Inductive analyses of the interview and workshop data led us to identify four barriers to co-production related to trust and engagement, barriers to change and the importance of a cohesive partnership.
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 carers and research team members affirmed that in the context of Vallecamonica, it is still difficult to speak about personal problems 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 team.
“It is typical behaviour of this valley: people participate [in a new activity] only if they know [who the organiser is] or they have received the information by word of mouth” (Research team member, male, 1).
Although the ATSP had great difficulties in promoting participation in the project, the provision of clear explanations, constant contact and interest in the carers’ experiences encouraged carers to participate and maintain their contribution to the project.
“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” (Carer, female, 8).
During the first co-assessment workshop that took place during the pilot scheme, carers identified insufficient external information and communication about the project as a barrier to the project’s effectiveness. They declared that many social workers and general practitioners were not informed about the project.
“I usually go to the support group for carers 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 carers” (Carer, female, 9).
After that claim, members of the ATSP went to practitioners’ conferences in the valley and informed the coordinators of social workers. However, during the second co-assessment workshop, carers still reported that information was not widespread.
Therefore, lack of trust certainly influenced the participation of carers in the initial phase, but the positive relationship established with the ATSP and research team members convinced carers to participate in the entire project because they were positively impressed by the role that the ATSP was assigning them.
Carers who had not been convinced did not participate in any of the organised appointments. In this case, neither the ATSP nor university researchers managed to reduce the initial mistrust of carers towards themselves, negatively influencing the effects of coproduction.
The importance of effective engagement
The results from our analysis of the interviews and workshops reveal difficulties in establishing effective engagement. In particular, carers who participated felt truly involved in the co-production, but in some cases, the research team made decisions without asking them for their opinion, creating friction. For example, the research team decided to postpone some education/training and support events due to the expected low participation of carers. The decision was made “not to involve trainers for only a few people, considering that all of them came for free” (Research team member, male, 1). However, carers contested this decision by stating, “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” (Carer, female, 4).
This claim highlights that carers felt insufficiently involved in the decision and asked for explanations. In this case, the relationship between providers and carers established in the co-production prevented this mistake from becoming a cause of co-destruction. Since this problem emerged during the first co-assessment workshop, which took place in an initial phase of service delivery, we were able to adjust the decision-making mechanism.
It also shows that although there were misunderstandings, the climate within the co-productive team was good because everyone felt at ease in explaining what they believed was wrong and required 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, of both carers and providers, to change. Interviewees revealed that carers find it difficult to leave their care receivers alone for four main reasons. First, carers usually cannot leave their care receivers alone at home, so they must find a substitute who is both professionally trained and accepted by the care receiver. Second, carers usually feel responsible for and engaged in caring activities and do not trust any other person. Third, the distinctive culture of Vallecamonica often encourages citizens to hide their family’s problems, which might be taken as signifying a personal moral failure or weakness. Fourth, the ATSP as a service provider was unable to offer additional home services to encourage participation.
“Leave him (care receiver) alone at home? It’s not possible, and also when the professional carer comes or the social worker, if I go away he starts to scream and cry” (Carer, female, 5).
“I understand you, and I also do not feel comfortable; my professional carer is not able to manage the feeding tube, and so I am always worried” (Carer, male, 10).
“I would like to find a professional carer to have some relief and to participate in these events, but it is very expensive” (Carer, female, 2).
Is this, using Jarvi’s terminology, an impossibility to change or an inability to change? It is likely both; in fact, when the social worker came to the home, our carers could quickly go out to do some shopping or run errands, but only when they felt comfortable with the social worker (which was often not the case). Moreover, it was not possible to provide a specific service for carers involved in the project’s activities because this would have required additional human and economic resources that were not available.
Finally, carers suggested using local mass media to disseminate information about the project; this was done, although 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. Since fees were not foreseen in the project budget, the project team was unable to meet the requirement.
“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 partnership
One of the innovative features of this project was a strong partnership with two universities and the local services provider. To identify its strengths and weaknesses, it is important to include the perspectives of all participants: carers, ATSP representatives and researchers.
Carers were enthusiastic about the partnership. They felt at ease with someone who, for the first time, listened to them. Moreover, even in co-production, carers 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 the same troubles and some good suggestions, I felt more empowered” (Carer, 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” (Carer, male, 10).
“Understanding the point of view of carers 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, although 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” (Carer, 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 thinkers and developers of a new service for 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).
Unlike interviewees who expressed great enthusiasm for the cooperation and sense of belonging created by the project, these interviewees evidenced difficulties in collaboration and coordination within the research team. First, the ATSP complained of a lack of clarification about the team’s roles and coordination.
“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 at what times” (Research team member, female, 1).
Reflecting on these criticisms, researchers admitted that universities usually give full autonomy to each coordinator of a work package; close supervision would be an act of intrusion or lack of trust by the other partners.
Second, the meeting style had an impact on the discussion of problems and ways to manage difficulties.
“We (the 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).
Different organisational cultures led to this difficulty that unfortunately created less cohesion within the research group [65] and caused misunderstandings in the co-production process.