Objectives. With few empirically supported treatments, functional movement disorders (FMD) can be challenging to manage. To enable service providers to better support people with FMD, this study sought to understand the lived experience of FMD: to gain insight into how individuals make sense of their experience from symptom onset through medical evaluation and diagnosis to post-diagnostic adaptation.Design. An interpretative phenomenological analysis (IPA) of patient accounts of living with FMD.Methods. Eight participants were recruited from a UK teaching hospital adult neurology service: seven females, varying in age (20s-70s), FMD symptom type (tremor, dystonia, and tics), and time to diagnosis (10-192 months). Semi-structured interviews facilitated participant accounts of key events. Interviews lasted 75-125 minutes and were transcribed verbatim.Results. Three super-ordinate themes were apparent. The first covered the experiences of onset ('Something is wrong with me'), including loss of control -with the affected body part often described as a separate entity -threats to identity and disturbance in relationships. 'At last! What now?' outlined the bittersweet experience of diagnosis and of treatments. Third, 'Living my life with it' incorporated ongoing experiences of coping with symptoms. While some continued to struggle with the emotional impact of symptoms, others developed a compassionate relationship with their self and maintained satisfying activities.This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.
People with intellectual disabilities often have prolonged periods of dependence on support from others during their lives. Working indirectly with carers and staff who support adults with intellectual disabilities who may show significant distress or challenging behaviours, is an approach that may improve the quality of their interactions and functioning. This project evaluated a 12-week cognitive analytic therapy-informed group, to carers of adults with Intellectual Disability (ID) by comparing pre- and post-intervention scores on a global outcomes measure. We detected positive change in scores in global wellbeing after the group and these positive changes compared well to other studies. We reflect on the implications and shortcomings of the evaluation and make brief recommendations for future research and clinical practice.
The evidence base for psychodynamic psychotherapy for people with intellectual disabilities (ID) is mainly made up of case studies with a small number of open trials without control (Beail, 2016) and the development of the evidence base for psychological therapies is a priority. In this service evaluation, we estimated the significance and effect size of psychodynamic intervention in 66 cases from the time of assessment to case closure, using the Health of the Nation Outcome Scales for Learning Disability (HoNOS-LD). A significant and sizeable effect from assessment to case closure was detected on HoNOS-LD Total Score, with similar effects on subscale Factor Scores. A waiting list control condition for a smaller subset did not find significant overall change, and cases remaining within the service following intervention showed no deterioration after therapy. A relatively low number of sessions was required on average (13.7; median=8) but a dose-effect relationship was observed with more change associated with more sessions. We consider the shortcomings of this study and make recommendations for improved design of further studies.
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