ABSTRACT
BACKGROUND: Trauma and its sequelae is recognised as a major morbidity factor in people with intellectual disabilities, however, a lack of inquiry into how health care professionals address trauma in this adult population exists. AIMS: To explore specialist intellectual disability practitioners perspectives on current health provision and developments to address trauma. METHODS: Twenty-five qualitative interviews were conducted with practitioners across 6 health service areas in the UK. Data were analysed using thematic content analysis. FINDINGS: Seven central themes emerged: (a) unmasked trauma; (b) trauma informed care; (c) person-centred care and support; (d) multi-disciplinary working; (e) reasonable adjustments; (f) barriers to treatment and (g) awareness, training and education. CONCLUSION: Trauma-informed care and multi-disciplinary working are essential components for future service development. Advances in the evidence-base for effective psychological interventions for PTSD and training and education of health care staff are needed in order to improve service provision amongst this population.
Subject(s)
Health Personnel , Intellectual Disability/psychology , Stress Disorders, Post-Traumatic/psychology , Allied Health Personnel , Female , Humans , Intellectual Disability/complications , Male , Nurses , Patient-Centered Care , Psychiatry , Psychological Trauma/complications , Psychological Trauma/diagnosis , Psychological Trauma/psychology , Psychological Trauma/therapy , Psychology , Qualitative Research , Social Support , Social Workers , Stress Disorders, Post-Traumatic/complications , Stress Disorders, Post-Traumatic/diagnosis , Stress Disorders, Post-Traumatic/therapy , United KingdomABSTRACT
OBJECTIVE: To report the results of the first randomized feasibility trial of Eye Movement Desensitization and Reprocessing (EMDR) plus Standard Care (SC) versus SC alone for DSM-5 posttraumatic stress disorder (PTSD) in adults with intellectual disabilities. METHOD: A total of 29 participants were randomized to either to EMDR + SC (n = 15) or SC (n = 14). Participants completed measures on traumatic stress (PCL-C) and comorbid distress at baseline, 1 week post-treatment and 3-month follow-up. RESULTS: In the EMDR + SC group, 9 (60%) participants at post-treatment and 7 (47%) participants at 3-month follow-up were diagnosis free. In SC, 4 (27%) at post-treatment and follow-up were diagnosis free. At post-treatment, three participants (20%) dropped out from the EMDR + SC group, and 1 (7%) dropped out from the SC group. CONCLUSIONS: It is feasible, acceptable and potentially effective to deliver EMDR in this population group.
Subject(s)
Eye Movement Desensitization Reprocessing/methods , Intellectual Disability , Persons with Mental Disabilities , Stress Disorders, Post-Traumatic/therapy , Adult , Diagnostic and Statistical Manual of Mental Disorders , Feasibility Studies , Female , Follow-Up Studies , Humans , Male , Middle Aged , Outcome Assessment, Health Care , Qualitative Research , Single-Blind MethodABSTRACT
BACKGROUND: Dementia is very common in Down syndrome (trisomy 21) adults. Statins may slow brain amyloid ß (Aß, coded on chromosome 21) deposition and, therefore, delay Alzheimer disease onset. One prospective cohort study with Down syndrome adults found participants on statins had reduced risk of incident dementia, but there are no randomised controlled trials (RCTs) on this issue. Evidence is sparse on the best instruments to detect longitudinal cognitive decline in older Down syndrome adults. METHODS: TOP-COG was a feasibility/pilot, double-blind RCT of 12 months simvastatin 40 mg versus placebo for the primary prevention of dementia in Alzheimer disease in Down syndrome adults aged 50 years or older. Group allocation was stratified by age, apolipoprotein E (APOE) ε4 allele status, and cholesterol level. Recruitment was from multiple general community sources over 12 months. Adults with dementia, or simvastatin contraindications, were excluded. Main outcomes were recruitment and retention rates. Cognitive decline was measured with a battery of tests; secondary measures were adaptive behaviour skills, general health, and quality of life. Assessments were conducted pre randomisation and at 12 months post randomisation. Blood Aß40/Aß42 levels were investigated as a putative biomarker. Results were analysed on an intention-to-treat basis. A qualitative sub-study was conducted and analysed using the Framework Approach to determine recruitment motivators/barriers, and participation experience. RESULTS: We identified 181 (78 %) of the likely eligible Down syndrome population, and recruited 21 (11.6 %), from an area with a general population size of 3,135,974. Recruitment was highly labour-intensive. Thirteen (62 %) participants completed the full year. Results favoured the simvastatin group. The most appropriate cognitive instrument (regarding ease of completion and detecting change over time) was the Memory for Objects test from the Neuropsychological Assessment of Dementia in Individuals with Intellectual Disabilities battery. Cognitive testing appeared more sensitive than proxy-rated adaptive behaviour, quality of life, or general health scores. Aß40 levels changed less for the simvastatin group (not statistically significant). People mostly declined to participate because of not wanting to take medication, and not knowing if they would receive simvastatin or placebo. Participants reported enjoying taking part. CONCLUSION: A full-scale RCT is feasible. It will need 37 % UK population coverage to recruit the required 160 participants. Information/education about the importance of RCT participation is needed for this population. TRIAL REGISTRATION: ISRCTN67338640 .
