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Abstract  Self‐reports are often used to determine general well‐being in both research studies and practice settings. Proxy reports are also used to gain insight into the well‐being of persons with physical ill‐heath, cognitive impairments, or disabilities. The author reviews the utility and limitations of using self‐ and proxy reports across three populations: older adults, persons with Alzheimer's disease (AD), and persons with intellectual disabilities (ID). For differing reasons, the use of self‐ and proxy reports often results in inaccuracies. Among older adults, the level of subjectivity in questions, type of relationship, and levels of carer burden may influence the outcomes, while increasing severity of dementia and decreased deficit awareness may affect data from persons with AD, and question formats, acquiescence, and level of intellectual development may affect data from persons with ID. However, generally, proxy reports can be useful in determining aspects of well‐being in people with ID, in people with AD, and in the general older population, as long as researchers keep in mind that factors that can enhance (e.g., experiences/abilities that are more objectively assessed, and attention to question format) or diminish (e.g., experiences/abilities that are more subjectively assessed, severity of dementia, and level of ID) the quality of information obtained. With respect to the use of these techniques with people with ID, the author concludes that careful attention to survey items, especially response format and wording, can greatly enhance self‐report completion and proxy concordance.

In conventional diagrams of the new service delivery process, assessment of need is linked to purchase by a single line or arrow; the implication is that purchase follows more or less logically and directly from assessment. This paper focuses on the complex creative work that goes on in the "space" between assessment of need and purchase of service, and the changing influences on that work. "Purchase" is deconstructed to reveal the complex processes and calculations involved, and the ways in which budgets "free" resources and markets influence the final outcome. The paper describes the effects on care package construction and purchase of changing policies, budget arrangements and financial limits; it goes on to outline the difficulties and complications in using information on unit costs in purchasing. Unit costs are only part of a complex equation in which prices are negotiated and total cost juggled in the context of budgets, financial limits, real accessibility and balanced by quality considerations. It is suggested that talk of "playing shops" and use of "off‐the‐shelf" services underestimates the complexity of care package construction and purchase. Micro‐purchase of care services has more in common with dealing and juggling than with lifting standardized, packaged, pre‐priced goods off shelves in Sainsbury's.

AbstractReciprocal benefits may exist in relationships between carers and their adult sons/daughters with intellectual disabilities, but the topic has not been widely studied. The present study investigated whether older carers of adult children with intellectual disabilities perceive emotional and tangible reciprocity in their relationships and the association between perceived reciprocity with quality of life. The authors surveyed 91 parental carers (aged 50+ years, mean = 60.8). Bivariate correlations and hierarchical regression analyses assessed the relationship between tangible and emotional reciprocity and carer quality of life variables (physical and mental health, depressive symptomatology, life satisfaction) and carers' desire for an alternative residential situation of their son/daughter. Overall, more tangible and emotional support was given than received from their adult children. However, despite varying levels of intellectual disability and functional impairments of their care recipient, carers did report receiving considerable support. Relative disadvantage (i.e., giving more than received) in tangible reciprocity was associated with increased depressive symptomatology and poorer mental health but also reduced desire for seeking an alternative residential situation for the person for whom they are caring. These relationships were attenuated after covariance analyses. Emotional reciprocity was not associated with any of the outcome measures. The results suggest that perceptions of reciprocity are relevant in caregiving for intellectual disability and may be an underappreciated asset in coping with caregiving.

AbstractSocial support is a potentially powerful mediator of well‐being for family carers. Given that social engagement often decreases with age, the Internet broadens the opportunities for aging carers of individuals with intellectual and developmental disabilities (I/DD) to provide support to one another. This article reviews what constitutes social support, its importance to older adults, and more specifically carers of those with I/DD. Computer and Internet usage by older adults is briefly reviewed. The Internet as a medium for facilitating social support and support groups for carers is discussed. The role of the Internet in the lives of people with I/DD is also briefly reviewed. The literature review, compiled from a literature search of PubMed, Science Direct, PsycInfo, OvidSP, and CINAHL databases, revealed that there is a relative paucity of information regarding support on the Internet for aging carers, particularly for aging carers for people with I/DD. The review also revealed the utility of the Internet to be utilized as a medium for social support groups. The authors noted that aging adults can acquire new technological abilities and cognitive benefits when learning new skills. Both older adults and individuals with I/DD benefit when web sites are attentive to layout and usability. The authors suggest that Internet‐based aging carer support groups that also incorporate educational content should be developed. Although many research questions remain about the design of Internet‐based carer groups, web sites that appeal to both carers and individuals with I/DD for peer support and information are interesting avenues for further investigation.

Abstract  Recently, more attention is being given to identifying aging‐related and dementia‐related pathological changes in performance and cognition among persons with intellectual disabilities (ID). This literature review examines age‐related differences in specific aspects of cognitive functioning and cognitive performance of people with ID and Alzheimer's disease (AD), as well as what maybe be protective and risk factors. Training interventions designed to enhance cognitive performance are also reviewed. The authors note that greater efforts are urgently needed with respect to delineating the function and deficits in cognitive domains within aging adults. Methodological issues that merit further attention includes utilizing appropriate age ranges and assessment of intra‐individual variability in statistical analysis of cognitive performance. While, consideration should be given to the continued development of specific cognitive tasks and tests that have been developed, validated, and normed for this population, there is still a critical need for more longitudinal data with multiple time points, to assess and track trajectories of change over time, especially as cohort effects of residential living, and educational and vocational opportunities have varied so widely over the last 30 years, and are likely to be a substantial confounding factor. Furthermore, efforts need to ensure that instruments continue to be developed with specificity and sensitivity to detect pathological deficits in AD‐related performance. Lastly, greater research attention is warranted to describe and meet the needs of the burgeoning aging population of people with ID. This will ultimately guide policy makers to develop better practice protocols to maximize cognitive function in normative and pathological aging.

Abstract Family caregiving is increasingly recognized as an important clinical and public policy issue across diverse age groups, and for care recipients with varying physical and mental impairments. While families provide extensive care for aging individuals with intellectual disabilities (ID), family issues directly related to the aging of persons with ID have been understudied. We review major findings in the broader literature on the impact of family caregiving on the caregiver, and the existing research on aging, caregiving, and ID. Aging caregivers for people with ID may be at special risk because of age‐related health and behavioral declines in the aging care recipient and caregiver, the extensive duration of the caregiving role, and concerns about the long‐term care of the care recipient. Balancing these concerns are the normative nature of parental caregiving, and expertise and sense of mastery possibly gained by long‐term caregivers, which may serve to offset the wear and tear of years of caregiving and additional strains of aging. Topics deserving greater attention in future research on caregiving, aging and ID include longitudinal studies of caregiver adaptation, racial/ethnic diversity issues, and assessment of the mental health, physical health, social, and economic impacts on caregivers compared with non‐caregiving age‐matched controls. Intervention studies are also needed to identify evidence‐based interventions to support family caregivers.

Background: One in four Americans have a disability but remain an overlooked minority population at risk for health care disparities. Adults with disabilities can be high users of primary care but often face unmet needs and poor-quality care. Providers lack training, knowledge and have biased practices and behaviors toward people with disabilities (PWD); which ultimately undermines their quality of care. Focus of the Article: The aim is to identify behavior change interventions for decreasing health care disparities for people with disabilities in a healthcare setting, determine whether those interventions used key features of social marketing and identify gaps in research and practice. Research Question: To what extent has the social marketing framework been used to improve health care for PWD by influencing the behavior of health care providers in a primary health care setting? Program Design/Approach: Scoping Review. Importance to the Social Marketing Field: Social marketing has a long and robust history in health education and public health promotion, yet limited work has been done in the disabilities sector. The social marketing framework encompasses the appropriate features to aligned with the core principles of the social model of disability, which espouses that the barriers for PWD lie within society and not within the individual. Incorporating elements of the social model of disability into the social marketing framework could foster a better understanding of the separation of impairment and disability in the healthcare sector and open a new area of research for the field. Results: Four articles were found that target primary care providers. Overall, the studies aimed to increase knowledge, mostly for clinically practices and processes, not clinical behavior change. None were designed to capture if initial knowledge gains led to changes in behavior toward PWD. Recommendations: The lack of published research provides an opportunity to investigate both the applicability and efficacy of social marketing in reducing health care disparities for PWD in a primary care setting. Integrating the social model of disability into the social marketing framework may be an avenue to inform future interventions aimed to increase health equity and inclusiveness through behavior change interventions at a systems level.