a common and minor problem, chronic constipation is associated with considerable impairment of quality of life and is a significant burden on healthcare budgets. This article gives an overview of the management of constipation in adults, including assessment and treatment.

Assessment, prevention and treatment of constipation in children.

The management of constipation can often be a challenge in children who may be fearful of opening their bowels and who may be reluctant to sit on the toilet. This article focuses on guidance produced by the National Institute for Health and Clinical Excellence on constipation in children and young people. The guidance discusses successful treatment of constipation, including ensuring effective initial emptying of the bowel and appropriate laxative therapy.

Working with families to boost children's continence.

This article discusses a new care model for managing idiopathic paediatric continence problems. A key aspect of the innovation is empowering the child and family to self-manage the problem. This resulted in improved treatment outcomes and reduced both "did not attend" rates and waiting lists. It was also cost effective.

One step at a time: how to toilet train children with learning disabilities.

Toilet training children with learning disabilities can present challenges and requires careful assessmentand management. This article examines strategies for toilet training using a five step approach bladder and bowel control.

Assessing and treating faecal incontinence in children.

Faecal incontinence can have a profound effect on the lives of children and their families. Children who have faecal incontinence have a greater risk of being bullied at school, and parents are often frustrated and concerned by the associated social stigma. The social and psychological effects of faecal incontinence on the child can last for a long time. This article provides an overview of the causes of faecal incontinence, discusses assessment of bowel dysfunction and outlines current treatments. The article also highlights the importance of the nurse's role, as part of the multidisciplinary team, in assessing, treating and supporting children and their families to ensure that any interventions have the best chance of succeeding and to minimise the risk of relapse.

The impact paediatric bowel care pathway.

Care pathways to manage continence problems in adults are well established (Bayliss et al, 2003). However, little work had been carried out to develop care pathways in paediatrics. There are increasing numbers of nurse-led clinics for children with continence problems, and nurses need structured systems to guide practice. June Rogers explains how the IMPACT paediatric bowel care pathway was developed.

An integrated paediatric continence service.

June Rogers, winner of the 2007 NT Continence Award, describes the process of developing an integrated continence service.

Urine collection in infants and children.

June Rogers and Caroline Saunders review current evidence and best practice regarding obtaining a urine specimen from children.

Offset analgesia: a temporal contrast mechanism for nociceptive information.

Temporal filtering of afferent information is an intrinsic component of the processing of numerous types of sensory information. To date, no temporal filtering mechanism has been identified for nociceptive information. The phenomenon of offset analgesia, the disproportionately large decrease in perceived pain following slight decreases in noxious thermal intensity, however, suggests the existence of such a mechanism. To test the hypothesis that a temporal filtering mechanism is engaged during noxious stimulus offset, subjects rated heat pain intensity while stimulus fall rates were varied from -0.5 to -5.0 degrees C/s. In the absence of a temporal filtering mechanism, pain intensity would be expected to decrease in direct proportion to the stimulus fall rate. However, psychophysical fall rates were considerably faster than stimulus fall rates, such that subjects reported no pain while stimulus temperatures were clearly within the noxious range (47.2 degrees C). In addition, paired noxious stimuli were presented simultaneously to determine if offset analgesia evoked by one stimulus could inhibit pain arising from a separate population of primary afferent neurons. Pain ratings were significantly lower than those reported from two constant 49 degrees C stimuli when offset analgesia was induced proximal to, but not distal to, a second noxious stimulus. These asymmetric spatial interactions are not readily explained by peripheral mechanisms. Taken together, these findings indicate that offset analgesia is mediated in part by central mechanisms and reflect a temporal filtering of the sensory information that enhances the contrast of dynamic decreases in noxious stimulus intensity.