Social workers and allied professionals will find this book to be a valuable tool, highlighting ways of improving the cultural sensitivity of disability services and parental and family support. Combining a wide-ranging survey and in-depth interviews, the authors build a rich picture of the lives of South Asian families with a child with severe disabilities and place their experiences in the wider context of how culture and ethnicity can impact on a family's experience of disability. The authors offer clear ideas for practical improvements in: awareness and mobilisation of formal support servi
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"People with intellectual disabilities die at a younger age and have poorer health than their non-disabled peers. This is largely avoidable and is unjust. This book uses concepts from contemporary public health to provide a comprehensive evidence-based overview of: the nature and extent of the health inequalities experienced by people with intellectual disabilities; why these inequalities occur and persist; and what can and needs to be done to address these inequalities. The authors have a wealth of firsthand experience gained from years of working at the interface between disability research and public health. This experience is collected and shared in this volume, which will be an invaluable resource for practitioners, advocates, policymakers and researchers concerned with health and social care and the wellbeing of disabled people"--Provided by publisher
AbstractIntroductionThere is considerable international research indicating health disparities between people with and without intellectual disabilities. It is important that comparative studies use representative population samples. This study compares a total administrative population of adults with intellectual disability to a random stratified general population sample.MethodsAn administrative population of 217 adults with intellectual disability and a random stratified sample of 2,350 adults without intellectual disability participated. A questionnaire using the International Classification of Diseases (ICD‐10) Chapter Headings was administered to all participants to enable a like‐for‐like comparison.FindingsUnadjusted comparisons identified that adults with intellectual disability have a greater prevalence of health problems. These problems start early in adulthood and continue throughout life. However, they were less likely to experience cancers and musculoskeletal diseases.ConclusionsThese findings are consistent with the hypothesis that adults with intellectual disabilities have greater prevalence rates of health problems than the general population.
BackgroundFaith in the lives of UK families with an adult with intellectual disabilities is an under‐researched area with little existing literature. Research in the United States with Christian parents suggests that they draw on their faith for coping (Rogers‐Dulan 1998) and for understanding (Skinner et al. 1999).MethodsIn this study, grounded theory methodology has been used to examine the impact on pre‐existing parental faith of the birth of a child with intellectual disabilities from the perspective of parents who have parented their children to adulthood. Seventeen parents or couples took part in semistructured qualitative interviews about their faith.ResultsThe majority of parents after their child were diagnosed with intellectual disabilities went through a period of flux when they questioned the role of God in the disability.ConclusionsThe positive or negative connotations of the attempts at meaning‐making did not impact on the eventual outcome for the parents. They eventually put such existential questions aside, accepted their child, and continued in their faith. The implications of the research for health professionals, church organizations and researchers are considered.
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.
Background Research has established a clear relationship between life events and psychopathology amongst children generally, but this relationship has not been investigated in children with intellectual disabilities.Methods A secondary analysis of data collected by the 1999 ONS survey of the Mental Health of Children and Adolescents in Great Britain, investigating associations between adverse life events and psychopathology amongst 264 children with intellectual disabilities and 10 040 children without intellectual disabilities.Results Children with intellectual disabilities were more likely to experience a greater number and range of adverse life events than children without intellectual disabilities, a difference partly accounted for by family poverty. For children with and without intellectual disabilities, there were robust associations between several life events and child psychiatric disorders, most strongly emotional disorder. There also appeared to be a cumulative effect of life events on the psychopathology of children with intellectual disabilities.Conclusions Adverse life events play an important role in the psychopathology of children with intellectual disabilities and require further research attention. Policy interventions to reduce family poverty may have an indirect effect upon child psychopathology.
This paper continues an exchange concerning quality of life measurement and people with intellectual disabilities. It addresses the continuing debate concerning three major issues: the utility of measuring subjective well‐being in assessing service quality; the validity of quality of life as a construct; and the wider context within which quality of life assessment takes place. Evidence is presented to argue that subjective well‐being should not be used to assess service quality, as it is a largely dispositional trait and measures of subjective well‐being can only be reliably completed by a minority of people with intellectual disabilities. Some concerns are raised concerning the validity of current measures of quality of life, in terms of combining objective and subjective aspects of quality of life, summing quality of life domains, and the lack of investigation of the 'psychological reality' of quality of life as a construct. Finally, arguments concerning the potentially unfortunate consequences of adopting a quality of life approach within services are outlined. Such potentially unfortunate consequences are argued not to be caused by malignant motivations on the part of professionals, but to be the result of broader historical and professional processes.
Three major issues arising from Cummins' (1997) review of quality of life (QOL) assessment for persons with intellectual disability are identified. First, Cummins' analysis of pre‐existing measures relevant to the analysis of QOL is argued to be inadequate. Second, the relationship between 'objective' and 'subjective' measures of life experience is proposed to be more complex than that implied by the earlier review. Third, discussion of the appropriate role and status of attempts to measure QOL indicates such measurement may be more empowering of service providers than service users.
Questionnaire data were collected from 59 direct care staff in a residential service for people with multiple disabilities, and compared to actual staff turnover 3 years later. The questionnaire asked for information relating to: demographic characeristics of staff; perceived job tasks and work roles; perceived practical and emotional support from other staff; commitment to the organisation; job satisfaction; coping strategies; perceived stress; and intention to quit the organisation. Staff who had stayed with the organisation were younger, educated to a lower level, more satisfied with promotion prospects and public respect for the job, experienced less role ambiguity and role conflict, and received more practical support from their immediate supervisor, compared to staff who had left the organisation. A logistic regression analysis revealed that the two most important predictors of actual staff turnover were staff satisfaction with public respect for the job and levels of practical support from supervisors. The implications of these findings are discussed.
The nature and extent of residential provision for people with intellectual disabilities in 1991 in England, Scotland and Wales is described. In summary, the data from the OPCS Census suggest that: (1) there existed substantial regional and national variation in the extent of residential provision for people with intellectual disabilities in England, Scotland and Wales; (2) overall, the level of provision was significantly lower than Department of Health targets for 1991 of 1.55 places per 1000 of the adult population; (3) the majority of people with intellectual disabilities were living in relatively large‐scale congregate care settings; (4) the majority of residents were younger and middle‐aged adults, although a significant minority were either late adolescents or very elderly; (5) young black men were significantly more likely to be placed in residential provision than their peers from other ethnic groups; (6) young Asian men, young Chinese/Other men and young Asian women were significantly less likely to be placed in residential provision than their peers from other ethnic groups; (7) rates of employment and marriage among residents were markedly lower than for the general population. The results are discussed in relation to national policy aims and existing and future demand for residential provision.
AbstractThis study reports the development of die Shortened Ways of Coping (Revised) Questionnaire (SWC‐R), a measure of staff coping strategies designed to be easily administered and scored in work settings. The 14‐item self‐report measure is scored into two subscales, Practical Coping and Wishful Thinking, representing distinct Ways of Coping. The reliability of the SWC‐R was evaluated by administering questionnaires containing the SWC‐R to 181 direct care staff in four learning disability services and, in an attempt to explore issues of validity, measures of social desirability, distress, overall job satisfaction, overall life satisfaction, and propensity to leave the organisation. A subset of 30 staff completed the questionnaire twice over a 16‐month period, enabling some exploration of test‐retest reliability and predictive validity. Both subscales show adequate psychometric properties in terms of alpha reliabilities, inter‐item correlations, inter‐scale correlations, and test‐retest reliabilities. While the Wishful Thinking subscale is prone to a social desirability bias, exclusion of such a measure from analyses does not seem to lead to false positive errors. The Wishful Thinking subscale shows a reliable positive association with distress (even over a 16‐month period) and some negative associations with overall life satisfaction, but the Practical Coping sub‐scale is associated with none of the outcome measures used in the study. The further use of the SWC‐R in research concerning direct care staff in human services is recommended.
Psychological Therapies for Adults with Intellectual Disabilitiesbrings together contributions from leading proponents of psychological therapies for people with intellectual disabilities, which offer key information on the nature and prevalence of psychological and mental health problems, the delivery of treatment approaches, and the effectiveness of treatment.Offers a detailed guide to available therapies for adults with intellectual disabilitiesIncludes case illustrations to demonstrate therapies in actionProvides up-to-date coverage of current research in the fieldPuts forward a consideration of the wider contexts for psychological therapy including the relationship with social deprivation, general health, and the cost effectiveness of treatmentPlaces individual interventions in the context of the person's immediate social network including families and carersIncludes contributions from leading proponents from around the world
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Background There is an absence of research concerning the assessment of housing support worker job performance, particularly in the development of job performance measures that reflect the priorities of people with intellectual disabilities and their families.Method A worker‐oriented job analysis method was used to develop four short job performance measures for direct housing support staff, from the perspective of people with intellectual disabilities (n = 82), family members (n = 38), support staff (n = 122) and service managers (n = 115).Results All four job performance measures showed adequate internal and test–retest reliability and showed very few associations with staff and resident characteristics, although there were no associations between the job performance measures. The service user and manager‐rated job performance measures showed the widest range of associations with aspects of staff well‐being, service quality and service user choice and satisfaction with life, and show the most promise as short, practical measures of the job performance of direct housing support workers.Conclusions These methods of developing job performance measures show promise, and further investigation of user‐defined staff competencies is warranted.
