In this section we analyze tinkering as a collective practice, focusing on three types of collectives: (1) a care team including clients and family members; (2), a care team including clients, family members and other care/community organizations; and (3) a collective of clients for whom care arrangements are created. Each theme discusses tinkering in a complex situation that occurred in both teams, that various team members mentioned, and that focus group participants recognized as complex.
Tinkering in teams including family members
A complex situation highlighted by many professionals is when clients neglect to do the grocery shopping they feel is required. One example of tinkering within a team is the case of John (all names are changed). John has an intellectual disability and has suffered psychotic episodes. He lives in an apartment owned by a social housing company a few blocks away from the communal home and office of the care professionals. John has a weekly grocery allowance. Responsible for his own money and meals, John gains self-determination and practices with an independent lifestyle. Impulsively, however, he often buys expensive takeaways or flowers for his girlfriend, leaving him without money to buy food at the end of the week. This then puts professionals in a difficult situation as they also want to prevent the harm of John not eating properly.
John’s contact moments are provided by the team members scheduled for that day. The team needs to work collectively to align their approach, for when he comes to the care unit to ask for food because he is out of money. John’s sister is also involved as he asks if he can eat at her place. The sister doesn’t mind having John over but wants him to learn how to take care of himself. This situation requires the team, with the sister, to arrange the values of self-determination and independence while preventing the harm of not having food. Their collective tinkering involves chatting in the team on shift, at shift transition meetings as well as formal discussions of cases at bi-weekly team meetings. This structure fosters team communication about clients, it does not include clients or family members. Family involvement depends on the efforts of individual professionals. One of John’s professionals keeps in touch with the sister, frequently discussing his situation on the phone and asking for her input.
Needing to find a way to arrange these values, the team experimented on doing the grocery shopping with John. The practice was then consolidated in John’s care plan and the schedule that structures the professionals’ daily tasks.
“We see him every week. Then he gets his grocery allowance, signs for it and we do the food shopping together, for the whole week. He’s really good at it, always buys healthy products, and he’s a super cook. In his case you present the organization’s rules with sort of white lie. You tell him, we need to come along because we need your receipt for the bookkeeping. Every now and then it goes well, maybe twice in a row, and then we say, go on your own, but then it goes wrong again and on Sunday he’ll turn up at the care unit because he’s run out of food and wants to eat with us or asks for bread. Well then, you take over again, make him go shopping with you but you only follow him, you needn’t do a thing. Just the fact you’re there limits him in his self-determination because he feels he has to do things right.”
This is not a one-time decision but an iterative process, evaluated and adjusted when necessary. Professionals experiment with what John can do by himself, attentively observing what happens and adjusting their actions accordingly. However, this arrangement creates tension with other values, of being honest with John – why they go grocery shopping with him – and of helping him sustain the positive self-identity of a ‘big man’ capable of handling his own housekeeping. The ontology worked up about John is of someone capable of making healthy choices and cooking for himself but hindered by poor impulse control. The values and ontology are then assembled in the care practice of presenting grocery shopping to John with a white lie: they tell him the care organization demands receipts from clients under curation.
In John’s case different values and ontologies are assembled in one care practice. The case of Jesse (team 1), however, shows that collective tinkering does not always happen, which impacts the quality of care. In this case the client neglects his house. It is contrasted with the case of Max, cared for by team 2, who does the same but collective tinkering within the team does happen.
In Jesse’s case- as is described in the introduction- the values of preventing harm by having a hygienic household, promoting an independent lifestyle, self-determination and attuning to Jesses vulnerabilities are in tension. The problems for Max are much the same as Jesse’s. He lives in a 10m2 room in the communal house, bordering the living room. His room is crowded as he moved in from a big apartment and brought along all his precious possessions. The only free walking space in the room, surrounding his bed, is full of dirty dishes and laundry, trash and cigarette ash.
In both cases, team members differ on how they work up the reality of who the client is, and which values should be prioritized. In Max’s case, some team members see his unhygienic living conditions as due to personal incompetence. Others see Max as someone able, but not willing. These different ontologies evoke different values in caring for Max. If Max is incompetent, good care involves helping him clean. If Max is competent but unwilling, helping him would hinder his goals to live independently one day. The team agrees that living in neglect will pose harm to Max. Something has to change. The team organizes his care collectively. Daily tasks, such as reminding Max to clean his room, are put on an agenda that the professionals who happen to work that shift execute. The team discusses Max’s case at the twice daily handover meeting between shifts or at their bi-weekly meetings.
This is different for Jesse as team 1 has limited structures in place to discuss clients. Clients are cared for individually, with one or two caretakers making appointments with the client. This team has no meetings between shifts, where they discuss all clients, only monthly meetings where they discuss only those clients who the professionals have put on the agenda. In Jesse’s case, some professionals in the team stress the value of self-determination, pointing out that Jesse might not share the norms of having a tidy house that other team members might have, and that the entire team should abide by how Jesse wants to live. Other team members emphasize the value of preventing harm from living in unhygienic conditions. Although the team discusses Jesse’s case, they do not negotiate on the different values. The professionals favoring the value of self-determination simply convince the others that good care for Jesse means following his wishes. The team decides to stop helping him clean his room.
“So I have this client who everyone finds really smelly and difficult. And they have a point, he is a bit stinky. When it comes to cleaning, he just lets things go. So I try to tell the team that we’re not talking about ‘Mr. Stinky’, we’re talking about Jesse, who’s just like… like… anyone else and a very smart guy. But Jesse says: ‘I don’t like things clean and tidy.’ We have to know that, we have to understand how it works for him, and we shouldn’t go there every Friday and make him feel uncomfortable by cleaning up his place.”
Instead his care professionals do sometimes nudge him to clean his room. For instance, by reminding him his laundry will start smelling bad if he doesn’t launder it soon. This however seems to have limited effect in terms of the state of Jesse’s house and thereby only limitedly attends to the tension between the value of self-determination and other values such as preventing harm from living in neglect. Not attending to this ongoing value tension stops the team from inventing experiments that would assemble the different values and create ‘better’ care. Moreover, the team excludes the views of Jesse’s mother from the conversation. She contacts the professionals several times, expressing her concern about the possible harm of living in neglect and feels that the approach chosen does not foster an independent lifestyle. While the professional holds an ontology of Jesse as someone capable of deciding for himself on his household, mother’s ontology is different. She does not see him as fully capable. Instead, she pictures him as being too hindered by his symptoms to accept help in cleaning.
“At one point I thought, this room is filthy. The professionals kept pointing to his autonomy. I said, ‘The situation is out of control and he was offered help, so will someone from [care organization] please help Jesse clean his room.’ Well, Jesse didn't want that. Because you’re touching his stuff, I get it. But they could have taken a structured approach. It would’ve benefited him, being able to do his own cleaning in due course. […] Of course he’d say no. That’s part of his schizophrenia, to say no to that sort of thing. It fits the diagnosis. Just say no […]. But you start thinking, it must go wrong sometime, he’ll either get food poisoning or some other nasty disease.”
The team did not take the mother’s view into account in their decision on how to care for Jesse. This not only limits their creativity in crafting care practices that arrange the differing values, it leaves the mother feeling that Jesse is not receiving good care.
In contrast, team members realized that for Max, emphasizing the value of self-determination and leaving him in neglect simply does not work as it evokes ongoing tension with the value of preventing harm. This tension fosters a creative experimentation process to find ways to not interfere with Max’s autonomy yet improve his hygiene. They follow these experiments closely and invent new ones when they do not work. Failed experiments include reminding Max to clean his room, telling him the consequences of not cleaning and to thoroughly cleaning his room themselves when he is on holiday. Some interventions disturbed Max, and none led to cleaner conditions in the long run. The team then decided to arrange for a professional to come help him every other week. This seemed to have a better effect and even Max was content. As he explained to me when we were eating a jelly pie he had made, he now feels he has more ‘living space’.
Even though in Max’s case it looks like collaborative tinkering created ‘better care’, this is not the end of the story. While team members agreed on the assemblage of values in the experiment, they still held different ontologies on who Max is. Some felt that Max should get ongoing help as clearly, he could not keep his room tidy on his own. Others felt that helping him clean risked keeping him lazy and would stop him from being able to do his own housekeeping in due time. For these team members the tension between the values of preventing harm and developing independence persist. This ongoing tension might motivate the team collective to invent new experiments negotiating these values in the future.
As in Johns’ case, both Jesse and Max were left out of the team’s collective tinkering process. While some ontologies and values put forward may have been influenced by conversations with Max and Jesse, they were not involved in assembling the care practice. Team members decided on what represents value for clients and who they make themselves up to be, in ways that may not altogether align with clients’ own views. In Jesse’s case, where care is crafted on the single value of self-determination, his view on housekeeping seems dominant. In terms of tinkering, however, this is not ‘good care’. Jesse was left out of the decision to exclude the values of independent lifestyle and preventing harm from his care practice. The teams barely considered material arrangements that co-constitute the tensions between values and ontologies. This is especially clear in Max’s case. He points to the importance of material arrangements in constituting his situation. Interviewed, Max felt that his ‘neglect’ was caused by not having enough space to keep all his valuables because he had moved in from a larger apartment. As far as he was concerned, he is not lazy, because he does valuable work as a DJ on his own online radio station. He prefers the privacy of his room above sitting in the communal areas but due to the limited space he cannot work anywhere else than in bed. If the team had considered Max’s values, his definition of himself and the material arrangement, it might have fostered the development of care practices that better fit his needs.
In conclusion, tinkering collectively with both professional teams and family members brings together a multitude of values and ontologies and that creates tensions. When tensions are attuned to, teams and family members may invent care practices that assemble the various values and ontologies. Attentively following and adjusting the experiments may lead to providing good care. Collective tinkering requires a consideration of material arrangements and depends on structures that permit team members to discuss clients together. Both care teams 1 and 2 lack the structure to tinker collectively with family members, which makes family involvement highly dependent on the efforts of team members. Opposed to tinkering in professional – client relationships, clients are seldom involved in nor structured into collective tinkering.
Tinkering in teams including other care/community organizations
The second type of collective tinkering we analyzed takes place between team members and other care and community organizations. Clients receive care from many organizations, for instance day centers, (sheltered) job facilities and obtain specialist treatment in mental health services.
A complex situation both teams encounter is when clients make friends with people who manipulate them into criminal activities. This then requires collective tinkering with a wide range of organizations, including other care organizations, local police and the municipality. Both teams had cases in which clients were manipulated into money laundry or growing marihuana in their homes. In care team 2 this situation involved John. John wanted friends and let a few ‘cool men’ befriend him. They often spent time in his home and one of the men even slept on his couch. John’s sister found out about this and suspected possible harm. She questioned the good intentions of the men and wondered if John really desired this situation or if he was simple not capable of refusing the men. She contacted the care professional who took her concern seriously.
“He’s looking for friends, of course, but they’re not always the right friends. […] Once I wanted to come over and he said, ‘No, you can’t,’ and he was so stressed. I found his response very strange. So I went on asking about it and finally he said there were men in his house who didn’t want to leave. So I told the professional, who took it very seriously and looked into it straight away. And it turned out that there were indeed men living in his house who were homeless themselves. So there too you have this question of self-determination. But how far do you let the situation go? […] Those men were just taking advantage. John didn’t know how to solve the problem. And he didn’t ask for help because he thinks of himself as, let’s say, a ‘big man’ who should solve his own problems. I get that too, but naturally the solution is to ask for help. He finds that hard.”
The professional found out that John had given the men access to his bank account and they were money laundering, depositing criminally obtained money and withdrawing it in cash on John’s bankcard. They also put several mobile telephone subscriptions on John’s account. John collaborated in this as the men offered him a few Euros in return, making John feel he was one of the ‘big men’ which is what he wanted. Different values were in tension here. John’s bank account facilitated self-determination on spending some of his money and fostered an independent lifestyle because he could do some of his own shopping. After some deliberation, the care team and John’s sister decided that the situation posed too great of risk for John and they crafted a care arrangement for his money to be kept under curation.
Later on, John wanted to fix up his house, but not having a lot of money he posted an ad on Facebook asking who might want to help him. A few men replied. So far John’s situation follows the autonomy-related value of community participation. One of the men didn’t have anywhere to live and proposed living with John while he worked on his house. One of the team members learned of this and suspected potential harm. A professional with a good relationship with John tried to find out more about the situation and learned the names and home village of the men. He contacted a care professional he knew in that village to get information about the men. This care professional knew the men and suspected they wanted to use John’s house to grow marihuana. This unfolding tension then required assembling the values at stake: John’s self-determination versus preventing John from the harm of complicity in criminal activity. John’s ontology of himself also needed to be part of the negotiation, or at least the professionals’ representation of it. As John was perceived to see himself as ‘a big man’ he would not easily accept that these men were not his friends but were using him. The professionals from the different care organizations did not want to harm Johns’ self-esteem by trying to convince him that he was being used. Thus, they crafted a care practice assembling the values and ontologies. The care professional who knew the men would inform them that John’s care organization had eyes on them and the police would be called if they pursued criminal activities. The experiment worked: the men stopped seeing John and John had his house to himself again, which sadly was not fixed up but left rather decrepit. This incident made another tension clear. As John lived a few blocks away from the care unit and rented his own house from the social housing company, his care workers had little oversight. This material arrangement contributed to the professionals being quite late in picking up the potential harmful situation and were limited in their interventions as they were not allowed to enter the house, change the lock or set rules about who could come in. These values were assembled in a new material arrangement by moving John closer to the care office into a unit owned by the care organization. This also required the involvement of a wider collective of stakeholders, such as the manager agreeing to the move and the care organization providing one of their houses. For John, having friends and being one of the ‘big boys’ was also an important value at stake which, however, this new care arrangement did not address so much.
In conclusion, as people move to community settings and participate more in the community, this enlarges the potential care network with other people and other organizations. Material arrangements also co-constitute care practice. This requires professionals to work collectively in networks and take the material arrangements into consideration. To provide good care, tinkering transgresses the borders of the assisted-housing service. However, daily care practices are not structured for this type of collective tinkering. Whether or not it happens, and who is involved, depends on the quality of the professionals’ relationships with others in the care network and the personal efforts made by individual professionals.
Tinkering for a collective of clients
Collective tinkering not only happens in relation to individual clients. When creating care practices for a collective of clients, values and ontologies also require negotiation. This may also involve other layers in the care organization beyond the team, such as managers working on an organizational level. A complex situation both teams mentioned centers on clients’ loneliness. One care practice addressing loneliness for a collective of clients involves organizing ‘coffee moments’. Here again different values and ontologies need to be negotiated. On the one hand, coffee moments are seen as potentially limiting community participation, as clients are then less inclined to seek social contact in the community. On the other hand, coffee moments are seen as providing a place for peer support in a safe space, where stigma is limited. Here the values of community participation and providing peer support are in tension. Meanwhile, multiple ontologies of clients are evoked: as clients capable of engaging in social relations in the community and as vulnerable clients needing a safe space to foster social contact. One professional in the first team voices these tensions:
“Some professionals believe in group stuff, while I believe in the individual approach. Group sessions are nice, having coffee once in a while […] and catching up with others. Like on Sundays when the activity centers are closed. But don’t have coffee moments for the sake of having them, every day a cup of coffee. They should go to an activity center, or a cafe. Then they’ll meet new people and join the community. When they ended up in the healthcare system, they were cut off by society. And now they are allowed back in again. So let them try, for God’s sake. Don’t arrange things in-house if it’s not needed otherwise they’ll never meet other people, be in the community.”
The two teams assembled these tensions differently, resulting in different arrangements for the coffee moments. Care team 1 organizes coffee moments on Sundays only, as this is when most community options for socializing are closed. This is reflected in the material aspects of this arrangement. The space where the coffee moments take place is not inviting. It looks like a conference room and is in fact the same space were team meetings take place. In care team 2, the value of offering peer support in a stigma-free environment resonates more with the team members, as is expressed by the following quote.
“It is important to facilitate […] those coffee moments. You could call that inward-looking. But Ryan, with snot in his hair and Emma, who stinks, they’re not going to be invited into people’s homes. But they do come to these coffee moments. And so you bring them together. Nobody here ever says, ‘Did you notice how badly Emma smelled? Or how filthy Ryan is?’”
Care team 2 arranges coffee moments twice a day in the communal living space of one of the houses where resident’s live together. This material arrangement adds to the homely sphere. Clients who receive care from this team but live independently are welcome too. This way of organizing coffee moments was under threat as managers on the organization level introduced a policy to arrange housing in such a way that every client has ‘their own front door’. This policy was introduced to materialize the value of living an independent lifestyle. Due to this policy, care team 2 was in the middle of re-organizing the housing situation. Service users were moved one-by-one to their own apartment, each with their own kitchen and living space. This rearrangement led to the demise of the coffee moments as this new set-up offered limited space for organizing communal moments. Social contact for service users was also reduced as clients could now more easily decide for themselves to stop socializing with their neighboring service users, as they no longer shared a house and occasional coffee moments were no longer in their own home. This example makes clear not only that professionals need to adapt care practice for a collective of clients but also that collective-client practices are enabled or limited by other layers in the care organization, such as managers.
The new context required inventing new experiments in assembling the values of promoting well-being through social contact, self-determination and independent living. The value of preventing harm was also part of this assemblage as professionals feared lonely clients would be more prone to engage with people who could take advantage of them (see the example of John). The team experimented with connecting service users to community organizations that arrange ‘buddy contact’. Although the team felt this was not the best way to facilitate social contact, the corporate ‘own-front-door’ policy for service users limited their ability to provide the social contact they wanted, through regular, easily accessible coffee moments. Here, the team and organization managers undertook no collective tinkering, no experimenting with other material arrangements to assemble the values of providing social contact and fostering an independent lifestyle.
In sum, teams tinker collectively in creating care practices for the client collective. These arrangements need to handle the tensions between values and ontologies by assembling them differently and adjusting them to the ever-changing contexts. Here other stakeholders, such as managers may be implicated. Adding to previous points on the lack of structure for collective tinkering, this case shows that teams may have limited means in tinkering with organization-wide policies that impact care practices.