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Falling through the cracks. A study on young adults with intellectual disability not involved in employment, education or daily activity
Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).ORCID iD: 0000-0002-9920-8041
2020 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The time after finishing secondary school is marked by changes and milestones of adulthood. There is increased attention and knowledge that for some individuals in the general population, the time after secondary school consists of not participating in an occupation. However, there is limited knowledge and research on young adults with intellectual disability who after special upper secondary school find themselves in this situation. In this thesis, these individuals are referred to as Not in Employment, Education, or Daily activity(NEED). The general aim of the thesis is to increase knowledge about young adults with intellectual disability who after upper secondary school are NEED, by providing deeper understanding and analysis of the target group’s characteristics and associations with NEED status, as well as to study the subjective experiences of becoming and being NEED. This is a compilation thesis consisting of two studies that have led to four articles, as well as an introductory comprehensive summary. The four articles have different focuses but together provide a nuanced understanding of the target group.

The first study is a register study, which is the basis for article I and II. The register study used the national Halmstad University Register for Pupils with Intellectual Disability (HURPID) and two other Swedish registers to conduct statistical analyses. Article I explored the situation after USSID for the NEED group in terms of background factors, financial support and the use of disability services. The findings showed the heterogeneity of the group. Many had financial supports, but few used disability services. Moreover, background factors, financial support and use of disability services had various significant associations with not having an occupation. Article II described and analyzed the group’s family situation and how this relates to not participating in an occupation as opposed to being in an occupation of employment, education or daily activity. Family situation in the target group varied depending on sex, age, and immigrant background. Regression analyses illustrated the significance of family situation to occupational status; however the results differed between men and women. Factors of partnerships and having children were found to be associated with not participating in an occupation for women, but not for men. The second study is an interview study that is the basis for article III and IV. Interviews were conducted with 10 participants from the target group and these were analyzed with thematic analyses. Article III analyzed first-hand experiences of becoming and being NEED, and encounters with agencies and institutions. The results indicated that the experience of not having an occupation is influenced by individual and environmental factors. It was common to experience limited post-school occupations, face challenges with finding an occupation, and difficulties with navigating and attaining appropriate formal support. The experiences of not being involved in an occupation is discussed as a form of social exclusion. Article IV examined the group’s social relationships, networks and experiences of belonging. The results found that individuals had social relationships and networks in informal domains (family, friends, partners), but also in organized settings (the support and service system, recreational activities). These relationships provided feelings of acceptance, support, and care which all related to a sense of belonging. However, within their experiences of belonging these individuals were simultaneously striving for increased independence. This duality between belonging and independence at times clashed, as well as was influenced and amplified by dimensions surrounding having an intellectual disability.

The overall empirical findings are analyzed through the use of ecological systems theory, and theories of social exclusion and belonging. An ecological approach allows for organizing and identifying different aspects of the environment, characteristics of the individual as well as interactions occurring between them, that help in understanding becoming and being NEED. Social exclusion and belonging more closely examine different perspectives of not having an occupation. These concepts are regarded as existing on a continuum where individuals in the target group can experience varying degrees of both, depending on context and situation. Within both social exclusion and belonging, some people with intellectual disability are displaying an active choice. These individuals are resisting categorization by choosing to not partake in the supports and settings associated with an intellectual disability. The conclusion of this thesis is that young adults with intellectual disability who are not participating in an occupation is a complex phenomenon. To understand this more in-depth many different factors, interactions and experiences have to be considered. There is a great need to develop resources and services that have a holistic approach that also fit with individual needs and desires, in order to better promote participation and prevent individuals from falling through the cracks.

Abstract [sv]

Tiden efter gymnasieskolan präglas av förändringar och vuxenmarkörer. Forskning visar att tiden efter gymnasiet för vissa unga vuxna kännetecknas av att inte ha en sysselsättning. Det finns dock begränsad kunskap och forskning om unga vuxna med intellektuell funktionsnedsättning som efter gymnasiesärskolan befinner sig i en sådan situation, d.v.s. som varken arbetar, studerar eller har sin sysselsättning inom daglig verksamhet. I den här avhandlingen benämns dessa individer som Not in Employment, Education or Daily activity (NEED). Syftet med denna avhandling är att öka kunskapen om unga vuxna med intellektuell funktionsnedsättning som efter gymnasiesärskolan inte har sin sysselsättning i arbete, studier eller daglig verksamhet (NEED), genom att ge djupare förståelse och analys av gruppens karakteristik och samband med att vara NEED samt att studera de subjektiva erfarenheter av att bli och vara NEED. Detta är en sammanläggningsavhandling som består av två studier som har lett till fyra artiklar, samt en ramberättelse (kappa). De fyra artiklarna har olika fokus men ger tillsammans en nyanserad förståelse av målgruppen.

Den första studien är en registerstudie, som ligger till grund för artikel I och II. Registerstudien använde det nationella registret Halmstad University Register for Pupils with Intellectual Disability (HURPID) vilket har samkörts med två andra svenska register. Statistiska analyser har gjorts som beskriver och undersöker samband i gruppen. Artikel I undersökte situationen efter gymnasiesärskolan för NEED-gruppen utifrån bakgrundsfaktorer, ekonomiskt stöd och LSS-stöd. Resultaten visade att detta är en heterogen grupp. Många hade ekonomiskt stöd, men få hade LSS-insatser. Dessutom hade bakgrundsfaktorer, ekonomiskt stöd och LSS-stöd olika samband med att inte ha en känd sysselsättning. Artikel II beskrev och analyserade gruppens familjesituation och hur detta relaterar till att vara NEED. Familjesituationen i målgruppen varierade beroende på kön, ålder och om man har invandrarbakgrund. Regressionsanalyser visade att familjesituation har betydelse för att vara NEED, men resultaten skiljde sig mellan män och kvinnor. Exempelvis, faktorer som partnerskap och att ha barn var signifikanta för att vara NEED för kvinnor, men inte för män.

Den andra studien är en intervjustudie som ligger till grund för artikel III och IV. Intervjuer genomfördes med 10 personer från målgruppen och analyserades med tematisk analys. Artikel III analyserade erfarenheter av att bli och vara NEED, samt mötet med olika myndigheter och institutioner. Resultaten visade att upplevelsen av att inte ha en känd sysselsättning påverkas av individ och miljöfaktorer. Det var vanligt att uppleva att alternativen efter gymnasiesärskolan är begränsade, samtidigt som det finns utmaningar med att hitta en sysselsättning och svårigheter att navigera och få stöd från olika stödsystem. Dessa erfarenheter diskuteras som en form av social exkludering. Artikel IV undersökte gruppens sociala relationer, nätverk och upplevelser av tillhörighet. Den visade att individer inom NEED-gruppen har sociala relationer och nätverk som är informella (familj, vänner, partners), men också i organiserade miljöer (stöd- eller vårdsystem, fritidsaktiviteter). Dessa relationer bidrog till känslor av acceptans och stöd som var centrala i upplevelser av tillhörighet. Inom sina erfarenheter av tillhörighet strävade individerna samtidigt efter en ökad självständighet. Det resulterade i en dualitet mellan tillhörighet och självständighet, som ibland hindrades, påverkades eller förstärktes av att ha en intellektuell funktionsnedsättning.

De samlade empiriska resultaten diskuteras genom användning av ekologisk systemteori, samt teorier om social exkludering och tillhörighet. Ekologisk systemteori gör det möjligt att organisera och identifiera olika miljöer och karakteristik hos individen men också interaktioner som uppstår mellan miljöerna och individen, vilket bidrar till en förståelse för att bli och vara NEED. Social exkludering och tillhörighet används för att närmare undersöka olika perspektiv på att inte ha en sysselsättning. Begreppen diskuteras finnas på ett kontinuum där individer i målgruppen kan uppleva olika grader av båda beroende på kontext och situation. Inom både social exkludering och tillhörighet, visar vissa av personer med intellektuell funktionsnedsättning ett aktivt val. Dessa individer motstår kategorisering genom att välja att inte delta i arenor eller stödsystem som förknippas med en intellektuell funktionsnedsättning. Som en slutsats visar denna avhandling att situationen för unga vuxna med intellektuell funktionsnedsättning som inte har en känd sysselsättning är ett komplext fenomen. För att förstå detta mer ingående måste många olika faktorer, interaktioner och erfarenheter beaktas. Det finns ett stort behov av att utveckla resurser och stöd som har en helhetssyn – men som även är individanpassade – för att främja ökat deltagande och förhindra att individer faller mellan stolarna.

Place, publisher, year, edition, pages
Halmstad: Halmstad University Press, 2020. , p. 133
Series
Halmstad University Dissertations ; 74
Keywords [en]
Intellectual disability, Not in Employment, Education or Daily activity (NEED), post-school occupations, ecological systems theory, social exclusion, belonging
Keywords [sv]
Intellektuell funktionsnedsättning, Not in Employment, Education or Daily activity (NEED), sysselsättning, systemteori, social exkludering, tillhörighet
National Category
Social Work
Identifiers
URN: urn:nbn:se:hh:diva-43260ISBN: 978-91-88749-56-7 (print)ISBN: 978-91-88749-57-4 (electronic)OAI: oai:DiVA.org:hh-43260DiVA, id: diva2:1475077
Public defence
2020-11-06, Bærtlingsalen (J101), hus J (Visionen), Kristian IV:s väg 3, Halmstad, 10:00 (English)
Opponent
Supervisors
Available from: 2020-10-14 Created: 2020-10-12 Last updated: 2021-05-19Bibliographically approved
List of papers
1. After upper secondary school: Young adults with intellectual disability not involved in employment, education or daily activity in Sweden
Open this publication in new window or tab >>After upper secondary school: Young adults with intellectual disability not involved in employment, education or daily activity in Sweden
2018 (English)In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 20, no 1, p. 50-61Article in journal (Refereed) Published
Abstract [en]

There is limited knowledge about young persons with intellectual disability who are Not in Employment, Education or Daily activity (NEED) in Sweden. The aim of the study was to explore the post-upper secondary school situation for persons with intellectual disability not involved in traditional occupations. A national database containing 2955 persons, representing 24.1% of the total (N=12,269) was used. The results revealed a heterogeneous group where financial support was common and few made use of disability services. Gender, municipality, programme type, financial support and disability services were significantly associated with not having an occupation as opposed to being in employment, education or daily activity. Time was a central factor, as the early years after upper secondary school appear to be an important period for changing NEED status. This is the first large scale study to describe these persons not involved in traditional occupations in Sweden and further research is required.

Place, publisher, year, edition, pages
Stockholm: Stockholm University Press, 2018
Keywords
Intellectual disability, post-school occupation, Not in Employment Education or Daily activity (NEED), Not in Employment Education or Training (NEET)
National Category
Social Work
Identifiers
urn:nbn:se:hh:diva-35036 (URN)10.16993/sjdr.43 (DOI)000433656600006 ()2-s2.0-85047931693 (Scopus ID)
Note

The study received financial support from Halmstad University and MISA AB, Stockholm, Sweden.

Available from: 2017-10-04 Created: 2017-10-04 Last updated: 2021-05-19Bibliographically approved
2. Young adults with intellectual disability who are not in employment, education, or daily activities: Family situation and its relation to occupational status
Open this publication in new window or tab >>Young adults with intellectual disability who are not in employment, education, or daily activities: Family situation and its relation to occupational status
2019 (English)In: Cogent Social Sciences, E-ISSN 2331-1886, Vol. 5, no 1Article in journal (Refereed) Published
Abstract [en]

Purpose: In the modern labour market entering and maintaining employment is challenging for youth in general. Young adults with intellectual disability face major difficulties in establishing an occupation. A substantial group of young adults with intellectual disability who are Not in Employment, Education or Daily activity (NEED) have been identified. The aim of this study is to describe and analyse the family situation for those who are NEED.

Materials and methods: A national database with 12,269 persons was used, where 24.1% (N = 2,955) of the total were NEED. Family situation in terms of civil status, having children, and living with one’s parents, along with background factors were examined.

Results: Family situation and background factors have significant associations with not having, as opposed to having, an occupation (employment, education, or daily activity), but differ for men and women. For example, partnerships and having children were only significant for women.

Conclusions: This study contributes to the multidimensionality in understanding young people with intellectual disability who are not participating in traditional occupations, where the family situation is an important aspect. This knowledge can contribute to future research and be useful in practice to develop holistic supports that increase participation in occupations.

Place, publisher, year, edition, pages
Abingdon: Cogent OA, 2019
Keywords
Intellectual disability, Not in EmploymentEducationor Training (NEET), Not in EmploymentEducationor Daily activity (NEED, )POST-school occupations, Family, Sweden
National Category
Social Work
Identifiers
urn:nbn:se:hh:diva-40254 (URN)10.1080/23311886.2019.1622484 (DOI)000476887600001 ()2-s2.0-85077850721 (Scopus ID)
Note

This work was supported by the Misa AB & Halmstad University

Available from: 2019-07-19 Created: 2019-07-19 Last updated: 2020-10-12Bibliographically approved
3. ‘Just Because One has Attended a Special Class Does Not Mean that One Isn’t Capable’: The Experiences of Becoming and Being Not Involved in Traditional Occupations for Young People with Intellectual Disability
Open this publication in new window or tab >>‘Just Because One has Attended a Special Class Does Not Mean that One Isn’t Capable’: The Experiences of Becoming and Being Not Involved in Traditional Occupations for Young People with Intellectual Disability
2020 (English)In: Nordic Social Work Research, ISSN 2156-857X, E-ISSN 2156-8588, Vol. 10, no 4, p. 330-342Article in journal (Refereed) Published
Abstract [en]

Young adults with intellectual disability face challenges in securing post-secondary school occupations. This can result in being Not in Employment, Education, or Daily activity (NEED). This qualitative interview study analyzes the subjective experiences of the process to becoming and being NEED. The analysis focuses on individual as well as structural factors, and how these are experienced in different arenas in society and in interactions with agencies. Interviews with 10 participants followed by thematic analysis were conducted. The results indicate that the process from secondary school to being outside of traditional occupations is not linear. Individual factors such as desires, abilities, and health problems, combined with structural factors of limited or unsuitable post-school occupations and challenges with formal support contribute to understanding people with intellectual disability who are NEED. The experiences of being NEED relate to social exclusion underlined with notions of normality and stigmatization of having an intellectual disability. © 2018 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

Place, publisher, year, edition, pages
Philadelphia, PA: Routledge, 2020
Keywords
Intellectual disability, Not in Employment, Education, or Daily activity (NEED), post-secondary school
National Category
Social Work
Identifiers
urn:nbn:se:hh:diva-38510 (URN)10.1080/2156857X.2018.1553734 (DOI)2-s2.0-85124748670 (Scopus ID)
Note

The study received financial support from Halmstad University and MISA AB, Stockholm, Sweden.

Available from: 2018-12-06 Created: 2018-12-06 Last updated: 2023-06-08Bibliographically approved
4. The Experience of Belonging of Young People with Intellectual Disability not Participating in Traditional Occupations
Open this publication in new window or tab >>The Experience of Belonging of Young People with Intellectual Disability not Participating in Traditional Occupations
2020 (English)Manuscript (preprint) (Other academic)
Abstract [en]

This study examines the experiences of social relationships, networks, and living situations of young people with intellectual disability who are not participating in traditional occupations, and how these relationships and networks are conditions for belonging. The target group is termed “NEED”, Not in Employment, Education or Daily activity. Semi-structured interviews with 10 participants were conducted. Through the use of thematic analysis, the findings show that the participants’ social networks consist of informal relationships and organized settings and activities, and these are central in the experience of belonging. These relationships are often highlighted as providing positive feelings related to a sense of belonging; while some relationships, with mothers and professionals in the support and service system, have an added practical function with everyday assistance. Simultaneously, young people are seeking greater independence, which at times influences and impedes belonging. Together the study illustrates the complexity and multidimensionality in the experience of belonging.

Keywords
Intellectual disability, Not in Employment, Education, or Daily activity (NEED), Social relationships, networks, belonging
National Category
Social Work
Identifiers
urn:nbn:se:hh:diva-43259 (URN)
Note

As manuscript in thesis / Som manuskript i avhandling

This work was supported by Misa AB and Halmstad University.

Available from: 2020-10-12 Created: 2020-10-12 Last updated: 2024-11-13Bibliographically approved

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