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Introduction: Many studies have investigated patients' understandings of how to optimise mental health services. However, only a few studies in the Italian context have involved experts by experience (EbEs), who can be ex‐users, family members of ex‐users or current service collaborators. Their role is crucial in implementing collaborative service quality assessment projects. Method: The study investigated the experience of 35 EbEs, users, and family members who carried out a 9‐month fortnightly project aimed at imagining an 'ideal service'. The facilitators of the discussion groups (two EbEs) were interviewed; written reports of each meeting were produced with relevant comments, notes and specific suggestions; and content analysis was applied. Results: The most important result concerns the effectiveness of the project management method and group leadership carried out by the two EbEs. This approach allowed for complete autonomy of the work, without professional gaze or power imbalance. Also, the ideas and specific contents focused on by the two groups offer strategies to facilitate users' entry and reception in health care centres, to reduce the stigma of mental illness, to improve the centres' physical environment, to improve organisational aspects, to keep family members actively involved and to network mental health services with other territorial services. Conclusions: EbEs have proven to be key figures in ensuring equity of role in the service co‐design process. This also concerns a context, the Italian one, where their role has not yet been recognised and legalised. Their contribution and ideas to improve services could be fundamental not only in mental health centres, but also in other health facilities, and could concern the entire service delivery process rather than being limited to quality assurance, according to a virtuous circle based on active participation and transformation of the role of users. Patient or Public Contribution: This work resulted from close collaboration between the two EbEs who conducted the groups, users and family members, the university, and the psychiatrist in charge of the service. All of them contributed to the research. The EbEs, researchers and psychiatrist participated in the interpretation of the data and are the co‐authors of this paper. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long‐term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end‐of‐life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. Research Design and Objective: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. Findings: Thirty‐eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. Discussion and Implications: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. Patient or Public Contribution: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript. [ABSTRACT FROM AUTHOR]

Introduction: People with poststroke acquired brain injury (ABI) face a complex and often troubled identity reconstruction journey. The literature is rich with studies related to the psychological and neuropsychological components involved in rehabilitation, but it is lacking with respect to the investigation of the existential dimensions and the challenges associated with finding new senses and meanings for one's identity and future perspectives, body and interpersonal relationships. Methods: The aim of this study is to investigate the narrative processes of identity reconstruction after brain damage. Through a qualitative approach, 30 autobiographical narratives about self, body and the relationships with others were collected and analyzed. Semistructured interviews were used for the data collection. Narrative and positioning analysis were applied. Results: Four main positionings emerged: sanctioning a radical break with one's previous life; assuming a sense of salvation and compulsory as well as irreversible adaptation to the limitations associated with one's condition; feeling different and disabled; and considering new possibilities and active constructions of self‐being in relationship with others. These results underline the narrative processes of construction of the injury and the identity and delineate possible resources and instruments to improve the clinical practice for health practitioners. They are also valuable for other professionals who deal with neurological services and rehabilitation, such as psychological counselling and support for persons who have experienced ABI and their families. Patient or Public Contribution: This work resulted from a close collaboration between two universities and a hospital neurological rehabilitation department in the Veneto Region (Northern Italy). Three associations of people with stroke and their families living in the same area contributed to designing the research on the basis of the needs expressed by their members with the aim to identify strategies and devices to be implemented in the public service to improve the care pathway. They also participated in the interpretation of the data. [ABSTRACT FROM AUTHOR]

Introduction: Despite the publication of clinical practice guidelines, the quality of the care process as experienced by patients with osteoarthritis (OA) appears suboptimal. Hence, this study investigates how patients with OA experience their disease and care process, highlighting potential elements that can enhance or spoil it, to optimise their quality of care. Methods: A qualitative study based on semi‐structured interviews. Patients with hip and knee OA in Italy were interviewed. The interview guide was created by a pool of health professionals and patients. The interviews were analysed through a theme‐based analysis following a philosophy of descriptive phenomenological research. Results: Our analysis revealed seven main themes: (1) Experiencing a sense of uncertainty, as interviewees perceived treatment choices not to be based on medical evidence; (2) Establishing challenging relationships with the self and the other, as they did not feel understood and felt ashamed or hopeless about their condition; (3) Being stuck in one's own or the health professionals' beliefs about the disease management, as a common thought was the perception of movement as something dangerous together with a frequent prescription of passive therapies; (4) Dealing with one's own attitudes towards the disease; Understanding (5) the barriers to and (6) the facilitators of the adherence to therapeutic exercise, which revolve around the therapy cost, the time needed and the patients' willingness to change their life habits and (7) Developing an uneasy relationship with food since the diet was considered as something that "you force yourself to follow" and overeating as a way "to eat your feelings". Conclusion: The lack of clear explanations and a negative attitude towards first‐line nonsurgical treatments (mainly physical exercise), which are considered as a way to fill the time while waiting for surgery, underlines the importance of providing patients with adequate information about OA treatments and to better explain the role of first‐line intervention in the care of OA. This will enhance patient‐centred and shared decision‐making treatments. Patient Contribution: Patients with hip and knee OA participated in creating the interview and contributed with their experience of their care process. [ABSTRACT FROM AUTHOR]