Based on Jarvi’s theoretical framework of analysis, there emerged from the interviews four main results that led to an ambivalent co-production process. The dimensions evoked from interviewees were related to 4 of the 7 causes identified by Jarvi: trust, mistakes and inability both to change and to serve. Moreover, following Engen’s approach, we also investigated the interaction of actors involved in co-production activities.
Insufficient level of trust
Lack of trust emerged as a powerful initial obstacle to co-production that influenced so many refusals to participate in the first stage of the project. Both caregivers and research team members affirmed that in the context of Valle Camonica it is still difficult to speak about health problems, difficulty of caregiving and to ask for help, both to friends and to local institutions.
“It is typical behaviour of this valley: people participate [in a new activity] only if they know [who is the organizer] or they have received the information by word of mouth” (research team member, male, 1).
The ATSP, even if it is a fully recognized institution in the context of Valle Camonica, had great difficulties in receiving the trust from caregivers to participate in the project. This could also have been related to a lack of knowledge about the benefits of the project, but caregivers who participated stated that the objectives and their role was clear from the first moment of the contact with the ATSP. The reason why involved caregivers decided to participate and maintain their contribution to the project was that they received clarity of explanation and constant contacts and interest in their experience from the team project and especially with ATSP.
“The first time I was doubtful, what did they want from me? It was the first time. I was afraid that I would have to pay. But when I met …. Of the ATSP I changed my mind. He explained the project to me, my role and I was really happy to participate, even if I wasn’t sure of how I could actually help for the project”. (Caregiver, female, 8).
Lack of trust certainly influenced the participation of caregivers in the initial phase, but those who participated created a positive relationship with the ATSP and research team members that led to a successful co-production. For this dimension, we can see ambivalence of the co-production among people that had not been able, or the research team had not been sufficiently persuasive, to overtake the initial lack of trust.
Mistakes
From interviewees and workshops, two possible causes of co-destruction emerged in the words of caregivers and research team members that could be associated with what Jarvi categorizes as mistakes.
The first one was related to the methods adopted to engage caregivers in some tasks of the coproduction. Some situations embarrassed caregivers who didn’t feel able to help in this creative part of the project. Caregivers were not used to these processes that included creative tasks, and the research group was not able to engage caregivers more closely in these tasks, which were part of the co-production.
Another important aspect concerned the postponement of some events of education/training and support due to the low participation expected by the research team. The decision was taken to
not involve trainers for only a few people, considering that all of them came for free” (research team member, male, 1)
However, caregivers contested this decision by stating that “Even if there is low participation, we have to start with something, it is important, otherwise we’ll never get started”. (caregiver, female, 4).
This claim highlights that caregivers felt not sufficiently involved in the decision and asked for explanations. It also shows that even if there were misunderstandings, the climate within the co-productive team was good because everyone felt at ease in explaining what they found wrong and asking for explanation, and more importantly, they were aware of the importance of participation in the project. This emerges clearly from interviewees:
“I absolutely understand the reasons why you cancelled some meetings, and I was not angry but sorry because I need these moments and I would have preferred few participants but maybe the possibility to speak, get some relief” (caregiver, female, 4).
Inability to change
In line with Jarvi et al.’s framework, we confirmed that co-production can turn into a co-destruction process when both providers and users are not able to change to new ways of behaving and new contexts.
In regard to why many caregivers withdraw from participation in co-production workshops and piloting activities shortly beforehand, results revealed that caregivers find it difficult to leave their care receivers alone for four main reasons. First, caregivers usually cannot leave their care receivers alone at home, so that they must find a substitute both professionally trained and accepted by the care receiver. Second, caregivers usually feel responsible for and engaged in caring activities and do not trust any other person. Third, the distinctive culture of Valle Camonica often incentivize citizens to hide their family’s problems, which might reveal their personal weaknesses. Fourth, the ATSP as a service provider was unable to offer additional home service to encourage participation.
“Leave him (carereceiver) alone at home? It’s not possible, and also when the professional caregiver comes or the social worker, if I go away he starts to scream and cry. (Caregiver, female, 5).
“I understand you, and I also do not feel comfortable, my professional caregiver is not able to manage the feeding tube and so I am always worried” (Caregiver, male, 10)
“ I would like to find a professional caregiver to have some relief and to participate in these events, but it is very expensive” (Caregiver, female, 2).
Is this an impossibility to change or an inability to change? Probably both: actually, when the social worker comes to the home, our caregivers can quickly go out to do some shopping or run errands, but only when they feel comfortable with the social worker (and often this is not the case). Moreover, it was not possible to provide a specific service for caregivers when involved in the project’s activities because this would have implied additional human and economic resources that were not accessible.
Inability to serve
We verified the inability to serve as a possible cause of co-destruction. In our case, this dimension arose from the providers’ inabilities to meet in the piloting phase the requests and decisions set during the co-production activities. The results of both interviews and assessment workshops revealed three main inabilities of the research team.
First, during the first assessment workshop that took place during the pilot scheme, caregivers complained about insufficient external information and communication, saying that in their opinion few people were informed about the project. Caregivers declared that many social workers and general practitioners were not informed about the project.
“My social worker came to my home and I asked her if there were any projects for caregivers in the valley, and she said no. But I was already participating in one, so she was not informed about the project. This is a problem that has to be solved” (Caregiver, female, 5).
After that claim, members of the ATSP went to practitioners’ conferences in the context of the valley and informed coordinators of social workers, but caregivers during the second assessment workshop still reported that information was not widespread. This has surely influenced the results on caregivers’ engagement and highlighted the difficulty of creating a cohesive partnership with actors outside the project but important in the healthcare and social system of the valley.
Second, caregivers complained about the inability of the project team to cooperate or at least coordinate the proposed service with similar services for family caregivers in the valley. The research team contacted another service present in the valley for psychological support, but it was not possible to create a partnership with it, due to problems of programming activities and responsibilities but, more importantly, for a lack of collaboration that was an important issue in the valley. As a result, some overlaps with the other local service occurred, possibly reducing the number of participants in the service’s activities.
“I usually go to the support group for caregivers of patients with dementia, and they didn’t know about the project. I think it is important to connect different initiatives that all together can reach all caregivers” (Caregiver, female, 9).
Finally, caregivers suggested using local mass media to disseminate information about the project. This was done, but in a weak format (some interviews and short news items in local newspapers). As stated by the ATSP, requested fees for iterative publications and investments on marketing campaign have been particularly expensive, and this was not forecasted as this service was intended for free and not as a commercial service.
“I was a little bit disappointed by local journalists because they asked for a fee like it was a normal commercial spot?. This is a free service to our people!” (research team member, male 1).
The difficulty of creating a cohesive partnership
By looking at this initial results, we also wanted to understand if difficulties in co-production were related with problems of coordination inside the research group. This led us to reflect on collaborative dimension in the project. Actually, the actors of co-production were caregivers, ATSP representatives, researchers, while the eco systems involved included nursing homes, social workers and local communities. According to our perspective, some failures in the co-creation process were due to the non-cohesiveness of the network of actors, which turned out to be a bidirectional relationship between the ATSP and universities
Caregivers, social workers, local communities were left outside. In our interviews, when exploring possible causes of negative results, the focus was always on the relationship between ATSP and universities, and not on the relationship with caregivers. Many explanations might be possible: one consists in the lack of trust in involving caregivers, as previously discussed, another in some errors made before and during the collaborative phase. Before, the lack of alignment between Universities and ATSP on the nature of coproducing activities. During, a set of managerial tools and way of working that researchers were used to adopt, while local service providers usually not.
Interviews evidenced difficulties of collaboration and coordination within the research team. Firstly, ATSP lamented different expectations about each role and especially related to the coordination as for example with time schedule of the different phases of the project. This emerged clearly in the interviews:
“There is a difference in style of working between universities and local service providers. Universities are more flexible, giving more autonomy to partners to achieve their results. We (the local home care agency) need more supervision, someone that clearly says what we have to do and in what times” (research team member, female, 1).
This reflection has been shared inside the research group: usually universities tend to give full autonomy to each coordinator of a working package and a close supervision would be an act of intrusion or lack of trust by the other partners. Different organizational cultures led to this difficulty that, unfortunately, created less cohesion inside the research group [54] and created misunderstandings in the co-production process.
Secondly, the meeting style had an impact on the discussion of problems and possibilities to manage difficulties.
“We (ATSP) are not used to making rapid skype or conference calls, I was not comfortable in explaining difficulties and problems about the piloting” (research member, male, 1).
“We usually have a weekly meeting, not long, but just to share news and difficulties within each project. We missed that part, we need constant feedback. (research member, female, 1).