What are the views of adults with an intellectual disability (AWID), carers and healthcare professionals on a community falls management programme for AWID: a qualitative interview study in the UK.

OBJECTIVES: The aim of this study was to refine a draft of the ACTiON FALLS LD programme based on the views of adults with an intellectual disability (AWID), carers and healthcare professionals (HCPs). DESIGN, SETTING AND PARTICIPANTS: The semistructured interview study included HCP as well as AWID and carers supporting AWID living in the community. Community settings included sheltered living, supported living, AWID living at home with family carers or independently. The interview study explored the first draft of the ACTiON FALLS LD programme as well as the wider falls management for AWID. Interviews with AWID were developed to include a range of approaches (eg, case studies, pictures) to support inclusive participation. Individual interviews were digitally recorded and transcribed. Researcher notes were used during interviews with AWID. All data were analysed using the principles of framework analysis. RESULTS: 14 HCP, 8 carers and 13 AWID took part in the interview process. Five key themes were identified: programme components, programme design, programme approach, who would use the programme and programme delivery. CONCLUSIONS: The views of AWID, HCP and carers showed the need to consider the impact of risk perception, anxiety and fear of falling in the adaption of the ACTiON FALLS programme. The programme needs to be accessible and support the inclusion of AWID in managing falls and ultimately fulfil the requirement for a proactive and educational tool by all.

Maximising engagement and participation of intellectual disability staff in research: Insights from conducting a UK-wide survey.

AIM: This article explores ways of maximising engagement of intellectual disability staff as research participants, research advisers and research implementers. METHOD: The authors describe and reflect on a three-phased strategy in recruiting front-line staff (n = 690) working for intellectual disability service providers (n = 25) to participate in a UK-wide anonymous online survey about death, dying and bereavement. RESULTS: Important elements in engaging participants were: involving stakeholders at all stages of the research process, which includes: building relationships with participating organisations; enlisting organisational management support at all levels; an attractive and well laid-out collection tool; a well-structured recruitment strategy; time and flexibility; and a varied and targeted dissemination strategy. However, the recruitment method had limitations, in particular around representativeness, bias and generalisability. CONCLUSIONS: Staff in intellectual disability services can be enthusiastic and invaluable research participants. Active engagement between researchers, participating organisations and stakeholder groups is key to ensuring involvement of intellectual disability staff with research.

Communicating about death and dying with adults with intellectual disabilities who are terminally ill or bereaved: A UK-wide survey of intellectual disability support staff.

BACKGROUND: Illness and death are part of life for everyone, including people with intellectual disabilities. This study investigated the extent to which staff communicate about death with people with intellectual disability facing terminal illness or bereavement. METHOD: Staff who support people with intellectual disability in the UK (n = 690) completed an electronic survey. Detailed data were obtained from staff where a client had died in the past 12 months (n = 111), was terminally ill (n = 41) or had been bereaved (n = 200). Analysis included descriptive and chi-squared statistics. RESULTS: 52.6% of people with intellectual disability who were terminally ill were told about their illness, and 18.1% were told they would die. Of those experiencing an anticipated bereavement, 32.4% of staff said no one talked about this with them beforehand. A quarter of staff had received training on end of life or bereavement. CONCLUSION: Death affects many people with intellectual disability. Staff require training and support in communicating death.

Reasonable adjustments to provide equitable and inclusive assessment, screening and treatment of osteoporosis for adults with intellectual disabilities: A feasibility study.

BACKGROUND: People with intellectual disabilities are a high risk population for developing osteoporosis and fragility fractures, yet they experience barriers to accessing dual-energy x-ray absorptiometry (DXA) bone mineral density (BMD) screening and fracture assessment. Reasonable adjustments are a statutory requirement in the UK, but there is a paucity of evidence-based examples to assist their identification, implementation and evaluation. METHOD: Thirty adults with intellectual disabilities underwent DXA BMD screening and fracture risk assessment. Reasonable adjustments were identified and implemented. RESULTS: The presence of osteopenia or osteoporosis was detected in 23 out of 29 (79%) participants. Osteoporosis professionals report that 17 of 18 reasonable adjustments identified and implemented are both important and easy to implement. CONCLUSION: Adults across all levels of intellectual disabilities can complete DXA BMD screening with reasonable adjustments. Widely implementing these reasonable adjustments would contribute to reducing inequalities in health care for adults with intellectual disabilities.

Injuries Reported and Recorded for Adults with Intellectual Disabilities Who Live with Paid Support in Scotland: a Comparison with Scottish Adults in the General Population.

BACKGROUND: Providers of supported living services to adults with intellectual disabilities (IDs) in the United Kingdom have procedures in place to monitor injuries; this provides opportunity to learn about the injuries being reported and recorded. The aim was to determine the incidence, causes and types of injuries experienced by 593 adults with intellectual disabilities who live with paid support in a 12-month period. METHOD: Injury data, collected via a standard electronic injury monitoring system, were compared with data collected for a matched sample of the general population in the same year. RESULTS: The adults with intellectual disabilities experienced a higher rate of injury. Falls were the commonest cause of injury for both samples, but significantly more so for the adults with intellectual disabilities. CONCLUSIONS: The higher rate of injuries, particularly minor injuries, being reported suggests a culture of injury reporting and recording within these supported living services. Electronic injury monitoring is recommended for organizations providing supported living services for adults with intellectual disabilities.

Multimethod Resolution of a Small-Scale Case of Commingling.

This study highlights the use of multiple methods for resolving a case of commingled human remains. Skeletal remains were located in a marijuana field in rural northern California by law enforcement. Although initially buried in shallow graves, the remains of two decedents were disturbed by large carnivores and scattered over a wide area. The remains were submitted by law enforcement for forensic anthropological analysis and resolution of commingling. To segregate the remains of the two individuals, a number of methods were employed, including: (i) physical matching of fragmented remains; (ii) articulation to evaluate joint congruence; (iii) visual pair-matching of bilateral elements; (iv) osteometric pair-matching; (v) evaluation of taphonomic patterns; (vi) DNA analysis; and (vii) portable X-ray spectrometry (pXRF). This multimethod approach resulted in accurate resolution of the commingling and facilitated reconstruction of the biological profiles, taphonomic patterns, and trauma analysis for each individual.

'How families live ' - the views and experiences of parent-carers who provide family placements to intellectual disability nursing students.

AIM: We aimed to learn about the value of family placements from the perspective of parent-carers who provide them to nurse students via a Scottish university Family Placement Scheme. METHOD: Qualitative interviews were conducted with seven parent-carers who provided a family placement over two academic years. Descriptive data was analysed, organized into themes and subject to content analysis: parents' descriptions of caring; their perceived value of family placements; and their views and experiences of participation in intellectual disability nurse education. RESULTS: Family placements are beneficial to nurse students and families with children with an intellectual disability. Description of wider aspects of caring was provided, offering insight into learning experiences of students on placement. CONCLUSION: This model of learning provides opportunities for students to appreciate the reality of caring for a relative with an intellectual disability at home. Students develop their practice skills for working in partnership with family carers.

Test-retest reliability and agreement of physical fall risk assessment tools in adults with intellectual disabilities.

BACKGROUND: Physical decline and high rates of inactivity lead to an increased risk of falling in the intellectual disability (ID) population. It is important therefore to develop interventions to prevent falls and to develop valid and reliable assessment tools, which are suitable for use with people with ID. Targeting the most important fall risk factors such as strength, balance and gait measurement is important, yet there is a paucity of previous research on testing the feasibility and reliability of strength, balance and gait assessments with people with ID. AIMS: The aims of this study are (i) to describe the test-retest reliability and agreement [standard error of measurement (SEM)] of slightly adapted fall risk assessments and (ii) to describe the test-retest reliability and SEM of these tests in younger and older age groups and mild/moderate and severe/profound ID-level groups. METHODS: Residents of a German residential facility for people with ID were asked to take part. The study has a test-retest design, whereby all participants were tested twice, with 7 days in-between the first (T1) and second (T2) testing days. The 'timed up and go', '30-second chair stand', 'handgrip' and 'Romberg balance test' were all performed. Intraclass correlation coefficient (ICC) (2,1) values and SEM were calculated for the full sample, two age groups (split at the age of 60 years) and mild/moderate and severe/profound ID-level groups. RESULTS: A total of 37 residents with a mean age of 59.3 years (standard deviation = 17.7) performed the tests on both testing days. Mainly moderate to excellent ICC values were found for all tests for the full sample and in all groups (0.59-0.97). Different SEM values were found for full sample and sub-groups. CONCLUSION: Strength, balance and gait assessment tools, which are easy to use and understand, were found to be reliable in adults with ID. The SEM is most important for interpreting the real effects of an intervention. Further analyses will be required to gain more information about the SEM in different age groups or ID-level groups.

Promoting exercise as part of a physiotherapy-led falls pathway service for adults with intellectual disabilities: a service evaluation.

BACKGROUND: People with intellectual disabilities experience high rates of falls. Balance and gait problems are common in people with intellectual disabilities, increasing the likelihood of falls; thus, tailored exercise interventions to improve gait and balance are recommended. The present authors set up a physiotherapy-led falls pathway service (FPS) for clients with intellectual disabilities to promote exercise and prevent falls. METHOD: Fifty clients with intellectual disabilities were referred in an 18-month period, 35 (70%) were prescribed exercise and 27 (54%) completed the exercise programme. The FPS was evaluated using the following outcome measures: Tinetti score, number of falls, clinician's judgement and carer's judgement. RESULTS: Improvement in balance and mobility and a decrease in the number of falls were reported post-exercise intervention. CONCLUSION: Physiotherapists have a key role to play in promoting exercise to prevent falls in services for people with intellectual disabilities. This evaluation suggests positive outcomes for these clients to reduce or prevent further falls.

The prevalence and incidence of mental ill-health in adults with autism and intellectual disabilities.

The prevalence, and incidence, of mental ill-health in adults with intellectual disabilities and autism were compared with the whole population with intellectual disabilities, and with controls, matched individually for age, gender, ability-level, and Down syndrome. Although the adults with autism had a higher point prevalence of problem behaviours compared with the whole adult population with intellectual disabilities, compared with individually matched controls there was no difference in prevalence, or incidence of either problem behaviours or other mental ill-health. Adults with autism who had problem behaviours were less likely to recover over a two-year period than were their matched controls. Apparent differences in rates of mental ill-health are accounted for by factors other than autism, including Down syndrome and ability level.

Incidence and predictors of mental ill-health in adults with intellectual disabilities: prospective study.

BACKGROUND: The point prevalence of mental ill-health among adults with intellectual disabilities is 40.9%, but its incidence is unknown. AIMS: To determine the incidence and possible predictors of mental ill-health. METHOD: Prospective cohort study to measure mental ill-health in adults with mild to profound intellectual disabilities. RESULTS: Cohort retention was 70% (n=651). The 2-year incidence of mental ill-health was 16.3% (12.6% excluding problem behaviours, and 4.6% for problem behaviours) and the standardised incidence ratio was 1.87 (95% CI1.51-2.28). Factors related to incident mental ill-health have some similarities with those in the general population, but also important differences. Type of accommodation and support, previous mental ill-health, urinary incontinence, not having impaired mobility, more severe intellectual disabilities, adult abuse, parental divorce in childhood and preceding life events predicted incident ill-health; however, deprivation, other childhood abuse or adversity, daytime occupation, and marital and smoking status did not. CONCLUSIONS: This is a first step towards intervention trials, and identifying subpopulations for more proactive measures. Public health strategy and policy that is appropriate for this population should be developed.

Psychosis and adults with intellectual disabilities. Prevalence, incidence, and related factors.

OBJECTIVE: To determine the point prevalence, incidence, and remission over a 2-year period of psychosis in adults with intellectual disabilities, and to investigate demographic and clinical factors hypothesised to be associated with psychosis. METHOD: A population-based cohort of adults with intellectual disabilities (n = 1,023) was longitudinally studied. Comprehensive face-to-face mental health assessments to detect psychosis, plus review of family physician, psychiatric, and psychology case notes were undertaken at two time points, 2 years apart. RESULTS: Point prevalence is 2.6% (95% CI = 1.8-3.8%) to 4.4% (95% CI = 3.2-5.8%), dependant upon the diagnostic criteria employed. Two-year incidence is 1.4% (95% CI = 0.6-2.6), and for first episode is 0.5% (95% CI = 0.1-1.3). Compared with the general population, the standardised incidence ratio for first episode psychosis is 10.0 (95% CI = 2.1-29.3). Full remission after 2 years is 14.3%. Visual impairment, previous long-stay hospital residence, smoking, and not having epilepsy were independently associated with psychosis, whereas other factors relevant to the general population were not. CONCLUSIONS: The study of psychosis in persons with intellectual disabilities benefits the population with intellectual disabilities, and advances the understanding of psychosis for the general population. Mental health professionals need adequate knowledge in order to address the high rates of psychosis in this population.