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- Möller, Kerstin, 1950-
(författare)
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Impact on participation and service for persons with deafblindness
- 2008
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Persons with deafblindness experience difficulties in daily life and they experience service to sometimes barrier. The overall aim of this thesis is therefore to discover, evaluate and explain: 1. mechanisms that might have impact on participation restrictions for people who have visual and hearing impairment i.e. deafblindness and 2. mechanisms that might barrier service to these people. Service is used as an umbrella term for health care, education and certain service for persons with disabilities. Materials from multiple sources have been used: literature (Study I No 96 papers). Interviews (Study I and V) with 32 and 3 adults with deafblindness respectively. Questionnaires (Study II and III): answered by 33 and 34 adults and youth with deafblindness. Patient records (Study IV and V): records from 9 and 3 adult females with USH I respectively. Materials mostly retrospectively cover the period from 2005 and about 40–50 years. Both quantitative and qualitative methods were used. International Classification of Functioning, Disability and Health (ICF) were consequently used as a framework to describe as well as a tool to analyze mechanisms. Further, the Ecological approach, Disability as a laminated system and Life course approach were used in order to evaluate and explain mechanisms. The conclusions that can be drawn from an ecological, laminated and life course approach are: Participation restrictions for people with deafblindness are far-reaching and are embedded in a complex process of interaction between the person with deafblindness and the environment. Services entail systematical barriers. In order to improve service it is extremely important to understand the role of participation restrictions in deafblindness. Primary activity limitation is to not see and hear enough for comprehension. Hence, not taking part in the visible and audible world is primary participation restriction. Performing activities without basic information includes risk. One important aspect of deafblindness is exposure. Persons with deafblindness require rehabilitation in a life perspective. In order to increase people’s participation and protection requirement of individually adapted support and assistive devices is necessary. ICF and the UN convention support service alterations.
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| 2. |
- Adolfsson, Margareta, 1950-
(författare)
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Applying the ICF-CY to identify everyday life situations of children and youth with disabilities
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Four studies were included in this doctoral dissertation aiming to investigatehow habilitation professionals perceive the ICF-CY in clinical work and to identify everyday life situations specific for children and youth aged 0-17 years. The ICF-CY was the conceptual framework and since the research was conducted on as well as with the ICF-CY, the use of the classification runs like a thread through all the work. The design was primarily qualitative and included descriptive and comparative content analyses. Study I was longitudinal, aiming to explore how an implementation of the ICF-CY in Swedish habilitation services was perceived. Studies II-IV were interrelated, aiming to explore children’s most common everyday life situations. Content in measures of participation, professionals’ perspectives, and external data on parents’ perspectives were linked to the ICF-CY and compared. Mixed methods design bridged the Studies III-IV. Results in Study I indicated that knowledge on the ICF-CY enhanced professionals’ awareness of families’ views of child functioning and pointed to the need for ICF-CY based assessment and intervention methods focusing on child participation in life situations. A first important issue in this respect was to identify everyday life situations. Two sets of ten everyday life situations related to the ICF-CY component Activities and Participation, chapters d3-d9, were compiled and adopted for younger and older children respectively, establishing a difference in context specificity depending on maturity and growing autonomy. Furthermore, key constructs in the ICFCY model were discussed, additional ICF-CY linking rules were presented and suggestions for revisions of the ICF linking rules and the ICF-CY were listed. As the sample of everyday life situations reflects the perspectives of adults, further research has to add the perspective of children and youth. The identified everyday life situations will be the basis for the development of code sets included in a screening tool intended for self- or proxy- report of participation from early childhood through adolescence.
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| 3. |
- Roll-Pettersson, Lise, 1955-
(författare)
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Between open systems and closed doors : the needs and perceptions of parents of children with cognitive disabilities in educational settings
- 2001
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- This thesis consists of three papers on multivariate frailty models and one paper on the use of latent class models in genetic association studies. The common theme through the four papers is the use of latent variables to capture complex dependence structures in the data. The multivariate frailty models define a hazard regression framework to describe general dependence structures in survival data. In the first three papers, three different estimation strategies for multivariate frailty models are presented: (i) an approximate maximum likelihood method leading to estimation equations based on penalized partial likelihood, (ii) a stochastic approximation of the marginal likelihood function using the MCEM algorithm, and (iii) a fully Bayesian frailty model with smoothed baseline hazard. The multivariate frailty models are illustrated with data on hip endoprosthesis, rat carcinogenesis, rose vase lifetime and age at dementia onset in twins.In Paper IV, a latent class model is used to capture unmeasured heterogeneity due to two unknown underlying populations in a genetic population based case-control study. The information about the underlying populations is drawn from additional unlinked genetic markers genotyped from different chromosomes. Association between the candidate gene and the disease is tested with two nested latent class models.In the summary of the thesis, parallel developments in multivariate extensions of the generalized linear model and the multiplicative hazard model are reviewed. The focus is on the estimation and computational aspects of fitting random effects models and on the relative merits of the different methods.
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