Four main results of the interviews induced us to believe that we had experienced a co-existence of co-creation and co-destruction processes. The dimensions evoked by interviewees were related to trust, engagement, barriers to change and the importance of a cohesive partnership. Moreover, following Engen’s approach, we also investigated the interaction among all the actors involved in co-production activities.
The importance of trust
Lack of trust emerged as a powerful initial obstacle to co-production that influenced 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 and difficulties in caregiving, and to ask for help from both friends and local institutions. This dimension emerged in multiple forms: towards the institution (ATSP) and towards the project.
“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).
Even if the ATSP is a fully recognized institution in the context of Valle Camonica, it had great difficulties in obtaining the trust of caregivers about participation in the project. This may 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 contact with the ATSP. The reason why the caregivers involved decided to participate and maintain their contribution to the project was that they received clear explanations and constant contacts and interest in their experience from the project team, and especially from 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 how I could actually help with the project”. (Caregiver, female, 8).
However, the trust dimension did not concern only caregivers: during the first co-assessment workshop that took place during the pilot scheme, caregivers complained about insufficient external information and communication, saying that in their opinion few people knew about the project. Caregivers declared that many social workers and general practitioners were not informed about the project.
“I usually go to the support group for caregivers of patients with dementia [at the hospital], 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).
After that claim, members of the ATSP went to practitioners’ conferences in the valley and informed the coordinators of social workers. But during the second co-assessment workshop caregivers still reported that information was not widespread.
As can be seen from the interviews, 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. In regard to this dimension, we can see ambivalence in the co-production: on the one hand, caregivers convinced by the ATSP to participate experienced a positive co-production, participating in the entire project and being positively impressed by the role that the ATSP was assigning them, even if they were doubtful about their effective capacity to make effective proposals.
On the other hand, those who had not been convinced did not participate in any of the appointments organised: neither the co-production scheme nor the support services. In this case, co-production was a positive result even if large participation was not achieved due to a lack of trust in ATSP and university researchers.
The importance of an effective engagement
Evident from the interviews and workshops were difficulties in establishing an effective engagement to which more attention should have been paid. In particular, caregivers who participated felt truly involved in the co-production, but in some cases the research team took decisions without asking them for their opinion, and this created frictions. For example, the research team decided to postpone some events of education/training and support due to the expected low participation of caregivers. The decision was taken “not to 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, for otherwise we’ll never get started. 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).
This claim highlights that caregivers felt insufficiently involved in the decision and asked for explanations. In this case, the engagement created in the co-production prevented this mistake from becoming, following Jarvi’s approach, a cause of co-destruction because this problem emerged in an initial phase of the service delivery, so that we were able to adjust the decision-making mechanism.
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 requiring explanation, and more importantly, they were aware of the importance of participation in the project.
Barriers to change
A significant barrier to successful co-production that could lead to co-destruction is the incapacity to change of both caregivers and providers. However, we asked more in general what had been the main barriers to the project’s success. Interviewees 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 who is 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 induces 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 (care receiver) 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, to use Jarvi’s terminology, an impossibility to change or an inability to change? Probably both: in fact, when the social worker came to the home, our caregivers could quickly go out to do some shopping or run errands, but only when they felt comfortable with the social worker (and this was often 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 required additional human and economic resources that were not available.
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, the fees required for iterative publications and investments in marketing campaigns were particularly expensive, and this was not foreseen because this service was intended to be free and not 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 strengths and weaknesses of a partnership
One of the innovative features of this project was a large and previously rare partnership with two universities and the local services provider. This is rather unusual in the Italian health and service system; hence, in our opinion, it is important to identify strengths and weaknesses in order to inspire and counsel other researchers. In fact, the actors of co-production were caregivers, ATSP representatives, and researchers, while the service eco systems comprised nursing homes, social workers and local communities.
Caregivers were enthusiastic about the partnership. They felt at ease with someone that for the first time listened to them. Moreover, even in the co-production, caregivers gained indirect benefits because they could speak with peers who were experiencing the same difficulties and had direct access to more information.
“When I came here the first time I felt alone and did not know what to do. After hearing other people with same troubles, and also some good suggestions, I felt more empowered” (Caregiver, female, 8)
“Having the possibility to give advice, suggestions and ideas was great even if not easy because it was difficult to find time to participate, but it was the first time that I took some time for myself. Also having universities was something strange but it helped us greatly to give ideas” (Caregiver, male, 10). “Understanding the point of view of caregivers helps us to identify their needs better, you receive more attention. At the same time, it helped us understand what kind of doubts they had about existing services” (research team member, female 2).
“I felt very surprised and grateful for this, even if I knew that I was not doing this for myself because my mother is now in a nursing home, but I hope to help someone not to experience what I felt in terms of loneliness and lack of information. Usually there is not much interaction with service providers, so it was an important new opportunity” (Caregiver, male, 13).
“Laws, projects and services are usually deliberated and approved by people who live in large cities. This project directly involved and put us as thinker and developer of a new service a rural valley. This does not mean that we do not need universities from cities. Universities help us to look to the future, to grasp future directions” (research team member, male 1).
Interviewees expressed great enthusiasm for the cooperation and sense of belonging created by the project. However, the interviews evidenced difficulties of collaboration and coordination within the research team. Firstly, ATSP complained about different expectations in regard to each role and especially related to coordination issues like, for example, the scheduling of the project’s various phases. This emerged clearly in the interviews:
“There is a difference in work style 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 states what we have to do and in what times” (research team member, female, 1).
This reflection was shared within the research group: usually universities tend to give full autonomy to each coordinator of a work 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 within the research group [56] and caused misunderstandings in the co-production process.
Secondly, the meeting style had an impact on the discussion of problems and ways 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).