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Participation through ICT: – studies of the use and access to ICT for young adults with intellectual disability
Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.ORCID iD: 0000-0002-2929-9902
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The right to full participation in society is stated in law to ensure that vulnerable groups such as people with intellectual disability have the same rights and possibilities as the general population. Technological development has changed the conditions of participation in society, including the types of interactions, information and societal services. Many young adults with mild to moderate intellectual disability require support in daily life. In Sweden, this is provided by the government, and each municipality is responsible for the provision of social care for people with disability. The changes in society and technology require that the providers of social care adopt technologies to enable participation.

     The overall aim of the thesis was to identify the prerequisites for and aspects that enable the use of information and communication technology (ICT) and their effects on participation in daily life among young adults with mild to moderate intellectual disability (ID) resident in municipal disability services.

     Using a quantitative descriptive approach, this thesis starts by mapping the organizational support throughout the country. This is followed by three qualitative studies. Focus group interviews with staff in residential care were conducted and analysed in Study II (a narrative analysis) and Study III (a content analysis). These studies focused on staff perceptions of the use of ICT by these young adults and how staff’s way of work enabled or hindered ICT use by these young adults. Study IV included interviews of young adults with mild to moderate intellectual disability living in municipal residential care about their daily ICT use.

     The thesis findings show that the municipal organizations lack a comprehensive strategy of support for the use of ICT and instead trust staff to provide the needed support to the young adults in daily life situations. Staff members described the difficulties they encountered when providing this support for ICT, which were partly because of the lack of organizational resources. Despite these perceived problems, staff members displayed enthusiasm about introducing and supporting ICT use for young adults with mild to moderate ID if adequate resources would be provided by the organization. They described both positive and negative aspects of ICT use by these young adults in relation to service provision and the young adults’ private lives.

Abstract [sv]

Rätten till fullt deltagande i samhället anges i lag, för att säkerställa att utsatta grupper såsom personer med utvecklingsstörning ges samma möjligheter som övriga befolkningen. Den tekniska utvecklingen har förändrat förutsättningarna för var, och hur delaktighet, i form av interaktioner, information och samhällstjänster, äger rum. Många unga vuxna med mild till utvecklingsstörning har behov av stöd i det dagliga livet. I Sverige tillhandahålls detta av samhället och varje kommun ansvarar för tillhandahållandet av funktionshinderomsorgen. Såväl samhällsutvecklingen som teknikutvecklingen kräver att funktionshinderomsorgen anpassar arbetssättet för att möjliggöra deltagande i, och genom tekniken. Det övergripande syftet med denna avhandling är därför att belysa förutsättningar för, och möjliggörande av informations- och kommunikationsteknik (IKT) och dess påverkan på delaktighet i det dagliga livet bland unga vuxna med lindrig till måttlig utvecklingsstörning inom kommunal funktionshinderomsorg.

     Inledningsvis användes en kvantitativ beskrivande ansats för att nationellt kartlägga det organisatoriska stödet för IKT inom den kommunala funktionshinderomsorgen. Detta följdes av tre kvalitativa studier. Fokusgruppintervjuer med personal inom funktionshinderomsorgen genomfördes och analyserades i studie II (innehållsanalys) och studie III (narrativ analys). Dessa studier fokuserar på personalens erfarenhet av de unga vuxnas IKT-användning samt hur deras arbetssätt möjliggör eller hindrar de unga vuxna att använda IKT. Den fjärde studien är en intervjustudie med de unga vuxna med mild till måttlig utvecklingsstörning, som bor i kommunal funktionshinderomsorg om deras dagliga IKT-användning.

     Resultaten visar att de kommunala organisationerna saknar en övergripande strategi för stöd till IKT-användning men förlitar sig på att personal ska ge stöd till de unga vuxna i vardagssituationer. Personalen redogör å andra sidan för svårigheter att ge stöd till IKT, delvis på grund av bristande organisatoriska resurser. Trots detta visar personalen entusiasm inför att vara de som introducerar och stöttar användningen av IKT, förutsatt att adekvata resurser ges från organisationen. Dessutom beskriver de både positiva och negativa aspekter av IKT-användning för de unga vuxna i förhållande till det dagliga stödet samt den unga vuxnas privatliv. En hindrande aspekt kan dock vara personalens risktänk av sociala medier i förhållande till utvecklingsstörningen, varför IKT och i synnerhet Internet ibland betraktas som olämpligt. De unga vuxna själva beskriver inte risker i deras IKT-användning, utan snarare en ganska normativ användning för sociala relationer, underhållning och ensamt tidsfördriv. Delaktighet i flera olika livssfärer beskrivs möjliggöras genom IKT-användning.

Place, publisher, year, edition, pages
Västerås: Mälardalen University , 2018.
Series
Mälardalen University Press Dissertations, ISSN 1651-4238 ; 272
Keywords [en]
Environment, Information and communication technology, Intellectual disability, Participation, Social care
National Category
Medical and Health Sciences Health Sciences
Research subject
Social Work
Identifiers
URN: urn:nbn:se:mdh:diva-40735ISBN: 978-91-7485-404-6 (print)OAI: oai:DiVA.org:mdh-40735DiVA, id: diva2:1247509
Public defence
2018-10-19, Delta, Mälardalens högskola, Västerås, 13:15 (Swedish)
Opponent
Supervisors
Available from: 2018-09-12 Created: 2018-09-12 Last updated: 2018-09-19Bibliographically approved
List of papers
1. A Balance of Social Inclusion and Risks: Staff Perceptions of Information and Communication technology in the Daily Life of Young Adults with Mild to Moderate Intellectual Disability in a Social Care Context
Open this publication in new window or tab >>A Balance of Social Inclusion and Risks: Staff Perceptions of Information and Communication technology in the Daily Life of Young Adults with Mild to Moderate Intellectual Disability in a Social Care Context
(English)In: Journal of Policy and Practice in Intellectual Disabilities, ISSN 1741-1122, E-ISSN 1741-1130Article in journal (Refereed) Accepted
Abstract [en]

Background: Information and communication technology (ICT) has increased in importance and facilitates participation in several life areas throughout society. However, young adults with mild to moderate intellectual disability make less use ICT than the general population. Disability services staff play a central role in supporting and enabling service users in daily life, and their perceptions of ICT are important to their role in service provision.

Aim: To describe staff perceptions of the role of ICT and how it affects daily life in young adults with mild to moderate intellectual disability living in residential homes.

Method: Focus group interviews and individual interviews were conducted with staff working in residential homes in which young adults with mild to moderate intellectual disability live. All materials were transcribed verbatim and analysed using latent content analysis.

Findings: Staff perceived ICT and, more specifically, the Internet as being supportive of both daily life and social relationships of these young adults, but they also viewed ICT as posing social risks. Perceptions of and support for ICT were related to staff perceptions about what is appropriate and manageable in relation to an individual resident’s functioning level. Staff members also considered the views of parents about appropriate content when providing support.

Discussion: Staff in residential homes for young adults with mild to moderate intellectual disability use their implicit moral judgement about the use of ICT by residents. Their enablement of and support for ICT are not primarily based on the service user’s wishes or interests. This finding implies a risk that the organization of a conflict-free service provision is a higher priority than service users’ participation in social life.

Keywords
Information and communication technology, intellectual disabilities, participation, social care, moral work
National Category
Medical and Health Sciences
Research subject
Social Work
Identifiers
urn:nbn:se:mdh:diva-40914 (URN)
Available from: 2018-09-12 Created: 2018-09-12 Last updated: 2018-10-01Bibliographically approved
2. Information and communication technology use in daily life among young adults with mild to moderate intellectual disability
Open this publication in new window or tab >>Information and communication technology use in daily life among young adults with mild to moderate intellectual disability
(English)In: Journal of Intellectual Disabilities, ISSN 1744-6295, E-ISSN 1744-6309Article in journal (Refereed) Epub ahead of print
Abstract [en]

Information and communication technology (ICT) increases participation in life activities, and young adults are frequent users. Young adults with intellectual disability (ID) do not use ICT as much as their peers, and little is known about how ICT is used by young adults with ID. This study describes the use of ICT from the perspective of young adults with mild to moderate ID in a municipal social care context. Semi-structured interviews were used to collect information from 11 young adults with mild-to-moderate ID living in residential care and analysed using a content analysis. ICT was used for family relationships, daily support, interactions based on interests and amusement, and as support for offline activities. Family members were important providers of support for ICT use. Young adults with mild-to-moderate ID use ICT in their daily life. The social care context needs to be further investigated due to its influence on the young adults' access to ICT and need of support.

Keywords
information and communication technology; intellectual disability; social care; young adults
National Category
Medical and Health Sciences
Research subject
Social Work
Identifiers
urn:nbn:se:mdh:diva-40913 (URN)10.1177/1744629518784351 (DOI)
Available from: 2018-09-12 Created: 2018-09-12 Last updated: 2018-09-14Bibliographically approved
3. ICT and Intellectual Disability: A Survey of Organizational Support at the Municipal Level in Sweden
Open this publication in new window or tab >>ICT and Intellectual Disability: A Survey of Organizational Support at the Municipal Level in Sweden
2017 (English)In: JARID: Journal of applied research in intellectual disabilities, ISSN 1360-2322, E-ISSN 1468-3148, Vol. 30, no 4, p. 705-713Article in journal (Refereed) Published
Abstract [en]

Young adults today have grown up in a society where information and communication technology (ICT) support empowerment and social participation. Young adults with mild-to-moderate intellectual disability are at risk for marginalization by the digital divide. The aim was to map and describe how municipal organizations in Sweden organize support in terms of policy and strategies to enable the use of ICT in social care for adults with a mild-to-moderate intellectual disability. MethodsA quantitative, cross-sectional survey including all municipalities in Sweden (n=290) was conducted (response rate: 51%, n=147). Descriptive statistics were used. Results: Findings indicate a lack of organizational support for staff as well as for young adults with mild-to-moderate intellectual disability. Conclusion: Municipalities request more knowledge about strategies for making ICT available. Despite the lack of comprehensive strategies for ICT, some Swedish municipalities have taken the initiative in this area.

Place, publisher, year, edition, pages
WILEY, 2017
Keywords
health and social policy, information and communication technology (ICT), intellectual disability, social care, young adults
National Category
Social Work
Identifiers
urn:nbn:se:mdh:diva-35892 (URN)10.1111/jar.12265 (DOI)000402816500012 ()27271152 (PubMedID)2-s2.0-84973547923 (Scopus ID)
Available from: 2017-06-22 Created: 2017-06-22 Last updated: 2018-09-12Bibliographically approved
4. “Not always having to be face-to-face” – using ICT for independence and participation in disability services
Open this publication in new window or tab >>“Not always having to be face-to-face” – using ICT for independence and participation in disability services
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Information and communication technology (ICT) has increased in importance for participation purposes. For young adults with mild to moderate intellectual disability (ID), staff are key support people, especially as difficulties with accessing and using ICT can hinder participation. The aim of the study is to reveal staffs’ way of work with young adults’ with mild to moderate ID independence and participation through ICT. A narrative analysis and interaction theory are used to analyse focus group interviews with staff in a residential care setting. The findings show that ICT is used to increase togetherness between the young adults and as a face-saving strategy that offers independence and can neutralise the asymmetric power relations. In addition, the lack of organisational resources appears to hinder the introduction and use of ICT for participation purposes.

Keywords
ICT, intellectual disability, mediated interaction, narrative, participation
National Category
Medical and Health Sciences
Research subject
Social Work
Identifiers
urn:nbn:se:mdh:diva-40915 (URN)
Available from: 2018-09-12 Created: 2018-09-12 Last updated: 2018-09-19Bibliographically approved

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