5th ECRM: IASSIDD European Congress 2015 - Västerås, Sweden (22-23 September)
For the 5th Early Career Researchers Meeting (ECRM) 22 early career researchers coming from 6 different countries (N, B, S, UK, C, CH) and 4 enthusiastic senior researchers came together to exchange ideas and discuss different topics.
The first day started with presentations of Gineke Hanzen (Visio, Netherlands) and Dinette van Timmeren (Hanze University, Netherlands). Gineke Hanzen talked about the use of online concept mapping to obtain information about the perspectives of parents, professionals, and experts on participation in adults with PIMD and presented the first results (link to abstract). Dinnette van Timmeren told more about her research on physical health issues (link to abstract). Next, brainstorming sessions on interesting topics in PIMD-research were conducted. Ines van Keer introduced her topic about small research samples in PIMD-research and Gertruud Schalen talked about the recruitment of participants with PIMD in a longitudinal study. We discussed the issues in subgroups and brought our ideas together. We finished the first day with a relaxed social dinner.
The second day, Katherine McKenzie (Queen’s University, Canada) presented her master thesis in Epidemiology on frailty as a predictor of institutionalization among people with ID, and asked for suggestions for further research especially in people with PIMD (link to abstract). Laura Jones introduced her recently started research on the influences of the language of instruction (Welsh and/or English) on access to the curriculum and inclusion. We discussed about her research proposal in general, and more specifically about the way of analysing video data. Finally, Juliane Dind told more about analysing video data and its difficulties. By using examples, we discussed about the interrater reliability in analysing video data of children with PIMD.
In summary, we have had very interesting presentations and useful discussions about doing research in people with PIMD. Thank you all, and we are looking forward seeing you at the next meeting!
The first day started with presentations of Gineke Hanzen (Visio, Netherlands) and Dinette van Timmeren (Hanze University, Netherlands). Gineke Hanzen talked about the use of online concept mapping to obtain information about the perspectives of parents, professionals, and experts on participation in adults with PIMD and presented the first results (link to abstract). Dinnette van Timmeren told more about her research on physical health issues (link to abstract). Next, brainstorming sessions on interesting topics in PIMD-research were conducted. Ines van Keer introduced her topic about small research samples in PIMD-research and Gertruud Schalen talked about the recruitment of participants with PIMD in a longitudinal study. We discussed the issues in subgroups and brought our ideas together. We finished the first day with a relaxed social dinner.
The second day, Katherine McKenzie (Queen’s University, Canada) presented her master thesis in Epidemiology on frailty as a predictor of institutionalization among people with ID, and asked for suggestions for further research especially in people with PIMD (link to abstract). Laura Jones introduced her recently started research on the influences of the language of instruction (Welsh and/or English) on access to the curriculum and inclusion. We discussed about her research proposal in general, and more specifically about the way of analysing video data. Finally, Juliane Dind told more about analysing video data and its difficulties. By using examples, we discussed about the interrater reliability in analysing video data of children with PIMD.
In summary, we have had very interesting presentations and useful discussions about doing research in people with PIMD. Thank you all, and we are looking forward seeing you at the next meeting!
Abstracts - ECR PIMD Meeting 2015 |
Operationalization concept Participation of adults with visual and severe or profound intellectual disabilities: perspectives of parents, professionals, and experts.
Gineke Hanzen The objective of our study is to define and operationalize the concept Participation of adults with visual and severe or profound intellectual disabilities. We asked parents/relatives, professionals, and experts of adults with visual and severe or profound intellectual disabilities for perspectives and statements about the concept Participation. Subsequently, we asked them to sort and rank these statements. Online concept mapping was used to obtain this information. In my short presentation, I would like to tell something about the background and design of the study, what’s done up to now, the upcoming plans, and if possible, the first results. Physical health issues in persons with severe or profound intellectual and motor disabilities (SPIMD) Dinette van Timmeren Introduction: People with SPIMD encounter numerous physical health problems. There is a risk for these problems to go unrecognized, which can lead to discomfort and pain. There are several studies reporting the need for health screening for people within the ID population. Given the interrelatedness of the disabilities in people with SPIMD and the different prevalence of physical health problems compared to people with less severe ID, the need for an adjusted health screening for people with SPIMD, is evident. Objective: 1) to determine the prevalence of physical health problems in adults with SPIMD; 2) to compare the results with data of our previous systematic review. Method: We conducted a cross-sectional study, using data obtained from medical and support records. A sample of adults with SPIMD was recruited in eight settings of five residential care providers for people with ID. Prevalence rates and 95% confidence intervals were calculated. Results: Medical and support records of 99 participants with SPIMD were included. A wide range of recorded physical health problems were found, with a mean of twelve problems per person. Very high prevalence rates (>50%) were found for constipation, visual impairment, epilepsy, spasticity, deformations, incontinence, and reflux. Compared with our previous systematic review a lower prevalence was found for anemia, thyroid dysfunction, parkinsonism, hypertension, osteoporosis and fractures and a higher prevalence was found for of epilepsy, spasticity, visual impairment, constipation and reflux. Discussion/Conclusion: A strength of the study is the use of medical and support records: therefore, we could provide an overview of a broad range of physical health problems. However, the reliance on reported physical health problems may cause an underestimation of the prevalence rate. Given the interrelatedness of the complex disabilities in people with SPIMD, further research regarding adjustment of measurements of physical health problems for people with SPIMD is necessary. After the presentation I would like to discuss the impact of these physical health problems and how to set priorities for screening. Frailty as a predictor of institutionalization among adults with intellectual and developmental disabilities. Katherine McKenzie Background: Frailty typically develops earlier and more frequently in adults with intellectual and developmental disabilities (IDD) compared to the general population, and subsequently, this population is at risk for higher care needs. Despite a shift towards community-based care to meet increasing demands, the population of individuals with IDD is at risk for admission, or re-admission, into long-term facilities. Methods: 3,034 individuals (aged 18 to 99 years) living in Ontario, Canada and assessed with the Resident Assessment Instrument – Home Care were followed during a four-year period. A frailty index, specific to persons with IDD, characterized individuals as frail, and the interRAI Changes in Health, End-stage disease, Signs and Symptoms (CHESS) scale, identified individuals with health instability. Cox proportional hazard models determined differences in rates of admission to long-term care. Results: Almost a quarter (22%) of the sample was admitted to long-term care. Controlling for age, sex, rural status, caregiver status, living situation, and cognition level, frail individuals had rates of admission two times greater than non-frail individuals (HR=2.19, 95% CI: 1.81-2.64). Using the CHESS, adults who were unstable had a greater risk of institutionalization compared to those who were stable (HR=1.52, 95% CI: 1.29-1.79). Conclusions: The frailty index specific to persons with IDD can predict institutionalization in adults of all ages and is a comparable measure of health vulnerabilities. Future areas of research include assessments of the feasibility of implementation of the frailty index as a routine indicator in health care settings. |