For young people today, adolescence has been extended, leading to greater opportunity than of previous generations to choose their own lifestyles. This opportunity implies increased freedom, as well as insecurity (Ramström 1991; Raymore, Barber, and Eccles 2001). However, freedom of choice is limited for young persons with disabilities, due to the attitudes of those around them and the limitations that the disability entails (Morris 2001; Olin 2003; Schultz and Liptak 1998). In Sweden, and in other Western countries, several reforms have been implemented over recent decades to improve the living conditions of persons with psychiatric disabilities (National Board of Health and Welfare 1999; Markström 2003). The success of emphasizing normalization, participation and the opportunity to live on equal terms with other citizens in society can be questioned (Emerson and Hatton 1994; Nirje 2003). However, because of these reforms, large psychiatric hospitals are being phased out, and in Sweden, responsibility for housing and employment of people with psychiatric disabilities has been transferred from healthcare to local authority social services.
In general, young persons with psychiatric disabilities tend to have a low educational level, high unemployment and low income. They have great difficulties in gaining access to permanent housing or regular jobs, which, in turn, limits their opportunities for work experience and developing new social relationships (Roets et al. 2007; Rowston 2002; Wilson and Beresford 2002). As a consequence, more and more young persons with psychiatric disabilities are provided for through social security, sickness benefits or activity benefits (SOU 2003:92; Swedish Social Insurance Agency 2006). Studies also show that, in order to avoid dependency and stigmatization, young people with psychiatric disabilities do not seek professional help (Corrigan and Watson 2002; Kravetz, Faust, and David 2000; Rowston 2002; Söder 1989). In addition, young persons with psychiatric disabilities may lead confined lives, because the attitudes of others exclude them from a range of social and cultural contexts, affording them fewer opportunities than their peers to meet friends and participate in meaningful activities (Hughes, Russell, and Paterson 2005; Morris 2001).
Persons with a psychiatric disability want to live a normal life with normal experiences and meaningful activities. They want to feel safe, healthy, free, and independent, and would prefer ordinary jobs (Pickens 1999). However, they are at risk of becoming isolated, as they spend most of their time alone in their homes (Bejerholm 2007). The time they spend outside the home is mostly spent in the neighbourhood, in day centres, outpatient clinics, shops, and restaurants, but also in other public places, such as the main train/bus station and public libraries (Bejerholm 2007; Ekeland and Bergem 2006; Sells, Stayner, and Davidson 2004).
Studies show that young persons with psychiatric disabilities who live in private homes, compared to those in group homes, appreciate privacy, independence, and a feeling of control, although they risk becoming isolated (Padgett 2007). The arenas in which people spend their time are important for their social relationships and the activities they perform (Bejerholm 2007; Bergman, Bergman, and Olsson 1990). However, knowledge about people with psychiatric disabilities and their environments is scarce, especially as it concerns young people (Evans, Wells, and Moch 2003). This article focuses on how young people with psychiatric disabilities experience places, social relationships, and activities in their everyday life, in a Swedish context. We use the term psychiatric disability in referring to people with severe psychiatric problems lasting a minimum of six months that have led to difficulties performing daily activities without support from others (see World Health Organization 2001; Wiersma 2006).
The social environment of everyday life consists of different spheres, ranging from private to public. The private are intimate, close and sealed; the public are open and accessible to anyone, common and collective, and offer a link between self and other (Henning and Lieberg 1996; Lofland 1998; Olsson, Sondén, and Ohlander 1997). Four categories of arenas may be distinguished: private, semi-private, public and semi-public (Bergman, Bergman, and Olsson 1990; Olsson, Sondén, and Ohlander 1997). The individual controls the private arena, and he or she decides who is admitted or not. The semi-private arena is intended for, and open to, a limited or specific group of people. Places in the semi-private arena are, for example, day centres, care settings and club premises open to members. In contrast, the public and semi-public arenas must be organized in an open, accessible way for anyone who wants to participate or just be there. Parks, squares and other outdoor settings, as well as indoor ones such as shops, cafés and restaurants, are typical places in these two categories, which, in this study, we treat as one, the public arena. Physical places also frame social practices where different types of relationships and activities can take place (Goffman 1995). The private arena is associated with close and intimate relationships, while semi-private and public are associated with weak ties. A lot of research emphasizes the importance of strong ties in, for example, close and intimate relationships with family members and close friends, which tend to be concentrated within smaller groups (Granovetter 1982; Scheff 1990, 1997). Weak ties are often highlighted as potentially important when individuals need to recruit new close relationships. They may also contribute to the individual's feeling of safety, security and integration (Henning and Lieberg 1996; Granovetter 1973, 1982). Everyday life is structured by routines and familiar modes of action, depending on our understanding and interpretation of the situation (Goffman 1982, 1995). Daily routines provide structure in everyday life and contribute to security, which can help people with psychiatric disabilities to control their illness (Nordström et al. 2009a). As part of everyday life, regular daily activities contribute to building routines and structure. Activity has a number of aspects, such as the daily rhythm of activity and rest, the variety and range of occupations, and their meaning to the individual (Bejerholm 2007).
The aim of the study is to describe and analyse variations and meanings of significant places, activities, and social relationships among young persons with psychiatric disabilities.
The specific research questions are:
The respondents, 10 young adults with psychiatric disabilities were recruited from a multi-science study including baseline mapping and questionnaires. Inclusive criteria were having a permanent or recurring condition of psychiatric disability lasting a minimum of six months and difficulties performing daily activities without support from others such as help with housework, personal care, care of the home or occupational tasks. The study was carried out in the region of Sjuhärad in the southern part of Sweden between 2005 and 2007 (Nordström et al. 2009b). Thirty-five persons aged 18 to 37 years answered a baseline questionnaire, and 13 agreed to be interviewed. Ten informants, six women and four men, were interviewed at the first occasion, and seven at the second occasion. The 10 young adults who participated in this study are listed in the sociodemographic Table 1.
|Name||No. of interviews||Sex||Age||Marital status||Children||Accommodation||Type of occupation||Self- reported psychiatric diagnosis|
|Anna||1||F||30||Unmarried||0||Group home||None||Borderline Personality Diseases Depression Anxiety|
|Erik||2||M||26||Unmarried||0||Group home||None||Not declared|
|Eva||2||F||20||Unmarried||0||Own or rented apartment/house||None||Depression|
|Jenny||1||F||29||Unmarried||1||Own or rented apartment/house||None||Not declared|
|John||2||M||23||Unmarried||0||Own or rented apartment/house||None||Post-traumatic stress disorder|
|Jonas||1||M||37||Unmarried||0||Own or rented apartment/house||Day centre||Not declared|
|Maria||2||F||34||Unmarried||2||Own or rented apartment/house||Work Studies||Anorexia Depression Obsessive compulsive disorder|
|Mattias||2||M||27||Unmarried||0||Own or rented apartment/house||Day centre||Bipolar disorder|
|Moa||2||F||23||Unmarried||1||Own or rented apartment/house||Day centre||Not declared|
|Sofia||2||F||24||Unmarried||0||Group home||Day centre||Autism Psychosis|
The study adhered to the ethical guidelines of the Helsinki Declaration (WMA 2000). The informants’ dependence on various welfare agencies might have resulted in problems. Potential concerns were solved by emphasizing that the research project was independent of the organizations that provide care and support and that participation in the study would not affect continued assistance. Written informed consent to participate in the interviews was collected through the baseline questionnaires, by which the informants had the opportunity to indicate if they would like to participate in an interview at a later date. Informants who agreed were then contacted by letter, and a few days later phoned by the interviewer. We obtained verbal agreement and determined times and places for the interviews, most of which took place in the respondents’ homes. Questions about participation and voluntary participation are not viewed as resolved when a respondent agrees to be interviewed. As researchers, we referred to this issue during the entire research process (Miles and Huberman 1994; Taylor and Bogdan 1998).
We interviewed 10 informants, seven of them on two occasions, using semi-structured and in-depth interviews to explore the experiences of the young person's everyday situation (Patton 2003). The interview guides were constructed by the authors. The first interview session took place between June and July 2006, and the second one between May and July 2007. The first interview was semi-structured and elicited data about the young person's childhood, living conditions, everyday routines, social support and daily activities. The second interview was guided by a site-map inspired by the tradition of social network research (Tracy and Abell 1994) and focused on the young person's experiences of significant places, relationships, and activities. The duration of the interviews was between thirty minutes and two hours. The rationale of adopting two different interview techniques was to get a deeper understanding of the informants’ experiences of everyday life. The site-map used in the second interview comprised a paper with a pre-drawn circle in which the informant was asked to fill in significant places where he/she spent time, guided by the following main questions: ‘Can you please fill in the different places where you spend your time in the circle on this paper, letting the size of the different places in the circle somehow correspond to the amount of time you spend there?’ ‘Can you also fill in who you spend your time with at the different places?’ Further questions focused on the kind of activities available at the different places, and additional follow-up questions were asked. The interviews were tape-recorded and transcribed verbatim by the interviewer. To avoid misinterpretation, the interviewer listened to all recordings and checked the transcripts against the recordings.
Qualitative content analysis was chosen to analyse the transcribed interviews, to identify core consistencies and meanings in the material with the goal of providing new insights and increased understanding of the variations and meanings of everyday life (Altheide 1996; Miles and Huberman 1994). In this study we focus upon significant places, extent and meaning of social relationships and activities. The analysis was performed in several steps. First, all transcribed text was read through several times. Taking an empirically oriented approach, we marked text relevant to the research questions, condensed the selected units of meanings and abstracted them into codes. Next, a conceptual analysis of the sets, according to places, relationships and activities, was performed and the codes were structured into themes. The resulting themes were illustrated with quotations. Discussion between the authors guided every step of the analysis process. We analysed the site-maps, considering the amount of space the informants gave to the different places, which corresponded to the time spent in each. The analysis involved a constant comparison between the content of the interviews and the site-maps. We must emphasize that the sensitizing concepts and the empirical themes should not be regarded as mutually exclusive; they may overlap. The analysis was interwoven with other steps of the research process, as is characteristic of most qualitative research (for further discussion, see Taylor and Bogdan 1998; Miles and Huberman 1994).
The results in this section are derived from the second set of interviews, in which the participants (n=7) used a site-map to estimate the time they spent in different places.
The most common arena where the respondents spent their time was the private arena: their own homes, and the homes of their parents. However, many also spent a lot of time in the semi-private arena, which consists of places such as day centres and care settings. Some also spent their time in the public arena, including nature settings such as forests and parks in the neighbourhood, and less often, places such as shops, restaurants and cafés. The percentages in Table 2 are based on the authors’ interpretation of how the participants filled in the site-map.
|Name||Private arena||Semi-private arena||Public arena|
From the site-maps it was obvious that all informants estimated and evaluated the time spent in the private arena as dominating and significant. Places in the semi-private arena were also significant for many of them, but with greater variations. Failing to specify time spent in places in the semi-private or public arenas probably did not mean that they never spent any time outside the private arena, but that this time was not rated as being important to them. In the following sections, we will describe and analyse the results of both sets of interviews, to reveal the participants' experiences of places, social relationships and activities in different arenas.
A home means various things to different people, depending on personality, experiences, interests and life situation, which was reflected in the interviews. There is also a large variation between the amount of time the young person's seemed to spend in their own homes and how they perceived that time. They all stressed the importance of being their own masters and being able to decide whom ‘they allowed over the threshold’. For some, their own home was described as a sanctuary, a place where they could withdraw and engage in different activities that interested them. Some rarely seemed to have visitors, but did not perceive this as negative; they appreciated solitude in their home, and being able to do what they wanted, at any time of the day. Others, who described themselves as social people with a lot of social contacts outside the home, allowed very few people into their homes. It seemed that earlier experiences of being used and fooled had created feelings of insecurity, which led to a desire to preserve the home as a safe area in an unsafe world:
I don't really like being alone, but I'd rather be alone than with insincere people. If I'm at home and I only have myself to take care of, then there's no arguing or fuss. (Moa)
For others, the home was a place for socializing and solidarity. Some informants were physically alone in their homes, but they kept in contact with other people by chatting on the internet or talking on the phone. This kind of interaction gave opportunity both to create new social relationships and to maintain existing ones:
If you think about it, then the computer is a big part of my life. It means a lot to me. It's almost like the end of the world if the broadband isn't working. Just think how much time I spend chatting then. (John)
However, others related difficulties feeling as if they had their own home, separate from their parents’. One respondent expressed a sense of ambivalence that the border between his own home and his mother's was very indistinct, although he talked about the significance of having a home of his own:
Before I moved here, my mum and I lived together. Than we lived in two apartments in the same area, so close we could see into each other's apartments. It felt like I had two homes. Now my mum is moving in with me … It feels a bit so-so; we can live together for a while, but I don't want her to live with me for a long time. (Mattias)
The relationships the informants described in the private arena were few, but varied in type, with friends, family members, relatives and professional helpers. Supportive and confidential relationships were reported, as well as more complicated ones. Some described relationships to parents as very trustful, warm and supportive. Others seemed to use their private networks consciously, turning to the people they considered most suitable to help them with a particular type of support concerning practical matters and emotional matters:
I talk to my aunt about how I feel. It's better to talk to her than with my mum, because she gets so worried when I'm not feeling great. But my mum helps me with medication, because I forget to take them a lot. My uncle, he helps me with the car; if I need help fixing things or fixing my computer, then I phone my brother. My grandmother helps me with clothes – yeah, they are all there for me. (Mattias)
For some, however, the relationships to parents were described as complicated. They expressed that their parents affected their lives in a negative manner and tried to avoid much contact and involvement with them. Although the informants saw their parents regularly, they tried to avoid letting the parents into their homes; instead, they preferred to socialize with them in the parental home:
No, they don't visit me, but I'm sure they would if I didn't call them beforehand; then they would definitely come to my home. (Erik)
Some of the informants stressed that their psychiatric problems were a complicating factor and a strain on their private networks. Those who lived with their children described feelings of shortcomings related to problems meeting the demands and needs of the children in a proper way, especially during periods when the mental illness was present:
When I'm feeling bad, I can't really manage with my children, I shout at them for the slightest thing, I feel like I'm not enough … The children have to be at home a lot, I can't manage anything extra like taking them to gymnastics or things like that. (Maria)
Some of the informants received help in the home from social or psychiatric personnel. Some highlighted these kinds of relationships as very important and described them as reliable and trustful relationships, which helped them to control their illness. Others, especially those living in group homes, described that the personnel gave them only practical help to manage their home and everyday life. For some, this was not enough; they wanted to have more emotional support, especially during periods of anxiety:
I do get practical help, for example, shopping. I suffer from anxiety. I get it a lot in the evening and then I want to talk, but they say ‘We don't talk about things like that here’, ‘Here, we just live’, or ‘Here, we're going to have a good time’. (Anna)
The activities the informants conducted in their homes could be understood in a broad way, such as housework, reading and renovating. Some of the informants seemed to be very active, while others were more passive. In particular, those who lived in their own houses viewed their homes as a project consisting of a number of different practical activities and jobs, both in the house and in the garden, while others experienced the expectations of doing different activities in the home as demands that often became too much for them:
It feels like I can't manage, it feels like there is so much I should do at home, and then I end up doing nothing because it's just too much. (Eva)
Respondents without any regular activities outside the home described days characterized by a calm tempo, whereby, in addition to daily routines, activities such as watching television and being on the Internet were often the most common. In particular, the informants who lived in group homes described a daily life characterized by monotony and passivity; every day was like the other. For informants who had children, the activities during the day differed. Busy mornings and afternoons with lots of practical activities seemed to frame and structure the days, although the in-between time consisted of inactivity and passivity:
I get up, wake my daughter, make breakfast, put her on the bus – then I tidy up a bit. Then I sit down and watch TV. There's a lot of taking it easy, as I don't have much strength or energy, so there's a lot of sitting on the sofa. Sometimes it can take eight hours for me to wash up three glasses; I do nothing else the whole day … Then it all starts up again when she comes home: make dinner, clean clothes and maybe off to some activity. (Jenny)
The respondents’ disabilities give them access to places in the semi-private arena that are aimed in particular towards people with psychiatric problems. Two types of places appear: day centres and different kinds of care settings, such as psychiatric out-patient clinics and social services. The day centres were often on a small scale, with a limited number of visitors. They were described as very important places, mostly in positive terms, but with some feelings of ambivalence. On one hand, it was good to meet other people, but on the other, it could be difficult to be together and connected with people who had more severe psychiatric disabilities and who represented older generations:
I'd rather not go in the mornings, when it's just people who are sicker than me. They're not so much fun to talk to. They take lots of medication and then they don't have much energy … Plus they're all a lot older than me. I'm the youngest. (Moa)
All the informants expressed a future desire to be able to get a ‘real’ job in the form of paid work in the open job market. Those who had access to a day centre saw it as the first step to a professional career and a passage to the ordinary labour market:
I hope what I learn here putting together those electronic gadgets can help me get a real job in a company. (Sofia)
There were two types of relationships the informants described in the semi-private arena: relationships with the other participants and with the personnel. Several of the informants told about feelings of community in day centres, and some had met people there whom they considered their best friends:
Martin, he's also a friend that I met at the day centre, like Sara. We sometimes party together, as well, or jump on the trampoline, go out shopping, bake … We do lots of stuff, but most of all we talk a lot. Before I started at the day centre, I didn't know anyone at all. (Moa)
The personnel at the day centres also seemed to play an important role in everyday life, and offered valuable support. This was especially notable for those who did not have close relationships:
I don't have any really close friends, but Håkan [personnel at the day centre], he's good. But he's not a friend; he's probably too old to be a friend. But he's good. (Sofia)
All the informants reported that they were patients in psychiatric outpatient clinics; some also had contact with social services and the social insurance agency. Sometimes these visits were described in rather neutral terms, especially by those who only visited a doctor twice a year to follow up ongoing medication. For others, the care settings offered valuable help, which contributed to a feeling of security in everyday life. However, there were also informants who expressed dissatisfaction with the care and welfare systems. Complaints about long waiting lists, an absence of adequate help and lack of continuity were common:
I think psychiatric care is useless; you don't get any help from them. I'd like someone I could talk to a couple of times a week, someone you knew was there … As it is now, you have to go through your problems again and again for new people. It doesn't make me feel secure. (Jenny)
Day centres were described as an oasis in life, with a relaxed tempo and a lack of demand for achievement. Informants who regularly attended had somewhere to go outside of the home, which helped them to create and maintain regular routines in everyday life:
I work at one of those places. The days I work, I get up at eight in the morning, but the days I'm off, I lie in bed all day … I really like it, well maybe not the actual job, but I have somewhere to go and meet other people and I can work at my own pace. (Moa)
Some informants highlighted that the day centres offered activities such as games, physical activities and excursions, while others stressed that they did ‘real’ work, related to the nature of the tasks they performed:
I go to a kind of sheltered workshop where people who have the same problem as me work. I pack screws, carry boxes, weigh and close boxes … It's solid work, I think – you have to exert yourself a bit, it's strange that you don't get paid, because I do proper work. (Jonas)
Characteristic of the public arena is that it is open and accessible for all people in society. For the informants who did not have a daily occupation, the public arena was, after the home, considered the most important place in everyday life. A typical practice was to take regular walks once or twice a day. There were, however, also barriers – not least, financial ones – that limited access to some public places.
I go to the cinema too, but not so often because it costs money, so I can only really afford to go every third month. If I go to the cinema then I can't afford to eat … I'd really like to go swimming, but it's so expensive and I can't afford it – it's typical that everything costs so much. (Jonas)
Other informants referred to more emotional hindrances that complicated being in some environments in the public arena. Feelings of inability to fulfil social norms end expectations led to experiences of shortcomings and alienation:
I panic a lot when I'm out. The last time was when I was at a restaurant and I started to panic, because I hadn't put on nice clothes and I hadn't fixed my hair. Then I get really nervous; I feel like I don't fit in. (Eva)
The public arena offers many possibilities to meet people in a non-demanding way. Meeting people in public places, especially outdoors, was often described as a relaxed form of socializing. Most of the informants talked about regular social contact with people they met outside, in the neighbourhood. Sometimes, this contact seemed to consist only of saying hello to people they knew by sight. A few described social contact in the public arena consisting of brief chats, now and then, which were a valuable part of the daily routine. Some encounters in the public arena had developed into regular and supportive friendships:
We usually walk our dogs together … If I'm sad then I can talk to her, or when I need to borrow money then I can, or if I want to go away somewhere. (John)
However, relationships in public places were not always that easy. Several of the informants told about difficulties to establish contact with people in restaurants and bars:
I met a guy when I was at the pub, so I asked if he wanted a beer, but he left. They always do that when I try to be friendly. (Erik)
Due to their open character, public arenas offer participation on different levels. Indoor activities seemed more difficult to conduct than outdoor. Almost everyone stressed the importance of regular physical activity, which sometimes contributed to creating a structure and regularity in everyday life. But for some, such necessary and basic activities as shopping were described as unpleasant and associated with stress and discomfort:
I try to do my shopping as fast as I can. I get so stressed when I have to pay at the checkout. I never know what direction to swipe the card so I usually always do it wrong. Then people in the queue get irritated and I make even more mistakes. (John)
Others revealed problems with leaving their homes on their own. To dare to go outside they needed a companion who, besides planning different activities, also kept up the activities in the public arena. Some of the informants received this kind of support from care personnel, who offered valuable help in gaining access to different places in the public arena:
Before I got my contact person, I always sat home alone. Even if I wanted to, I didn't dare go out among other people. But now he comes with me and helps me to go bowling, fishing, or go to the cinema or the café. He comes to my house every Tuesday and we plan what we're going to do, then we do it on a Friday or at the weekend. (Mattias)
The participants' own views of their experiences were elicited through a mix of semi-structured and in-depth interviews, complemented with site-maps. This combination enriched the empirical material. The use of site-maps sometimes had a stimulating effect, especially for the respondents who not were used to reflecting and talking about their everyday life. Data are, of course, also a result of the interaction between the interviewee and the interviewer, and should not be seen as an exact picture of the studied phenomena. This study is based on a rather small sample and relies primarily on analytical generalization, meaning that we strove to generalize the results to a broader theory and findings of other research (Miles and Huberman 1994).
Today's society emphasizes the individual's right to decide who is allowed access to his or her home (Bergman, Bergman, and Olsson 1990; Olsson, Sondén, and Ohlander 1997), a position reflected in the interviews in which the informants stressed the importance of having control in their homes. Some of the informants spent most of their time at home, while others moved more freely between different places, a finding that is highlighted in other studies concerning the life situation of people with psychiatric disabilities (see, for example, Bejerholm 2007). Irrespective of time spent in their homes, control emerged as an important concern.
However, the home could also be associated with a lack of control, related to the difficulties of handling different kinds of demands and an inability to eliminate social isolation. Another way to manage everyday life was with regular visits to places in the semi-private arena created especially for people with psychiatric disabilities. Of special interest were the day centres, which functioned both as a frontstage and backstage (Goffman 1995). In the first case, the day centres were seen as an ordinary working place. The informants highlighted the importance of fulfilling requirements and expectations associated with regular jobs. For others, however, the day centres represented a haven in everyday life, a place where they could find respite from society's normative expectations, and also a place to experience encouragement and support to participate in other contexts in society, which, according to Goffman (1995), exemplify backstage regions. The day centres offered opportunities to regularly participate and socialize with others, creating regular routines in everyday life. To be among others offers a possibility to identify with others and creates feelings of solidarity (Elstad and Kristiansen 2009; Goffman 1982; Nordström et al. 2009a). For some informants, however, visits to the day centre affected their identity in a negative way. They experienced a risk of being identified with a social category to which they did not want to belong (Corrigan and Watson 2002; Goffman 1973).
Public places can be of great importance for people with psychiatric disabilities (Bejerholm 2007). The open character and accessibility of these locations offer both anonymity and acknowledgement (Bergman, Bergman, and Olsson 1990; Goffman 1982; Olsson, Sondén, and Ohlander 1997). Taking part in public activities, or simply being in a public place, can lead to feelings of belonging to a collective enterprise In this study outdoor places in the neighbourhood were experienced as a permissive place where the informants could come and go as they pleased. Contrary to other research (Bejerholm 2007; Ekeland and Bergem 2006; Sells, Stayner, and Davidson 2004), this study shows that the informants rarely went to indoor places such as cafés and restaurants. Experiences of not being accepted and an inability to fulfil social expectations led to a feeling of not being in command of the situation.
Having access to many places in different arenas provides opportunities to establish a range of social relationships with respect to frequency, emotional intensity, support and solidarity (Granovetter 1973, 1982; Henning and Lieberg 1996). Spending most of their time in the home was, for some, identified with solitude and isolation, but for another group, a large part of socializing, both for creating new social relationships and maintaining existing ones, took place on the internet. Having support from a private network has been highlighted as one of the most important factors for recovery and quality of life for people with psychiatric disabilities (Schön 2009; Topor et al. 2006). Almost all of the informants reported that they had uneasy or ambivalent relationships with their parents and had, therefore, developed strategies for keeping their parents out of their homes. By defining a distance from their parents, the informants could diminish the feeling of being too close and intimate, which could be seen as a manifestation of a desire to assert their autonomy and independence (Scheff 1990, 1997). In the semi-private arena, different types of relationships were established. Some derived a feeling of security from having other people waiting for them in these places. Relationships with visitors, professionals and friends were created to various degrees, and could be characterized by both weak and strong ties. To some extent, it was possible to distinguish between the two types of relationships, but it was quite common that weak ties developed into intimate and close ones, and sometimes the other way round. Lack of supportive private relationships made personnel important. Some of the relationships were described as emotional, reliable, and supportive, while others were considered distant and indifferent (Scheff 1990, 1997). In outdoor public places the informants could blend in and meet others, both acquaintances and strangers. Different types of relationships were established, which could be described as acknowledging contacts, greeting contacts and helping contacts (Henning and Lieberg 1996). Sometimes these outdoor contacts developed into strong ties. In indoor public places, relationships were associated with rejection and negative responses, which illustrate that socializing with ordinary people could be challenging and difficult for people with disabilities (Corrigan and Watson 2002; Goffman 1973).
Everyday life is characterized by well-known and well-defined situations in which routines and actions are taken for granted (Goffman 1995). For several informants the daily routines create a sense of safety, security, structure, and stability in daily life. For many of the interviewees, household chores represented a way of creating order in a life that was otherwise described as passive and lacking in initiative. For others, the everyday routines were connected with difficulties, which could lead to feelings of shortcomings and stress. This article stresses the importance of having something to do outside the home. Some activities had a strong symbolic value, as they were seen as qualifying for paid employment in the future. Many of the activities in public places are subtle, such as a glance or a nod (Goffman 1982), while others have a more distinct character, such as exercise and excursions. To see and meet others without being supervised and checked on was important for the informants’ experiences of being part of society and an important prerequisite for integration into society.
Young people with psychiatric disabilities have limited opportunities to participate and belong to a community. Attitudes and barriers in society signal that the boundary between the normal and the different is sharp and unambiguous, and almost impossible to penetrate. This may complicate the process of becoming adults and may be related to the fact that the young adults must relate to, and manage, the stigma of their disability. They also have to deal with the fact that a disability makes it more difficult for them to establish themselves in society. This article shows that, besides one's own home, various places in the semi-private and public arenas play a significant role in daily life and are experienced both positively and negatively. The informants’ own homes proved to be very important, even if they were used in different ways. Home was mentioned in terms of independence and autonomy, but also with respect to isolation and demands. For many of the informants, day centres have a crucial role. On one hand, they offer possibilities to be part of a community of individuals whose difficulties and experiences are similar to one's own. On the other, they could function as a springboard to society, provided that they offer opportunities for the visitors to develop a positive identity. Places in the public arena, especially the outdoor neighbourhood, offered anonymity and belonging. The informants could meet people they recognized, as well as people they had not seen before. The familiar, but also the unexpected, was perceived as both safe and exciting. The public arena also offered an unsupervised environment, without strict norms and regulations for behaviour, where the informants were free from oversight by staff and others who recognized them in other places.
The authors are particularly grateful to the informants for sharing their experiences with us. This work was supported by grants from the Vårdal Institute, the Swedish Institute for Health Sciences and the Department of Social Work at the University of Gothenburg.
Elstad , T.A. and Kristiansen , K. (2009). . Mental health centres as ‘meeting-places’ in the community: exploring experiences of being service users and participants. . Scandinavian Journal of Disability Research , 11((3)): : 195.–.
Hughes , B. , Russell , R. and Paterson , K. (2005). . Nothing to be had ‘off the peg’: Consumption, identity and the immobilization of young disabled persons. . Disability & Society , 20((1)): : 3.–.
Kravetz , S. , Faust , M. and David , M. (2000). . Accepting the mental illness label, perceived control over the illness, and quality of life. . Psychiatric Rehabilitation Journal , 23((4)): : 323.–.
National Board of Health and Welfare . 1999 . Välfärd och valfrihet? - Slutrapport från utvärderingen av 1995 års psykiatrireform [Welfare and freedom of choice? Final report from the evaluation of the 1995 psychiatric care reform] . [city: Stockholm] : National Board of Health and Welfare.
Nordström , M. , Dunér , A. , Olin , E. and Wijk , H. (2009a). . Places, social relations, and activities in the arenas of everyday life among older adults with psychiatric disability – an interview study. . International Psychogeriatrics , 21((2)): : 401.–.
Nordström , M. , Björkman , T. , Skärsäter , I. and Wijk , H. (2009b). . The life circumstances of persons with a psychiatric disability. A survey in a region in southern Sweden. . Journal of Psychiatric and Mental Health Nursing , 16: : 738.–.
Olsson , S. , Sondén , G. Cruse and Ohlander , M. (1997). . Det lilla Grannskapet. Gårdar, Trapphus och Socialt Liv [The little neighbourhood: yards, stairwells and social life]. , [city: Gothenburg], , Sweden: : Chalmers Technical University. .
Ramström , J. (1991). . Tonåringen i välfärdsamhället. Om svårigheter att bli vuxen i dagens västerländska kultur [The teenager in welfare society. About difficulties becoming an adult in today's Western culture]. , [city: Lund], , Sweden: : Natur och Kultur. .
Raymore , L.A. , Barber , B.L. and Eccles , J.S. (2001). . Leaving home, attending college, partnership and parenthood: The role of life transition events in leisure pattern stability from adolescence to young adulthood. . Journal of Youth and Adolescence , 30((2)): : 197.–.
Roets , G. , Kristiansen , K. , Van Hove , G. and Vanderplasschen , W. (2007). . Living thorough exposure to toxic psychiatric orthodoxies: Exploring narratives of people with ‘mental health problems’ who are looking for employment on the open labour market. . Disability & Society , 22((3)): : 267.–.
Söder , M. (1989). . Oberoende och autonomi. Om vuxenblivandet för personer med funktionsnedsättningar [Independence and autonomy. About adulthood for disabled persons]. . Socialmedicinsk Tidskrift , 66((4)): : 155.–.
Swedish Social Insurance Agency . 2006 . Socialförsäkringsboken. På vuxenlivets tröskel [Social security paper. On the threshold of adulthood] . http://www.vg.forsakringskassan.
Topor , A. , Borg , M. , Mezzina , R. , Sells , D. , Martin , I. and Davidson , L. (2006). . Others: The role of family, friends and professionals in the recovery process. . American Journal of Psychiatric Rehabilitation , 9: : 17.–.
Wilson , H. , and P. Beresford . 2002 . Madness, distress and post-modernity: Putting the record straight . In Disability/post-modernity: Embodying disability theory , Marian Corker and Tom Shakespeare , 143 – 58 . [city: London] : Continuum .