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Although family quality of life (FQOL) and the family‐centered approach (FCA) are often conceptually linked, empirical research on their relation is scarce. This study investigated the relation between the FCA and FQOL in families with a child (0–18 years) with an intellectual disability receiving home‐based support (HBS) in Flanders. The impact of the parental work situation and the child's support needs on FQOL (domains) were studied too. Through the Helpgiving Practices Scale (HPS) and the Enabling Practices Scale (EPS), parents of participating families (n = 58) reported about the FCA in their families' HBS. Using the Beach Center FQOL Scale, mainly mothers reported about their families' quality of life. The relation between the realization of the FCA, parental employment, and the child's support needs on the one hand, and FQOL on the other hand was studied via multiple regression analyses. Additionally, the best predicting model was determined for FQOL (domains). Globally, a positive relation between FQOL and the FCA was found. Dependent on the FQOL domain, a different relation was identified with the family‐centered components. Components of the EPS (i.e., comfort and parental autonomy) were better predictors than those of the HPS. The parental work situation was a significant predictor for satisfaction regarding total FQOL (with and without disability‐related support), family interactions, and parenting. The child's support needs were a significant predictor for emotional well‐being. As the first of its kind, this study investigated the relation between FQOL and the FCA in detail. More, in depth, and especially long‐term research is, however needed to fully understand the relation between FQOL and its contributors. [ABSTRACT FROM AUTHOR]

Despite the high prevalence of visual impairments in persons with severe or profound intellectual disability (ID), often a formal diagnosis is unavailable. Direct support workers and staff members have access to the information of the visual functioning through the personal files and build knowledge based on their own experiences. In order to provide individualized and high quality support in daily life, the accuracy and availability of this information of the visual functioning is essential. This study investigates the knowledge of direct support workers and staff members on the visual functioning of their clients and the written information available in the personal files. It is investigated to what extent they do agree on their knowledge and how certain direct support workers and staff members are about their knowledge on the visual functioning. Additionally is investigated to what extent the information available in support files is based on formal assessment. For 104 clients with severe or profound ID a direct support worker and a staff member filled in a questionnaire about their visual functioning. Next, the personal files were analyzed. Direct support workers and staff members respond significantly differently on the questions on the impaired visual functions. Direct support workers rate the certainty level of their knowledge on their clients' visual functions higher than staff members. The personal files lack information on the visual functioning. If information is available, it is mostly based on subjective impressions. The knowledge of direct support workers and staff members and the information available in the personal files provide no comprehensive picture of the visual functioning of the persons with severe or profound ID. [ABSTRACT FROM AUTHOR]

Abstract: 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′‐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. [ABSTRACT FROM AUTHOR]

Multisensory storytelling ( MSST) is a storytelling method developed for people with profound intellectual and multiple disabilities ( PIMD). The developers of MSST have established specific guidelines aimed at increasing the listener's attention. Whether, and to what extent, these guidelines indeed increase the listener' attentiveness is unknown. This study analyzed the relationship between the effects of these guidelines and the attentiveness of listeners with PIMD. Some 45 storytellers created an MSST book tailored to a person with PIMD. The book was read 10 times, and video recordings were made of the first, fifth, and tenth reading sessions. For each session, the percentage of attention paid to the storyteller and to the book was scored using an interval method. The relationship between adherence to the guidelines (repetition, use of original text, offering stimuli actively, and use of neutral background) and attentiveness of the person with PIMD was then analyzed. During storytelling, the listeners were attentive to MSST for an average of 69% of the time. The attention increased between the first and fifth reading sessions, and then dropped between the fifth and tenth sessions. Part of the guidelines (repetition, actively offering the stimuli and duration of the story) were positively related to the amount of the listeners' attention; for other parts of the guidelines (using original text and using neutral background), no significant correlations were found. The results of this study can help with developing clearer instructions to new storytellers. To optimize the attentiveness of a person with PIMD to an MSST story, the authors recommend that the storyteller takes ample time to read the book and provides the listener with active access to the stimuli. [ABSTRACT FROM AUTHOR]

The authors attempted to find out to what extent and in which ways, in Belgium, have Flemish services for people with intellectual disability adapted to the specific needs of aging people. A study was undertaken and a questionnaire was developed to address the following research topics: (1) accommodations and personnel, (2) staff working methods, and (3) staff views and attitudes. The questionnaire was completed by 66 coordinating staff members in as many facilities. At the time of our study, these services supported 310 (27%) persons with Down syndrome age 40 years and older and 833 (73%) persons with intellectual disability (other than Down syndrome) age 55 years and older. Adaptations in accommodation and personnel management were obvious in the majority of the participating services. The working methods reflected a person-centered philosophy, regardless of the age-factor. An exploratory factor analysis revealed three different staff approaches: an activating/socializing, disengaging, and methodical. Participation in activities and involvement in social relations have a prominent place in the staff's views. In general, the authors found that about two-thirds of the services have started to modify their accommodation and personnel to the needs of aging people with intellectual disability. The authors note also that the results suggest there is still a lot of work to do in improving staff training, introducing specific working methods, and in altering stereotypical staff attitudes to assure a good “aging in place.” [ABSTRACT FROM AUTHOR]

The authors examined which support characteristics are associated with the quality of life (QOL) of people with profound intellectual and multiple disabilities (PIMD). The authors invited parents and direct support staff of people with PIMD to adopt the perspective of their child or the person with PIMD for whom they care. Some 76 parents and direct support staff of people with PIMD were interviewed, and to obtain data, transcripts were analyzed in-depth. The respondents mentioned: (1) characteristics with regard to the structure of the setting (physical environment, staff ratio, staff turnover, group size, and group composition); (2) characteristics with regard to the internal organization of the support (partnership, teamwork, interdisciplinarity, and support planning); and (3) characteristics with regard to the support staff (experience, sensitive responsiveness, commitment and motivation, physical strength, knowledge and skills, and self-reflection). The respondents considered structural as well as operating features of the support setting to be important for the QOL of people with PIMD. The authors conclude that their main emphasis, however, was on the central role of direct support staff in supporting people with PIMD. [ABSTRACT FROM AUTHOR]