Unscheduled healthcare for children with intellectual disabilities: A systematic scoping review.
Ontology highlight
ABSTRACT: Background
The provision of unscheduled healthcare for children with intellectual disability is less researched than that focused on hospital settings or for adult services. The aim of the scoping review was to map the evidence base in this area and identify areas for future study.Method
A five-stage scoping review framework was adopted. CINAHL, PubMed, SCOPUS, PsycINFO, Embase, ProQuest Dissertation & Theses and Google Scholar were searched. Studies published in English after 1/1/2000 were considered eligible for inclusion.Results
A total of 3158 titles and abstracts were screened, 137 full-text articles were reviewed, and 25 papers met the inclusion criteria. Descriptive themes focused on inequities, needs and experiences of families', poor GP training, and limitations of existing evidence.Conclusion
Describing trends in healthcare utilisation by this population is valuable for monitoring quality of healthcare, however, addressing observed inequities will require approaches that recognise specific issues within the health system that result in inequities.
SUBMITTER: Nicholson E
PROVIDER: S-EPMC9314007 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:ObjectivesPrevious reviews highlight the similarities in teaching healthcare and hygiene routines to individuals with and without intellectual and developmental disabilities. Additionally, similar interventions are used when interfering behaviors occur. Although these routines are topographically distinct, there are enough similarities to suggest effective procedures for one routine may be used to inform another. This scooping review aims to identify effective teaching and intervention procedures for healthcare and hygiene routines specifically for individuals with intellectual and developmental disabilities. We also evaluated the extent to which functional analyses were conducted; a dimension not included in previous reviews.MethodsEligible articles targeted compliance or tolerance within the context of a defined healthcare or hygiene routine as a dependent variable and used an experimental design with a demonstration of experimental control. Articles were identified through PsycINFO, PubMed, and Academic Search Premier databases. Additionally, a hand search of five related journals was conducted. Data were collected on dependent variables, functional analyses, baseline contingencies, teaching procedures, and additional experimental components.ResultsA total of 52 articles met inclusion criteria. Most experiments produced positive outcomes. The findings show all experiments involved a treatment package with multiple components. The most common teaching procedures were graduated exposure and DRA. A lack of functional analyses and social validity was noted.ConclusionsComponent analyses are needed to identify the most effective and efficient procedures. Pyramidal training to teach medical professionals how to provide preventative pyramidal training should be explored.Supplementary informationThe online version contains supplementary material available at 10.1007/s41252-022-00249-7.
| S-EPMC8918892 | biostudies-literature
Project description:Background: Families are integrally involved in day-to-day caregiving of children with neurodevelopmental and intellectual disabilities (NDID). Given the widespread and increasing prevalence of children with NDID and the impact of family caregiving on psychological, social, and economic implications for both the child and family, understanding and supporting these families is an important public health concern. Objective: We conducted a scoping review on peer support networks to understand their implications on families. Considering increasing prevalence of NDID's, understanding the implications of existing networks is critical to improve and nurture future support networks that can complement and reduce the burden on existing formal support systems. Design: A comprehensive search of multiple databases was conducted. Articles were screened by two reviewers and any disagreements were resolved by a third reviewer. We explored existing research on parent-to-parent peer support networks, which included networks that developed informally as well as those that involved a formal facilitator for the group interpersonal processes. There were no limits on the study design, date and setting of the articles. We included all research studies in English that included an identifier for (i) "peer support networks," (ii) "children with neurodevelopmental and intellectual disabilities" and (iii) "family caregiver outcomes." Results: We identified 36 articles. Majority of the studies were conducted in North America, and were face to face networks. They included families of children with a wide range of NDIDs. Relevant information extracted from different studies highlighted peer support network characteristics and development process, needs of family caregivers attending these networks, factors affecting caregiver participation and the impact of peer support networks on family caregivers. These networks represent a way to strengthen family caregivers, developing resilience and social interactions. Family caregivers sharing similar experiences support one another and provide critical information to each other. Although results are encouraging, future studies incorporating improved study designs are needed to better evaluate the effectiveness of peer support networks. Furthermore, studies where peer support networks develop organically while the child is supported are warranted. Conclusion: Although results obtained are encouraging, our findings support the need for further research studies of peer support networks with better designs and more detailed description of the factors involved in the development.
| S-EPMC8649771 | biostudies-literature
Project description:ObjectiveMental health problems are more prevalent in people with than without intellectual disabilities, yet treatment options have received little attention. The aim of this study was to identify and evaluate the effectiveness of pharmacological and psychological interventions in the treatment of mental health problems in children and adults with severe and profound intellectual disabilities, given their difficulties in accessing standard mental health interventions, particularly talking therapies, and difficulties reporting drug side effects.DesignA systematic review using electronic searches of PsycINFO, PsycTESTS, EMBASE, MEDLINE, CINAHL, ERIC, ASSIA, Science Citation Index, Social Science Citation Index and CENTRAL was conducted to identify eligible intervention studies. Study selection, data extraction and quality appraisal were performed by two independent reviewers.ParticipantsStudy samples included at least 70% children and/or adults with severe or profound intellectual disabilities or reported the outcomes of this subpopulation separate from participants with other levels of intellectual disabilities.InterventionsEligible intervention studies evaluated a psychological or pharmacological intervention using a control condition or pre-post design.OutcomesSymptom severity, frequency or other quantitative dimension (e.g., impact), as assessed with standardised measures of mental health problems.ResultsWe retrieved 41 232 records, reviewed 573 full-text articles and identified five studies eligible for inclusion: three studies evaluating pharmacological interventions, and two studies evaluating psychological interventions. Study designs ranged from double-blind placebo controlled crossover trials to single-case experimental reversal designs. Quality appraisals of this very limited literature base revealed good experimental control, poor reporting standards and a lack of follow-up data.ConclusionsMental ill health requires vigorous treatment, yet the current evidence base is too limited to identify with precision effective treatments specifically for children or adults with severe and profound intellectual disabilities. Clinicians therefore must work on the basis of general population evidence, while researchers work to generate more precise evidence for people with severe and profound intellectual disabilities.Prospero registration numberCRD 42015024469.
| S-EPMC6020952 | biostudies-literature
Project description:Individuals with intellectual disabilities (ID) are at high risk for high levels of sedentary behaviour. To inform the development of programmes to reduce sedentary behaviour, insight into the correlates is needed. Therefore, the aim of this study is to review the evidence on correlates of sedentary behaviour in adults with ID. We performed a systematic literature search in Ovid Medline, Ovid Embase, Web of Science and Google Scholar up to 19 January 2018, resulting in nine included studies that were published from 2011 to 2018. Correlates were categorized according to the ecological model. Studies predominantly focused on individual level correlates. Of those correlates studied in more than one study, having epilepsy was associated with less sedentary behaviour and inconsistent results were found for sex, genetic syndromes, weight status, physical health, mobility, level of ID, and mental health. Of the few interpersonal and environmental factors studied, only living arrangements were studied in more than one study, with inconsistent results. To date, we have limited and inconclusive evidence about correlates of sedentary behaviour in adults with ID. Only when future studies unravel correlates and determinants, across all domains of the ecological model, will the potential opportunities to improve health by reducing sedentary behaviour come within reach.
| S-EPMC6210806 | biostudies-other
Project description:BackgroundThe COVID-19 pandemic led to an abrupt shift to virtual health care for many patients, including adults with intellectual and developmental disabilities (IDD). Approaches to virtual care that are successful for people without IDD may need to be adapted for adults with IDD.ObjectiveThe aim of this scoping review was to examine what is known about virtual health care for adults with IDD and in particular, the impact of virtual delivery on access to care for this population.MethodsA comprehensive search was conducted of the academic and grey literature. A two-stage screening process was conducted by two independent reviewers and a structured data extraction template was populated for each included study. Findings were analyzed thematically using Access to Care Framework domains.ResultsIn total, 22 studies met inclusion criteria. The majority were published in the past three years and focused on specialized IDD services. A subset of 12 studies reported findings on access to care for adults with IDD. Participants generally reported high acceptability of virtual care, though some preferred face-to-face encounters. Initial results on effectiveness were positive, though limited by small sample sizes. Challenges included internet quality and technical skill or comfort.ConclusionsThis review suggests that it is possible to deliver accessible, high quality virtual care for adults with IDD, however, relatively little research has been conducted on this topic. Due to COVID-19 there is currently a unique opportunity and urgency to learn when and for whom virtual care can be successful and how it can be supported.
| S-EPMC9619129 | biostudies-literature
Project description:BACKGROUND:Caring for a child with intellectual disabilities can be a very rewarding but demanding experience. Research in this area has primarily focused on mothers, with relatively little attention given to the mental health of fathers. AIMS:The purpose of this review was to summarise the evidence related to the mental health of fathers compared with mothers, and with fathers in the general population. METHOD:A meta-analysis was undertaken of all studies published by 1 July 2018 in Medline, PsycINFO, CINAHL and EMBASE, using terms on intellectual disabilities, mental health and father carers. Papers were selected based on pre-defined inclusion and exclusion criteria. RESULTS:Of 5544 results, 20 studies met the inclusion criteria and 12 had appropriate data for meta-analysis. For comparisons of fathers with mothers, mothers were significantly more likely to have poor general mental health and well-being (standardised mean difference (SMD) -0.38, 95% CI -0.56 to -0.20), as well as higher levels of depression (SMD, -0.46; 95% CI -0.68 to -0.24), stress (SMD, -0.32; 95% CI -0.46 to -0.19) and anxiety (SMD, -0.30; 95% CI -0.50 to -0.10). CONCLUSIONS:There is a significant difference between the mental health of father and mother carers, with fathers less likely to exhibit poor mental health. However, this is based on a small number of studies. More data is needed to determine whether the general mental health and anxiety of father carers of a child with intellectual disabilities differs from fathers in the general population.
| S-EPMC6854361 | biostudies-literature
Project description:Despite evidence that inactivity is a major factor causing ill health in people with intellectual disabilities (pwID) there are gaps in our knowledge of their physical activity (PA). To date, there is no published systematic review of their PA levels. Therefore, we performed a systematic review from January-October 2015, comprising studies from across the globe to establish PA levels, determine how they were measured, and what factors influenced PA in adults with intellectual disabilities (awID). Five databases were searched. Studies were included if written in English, peer-reviewed, had primary research data, and measured PA levels of awID. Quality was assessed using a 19-item checklist. Meta-summary of the findings was performed and a meta-analysis of factors influencing PA using multiple regression. Fifteen studies were included consisting of 3159 awID, aged 16-81 years, 54% male and 46% female. Only 9% of participants achieved minimum PA guidelines. PA levels were measured using objective and subjective methods. ID severity, living in care, gender, and age were independently significantly correlated with the number of participants achieving PA guidelines with the strongest predictor being ID severity (Beta 0.631, p < 0.001). Findings should be in the context that most of the participants were in the mild/moderate range of ID severity and none of the studies objectively measured PA in people with profound ID. To inform measurement and intervention design for improved PA, we recommend that there is an urgent need for future PA studies in awID population to include all disability severity levels. PROSPERO registration number CRD42015016675.
| S-EPMC4929079 | biostudies-literature
Project description:INTRODUCTION:Although caring for a child with intellectual and developmental disabilities (IDD) can have positive outcomes, parents may be at a greater risk of depression and anxiety, due to a number of associated stressors, such as increased caregiver demands and financial strain. This systematic review updates previous data, exploring the relationship between parenting a child with IDD and parental depression and anxiety. METHODS:Five electronic databases were searched for eligible English-language articles, published between January 2004 and July 2018. All epidemiological study designs were eligible, provided the level of depression and/or anxiety was compared between parents of children (aged <18) with and without IDD. No limit was placed on geographic location. The proportion of positive associations between parenting a child with IDD and depression/anxiety were disaggregated by disability type, geographic region, and sample size. The percentage of parents at risk of moderate depression or anxiety were calculated using recognised clinical cut-off scores for each screening tool. Meta-analyses, in which pooled effect sizes of elevated depression and anxiety symptoms were calculated, were conducted across two IDD conditions, autism and cerebral palsy. RESULTS:Of the 5,839 unique records screened, 19 studies fulfilled the inclusion criteria. The majority of studies were conducted in high-income (n = 8, 42%) or upper-middle income countries (n = 10, 53%). Of the 19 studies, 69% focused on parents of children with cerebral palsy (n = 7, 37%) or autism (n = 6, 32%). Nearly all studies found a positive association between parenting a child with IDD and depression (n = 18, 95%) and anxiety (n = 9, 90%) symptoms. Factors associated with higher levels of depression symptoms amongst parents of children with IDD included disability severity (n = 8, 78%) and lower household income (n = 4, 80%). Approximately one third (31%) of parents of children with IDD reach the clinical cut-off score for moderate depression, compared with 7% of parents of children without IDD. 31% of parents of children with IDD reach the cut-off score for moderate anxiety, compared with 14% of parents of children without IDD. The meta-analyses demonstrated moderate effect sizes for elevated depression amongst parents of children with autism and cerebral palsy. CONCLUSIONS:Results indicate elevated levels of depressive symptoms amongst parents of children with IDD. Quality concerns amongst the existing literature support the need for further research, especially in low- and middle-income countries.
| S-EPMC6667144 | biostudies-literature
Project description:Screening and assessment of cognitive changes in adults with Intellectual Disabilities (ID), mainly Down Syndrome (DS), is crucial to offer appropriate services to their needs. We present a systematic review of the existing instruments assessing dementia, aiming to support researchers and clinicians' best practice. Searches were carried out in the databases Web of Science; PubMed; PsycINFO in March 2019 and updated in October 2020. Studies were selected and examined if they: (1) focused on assessing age-related cognitive changes in persons with ID; (2) included adults and/or older adults; (3) included scales and batteries for cognitive assessment. Forty-eight cross-sectional studies and twenty-seven longitudinal studies were selected representing a total sample of 6451 participants (4650 DS and 1801 with other ID). In those studies, we found 39 scales, questionnaires, and inventories, and 13 batteries for assessing cognitive and behavioural changes in adults with DS and other ID. The most used instrument completed by an informant or carer was the Dementia Questionnaire for Learning Disabilities (DLD), and its previous versions. We discuss the strengths and limitations of the instruments and outline recommendations for future use.
| S-EPMC7698112 | biostudies-literature
Project description:Research has suggested highly elevated levels of interpersonal trauma (IPT) among parents with intellectual disabilities (ID), and that such experiences may contribute to the caregiving and child developmental problems often seen in this population. Conflicting results have however been reported, and there is no systematic review on this matter. This study therefore systematically reviewed the empirical evidence concerning (a) prevalence of IPT among parents with ID, and links with (b) caregiving-relevant and (c) child developmental outcomes, in accordance with the PRISMA 2020 guidelines. Searches were conducted in MEDLINE, CINAHL, PsycINFO, and PTSDpubs. Peer-reviewed empirical articles reporting exposure to any form of systematically assessed IPT (unspecified IPT, physical, sexual, and emotional abuse, neglect, prolonged childhood separations from caregivers, witnessing abuse in the family) among parents with ID were included, yielding a final selection of 20 studies. Findings consistently indicated markedly elevated levels of IPT among parents with ID, with a majority (>50%) having experienced some form of IPT. Estimates for both unspecified and specific forms were typically higher than corresponding estimates in other groups at elevated risk, and than meta-analytical general population estimates in comparable countries. Findings regarding caregiving-relevant outcomes were mixed but indicated links with adverse outcomes, particularly regarding parental mental health. Reports pertaining to child developmental outcomes were scant and inconsistent. We highlight important limitations in the extant literature and provide directions for future research and clinical practice.
| S-EPMC10486176 | biostudies-literature