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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: Many people with mental health issues recover and re‐establish their identity and find hope and meaning in life, irrespective of symptom burden. Recovery can be supported through learning and education, aiming at strengthening self‐management and coping skills. Such education offered by peers with lived experience is rare and scarcely reported. The aim was to assess the perceived value of an educational intervention, called the Patient School (PS), organized within a psychiatry organization by employed patient peers with lived experience. Methods: A qualitative case study based on interviews with people with mental health issues (n = 8), peer‐organizers (n = 4) and healthcare professionals (n = 4), and documents such as schedules and educational materials were used. First, the interviews were transcribed and analyzed using inductive conventional content analysis. Second, the findings were synthesized into a programme theory, illustrated in a logic model. Results: The perceived value of the PS was related to the willingness of peer‐organizers to share their own experiences, a sense of belonging, sharing with like‐minded and new knowledge, practical skills, roles and attitudes acquired. These experiences were empowering, decreased stigma and reassured user participants that one's identity is not defined by mental health issues. This increased self‐confidence paves the way for increased self‐management and creates a potential for a more efficient use of healthcare services. Conclusion: We conclude that this PS, organized within a psychiatry organization by salaried peers, achieved the same positive results as those reported in the literature and showed the value of having peer‐organizers being part of the staff. Patient or Public Contribution: This research was performed in a partnership between academic researchers and persons with user experience of psychiatric services, engaged in the educational intervention in the focus of the study. The research plan was co‐designed, and the analysis of the data collected was performed in collaboration. The participation of the co‐researchers with user experience gave the project team access to the study site, provided the team with insights into to study context and contributed with an understanding promoting the interpretation of the findings. [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: There is no national, validated, generic patient‐reported experience measure (PREM) for children under 15 years of age in Sweden. A recent cross‐sectional study found no consensus in how children's voices are heard in paediatric health care, as well as a lack of validated questionnaires. Aim: The aim of this study is to translate, adapt and validate the six versions of the Children's and Young People's PREM for use in a Swedish health care context. Design: An exploratory sequential mixed‐method design including cognitive interviews and content validity index (CVI) was used. The interviews focused on evaluating children's understanding of the questionnaire, and the CVI was used to further adjust the relevance of the questionnaire. Participants: A convenience sample of 62 children participated in the cognitive interviews and an additional convenience sample of 42 children was included in the CVI testing. The children, aged 8–16 years, were attending routine visits at paediatric departments in a county hospital and a children's hospital in the mid‐Sweden region between October 2020 and June 2022. Results: The translation, adaptation and validation process identified several issues regarding the understanding of the questionnaire in a Swedish context. Adaptations were made based on issues related to context, wording and the structure of the questions. CVI testing resulted in the removal of 3–10 questions in each of the different versions of the questionnaire. Conclusion: The study has resulted in six face‐ and content‐validated Swedish versions of the questionnaire ready for pilot testing. Although the versions of the original questionnaire were developed in collaboration with children in the United Kingdom, this did not mean that they could automatically be used in a Swedish health care context. This study confirms the importance of a rigorous process of adaptation and validation to ensure quality and applicability to children accessing health care in different countries. Patient or Public Contribution: Children's views have guided the development of the original instrument and its adaptation to the Swedish health care context. Due to the strong patient involvement in the process of developing the Swedish versions of the questionnaire, the research group made a pragmatic decision to have no other patient contribution in the study. [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: In January 2020, the United Nations Convention on the Rights of the Child was incorporated into Swedish law. According to Swedish regulations, patients are to be given the opportunity to participate in quality improvement. Sometimes, the patients are children who have the right to be heard on matters concerning them, such as their experience of a hospital visit. Objective: This study aimed to describe how Swedish paediatric departments facilitate children's voices on their healthcare experiences and how their perspectives are taken into account in quality improvement work. Methods: This study has a descriptive cross‐sectional design. Data were collected using a study‐specific survey sent by e‐mail to all the heads of the paediatric departments in Sweden, with both inpatient and outpatient care. The response rate was 74% (28 of 38 departments). Results: The results demonstrated a variation in questionnaires used and to whom they were targeted; less than half of the participating departments reported having had questionnaires aimed at children. The results also indicated a major variation in other working methods used to allow children to voice their experiences in Swedish paediatric departments. The results indicate that the national co‐ordination in facilitating the children's rights to be heard on their experiences in healthcare organisations can be improved. Conclusion: Further research is required to ascertain which method is the most practically effective in paediatric departments, in what way children prefer to be heard regarding their experience of and perspectives on healthcare, and what questions need to be asked. A validated national patient‐reported experience measure developed with and aimed at children could provide them with equal opportunities to voice their experiences in healthcare, regardless of their diagnoses or which paediatric department they visit. [ABSTRACT FROM AUTHOR]

Background: Patient participation is associated with satisfaction and improved health‐related outcomes. In gastrointestinal endoscopy, patient participation is an underexplored area. Objective: To gain understanding on patients' experiences, attitudes and preferences concerning patient participation in the endoscopy pathway. Methods: Semi‐structured interviews with endoscopy patients (n = 17, female n = 8, male n = 9, ages 19‐80 years) were performed. Interview transcripts were analysed using qualitative content analysis. Participants were recruited by purposive sampling from an endoscopy unit in a Swedish university hospital. Inclusion:≥ 18 years, fluency in Swedish and recent experience of endoscopy at the unit. Results: Five generic categories emerged, two within the area of the patient's role, which was described as active or passive/included or excluded. Another three generic categories related to factors, critical to active participation, including organizational aspects, impressions of staff and individual circumstances were identified. In this context, patient participation described in the interviews was on a low to basic level, although sometimes reaching a higher level when staff 'invited' patients in decision making. Discussion: This study contributes to the understanding of patient participation in endoscopy. Patients are in an inferior position and need support from the staff for an active role in their care. Although there were variations on the perceived importance of different factors, a heavy responsibility lies on the endoscopy staff to acknowledge the patients' individual needs and to facilitate patient participation. Conclusions: Endoscopy staff has a key role in supporting patient participation. In endoscopy settings, patient participation is vulnerable to multiple factors. [ABSTRACT FROM AUTHOR]

Background: This study focuses on patient complaints from a human rights perspective. Despite the UN Convention on Human Rights being widely recognized, it has not previously been examined in relation to patients' complaints on health care. A human rights perspective and the right to the highest attainable standard of health are a major sustainability challenge in health care today. Previous research points to patients' complaints as a growing concern for health‐care organizations, and the handling of this concern can lead to improvement in health‐care services. Objective: The aim was to analyse patients' complaints on health‐care services and to examine expressed needs for health care from a human rights perspective. Methods: In this descriptive study, a random sample of 170 patient complaints about Swedish health‐care services were qualitatively analysed from a human rights perspective. Results: The complaints are described in three themes: the right to available and accessible health‐care services, the right to good quality health‐care services and the right to dignity and equality in health care. Questions of availability, accessibility, acceptability and quality are highlighted by patients and/or relatives making complaints on health‐care services. Discussion and Conclusion: This study emphasizes the human right to health in relation to patient complaints. Findings indicate that this right has been breached in relation to availability, accessibility, acceptability and quality in health‐care services. Further debate, education and investigations are necessary to ensure that patients' rights to health and health care not be taken for granted. [ABSTRACT FROM AUTHOR]

The article presents a study which focuses on the development and initial assessment of The Patient Preferences for Patient Participation (4Ps) tool. The study uses the Swedish researcher experts (REs) and patient experts (PEs) for the evaluation of the 4Ps tools. Results show the opportunities provided the 4Ps tool for patients in the depiction of participation.

Background The publicly financed health service in Sweden has come under increasing pressure, forcing policy makers to consider restrictions. Objective To describe different perceptions of rationing, in particular, what citizens themselves believe influences their acceptance of having to stand aside for others in a public health service. Design Qualitative interviews, analysed by phenomenography, describing perceptions by different categories. Setting and participants Purposeful sample of 14 Swedish citizens, based on demographic criteria and attitudes towards allocation in health care. Results Participants expressed high awareness of limitations in public resources and the necessity of rationing. Acceptance of rationing could increase or decrease, depending on one's (i) awareness that healthcare resources are limited, (ii) endorsement of universal health care, (iii) knowledge and acceptance of the principles guiding rationing and (iv) knowledge about alternatives to public health services. Conclusions This study suggests that decision makers should be more explicit in describing the dilemma of resource limitations in a publicly funded healthcare system. Openness enables citizens to gain the insight to make informed decisions, i.e. to use public services or to 'opt out' of the public sector solution if they consider rationing decisions unacceptable. [ABSTRACT FROM AUTHOR]