Showing papers in "Journal of Applied Research in Intellectual Disabilities in 2007"
TL;DR: The mothers of children with autism presented higher stress levels on seven of the 15 scales of the QRS, and the results are discussed in the context of the unsatisfactory care system for children with Autism in Poland.
Abstract: Background The purpose of the present study was to determine the stress in mothers whose children have autism and to compare it with the stress in mothers whose children have Down's syndrome.
Method Fifty mothers whose children had autism (n = 25) or Down's syndrome (n = 25) completed the Questionnaire on Resources and Stress (QRS) and answered some demographic questions.
Results The mothers of children with autism presented higher stress levels on seven of the 15 scales of the QRS.
Conclusion The results are discussed in the context of the unsatisfactory care system for children with autism in Poland.
155 citations
TL;DR: Meta-analytic comparisons suggested that the levels of burnout are somewhat lowered in this population compared with normative samples and that there appeared to be a trend of burn out rates decreasing steadily over the past 20 years.
Abstract: Background Burnout has been highlighted as a significant problem for workers in the intellectual disabilities field. A growing number of studies have investigated the levels of burnout and its correlates amongst this population, although they have often reported somewhat contradictory findings. Materials and methods The present paper sought to systematically review the literature describing the levels and correlates of burnout amongst direct care workers of adults with intellectual disabilities. Results Meta-analytic comparisons suggested that the levels of burnout are somewhat lowered in this population compared with normative samples and that there appeared to be a trend of burnout rates decreasing steadily over the past 20 years. Discussion Burnout appears to represent a useful construct for measuring the distress of workers supporting adults with intellectual disabilities. Gaps and inconsistencies were highlighted in the research literature and future research directions discussed.
154 citations
TL;DR: While results for QOL, well-being and autonomy were largely positive, there was a lack of perceived social acceptance and implications for the socio-emotional support required by some individuals in employment are discussed.
Abstract: Background Work is an aspiration for many people with intellectual disability and is regarded as a vital goal by policy-makers in pursuit of social inclusion. The aim of this study was to consider the impact of supported employment on the socio-emotional well-being of people with intellectual disabilities.
Method A systematic search was conducted. The review included case-controlled and longitudinal studies measuring outcomes for: (1) quality of life (QOL), (2) social life and (3) autonomy.
Results While results for QOL, well-being and autonomy were largely positive, there was a lack of perceived social acceptance. The findings are interpreted in the light of methodological strengths and weaknesses.
Conclusions Implications for the socio-emotional support required by some individuals in employment, and directions for future research are discussed.
128 citations
TL;DR: Although there has been a steady increase in published materials in recent years, research data around the palliative care needs of people with intellectual disabilities remain scarce and there are significant gaps in current knowledge.
Abstract: Background As patterns of morbidity and mortality are changing, more people with intellectual disabilities develop cancer or other life-limiting illness. This paper reviews the literature around the need of people with intellectual disabilities for palliative care.
Methods A range of databases and the World Wide Web were searched for relevant papers, book chapters, training and information materials, unpublished materials and policy guidelines. Publications from 1995 to 2005 are included.
Findings Although there has been a steady increase in published materials in recent years, research data around the palliative care needs of people with intellectual disabilities remain scarce. Case reports are the most prevalent method of exploring pertinent issues. The paper presents an overview of issues identified in the literature, with a particular focus on pain and symptom assessment, ethical issues, service planning and training needs.
Conclusion There are significant gaps in current knowledge. The authors make recommendations for future areas of research and development.
113 citations
TL;DR: The reticence of staff to engage with these issues needs addressing especially in the light of the emerging human rights of people with intellectual disabilities to develop sexual and intimate relationships.
Abstract: Background In the UK and elsewhere, there is a growing policy and legislative imperative to ensure that people with intellectual disabilities are supported to develop relationships, including sexual ones. However, gay, lesbian and bisexual people with intellectual disabilities may have additional needs or face particular barriers in this area of their lives. They may require particular kinds of support from the staff who work with them. But how able, or willing, are staff in services to address these issues?
Method As part of empirical, qualitative research, the authors carried out interviews with 71 staff in 20 intellectual disability services across the UK about their views and experiences of working with people with intellectual disabilities who were, or may have been, gay, lesbian or bisexual.
Results The majority of staff interviewed said that they did not feel confident working in this area. A number of barriers to doing the work were identified including a lack of policy and training as well as the prejudice of staff and parents/carers.
Conclusions The reticence of staff to engage with these issues needs addressing especially in the light of the emerging human rights of people with intellectual disabilities to develop sexual and intimate relationships.
109 citations
TL;DR: The stress experience of mothers of children with autism is related strongly to a global sense of coherence as well as more specific parenting attitudes, and two proximal factors in parenting, parental confidence and acceptance of the child, were found to partially mediate SOC and stress.
Abstract: Background The moderating and mediating relationships among sense of coherence, parental attitudes and parenting stress for caregiving parents of children with autism were tested.
Materials and Methods One hundred and fifty-seven mothers of children with autism recruited from representative community service centres in Hong Kong completed the Chinese versions of Sense of Coherence Scale (SOC), Confidence and Acceptance subscales of Parent-Attitude Survey Scales and Parenting Stress Index Short Form.
Results Accounting for mothers’ demographic background, SOC showed a moderating effect with child's symptoms and parenting stress. Mothers with a strong SOC perceived lower stress than their counterparts even when their children presented with more severe autistic symptoms. Two proximal factors in parenting, parental confidence and acceptance of the child, were found to partially mediate SOC and stress.
Conclusions The stress experience of mothers of children with autism is related strongly to a global sense of coherence as well as more specific parenting attitudes.
91 citations
TL;DR: The MOAS provides a reliable measure of verbal and physical aggression among people with ID who reside in community settings and is suitable for use in studies evaluating the effectiveness of interventions aimed at reducing aggressive challenging behaviour in this group.
Abstract: Background Reliable measures of aggressive challenging behaviour are required if interventions aimed at reducing this behaviour among people with intellectual disability (ID) are to be formally evaluated. The present authors examined the reliability of the Modified Overt Aggression Scale (MOAS), an instrument not yet formally tested in those with ID, in a sample of people who participated in a randomized trial of neuroleptic medication for aggressive challenging behaviour.
Method Sixty interviews using the MOAS were carried out by two interviewers 2–5 days apart with 23 carers of 14 people who had shown aggressive challenging behaviour. Level of agreement between these two ratings was examined for four subscales of aggression and for total MOAS score.
Results The level of agreement between the raters was high for verbal aggression (intraclass correlation coefficient, ICC = 0.90), physical aggression against others (ICC = 0.90) and for total MOAS score (ICC = 0.93). Levels of agreement on the other two subscales were lower but still in the good/moderate range.
Conclusion The MOAS provides a reliable measure of verbal and physical aggression among people with ID who reside in community settings and is suitable for use in studies evaluating the effectiveness of interventions aimed at reducing aggressive challenging behaviour in this group.
91 citations
TL;DR: Type of accommodation/support, and the number of preceding life events were predictive of incidents of mental ill-health, but age, gender, living in areas of greatest deprivation, and having special communication needs were not.
Abstract: Keywords:
diagnosis and classification;epidemiology;mental disorders;mental ill-health;mental retardation;profound intellectual disabilities
Background There are no previous studies of the prevalence and incidence of mental ill-health in adults with profound intellectual disabilities.
Method In this population-based prospective cohort study, adults with profound intellectual disabilities underwent psychiatric assessment (n = 184), with further assessment after 2 years (n = 131).
Results Point prevalence of mental ill-health was 52.2% by clinical, 45.1% by Diagnostic Criteria for Psychiatric Disorders for use with Adults with Learning Disabilities (DC-LD), 10.9% by the ICD-10 Classification of Mental and Behavioural Disorders Diagnostic Criteria for Research (1993) (DCR-ICD-10) and 11.4% by Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (2004) (DSM-IV-TR) criteria. The highest 2-year incidence rates were for affective disorders (6.1%) and problem behaviours (6.1%). Type of accommodation/support, and the number of preceding life events were predictive of incidents of mental ill-health, but age, gender, living in areas of greatest deprivation, and having special communication needs were not.
Conclusions Mental ill-health is more commonly experienced by adults with profound intellectual disabilities than the general population, or other adults with intellectual disabilities, warranting proactive supports/interventions. Predictive factors differ, compared with the general population.
85 citations
TL;DR: Results suggest that particular attention should be paid to the training of those who hold managerial posts in Italian residential services, especially the staff of the outpatient treatment services who revealed the most liberal and positive attitudes towards the sexuality of individuals with intellectual disability.
Abstract: Background The sexual lives of people with intellectual disability is made complex by the involvement and influence of social service providers, whose beliefs and values have a great impact on the support they provide. We hypothesized that social service providers’ role, educational level and service in which they worked could affect attitudes towards the sexual behaviour of individuals with intellectual disability.
Materials and methods The current study describes attitudes of social service providers towards the sexuality of individuals with disability measured by 20 items of Sexuality and Mental Retardation Attitudes Inventory (SMRAI). This instrument was devised by Brantlinger [Mental Retardation (1983) Vol. 21, pp. 17–22] to assess the attitudes of the staff employed by organizations that supplied services to individuals with intellectual disability. Specifically, analysis of variance (type of service × professional role × education) was performed on participants’ scores.
Results Results suggested that the social service providers participating in this research study tended to have moderately liberal attitudes. Educational level and role carried out did not produce differences in their attitudes. A significant difference emerged between those who operated in different services. It was especially the staff of the outpatient treatment services who revealed the most liberal and positive attitudes towards the sexuality of individuals with intellectual disability.
Conclusions The data reported in the present study seem to underline some differences between the data collected from the Italian and the Anglo-Saxon social service providers. Failure to record influences associated with the role carried out and previous training could be related to the different contextual differences. Results suggest that particular attention should be paid to the training of those who hold managerial posts in Italian residential services.
82 citations
TL;DR: The training had a positive effect on knowledge and perceived confidence but little enduring effect on attributions or emotional responses, which significantly increased both for registered and non-registered staff.
Abstract: Background Positive behavioural support is increasingly viewed as the preferred service approach for people who challenge, but skills are insufficiently widespread. The need for effective staff training has been highlighted as a key factor in high quality service provision, with investigators recommending a multidimensional approach to increase effectiveness and produce changes in work performance.
Method Attitudes and knowledge of registered (qualified nurses) and non-registered (unqualified nursing assistants) staff in specialist health care services were assessed via self-completion questionnaires before and after the delivery of a newly accredited taught course in PBS and at a 1-year follow-up.
Results Significant increases in knowledge were evident immediately after the training for both groups, with further increases evident over time for the non-registered staff who completed the qualification. Initial changes in attributions immediately after training reverted to baseline levels over time. Enduring change occurred in perceived confidence, which significantly increased both for registered and non-registered staff.
Conclusions The training had a positive effect on knowledge and perceived confidence but little enduring effect on attributions or emotional responses. The importance of training conducted in conjunction with allied changes in organizational systems to ensure ongoing management attention is discussed.
80 citations
TL;DR: In this article, the effects of three different coping strategies (i.e., problem-focused, emotion-focused and relationship-focused coping) on both positive and negative caregiving perceptions were tested.
Abstract: Background In this study, we tested the effects of three different coping strategies (i.e. problem-focused, emotion-focused and relationship-focused coping) on both positive and negative caregiving perceptions.
Materials and Methods Two hundred and twelve Chinese mothers of children with intellectual disability from a major non-governmental organization were recruited across various districts in Hong Kong. Chinese versions of the Daily Caregiving Stress Scale, Modified Family Support Scale, COPE Inventory, Relationship-Focused Coping Scale, Caregiver Burden Inventory, and subscales of the Kansas Inventory of Parental Perceptions were completed.
Results: Findings of the hierarchical regression analyses indicated that whereas problem-focused and emotion-focused coping was differentially related to positive and negative perceptions, respectively, relationship-focused coping was significantly related to both types of perceptions. Results of the relationship between positive and negative perceptions showed preliminary support for their orthogonality.
Conclusions: Relationship-focused coping was found to be more suitable for understanding caregiver perceptions within collectivistic cultures. Implications for professional services were discussed.
TL;DR: The implementation and evaluation of Active Support in Australia is reported, the first such formal evaluation outside the UK, and most of the findings were consistent with earlier UK studies.
Abstract: Background The implementation and evaluation of Active Support in Australia is reported, the first such formal evaluation outside the UK. Method Residents and staff of five group homes participated. Active Support was introduced by training staff in one home at a time. Effectiveness was assessed using direct observation of resident engagement in activity and of staff help, as well as written assessments of resident outcomes. Results Staff help and resident engagement increased in four of five group homes. There was significantly greater participation in a wider variety of domestic activities, as well as more frequent and varied community participation. Change in resident engagement was positively related to change in staff help, but not related to residents' level of adaptive behaviour. Conclusions Most of our findings were consistent with earlier UK studies. There was evidence of the successful transfer of Active Support training skills to an Australian training team. Nonsignificant trends towards reduced depression and increased adaptive behaviour warrant further investigation.
TL;DR: Documenting the range of mental health services available to individuals with intellectual disabilities across Canada and the perceived service gaps should lead to further efforts in Canada for the improvement in services and developing policy.
Abstract: Background People with intellectual disabilities are known to have a high prevalence of mental health problems but few studies have considered how such mental health problems are addressed in Canada. The purpose of the present study was to document both the range of mental health services available to individuals with intellectual disabilities across Canada and the perceived service gaps.
Material and Methods A 30-item questionnaire was developed that included questions on mental healthcare services for children, adolescents and adults with intellectual disabilities. This survey was sent to key informants in the 10 Canadian provinces and three territories.
Results More than half of the respondents reported that generic mental health providers were poorly equipped to meet the needs of individuals with intellectual disabilities and mental health issues. Certain specialized services (inpatient treatment, emergency room expertise) were reported to exist by less than half of the respondents. Waitlists for specialized services were typically 4 months or longer. Respondents thought that training for staff and professionals was very important.
Conclusion Some specialized services for individuals with intellectual disabilities and mental health issues were reported to exist in Canada but the need for more specialized services and further training was identified. Documentation of these service gaps should lead to further efforts in Canada for the improvement in services and developing policy.
TL;DR: The adaptation of the website worked well for participants with intellectual disabilities and users without identified intellectual disabilities were as effective with the adapted site as they were with the non-adapted site.
Abstract: Background: The W3C Web Accessibility Initiative has issued guidelines for making websites better and easier to access for people with various disabilities (W3C Web Accessibility Initiative guidelines 1999). -
Method: The usability of two versions of a website (a non-adapted site and a site that was adapted on the basis of easy-to-read guidelines) was tested with two groups of 20 participants. One group had intellectual disabilities but could read, the other group had no identified intellectual disabilities. In a 2 × 2 experimental design, it was investigated whether the easy-to-read website was indeed better accessible and usable for the participants with intellectual disabilities. -
Results: The adaptation of the website worked well for participants with intellectual disabilities. Users without identified intellectual disabilities were as effective with the adapted site as they were with the non-adapted site. -
Conclusion: The results form an empirical basis for recommendations about applying guidelines for easy-to-read text on websites for people with intellectual disabilities.
TL;DR: The findings are used to suggest conditions under which resilience is produced and maintained, and to identify emergent elements of a psycho-social model of resilience in families with children and adult members with intellectual disabilities.
Abstract: Aim: This paper seeks to illumine how families with children and adult members with intellectual disabilities manage to manifest a buoyant and durable capacity over time. It is therefore concerned centrally with the idea of resilience. Method: Drawing from diverse theoretical literatures from child development and protection and gerontology, the paper begins with a review of constructions of resilience. In an attempt to assess where there seems to be support for resilience in families, the core of the paper tests empirical evidence about positive experiences of families supporting children and adults with intellectual disabilities against the theoretical literature on resilience. Result and Conclusions: The findings are used to suggest conditions under which resilience is produced and maintained, and to identify emergent elements of a psycho-social model of resilience in families with children and adult members with intellectual disabilities.
TL;DR: Clinical judgement is critical in diagnosing autism in Down syndrome, and the ADOS-G, if used alone, over-identifies autism in toddlers with Down syndrome.
Abstract: Research suggests that children with Down syndrome may be at increased risk of having an autism spectrum disorder; however, previous studies have not utilized comprehensive, state-of-the-art diagnostic tools to address the question of comorbid autism and Down syndrome.Comprehensive evaluations for autism were conducted in 20 2-year-old children with Down syndrome. The Autism Diagnostic Observation Schedule-Generic (ADOS-G) and the Autism Diagnostic Interview-Revised (ADI-R) were administered by experienced clinicians, who then determined if the child presented with significant symptoms of autism. Eighteen children participated in a follow-up evaluation at age 4 years.Three children (15%) met criteria for an autism spectrum disorder at both time points, and two (10%) for autistic disorder. Case descriptions are provided. Several children presented with difficulties in communication and play, but did not show problems in core social relatedness. The ADOS-G, if used alone, over-identifies autism in toddlers with Down syndrome.Clinical judgement is critical in diagnosing autism in Down syndrome. Young children may show some signs of autism (particularly in the area of communication) and not have the disorder. Children who have comorbid Down syndrome and autism are particularly challenged, relative to their peers without autism.
TL;DR: In this article, the authors investigated the perceived benefits and negative impact associated with stressful events and chronic caregiving demands encountered by parents caring for young adults with an intellectual disability in the period of transition to adulthood.
Abstract: Background This study investigated the perceived benefits and negative impact associated with stressful events and chronic caregiving demands encountered by parents caring for young adults with an intellectual disability in the period of transition to adulthood.
Methods A sample of 119 parents of young adults described these outcomes in a questionnaire, which were then analysed using qualitative content analysis.
Results Although parents identified a range of negative outcomes, they also reported positive outcomes (perceived benefits) in relation to stressful events and chronic demands encountered in this period, including personal growth and enhanced personal resources.
Conclusions The language of stress and burden often used to describe parents’ experiences during the period of their son or daughter's transition to adulthood, needs to coexist with a language of fulfilment, growth and gain, as used by parents themselves. The implications of these findings, in relation to professional interaction with and support of parents in this period, are discussed.
TL;DR: In this paper, the impact of extended training in positive behaviour support on staff knowledge, causal attributions and emotional responses was studied and found to be associated with better staff performance and better outcomes for people with intellectual disabilities.
Abstract: Background This study sought to gather information about the impact of extended training in positive behaviour support on staff knowledge, causal attributions and emotional responses.
Methods Students completed questionnaires at the beginning, middle and end of a University Diploma course to measure changes in their knowledge of challenging behaviour, their causal attributions and their emotional responses.
Results Students’ knowledge significantly increased across the three data points. Students became less likely to attribute challenging behaviour to emotional causes. Changes in respect of making more behavioural attributions varied across different measures. Negative emotional responses reduced especially those related to depression/anger.
Conclusions The training course presented here was associated with changes in student knowledge, attributions and emotional responses that are likely to be associated with better staff performance and better outcomes for people with intellectual disabilities.
TL;DR: Resources and appraisals did not emerge as significant mediators in analyses using quality of life as a positive outcome, and perceived carer stress emerged as a significant mediator of the relationship between maladaptive behaviour and carer depression.
Abstract: Background Increasing numbers of adults with an intellectual disability are being cared for at home by ageing parents The purpose of this study was to determine whether carer resources (ie social support and formal service use) and carer appraisals of ageing and stress/ burden mediate the relationships between (1) maladaptive behaviour and carer depression; (2) carer health and carer depression; (3) maladaptive behaviour and carer quality of life; and (4) carer health and carer quality of life Methods Eighty parents over the age of 50 were interviewed using a number of measures concerning their overall health, perceptions of ageing and stress, depression, and their child’s maladaptive behaviour Results Carer perceptions of ageing and stress emerged as significant mediators of the relationship between carer health and depression In addition, perceived carer stress emerged as a significant mediator of the relationship between maladaptive behaviour and carer depression Resources and appraisals did not emerge as significant mediators in analyses using quality of life as a positive outcome Conclusions Results highlight the important contributions of appraisals to well-being and raise questions for future research regarding the role of resources such as informal and formal support in the coping process
TL;DR: Overall results suggest that PFT is an effective model for providing support to individuals with challenging behaviours.
Abstract: Background Effectively supporting individuals with intellectual disabilities who display challenging behaviours continues to be a priority for service providers. Person-focused training (PFT) is a model of service delivery which provides staff with skills in functional assessment and intervention development. Existing longitudinal data from a study of 138 cases suggest that implementation of staff-developed behaviour support plans through PFT is effective in reducing challenging behaviour in approximately 77% of cases [McClean et al.Journal of Intellectual Disability Research (2005) vol. 49, pp. 340–353]. However, no control group was used in this study.
Method The current study involves the use of a control group of individuals with challenging behaviours matched against those selected for PFT over a 6-month period. Groups were matched on type of challenging behaviour, duration of challenging behaviour, gender and level of disability. Information on the frequency, management difficulty and severity of challenging behaviour was collected pre- and post-training using the Checklist of Challenging Behaviours (CCB) for both groups. Observational data were collected for the target group alone. Rates of psychotropic medication were tracked across the training period.
Results Significant reductions in the frequency, management difficulty and severity of challenging behaviour were found for service users in the target group but not in the control group after 6 months. No significant changes were found in the use of psychotropic medication for either group over the 6-month period.
Conclusion Overall results suggest that PFT is an effective model for providing support to individuals with challenging behaviours.
TL;DR: Brief training interventions may improve awareness of mental health problems, but further research is needed to understand the referral process and to demonstrate the role of training in influencing actual staff behaviour.
Abstract: Background Care staff play a key role in identifying individuals with intellectual disabilities and additional mental health problems. Yet, few receive training in mental health, and evidence about the effectiveness of training is scant. Materials and Methods A pre–post study is reported, using a mental health screen and a self-report questionnaire to examine staff awareness of mental health problems and to measure whether training improved knowledge of psychopathology, attitudes towards mental health services and referral decisions. Results Prior to training, deficits in awareness were evident. The Psychiatric Assessment Schedule for Adults with a Developmental Disability (PAS-ADD) Checklist detected significant psychopathology in approximately one-third of the individuals judged to have no mental health problems according to staff. Four months after the delivery of training, significant improvements in knowledge, attitudes and referral decisions were observed. Conclusion Brief training interventions may improve awareness of mental health problems, but further research is needed to understand the referral process and to demonstrate the role of training in influencing actual staff behaviour.
TL;DR: The results support the conclusion that parents find family-centred practices more helpful than professionally centred practices, and participatory helpgivingMore helpful than relational helpgiving.
Abstract: Background Studies support the use of family-centred practices in service delivery to families where a parent has an intellectual disability. This paper examines the importance of such practices to parents. Materials and Methods Interview responses from 32 parents with intellectual disability were coded by two independent raters as reflecting family-centred or professionally centred practice. Responses reflecting family-centred practice were then coded as 'relational' or 'participatory' helpgiving. Results Service characteristics considered helpful by parents were more likely to be rated as family-centred prac tice than professionally centred practice. Family-centred practices considered helpful were more likely to be coded participatory than relational helpgiving. Conclusions The results support the conclusion that parents find family-centred practices more helpful than professionally centred practices, and participatory helpgiving more helpful than relational helpgiving. The findings are discussed in relation to the tendency for an 'implementation lag' in service delivery to families.
TL;DR: Concerns are raised about the particularly low levels of part-time work among some mothers of children with disabilities, and about the impact of having a child with severe/profound activity limitations.
Abstract: Background This study compared the workforce participation levels of mothers with and without dependent children with disabilities to provide recent data that could be considered representative of the range of families with dependent children with disabilities. Method Secondary cross-sectional data from a representative Australian household survey were used and subject to quantitative analysis. Results Significantly lower levels of workforce participation were found among mothers of children with disabilities compared with mothers without children with disabilities. There was no evidence of a lesser desire to work. Mother's partnership status and having a child with a severe/profound activity limitation each impacted on the nature of the differences in level of workforce participation. Conclusions The results raise concerns about the particularly low levels of part-time work among some mothers of children with disabilities, and about the impact of having a child with severe/profound activity limitations. Questions are raised about the impact of sole parent status in combination with having a child with a disability.
TL;DR: For some families of pre-school children with developmental disabilities and significant behavioural problems, the Parents Plus programme is an effective intervention and may be incorporated into routine early intervention clinics in the Irish health service.
Abstract: Background This study aimed to evaluate the effectiveness of the Parents Plus programme with families of pre-school children with developmental disabilities and significant behavioural problems in the Irish health service. The Parents Plus programme is a group-based parent training package involving video modelling, which was designed to be effective for children with conduct problems, but without developmental disabilities.
Materials and methods Pre- and post-treatment assessments were conducted with 22 treated cases and 19 waiting-list controls with a protocol that included the Strengths and Difficulties Questionnaire, the Child Behaviour Checklist, the General Health Questionnaire-12, the Kansas Parental Satisfaction Scale, the Family Assessment Device, the Perceived Social Support Scale, the Family Inventory of Life Events and Changes, the Parenting Stress Index and the Questionnaire on Resources and Stress.
Results Following the treatment, a comparison of treatment and control group means showed that the treated group showed better adjustment on the total difficulties scale of the Strengths and Difficulties Questionnaire. These gains were maintained at 10-month follow-up. Fifty per cent of treated cases showed clinically significant improvement and 14% showed reliable change on the Strengths and Difficulties Questionnaire. The treatment group reported a high level of satisfaction with the Parents Plus programme and showed significant goal attainment after treatment and at follow-up.
Conclusions For some families of pre-school children with developmental disabilities and significant behavioural problems, the Parents Plus programme is an effective intervention and may be incorporated into routine early intervention clinics in the Irish health service.
TL;DR: The results of the study support the need to expand services and individualize support to families of adults with intellectual disability living in family homes.
Abstract: Background Taiwanese family carers of people with intellectual disabilities not only suffer from long-term stress but also need to cope with social difficulties. The aim of this study is to evaluate the quality of life (QOL) among family carers of people with intellectual disabilities.
Materials and methods A census interview survey was conducted in Hsin-Chu City in Taiwan and included the primary family caregivers of 792 adults with intellectual disability who were living with their families. The survey packet contained the WHOQOL-BREF Taiwan-version scale with four core domains and the activities of daily life/instrumental activities of daily life (ADL/IADL) scales.
Results The mean score for ‘physical’ was highest and that for ‘environment’ was lowest. The strongest predictors of caregivers QOL were the caregiver's health status, their family income and the level of severity of the intellectual disability of the adult.
Conclusions The results of the study support the need to expand services and individualize support to families of adults with intellectual disability living in family homes.
TL;DR: Skin-picking and compulsive behaviours are common in Prader-Willi syndrome and functional assessment suggest that in most cases, skin-picking may be maintained by contingent arousal reduction, and implications for treatment selection are discussed.
Abstract: Background Individuals with Prader-Willi syndrome (PWS) are at increased risk for mental health and behaviour problems, such as skin-picking and compulsive behaviours. Prevalence and functional assessment of skin-picking, and its association with compulsive behaviour and self-injury, were investigated in a large group of individuals with PWS (n = 119).
Materials and Methods Data on demographic characteristics, skin-picking and compulsive and self-injurious behaviours were collected by questionnaires. Behavioural function of skin-picking was assessed by administering the Questions About Behavioral Function scale.
Results Skin-picking was found in 86% of the sample, and correlated positively with compulsive behaviours. No associations were found between skin-picking and other variables. Functional assessment suggest that in most cases (i.e. 70%) skin-picking primarily had non-social functions.
Conclusions Skin-picking and compulsive behaviours are common in PWS. In most cases, skin-picking may be maintained by contingent arousal reduction. Controlled studies on behavioural treatment are lacking. Implications for treatment selection are discussed.
TL;DR: The ABCL appears to be a reliable and valid measure to assess psychopathology in persons with mild intellectual disabilities or low IQ, admitted for treatment in facilities for adults with mild Intellectual disability and severe challenging behaviour.
Abstract: Background Achenbach & Rescorla (2003) recently developed the Adult Behavior Checklist (ABCL) to assess psychopathology in the general population. The ABCL should be completed by a proxy informant. The use of proxy informants, instead of self-reporting, makes the ABCL potentially suitable for the assessment of psychopathology in adults with intellectual disability. The aim of the present study was to examine reliability and validity of the ABCL in 124 adults with mild intellectual disability or low IQ, and severe challenging behaviour referred for residential treatment.
Methods The ABCL was completed by two independent informants to assess inter-rater reliability. To examine the validity of the ABCL, its relationship with three measures of functioning was assessed. Furthermore, association between scales of the ABCL and DSM-IV axis I disorders was examined.
Results The ABCL was reliable in terms of internal consistency of its scales, and inter-rater reliability. Relationships between clusters of axis I DSM-IV disorders and scales of the ABCL were found as expected. Moreover, ABCL scales predicted different measures of functioning.
Conclusions The ABCL appears to be a reliable and valid measure to assess psychopathology in persons with mild intellectual disabilities or low IQ, admitted for treatment in facilities for adults with mild intellectual disability and severe challenging behaviour.
TL;DR: In this paper, the authors investigate what these factors may be in the context of service provision for adults with intellectual disabilities given the role ICT could play in facilitating communication and access to information and opportunities as suggested in Valuing People.
Abstract: Background Access to, and the use of, information and communication technology (ICT) is increasingly becoming a vital component of mainstream life. First-order (e.g. time and money) and second-order factors (e.g. beliefs of staff members) affect the use of ICT in different contexts. It is timely to investigate what these factors may be in the context of service provision for adults with intellectual disabilities given the role ICT could play in facilitating communication and access to information and opportunities as suggested in Valuing People. Method Taking a qualitative approach, nine day service sites within one organization were visited over a period of 6 months to observe ICT-related practice and seek the views of staff members working with adults with intellectual disabilities. All day services were equipped with modern ICT equipment including computers, digital cameras, Internet connections and related peripherals. Results Staff members reported time, training and budget as significant first-order factors. Organizational culture and beliefs about the suitability of technology for older or less able service users were the striking second-order factors mentioned. Despite similar levels of equipment, support and training, ICT use had developed in very different ways across sites. Conclusion The provision of ICT equipment and training is not sufficient to ensure their use; the beliefs of staff members and organizational culture of sites play a substantial role in how ICT is used with and by service users. Activity theory provides a useful framework for considering how first- and second order factors are related. Staff members need to be given clear information about the broader purpose of activities in day services,especially in relation to the lifelong learning agenda, in order to see the relevance and usefulness of ICT resources for all service users.
TL;DR: The validity and usefulness of the current dichotomous concept of consent is challenged as only a small proportion of participants were deemed able to consent.
Abstract: Background Within the context of current legislation relating to mental capacity in adults, the capacity of people with intellectual disabilities to consent to take part in research studies and the impact of different forms of information provision was experimentally investigated.
Materials and methods A questionnaire measure of ability to consent to take part in this research study was administered individually to participants. A total of 102 participants with intellectual disabilities were recruited from three day services for adults with intellectual disabilities. Consent information appertaining to taking part in an actual research project was presented to participants and their capacity assessed using a questionnaire. Three experimental conditions were used:
• Control (n = 34) – consent information was presented followed by the questionnaire.
• Section (n = 34) – consent information was broken into sections and the appropriate questions were asked following each section.
• Photograph (n = 34) – consent information was accompanied by six colour photographs, followed by the questionnaire.
Participants also completed measures of memory ability, verbal ability and non-verbal problem-solving ability.
Results Seventeen participants withdrew from the study at some point. Of the remaining 85 participants, no significant differences in ability to consent scores were found between the experimental conditions. Using this measure, only five participants (5.9%) were deemed able to consent, i.e. scored the minimum required on each aspect of consent.
Conclusions The validity and usefulness of the current dichotomous concept of consent is challenged as only a small proportion of participants were deemed able to consent.
TL;DR: In this paper, the authors presented several analyses that provide information on the psychometric properties of the BAI and the BDI-II, including cognitive self, cognitive affective/loss of functioning and somatic symptoms.
Abstract: Background There have been several developments in research on emotional disorders in people with intellectual disability (ID). Although a large amount of work has been completed in mainstream clinical fields on the Beck Anxiety Inventory (BAI) and the Beck Depression Inventory– 2nd Edition (BDI-II), to date there has been little work completed on people with ID.
Design This paper presents several analyses that provide information on the psychometric properties of the BAI and the BDI-II. Data on subsamples of the total cohort are also presented.
Method Both assessments were appropriately revised for use with persons with ID and individually administered. A sample of 108 participants from inpatient and community settings completed the assessments. In supplementary analyses, several subsamples of anxiety referrals, depression referrals, sex offenders, other types of offenders, men and women are also presented.
Results The joint factor analyses of the BAI and BDI-II revealed a two factor solution corresponding closely to a depression and anxiety factor. Results from further factor analyses independently demonstrated that the BAI had three factors corresponding to cognitive–subjective anxiety, somatic temperature and somatic balance symptoms. The BDI-II exhibited a three factor structure: cognitive self, cognitive-affective/loss of functioning and somatic symptoms. In the supplementary analyses anxiety referrals had significantly higher scores on the BAI, depression referrals higher scores on the BDI, sex offenders are significantly lower scores on both the BAI and BDI than other groups.
Conclusion The factor structure of the BAI and BDI conforms specifically to those found in research with the general population. Result suggests that both assessments can be used reliably with individuals who have ID.