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Discerning the appropriate role and status of Quality of Life assessment for persons with intellectual disability: a reply to Cummins
- Authors:
- AGER Alastair, HATTON Chris
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 12(4), 1999, pp.335-339.
- Publisher:
- Wiley
Identifies three major issues arising from Cummings' (1997) review of quality of life (QOL) assessment for persons with intellectual disability. 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.
Life history: the impact of a changing service provision on an individual with learning disabilities
- Author:
- DI TERLIZZI Michele
- Journal article citation:
- Disability and Society, 9(4), 1994, pp.501-517.
- Publisher:
- Taylor and Francis
The life history of a woman with learning disabilities and severe challenging behaviour is reconstructed with the purpose of identifying the major events during 30 years of her life in institutions. She has no verbal or other means of communication and the study relied on information gathered during interviews with her parents and of previous services members of staff. The description of residential and educational environments provides a background to evaluate the impact of transitions and associated changes in service provision. The discussion adopts a longitudinal approach to identify the combined action of opportunities, support and significant life events on her quality of life. The analysis investigates the relationship between her reported levels of participation and problem behaviours over time.
Caregivers as managers of subjective wellbeing: a homeostatic perspective
- Author:
- CUMMINS Robert A.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 18(4), December 2005, pp.335-344.
- Publisher:
- Wiley
This paper proposes that the adequacy of service delivery and caregiving to people who are disabled should be assessed using two criteria. One is the objective circumstance of living, which should be at a standard acceptable to the community at large. The other is a level of subjective wellbeing (SWB) within the normal range. This latter criterion is based on an understanding that SWB is homeostatically managed to lie normally within a narrow range of values. Results found that people who have a disability are more likely than usual to have a fragile homeostatic system because of the additional life challenges imposed by their disability. It concludes that the role of a caregiver is to provide resources and protection against strong threats to homeostasis, thereby ensuring that the person in their care has a normal-range level of SWB.
Is satisfaction a valid concept in the assessment of quality of life of people with intellectual disabilities? A review of the literature
- Author:
- HENSEL Elizabeth
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 14(4), 2001, pp.311-326.
- Publisher:
- Wiley
This review examines the definitions of quality of life (QoL) which have developed over the past 3 decades and which reflect the increased awareness of the need to take into account individuals' own perceptions of their life. The concept of satisfaction is frequently used as an important subjective variable in QoL studies, despite the evidence of stability of satisfaction over individuals and over time, which suggests that it should be a measure insensitive to change. This evidence is examined and the idea of such stability being an adaptive psychological mechanism is considered. The use of satisfaction as a measure of QoL in people with intellectual disabilities (IDs) is discussed. The methodological difficulties encountered in assessing the subjective experiences of people with IDs are also discussed. Finally, it is argued that there is a strong argument for the abandonment of measures of QoL in general, and subjective ones in particular, for people with IDs. An alternative approach is suggested.
Services for people with mild intellectual disabilities and challenging behaviour: service-user views
- Authors:
- MURPHY G.H., ESTIEN D., CLARE I.C.H.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 9(3), 1996, pp.256-283.
- Publisher:
- Wiley
People with mild intellectual disabilities and challenging behaviour, who had all been service-users at a specialist, hospital-based unit, were interviewed after they had left the service for an average of four and a half years, about their current quality of life and their memories of the service. On the whole, people were still living in the community though many had had a large number of placement moves (and some had returned to hospital or prison). It is argued that there may be a need to re-think services for service-users with challenging behaviours and mild intellectual disabilities.
Services for people with learning difficulties - balancing the interests of users, their families and service providers
- Authors:
- WALKER Carol, WALKER Alan, RYAN Tony
- Journal article citation:
- Social Services Research, 1 1994, 1994, pp.10-19.
- Publisher:
- Social Services Research Group
Looks at the findings of research funded by the North Western Regional Health Authority, which examines the quality of life of 102 people with learning difficulties who moved out of three large long-stay mental handicap hospitals into shared housing in the community. The article focuses on the issues that arise when conducting research with people with learning difficulties and their close family.
Thinking differently? Autism and quality of life
- Authors:
- SMITH Suzanne Jane, et al
- Journal article citation:
- Tizard Learning Disability Review, 24(2), 2019, pp.68-76.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to explore perceptions of quality of life (QoL) of people with a dual diagnosis of learning disability and autism to facilitate a better understanding for clinical practice and service provision. Design/methodology/approach: Mixed methods were used to gain perceptions of QoL from 20 individuals referred to their local diagnostic service. Individuals completed questionnaires and participated in in-depth interviews which were thematically analysed. Findings: Subjective wellbeing scores were lower than those found in previous research. Social interaction was raised extensively with participants describing both positive and negative perceptions. The need for tailored social support and the value of individual control over environment were raised. Research limitations/implications: The study was small in scale and limited to subjects who had been referred for a diagnostic service. The study identified the need for further investigation, particularly in relation to the social relationships domain of QoL, and the impact of stress and anxiety. Originality/value: This study demonstrated that it is possible to access views from this group and that these views are nuanced. It suggests differences between reported QoL in people with learning disabilities who are and who are not autistic. Service design and individual approaches could be improved by a better understanding of these differences. (Edited publisher abstract)
Quality of life Is to experience adult social status
- Authors:
- CARLSSON Oie Umb, ADOLFSSON Päivi
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 15(4), 2018, pp.272-283.
- Publisher:
- Wiley
Quality of life (QoL) has become an important outcome in evaluations of services and support for people with intellectual disabilities (ID). Many people with ID request more say and want to be involved in the development of services and support provision. The original Uppsala QoL (UQoL) model consists of a general essence and hierarchically ordered themes and describes QoL from the perspective of people with ID through individual interviews. The aim of the present study is to examine the UQoL regarding its inherent component parts and to explore the interrelationship between them. The study contributes to the understanding of the concept of QoL from the perspective of people with ID. Focus group interviews were conducted with people with mild and moderate ID. The results indicate that QoL is to experience well‐being. The key component of QoL is to experience adult social status. which is determined by whether the individual experiences having control of their life, experiences a sense of personal safety and feels social belonging. In concordance with the original model, the UQoL2 is mainly made up of components equivalent to those frequently reported in the QoL literature. Nevertheless, some differences require attention. The primary component, adult social status, has not previously been highlighted in the QoL literature. The point of departure in the UQoL model is the users´ perspective rather than the user perspective as perceived by professionals or researchers. The UQoL is not primarily linked to the quality of service provision, but to peoples' daily life. A revised version of the original UQoL is suggested. Unlike the original model, other than the fact which that adult social status is superior, the components are not hierarchically organised, rather the interrelation between them is emphasized. (Edited publisher abstract)
Enhancing support for the mental wellbeing of parents of children with a disability: developing a resource based on the perspectives of parents and professionals
- Authors:
- GILSON Kim-Michelle, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 43(4), 2018, pp.463-472.
- Publisher:
- Taylor and Francis
Background: Raising a child with a disability can place significant strain on the mental wellbeing of parents and carers. This study developed a mental wellbeing resource specifically for parents and carers of children and adolescents with a disability. Methods: Interviews with 20 parents and carers and 13 health and disability service professionals were conducted to determine resource content and format. Results: Key information areas for the resource were information about parent/carer wellbeing; understanding the barriers to wellbeing, including lack of support, being unable to ask for help, being isolated from the community, and having insufficient time or income to spend on self; suggestions on how to organise respite; and opportunities for increasing wellbeing. Conclusions: Given parental mental health is key to the quality of life of the child and family, it is recommended that the resource is distributed to parents and professionals, and adapted for different cultural and linguistic backgrounds. (Publisher abstract)
Evaluating service users’ experiences using Talking Mats®
- Authors:
- STEWART Kitty, BRADSHAW Jill, BEADLE-BROWN Julie
- Journal article citation:
- Tizard Learning Disability Review, 23(2), 2018, pp.78-86.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to establish the effectiveness of Talking Mats® (TM) in evaluating service users’ experiences, and explore their views of the implementation of person-centred active support (PCAS). Design/methodology/approach: This is a mixed-methods study, employing qualitative interviewing and observational measures. Findings: Both qualitative and quantitative measures indicated inconsistent implementation of PCAS. It was possible to effectively gain participants’ views on positive and negative aspects of quality of support and quality of life, using TM, across three themes, My life, My support and Self-determination. Research limitations/implications: Generalisability of the research may be limited due to the sample, and the potential for researcher and interviewer bias is acknowledged. Practical implications: TM provides a mechanism that may facilitate the inclusion of the views and experiences of people with intellectual and developmental disability (PWIDD) who have limited verbal skills. Their views need to be reflected in adaptions made to PCAS. Originality/value: This study included a population who are often left out of qualitative research because of the methodologies adopted. It also included older PWIDD, where there has been less research about the effectiveness of TM. (Edited publisher abstract)