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Quality of life: Its application to persons with intellectual disabilities and their families -introduction and overview
- Authors:
- BROWN Roy I., SCHALOCK Robert L., BROWN Ivan
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 6(1), March 2009, pp.2-6.
- Publisher:
- Wiley
The authors provide an overview of quality of life (QoL) conceptualization in the field of intellectual disabilities (ID), provide background information, and set an organizing framework for presenting concepts and concrete ideas for applying QoL. This framework is useful for three broad categories of application in the field of ID that form the application of QoL to individuals, groups of individuals, and to families. QoL thus can be used as a sensitizing notion that gives a sense of reference and guidance from the individual's perspective, focusing on the person and the individual's environment and provides a framework for conceptualizing, measuring, and applying the QoL construct. The applications also frame evaluation strategies for QoL research. The authors conclude that there is a need to identify relevant QoL evidence from the literature in a proactive way, and to ensure that it is methodologically sound, provides both quantitative and qualitative data, represents inter- and intra-individual variability, and illustrates changes over both the lifespan and across cultural settings.
Quality of life: from concept to future applications in the field of intellectual disabilities
- Authors:
- VERDUGO Miguel A., SCHALOCK Robert L.
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 6(1), March 2009, pp.62-64.
- Publisher:
- Wiley
The authors consider conclusions reached with respect to quality of life (QoL) in this special issue of the 'Journal of Policy and Practice in Intellectual Disabilities'. The conclusions are examined in terms of both the past and present developments and within the context of three major areas. These three are (1) application of QoL through support and intervention; (2) the application to family QoL and the development of a working model; and (3) application of QoL for policy and evaluation. These conclusions are examined in relation to implications for public policy in terms of support and intervention, measurement and evaluation, with particular focus on a greater understanding and acceptance of the implications and structure involved in the QoL model and the importance of family QoL. The authors maintain that this should entail the development of applications that are empirically based and, wherever possible, take into account the complexity of mediator variables.
Family quality of life: moving from measurement to application
- Authors:
- ZUNA Nina I., TURNBULL Ann, SUMMERS Jean Ann
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 6(1), March 2009, pp.25-31.
- Publisher:
- Wiley
Thus, the authors propose a theory of family quality of life (FQoL) designed to explain how various concepts - systems, performance, individuals, and family units - influence variations in FQoL. In defining each of the concepts, they describe the theory's application within the context of a family vignette, illustrating how professionals might apply theoretical propositions to their practice. In their application, they stress that the application of the FQoL theory they presented is not an end but rather a developmental stage that leads to further refinement of the FQoL theory. The application and development of this theory is a reciprocal process among researchers, practitioners, and families. Further, their FQoL theoretical model can serve to enable practitioners to examine which family, ecological, and programmatic variables are amenable to change to positively impact FQoL. Given this, they assert that FQoL is not a static concept but, instead, ebbs and flows during the course of raising a child with a disability. They call for further collaborative work among workers to continually improve the FQoL theory and to successfully implement it in practice.
Psychosocial factors affecting adults with intellectual disabilities with psychiatric disorders in Cali, Colombia
- Authors:
- VERDUGO Miguel Angel, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 6(3), September 2009, pp.173-179.
- Publisher:
- Wiley
The objective of this study was to describe the psychosocial factors associated with the comorbidity between intellectual disability (ID) and psychiatric disorder of adults in the city of Cali, Colombia. Subjects were 50 dyads consisting of a carer and a person with ID. The Caregivers Questionnaire and the Integral Quality of Life Scale were adapted for use in the study. The analysis of information was based on three factors: person, family, and society. In the case of the personal factor, an adequate level of physical well-being and a good level of self-care were found in more than 60% of the adults with dual diagnosis, good adherence to treatment in 82%, and medium satisfaction in the individual-context relationship in 54%. With regard to the family factor, a high level of satisfaction of needs (84%) was found. Good family functioning was observed in 86%, while family participation in rehabilitation was reported to be between moderate and deficient in 60% of the cases. With respect to the social factor, cases of support between moderate and deficient were found in 68%, and a regular inclusion was observed in 48%. The authors conclude that the family functioning aspect appeared as the major protective factor, while the inclusion and social support were shown as the main risk factors.
Family quality of life among families with a member who has an intellectual disability: an exploratory examination of key domains and dimensions of the revised FQOL Survey
- Authors:
- WERNER S., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 53(6), June 2009, pp.501-511.
- Publisher:
- Wiley
The Family Quality of Life Survey (FQOLS-2006) was developed as the result of increased interest in family quality of life (FQOL) among families with a member who has an intellectual disability (ID). The instrument includes nine life domains and six dimensions reflecting the main areas and characteristics of FQOL. The aim of the current study was to provide a descriptive analysis of the domains and dimensions of the survey and to explore their relationship to one another and to global satisfaction. A convenience sample of 35 participants with a family member who had ID completed the FQOLS-2006 in a large urban centre in Canada. The data were analysed using descriptive analyses. The findings showed that although participants differentiated between different domains and dimensions, as reflected in their variability, stability was also found. For example, support from others was rated lowest across most dimensions, while family relationships and health of the family were generally rated higher. The findings strengthen the importance of examining both the overall perception of FQOL as well as the perceptions in individual life domains. Moreover, they highlight the need to examine each life domain according to its various dimensions. In sum, the results call for further examination of the FQOLS-2006 as a useful tool for assessing FQOL and for implementing services based on it.
FAIs: issues for families and carers
- Author:
- SMITH Nicola
- Journal article citation:
- SCOLAG Journal, 379, May 2009, pp.120-121.
- Publisher:
- ScoLAG(Scottish Legal Action Group)
This article examines some of the areas covered by a review of the Fatal Accident Inquiry System in Scotland. The review followed the death of Roderick Donnett, a man with Down's syndrome who died whilst living in a care home. The article focuses specifically on key issue for families and carers as well as people with learning disabilities.
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.
Social capital through workplace connections: opportunities for workers with intellectual disabilities
- Authors:
- HALL Allison Cohen, KRAMER John
- Journal article citation:
- Journal of Social Work in Disability and Rehabilitation, 8(3-4), July 2009, pp.146-170.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Disability research now emphasises community participation, inclusion, and integration, with recent thinking shifting away from formal support systems to community support. This qualitative study examined the experiences of individuals with intellectual disabilities in sheltered workshops and compared them to those in community employment. In particular, the study investigated how employment affects opportunities for the creation of social capital, with social capital referring to relationships between individuals and benefits and resources that are mutually produced from those relationships. Primary respondents were twenty nine individuals with intellectual disability, and secondary respondents were twenty three family members and twenty nine employment services staff. Findings revealed that a form of social capital was created through workplace connections. Community employment did not increase social capital per se, but it did produce social opportunities not available in the workshop. The authors note that the role of family members emerged as critical in the support of community employment and its potential for social capital development.
Quality of life of Australian family carers: implications for research, policy and practice
- Authors:
- BURTON-SMITH Rosanne, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 6(3), September 2009, pp.189-198.
- Publisher:
- Wiley
As part of an international, multicentered project, the burden of care, health, and subjective well-being experienced by select Australian family carers supporting a relative with disability at home were investigated. Some 448 family carers residing in New South Wales and Tasmania completed a battery of instruments, including a self-report demographic survey, the Family Caregiver Burden Inventory, the General Health Questionnaire, and the Personal Wellbeing Index. Respondents were predominantly females (mean age = 48 years), married, and supporting a son or daughter with an intellectual disability (mean age = 18 years). Although caring for their family member was not perceived to be a burden, respondents reported notable limitations on their social networks and social activities. They reported higher levels of unemployment than would be expected for the general population and were over represented in lower income groups. They reported seriously low levels of mental health and personal well-being when compared with the general population. The findings revealed that this group of family carers were at high risk of social and economic disadvantage and at high risk of mental health challenges.
Facing up to the challenge
- Author:
- AZMI Sabiha
- Journal article citation:
- Learning Disability Today, 9(3), May 2009, pp.22-24.
- Publisher:
- Pavilion
- Place of publication:
- Hove
The South Asian Family Carers Challenging Behaviour Training Programme which aims to equip South Asian Families who care for someone with learning disabilities and challenging behaviour is outlined. Brief details of the programmes evaluation and outcomes for parents and family carers is also included.