Place4Carers: a multi-method participatory study to co-design, piloting, and transferring a novel psycho-social service for engaging family caregivers in remote rural settings.

BACKGROUND: Family caregivers are key actors in the ageing society. They are mediators between practitioners and patients and usually provide also essential daily services for the elders. However, till now, few services have been deployed to help caregivers in their care tasks as in improving their mental health which can experience sever burden due to caregiving duties. The purpose of the study is to implement a community-based participatory research project to co-design an innovative organizational model of social services for family caregivers of elderly health consumers living in remote rural areas in Italy. METHODS: This is a community-based participatory research project in the remote area of Vallecamonica involving four main phases. These included a quantitative analysis of caregiver needs, a scoping review on existing services for caregivers, co-design workshops with local stakeholders and caregivers to create a novel service the piloting and a first implementation of the service and the assessment of project transferability to other contexts. RESULTS: As the hours dedicated to elder care increases, both objective and developmental caregiver's burden significantly increases. Conversely, higher levels of engagement were associated with lower physical and emotional burden, and caregiver engagement was positively correlated with their perceived self-efficacy in managing disruptive patient behaviours. Based on these preliminary results, four co-design workshops with caregivers were conducted and led to the definition of the SOS caregivers service, built on four pillars structured upon the previous need analysis: a citizens' management board, training courses, peer-to-peer meetings, and project and service information. We found that co-design is an effective means of creating new services for family caregivers, whose experiential knowledge proved to be a key resource for the project team in delivering and managing services. Less positively, the transferability analysis indicated that local municipalities remain reluctant to acknowledge caregivers' pivotal role. CONCLUSIONS: A dedicated support service for caregivers can ameliorate caregiving conditions and engagement levels. The service has resulted a successful co-productive initiative for a psycho-social intervention for family caregivers. For the future, we suggest that family caregiver should be considered an active partner in the process of designing novel psycho-social services and not just as recipients to enhance a better aging-in-place process.

The Evaluation of Determinants and Impacts of Co-Production in Healthcare: A Research Protocol for OPAT in Cystic Fibrosis.

INTRODUCTION: Co-production is more and more considered as a promising tool for dealing with the main challenges in the health sector (e.g., growing rates of chronic diseases, budget constraints, higher patients' expectations of the quality and the value of services, equity to access of care, etc.). However, there is still little evidence on co-production determinants and impacts. DESCRIPTION: This research protocol aims to present a framework to assess the determinants and impacts of the co-productive approach in healthcare delivery on patients, professionals, and providers from economic, organisational, and clinical perspectives. To this end, the paper examines the co-produced outpatient parenteral antimicrobial therapy (OPAT), applied to cystic fibrosis patients in an Italian hospital. A mixed methods approach will be adopted and data will be collected through semi-structured interviews and surveys of patients, caregivers, and professionals; biological samples of patients; archival sources. Then, the analyses to be performed are the following: (i) cost evaluation, (ii) content, (iii) descriptive and inferential statistical, (iv) microbiome analysis, and (v) desk analysis. CONCLUSION: The research protocol contributes to both theoretical and practical knowledge. It represents the first attempt to develop a systematic analytical framework for the evaluation of co-production in healthcare. Moreover, the findings gathered within the study will provide evidence to support policy makers and managers in decision-making and managerial processes within the health service.

Co-Production Performance Evaluation in Healthcare. A Systematic Review of Methods, Tools and Metrics.

Co-produced practices and publications in the healthcare sector are gaining momentum, since they can be a useful tool in addressing the sustainability and resilience challenges of health systems. However, the investigation of positive and, mainly, negative outcomes is still confused and fragmented, and above all, a comprehensive knowledge of the metrics used to assess these outcomes is lacking. To fill this gap, this study aims to systematically review the extant literature to map the methods, tools and metrics used to empirically evaluate co-production in health services. The search took place in six databases: Scopus, Web of Science, Psych INFO, PubMed, Cochrane and CINAHL. A total of 2311 articles were screened and 203 articles were included in the analysis, according to PRISMA guidelines. Findings show that outcomes are mainly investigated through qualitative methods and from the lay actor or provider perspective. Moreover, the detailed categorisation of the quantitative measures found offers a multidimensional performance measurement system and highlights the impact areas where research is needed to develop and test new measures. Findings should also promote improvements in empirical data collection on the multiple faceted co-produced activities and spur the consciousness of the adoption of sustainable co-productive initiatives.

How to prevent and avoid barriers in co-production with family carers living in rural and remote area: an Italian case study.

BACKGROUND: Co-production has been widely recognised as a potential means to reduce the dissatisfaction of citizens, the inefficacy of service providers, and conflicts in relations between the former and the latter. However, the benefits of co-production has begun to be questioned: co-production has often been taken for granted, and its effects may not be effective. To understand and prevent unsuccessful citizen and provider collaboration, the recent literature has begun to focus on the causes of co-destruction. This paper investigates how the barriers that may arise during the co-production of a new social service with family carers can be identified and interpreted. METHODS: To investigate this topic, we undertook a single case study - a longitudinal project (Place4Carers (Graffigna et al., BMJ Open 10:e037570, 2020)) intended to co-produce a new social care service with and for the family carers of elderly patients living in rural and remote areas. We organised collaborative co-assessment workshops and semi-structured interviews to collect the views of family carers and service providers on the co-production process. A reflexive approach was used in the analysis for collecting the opinions of the research team that participated in the co-production process. RESULTS: The analysis revealed four main co-production barriers: lack of trust, lack of effectiveness of engagement, participants' inability (or impossibility) to change and the lack of a cohesive partnership among partners. Despite these findings, the project increases carers' satisfaction, competence and trust in service providers by demonstrating the positive effects of co-production. CONCLUSIONS: Our article confirms that co-creation and co-destruction processes may coexist. The role of researchers and service providers is to prevent or remedy co-destruction effects. To this end, we suggest that in co-production projects, more time should be spent co-assessing the project before, during and after the co-production process. This approach would facilitate the adoption of adjustment actions such as creating mutual trust through conviviality among participants and fostering collaborative research between academia and organisations that are not used to working together.

Facilitating co-production in public services: Empirical evidence from a co-design experience with family caregivers living in a remote and rural area.

The involvement of vulnerable actors in co-production activities is a debated topic in the current public service literature. While vulnerable actors should have the same opportunities to be involved as other actors, they may not have the needed competences, skills and attitudes to contribute to this process.This paper is part of a broader project on family caregivers' engagement in remote and rural areas. In particular, it investigates how to facilitate co-production by looking at four co-design workshops with family caregivers, representatives of a local home care agency and researchers. The transcripts of the workshops were coded using NVivo, and the data were analysed based on the existing theory about co-production.Two main findings were identified from the analysis. First, the adoption of co-production by vulnerable actors may occur in conjunction with other forms of engagement. Second, the interactions among facilitators and providers play a crucial role in encouraging the adoption of co-production. We identified at least two strategies that may help facilitators and providers achieve that goal. However, there is a need for an in-depth understanding of how facilitators and providers should interact to enhance implementation of co-production.

Place4Carers: a mixed-method study protocol for engaging family caregivers in meaningful actions for successful ageing in place.

INTRODUCTION: Engaging family caregivers could be a critical asset to make the 'ageing-in-place' imperative a reality. This is particularly evident in rural and remote areas, where caregivers can fill the gaps that exist due to the fragmentation of the welfare system. However, there is little knowledge about the expectations that family caregivers have from healthcare services in rural and remote areas.Place4Carers (P4C) project aims to co-produce an innovative organisational model of social and healthcare services for family caregivers of older citizens living in Vallecamonica (Italy). The project is expected to facilitate ageing-in-place for older citizens, thus helping caregivers in their daily care activities. METHODS AND ANALYSIS: P4C is a community-based participatory research project featuring five work packages (WPs). WP1 consists of a survey of unmet needs of caregivers and older people receiving services in Vallecamonica. WP2 consists of a scoping literature review to map services that provide interventions of support to caregivers living in remote areas and promote engagement. WP3 organises co-creation workshops with caregivers to co-design, co-manage, and co-assess ideas and proposals for shaping caregiver-oriented services and organisational models. WP3 enriches the results of WP1 (survey) and WP2 (scoping literature review), and aims to co-create new ideas for intervention support with and for caregivers in relation to the objectives, features and characteristics of a new service able to address the caregivers' needs and expectations. WP4 tests the service ideas co-created in WP3 through piloting an intervention based on ideas co-created with caregivers. Finally, WP5 assesses the transferability of the intervention to other similar contexts. ETHICS AND DISSEMINATION: The study has been approved by the Ethics Committees of the Department of Psychology of Università Cattolica del Sacro Cuore and Politecnico of Milan. Results will be disseminated through peer-reviewed journals, scientific meetings and meetings with the general population.