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Background: Partnership research practices involving various stakeholder groups are gaining ground. Yet, the research community is still exploring how to effectively coproduce research together. This study describes (a) key programme developments in the creation of a 6‐year partnership research programme in Sweden, and (b) explores the hopes, expectations, and experiences of patient innovators (i.e., individuals with lived experience as patients or caregivers who drive health innovations) and researchers involved in the programme during the first years. Methods: We conducted a prospective longitudinal qualitative study spanning the first 2 years of the programme. Data consisted of meeting protocols and interviews with 14 researchers and 6 patient innovators; 39 interviews were carried out in three evenly‐spaced rounds. We identified significant events and discussion themes in the meeting protocols and analyzed the interviews using thematic analysis, applying a cross‐sectional recurrent approach to track changes over time. Findings: Meeting protocols revealed how several partnership practices (e.g., programme management team, task forces, role description document) were cocreated, supporting the sharing of power and responsibilities among programme members. Based on the analysis of interviews, we created three themes: (1) paving the path to a better tomorrow, reflecting programme members' high expectations; (2) going on a road trip together, reflecting experiences of finding new roles and learning how to cocreate; (3) finding the tempo: from talking to doing, reflecting experiences of managing challenges and becoming productive as a team. Conclusions: Our findings suggest that sharing, respecting, and acknowledging each other's experiences and concerns helps build mutual trust and shape partnership practices. High expectations beyond research productivity suggest that we need to consider outcomes at different levels, from the individual to society, when evaluating the impact of partnership research. Patient or Public Contribution: The research team included members with formal experiences as researchers and members with lived experiences of being a patient or informal caregiver. One patient innovator coauthored this paper and contributed to all aspects of the research, including the design of the study; production of data (as interviewee); interpretation of findings; and drafting the manuscript. [ABSTRACT FROM AUTHOR]

Introduction: Parkinson's Disease (PD) is a complex neurodegenerative disease resulting in a wide range of motor and nonmotor symptoms for which the treatment regimen is often complex. People with Parkinson's (PwP) spend time daily on self‐care practices including self‐tracking signs and symptoms or seeking disease‐specific knowledge. Research suggests self‐care interventions yield promising care and health outputs for PwP, yet most research focuses on the provider perspective rather than that of those conducting the self‐care. This study explores the meaning of self‐care, disease‐specific knowledge, and self‐tracking from the perspective of PwP in Sweden. Methods: Qualitative data from three data sets were analyzed and compared using qualitative content analysis: one focus group on self‐care (n = 14), one free‐text survey on disease‐specific knowledge (n = 197) and one free‐text survey on self‐tracking (n = 33). Findings: The analysis resulted in three categories: illness‐related tasks, internal resources and external resources. Illness‐related tasks describe various tasks PwP carry out in self‐care, including lifestyle choices, treatments, and self‐tracking. Internal resources include personal knowledge/skills as well as mindsets which could facilitate or challenge completing these tasks. Finally, external resources include other PwP, literature, clinicians and other sources of disease‐specific knowledge. Self‐care was found to fluctuate between beneficial and burdensome depending on such resources. Conclusions: In conclusion, self‐care needs to be acknowledged and discussed more often in PD and other complex conditions. Future self‐care interventions should consider self‐tracking and disease‐specific knowledge as well as internal and external resources in their design and implementation. Patient or Public Contribution: A researcher with PD was actively involved in all phases of the research: study design, data collection and analysis, and preparing the manuscript. [ABSTRACT FROM AUTHOR]

Background: Because of the shift towards earlier diagnosis of dementia and/or Alzheimer's disease (AD), increasing numbers of individuals with subjective cognitive decline (SCD) and mild cognitive impairment (MCI) are seen in memory clinics. Yet, evidence indicates that there is room for improvement when it comes to tailoring of the diagnostic work‐up to the needs of individual patients. To optimize the quality of care, we explored patients' perspectives regarding the diagnostic work‐up at a specialized memory clinic. Methods: This interview study was conducted at Karolinska University Hospital (Sweden). The comprehensive diagnostic work‐up for dementia at the memory clinic in Solna is conducted within 1 week. A sample of 15 patients (8 female; mean age = 61 years [range 50–72]; 11 SCD, 1 MCI and 3 AD dementia) was purposively selected for a series of three semistructured interviews, focussing on (1) needs and expectations (during the week of diagnostic testing), (2) experiences (within 2 weeks after test‐result disclosure) and (3) reflections and evaluation (3 months after disclosure). Transcribed audio‐recorded data were analyzed using thematic content analysis (using MaxQDA software). Results: Three key themes were identified: (1) the expectations and motivations of individuals for visiting the memory clinic strongly impacted their experience; (2) the diagnostic work‐up impacted individuals psychosocially and (3) the diagnostic work‐up provided an opportunity to motivate individuals to adopt a healthier lifestyle. Conclusion: Our findings underscore the importance of enquiring about the expectations and needs of individuals referred to a specialized memory clinic, allowing for expectation management and personalization of provided information/advice, and potentially informing the selection of patients in need of a comprehensive diagnostic work‐up. Structural guidance might be needed to support those with SCD and MCI to help them cope with uncertainty, potentially resolve their issues, and/or stimulate brain health. Patient or Public Contribution: We gathered the perspectives of 15 individuals who had been referred to the memory clinic at three different time points through semistructured interviews, and these interviews were the primary data source. [ABSTRACT FROM AUTHOR]

Background and objective: End‐stage renal disease (ESRD) affects a multitude of aspects in the patient's daily life, often entailing their own involvement in various aspects of the treatment. Although patient participation is a core health‐care value, what the concept signifies is not yet fully known. The purpose of this paper is to conceptualize patient participation in dialysis care, depicting patients' and health‐care professionals' perspectives. Design: This explorative study employed qualitative interviews and content analysis. Setting and participants: Seven focus group discussions engaging 42 key informants were performed, including patients, staff and managers with experience of dialysis care. Results: In dialysis care, patient participation connotes a sharing of information and knowledge, the learning of and planning of care, including partaking in shared decisions with regards to treatment and management, and being involved in the management of one's own health‐care treatment and/or self‐care activities. Although these attributes were illustrated by all stakeholders, their significance varied: patients suggested that their preferences regarding primary aspects of participation vary, while staff considered patients' performance of dialysis to be the ultimate form of participation. Further, while patients considered multiple ways to execute participation, staff suggested that aspects such as sharing information were a route to, rather than actual, involvement. Conclusions: Without a common understanding to denote the idea of patient participation, staff and patients are exposed to a potential deficit in terms of facilitating patient participation in everyday encounters of dialysis treatment. Further studies and means to serve a mutual understanding are needed. [ABSTRACT FROM AUTHOR]

Background: Prostate cancer is one of the most common types of cancer in men and could occur without symptoms. Screening has been debated but remains controversial and, in most countries, organized population‐based screening does not exist. The aim of this study was to describe men's experiences of receiving a prostate cancer diagnosis after opportunistic screening. Methods: This study is a secondary analysis from interviews with 17 men (aged 56–80 years) who had undergone curative treatment for prostate cancer. Data were collected in an urban region of Sweden through interviews conducted face to face or by telephone. An inductive content analysis was used with Consolidated criteria for Reporting Qualitative research as a reporting checklist. Results: Two main categories were identified. Screening is a lifesaver enclosed by ethical dilemmas reflects how men considered screening as a lifesaving test. Testing was surrounded by injustice and an eagerness to encourage other men to undergo screening. Facing challenges during diagnosis reflects the men's experiences of being in an unknown field yet expected to engage in decision‐making concerning appropriate treatment. Receiving the diagnosis rendered mixed emotions about having a cancer disease, that the treatment could cause lifelong symptom distress and the men described being hesitant to talk about their diagnosis. Conclusions: The findings highlight men's opinions about screening and that the lack of routine screening represents injustice. The men considered this as an ethical question of lifesaving justice, while stakeholders may argue that screening could lead to unnecessary suffering and overtreatment. Men do not always talk openly about their diagnosis, linked to the fact that it concerns intimate areas. It is important to balance the information in relation to shared decision‐making regarding treatment. Health care professionals have an ethical responsibility to support and coach the patient in their decision. Patient or Public Contribution: This study was based on interviews with men who had experienced a diagnosis of prostate cancer. [ABSTRACT FROM AUTHOR]

Introduction: This study pertains to the design of a decision aid (DA) to shed light on information and support needs in colorectal cancer screening, with the aim to explore the calling patterns to the Screening of Swedish Colons (SCREESCO) study's helpline. Methods: A cross‐sectional study was conducted with data from documented telephone calls to the SCREESCO study, including individuals, 59–60 years, randomized to colonoscopy or high sensitive faecal immunochemical test (FIT). Results: More than 2000 calls (women 58.5%; colonoscopy 59%) were analysed. Calling patterns: unsubscribing from screening, confirmation of participation, logistical concerns about the screening procedure, counselling, and FIT screening difficulties or in need of a new FIT test. Comorbidity was the most frequent reason for unsubscribing and most of the counselling calls included questions about the FIT test or the colonoscopy. Conclusion: Most of the calls to the helpline seemed to be related to individuals' lack of understanding about the organization of the screening programme and the screening procedure. Therefore, we find it important to further stress the tailoring part in our DA developing process, that is, provide limited information initially, with the possibility of access to more, if desired by the individual, still with respect to the individual's needs, health and digital literacy. Patient and Public Contribution: Individuals representing the public and invited to SCREESCO participated since we analysed their calls to the helpline. The findings will contribute to our continued work with the DA where the public will contribute and participate. [ABSTRACT FROM AUTHOR]

Background: Involving service users in inpatient care and recovery planning has gained interest worldwide. Our purpose was to evaluate the process of implementation of a coproduced Recovery Guide (RG) intervention in 22 inpatient wards in Sweden, in terms of context, implementation process and mechanisms of impact over 12 months. Methods: A mixed method design and a process evaluation framework were used to guide data collection and to deductively analyze perspectives and descriptive statistics of delivery from three stakeholder groups. Results: Results showed that although initial contextual barriers were present (e.g., lack of resources, and interest, uncertainty in the organization, a dominant illness perspective), it was possible to implement the RG in 14 wards, where 53% of admitted service users received the intervention. Legitimacy of the intervention, engaged managers and staff, capacity of staff and ward organization, coproduction and continuous support from user organization were critical mediators. Mechanisms of impact concerned (1) a new perspective on mental health, well‐being and recovery, (2) capacity building of a recovery approach in inpatient settings and (3) a meaningful outlet for users' thoughts and feelings on recovery, sharing narratives and influencing care and goals. Conclusions: The RG intervention has the potential to promote a recovery approach in inpatient mental health services (MHSs). Coproduction among stakeholders created trust and a sustainable implementation that made it possible for wards to resume implementation when contextual barriers had been resolved. Patient and Public Contribution: The current study involved stakeholders including a service user organization, the public, first‐line managers and staff (including peer support workers) in inpatient and community MHS and researchers, who greatly contributed to the implementation programme, including codesign of the RG intervention as well as coproduction of the implementation in inpatient MHS. All authors have their own lived experiences of mental health problems as a service user or as a relative. [ABSTRACT FROM AUTHOR]

Background: Cancer care trajectories are often complex, with potent multimodality treatments and multiple interactions with health care providers. Communication and coordination are challenging and the patients' responsibilities to take on more active roles in their own care are increasing. Objective: This study aimed to investigate associations between patient activation level and participation in cancer care, sociodemographic characteristics, clinical data, health‐related quality of life (HRQoL) and helpfulness of received information. Methods: In this cross‐sectional population‐based study, patients completed questionnaires on patient activation, perceived participation, HRQoL, helpfulness of received information and sociodemographic characteristics. Responses to the patient activation measures (PAMs) were classified into four levels (higher levels indicating more activation). Data on age, sex and cancer diagnosis were collected from the Swedish Cancer Register. Results: Data from 682 patients were analysed. On comparing patients at PAM levels 1 and 4, the latter reported significantly higher possibilities to influence care decisions (46.6% vs. 20.8%) and to ask questions regarding treatment and care (93.4% vs. 68.4%). Patients at PAM level 4 reported wanting to influence decision‐making to a higher extent, compared with patients at other PAM levels, and reported clinically significantly higher HRQoL. No significant differences were found regarding sociodemographic characteristics. Conclusion: We found strong associations between perceived patient participation and activation levels, with limited possibility for participation among those with lower activation levels. Patient or Public Contribution: Discussions with patient representatives have raised the importance of participation. The preliminary findings were presented and discussed in a workshop with representatives from 21 cancer patient advocacy groups. [ABSTRACT FROM AUTHOR]

Background: While increasingly discussed in somatic care, the concept of patient participation remains unsettled in psychiatric care, potentially impeding person‐centred experiences. Objective: To describe outpatient psychiatric care patients' conceptualization of patient participation. Design: An exploratory survey. Setting and participants: Patients in four psychiatric outpatient care units. Variables: Patients conceptualized patient participation by completing a semi‐structured questionnaire, including optional attributes and free text. Data were analysed using statistics for ordinal data and content analysis for free text. Results: In total, 137 patients (69% of potential respondents) completed the questionnaire. The discrete items were favoured for conceptualizing patient participation, indicating a primary connotation that participation means being listened to, being in a reciprocal dialogue, learning about one's health care and managing one's symptoms. Additional free‐text responses acknowledged the attributes previously recognized, and provided supplementary notions, including that patient participation is about mutual respect and shared trust. Discussion: What patient participation is and how it can be facilitated needs to be agreed in order to enable preference‐based patient participation. Patients in outpatient psychiatric care conceptualize participation in terms of both sharing of and sharing in, including taking part in joint and solo activities, such as a reciprocal dialogue and managing symptoms by yourself. Conclusion: While being a patient in psychiatric care has been associated with a lack of voice, an increased understanding of patient participation enables person‐centred care, with the benefits of collaboration, co‐production and enhanced quality of care. Patient contribution: Patients provided their conceptualization of patient participation in accordance with their lived experience. [ABSTRACT FROM AUTHOR]

Background: Person‐centred care implies a change in interaction between care professionals and patients where patients are not passive recipients but co‐producers of care. The interactional practices of person‐centred care remain largely unexplored. Objective: This study focuses on the analysis of disagreements, which are described as an important part in the co‐production of knowledge in interaction. Design: A qualitative exploratory study using conversation analysis. Setting and participants: Data were collected from a nurse‐led person‐centred intervention in a hospital outpatient setting. Interactions between adult patients with irritable bowel syndrome (n = 17) and a registered nurse were audio‐recorded. COREQ guidelines were applied. Results: Disagreements were found after demonstration of the nurse's or patients' respective professional or personal knowledge. Disagreements were also evident when deciding on strategies for self‐management. Although negotiations between opposing views of the nurse and patient were seen as important, the patient generally claimed final authority both in knowing how IBS is perceived and in the right to choose self‐management strategies. The nurse generally oriented towards patient authority, but instances of demonstration of nurse authority despite patient resistance were also found. Discussion and conclusions: This study provides information on how co‐production of knowledge and decisions occur in the context of a person‐centred care intervention. Negotiations between nurse and patient views require a flexible approach to communication, adapting interaction to each context while bearing in mind the patients having the final authority. To facilitate co‐production, the patient's role and responsibilities in interaction should be explicitly stated. [ABSTRACT FROM AUTHOR]