Family-based social capital of emerging adults with and without mild intellectual disability.

BACKGROUND: Family is recognised as an important context for the self-development of young adults in emerging adulthood, although very little research has addressed the perspective of young people with intellectual disability about their families by using self-report. This study examined how emerging adults with mild intellectual disability define their family support networks, compared with definitions of students without intellectual disability, within a social capital theoretical framework. METHODS: Fifty-three participants with mild intellectual disability and 53 students without intellectual disability were interviewed individually using the Family Network Method - Intellectual Disability (FNM-ID). Data from the FNM-ID relate to key social network measures on how individuals define their family groups, and how they perceive existing supportive relationships within their families. Participants with mild intellectual disability and students were compared on the FNM-ID social network measures. RESULTS: Participants with mild intellectual disability reported fewer family members who they considered significant to them than students without intellectual disability. They were less likely to include peers (i.e. friends and partners) and siblings in their significant family networks, had fewer relationships with family members in which they received or gave support, had fewer reciprocal support relationships and had a less central position in their family network. DISCUSSION: The family-based social capital of emerging adults with mild intellectual disability differed from that of students without intellectual disability. They may remain more dependent on their natural family for emotional support as their supportive networks have not necessarily made the transition to networks with emotionally close peer relationships.

Evaluation of a Social Network Intervention for People with Mild to Borderline Intellectual Disabilities.

BACKGROUND: Little is known about the effectiveness of interventions aimed at enhancing the social networks of people with intellectual disabilities. This study explores the results of such an intervention. How did the clients with mild to borderline intellectual disabilities and their support workers evaluate the intervention? What did they learn from it? Were there any changes in network characteristics, satisfaction and wishes in relation to networks, participation, loneliness, self-determination or self-esteem? METHOD: The evaluation of the intervention was explored from several perspectives (i.e. five clients, their six support workers and three trainers), using mixed methods (i.e. interviews and questionnaires). RESULTS: The intervention was positively evaluated by both clients and support workers. Moreover, the analysis revealed the vulnerability of clients and their networks but also the benefits experienced from the intervention, such as decreased loneliness, enhanced social networks, increased awareness, competence, autonomy and increased participation. CONCLUSION: The indicative level of evidence for the effectiveness of this intervention justifies a larger series of case studies or a larger control trial study.

Social networks of people with mild intellectual disabilities: characteristics, satisfaction, wishes and quality of life.

BACKGROUND: A supportive social network is crucial for facilitating social inclusion, which can, in turn, contribute to the quality of life (QOL) for people with intellectual disabilities (ID). In this study, we investigate how people with mild ID perceive their social networks and which network characteristics relate to satisfaction with the network and perceived QOL. METHOD: Data were gathered from 33 young adults with a mild to borderline ID using structured questionnaires: the MSNA to map the social network, the IDQOL-16 to assess QOL, and a questionnaire to determine satisfaction and wishes with regard to the social network. RESULTS: The majority of the participants (73.1%) were satisfied with their social networks. Improvement in the area of strengthening existing ties (e.g. more frequent contact, better contact) was desired as opposed to expansion of the network. Affection--especially towards family and professionals--was most strongly related to perceived QOL. It appears to be essential that relatives live in the same town, can frequently meet up and provide both emotional and practical support. CONCLUSIONS: The significance of family and the importance of high-quality interpersonal relationships between professional and client in the lives of young adults with ID cannot be overestimated. Although measures of satisfaction and wishes can have limitations, in actual practice it is considered useful to assess the opinions of clients with respect to their social networks. Interventions can then be tailored to the needs and wishes of the persons themselves.

Do social networks differ? Comparison of the social networks of people with intellectual disabilities, people with autism spectrum disorders and other people living in the community.

The aim of this study was to determine the similarities and differences in social network characteristics, satisfaction and wishes with respect to the social network between people with mild or borderline intellectual disabilities (ID), people with autism spectrum disorders (ASD) and a reference group. Data were gathered from 105 young adults living independently in the community. The social networks of people with ID and ASD are more restricted than those of the reference group. Compared with the other groups, people with ASD are less often satisfied with their networks. Each group has its own characteristics, issues and wishes with respect to their social network. Practical measures to enable professionals to adapt to these issues are discussed.

The human degree of care. Professional loving care for people with a mild intellectual disability: an explorative study.

BACKGROUND: Research has shown that care staff are not always able to offer quality care. Commercialisation and market forces within the care sector are often pointed to as an explanation for this shortcoming. In the present study, insight is gained into the possible connections between the commercialisation of care, on the one hand, and the shrinkage of possibilities and motivation to offer professional loving care, on the other hand, from the perspective of care staff working with people with mild intellectual disabilities. METHOD: Semi-structured qualitative interviews were conducted with 28 care staff working with people with mild intellectual disabilities. Scientific research methods were combined with normative ethical reflection to examine the internal morals of the care staff. RESULTS: According to participating care staff, an affiliation with and recognition of the client form the basis for professional loving care. Care staff recognise that their profession is increasingly being built upon manageability and accountability, and this is making their jobs more difficult. CONCLUSION: We conclude that care staff perceive the precedence given to the smooth running of production processes over investment in direct contact with clients to be a real threat to the quality of care. Concerns about declining motivation and loss of work satisfaction as a result of the commercialisation of care are only partly acknowledged by care staff. While shrinkage of space for professional loving care is recognised, one can hardly speak of declining motivation.

The analysis of challenging relations: influences on interactive behaviour of staff towards clients with intellectual disabilities.

BACKGROUND: Relationships between support staff and clients with intellectual disability (ID) are important for quality of care, especially when dealing with challenging behaviour. Building upon an interpersonal model, this study investigates the influence of client challenging behaviour, staff attitude and staff emotional intelligence on interactive behaviour of one of these relationship partners, being support staff. METHOD: A total of 158 support staff members completed a questionnaire on staff interactive behaviour for 158 clients with ID and challenging behaviour, as well as two questionnaires on staff interpersonal attitude and emotional intelligence. RESULTS: Confronted with challenging behaviour as opposed to no challenging behaviour, staff reported less friendly, more assertive control and less support-seeking interpersonal behaviour. Also, staff used more proactive thinking and more self-reflection in dealing with challenging behaviour. Staff interpersonal attitude in general, mainly a harsh-dominant-resentful attitude, had a significant influence on most staff interactive behaviours towards an individual client with challenging behaviour. The influence of staff emotional intelligence, specifically intrapersonal abilities, on staff interactive behaviour towards an individual client with challenging behaviour was somewhat limited. CONCLUSIONS: This research supports the necessity for training staff in general interpersonal attitudes towards clients as well as training in intrapersonal emotional intelligence, when confronted with challenging behaviour. Future research should focus more on the bidirectional dynamics of staff and client interactions.

Comparison of intellectually disabled offenders with a combined history of sexual offenses and other offenses versus intellectually disabled offenders without a history of sexual offenses on dynamic client and environmental factors.

Sexually offensive behavior is prevalent among individuals with intellectual disabilities (ID) and many sex offenders also commit other offenses such as vandalism or assault. We examined the differences between sex offenders with ID and a history of combined sex and other types of offenses (mixed sex offenders) versus offenders with no history of sexual offenses (non-sex offenders). Dynamic client and environmental factors were measured using the Adult Behaviour Checklist (ABCL) and the Risk Inventarization Scale on Sexually Offensive Behavior of Clients with intellectual disabilities (RISC-V). Item, subscale, and total scores were then compared for the two groups. Most of the comparisons did not reveal significant differences between the two groups. The findings call for a general theory of offending behavior to explain the absence of differences between the mixed sex offenders and non-sex offenders with ID.

Structural and functional characteristics of the social networks of people with mild intellectual disabilities.

In the research on people with intellectual disabilities and their social networks, the functional characteristics of their networks have been examined less often than the structural characteristics. Research on the structural characteristics of their networks is also usually restricted to the size and composition of the networks, moreover, with little attention to such characteristics as the variety, accessibility, length and origin of the relationships or the frequency and initiation of the contacts. A comprehensive examination of both the structural and functional characteristics of the social networks of 33 people with intellectual disabilities was therefore undertaken. The social networks of the individuals who all lived in the community varied from 4 to 28 members (mean 14.21); 42.65% of the network members were family members, 32.84% acquaintances and 24.51% professionals. Remarkable is the high frequency of contact with network members; the finding that the participants considered themselves to be the main initiator of contact more often than the other members of their networks as the main initiators; the high scores assigned to neighbours and professionals for functional characteristics; and the relatively low scores assigned to network members for the connection characteristic of the social networks. The important role of professionals in the social networks of people with mild intellectual disabilities and practical implications to facilitate their social inclusion are discussed.

The rehabilitation process of children with motor disabilities in the Dutch therapeutic toddler class: main phases and parent involvement.

This study describes the implementation of the main phases of the rehabilitation process of children with motor disabilities who visit Dutch therapeutic toddler classes. Parent involvement, as well as parents' and professionals' satisfaction were also investigated. It was found that in about half of the cases there was no initial assessment of the child, nor a jointly formulated intervention plan. When there was an assessment, several quality standards were not met. In most cases parents were involved in the evaluation phase of the rehabilitation process. However, the proportion of parents involved in the phases of assessment and intervention planning were much lower. The results are discussed within the context of current developments in The Netherlands with respect to team communication and recent research findings.

Service needs of parents with motor or multiply disabled children in Dutch therapeutic toddler classes.

OBJECTIVE: To determine parents' service needs at the start of therapeutic toddler class treatment, to analyse determinants and to investigate received help after a period of 10 months. SUBJECTS: Parents with motor or multiply disabled children in therapeutic toddler classes. SETTING: Sixteen out of 17 Dutch rehabilitation centres. DESIGN: A sample of 84 parents, stratified according to toddler class size. MAIN OUTCOME MEASURES: A questionnaire of 33 items, divided into five categories, was designed to assess parents' needs and to evaluate the amount of received help. Several measures were used to assess child, parent and family characteristics. RESULTS: Based on factor analysis, five need subscales were distinguished which only partially corresponded to the initial categories. The initial category concerning needs for help in family functioning did not come out as a factor. Needs expressed most frequently belonged to the three subscales of needs for information concerning the child. The average level of needs generally did not differ for mothers and fathers across the subscales. However, we found large variation in needs for both mothers and fathers on each subscale. The most important, positively correlated determinant of parents' needs was social isolation of the family. After 10 months a considerable level of unmet needs was found. CONCLUSIONS: A systematic and periodic assessment of individual needs of parents as well as the services offered is recommended. Professionals of the therapeutic toddler classes should especially focus on providing parents with information on their child's disability and therapy, community services and parenting.

Perceived changes in well-being of parents with a child in a therapeutic toddler class.

A 15-item questionnaire was developed to measure the perceived changes in well-being of parents with a motor disabled child during treatment in a Dutch therapeutic toddler class. Eighty-one mothers and 67 fathers completed the questionnaire. Factor analyses showed that two dimensions had to be distinguished in the questionnaire data. Parents perceived a positive change in well-being 10 months after their child started visiting the therapeutic toddler class. Mothers as well as fathers said to have gained more insight in their child's abilities and to feel less that they are all on their own. The impact of the toddler class program on well-being was greater for mothers than for fathers, especially with respect to feeling fit, planning social activities, and having time for their own relaxation. Fathers, however, gained more insight in the abilities of the child than mothers did after ten months. Regression analyses showed some family, parent, and child characteristics to be predictive of mothers' and fathers' perceived change in well-being. Implications of these findings for future research are discussed.