Autistic people have historically been described as incapable of developing a deeper sense of self-awareness, and autistic understandings of self-awareness have been largely disregarded. The aim of this study is to explore the way young autistic adults try to understand their functionality and who they are, or to develop their sense of self-awareness, in work and in private life contexts. In 12 qualitative interviews conducted with four autistic adults without learning difficulties, we identified a rich set of reflections on knowing and accepting oneself. The overarching theme of self-knowledge has three subthemes: learning from previous experiences, learning about oneself by securing the support of others, and understanding and accepting autistic functionality. The strategy of self-knowledge was used by these young adults to help them achieve functional lives in the work and private domains. Our results show that young autistic adults both actively explore and develop their self-awareness. We suggest that it is important for practitioners and employers working with autistic individuals to engage with their journeys of self-awareness as a vital part of understanding and supporting them.
In this article, we explore experiences of support and self-management amongst young autistic adults in the context of vocational support interventions in Sweden. We analyse how young autistic men use different strategies to manage their vocational work and the support they need to maintain, achieve and sustain their work performance. Data consist of eleven interviews with 4 autistic young adult men in different work environments where vocational support interventions are implemented to different degrees. One finding concludes that the interviewees are affected by and try to adapt to neurotypical norms and expectations about working life and adulthood. Although individualised coping strategies can be helpful, it is important for employers and formal support persons to understand and acknowledge that individual emotional and problem-solving coping strategies are demanding and need to be combined with adaptations in the working environment. Another finding concludes how work managers act as gatekeeper in the vocational support system the young autistic men aspire to access and in which they need to manage their work performance. Thus, social workers must provide structured and well-coordinated formal work support by both involving the autistic clients’ employers, work managers and informal networks.
Utifrån egna erfarenheter av deltagarnära forskning resonerar vi i kapitlet om forskningsetik och forskaretik baserat på olika etiska dilemman och överväganden vi mött, olika betydelser av god forskningsetik och god forskning. Vi reflekterar över hur vi som forskare kan utveckla ett särskilt etiskt förhållningssätt som präglas av närhet och samarbete i en strävan att skapa kunskap som är praktiknära och samhällsrelevant. Vi har valt att utgå från tre forskningsprojekt. Två av projekten kretsar kring barn och unga. Det tredje fokuserar på hyresgästers upplevelser av bostadsförnyelse och hur boende organiserar sig i frågor som rör hemmet och boendet. Mot slutet av kapitlet resonerar vi om hur forskare ständigt bör reflektera över etik, i förhållande till sin roll som forskare och sina forskningspraktiker. Här diskuterar vi även fördelar med deltagarnära forskning som förespråka rhandling, teori, reflektion och praktik i forskningen.
This article examines the role of a civil society organisation that offers parental support to migrant parents with regard to meanings of parenthood and citizenship. It is based on the results of an action research study of a civil society organisation. The material consists of notes from participatory work in a local centre for children, youth and their parents, and of interviews with professionals, a project manager of the local organisation, and a public servant and a social worker who both work for the district council. Additional material is taken from notes of study visits to organisations working with the same target group. The results highlight four central themes. The first two themes, difficult parents in a precarious place and a place with a future?, revolves around parental needs in relation to place, the suburb. The third theme, civic parenting practices, focuses on parenting practices as civic practices. The fourth theme, gendering parent citizens, discusses the gendered meanings of the parent citizen as both an object and an agent of integration.
This study examines how childhoods are constructed within the assessment process concerning respite care for children with disabilities in Sweden. The social workers need to take into consideration the needs of the child with disabilities as well as those of the parents and siblings. The application for respite care compels the social worker to prioritise needs, evaluate children’s development and define what constitutes a good childhood. One of the results of such a process is a construction of childhood for children with disabilities which contains a strong focus on practising and developing, whereas their siblings are perceived as needing relaxation and quality time with their parents. It matches the childhood sociological concepts of ‘becomings’ and ‘beings’, where children with disabilities are stressed as ‘becoming’ and continually needing to develop their skills.
I den här studien har barnperspektivet vid handläggning av korttidsvistelse enligt LSS studerats. Studien bygger på 88 sociala utredningar från tio kommuner, gruppintervju med LSS-handläggare och fem föräldraintervjuer.
Barnperspektiv kan definieras på flera sätt: barnets eget perspektiv, de vuxnas perspektiv på vad som är bäst för barn samt ett barnrättsperspektiv som utgår från barnkonventionens huvudprinciper.
Av de flesta akter framgår att LSS-handläggaren träffat barnet. Ett sådant möte kan innebära allt från att observera barnet i sin hemmiljö, till att informera eller att fråga om barnets uppfattning. Mötet i sig behöver inte medföra att barnet fått förutsättningar att uttrycka sina åsikter. I de fall barn och ungdomar inte bedöms som tillräckligt kompetenta att uttrycka sin åsikt, så ersätts deras egna perspektiv med vuxnas barnperspektiv.
I situationer där barn beskrivs som delaktiga i möten framgår det att både handläggare och föräldrar har ansträngt sig med att göra information begriplig så att barnet ska få möjlighet att förstå vad mötet handlar om samt att förbereda sig inför mötet.
Trots att LSS-handläggarna ska beakta barnperspektivet är det ibland svårt att förstå hur bedömningar utifrån barnets bästa har gjorts i varje enskilt fall.
This article scrutinizes children’s participation concerning the assessment process of respite care in Sweden. It is qualitative study based on 82 documents of application of respite care and a group interview with social workers. We use the participation model of Shier, which describes extent of participation as well as the mandate of the organization. Social workers try to inform the children and meet them. They also seek approval of respite care. However, children who don’t use spoken language and children who are seen as immature are not given adequate support to enable them to speak their voices. Besides, the participation is often restricted to say yes to respite care. There are hardly any traces of children’s reasons for being at respite care. This means an absence of knowledge concerning children’s views upon their own needs and problems.
The Act Concerning Support and Services to Persons with Certain Functional Impairments, in which the provision of personal assistance (PA) is included, came into force in 1994. It paved the way for strengthened rights for people with disabilities, in which the overall intention was to give disabled people equal opportunities and enable full participation in society.
This thesis explores adolescents’ and social workers’ perspectives on and experiences of personal assistance. The overall aim of this research was to gain empirical knowledge and a deeper understanding of young assistance users’ experiences of living with PA and the social workers’ experience of assessing children’s right to PA and other LSS interventions. In paper I, a grounded theory (GT) analysis showed that the adolescents’ main concern was to achieve normality, which was about doing rather than being normal. The findings underline and discuss the interconnectedness between the different enabling strategies adopted by the adolescents, and to a lesser extent discuss disabling barriers for which PA cannot compensate. In paper II the adolescents describe their experiences of the assessment process which precedes possible access to PA. The content analysis reveals that the adolescents’ participation was determined by the structure of the meetings, in which the assessments tools played a decisive part. The adolescents adapted their behaviour in response. Paper III is based on a phenomenological approach to social workers’ responses to children and young peoples’ ability to participate in meetings and decision making concerning their own support interventions. It reveals difficulties in grasping what participation should be and result in. In paper IV, a GT study, the emerging theory explains how case workers tried to maintain their professional integrity by adopting various strategies.
The synthesis of the four studies has resulted in a clarification of how the individual, organizational and societal levels interact through legislation and policy documents, meetings and norms to create certain processes and interactions between the different stakeholders. However, further research is necessary to explore the long-term effects of the current changes to Swedish LSS-legislation regarding both the professional conduct of the case workers responsible for assessing LSS interventions and the consequences of such decisions for assistance users and their families.
This qualitative study explores Swedish case workers experiences of decision making regarding disabled children's right to obtain assistance in their everyday life whereby they can live independently in the community. Data collection included seven focus-group interviews and 11 complementary individual interviews with case workers from different agencies responsible for decisions regardig access to personal assistance. Grounded theory methodology was used. Compromised professional integrity under shifting conditions emerged as a main concern and maintaing professional integrity was used as an approach to resolve it. The case workers are maintaining professional integrity by applying different strategies; struggling with division of responsibility, bureaucratizig, and justifying and protecting. The results indicate that present application of assessment criteria in combination with the utilization of precedent rulings has made it difficult for the case workers to make decisions that provide children access to assistance. Current practice raises questions about the case workers perspectives of professionalism.
Purpose: The purpose of the study was to explore how adolescents with disabilities experience everyday life with personal assistants.
Method: In this qualitative study, individual interviews were conducted at 35 occasions with 16 Swedish adolescents with disabilities, in the ages 16–21. Data were analyzed using grounded theory methodology.
Results: The adolescents' main concern was to achieve normality, which is about doing rather than being normal. They try to resolve this by assisted normality utilizing personal assistance. Assisted normality can be obtained by the existing relationship, the cooperation between the assistant and the adolescent and the situational placement of the assistant. Normality is obstructed by physical, social and psychological barriers.
Conclusion: This study is from the adolescents’ perspective and has implications for understanding the value of having access to personal assistance in order to achieve assisted normality and enable social interaction in everyday life.
Implications for Rehabilitation
The aim of this study was to gain a deeper understanding of Swedish social workers’ experience of disabled children’s participation, to discover in what ways their knowledge about impairment and disability, combined with legal literacy and local context influence children’s participation in formal meetings and decision making. Seven focus-group interviews were conducted with 35 municipal social workers from communities in different parts of Sweden. The phenomenological analysis resulted in the overarching theme of elusive participation, in which participation was described as difficult to grasp both in relation to what was supposed to be achieved and what it was meant to result in. Elusive participation entailed a discrepancy between policy and practice, norms and perception of normality, conflicting perspectives and needs, judgment of children’s abilities. These findings underline the importance of creating safe spaces in which social workers have the opportunity for critical reflections and shared discussions about social work practice.
In Sweden, support and service for people with disabilities is provided under the Swedish disability legislation, which has a clear focus on the individual’s right to a life like that of any other citizen and on promoting equality and participation in society. Nevertheless, having a physical impairment makes it clear that equal mental health care is not provided in practice. This becomes particularly salient when there is a need for mental health in-patient care. In this article, the aim is to explore our own experiences of epistemic injustice in relation to mental health care provision in a situation where one of us has a mobility impairment that require the presence of personal assistants in everyday life.
Critical personal narrative is applied to highlight the different, but intertwined experiences of a young female mental health user with a physical disability and her mother. Diary entrances, shared discussions and extracts from health care records are used to illustrate how epistemic injustice may occur in health care practices. In the analysis, we use Fricker’s concepts that relate to different aspects of epistemic injustice, to show how power is exerted.
Healthcare professionals’ inability to value and integrate patients experience-based knowledge into practice where the lack of a holistic perspective visualizes what happens when people do not fit into predefined categories. Instead of strengthening patients’ rights, health care professionals discredit patients’ and family members knowledge, and thereby giving themselves epistemic privilege. People with the combined experience of both disabilities and mental health issues are vulnerable to epistemic injustice and epistemic harm since they are commonly denied both epistemic credibility and authority.
Our results highlight the importance of counteracting resilient structures of social privilege and power and identifying and, in as far as possible, removing the mechanisms that exclude the epistemic resources of people with disabilities and their family members from being part of shared epistemic resources.
The aim of this study was to improve understanding of the experiences of adolescents with disabilities concerning meetings that affect their possibility to receive personal assistance in Sweden. Qualitative inductive content analysis was used to describe their experiences. Overall adolescents were found to be reluctant to participate in meetings. Two main approaches could be discerned – taking part and taking part by proxy. The adolescents who took part in meetings tried to adapt their self-presentation to fit with the social workers’ requirements by presenting their worst self, giving requested information, using support and raising their voices. The adolescents who choose to participate by proxy were either being involved or not being involved. Being involved implied involvement before and/or after the meeting. The meaning of participants’ strategies was examined through a social constructivist lens. The results indicate that ‘performing disability’ during the meetings is a prerequisite for obtaining personal assistance. In its current form adolescents’ participation is reduced to tokenism and this raises questions about how to implement a child perspective.
The paper explores how disabled girls with Personal Assistants (PA:s) in a Swedish context constitute themselves as subjects in relation to intersecting meanings of age, gender, space, time and disability. The results illuminate the importance of social spaces and social relationships for the girls’ forming their sense of selves. Similar to ablebodied girls, disabled girls’ transition into adulthood can be viewed as a yoyo-transitions, entering and exiting different adult positions several times. Unlike ablebodied girls, they enter adult positions not commonly associated with youths, such as work leadership positions in relation to adult employees, such as the adult PA. This implies that they to some extent manage their own process of becoming an adult. Our findings stress the importance of recognition and awareness of disabled girls transition to adulthood as different not pathological to nondisabled girls’, where consideration is taken both to individual needs and preferences of female assistance users.
Points of interest
In a participatory action research project, we emphasize experiences of collaboration between academic and community researchers by applying analytical autoethnography. The aim of the article is to describe the research process which involves both individual and collaborative processes, and to analyze challenges in relation to participation in the ongoing research process. We identified four themes: Start-up and initial challenges, Conditions and structural prerequisites for collaboration, Joint development of work methods and Power and role distribution. Our findings are presented in two separate analyses; a collaborative inductive analysis and an academic led theoretical analysis in which Arnstein’s ladder of participation and Fricker’s concept of epistemic injustice are utilized in order to scrutinize challenges related to different degrees of participation in the research process. The results demonstrate that shared hermeneutic resources are necessary for the mitigation of epistemic injustice and enablement of mutual learning processes, such as collective writing processes. The results also indicate that a full participation for community researchers in the entire research process was difficult to achieve, both in relation to structural resources such as allocated time, and in relation to perceptions of meaning- making aspects, for example, individual interests and contributions in terms of knowledge.
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.
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.
Yrket hälso- och sjukvårdskurator växte fram ur urbaniseringen vid förra sekelskiftet, men vilken betydelse urbaniseringen haft för kuratorsyrket har inte utforskats. I denna artikel undersöker vi hur kuratorns organisatoriska förutsättningar och professionella handlingsutrymme präglas av den urbana miljön. Tematisk analys genomfördes av individuella intervjuer och fokusgruppintervjuer med asylkuratorer och habiliteringskuratorer i Region Stockholm. Fyra teman framträdde: 1) Socialt arbete med urbaniseringsprocesser, 2) Globaliseringen och storstaden, 3) Effektivisering och handlingsutrymme samt 4) Storstadens många samverkansytor. En central slutsats är att den urbana miljön både kan innebära ett kraftigt begränsat handlingsutrymme, men också ge förutsättningar till ökat handlingsutrymme. Detta tycks bero på om styrning och utformning av uppdrag och arbetsuppgifter är framförhandlade utifrån patienters behov och utifrån kuratorsprofessionens egna villkor eller inte.