Children’s invisibility, non-participation or limited participation can be associated with social... more Children’s invisibility, non-participation or limited participation can be associated with social workers’ experiences of losing focus of the child in their work, while at the same time navigating organisational and legal demands where a child perspective is strongly promoted. This article sheds light on social workers’ experiences of working with a child perspective and with children’s participation. Six in-depth interviews were conducted with professionals from social services and ngo s and from different child welfare services in Sweden. Our findings indicate that losing focus of the child is a common phenomenon that relates to the dominance of adult-centred practice and that child-centred methods need to be developed. Social workers from ngo s described having better opportunities for working in a child-centred way. Losing focus of the child mirrors the subordinated position of child-centred practice, proving that a child perspective and children’s participation are still inadeq...
Literature on attention deficit hyperactivity disorder (ADHD) has historically come from a cognit... more Literature on attention deficit hyperactivity disorder (ADHD) has historically come from a cognitive deficit approach and lacked community authorship. In contrast, this article utilises a neurodiversity framework to explore ADHD as a cognitive difference through ADHDers’ experiences. Specifically, here we analyse collective autoethnographic writings from neurodivergent academic researchers writing to one other about their experiences of intensity and variable attention or interest-based attention. Through the process of collective writing, we started to rename and restory our experiences, which has enabled us to understand intensity and variable attention as a valuable facet of human diversity, with both strengths and challenges. This project offers an example of how community-based research can elucidate individual experiences as ADHD/AuDHD researchers, facilitate exploration of varied experiences with intensity and attention and increase self-awareness and ability to give and rece...
-en autoetnografisk studie om en gemensam forskningsprocess 'As a community researcher, you get t... more -en autoetnografisk studie om en gemensam forskningsprocess 'As a community researcher, you get to make decisions in the research project' -an autoethnographic study about a joint research process 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 contributionsin terms of knowledge.
In Sweden, support and service for people with disabilities is provided under the Swedish disabil... more 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 epi...
Local protests against unwanted welfare activities and treatment institutions - so called NIMBY p... more Local protests against unwanted welfare activities and treatment institutions - so called NIMBY protests (Not In My Back Yard) - have mostly been limited to hypothetical situations or to single case studies. This study however, reports on actual experiences of neighbor reactions in a representative sample of 867 institutions for residence and care in Sweden. It searches for patterns in these reactions, for predictors among client, institutional as well as community factors and for the understanding of the further process after the initial problems. 32% of the responding institutions report at least some negative reactions, including18% that could be described as Nimby reactions. Nimby reactions last longer and involve more people than less articulated community worries. The expressed fears include mostly feelings of insecurity in general, increase of damages and criminal offences, decrease in neighboring estate values and increase in distribution of alcohol and drugs. The strongest ...
Autistic people have historically been described as incapable of developing a deeper sense of sel... more 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-aw...
In this article, we explore experiences of support and self-management amongst young autistic adu... more 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 ...
This qualitative study explores Swedish case workers experiences of decision making regarding dis... more 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 t...
The Act Concerning Support and Services to Persons with Certain Functional Impairments, in which ... more 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 article examines the role of a civil society organisation that offers parental support to mi... more 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. ABSTRAKT Syftet med denna artikel är att undersöka en civilsamhällsorganisations roll som erbjuder föräldrastöd för migrerade föräldrar i förhållande till betydelse av föräldraskap och medborgarskap. Artikeln är baserad på resultaten från en aktionsforskningsstudie i en frivilligorganisation. Materialet består av anteckningar från deltagande arbete i en lokal organisation för barn, ungdomar och deras föräldrar samt intervjuer med professionella; projektledaren för den lokala organisationen samt en offentlig anställd och en socialarbetare som båda arbetar inom förvaltningen. Materialet består också av anteckningar från studiebesök till organisationer med samma målgrupp. Resultaten visar fyra empiriska teman som från olika vinklar undersöker de yrkesverksammas perspektiv på medborgarskapets olika uppgifter med betoning på de yrkesverksammas roll att lära ut betydelsen av ett aktivt medborgarskap medan medborgarna ska vara villiga, passiva och lärande. Centralt är
This study examines how childhoods are constructed within the assessment process concerning respi... more 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. ABSTRAKT Studien undersöker barndomskonstruktioner inom handläggningsprocessen för korttidsvistelse enligt LSS. I denna process behöver socialarbetarna väga samman behoven avseende barnet med funktionsnedsättning, föräldrar och syskon. Socialarbetaren måste prioritera behov, utvärdera barns utveckling och definiera vad som utgör en god barndom. Ett av resultaten är att barndomskonstruktioner för barn med funktionsnedsättning fokuserar på att öva och utvecklas till skillnad från syskonen som uppfattas vara i behov av avkoppling och kvalitetstid med sina föräldrar. Konstruktionerna överensstämmer med de barndomssociologiska begrepp "beings" och "becomings" där barn med funktionsnedsättningar är "becomings" i ständigt behov av att utveckla sina färdigheter.
Children’s invisibility, non-participation or limited participation can be associated with social... more Children’s invisibility, non-participation or limited participation can be associated with social workers’ experiences of losing focus of the child in their work, while at the same time navigating organisational and legal demands where a child perspective is strongly promoted. This article sheds light on social workers’ experiences of working with a child perspective and with children’s participation. Six in-depth interviews were conducted with professionals from social services and ngo s and from different child welfare services in Sweden. Our findings indicate that losing focus of the child is a common phenomenon that relates to the dominance of adult-centred practice and that child-centred methods need to be developed. Social workers from ngo s described having better opportunities for working in a child-centred way. Losing focus of the child mirrors the subordinated position of child-centred practice, proving that a child perspective and children’s participation are still inadeq...
Literature on attention deficit hyperactivity disorder (ADHD) has historically come from a cognit... more Literature on attention deficit hyperactivity disorder (ADHD) has historically come from a cognitive deficit approach and lacked community authorship. In contrast, this article utilises a neurodiversity framework to explore ADHD as a cognitive difference through ADHDers’ experiences. Specifically, here we analyse collective autoethnographic writings from neurodivergent academic researchers writing to one other about their experiences of intensity and variable attention or interest-based attention. Through the process of collective writing, we started to rename and restory our experiences, which has enabled us to understand intensity and variable attention as a valuable facet of human diversity, with both strengths and challenges. This project offers an example of how community-based research can elucidate individual experiences as ADHD/AuDHD researchers, facilitate exploration of varied experiences with intensity and attention and increase self-awareness and ability to give and rece...
-en autoetnografisk studie om en gemensam forskningsprocess 'As a community researcher, you get t... more -en autoetnografisk studie om en gemensam forskningsprocess 'As a community researcher, you get to make decisions in the research project' -an autoethnographic study about a joint research process 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 contributionsin terms of knowledge.
In Sweden, support and service for people with disabilities is provided under the Swedish disabil... more 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 epi...
Local protests against unwanted welfare activities and treatment institutions - so called NIMBY p... more Local protests against unwanted welfare activities and treatment institutions - so called NIMBY protests (Not In My Back Yard) - have mostly been limited to hypothetical situations or to single case studies. This study however, reports on actual experiences of neighbor reactions in a representative sample of 867 institutions for residence and care in Sweden. It searches for patterns in these reactions, for predictors among client, institutional as well as community factors and for the understanding of the further process after the initial problems. 32% of the responding institutions report at least some negative reactions, including18% that could be described as Nimby reactions. Nimby reactions last longer and involve more people than less articulated community worries. The expressed fears include mostly feelings of insecurity in general, increase of damages and criminal offences, decrease in neighboring estate values and increase in distribution of alcohol and drugs. The strongest ...
Autistic people have historically been described as incapable of developing a deeper sense of sel... more 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-aw...
In this article, we explore experiences of support and self-management amongst young autistic adu... more 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 ...
This qualitative study explores Swedish case workers experiences of decision making regarding dis... more 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 t...
The Act Concerning Support and Services to Persons with Certain Functional Impairments, in which ... more 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 article examines the role of a civil society organisation that offers parental support to mi... more 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. ABSTRAKT Syftet med denna artikel är att undersöka en civilsamhällsorganisations roll som erbjuder föräldrastöd för migrerade föräldrar i förhållande till betydelse av föräldraskap och medborgarskap. Artikeln är baserad på resultaten från en aktionsforskningsstudie i en frivilligorganisation. Materialet består av anteckningar från deltagande arbete i en lokal organisation för barn, ungdomar och deras föräldrar samt intervjuer med professionella; projektledaren för den lokala organisationen samt en offentlig anställd och en socialarbetare som båda arbetar inom förvaltningen. Materialet består också av anteckningar från studiebesök till organisationer med samma målgrupp. Resultaten visar fyra empiriska teman som från olika vinklar undersöker de yrkesverksammas perspektiv på medborgarskapets olika uppgifter med betoning på de yrkesverksammas roll att lära ut betydelsen av ett aktivt medborgarskap medan medborgarna ska vara villiga, passiva och lärande. Centralt är
This study examines how childhoods are constructed within the assessment process concerning respi... more 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. ABSTRAKT Studien undersöker barndomskonstruktioner inom handläggningsprocessen för korttidsvistelse enligt LSS. I denna process behöver socialarbetarna väga samman behoven avseende barnet med funktionsnedsättning, föräldrar och syskon. Socialarbetaren måste prioritera behov, utvärdera barns utveckling och definiera vad som utgör en god barndom. Ett av resultaten är att barndomskonstruktioner för barn med funktionsnedsättning fokuserar på att öva och utvecklas till skillnad från syskonen som uppfattas vara i behov av avkoppling och kvalitetstid med sina föräldrar. Konstruktionerna överensstämmer med de barndomssociologiska begrepp "beings" och "becomings" där barn med funktionsnedsättningar är "becomings" i ständigt behov av att utveckla sina färdigheter.
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