Methodological concerns emerging from matched sample design of - - PowerPoint PPT Presentation
Methodological concerns emerging from matched sample design of disabled people living in Hungary by Bori Simonovits, PhD Quality of Life and Costs of Living and Services of Disabled People in Various Residential Arrangements in Hungary
disabilities living in various residential arrangements; (2) to analyse the cost- effectiveness of the three residential arrangements in terms of social care provision.
(ASD) (3) adults with profound intellectual and multiple disabilities (4) adults with psychosocial disabilities (schizophrenia)
homes and (3) private households
(FSZK) and Hand in Hand Foundation (Kézenfogva Alapítvány)
– Hard-to-sample, due to the lack of proper sampling frame and low prevalence in the population (e.g. the prevalence of autism is around 0,6-1%, schizophrenia approx. 1%) – Hard-to-identify: esp. people with autism, due to the lack of diagnosis in case
disabilities) and false negative cases in case of psychosocial disabilities and motivated misreporting of schizophrenia – Hard-to-contact: esp. those who live at institutions (due to gatekeepers) and to certain extent family homes (could not be contacted or explicitly refused) – Hard-to-persuade: esp. people with psychosocial disabilities and people with autism (high refusal rate » response bias) – Hard-to interview: all target groups, but esp. people with profound intellectual and multiple disabilities » proxies were helped them to translate the questions;
– the respondent’s subjective well-being in eight quality of life domains and some basic socio-demographic characteristics and personal opinion; – Answered by the clients themselves or with the help of a „translator” carer upon request
– answered by a carer (paid or unpaid/family carer) who knows the client and their everyday life well; – provides information on the living conditions, infrastructure and some aspects of
from the “client questionnaire”;
– answered by someone who is familiar with the financial situation – budget, income, spending etc. – of the setting where the participant lives (i.e. institution, group home,
– On the costs and infrastructure of the social provision and care of the client
validated both in terms of internal structure and stability by various international studies (see e.g. Verdugo et al. 2005) and in different cultural contexts (Schalock et al. 2005).
domains)
16)
across different residential arrangements, the criteria of matching varied by groups;
– Intellectual disabilities and autism sub-samples: on the basis of adaptive behaviour (i.e. the collection of practical and social skills used in everyday life) that is considered a key determinant
Mansell 1996). – The sub-sample of people with psychosocial disabilities was matched on the basis of their age. (due to the lack of sufficient information on the time of the first diagnosis of their schizophrenia)
Intellectual disabilities Autism Profound intellectual and multiple disabilities Psychosocial disability Total prior to matching total 130 82 112 138 462 after matching Institution 33
35 99 Group home 33 30 31 35 130 Private household 33 30 31 35 130 Total 99 60 93 105 359
particularly among those with more severe cognitive limitations;
– different groups as proxy respondents in the different residential settings (i.e. paid carers and family carers) and we could not take into account any potential differences between their responses; – paid carers as proxies tend to rate quality of life higher than family carers, esp. in those cases when paid carers know the individual less well (Rand and Caiels 2015); » In general: Social desirability bias (i.e. respondents to answer questions in a manner that will be viewed favourably by others) might be a serious methodological concern in our study
Case-by-case matching was not possible, groups were created based on: » adaptive behaviour categories (e. g independent in less than 4 areas/independent in 5-9 areas of everyday life); » age groups categories (e. g 30-47 years old / 48-65 years old) in case of the people with psychosocial disability; Our matching procedure was far from optimal…
compared (institutions and group homes);
Deinstitutionalization and Community Living. Intellectual disability services in Britain, Scandinavia and the USA. Springer, H. N. 1-16
Jiancheng, X., & Lachapelle, Y. (2005). Cross-cultural study of quality of life
L., & Parmenter, T. (2002). Conceptualization, Measurement, and Application of Quality of Life for Persons With Intellectual Disabilities: Report
survey groups among the poor. Survey protocols, statistical issues and research design. Milestone 20.5. Leuven: InGRID project.
Chapter 1
report.
IDD is important.
aspects are equally important.
– Difficulties with time and quantitative judgements; direct comparisons; socially reflexive questions; abstract concepts and generalised judgements; unfamiliar or sensitive content; multiple-choice formats. – Can lead to bias, such as acquiescence bias, last/first choice responding etc. The self-report questionnaires were extensively piloted with people with different disabilities and in different residential arrangements. As a result:
Yes/No/So-so.
quality of life and life satisfaction questionnaires for people with disabilities developed and used in other countries.
common that are based on the internationally accepted conceptualisation