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Background: The increased life expectancy of people with intellectual disability intensifies the need for age-specific support. Research on effects of support strategies on quality of life (QoL) of these people remains scattered., Methods: A systematic search of peer-reviewed publications since 1995 was performed, with participants having intellectual disability and being aged ≥50 years. Studies include experimental, observational and exploratory designs, analysing links between support strategies and QoL outcomes. The present authors adopted a narrative approach., Results: The present authors found 73 articles, assessed their quality, thematically categorized interventions into 12 themes, and listed them with their stated relationships to QoL., Conclusions: The studies indicated the importance of funding, provision and organization of services/personnel, education, and cooperation among different support systems. The provision of good housing or activities, support when these provisions change, provision of (mental) health care, dementia care and end-of-life care, life story work, future planning and support for (I)ADLs are crucial., (© 2018 John Wiley & Sons Ltd.)

The present study focused on the objective components of quality of life (QOL) of people with profound multiple disabilities (PMD). More specific, we aimed at evaluating different dimensions of QOL of people with PMD and investigating the association between their QOL and several personal (age, gender, intellectual capabilities, motor limitations, sensory limitations, physical and mental health status) as well as setting characteristics (location of the setting, type of setting, size of the setting, group size, group composition, staffing level and staff turnover). As a measure of the QOL of people with PMD we used the QOL-PMD, a questionnaire that we specifically developed for this purpose. To measure the personal and setting characteristics we also used a self-developed questionnaire. Forty-nine people with PMD were selected. For each of these people three informants were chosen who each filled out the QOL-PMD. To account for the clustered nature of the data, data were analysed by means of mixed models. Characteristics regarding the medical condition of the person with PMD turned out to be most strongly associated with the QOL-PMD scores. Other personal characteristics such as age, gender, motor limitations and sensory limitations did not have a significant effect on the QOL-PMD scores. With regard to the setting characteristics, location of the setting and staffing level turned out to have a significant effect on the QOL-PMD scores.

Because of a shortage of valid instruments to measure the QOL of people with profound multiple disabilities (PMD), the QOL-PMD was developed. In the present study, possibilities for item reduction as well as the psychometric properties of the questionnaire were examined. One hundred and forty-seven informants of people with PMD participated in the study. Fifty items were removed from the questionnaire on the basis of preset criteria. Internal consistency was good for the total questionnaire as well as for the subscales. Evidence of the construct validity of the questionnaire was found. Correspondence between the groups of informants was moderate. The results of this preliminary analysis of the psychometric properties of the QOL-PMD are encouraging, but further validation of the measure is warranted.

Background: The increased life expectancy of people with intellectual disability intensifies the need for age-specific support. Research on effects of support strategies on quality of life (QoL) of these people remains scattered. Methods: A systematic search of peer-reviewed publications since 1995 was performed, with participants having intellectual disability and being aged =50 years. Studies include experimental, observational and exploratory designs, analysing links between support strategies and QoL outcomes. The present authors adopted a narrative approach. Results: The present authors found 73 articles, assessed their quality, thematically categorized interventions into 12 themes, and listed them with their stated relationships to QoL. Conclusions: The studies indicated the importance of funding, provision and organization of services/personnel, education, and cooperation among different support systems. The provision of good housing or activities, support when these provisions change, provision of (mental) health care, dementia care and end-of-life care, life story work, future planning and support for (I)ADLs are crucial.

Recently, several instruments have been developed to measure the subjective component of the quality of life (QOL) of people with profound intellectual and multiple disabilities (PIMD). A next step, however, must be the further validation of these instruments. The present study aimed at evaluating the psychometric properties of one of these instruments, the Dutch version of the Mood, Interest and Pleasure Questionnaire (MIPQ). The MIPQ is a 25-item Likert scale questionnaire with two subscales (Mood and Interest and Pleasure). The MIPQ and the Aberrant Behavior Checklist were completed on 360 participants with severe or profound intellectual disabilities. About 27% of these participants were included in an examination of test-retest of and the inter-rater reliability of the MIPQ. The results suggest that the proposed two-factor structure did not show an adequate fit to our data. An exploratory factor analysis revealed a three-factor structure with positive mood, negative mood and interest as three correlated but distinct subscales. These results are in concurrence with the literature on positive emotions. High internal consistency (alpha greater than or equal to 0.80), high inter-rater (r greater than or equal to 0.69) and high test-retest reliability (r greater than or equal to 0.86) were found, which indicates the reliable use of the MIPQ in the population of people with PIMD. Strong negative correlations between the MIPQ total score and the Aberrant Behavior Checklist's "lethargy, social withdrawal" subscale provides some evidence of the construct validity of the MIPQ. However, further validation of the MIPQ including other measures of subjective well-being is warranted. (Contains 5 tables.)

Because of a shortage of valid instruments to measure the QOL of people with profound multiple disabilities (PMD), the QOL-PMD was developed. In the present study, possibilities for item reduction as well as the psychometric properties of the questionnaire were examined. One hundred and forty-seven informants of people with PMD participated in the study. Fifty items were removed from the questionnaire on the basis of preset criteria. Internal consistency was good for the total questionnaire as well as for the subscales. Evidence of the construct validity of the questionnaire was found. Correspondence between the groups of informants was moderate. The results of this preliminary analysis of the psychometric properties of the QOL-PMD are encouraging, but further validation of the measure is warranted. (Contains 6 tables.)

The present study focused on the objective components of quality of life (QOL) of people with profound multiple disabilities (PMD). More specific, we aimed at evaluating different dimensions of QOL of people with PMD and investigating the association between their QOL and several personal (age, gender, intellectual capabilities, motor limitations, sensory limitations, physical and mental health status) as well as setting characteristics (location of the setting, type of setting, size of the setting, group size, group composition, staffing level and staff turnover). As a measure of the QOL of people with PMD we used the QOL-PMD, a questionnaire that we specifically developed for this purpose. To measure the personal and setting characteristics we also used a self-developed questionnaire. Forty-nine people with PMD were selected. For each of these people three informants were chosen who each filled out the QOL-PMD. To account for the clustered nature of the data, data were analysed by means of mixed models. Characteristics regarding the medical condition of the person with PMD turned out to be most strongly associated with the QOL-PMD scores. Other personal characteristics such as age, gender, motor limitations and sensory limitations did not have a significant effect on the QOL-PMD scores. With regard to the setting characteristics, location of the setting and staffing level turned out to have a significant effect on the QOL-PMD scores. (Contains 4 tables.)

Background: The aim of this study was to explore a procedure for drafting individualised profiles of how people with profound multiple disabilities express pleasure and displeasure. Method: There were 6 participants with profound multiple disabilities. The procedure involved an observational analysis of videotaped critical incidents by a researcher and a questionnaire for parents and support workers. Results: The procedure is useful for making an individualised profile of the ways a person with profound multiple disabilities expresses his/her pleasure and displeasure. Despite the significant correlation between parents, support workers and the researcher, each has a complementary contribution to make in identifying affective expressions. People with profound multiple disabilities especially use sounds and facial expressions to express pleasure and displeasure and positive or negative moods. Conclusions: The procedure may be useful in services or schools for learning more about the affective communication of these individuals, to determine their specific interests, and to evaluate the effects of living and support characteristics on their well-being.

Background: This study considered the general validity of the basic domains of quality of life that appear in theoretical models, in relation to people with profound multiple disabilities. The authors examined how parents and direct support staff operationalized these basic domains for people with profound multiple disabilities. They investigated the effect of the support setting and age of people with profound multiple disabilities on this operationalization. Methods: A number (n = 76) of parents and direct support staff of people with profound multiple disabilities were interviewed. Transcripts were analysed in depth. Results: Results showed that the five basic domains as described within the model of Felce & Perry ["Research in Developmental Disabilities" (1995) vol. 16, pp. 51-74; "Quality of Life in Health Promotion and Rehabilitation Conceptual Approaches, Issues and Applications" (1996a) Sage Publications; "Quality of Life". "Vol. I: Conceptualization and Measurement" (1996b) American Association on Mental Retardation] were identified spontaneously by more than half of the respondents as being salient for the quality of life of people with profound multiple disabilities. When asked explicitly, this value rose to between 88.2 and 100%. The operationalization of these basic domains by parents and direct support staff differed in several aspects from operationalizations for other target groups. Neither age nor support setting turned out to have a significant effect on the operationalization. Conclusions: The results supported the multidimensionality of quality of life and the validity of the basic domains for people with profound multiple disabilities. The content of the domains of quality of life differed, however, to a considerable extent for people with profound multiple disabilities. Furthermore, these people are extremely dependent on others for the gratification of their needs and therefore for their quality of life.

Being confident as attachment figures is not self-evident for parents of children with severe or profound intellectual disabilities (SPID) given the children’s limited clear communicative responses. The current study drew upon the Attachment Strengths and Needs Interview to get an overview of factors that parents identify as influencing their parent-child attachment relationships. Inductive semantic thematic analysis was conducted on 23 semi-structured interviews (including responses of 35 parents). These were the parents of children (1–9 years) with a severe or profound intellectual (or multiple) disability. The results showed that parents mentioned a large number of inhibiting and facilitating factors related to developing attachment relationships with their children. Adopting an ecological systems perspective, these influences were organised in a micro-, meso-, macro-, exo- and chrono-level. This implies that not only factors related to the child (and his/her disability) were mentioned, but also factors related to (amongst others) the parents, the parent-child and family interactions, the broader environment and policy. Concluding, from parents’ perspectives, it seemed that the factors influencing the (development of) attachment relationships can be positive and negative, are versatile, layered in different levels, interconnected and not necessarily linked to their children’s disability. Both generic factors across parents and specific factors, related to individual families, should be taken into account to provide tailored support. [ABSTRACT FROM AUTHOR]

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]

Social interactions may positively influence developmental and quality of life outcomes. Research in persons with profound intellectual and multiple disabilities (PIMD) mostly investigated interactions with caregivers. This literature review focuses on peer interactions of persons with PIMD. A computerized literature search of three databases was conducted. Based on specific inclusion criteria eight articles were selected. In these studies, social peer interaction was not clearly operationalized. More interactions with typically developing peers were observed compared to interactions with peers with PIMD. Both groups of peers can be trained to interact or to use technological support systems during peer interactions. After training, interactions with peers increased and interactions with professionals during peer interactions decreased. Interactions with normally developing peers positively influenced specific behaviours of persons with PIMD. Not much research is available on peer interactions of persons with PIMD, especially peer interactions between persons with PIMD remain unclear. [ABSTRACT FROM AUTHOR]

Background Because of limited communicative skills, it is not self-evident to measure subjective well-being in people with profound intellectual and multiple disabilities. As a first step towards a non-interprative measure of subjective well-being, we explored how the respiratory, cardiovascular and electro dermal response systems were associated with the valence dimension of emotion. Material and Methods Three participants were presented with staff selected negative and positive stimuli. During the presentation we measured the participants’ respiration, skin conductance, heart rate and respiratory sinus arrhythmia (RSA). We used behavioural codings as an extra measure of emotional valence. Results Participants showed a shallow, fast breathing pattern, used less thoracic breathing, had a higher skin conductance and had less RSA when experiencing positive emotions then when experiencing negative emotions. Conclusion There are physiological differences between positive and negative emotions. The results also indicate that people with PIMD direct their attention away from negative stimuli. [ABSTRACT FROM AUTHOR]

Background High quality interactions are of crucial importance for quality of life of persons with profound intellectual and multiple disabilities (PIMD). This literature review describes and synthesises studies addressing the interaction between persons with PIMD and their partners. Method A computerised literature search using defined inclusion criteria yielded 15 articles. Results The literature analysis revealed four components important in interactions: sensitive responsiveness, joint attention, co-regulation, and an emotional component. The abilities and disabilities, interactive behaviours, and personality of persons with PIMD influence these interactions. Additional influences are the partners' interactive strategies, knowledge, and perceptions and the context of the interaction. Conclusions An overview model integrates the results and forms a vehicle to facilitate our understanding of interactions with persons with high support needs. Methodological analyses of the studies show lacunae in current research. This review offers a starting point to guide future research and intervention. [ABSTRACT FROM AUTHOR]

Background This study provides an overview of empirical research on the effectiveness of quality-enhancing interventions for people with profound intellectual and multiple disabilities (PIMD). Method Through computerised searches of the PsycINFO and ERIC databases, and using several search criteria specifically relating to the target group and to the subject of this review, 16 studies were identified. Results The interventions described are targeted at the physical and material well-being, emotional well-being, social interactions, choices, and personal development of individuals with PIMD, but do not address community participation and rights. The majority of the studies report positive effects of the interventions on staff and/or client behaviour. However these effects should be interpreted with caution because of methodological and other considerations. Conclusions Current research gives only limited insight into the effectiveness of quality-enhancing interventions for people with PIMD. To foster evidence-based practice, further studies of larger groups and with more robust designs are warranted. The potential differential effects associated with client characteristics and the context of the implementation should also be considered. [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]

Background The goal of this study was to adapt a narrative reminiscence program for the special needs of ageing people with mild/moderate intellectual disabilities. Research has shown that stimulating reminiscence in the elderly can be a meaningful activity, and holds promise for positive effects on well‐being. Method In the first stage (10 weeks), the program was developed with 1 group. Evaluation and adjustments to the program were made based on video recordings, the researcher's log, and feedback from participants and support workers. Formative evaluation was performed by means of a within‐group analysis. In the second stage (3 weeks), the program was introduced to 6 other groups. Interviews with professional support workers were subjected to a cross‐case analysis. Results The final program consists of 13 sessions covering different reminiscence themes. The success of reminiscence group work relies on (a) well‐prepared and structured sessions, (b) adequate use of visual triggers, and (c) facilitating, coaching and moderating. Conclusion The program was perceived as a valuable and meaningful activity by all participants. Although reminiscence group work is not therapeutic in nature, it may have therapeutic use for ageing people with intellectual disabilities, and in this sense is worth evaluating. [ABSTRACT FROM AUTHOR]

Background The aim of this study was to explore a procedure for drafting individualised profiles of how people with profound multiple disabilities express pleasure and displeasure. Method There were 6 participants with profound multiple disabilities. The procedure involved an observational analysis of videotaped critical incidents by a researcher and a questionnaire for parents and support workers. Results The procedure is useful for making an individualised profile of the ways a person with profound multiple disabilities expresses his/her pleasure and displeasure. Despite the significant correlation between parents, support workers and the researcher, each has a complementary contribution to make in identifying affective expressions. People with profound multiple disabilities especially use sounds and facial expressions to express pleasure and displeasure and positive or negative moods. Conclusions The procedure may be useful in services or schools for learning more about the affective communication of these individuals, to determine their specific interests, and to evaluate the effects of living and support characteristics on their wellbeing. [ABSTRACT FROM AUTHOR]

This study considered the general validity of the basic domains of quality of life that appear in theoretical models, in relation to people with profound multiple disabilities. The authors examined how parents and direct support staff operationalized these basic domains for people with profound multiple disabilities. They investigated the effect of the support setting and age of people with profound multiple disabilities on this operationalization.A number (n = 76) of parents and direct support staff of people with profound multiple disabilities were interviewed. Transcripts were analysed in depth.Results showed that the five basic domains as described within the model of Felce&Perry [Research in Developmental Disabilities (1995) vol. 16, pp. 51–74;Quality of Life in Health Promotion and Rehabilitation Conceptual Approaches, Issues and Applications(1996a) Sage Publications;Quality of Life.Vol. I:Conceptualization and Measurement(1996b) American Association on Mental Retardation] were identified spontaneously by more than half of the respondents as being salient for the quality of life of people with profound multiple disabilities. When asked explicitly, this value rose to between 88.2 and 100%. The operationalization of these basic domains by parents and direct support staff differed in several aspects from operationalizations for other target groups. Neither age nor support setting turned out to have a significant effect on the operationalization.The results supported the multidimensionality of quality of life and the validity of the basic domains for people with profound multiple disabilities. The content of the domains of quality of life differed, however, to a considerable extent for people with profound multiple disabilities. Furthermore, these people are extremely dependent on others for the gratification of their needs and therefore for their quality of life. [ABSTRACT FROM AUTHOR]

• Taking care for children with severe disabilities puts high demands on parents. • Outsourcing care to residential care facilities is emotionally complex for parents. • The decision to outsource is a process, marked by fields of tension and uncertainty. • Parents fear to be replaced as attachment figures, while also cherishing hope and trust. • Support to parents should be sensitive to and normalize these complex emotions. Caring for children with severe to profound intellectual disabilities (SPID) can be an overwhelming burden for parents, leading them to consider outsourcing some of the care to residential care facilities. However, this decision is complex and emotionally challenging for both the parents and the child. This Interpretative Phenomenological Analysis study aimed to explore the emotional experiences of parents when making the decision to outsource care for their children with SPID to residential care facilities. In-depth interviews were conducted with seven mothers of children aged between 8 and 18 who were actively considering a transition to residential care. The study revealed that this decision is a complex and ambiguous process, accompanied by layers of insecurities and fields of tension, against a backdrop of high care burden and (fragile) resilience. It requires parents to balance their child's and their own needs, rational and emotional arguments, and complex emotions, with the ultimate goal of finding a sustainable care solution in the long term while still fulfilling their role as attachment figures. The findings of this study are critical in supporting families who are facing such an important and emotional transition in their lives. [ABSTRACT FROM AUTHOR]

Abstract: Recently, several instruments have been developed to measure the subjective component of the quality of life (QOL) of people with profound intellectual and multiple disabilities (PIMD). A next step, however, must be the further validation of these instruments. The present study aimed at evaluating the psychometric properties of one of these instruments, the Dutch version of the Mood, Interest and Pleasure Questionnaire (MIPQ). The MIPQ is a 25-item Likert scale questionnaire with two subscales (Mood and Interest and Pleasure). The MIPQ and the Aberrant Behavior Checklist were completed on 360 participants with severe or profound intellectual disabilities. About 27% of these participants were included in an examination of test–retest of and the inter-rater reliability of the MIPQ. The results suggest that the proposed two-factor structure did not show an adequate fit to our data. An exploratory factor analysis revealed a three-factor structure with positive mood, negative mood and interest as three correlated but distinct subscales. These results are in concurrence with the literature on positive emotions. High internal consistency (α ≥.80), high inter-rater (r ≥.69) and high test–retest reliability (r ≥.86) were found, which indicates the reliable use of the MIPQ in the population of people with PIMD. Strong negative correlations between the MIPQ total score and the Aberant Behavior Checklist''s ‘lethargy, social withdrawal’ subscale provides some evidence of the construct validity of the MIPQ. However, further validation of the MIPQ including other measures of subjective well-being is warranted. [Copyright &y& Elsevier]

Abstract: Background: Because of the problems measuring subjective well-being in people with severe and profound intellectual disabilities, there are no studies to date which explore the factors contributing to the subjective well-being in these groups. We wanted to explore the client and service characteristics contributing to the subjective well-being of persons with severe and profound intellectual disabilities, as measured by the MIPQ (). Materials and methods: The MIPQ was completed for 360 persons with severe or profound intellectual disabilities by a member of the direct support staff. They also provided us with information on client, service and informant characteristics. Results: We found that the subjective well-being of persons with profound intellectual disabilities was lower than the subjective well-being of people with mild, moderate or severe intellectual disabilities or people without disabilities. Client and informant characteristics but no service characteristics were found to have an influence on the subjective well-being of people with severe and profound intellectual disabilities. Conclusion: As it is important for policy making to identify residence service and staff factors related to subjective well-being of persons with severe and profound intellectual disabilities, further research should try to identify these factors, taking in account the client characteristics that are found to be related to subjective well-being in this study. [ABSTRACT FROM AUTHOR]