Background: Within the context of the Special Interest Research Group (SIRG) on Persons with Profound Intellectual and Multiple Disabilities (PIMD), researchers often discuss the methodological problems and challenges they are confronted with. The aim of the current article was to give an overview of these challenges. Methods: The challenges are centred on six topics. These reflect the main components of a study's design: (a) participant demarcation, (b) participant recruitment, (c) data collection and instruments, (d) data analysis, (e) ethics/including the "voice" of persons with PIMD and (f) theoretical models. Results: Next, to describing the specific challenges, possible solutions and pathways to address them are discussed. These are illustrated by recent studies by the authors and other researchers in the field. Conclusions: The current contribution wants to stimulate further discussion and exchange of ideas, and the development of creative research techniques.
Children with PIMD show social interest in each other during group activities. More knowledge is needed to create an environment which facilitates peer-directed behaviours of persons with PIMD.
Introduction: As opposed to studies focusing on staffs' attributions of challenging behavior (CB), relatively few studies have looked at how people with intellectual disabilities (ID) attribute such behaviors themselves, and a systematic overview is currently lacking. The aim of this review was to synthesize the evidence from qualitative studies on the attributions people with ID have concerning their own or other clients' CB. Methods: A systematic literature search was conducted in Embase, Medline Ovid, Web of science, Cochrane CENTRAL, PsychINFO Ovid, and Google Scholar. Studies were included if they focused on people with ID who report on attributions of their own or other clients' actual CB. The methodological quality of the studies was assessed using the Critical Appraisal Skills Programme (CASP) checklist. Result: A total of 10 studies were included. Three main types of factors subdivided in 13 sub-types were reported by clients as potential causes of CB: interpersonal factors (1 support staff, 2 other clients, 3 general, 4 life history), environmental factors (1 ward, 2 social exclusion, 3 situational factors) and intrapersonal factors (1 syndrome or diagnosis, 2 medical or physical symptoms, 3 psychological reasons, 4 emotions and feelings, 5 coping, 6 other). Conclusions: This thematic synthesis shows that clients with ID report a diverse range of attributions regarding their own or other clients' CB. This spectrum can be used as a framework for interpreting CB and for the development of appropriate support systems for people with ID demonstrating CB.
Around the world, increasing use is being made of health services and information delivered or enhanced over the Internet or related technologies, also referred to as eHealth (Eysenbach, 2001). This development may primarily be inspired by the potential of eHealth to improve the quality of the care provided while also upholding affordable care (Proudfoot et al., 2011). In addition, eHealth provides an opportunity for personalized, tailor-made, remote and on-demand support and treatment (
Persons with profound intellectual and multiple disabilities (PIMD) present limited peer-directed behaviors toward their peers with PIMD. It is not clear how staff can facilitate and promote the mutual peer-directed behaviors between persons with PIMD. In this study, we explored if peer-directed behaviors among persons with PIMD can be increased by an intervention that is focused on training the staff in providing social scaffolding behaviors toward their clients. An A-B-B 0 -C design was used in this study. A baseline condition was followed by two intervention conditions and a follow-up. Four staff members participated in a training in which they were informed about peer interactions in persons with PIMD and learned how to promote these interactions. They developed a peer interaction supportive activity. This activity was provided to two persons with PIMD for 10 weeks. Social scaffolding behaviors of staff as well as peer-directed behaviors of persons with PIMD were coded during videotaped observations. A significant increase of social scaffolding behaviors of staff members was observed during the intervention with a significant decrease at follow-up. Significantly, more singular and fewer multiple peer-directed behaviors of persons with PIMD were observed during the intervention. Both singular and multiple peer-directed behaviors decreased again at follow-up. A short training of staff members already positively affects their social scaffolding behaviors and increases the amount of peer-directed behaviors of persons with PIMD. However, the amount of both behaviors decreased again at follow-up. This argues to broadly apply this training in services and schools for persons with PIMD and to complement it with continuing staff coaching on this topic.
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