An emerging body of international research suggests family caregivers may be a high-risk group for suicide, but the evidence has not been synthesised. Forty-eight peer-reviewed journal articles were ...included in this review, spanning low-, middle-, and high-income countries and a variety of illnesses and disabilities. The proportion of caregivers experiencing suicidal ideation ranged from 2.7% to 71%, with evidence of suicide attempts, deaths by suicide, and deaths by homicide-suicide also reported. Risk and protective factors varied across studies and there was little consideration of differences by caregiving relationship, type of illness/disability, or country. There is sufficient evidence to warrant concern for caregivers around the world and prompt action in policy and practice, but more rigorous research is required to draw clear, nuanced conclusions about risk and inform evidence-based prevention and intervention.
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.
The objective was to summarise the available evidence on and current practice for improving continence in children and young people with neurodisability.
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.
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.
Quantitative studies in the review were not methodologically robust. The survey had a risk of response bias.
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.
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.
This study is registered as PROSPERO CRD42018100572.
This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in
; Vol. 25, No. 73. See the NIHR Journals Library website for further project information.
ObjectiveDescribe 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.DesignFour 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.Results1028 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.ConclusionsPerceptions 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.
There is a growing body of evidence on suicide risk in family carers, but minimal research on parents caring for children with disabilities and long-term illnesses. The aim of this study was to ...conduct the first dedicated research on suicide risk in parent carers and identify: (1) the number of parent carers experiencing suicidal thoughts and behaviors, and (2) the risk and protective factors for suicidality in this population.OBJECTIVEThere is a growing body of evidence on suicide risk in family carers, but minimal research on parents caring for children with disabilities and long-term illnesses. The aim of this study was to conduct the first dedicated research on suicide risk in parent carers and identify: (1) the number of parent carers experiencing suicidal thoughts and behaviors, and (2) the risk and protective factors for suicidality in this population.A cross-sectional survey of parent carers in England (n = 750), co-produced with parent carers. Suicidal thoughts and behaviors were measured with questions from the Adult Psychiatric Morbidity Survey. Frequencies summarized the proportion of carers experiencing suicidal thoughts and behaviors. Logistic regressions identified risk and protective factors.METHODA cross-sectional survey of parent carers in England (n = 750), co-produced with parent carers. Suicidal thoughts and behaviors were measured with questions from the Adult Psychiatric Morbidity Survey. Frequencies summarized the proportion of carers experiencing suicidal thoughts and behaviors. Logistic regressions identified risk and protective factors.42% of parents had experienced suicidal thoughts and behaviors while caring for a disabled or chronically ill child. Only half had sought help for these experiences. Depression, entrapment, dysfunctional coping, and having a mental health diagnosis prior to caring, were significant risk factors.RESULTS42% of parents had experienced suicidal thoughts and behaviors while caring for a disabled or chronically ill child. Only half had sought help for these experiences. Depression, entrapment, dysfunctional coping, and having a mental health diagnosis prior to caring, were significant risk factors.Parent carers contemplate suicide at levels that exceed those of other family carers and the general public. There is an urgent need, in policy and practice, to recognize parent carers as a priority group for prevention and intervention.CONCLUSIONParent carers contemplate suicide at levels that exceed those of other family carers and the general public. There is an urgent need, in policy and practice, to recognize parent carers as a priority group for prevention and intervention.
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