Use of a Modified Azrin–Foxx Toilet Training Procedure with Individuals with Angelman Syndrome

Incontinence of urine and faeces is commonly observed among children with intellectual disability. Although various procedures to establish toileting skills do exist, studies on their effectiveness with children with Angelman syndrome (AS) are lacking. In the present study, a procedure based on Azrin–Foxx toilet training was used to establish toileting skills in six children with intellectual disability and AS. All children showed improved toilet skills. Maintenance was documented by follow‐up recordings for up to 2.5 years. The results are discussed in terms of the specific relationship between the characteristics of trainees with AS and the present training procedure.     

Assessing toileting skills and habits in an adult day care center.

In a structured assessment of mobility and toileting skills, all the continent clients but only 46.2% of incontinent clients were able to toilet themselves, even with verbal and physical guidance. Unobtrusive observation of toileting habits indicated that incontinent clients used the toilet less often than continent clients and used more staff assistance to do so. On mental status examination, incontinent clients scored significantly lower than continent clients. Incontinence in this population is a multidimensional disorder in which physical disability is a predominant factor.     

The Quality of Life of Family Caregivers of Adults with Intellectual Disabilities in Taiwan

Background Taiwanese family carers of people with intellectual disabilities not only suffer from long‐term stress but also need to cope with social difficulties. The aim of this study is to evaluate the quality of life (QOL) among family carers of people with intellectual disabilities. Materials and methods A census interview survey was conducted in Hsin‐Chu City in Taiwan and included the primary family caregivers of 792 adults with intellectual disability who were living with their families. The survey packet contained the WHOQOL‐BREF Taiwan‐version scale with four core domains and the activities of daily life/instrumental activities of daily life (ADL/IADL) scales. Results The mean score for ‘physical’ was highest and that for ‘environment’ was lowest. The strongest predictors of caregivers QOL were the caregiver's health status, their family income and the level of severity of the intellectual disability of the adult. Conclusions The results of the study support the need to expand services and individualize support to families of adults with intellectual disability living in family homes.     

智力残疾儿童如厕困难的行为治疗

如厕困难的比例与智力残疾水平相关,而且在重度智力残疾者中更加常见。笔者回顾了如厕困难在分类、流行程度、后果和成因等方面的基本概况,探讨对智力残疾儿童如厕困难进行治疗的行为理论和具体程序。     

Constipation in childhood: a multidisciplinary approach to management in the community

Three per cent of children in the community may be affected by chronic constipation. Causes of constipation may be organic or functional: the cornerstone of management is thorough interview and physical examination to identify appropriate investigations, identify causes and decide on management. Whatever the cause, faecal impaction must be managed as the first phase of treatment using appropriate medications. Other strategies may include increasing the fibre content of the child's meals and increasing fluid intake. Getting into a regular toilet habit helps prevent constipation and a structured toileting programme promotes the resumption of faecal continence.     

The Relationship Between Adaptive Behavior and Specific Toileting Problems According to the Profile on Toileting Issues (POTI)

Toileting problems in people with intellectual disabilities are common but have rarely been studied. Recently, the Profile on Toileting Issues (POTI) was developed as a standalone measure to evaluate these problems. The POTI has established psychometrics. Research on interface between toileting problems in persons with intellectual disability and adaptive functioning is lacking. Eighty adults from two developmental centers were assessed to establish relationships between these skills. Greater toileting problems were strongly associated with greater deficits in adaptive skills. The implications of these findings are discussed.     

The Interrelationships of Psychopathology Symptoms on Social Skills in Adults with Autism or PDD-NOS and Intellectual Disability

Autism Spectrum Disorders (ASD) are debilitating, life long conditions which are known to co-occur with intellectual disability (ID) and comorbid psychopathology. All of these are risk factors, yet little has been done to explore the degree that these variables alone and in combination impact the well being of such persons. Three-hundred and two adults with severe or profound ID were studied. From the total sample, 137 evinced ASD (either autism or PDD-NOS). The Diagnostic Assessment for the Severely Handicapped-II (DASH-II) was used to assess psychopathology symptoms. Social behaviors were assessed using the Matson Evaluation of Social Skills for Individuals with sEvere Retardation (MESSIER). For participants with ASD, psychopathology symptoms, particularly impulse and mania, were associated with negative social behaviors (i.e., nonverbal, verbal, and general) as well as positive verbal and nonverbal social skills. For participants with ID only, impulse symptoms, as well as symptoms of mania, PDD/autism, anxiety, organic, and stereotypy were associated with negative social behaviors, but not positive social skills as was found for participants with ASD.     

Toilet training children with learning difficulties: what the literature tells us

Nurses and health visitors are the professional group most likely to be involved in advising and supporting parents of children with disabilities (Bliss and Watson, 1992). Little research has been done into assessing and treating urinary continence difficulties of children with learning difficulties and many questions remain unanswered: what is the extent of the problem; what specific intervention do children with learning difficulties require to attain toileting skills; what expectation can the parent and clinician have that children with learning difficulties can be toilet trained and who is best placed to promote toileting skills? The main findings from the literature will support health and education professionals and carers who are involved in toilet training children with learning difficulties.     

Sex- and Gender-Related Differences in Common Functional Gastroenterologic Disorders

Functional gastrointestinal (GI) disorders (FGIDs) result from central and peripheral mechanisms, cause chronic remitting-relapsing symptoms, and are associated with comorbid conditions and impaired quality of life. This article reviews sex- and gender-based differences in the prevalence, pathophysiologic factors, clinical characteristics, and management of functional dyspepsia (FD) and irritable bowel syndrome (IBS) that together affect approximately 1 in 4 people in the United States. These conditions are more common in women. Among patients with IBS, women are more likely to have severe symptoms and coexistent anxiety or depression; constipation or bloating and diarrhea are more common in women and men, respectively, perhaps partly because defecatory disorders, which cause constipation, are more common in women. Current concepts suggest that biological disturbances (eg, persistent mucosal inflammation after acute gastroenteritis) interact with other environmental factors (eg, abuse) and psychological stressors, which influence the brain and gut to alter GI tract motility or sensation, thereby causing symptoms. By comparison to a considerable understanding of sex-based differences in the pathogenesis of visceral hypersensitivity in animal models, we know less about the contribution of these differences to FGID in humans. Slow gastric emptying and colon transit are more common in healthy women than in men, but effects of gonadal hormones on colon transit are less important than in rodents. Although increased visceral sensation partly explains symptoms, the effects of sex on visceral sensation, colonic permeability, and the gut microbiome are less prominent in humans than rodents. Whether sex or gender affects response to medications or behavioral therapy in FD or IBS is unclear because most patients in these studies are women.     

Quality of life and physical functioning in HIV‐infected individuals receiving antiretroviral therapy in KwaZulu‐Natal,South Africa

KwaZulu‐Natal province, South Africa, accounts for 28.7% of the HIV infection total and one‐third of infections among youth and children in South Africa. The purpose of this study was to examine the variables of HIV/AIDS symptoms, social support, influence of comorbid medical problems, length of time adhering to antiretroviral therapy medications, quality of life, adherence to antiretroviral medications, and physical functioning in HIV‐infected individuals. Based on our model, the combination of these variables was found to determine physical functioning outcomes and adherence to HIV medications. Significant relationships were observed between physical functioning and the dependent variables of length of time on medications, comorbid health problems, and social support. A linear regression model was built to determine the degree to which these variables predicted physical functioning. In total, these predictor variables explained 29% of the variance in physical functioning. These results indicate that those individuals who reported a greater length of time on medications, fewer comorbid health problems, and greater social support had better physical functioning.     

Parental mentalising among mothers with intellectual disability or ADHD: Links with experiences of abuse,neglect and psychosocial risk

Background

Parental mentalising difficulties are robustly linked to caregiving problems. Mothers with intellectual disability are at risk for caregiving problems, but knowledge on their parental mentalising abilities is lacking. The present study aimed to fill this gap.

Method

Thirty mothers with mild intellectual disability, and 61 comparison mothers with ADHD, were assessed for parental mentalising using the Parental Reflective Functioning Questionnaire. Contributions of intellectual disability, maternal exposure to childhood abuse/neglect and psychosocial risk to parental mentalising were examined through hierarchical regression analysis.

Results

Mothers with intellectual disability had a heightened risk for parental mentalising difficulties, in the form of elevated prementalising. Intellectual disability and cumulative childhood abuse/neglect uniquely predicted prementalising among the mothers, whereas cumulative psychosocial risk added to the risk for prementalising specifically among mothers with intellectual disability.

Conclusions

Our findings support contextual models of caregiving, and suggest a need for mentalisation-based support for parents with mild intellectual disability.     

Behavioural sleep problems in children and adults with intellectual disabilities: An integrative literature review

Background

People with intellectual disabilities are more likely to experience sleep problems, which can affect quality of life, physical health, mental health and well-being.

Methods

An integrative literature review was conducted to investigate what is known about behavioural sleep disturbances in people with an intellectual disability. The search used the following databases: Scopus, PsycInfo and Cinahl, to find papers published since 2015.

Results

Within intellectual disability research, sleep appears as a common issue due to its high prevalence, negative relationships with an individual's physical and mental health, their quality of life, and impact of sleep problems on family or carers. The growing evidence base appears to support the use of behavioural, lifestyle and pharmacological interventions to improve sleep in people with an intellectual disability.

Conclusion

A wide array of literature provides evidence that people with intellectual disabilities are affected by and need support with their sleep.     

基于WHO-FICs架构智力残疾儿童青少年身体活动与运动康复的健康结局：系统综述的系统综述

目的 基于世界卫生组织国际分类家族(WHO-FICs)构建智力残疾儿童青少年参与身体活动和运动康复的健康和功能结局的研究架构,系统分析智力残疾儿童青少年的主要健康与功能障碍表现、参与身体活动的方案以及健康和功能结局。 方法 运用《国际疾病分类第十一次修订本》(ICD-11)和《国际功能、残疾和健康分类》(ICF),对智力残疾儿童青少年身体活动干预方案以及健康与功能结局进行系统分析,构建智力残疾儿童青少年健康与功能状况、身体活动干预方案以及健康与功能结局架构。检索Scopus、PubMed、Embase、Web of Science、中国知网、维普、万方数据,收集建库至2022年8月18日公开发表的智力残疾儿童青少年参与身体活动与运动康复的健康及功能结局的系统综述,进行系统综述。 结果 最终纳入系统综述8篇,来自5个国家,包括190项随机对照试验和7 011例参与者,研究领域主要涉及智力障碍、儿童神经病学、康复科学、残疾与健康、适应性体育、特殊教育等,发表时间集中在2018年至2022年。常见的健康状况主要有唐氏综合征、孤独症谱系障碍、脆性X综合征、Prade-Willi综合征、智力障碍、认知障碍;身体活动干预形式分为体适能类、技能类和活动类3类,活动频率每周1~5次,活动强度为中-高强度,持续时间1周~1.5年;健康结局体现在智力功能和适应性行为、身体活动、心理行为健康与社会适应、整体生活质量和福祉方面。 结论 基于WHO-FICs构建了智力残疾儿童青少年参与身体活动和运动康复的健康效果的理论架构。智力残疾儿童青少年主要功能障碍表现为智力功能和适应性行为、活动和心理健康、生活质量和福祉3个层面。其中智力功能和适应性行为层面涉及概念性技能、社交性技能和实践性技能,活动和参与层面表现为低体育活动参与度、久坐和肥胖,活动能力低,没有发展基本运动能力和身体素质。生活质量和福祉层面涉及情绪和情感、自尊、一般自我概念、幸福感、友谊、与他人的关系或社会成熟度、生活质量和福祉等。身体活动方式可以分为体适能类、技能类和运动项目类。主要健康和功能结局主要表现在三个领域：智力功能与适应性行为,活动和参与以及心理行为健康与社会适应、生活质量和福祉。在智力功能和适应性行为领域,主要健康结局涉及认知功能(执行功能、认知可塑性、工作记忆等)、心理功能(情绪自我控制、自我价值和自尊)。在活动和参与领域,主要健康结局涉及体适能(肌力和肌耐力、速度、灵敏性)和动作技能(基本动作技能、平衡、核心稳定性),提高体育活动参与度,促进其更好地适应与赋能(社交、亲社会行为等),达成健康目标(降低疾病风险、缓解焦虑和抑郁、肥胖管理)。在心理行为健康与社会适应、生活质量和福祉领域,参与身体活动与运动康复可以提升儿童青少年整体的生活质量和福祉。     

The use of novel promotility and prosecretory agents for the treatment of chronic idiopathic constipation and irritable bowel syndrome with constipation

Chronic idiopathic constipation (CIC) and irritable bowel syndrome with constipation (C-IBS) are commonly reported gastrointestinal (GI) disorders that have a major impact on health and quality of life. Patients experience a range of symptoms of which infrequency of bowel movement is but one and report that straining, the production of hard stools, and unproductive urges are more bothersome than stool infrequency. Additionally, in C-IBS, patients report abdominal pain and bloating as particularly troubling. Traditional treatments, such as laxatives, are often ineffective, especially in more severe constipation over the long term. In a population-based survey of constipation sufferers, half were not satisfied with their current treatment, due predominantly to poor efficacy. 5-Hydroxytryptamine receptor 4 (5-HT₄) agonists stimulate GI motility and intestinal secretion, and tegaserod has demonstrated efficacy in improving bowel habit. Tegaserod also improves constipationassociated symptoms including bloating, abdominal discomfort, stool consistency, and straining in patients with both CIC and C-IBS. However, tegaserod has been withdrawn due to an association with serious adverse cardiovascular effects. Further 5-HT₄ receptor agonists, including prucalopride and TD-5108 are in development and show exciting results in clinical studies in CIC patients, suggesting further product approvals are likely. Headache and diarrhea are the most commonly reported adverse event with this class of agent. Recently a novel prosecretory agent has been approved for the treatment of both CIC and C-IBS. Lubiprostone stimulates chloride secretion through activation of type-2 chloride channels, increasing intestinal secretion and transit, and its use has been associated with improvements in bowel habit and symptoms of constipation. Nausea, diarrhea, and headache are the most commonly reported adverse events. Linaclotide also stimulates intestinal chloride secretion, but this molecule achieves this indirectly, through the activation of guanylate cyclase C. Data are emerging, but the efficacy and safety profile of this agent in the treatment of CIC and C-IBS appears encouraging.     

Nurses' knowledge of constipation in people with learning disabilities

Constipation is considered a preventable problem in health care, yet this condition has received little attention in terms of preventive interventions and management in people with intellectual disabilities. While constipation is acknowledged as an important general health issue for this population group, symptoms are frequently masked as the intellectual disability often takes precedence, resulting in diagnostic overshadowing. Underestimations of the condition may result in delays in recognition and treatment which are further compounded by an inability among people with an intellectual disability to express discomfort verbally. Long-term, untreated constipation can have serious and potentially life-threatening consequences if symptoms go unrecognized or are not treated promptly. Therefore, all registered nurses treating people with intellectual disabilities must possess an in-depth knowledge of the condition to be able to prevent and manage this common condition.     

Opioid-induced bowel dysfunction: prevalence, pathophysiology and burden

As a result of the undesired action of opioids on the gastrointestinal (GI) tract, patients receiving opioid medication for chronic pain often experience opioid-induced bowel dysfunction (OBD), the most common and debilitating symptom of which is constipation. Based on clinical experience and a comprehensive MEDLINE literature review, this paper provides the primary care physician with an overview of the prevalence, pathophysiology and burden of OBD. Patients with OBD suffer from a wide range of symptoms including constipation, decreased gastric emptying, abdominal cramping, spasm, bloating, delayed GI transit and the formation of hard dry stools. OBD can have a serious negative impact on quality of life (QoL) and the daily activities that patients feel able to perform. To relieve constipation associated with OBD, patients often use laxatives chronically (associated with risks) or alter/abandon their opioid medication, potentially sacrificing analgesia. Physicians should have greater appreciation of the prevalence, symptoms and burden of OBD. In light of the serious negative impact OBD can have on QoL, physicians should encourage dialogue with patients to facilitate optimal symptomatic management of the condition. There is a pressing need for new therapies that act upon the underlying mechanisms of OBD.     

Long-term safety and clinical effectiveness of controlled-release metoclopramide in cancer-associated dyspepsia syndrome: a multicentre evaluation

Patients with cancer frequently report gastrointestinal symptoms such as anorexia, early satiety, nausea, vomiting, and bloating. A reduction of the severity of some of these symptoms would benefit the patient by enhancing quality of life and improving their treatment. Forty-eight patients (25 female and 23 male; mean age 63 +/- 11 years) with a minimum two-week history of cancer-associated gastrointestinal symptoms were assigned to a single, open-label treatment group and received controlled-release metoclopramide 20 mg-80 mg q12h for a maximum period of 12 weeks (mean 46 +/- 35 days). There was a 40%-60% decrease in the severity of nausea over the first two weeks of treatment, and an approximate 50% reduction in severity of vomiting over the first four weeks of treatment. Appetite and bloating also improved, although smaller and less consistent changes were observed. Patient ratings of overall clinical effectiveness with respect to relief from symptoms and tolerability of side effects indicated that controlled-release metoclopramide was highly and moderately effective in 36% and 30% of the patients, respectively. Controlled-release metoclopramide is a useful treatment for the management of gastrointestinal symptoms associated with the cancer-associated dyspepsia syndrome including nausea, vomiting, loss of appetite, and bloating.     

Hangekobokuto (Banxia-houpo-tang), a Kampo Medicine that Treats Functional Dyspepsia

Although abdominal bloating is one of the most bothersome symptoms experienced by patients with functional dyspepsia (FD), therapeutic drugs to relieve abdominal bloating have not been established. We investigated the Kampo (Chinese herbal) medicine, Hangekobokuto (Banxia-houpo-tang, HKT) for patients with FD from the standpoint of bowel gas retention. The bowel gas volume calculated from a plain abdominal radiogram (gas volume score, GVS) in FD patients was significantly higher than that in healthy subjects. Two week administration of HKT in the FD patients showed a significant decrease of GVS. Furthermore, gastrointestinal symptoms, especially symptoms of abdominal pain, indigestion and constipation, all of which are closely related to abdominal bloating, improved significantly in FD patients after the administration of HKT. These results suggest that HKT improves abdominal bloating accompanied by the reduction of bowel gas in FD patients.     

Pseudo-obstruction in children.

Pseudo-obstruction of the gastrointestinal tract is a rare disorder of impaired gastrointestinal motility. The more common symptoms of pseudo-obstruction in the infant or child include dysphagia, nausea, vomiting, abdominal distention, abdominal pain, and constipation. The majority of children have symptoms within the first year of life. Chronic cases of pseudo-obstruction are associated with neuropathic or myopathic changes in other parts of the body. Bladder dysfunction and neurological problems have been reported. The diagnosis of pseudo-obstruction is based on history, physical examination, radiographic studies and motility studies. Advances in medical technology have facilitated the identification of abnormal motility patterns in children. Therapy for pseudo-obstruction is primarily supportive. The use of motility agents has been unsuccessful in treating pseudo-obstruction. Nutritional and antibiotic therapy are the mainstays of treatment. Nursing interventions, patient/family education and advances in home care technology have improved the quality of life for children with pseudo-obstruction. Small bowel transplantation offers hope for the future.