Background: Knowledge about the living conditions among people with intellectual disabilities (ID) is globally scarce. Even in countries with good access to registers, this is often partly due to the absence of a single, comprehensive, nationwide register of individuals with ID or the inability to identify all individuals with ID within existing registers. In Sweden, the Halmstad University Register on Pupils with ID (HURPID) was established to fill this gap. HURPID is based on the population that left the Swedish Upper Secondary School for pupils with ID (USSID) in 2001–2020. Most young people with ID in Sweden are expected to attend USSID. The aims of this paper were to describe the construction, structure, and content of HURPID, to validate the register, and to provide examples of what it has been used for.

Methods: Based on school leaving certificates or corresponding, personal identity number, gender, educational programme, municipality where the school was located, and graduation year were registered. HURPID has been linked with various registers in projects addressing research questions about the target group's living conditions.

Results: HURPID consists of 26,910 individuals (11,078 women, 15,832 men), born in 1973–2003. Through linkages, knowledge has been gained about occupational patterns, psychiatric comorbidity, mortality, substance use, criminality and victimisation.

Conclusions: HURPID demonstrates the highest completeness of individuals with ID of working age in Sweden. This makes it possible to follow the development of adolescents with ID over time. As one of the most extensive and comprehensive registers of individuals with ID in the world, it also forms a unique register internationally. © 2025 The Author(s). JCPP Advances published by John Wiley & Sons Ltd on behalf of Association for Child and Adolescent Mental Health.

Många personer med intellektuell funktionsnedsättning har sin sysselsättning i daglig verksamhet, som är en av insatserna i Lagen (1993:387) om stöd till service till vissa funktionshindrade (LSS). Trots att daglig verksamhet är den dominerande sysselsättningen för personer med intellektuell funktionsnedsättning, finns det begränsad kunskap och forskning. Denna rapport är en sammanfattning av ett postdoktorprojekt som genomfördes mellan 2022–2024 av Renee Luthra (Fil.dr. i hälsa och livsstil inriktning handikappvetenskap) vid Högskolan i Halmstad, tillsammans med forskargruppen bestående av Magnus Tideman (Projektledare, Professor i socialt arbete med inriktning funktionshinder) och Carin Staland Nyman (Med. dr i socialmedicin). Det övergripande syftet med forskningsprojektet var att öka kunskapen och förståelsen om daglig verksamhet. Detta ledde till att två studier genomfördes – en registerstudie och en intervjustudie.

Registerstudien: Syftet med registerstudien var att undersöka gruppen vuxna med intellektuell funktionsnedsättning som efter anpassad gymnasieskola deltar i daglig verksamhet, med fokus på karakteristik och longitudinella analyser, av rörelser mellan olika typer av sysselsättningar. I studien användes det nationella registret Halmstad University Register on Pupils with Intellectual Disability. Detta register har samkörts med två andra nationella register och består av 26 908 personer med intellektuell funktionsnedsättning, varav 13 128 individer (48,8 %) deltog i daglig verksamhet.

Resultatet visar att gruppen som deltog i daglig verksamhet bestod av något fler män än kvinnor. Många hade gått ett individuellt program i den anpassad gymnasieskola och analyserna visade att det fanns signifikant samband mellan flera bakgrundsfaktorer (kön, ålder, gymnasieprogram, och boendekommun) och deltagande i daglig verksamhet. Longitudinella analyser visade även att andelen personer i daglig verksamhet är relativt stabil över tid. Under en tioårsperiod hade dock ett antal personer övergått till att ha ett arbete (8.2%) eller till en situation där de inte hade någon känd sysselsättning (11.8%). Få individer lämnade daglig verksamhet för att studera vidare (under 1%).

Intervjustudien: Syftet med intervjustudien var att undersöka vilka upplevelser personer med intellektuell funktionsnedsättning hade av daglig verksamhet, och deras erfarenheter av eventuella övergångar mellan daglig verksamhet och andra sysselsättningar (arbete, utbildning och att inte ha en känd sysselsättning). Semistrukturerade intervjuer genomfördes med 15 personer med intellektuell funktionsnedsättning som deltog i daglig verksamhet.

Teman som framkom i resultatet var: autonomi, relationer med personal och andra deltagare i daglig verksamhet, stolthet över uppgifter, flexibilitet och stabilitet i upplevelserna av daglig verksamhet. Analyser av deltagarnas erfarenheter av övergångar mellan daglig verksamhet och andra sysselsättningar, illustrerade flera hinder för individen att söka och få ett arbete. Intresset för vidareutbildning var låg, samtidigt som majoriteten hade haft perioder utan en känd sysselsättning.

Analys av intervjumaterialet visade att deltagarna kunde delas in i två grupper, två typologier, som illustrerar att daglig verksamhet har olika betydelser och konsekvenser för olika personer. ”Nöjdhetsgruppen” var individer som var nöjda och tyckte om den dagliga verksamheten och upplevde den som en meningsfull och värdefull sysselsättning. För ”Mittemellangruppen” var daglig verksamhet ett mellansteg eller tillfällig sysselsättning, något att göra innan de kan gå vidare till ett lönearbete.  Även om det finns en önskan att lämna daglig verksamhet och få ett betalt jobb, uttryckte flera en oro över att förlora stabiliteten och/eller den försörjning som personer erhåller i daglig verksamhet.

Slutsatser: Resultaten från båda studierna kompletterar varandra och ger ny kunskap om daglig verksamhet. Tillsammans illustrerar de att daglig verksamhet fortsätter vara den vanligaste sysselsättningen för personer intellektuell funktionsnedsättning, samtidigt som det finns variationer i bakgrundsfaktorer, övergångar till andra sysselsättningar och i erfarenheter och upplevelser. Ett exempel på ny kunskap är att utflödet till arbete och till att ha ingen känd sysselsättning under en 10-årsperiod är betydligt större än tidigare känt. Daglig verksamhet är en meningsfull sysselsättning och passar många, men inte alla. Därför blir det viktigt att stödja individer utifrån deras olika behov och önskemål, oavsett om de är nöjda med sin dagliga verksamhet, eller om de vill prova en annan placering inom daglig verksamhet, eller att de i stället önskar att få en löneanställning på den öppna arbetsmarknaden.

In Sweden, day programs called Daily Activity are provided for people with intellectual disability with the objective of increasing meaningful activities and opportunities for employment. The aim of the study was to examine people with intellectual disability’s experiences of Daily Activity, as well as transitions between Daily Activity and other occupations (employment, education, and no occupation). Semi-structured interviews were conducted with 15 individuals with intellectual disability and were analyzed using thematic analysis. The results illustrate the importance of autonomy, relationships, taking pride in tasks, flexibility, and stability in Daily Activity. Transitions highlight barriers in employment, low interest in education, and periods of not having an occupation. The participants’ overall experiences of Daily Activity and transitions between occupations resulted in two typologies—The Content Group and The In-between Group. The findings are discussed using self-determination theory and emphasize the interaction between individuals and societal systems to support people in Daily Activity. © 2025 The Author(s).

Arbete och meningsfull sysselsättning är viktigt för människors inkludering i samhället och för trygga livsvillkor och utveckling. Att vara en del av arbetslivet anses vara avgörande för unga och deras etablering i vuxenlivet. Det är väl känt att deltagande i arbetslivet för den enskilde i ett livsloppsperspektiv generellt visar på ett positivt samband med faktorer såsom ekonomisk situation, social status och hälsa. För samhället är tillgången till människors olika kompetenser och deras möjlighet till självförsörjande angelägen. Alternativet till försörjning via eget förvärvsarbete är i många fall ersättning från socialförsäkringen. En grupp som historiskt sett stått, och fortfarande i betydande utsträckning står, utanför den öppna arbetsmarknaden är personer med intellektuell funktionsnedsättning (IF). Andelen personer med IF i befolkningen är knappt två procent, varav tre fjärdedelar bedöms ha lindrig funktionsnedsättning. Forskning har dock visat att en relativt liten andel av unga vuxna med IF återfinns på den öppna arbetsmarknaden men att många fler i gruppen skulle önska att ha ett förvärvsarbete, om det fanns bättre möjligheter och förutsättningar. Kunskapen om vilka faktorer som är av betydelse för att unga med IF ska komma in på arbetsmarknaden samt behålla arbetet, dvs få en varaktig och hållbar arbetsmarknadsanknytning, är mycket liten. Syftet med detta projekt var mot denna bakgrund att, utifrån studier som fokuserar på personer med IF som arbetar, identifiera faktorer som kan vara av betydelse för att främja en hållbar anknytning till arbetsmarknaden.

There is limited knowledge regarding people with intellectual disability and their occupations in Sweden. The aim of the study was to examine young adults with intellectual disability who after secondary school participate in disability day programs (daily activity), with a focus on characteristics and longitudinal analyses of movements between occupations. The study used a national register of 26,908 people with intellectual disability, of which 13,128 individuals (48.8%) participated in daily activity. The group had slightly more men than women, many had attended individual programs in school, and significant associations were found between background factors and participating in daily activity. Proportions in daily activity remained stable over time; however, some individuals transitioned to employment or no known occupation. The study presents national and longitudinal understanding, highlighting the dominance of daily activity as an occupation. Further research is needed to increase knowledge on meaningful occupations for people with intellectual disability. © The Author(s) 2024.

Background: Work is vital to people’s health and quality of life. The Convention on the Rights of Persons with Disabilities affirms the right to work on an equal basis with others including an opportunity to earn a living by work, but evidence shows that people with intellectual disability (ID) are at greater risk of unemployment and social exclusion. Due to the lack of comprehensive data for longitudinal follow-ups, information on long-term labor market participation (LLMP) in people with ID is scarce. This study aimed to investigate factors of importance for LLMP in individuals with ID in Sweden.

Methods: The study was based on data from the upper secondary school for pupils with ID between 2001 and 2020 (N¼26,905) and from the longitudinal integrated database for health insurance and labor market studies. A sample of gainfully employed in 2011 (n¼2,719), was followed with respect to LLMP until 2020. Odds ratios (ORs) with 95% confidence intervals (CI) for associations between educational, sociodemographic, and work factors and LLMP (i.e. gainful employment throughout the follow-up), were estimated stratified on sex.

Results: LLMP was twice as likely in men compared with women, OR 2.06 (1.78-2.58) as was work in the private sector. Factors of significance for LLMP in men and women alike were: completed national education program, OR 3.40 (3.06-3.86) and OR 2.91 (2.403.54), parents’ education; compulsory school in mothers’, OR 1.22 (1.06-1.41) and 1.24 (1.00-1.55) and in fathers’ OR 1.35 (1.17-1.56) and 1.49 (1.20-1.85), while municipality of residence was significant only in men, OR 1.30 (1.10-1.56).

Conclusions: Public health prevention for disadvantaged groups requires accurate and up-to-date knowledge. Using unique register-based data, this is the first study on LLMP in people with ID in Sweden. Knowledge on what social determinants may strengthen LLMP is important since limited LLMP increases the risk of missing out on health benefits that employment may offer.

Key messages:

• There was a significant gender difference in long-term labor market participation in people with intellectual disability in Sweden.

• There is a need for increased knowledge on what social determinants may strengthen long-term labor market participation in people with intellectual disability.

Background: To combat discrimination, the Convention on the Rights of Persons with Disabilities mandates equal work opportunities. Individuals with intellectual disabilities engage in work spanning from competitive jobs to vocational activities. Little is known about their occupational patterns, and knowledge about how these evolve over time is lacking. This study aimed to address these gaps, using longitudinal and cross-sectional approaches.

Method: Through record linkage of Swedish population-based registers, data on intellectual disability and occupational status in 2011, 2013, 2015, 2017, and 2020 were obtained. Two cohorts were examined. Cohort 1 (individuals who left Upper Secondary School for pupils with Intellectual Disability (USSID) in 2001–2011, n = 11 704) was used to study changes in different occupational groups (daily activity, work, studies, and unknown) between 2011 and 2020. Cohort 2 (individuals who left USSID in 2001–2020, n = 26 424) was used to describe occupational patterns in 2020.

Findings: By 2020, the proportion of cohort 1 individuals in daily activity was significantly lower compared to 2011. The proportion of working individuals increased each year until 2017. Simultaneously, the proportion of students decreased. The proportion of individuals with an unknown occupation decreased until 2015. Nearly half of the cohort 2 individuals were engaged in daily activity, approximately a third were working, about 4% were studying, and around one-sixth had no known occupation in 2020.

Conclusions: Minor, yet significant, shifts in proportions were evident across all years within all cohort 1 groups compared to baseline. A positive trend emerged with a steadily increasing proportion of working individuals until 2017, suggesting that as time progresses, more individuals seem to enter the workforce. The findings can serve as a foundation for informed decisions in the pursuit of equal opportunities. However, further research is required to understand the underlying factors behind the findings. © 2024 John Wiley & Sons and MENCAP.

Background: Evidence for substance use-related problems in individuals with mild intellectual disability is sparse and mainly limited to selected psychiatric populations. We evaluated the risk of substance use-related problems in individuals with mild intellectual disability compared to the general population. Additionally, we have performed secondary sibling comparison analyses to account for familial confounding.

Methods: We conducted a population-based cohort study of individuals born in Sweden between 1973 and 2003. A total of 18,307 individuals with mild intellectual disability were compared to 915,350 reference individuals from the general population and 18,996 full siblings of individuals with mild intellectual disability. Information on mild intellectual disability and substance use-related problems was obtained from several Swedish national and regional school and healthcare registers. Substance use-related problems were measured via corresponding diagnostic and legal codes and included alcohol use disorder, drug use disorder, alcohol-related somatic disease, conviction for a substance-related crime, and substance-related death.

Results: Individuals with mild intellectual disability had a higher risk of any substance use-related problem compared to the general population (HR, 1.81; 95% CI, 1.72–1.91), both in males (HR, 1.76; 95% CI, 1.65–1.89) and females (HR, 1.89; 95% CI, 1.74–2.05). The risks of substance use-related problems were particularly elevated among individuals with mild intellectual disability and psychiatric comorbidities (HR, 2.21–8.24). The associations were attenuated in the sibling comparison models.

Conclusions: Individuals with mild intellectual disability, especially those with psychiatric comorbidity, are at an elevated risk of substance use-related problems. Familial factors shared by full siblings contribute considerably to the association between mild intellectual disability and substance use-related problems. © 2024 The Authors. JCPP Advances published by John Wiley & Sons Ltd on behalf of Association for Child and Adolescent Mental Health.

Background Intellectual disability (ID) is associated with violent and sexual offending and victimization, but the importance of neuropsychiatric comorbidity and severity of disability remains unclear. Methods In a register-based cohort study of people born in Sweden 1980-1991 (n = 1 232 564), we investigated associations of mild and moderate/severe ID with any, violent and sexual crimes, and with assault victimization, stratified by comorbid autism and attention deficit hyperactivity disorder (ADHD). We defined ID by attendance at a special school or registered diagnosis and obtained data on criminal convictions and injuries or deaths due to assaults from nationwide registers until end of 2013. Results Compared to people without ID, autism or ADHD, men and women with mild or moderate/severe ID and comorbid ADHD had elevated risks of violent crimes [range of hazard ratios (HRs) 4.4-10.4] and assault victimization (HRs 2.0-7.7). Women with mild ID without comorbidities or with comorbid autism also had elevated risks of violent crimes and victimization (HRs 1.8-4.6) compared to women without ID, autism or ADHD. The relative risks of sexual offending and victimization were elevated in men and women with ID without comorbidities (HRs 2.6-12.7). The highest risks for sexual offending in men (HRs 9.4-11.0) and for sexual assault victimization in women (HRs 11.0-17.1) related to ID and comorbid ADHD. Conclusions The elevated risk of violent offending and assault victimization in people with ID is largely explained by comorbid ADHD, whereas ID is independently associated with sexual crimes and victimization, even though absolute risks are low. Copyright © The Author(s), 2022. Published by Cambridge University Press.