Accessible Summary People with intellectual disability do not often take part in research. When people with intellectual disability are thinking about taking part in research, it is important that they are given support to participate in the decision‐making. This study describes how an informed consent process was developed for people with intellectual disability and how it is working in a current study. Abstract BackgroundPeople with intellectual disability encounter substantial healthcare discrepancies, yet are under‐represented in research. While people with intellectual disability can make valuable contributions to research and consequently improve their quality of life, researchers encounter multiple challenges including them in research. One challenge is to support them in making an informed decision to participate in research. Therefore, the aim of this study was to describe and reflect on a consent procedure used while gaining informed consent, when recruiting potential participants into an ongoing study. MethodsA systematic and holistic consent procedure, underpinned by ethical guidelines, was developed and used alongside recommended strategies to engage people with intellectual disability in a research study. ResultsOnly three participants (7.5%) were deemed capable of consenting independently, while 37 participants (92.5%) required the support of a proxy. Of these 37 participants, 22 participated in the consent process, while 15 depended mainly on their caregiver to make decisions for them. Adapted communication strategies were found to facilitate a person who has an intellectual disability's participation in the consent procedure. The adapted written information sheets were of secondary importance. ConclusionThe consent procedure was a respectful means of determining a person's capacity to consent and indicating where there was a need for proxy consent. Appropriate communication strategies and the inclusion of familiar caregiver(s) were critical components for facilitating the person with an intellectual disability to participate in the consent procedure.
Background People with intellectual disability (ID) experience age‐related changes earlier in life, and as such, falls among people with ID are of serious concern. Falls can cause injury and consequently reduce quality of life. Limited studies have investigated the incidence of falls among people with ID and the associated risk factors. The purpose of this study was to investigate the incidence of falls and risk factors for falling in people with ID living in the community. Methods A prospective observational cohort (n = 78) of community‐dwelling adults with ID. Characteristics measured at baseline included falls history, medication use, balance and mobility. Falls were reported for 6 months using monthly calendars and phone calls. Data were analysed using univariate and multivariate logistic regression to identify risk factors associated with falling. Results Participants [median (interquartile range) age 49 (43–60) years, female n = 32 (41%)] experienced 296 falls, with 36 (46.2%) participants having one or more falls. The incidence of falls was 5.7 falls (injurious falls = 0.8) per person year (one outlier removed from analysis). A history of falls [adjusted odds ratio (OR): 6.37, 95% confidence interval (CI) (1.90–21.34)] and being ambulant [adjusted OR: 4.50, 95% CI (1.15–17.67)] were associated with a significantly increased risk of falling. Falls were significantly less frequent among participants taking more than four medications [adjusted OR: 0.22, 95% CI (0.06–0.83)] and participants who were continent [adjusted OR: 0.25, 95% CI (0.07–0.91)]. Conclusions People with ID fall at a younger age compared with the broader community. The associated falls risk factors also differ to older community‐dwelling adults. Health professionals should prioritise assessment and management of falls risk in this population.
Background Falls among adults with intellectual disability (ID) frequently cause physical injury and may negatively impact on quality of life. Studies investigating falls among people with ID have used differing methods and populations, making it difficult to determine the scope and extent of this problem. Objective To synthesize the best available evidence to determine the incidence and prevalence of falls among adults with ID. Inclusion criteria Types of participants This review considered all studies that included adults with ID aged 18 years and older. Condition The current review considered studies which reported percentage/numbers of individuals who fell, and the total number of falls and injurious falls sustained from a fall. Context Studies were included if they were conducted within community or residential settings. Studies that were conducted in hospitals were excluded. Types of studies Cohort studies, case-control and cross-sectional studies were included. Studies that used an experimental design, both randomized controlled and quasi experimental design were also included. Search Strategy Methods A three-step search strategy was undertaken for published and unpublished literature in English from 1990 to 2017. An initial search of MEDLINE and CINAHL was undertaken before a more extensive search was conducted using keywords and index terms across 11 electronic databases. Methodological Quality Two independent reviewers assessed the methodological quality of the included studies using Joanna Briggs Institute standardized critical appraisal instrument for prevalence studies (Joanna Briggs Institute Critical Appraisal Checklist for Studies Reporting Prevalence Data). Data extraction Data was extracted using the standardized extraction tool from the Joanna Briggs Institute's System of the Unified Management, Assessment and Review Information. Data that directly reported or could be used to calculate the incidence and prevalence of falls were extracted. Data synthesis Quantitative data for the number (proportion) of people who fell were pooled in statistical meta-analysis using STATA version 14. Data measuring incidence of falls (rate of falls for the duration of the study) and incidence of injurious falls (rate of falls resulting in one or more injuries for the duration of the study) could not be pooled in meta-analysis, hence results were presented in a narrative form including tables. Standard GRADE (Grading of Recommendations Assessment, Development and Evaluation) evidence assessment of outcomes is also reported. Results Nine studies were eligible for inclusion in this review. Eight articles were observational cohort studies which reported on the incidence/prevalence of falls as outcome measures, one article was a quasi-experimental study design. Overall the methodological quality of the included studies was considered moderate. The pooled proportion of people with ID who fell (4 studies, 854 participants) was 39% [95% CI (0.35%-0.43%), very low GRADE evidence]. The rate of falls (8 studies, 782 partici...
The objective of this review is to synthesize the best available evidence to determine the incidence and prevalence of falls in adults with intellectual disability living in the community.
Study design and methods:A state-wide point prevalence survey of patients and their medical records was conducted across 20 hospitals, over 17 days during May 2014. The survey determined rates of: provision of verbal information to patients; completion of a falls risk screening tool and age based cognitive testing. Univariate and multivariate logistic regression was utilised to determine key risks and opportunities to improve.Results: Information was collected from 2,720 patients. The provision of verbal information to prevent falls, as recalled by patients was 60% (hospital range 35-88%). This was significantly higher for patients with a stay of six or more days or involved in rehabilitation care. Perinatal women were three times less likely to be provided with verbal falls prevention information. A falls risk screening tool was completed for 82% of patients (range 28-98%). Perinatal women, and both adult and paediatric patients compared to older adults, were significantly less likely to have a complete falls risk screening tool. Thirty seven percent of patients within the recommended age ranges had cognitive testing (range 0-87%). Short-term patients and those not involved in rehabilitation, were significantly less likely to have been tested.
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