Study title

Quality of Life of the Mentally Disabled 1991: Severely Disabled

Dataset ID Number

FSD2208

Persistent identifier

urn:nbn:fi:fsd:T-FSD2208

Data Type

Quantitative

Authors

• Autio, Tiina (Finnish Association on Intellectual and Developmental Disabilities. Research unit KOTU)
• Henriksson, Anja (Finnish Association on Intellectual and Developmental Disabilities. Research unit KOTU)
• Kivilä, Tiina (Finnish Association on Intellectual and Developmental Disabilities. Research unit KOTU)
• Matikka, Leena (Finnish Association on Intellectual and Developmental Disabilities. Research unit KOTU)
• Qvist, Anne (Finnish Association on Intellectual and Developmental Disabilities. Research unit KOTU)
• Rehumäki, Marjukka (Finnish Association on Intellectual and Developmental Disabilities. Research unit KOTU)
• Vesala, Hannu (Finnish Association on Intellectual and Developmental Disabilities. Research unit KOTU)
• Öhman, Anneli (Finnish Association on Intellectual and Developmental Disabilities. Research unit KOTU)

Abstract

The project on the quality of life of the mentally disabled was set in motion by the research unit of the Finnish Association on Intellectual and Developmental Disabilities in 1989. The data were collected with the help of video observation and questionnaires aimed at their support persons, because interviews were not possible to conduct.

The quality of life of the severely disabled was studied from several viewpoints. Their support persons, such as nurses or family members, assessed the housing, hobbies, social relationships, work and daily activities of the disabled person they worked with. Housing was examined by asking about chances to influence housing conditions as well as limitations set by others. The questions on work and daily activities included the content and meaningfulness of the activities, the disabled person's ability to perform certain tasks, and learning new skills. Other areas of life were investigated by asking about dining, managing one's own affairs, social relationships, and whether the target person had the power to decide on his/her clothing, for example.

The background information was collected at the same time with the interviews of the mildly disabled. Background variables included the target person's year of birth, mother tongue, Special Services District, parents' education level and occupation, and the number of siblings. Relating to target person's disability, questions about mobility, oral expression, and living in institutions were asked. In addition to the background information on target persons, some background information on the support persons was collected as well. Because some of the support persons were health care professionals and others family members, the questions varied slightly according to the respondent. The common background variables included the respondent's gender and year of birth. The health care professionals were asked about their job title, work experience in the field, and how long they had known the target person. The family members were asked how they were related to the target person.

Keywords

activities of daily living; housing; intellectual impairment; interpersonal relations; leisure time; living conditions; mental health; mentally disabled persons; quality of life; social networks; social services; social skills

Topic Classification

• Social sciences (Fields of Science Classification)
• Minorities (CESSDA Topic Classification)

Series

Individual datasets

Distributor

Finnish Social Science Data Archive

Access

The dataset is (B) available for research, teaching and study.

Data Collector

• Autio, Tiina (Finnish Association on Intellectual and Developmental Disabilities. Research unit KOTU)
• Henriksson, Anja (Finnish Association on Intellectual and Developmental Disabilities. Research unit KOTU)
• Kivilä, Tiina (Finnish Association on Intellectual and Developmental Disabilities. Research unit KOTU)
• Matikka, Leena (Finnish Association on Intellectual and Developmental Disabilities. Research unit KOTU)
• Qvist, Anne (Finnish Association on Intellectual and Developmental Disabilities. Research unit KOTU)
• Rehumäki, Marjukka (Finnish Association on Intellectual and Developmental Disabilities. Research unit KOTU)
• Vesala, Hannu (Finnish Association on Intellectual and Developmental Disabilities. Research unit KOTU)
• Öhman, Anneli (Finnish Association on Intellectual and Developmental Disabilities. Research unit KOTU)

Data Producers

• Finnish Association on Intellectual and Developmental Disabilities

Time Period Covered

1990 – 1992

Collection Dates

1990-06 – 1992-05

Nation

Finland

Geographical Coverage

Finland

Analysis/Observation Unit Type

Individual

Universe

Finnish severely disabled persons aged 18 or over and living in Finland (excluding the Åland Islands)

Time Method

Cross-section

Sampling Procedure

Probability: Systematic random

Two samples, the base sample and the additional sample, were drawn for the survey on 30 September 1989. The base sample was a systematic cluster sample of special services units.

The respondents' units were collected from the 1988 catalogue of the Finnish Special Services Units. For the base sample, a starting point was randomly chosen from the catalogue covering the whole country in alphabetical order. From the starting point, every 40th unit was included. Because small nursing homes were poorly represented in the catalogue, the base sample had to be supplemented. Therefore, a catalogue covering small nursing homes was produced in co-operation with the Finnish Special Services Districts. The sample drawn from this catalogue, using the sampling interval of 20, was added to the base sample.

For the additional sample, lists according to Special Services Districts were compiled from the 1988 catalogue of the Finnish Special Services Units. From these lists, every 6th unit was included to form the additional sample.

The sample included 38 work units and 60 residential units. Because the sample was unit-specific, the number of persons included in the survey could not be accurately known in advance. Therefore, some reductions had to be made within the units. The aim was to select 5 to 10 persons living or working together from every unit. If there were several relevant groups within the unit, only one of them was included by a random selection. The whole project included 822 mentally disabled persons. Interviews were possible to conduct with 619 of them, but 162 could not be interviewed. In order to receive information on the life of every disabled person within the sample, the respondents were divided into two subgroups: mildly disabled and severely disabled. The mildly disabled group included those who could be interviewed. The severely disabled group had to be studied with the help of video observation, biographies, and questionnaires aimed at the support persons.

Collection Mode

Self-administered questionnaire: Paper

Research Instrument

Structured questionnaire

Response Rate

95

Data File Language

Downloaded data package may contain different language versions of the same files.

The data files of this dataset are available in the following languages: Finnish.

FSD translates quantitative data into English on request, free of charge. More information on ordering data translation.

Data Version

2.0

Related Datasets

FSD2207 Quality of Life of the Mentally Disabled 1991: Mildly Disabled

Completeness of Data and Restrictions

Variables indicating the hall of residence (k4), work place (k5), support person's work place (lh2), and address have been removed from the data.

Weighting

There are no weight variables in the data.

Citation Requirement

The data and its creators shall be cited in all publications and presentations for which the data have been used. The bibliographic citation may be in the form suggested by the archive or in the form required by the publication.

Bibliographical Citation

Autio, Tiina (Finnish Association on Intellectual and Developmental Disabilities) & Henriksson, Anja (Finnish Association on Intellectual and Developmental Disabilities) & Kivilä, Tiina (Finnish Association on Intellectual and Developmental Disabilities) & Matikka, Leena (Finnish Association on Intellectual and Developmental Disabilities) & Qvist, Anne (Finnish Association on Intellectual and Developmental Disabilities) & Rehumäki, Marjukka (Finnish Association on Intellectual and Developmental Disabilities) & Vesala, Hannu (Finnish Association on Intellectual and Developmental Disabilities) & Öhman, Anneli (Finnish Association on Intellectual and Developmental Disabilities): Quality of Life of the Mentally Disabled 1991: Severely Disabled [dataset]. Version 2.0 (2018-07-23). Finnish Social Science Data Archive [distributor]. https://urn.fi/urn:nbn:fi:fsd:T-FSD2208

Deposit Requirement

Notify FSD of all publications where you have used the data by sending the citation information to user-services.fsd@tuni.fi.

Disclaimer

The original data creators and the archive bear no responsibility for any results or interpretations arising from the reuse of the data.

Related Publications

Tahdon elää itse: ryhmäkeskusteluja kehitysvammaisten elämänlaadusta / suunn. Anneli Öhman; kuvaus Reijo Meronen. Kehitysvammaliitto, 1990. Videotallenne.

Työ on tärkeää: ryhmäkeskusteluja kehitysvammaisten elämänlaadusta / suunn. Anneli Öhman; kuvaus Reijo Meronen. Kehitysvammaliitto, 1996. Videotallenne.

Elämänlaadun kysymyksiä: kehitysvammaisten elämänlaatu -projektin haastattelu- ja kyselylomakkeet (1993). Toim. Matikka, Leena.Valtakunnallisen tutkimus- ja kokeiluyksikön monisteita; 8.

Ainakin puolet onnellinen (1991). Filminova. Kehitysvammaliitto, 1991. Videotallenne.

Öhman, Anneli (1993). Vaikeammin vammaisten sosiaaliset suhteet. Kehitysvammaliiton julkaisuja; 17.

Vesala, Hannu (1992). Vaikeammin kehitysvammaisten päivätoiminta: lähihenkilökyselyn tuloksia. Kehitysvammaliiton julkaisuja; 14/1992.

Qvist, Anne (1992). Vaikeammin kehitysvammaisten elämänlaatutietoa: lähihenkilökyselyn tuloksia taulukoina. Valtakunnallisen tutkimus- ja kokeiluyksikön monisteita; 7.

Matikka, Leena M. & Vesala, Hannu T. (1997). Acquiescence in quality-of-life interviews with adults who have mental retardation. Mental Retardation 35(2), 75-82.

Matikka, Leena (1994). The quality of life of adults with developmental disabilities in Finland. In: Quality of life for persons with disabilities: international perspectives and issues (ed. David Goode), 22-38. Cambridge: Brookline Books.

Matikka, Leena (1996). Effects of psychological factors on the perceived quality of life of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 9, 115-128.

Matikka, Leena (2000). Comparability of quality-of-life studies of the general population and people with intellectual disabilities. Scandinavian Journal of Disability Research 2(1), 83-102.

Matikka, Leena (1999). Kehitysvammaisten ja muun väestön elämänlaadun vertailu lama-Suomessa. Teoksessa: Kehitysvammatutkimusta 1997: artikkeleita 3. kehitysvammatutkimuksen konferenssista (toim. Hannu Vesala), 60-74. Valtakunnallisen tutkimus- ja kokeiluyksikön julkaisuja; 78.

Koho, Pirkko (1998). Kommunikaatiokyvyn yhteys vaikeimmin kehitysvammaisten elämänlaatuun. Pro gradu -tutkielma. Kuopion yliopisto, Kansanterveystieteen ja yleislääketieteen laitos.

Kivilä, Tiina (1994). Näin minä asun: itsenäisyys, päätösmahdollisuudet sekä sosiaalinen vuorovaikutus eri asumismuodoissa. Pro gradu -tutkielma: Jyväskylän yliopisto, Erityispedagogiikan laitos.

Henriksson, Anja (1991). Kehitysvammaiset elämänlaatutyöryhmässä: kehitysvammaisten aikuisten elämänlaatutyöryhmän työskentelyn kuvailua ja arviointia. Aikuiskoulutuksen syventävien opintojen tutkielma: Helsingin yliopisto, Kasvatustieteen laitos (lyhennelmä julkaistu Kehitysvammaliiton julkaisuja 4/1992).

Autio, Tiina & Öhman, Anneli (1995). Ystävyys, rakkaus ja elämänlaatu: kehitysvammaisten elämänlaatu -projekti. Helsinki: Kehitysvammaliitto. Selkokirja.