| 1. |
- Börjeson, Martin, 1959-, et al.
(författare)
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Leder individuella stöd till delaktighet? : En kunskapskartläggning
- 2024
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Rapport (övrigt vetenskapligt/konstnärligt)abstract
- Rapporten redovisar en kunskapskartläggning som är första delen i ett flerårigt forskningsprojekt som med olika metoder belyser frågan om individuella stödinsatser leder till ökad delaktighet för personer med funktionsnedsättning. Kartläggningen pekar på behov av fördjupande studier och i den registerstudie och de två intervjustudier som utgör forskningsprojektets andra delar är ambitionen att ytterligare fördjupa dessa perspektiv.
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| 2. |
- Ahlström, Gerd, et al.
(författare)
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Ageing people with intellectual disabilities and the association between frailty factors and social care : A Swedish national register study
- 2022
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Ingår i: Journal of Intellectual Disabilities. - Thousand Oaks, CA : Sage Publications. - 1744-6295 .- 1744-6309. ; 26:4, s. 900-918
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to describe the social care provided for different age groups of people with intellectual disability, 55 years or above, and to investigate the association between such care and frailty factors for those with diagnosed level of intellectual disabilities. Descriptive and logistic regression analyses were used. Commonest forms of social care among the 7936 people were Residential care, Daily activities and Contact person. Home help and Security alarm increased with age. The frailty factors significantly associated with increased social care were age, polypharmacy and severe levels of intellectual disabilities. Persons most likely to be in residential care were in the age group 65–79 with polypharmacy and severe disability. The results indicate a need for further research of how frailty factors are considered in social care and longstanding medication, especially then severe intellectual disability hinders communication. A national strategic plan for preventive interventions should be developed to ensure the best possible healthy ageing. © The Author(s) 2021.
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| 3. |
- Arvidsson, Jessica, 1982-, et al.
(författare)
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Sysselsättning för unga med intellektuell funktionsnedsättning – betydelsen av föräldrars utbildningsnivå och geografiska härkomst
- 2020
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Ingår i: Socialvetenskaplig tidskrift. - Lund : Förbundet för forskning i socialt arbete. - 1104-1420 .- 2003-5624. ; 27:1, s. 25-49
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Tidskriftsartikel (refereegranskat)abstract
- Studien analyserar sambanden mellan sysselsättning för unga vuxna med intellektuell funktionsnedsättning som gått i gymnasiesärskolan och deras sociala bakgrund, mätt som föräldrarnas utbildningsnivå och geografiska härkomst. Den här registerstudien baseras på Halmstad university register on pupils with intellectual disabilities (HURPID), Longitudinell integrationsdatabas för arbetsmarknads- och sjukförsäkringsstudier (LISA) samt LSS-registret. Studien omfattar 12 269 unga med intellektuell funktionsnedsättning som gick ut gymnasiesärskolan mellan 2001 och 2011. De samband som studeras analyseras genom multipla logistiska regressioner. Resultaten visar att föräldrars utbildningsnivå har viss betydelse för före detta gymnasiesärskoleelevers sysselsättning. Barn till högutbildade föräldrar har med större sannolikhet en sysselsättning inom daglig verksamhet och barn till lågutbildade föräldrar har med större sannolikhet ett förvärvsarbete. Sannolikheten för att ha någon av sysselsättningskategorierna daglig verksamhet eller förvärvsarbete är lägst bland barn till föräldrar som är födda i länder utanför Norden. Högutbildade föräldrar antas ha en högre grad av den ”välfärdskompetens” som krävs för att hantera dagens välfärdssystem och härigenom kunna påverka de ungas möjligheter att få insatser likt daglig verksamhet. Lågutbildade föräldrar antas ha egna erfarenheter av, och kontakter med, arbetsplatser där det finns arbetsuppgifter utan (eller med låga) formella kompetenskrav. Samhällets kunskaper och medvetenhet om den sociala bakgrundens betydelse för efter(sär)gymnasial sysselsättning bland unga med intellektuell funktionsnedsättning behöver öka. Detta i syfte att bättre möta varierande individuella förutsättningar och främja etablering i arbetslivet för fler unga vuxna med intellektuell funktionsnedsättning vid övergången från skoltid till arbetsliv.
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| 4. |
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| 5. |
- Hirvikoski, Tatja, et al.
(författare)
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Association of Intellectual Disability with All-Cause and Cause-Specific Mortality in Sweden
- 2021
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Ingår i: JAMA Network Open. - : American Medical Association. - 2574-3805. ; 4:6
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Tidskriftsartikel (refereegranskat)abstract
- © 2021 American Medical Association. All rights reserved.Importance: Knowledge of the health challenges and mortality in people with intellectual disability (ID) should guide health policies and practices in contemporary society. Objective: To examine premature mortality in individuals with ID. Design, Setting, and Participants: This population-based longitudinal cohort study obtained data from several national health care, education, and population registers in Sweden. Two registers were used to identify individuals with ID: the National Patient Register and the Halmstad University Register on Pupils With Intellectual Disability. Two cohorts were created: cohort 1 comprised young adults (born between 1980 and 1991) with mild ID, and cohort 2 comprised individuals (born between 1932 and 2013) with mild ID or moderate to profound ID; each cohort had matched reference cohorts. Data analyses were conducted between June 1, 2020, and March 31, 2021. Exposures: Mild or moderate to profound ID. Main Outcomes and Measures: The primary outcome was overall (all-cause) mortality, and the secondary outcomes were cause-specific mortality and potentially avoidable mortality. Results: Cohort 1 included 13 541 young adults with mild ID (mean [SD] age at death, 24.53 [3.66] years; 7826 men [57.8%]), and its matched reference cohort consisted of 135410 individuals. Cohort 2 included 24059 individuals with mild ID (mean [SD] age at death, 52.01 [16.88] years; 13649 male individuals [56.7%]) and 26602 individuals with moderate to profound ID (mean [SD] age at death, 42.16 [21.68] years; 15338 male individuals [57.7%]); its matched reference cohorts consisted of 240590 individuals with mild ID and 266020 with moderate to profound ID. Young adults with mild ID had increased overall mortality risk compared with the matched reference cohort (odds ratio [OR], 2.86; 95% CI, 2.33-3.50), specifically excess mortality in neoplasms (OR, 3.58; 95% CI, 2.02-6.35), diseases of the nervous system (OR, 40.00; 95% CI, 18.43-86.80) and circulatory system (OR, 9.24; 95% CI, 4.76-17.95). Among deaths that were amenable to health care (OR, 7.75; 95% CI, 4.85-12.39), 55% were attributed to epilepsy. In cohort 2, increased risk of overall mortality was observed among both individuals with mild ID (OR, 6.21; 95% CI, 5.79-6.66) and moderate to profound ID (OR, 13.15; 95% CI, 12.52-13.81) compared with the matched reference cohorts. Those with moderate to profound ID had a higher risk in several cause-of-death categories compared with those with mild ID or the matched reference cohort. Adjustment for epilepsy and congenital malformations attenuated the associations. The relative risk of premature death was higher in women (OR, 6.23; 95% CI, 4.42-8.79) than in men (OR, 1.99; 95% CI, 1.53-2.60), but the absolute risk of mortality was similar (0.9% for women vs 0.9% for men). Conclusions and Relevance: This study found excess premature mortality and high risk of deaths with causes that were potentially amenable to health care intervention among people with ID. This finding suggests that this patient population faces persistent health challenges and inequality in health care encounters..
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| 6. |
- Holmqvist, Anna, et al.
(författare)
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Being represented by others due to diminished decision capacity : a review of research literature
- 2023
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Ingår i: Nordic Social Work Research. - 2156-857X .- 2156-8588. ; 13:3, s. 445-459
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Forskningsöversikt (refereegranskat)abstract
- In social work, when a person needs to be supported or represented by another – be it voluntarily or by compulsion, permanently or for a limited time – questions on autonomy, integrity, and rights are raised. In particular, representation has implications for the relationship between the person being represented, the representative, and the social worker or service provider. While legal reforms on support and representation have been performed in the Nordic countries the last decade, the views from those being represented, i.e. their needs and wishes on different forms of representation, have not been prominent. Using this as a starting point, this literature review explored previous research on experiences of people represented by others, e.g., people with intellectual disability, people with mental illness, and children needing representation by a third party The literature review encompassed relevant studies using qualitative, quantitative, and mixed methods, and a range of policy and legal areas. Four databases were used in the search process (Academic Search Complete, ASSIA, SocIndex, and Sociological Abstracts). Based on inclusion criteria, eight articles were included in this review, encompassing experiences of people with intellectual disability, people with mental illness, and children needing representation by a third party. Two recurrent themes relevant for social work were identified: the balance between protecting and violating rights, and the importance of lasting and trusting relationships between the person being represented and the person representing. The review revealed a need for more social work research, not least from a Nordic perspective, reflecting the experiences of people being represented.
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| 7. |
- Hultman, Lill, et al.
(författare)
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‘A Limited Guardian Should First and Foremost Get to Know the Person He Helps’ : Experiences of Having a Limited Guardian from the Perspective of Adults with Intellectual Disability
- 2022
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Ingår i: Scandinavian Journal of Disability Research. - : Stockholm University Press. - 1501-7419 .- 1745-3011. ; 24:1, s. 288-301
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Tidskriftsartikel (refereegranskat)abstract
- One goal with the UN Convention on the Rights of Persons with Disabilities is ensuring that persons with disabilities have the right to support in reaching and acting upon decisions. The aim of this pilot study was to explore how adults with intellectual disability describe their experiences of receiving support and being represented by a limited guardian. Two overall themes emerged from eight qualitative individual semi-structured interviews: Indispensable and valuable support and Mismanagement of the assignment. Our findings showed that limited guardianship is more complex than it may initially seem due to overlaps between protecting rights, ensuring support for the person, and managing financial matters. Mutual trust and the guardian’s ability to listen and be open to the client’s changing needs reduced the risk of the client being misrepresented or receiving insufficient support. To support assisted decision-making, limited guardians must develop their pedagogical skills and gain knowledge about intellectual disability.
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| 8. |
- Hultman, Lill, et al.
(författare)
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Brukarinflytande i daglig verksamhet och gruppboende : Ett pilotprojekt om BIKVA och Qualid i LSS-verksamheter
- 2024
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Rapport (övrigt vetenskapligt/konstnärligt)abstract
- Personer med intellektuell funktionsnedsättning är ofta i behov av stöd under hela livet. För att kunna leva ett gott och meningsfullt liv krävs adekvat stöd och det är rimligt att de som får stödet har inflytande över det. På individuell nivå sker detta på olika sätt men det bör också finnas möjligheter för kollektivt inflytande, tex för alla som bor på gruppbostad. På fem LSS-verksamheter har de personer som deltar i verksamheterna och personalen som arbetar med brukarna medverkat i samtal enligt den brukarorienterade BIKVA (Brukarinddragelse I KVAlitetsvurdering) -modellen. Som ett komplement till BIKVA genomfördes Qualid (Quality of Life in Late-Stage Dementia scale) -skattningar på den verksamhet som vänder sig till vuxna personer med de mest omfattande funktionsnedsättningarna. Sammanfattningsvis är erfarenheten att BIKVA-samtal fungerar väl för att på ett strukturerat sätt samla in brukares erfarenheter och synpunkter. För de brukare som har mycket omfattande funktionsnedsättning kan BIKVA-samtal föras enskilt och/eller i kombination med andra källor för inhämtande av synpunkter. En sådan källa kan vara en utvecklad version av Qualid. Resultaten av pilotprojektet kan användas som en inspiration för att arbeta med och utveckla former för ett strukturerat brukarinflytande. Genom att vetenskapligt studera och följa utvecklingen kan arbetet bidra till ett bättre underlag för en mer evidensbaserad praktik inom funktionshinderfältet.Projektet har genomförts i samarbete med Bräcke Diakoni. Fil. dr. Lill Hultman har varit ansvarig för det empiriska arbetet och analysen av resultat och har tillsammans med projektansvarig, professor Magnus Tideman, sammanställt rapporten. Båda författarna är verksamma på Institutionen för socialvetenskap på Marie Cederschiöld Högskola.
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| 9. |
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| 10. |
- Khemiri, Lotfi, et al.
(författare)
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Parental substance use disorder and risk of intellectual disability in offspring in Sweden : a national register study
- 2023
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Ingår i: eClinicalMedicine. - London : Elsevier. - 2589-5370. ; 63
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Tidskriftsartikel (refereegranskat)abstract
- Background: Intellectual disability (ID) is a disorder with unknown aetiology in many cases. Maternal alcohol use is a known risk factor for ID, but less is known about the importance of maternal and paternal substance use disorder (SUD) and risk of ID in offspring.Methods: Data from multiple nationwide registers were used to create a cohort of children born from January 01, 1978 to December 31, 2002. All participants were born in Sweden, had available parental identification information and did not emigrate or die before age 12 (n = 1,940,820). Logistic regression modelling was performed with exposure defined as having a parent who received any SUD diagnosis, including alcohol use disorder (AUD) and drug use disorder (DUD). The outcome was registration of diagnosis of any form of ID. First, we analysed the risk of ID if parental SUD was registered prior to childbirth with stepwise adjustment of multiple covariates. Second, the effect of timing of SUD diagnosis in relation to childbirth was analysed.Findings: Of 37,410 offspring with parental SUD registered prior to birth, 3.0% (n = 1110) had any form of ID compared to 1.2% (n = 23,168) of those 1,903,410 individuals without parental SUD prior birth. Parental SUD prior birth was associated with an increased risk of any form of ID (Odds Ratio [OR]: 2.3 [2.2-2.5]), with ORs similar for maternal (OR: 2.3 [2.1-2.5]) and paternal SUD (OR: 2.3 [2.1-2.5]). These ORs were reduced but remained statistically significant after adjusting for parental education, migration, psychiatric comorbidity, and co-parent SUD (OR parental SUD: 1.6 [1.5-1.8]; OR maternal SUD: 1.4 [1.2-1.5]; OR paternal SUD: 1.6 [1.5-1.7]). Parental SUD was associated with increased risk of ID in offspring irrespective of timing of diagnosis, but if mothers or fathers were diagnosed with AUD during pregnancy (OR maternal AUD: 5.0 [3.1-8.2]; OR paternal AUD: 2.8 [2.2-3.6]), the risk was significantly greater than if the AUD diagnosis was first registered after childbirth (OR maternal AUD: 1.9 [1.8-2.0]; OR paternal AUD: 1.6 [1.6-1.7]).Interpretation: Both paternal and maternal SUD were associated with an increased risk of ID in offspring, with greatest risk observed when AUD was diagnosed during pregnancy. Possible mechanisms may involve shared genetic and environmental factors, including toxic effects from alcohol intake. These findings have clinical implications in suggesting that parental SUD in either parent represents a possibly modifiable risk factor to consider when developing prevention, diagnostics and treatment programs for children with ID.
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