Exploring Falls in Individuals with Intellectual Disability

Introduction: Falling appears to be a concern for individuals with intellectual disability. To date few studies have looked at falls, fall-related injuries and risk factors for falls in this population. In contrast, extensive fall-related research has been carried out in older population groups and has used a variety of methods to collect fall data. The use of similar methods to collect fall data might however be inappropriate for individuals with intellectual disability. Cognitive limitations, consenting issues and using proxy sources for collecting fall data are some research challenges evident in intellectual disability research. This thesis developed methods for collecting fall data about people with intellectual disability and tested these methods in two pilot studies. Furthermore, semi-structured interviews were conducted with occupational therapists and physiotherapists to discuss possible mobility/fall prevention strategies and to suggest future fall prevention programmes. Study Aims: The aims of this thesis were: 1. To develop an appropriate method to collect data on falls and fall-related injuries in adults with intellectual disability. 2. To develop a method to collect fall risk data in adults with intellectual disability. 3. To suggest suitable fall prevention strategies for adults with intellectual disability Methodology: A mixed method design was chosen for this thesis using a sequential exploratory design. The initial phase of the study involved qualitative data collection (stakeholder consultations and focus group discussions) and analysis, for developing and validating fall forms, followed by quantitative pilot studies (for testing these forms). An initial structured literature review explored how falls data had been collected in older adults, including those with dementia and Alzheimer’s disease, and with people with intellectual disability. The stakeholder consultations were completed to discuss falls and appropriate methods for collecting fall data. Based on the literature review findings and stakeholder consultations, three fall forms were developed – a fall risk form, a fall incident form and a fall calendar. These forms were discussed in focus group discussions. The fall risk form and the fall incident form were selected as suitable methods and tested in two pilot studies. An additional qualitative study was also conducted wherein therapists working with people with intellectual disability at risk of falling were interviewed to explore strategies they used to reduce falls. Findings from this latter study together with those from the pilot studies were used to suggest strategies to prevent falls for this population group. Results: 1. A fall incident form was developed and used to collect detailed fall-related data following a fall incident. A total of 135 individuals participated in two pilot studies and 125 falls were recorded. The fall incident form was considered as a useful and easy tool for collecting post-fall data in individuals with intellectual disability. The most common location of a fall was indoors especially in the lounge and bedroom areas. Individuals were more likely to fall in a face down position resulting in facial injuries (e.g. grazes and bruise/crush). 2. A fall risk form was developed and used to collect potential risk factors for falls in individuals with intellectual disability. Completing the fall risk form appeared to be a complex process for staff/support workers and it is suggested that adequate training on completing the fall risk form should be given to support workers. Alternatively researchers should be responsible for collecting data on risk factors for falls using the developed form. Potential risk factors for falls identified in the testing of this form included a previous history of falls and fractures, presence of epilepsy, balance and gait impairments, behavioural issues and orthopaedic conditions. 3. From the therapists’ interviews, the main strategies suggested to reduce falls risk in individuals with intellectual disability were the prescription of physical activities /exercises (e.g. hydrotherapy and purposeful walking) and assistive devices, environmental modifications, and education of staff on how to prevent falls. Conclusion: Using the fall risk form and fall incident form, detailed fall data were collected about 135 individuals with intellectual disability. These forms can be used in other prospective studies investigating the incidence/prevalence of falls and its risk factors in adults with intellectual disability. The suggested strategies to prevent falls provides a starting point from which fall prevention programmes can be developed and evaluated