Search results for ‘Subject term:"learning disabilities"’ Sort:
Results 1 - 10 of 46
The quality of life of family caregivers of adults with intellectual disabilities in Taiwan
- Authors:
- CHOU Yuey-Ching, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 20(3), May 2007, pp.200-210.
- Publisher:
- Wiley
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. 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. 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. 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.
Informal caregivers of people with an intellectual disability in England: health, quality of life and impact of caring
- Authors:
- TOTSIKA Vasiliki, HASTINGS Richard P., VAGENAS Dimitrios
- Journal article citation:
- Health and Social Care in the Community, 25(3), 2017, pp.951-961.
- Publisher:
- Wiley
There is wide variation in reported impact of caring on caregiver well-being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population-representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability (N = 260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio-demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care-giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar-sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well-being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population-representative data. Poverty and long care-giving hours may make caregivers more susceptible to negative well-being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors. (Publisher abstract)
Relationship between self-report and proxy ratings on assessed personal quality of life-related outcomes
- Authors:
- CLAES Claudia, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 9(3), September 2012, pp.159-165.
- Publisher:
- Wiley
Assessing the quality of life (QoL) of a person with intellectual disabilities is often complicated by their limited verbal abilities. Assessment processes often have to rely on informants such as a family member or support worker. This article reports on 2 studies which aimed to evaluate the impact of self-report vs. proxy ratings in the assessment of QoL scores. Study 1 aimed to evaluate the consistency between self-report and direct observation data by support staff. The participants were 161 individuals with mild or moderate levels of intellectual functioning. Study 2 aimed to evaluate the difference between self-report and proxy ratings using direct observation interviews with family and support staff. The participants were 42 individuals with a mild level of intellectual disability. Both studies involved the use of the self-report and the direct observation forms of the Personal Outcomes Scale. Study 1 found significant differences between the 2 respondent groups in 3 QoL domains and an acceptable level of internal consistency for both self-report and direct observation strategies. Study 2 found some differences between client and staff ratings but no significant differences between client and family ratings. The article concludes with noting the need for methodological pluralism in QoL assessment, the importance of self-report by persons with intellectual disability, and the need to develop better strategies to evaluate QoL outcomes for those individuals who cannot respond for themselves.
Quality of life, health satisfaction and family impact on caregivers of children with developmental delays
- Authors:
- HSIEH R. L., et al
- Journal article citation:
- Child: Care, Health and Development, 35(2), March 2009, pp.243-249.
- Publisher:
- Wiley
In order to study the quality of life, health satisfaction and family impact on caregivers of children with developmental delays caregivers of children with diagnoses of developmental delays were recruited from a teaching hospital in northern Taiwan. The main caregivers of 48 male and 22 female children with developmental delays were recruited. WHOQOL-BREF for health-related quality of life (HRQOL), PedsQL-Health Satisfaction for health satisfaction, PedsQL-Family Impact Module and Impact on Family Scale for family impact were evaluated. The correlation of caregivers' HRQOL, health satisfaction and family impact were also studied. Caregivers in nuclear families had higher health satisfaction scores when assessed by the PedQL-Health Satisfaction questionnaire. Children's age was negatively correlated with family impact, including parent, family and total scores as assessed using the PedsQL-Family Impact Module. A negative relation between impact of burden and child's age suggests that family members gradually adapt to the delayed developmental status in their children as they grow. Caregivers in nuclear families having higher health satisfaction than those in extended families may be due to Chinese cultural effects.
A yes man no more
- Author:
- WEBSTER Keith
- Journal article citation:
- Learning Disability Today, July 2008, pp.32-34.
- Publisher:
- Pavilion
- Place of publication:
- Hove
The author, a man with learning disabilities, explains how he received an individual budget through an In Control voluntary pilot scheme, and the difference it has made to his life. Virginia, Keith’s mother, also gives her views of how individual budgets has helped her son.
Support characteristics associated with the quality of life of people with profound intellectual and multiple disabilities; the perspective of parents and direct support staff
- Authors:
- PETRY Katja, MAES Bea, VLASKAMP Carla
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 4(2), June 2007, pp.104-110.
- Publisher:
- Wiley
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, interdisciplinary, 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.
Modern times: an ethnographic study on the quality of life of people with a high support need in a Flemish residential facility
- Authors:
- de WAELE Isabel, Van HOVE Geert
- Journal article citation:
- Disability and Society, 20(6), October 2005, pp.625-639.
- Publisher:
- Taylor and Francis
This ethnographic study shows the impact of the care system on clients’ and staff’s life experiences, with the clear distance between these two groups as one of the core issues. Together with a dominant care approach and a well established but subtile system of control, it makes them function in systems that are characterized by an oppressing care culture. Learned helplessness prevents both groups of acting upon quality of life outcomes. The idea of supporting a life of good quality through merely improving these traditional care systems should therefore be considered with caution, and real alternatives should be considered to open this barrier of the oppressing care culture.
The gentle touch
- Author:
- KENNY Craig
- Journal article citation:
- Nursing Times, 16.6.99, 1999, pp.36-37.
- Publisher:
- Nursing Times
Looks at how guidelines and sensitive negotiation with carers are helping learning disability nurses improve client's lives.
Natural supports: the impact on people with intellectual and developmental disabilities’ quality of life and service expenditures
- Author:
- FRIEDMAN Carli
- Journal article citation:
- Journal of Family Social Work, 24(2), 2021, pp.118-135.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Natural supports are informal (unpaid) relationships that support people with intellectual and developmental disabilities (IDD) in their natural environments and communities. A wide range of people can serve as natural supports for people with IDD, such as family (both biological and chosen), friends, neighbors, community members, etc. Natural supports can positively impact people’s relationships, and community integration. The aim of this study was to examine the connection between natural supports for people with IDD, quality of life, and service expenditures. To do so, we analyzed secondary Personal Outcome Measures® quality of life data and service expenditure data (n = 251) using linear regression models. Our findings suggest people with IDD with natural supports have a better quality of life than people without natural supports. In addition, LTSS service expenditures were $20,000 lower on average for people with IDD with natural supports compared to people without natural supports, regardless of their demographics. As such, we believe natural supports have the potential to improve people with IDD’s lives, build their relationships, and help them integrate into their communities. However, there is danger in utilizing natural supports in lieu of formal services solely for cost-cutting, particularly in a service system that is already underfunded. (Edited publisher abstract)
A 10-year plan for quality living for people with disabilities and their carers
- Authors:
- CRAIG Jocelyn E., CARTWRIGHT Collen
- Journal article citation:
- British Journal of Learning Disabilities, 43(4), 2015, pp.302-309.
- Publisher:
- Wiley
Background: The concerns of older carers of an adult with disabilities have been well documented. The sudden incapacity or death of the carer can result in a crisis response rather than a planned transition to a chosen sustainable alternative care arrangement for the person with disability. Building on previous ‘Futures Planning’ projects, the aim of this project was to enrich the lives of people with disabilities and their carers whilst ensuring that their wishes for the future are documented to provide security. Materials and Methods: This article reports on information sessions and workshops that were held for people with disabilities, their carers and staff, and the training sessions for staff for this project. Results: The sessions underlined the fact that people with disabilities want to enjoy the same experiences that most other people enjoy. Drawing on the ideas and suggestions from participants, the ‘Futures Planning’ documents were modified to meet the aims of the Quality Living project, making them suitable for planning for quality living for the carer and the person with a disability for the next 10 years. Conclusions: Findings supported the concept that planning allows people with disabilities and their carers to take steps to achieve their dreams. (Publisher abstract)