Inventory of assessment practices in people with profound intellectual and multiple disabilities in three European countries

BACKGROUND: Knowledge about the quality of assessment methods used in the support of people with profound intellectual and multiple disabilities (PIMD) is scarce. This study aimed to provide an overview of the assessment methods used in practice and to examine whether these instruments were studied for their psychometric properties for people with PIMD. METHOD: Professionals (N = 148) from three European countries completed a survey on assessment practices. We performed a literature search to find information about the psychometric properties of the instruments that were identified in the survey. RESULTS: Of the participants, 78.1% used assessments that were not developed for people with PIMD. Documentation on psychometric properties was found for 8 out of 116 instruments. CONCLUSIONS: Most of the instruments in use were not designed for people with PIMD, and information about their quality is lacking. Guidelines are needed regarding the use and development of assessment methods for people with PIMD

A valuable burden? The impact of children with profound intellectual and multiple disabilities on family life

Background: This study analysed parents' positive and negative appraisals of the impact of raising children with profound intellectual and multiple disabilities (PIMD) on family life. Method: Mothers (n = 52) and fathers (n = 27) of 56 children with PIMD completed a questionnaire focused on their positive and negative appraisals of the impact of childhood disability on family life. Scale means (ranging from 10 to 40) were calculated, as was the relationship between the two subscales. Results: Mothers and fathers indicated that their children affect family life both positively (M = 31.4 and 32.8, respectively) and negatively (M = 31.3 and 28.5, respectively). Only fathers showed a positive significant relationship between the positive and negative subscales. Conclusions: Parents' positive and negative appraisals co-occur. Although parents positively appraise the impact on family life, their substantial negative appraisals demand tailored support for families raising children with PIMD with a strong focus on practical support