Beyond formalized plans: User involvement in support in daily living – users’ and support workers’ experiences

Abstract

Background:

User involvement, based on respect and carried out through dialogue, has been shown to lead to increased self-respect, self-confidence and positive identity. In Sweden, the Social Service Act requires that interventions be designed and implemented together with the individual concerned. The basic criterion for social support is prolonged severe mental illness (usually at least 6 months), with no criteria for specific diagnosis or institutional history. The most common form of social support is ‘support in daily living’, a community care intervention for people aged 18 years or older who have their own homes and living arrangements.

Aim:

This article aims to deepen our understanding of user involvement at the individual level in the provision of an ongoing social work intervention. What elements of user involvement can be found in users’ and support workers’ descriptions of helpful support in daily living?

Method:

Qualitative interviews were conducted with 18 users, who had experienced support in daily living as helpful, and 16 interviews with the users’ support workers.

Results:

Three major, interconnected themes emerged: Constant dialogue; Framing the flexibility, in relation to formalized intervention plans and regulations; The importance of ‘small things’, decisions concerning daily life.

Conclusion:

Both users and support workers described user involvement at the individual, micro-level to be an integral part of helpful support in daily living. It was possible to create a space for dialogue and co-creation in which users were involved in formulating and deciding the contents of their support at an informal level, to influence their own everyday lives. While a formal framework of rules, restrictions and plans surrounds meetings between users and professionals, a facilitating factor may be the absence of too detailed plans and regulations, leaving trust to users and professionals and their capacity to manage most of the choices they have to make.

Keywords

User involvement support in daily living users’ perspective professionals’ perspective supported housing

User involvement in policy and practice

Involvement for individual users is now part of the official agenda in many countries. Laitila et al. (2018) define user involvement as that users are respected, listened to and can act in cooperation with professionals to influence their own care and treatment. User involvement can lead to increased self-confidence and sense of achievement (Truman & Raine, 2002). Within the recovery movement, the role of the professional helper has been reformulated as ‘putting people with mental health problems in the “driving seat” of their own recovery – and situating practitioners as allies or enablers of this process’ (Tew, 2011, p. 7).

Nevertheless, a gap seems to exist between the rhetoric in policy documents and everyday practice (Tait & Lester, 2005). Eriksson (2018) has argued that policies have concentrated focus on organizational and individual levels, in a co-optation of users and user organizations to disarm criticism of public policies and managerial practices.

In a systematic synthesis of existing research, Bee et al. (2015) found indications that formalized user involvement, in which the user’s consent to the intervention is formally documented, can actually become a barrier to the implementation of user involvement in day-to-day clinical practice. Also in social care, power relations in formal planning can become a barrier to user involvement in the carrying out of the intervention (Slettebø et al., 2012).

Bee et al. (2015) also found facilitators to user involvement including ‘familiarity with service users’ preferences’ (p. 109), a need for staff ‘to engage intensively and consistently with service users’ (p. 109) and the ‘pivotal role of respect’ (p. 108). As additional barriers, Bee et al. mention the tendency to ‘medicalise service user experiences’ (p. 109), lack of time and ‘insufficient opportunities for care negotiation’ (p. 110).

Rise (2012) studied user involvement in a clinical setting and found respect to be fundamental, carried out through dialogue. Klausen et al. (2017) also identified these principles as fundamental, using the concept of shared decision-making, which they consider essential in all phases of mental health care at the individual level. Other recent research highlights the importance of ‘micro-affirmations’ concerning the ‘small things’ of everyday living in the recovery process (Topor et al., 2018).

In the Scandinavian countries, some of the psychiatric care’s traditional tasks have been shifted to social work agencies as part of the normalization policy connected to de-institutionalization. Thus, users’ housing, occupations and other challenges of everyday life are handled in a non-medical context. Most people with severe mental illness live in their own homes, while a minority is accommodated in housing provided by the social service.

In Sweden, the Social Service Act requires that interventions be designed and implemented together with the individual concerned (SFS 2001:453). The most common form of social support for persons with severe mental illness is ‘support in daily living’ (SIDL), a social work intervention for people aged 18 years or older who have their own homes and living arrangements (National Board of Health and Welfare (NBHW), 2008). The aim of SIDL is to contribute to the normalization of living conditions in the community for the target group. Andersson (2016, p. 509) describes SIDL as an ‘everyday act of social support’, while Brolin et al. (2016) describe the mastering of everyday life as a process in which the support worker is an important facilitator. SIDL can be described as near type 4 in the Stax-SA taxonomy (MacPherson et al., 2018) with (1) no staff on site, (2) low/moderate support, (3) individual accommodation, as people live in their own flats and, thus, (4) no emphasis on moving on.

Aim

This article aims to deepen our understanding of user involvement at the individual level in the provision of an ongoing social work intervention. As earlier studies of helpful relationships have often been based on either users’ or staff’s experiences, we have attempted to connect the two perspectives. What elements of user involvement can be found in users’ and support workers’ descriptions of helpful SIDL?

Method

The study had an explorative approach, using qualitative interviews for empirical data (Brinkmann & Kvale, 2014). In accordance with the study’s aim, both users and support workers were interviewed. The users in the study lived in their own apartments, where they received support from social workers.

Setting

The setting was support services for persons with severe mental illness in community care in three municipalities. The basic criterion for social support is prolonged severe mental illness (usually at least 6 months), with no criteria for specific diagnosis or institutional history. This covers a wide range of diagnoses, most commonly psychosis-related, bipolar or severe depression, and sometimes also neuropsychiatric diagnoses such as high functioning autism. To qualify for social support, the impairment must be such that it is difficult for the person to live a completely independent life in the community. Most also have a care contact with community-based mental health services.

SIDL is offered as a formal intervention by the social service in the municipality, in which an application from an individual user can be approved following an assessment of need. The usual age span is 18–65 years. SIDL is usually granted for a period of a year, with extensions as needed. An ‘order’ is sent to a provider, who is then responsible for writing a ‘support plan’ in consultation with the user and for providing the social workers who execute the intervention (NBHW, 2010).

SIDL focuses on the person’s needs to be able to live a normal life in the community and includes help in taking care of one’s home, but also developing social relationships, using other services available to all persons living in the community and other situations which occur in daily life. Cooperation between psychiatric and social services is stressed but occurs mostly around situations when psychiatric in-patient care has been actualized.

Recruiting and sampling

As a first step, interviewees were recruited through advertisements on bulletin boards and information on the municipalities’ websites or distributed by support staff, asking for users who had experienced SIDL as helpful. Selection criteria were the user (1) had received SIDL for at least 6 months and (2) did not receive the support in the context of coercive outpatient care. Most users had varying experiences of SIDL, but our aim was to focus on and explore in depth how positive experiences were constituted. No attempt was made to screen or sort interviewees based on diagnosis or duration of disability. Eighteen users contacted the research team, all of whom were interviewed. Interviewees included 12 women and six men, ranging in age from 34 to 73 years.

As a second step, at the close of each interview, the user was asked to name a support worker who had been of help and, with the user’s permission, could be interviewed. This made it possible to interview ‘pairs’ of users and support workers. In two cases, repeated contact attempts failed, and in three cases, two users named the same support worker, who was then interviewed twice. In total, 16 interviews were conducted with 13 support workers, nine women and four men, with experience ranging from several months to nearly 20 years.

The interviews

Users were interviewed in their homes, in the municipalities’ facilities or at the interviewer’s office, according to the user’s choice. Support workers were interviewed during paid work hours in municipal facilities.

All three authors were involved in gathering data, each interviewing ‘pairs’ of users and support workers. The interviews were audio-recorded and transcribed in full.

Ethical issues and ethics approval

Ethics approval was granted by the Regional Ethical Review Board in Stockholm, Sweden.

Analysis

The interviews were analysed using Braun and Clarke’s work on thematic analysis (Braun & Clarke, 2006). The approach was data driven and inductive, beginning with repeated reading of the interviews and initial coding. The authors then continued formulating, defining and redefining themes in a process involving a series of discussions.

The authors have previously written about topics closely related to the current one but based on different empirical datasets and regarding other institutional frames. This experience has influenced our reading of the current data. However, the authors have different and varying backgrounds, which strengthened the analytical process.

Under the section ‘Findings’, we have chosen to present extracts from the interviews to illustrate the themes we have found in the empirical data.

Findings

Analysis of the interview material resulted in three major, interconnected themes: Constant dialogue; Framing the flexibility; The importance of ‘small things’.

Framing the flexibility

The policies, rules and plans that provide the formal framework for SIDL influenced the possibilities for user involvement.

No user or support worker spontaneously mentioned the support plan. Most users remembered that a plan had been drawn up but did not appear to think it important.

Some users described negative experiences of rules prohibiting desired help. One example was when users were no longer allowed to take walks with their support worker, as these were considered ‘social activities’. Another example was a new rule that supporter workers were not allowed to drive the user to places as needed, which made food shopping and other errands more difficult to arrange.

Both users and support workers considered that support workers should be flexible in the specific situation, rather than rigidly following rules. They saw formal plans as long-term goals, rather than detailed instructions:

To not exactly follow regulations that someone else has formulated. Because I know what I work with, I know what to do. I do not always need someone who has sat behind a desk and made a plan that this is the way it will be. (Tommy, support worker)

Even though the support plan had been formulated in cooperation with the user, it could not take into account the vicissitudes of everyday life and the user’s changing moods and needs. Here lies a possible contradiction between the formalized plan and helpful professional practice.

Constant dialogue

SIDL may consist of an array of activities and chores. While the general direction was in accordance with the formal intervention orders and support plans, both users and support workers described how decisions were made in a dialogue in their individual meetings, with the wishes of the users as the guiding principle. Support workers played an active role in facilitating the users’ involvement, encouraging them to take initiatives and, if they wished, make plans for their meetings:

I really feel that I am the ‘manager’. [. . .] It is not like the support worker comes to my house and says ‘Julia, today we are doing this’ or ‘Julia, this looks awful’ . . . But it is me who says ‘yes, today we are doing this’. (Julia, user)

Sometimes, users asked support workers for advice if they themselves did not have a clear idea of what they wanted or how to structure the activities:

She comes and ‘shall we go out for a walk today’, might be the first question. [. . .] But if I have another plan or want to sit and talk or if I have planned for us to clean or whatever it might be, then she helps me to execute it. (Maria, user)

Sometimes, support workers reminded users to do things they themselves had asked for help with, such as making plans and helping motivate them:

They come with suggestions for what to do. And then you can say no if you don’t want to. And they respect that. And then you can make suggestions yourself and then it gets done. (Hans, user)

It was also possible to not do what had been planned, for example, when the user was not feeling well:

I see that today is a ‘black day’. [. . .] Then I say, ‘hey, should we go to a cafe today or what? You don’t want to go to (clean house), do you?’ ‘No, I don’t want to . . .’, and then we go take a cup of coffee. (Ulrika, support worker)

Thus, both the user and the support worker could propose to put aside the formal plan. Real shared decision-making necessitates an adaptation to the user’s changing situation. The respect for the users’ actual needs and requests can be seen as a process of empowerment. The user experiences situations where she/he can influence his or her own life, and the support she/he is getting from authorities leads to a sense of agency, which a basis for an improved sense of self.

The importance of ‘small things’

Both users and support workers mentioned what could be considered as the ‘small things’ or micro-affirmations as core moments in developing helpful relationships and an improved sense of self:

She should not feel that she is the underdog because I am a support worker and come to her home. But I am really a guest in her home so I ask, ‘may I come in’ and so on, almost every time. . . . I do not want to come in and take over or something, but she decides the content and then . . . . You might say we become a team. (Ulrika, support worker)

To ask if one is welcome in another person’s home is a normal ritual in everyday life, in clear contrast to most practice in mental health care, restoring and confirming respect for the user as a person. Thus, the very move from the professional’s home ground to the user’s may play an important part in facilitating user involvement.

Through the respect of everyday life rituals, the support worker confirms the user as more than a diagnosis and an assemblage of disabilities and failures, but as a fellow human being and their relation as a reciprocal encounter. Small things might lead to a widening of the user’s discretion.

Then I can let go of something old that has been lying there, and that’s good for everybody to be rid of things that we think are difficult. Like going to the doctor, I put that off for a long time. Or go out and take a walk, that is also something you can put off forever, and can also be the kind of thing that becomes positive and a relief for that, ‘today I actually went out and took a walk, got some fresh air!’ (Maria, user)

A support worker makes a similar observation:

The little things that are so valuable for her. She has her cell phone, she can send messages and things like that. And it was so close that she just gave up on everything. Then I can feel that, yes, the little that I do, what a good job I can do because so little means so much. (Agneta, support worker)

Micro-affirmations are experienced as spontaneous and genuine expressions of acceptance and a non-judgemental attitude. The combination of actual power-sharing and emotional engagement constitutes the very basis for the effectiveness of the helpful relationship.

Discussion

This study provides a picture of user involvement as an integrated part of helpful SIDL services. Both users and support workers described a situation in which the user must be ‘in charge’, with the encouragement and active facilitation of the support worker, not least in the small decisions of everyday life. These findings confirm results from previous research, which describes how helpful SIDL is developed successively in cooperation between the user and the support worker (Andersson, 2009; Brolin et al., 2016).

A paradoxical finding was that formalized user involvement was hardly mentioned as helpful. The ‘support plan’ was mostly not even described in terms of user involvement and many users did not remember being part of its formulation. Criticism was directed at general rules and routines, developed at a central decision-making level, which limited the users’ and the support workers’ frame of action. These results are consistent with research on care planning which has found formalized care plans to be administratively burdensome, largely unhelpful and, at worst, a hindrance to user involvement (Simpson et al., 2016). Instead, the focus of helpful user involvement was on the co-creation of ‘everydayness’ (Skatvedt, 2017).

In this discussion, we will focus on contextual factors that make this type of user involvement possible and its potential role in a recovery process.

An intervention in context

SIDL seems to address the barriers, such as medicalization of user experiences, and facilitators, including respect for the user, which Bee et al. (2015) have found for user involvement. The general view of the relationship between professional helpers and users is that the professional holds a position of power, since the professional has ‘expert knowledge’ (Cutcliff & Happell, 2009). Our findings suggest that the context of the intervention may affect this power relation. Unlike psychiatric care, the aim is not treatment and cure, but to develop ways of managing different aspects of everyday life. Interventions are not based on diagnosis, but on the person’s own appreciation of his or her needs. The intervention’s focus is not illness and shortcomings, but the social life including pleasures connected to it (Davidson et al., 2006). Support workers are social workers, a profession which does not have high status (Beresford et al., 2008), and few have experience from clinical psychiatric settings. The setting of the support is instead the user’s home or public places. The support workers’ position as holders of expert knowledge seemed not to be as clear when the support took place outside clinical settings (Andersson, 2009). These conditions seem to form the basis for new practices in the field of mental health, offering repeated occasions for negotiation more on the user’s terms (Beresford et al., 2008).

The person in context

In many cases, the users and support workers ascribed the users’ involvement not only a practical but also a symbolic value. This recognition of the users’ ability in decision-making has been described as vital in facilitating user involvement (Hickey & Kipping, 2002).

SIDL revolves around aspects of everyday life that to an external observer may appear of negligible importance but have been described as having great importance for the person’s sense of self (Davidson & Strauss, 1992; Topor et al., 2018). Repeated involvement in decisions regarding this kind of support assisted users in gaining greater control over their everyday lives. Regaining a sense of self has been described as a central aspect of recovery, based mainly on experiencing agency and mastery in concrete situations (Roe & Davidson, 2005).

Informal vs formal decision-making

The user involvement studied in this article has been described as an informal and direct user involvement, developed through interaction and dialogue in the actual meeting. This may be viewed as different from the formal user involvement which support plans represent. Although the NBHW’s (2010) recommendations do mention the kind of respectful dialogue we have discussed, there may be a risk that formalized plans, which are obligatory, become regarded as in themselves the only valid form of user involvement (Beresford et al., 2008, p. 1404; Grant & Mandell, 2016). While formalized plans may be seen as a guarantee for the user’s right to support according to their needs, informal decision-making is based upon the users’ and professionals’ capacity to build a working alliance as a ground for co-creation in daily practice.

The results of this study show that such a flexible approach sometimes involved going beyond the framework of rules, policies and support plans. Using Lipsky’s (1980, 1991) classic work, the support workers can be characterized as street-level bureaucrats who follow their own professional discretion and judgement when they find it helpful for the user. This implies that the formal framework could be put aside in the actual meeting between user and support worker. Professionals who go beyond a traditional professional role (Beresford et al., 2008; Borg & Davidson, 2008; Topor & Denhov, 2015) and who let users’ priorities and needs guide the support (Andreasson & Skärsäter, 2012; Ljungberg et al., 2015) have in earlier studies been described as helpful to users.

Conclusion

Both users and support workers described user involvement at the individual, micro-level to be an integral part of helpful SIDL services. Our findings show that it was possible to create a space for dialogue and co-creation in which users were involved in formulating and deciding the contents of their support at an informal level, where they could influence their own everyday lives. While a formal framework of rules, restrictions and plans surrounds meetings between users and professionals, a facilitating factor may be the absence of too detailed plans and regulations, leaving trust to users and professionals and their capacity to manage most of the choices they must make.

Limitations

The reader should keep in mind the contextual situation in the helpful encounters described in this article. The Swedish welfare system assures the user a home of their own (in the case of the informants interviewed here a rented flat) and a basic income. The professionals helping them are social workers, many without psychiatric training, thus the services are normalized and can be offered to other citizens with a variety of impairments.

As mentioned earlier, most users had varying experiences of SIDL. But as our focus is helpful relationships, there is a risk that problematic situations in which it is difficult to establish the kind of dialogue discussed in this article are not explored. Knowledge about ‘non-helpful’ relationships between users and professionals has been explored in a previous article (Ljungberg et al., 2016).

This study does, however, touch on situations such as when the user is unwell or possibly relapsing. A dominating theme is that cooperation with the user needs to be practised in every present situation, rather than following a preconceived plan. The study shows that negotiations with the user are not limited to periods when she/he is well, but rather a dialogical culture established during these periods that also can facilitate communication during more difficult periods.

Footnotes

Authors’ Note

Alain Topor is also affiliated to Department of Mental Health, University of Agder, Kristiansand, Norway.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: The empirical data in this study were gathered in a study done in cooperation between the Department of Social Work at Stockholm University and RD Northeast (FoU Nordost), which is a research and development unit for the social service in seven local authorities in the Stockholm area. The study was completed within the respective organization’s resources, without external funding.

ORCID iD

David Matscheck

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