RESUMEN

BACKGROUND: It has been advocated that the development of medical school curricula must be informed by students, doctors in training, educators, employers, other health and social care professionals and patients, families and carers. Patients are widely employed to teach clinical and interpersonal skills, and while recognised as crucial in health education, they have mostly been offered a passive role. We assessed the impact of patients contributing personal illness narratives in the master curriculum of allied health care professionals on students' learning experiences. METHODS: We designed a module (Patient and Society) for a master's degree programme in Health Sciences at the University of Southern Denmark in collaboration with six patients. The patients contributed to the teaching by sharing and discussing their personal illness narrative. At the end of the module, as part of the exam, we asked the students to reflect on the patients' contribution to the module and how this affected their learning experiences. The 500-word exam responses of 29 students were analysed, in collaboration with six patients, using thematic analysis. RESULTS: Including patients' illness narratives lifted students' academic learning, and their personal and professional development. The stories brought theoretical concepts to life; it helped the students to obtain, retain, and apply academic knowledge. Actively and uninterrupted listening to patients' illness experiences promoted empathy and critical reflection on clinical practice. Faced with the impact of a disease on a person's life, seeing the healthcare system through a patient's lens made students reflect critically on the medical positivist model ruling the health care system focused on just fixing the medical problem with very little room for the illness experience. CONCLUSION: Our analyses support previous findings indicating that patient narratives are a powerful tool to achieve academic and professional development. Working with patients in health education has the potential to work towards a more inclusive epistemological stance in the health care system and health research.

Asunto(s)

RESUMEN

BACKGROUND: Guidance on co-production between researchers and people with lived experience was published in 2018 by the National Institute for Health and Care Research (NIHR) advisory group, previously known as INVOLVE. This guidance described sharing power as a key principle within co-production. Authentic sharing of power within co-produced mental health research does not always occur however and remains a challenge to achieve within many projects. OBJECTIVES: To explore what has been learned about the sharing of power in co-production within mental health research since the publication of these guidelines, by synthesising qualitative literature relating to power within co-produced mental health research. METHODS: We carried out a systematic review with thematic synthesis. We searched CINHAL, Embase and PubMed databases to identify qualitative or mixed-method studies relating to power within co-produced mental health research. Studies were independently screened by two reviewers for inclusion and appraised using the Critical Appraisal Skills Programme tool (CASP) for qualitative research. RESULTS: We identified nine papers that met the criteria for inclusion and were included in the synthesis. Three themes were generated: (1) Battling to share power against a more powerful system, (2) Empowerment through relationships and (3) The journey is turbulent, but it is not supposed to be smooth. CONCLUSIONS: Results highlight that power is pervasive, especially within the hierarchical systems research is often conducted within. Sharing power within co-produced mental health research is an ongoing complex process that is not intended to be easy. Respectful trusting relationships can help facilitate power sharing. However, ultimately meaningful change needs to come from research funders, universities and NHS providers. PATIENT OR PUBLIC CONTRIBUTION: The study authors include a lived experience researcher who contributed to the review design, analysis and write-up.

Asunto(s)

RESUMEN

Europe's ageing population increases the demand for housing solutions targeting older citizens' needs and preferences. Establishing age-friendly communities fostering social participation is essential for healthy ageing and various housing options with shared facilities prioritizing social contact have emerged. While involving older people in public service delivery is emphasized, studies on co-production with older people in building age-friendly communities remain limited. This study explores a co-production initiative between older citizens, a municipality and a real estate company in a newly established senior village focusing on organizational settings and physical facilities. A qualitative study inspired by the BIKVA methodology was conducted using focus group interviews with citizens, frontline staff, and management. Through reflexive thematic analysis, the physical environment, organizational setting and other factors influencing the co-production process were analysed. Citizens expressed satisfaction with the unique physical environment, the different activities and being involved in the co-production process on development and building up the senior village. However, the co-production initiative was influenced by the lack of frontline staff involvement, how the physical facilities were organized for building inclusive communities as well as the level of information provided to align expectations among stakeholders. Involving older citizens in the co-production of age-friendly community initiatives has the potential to take the identified challenges into account. To understand what constitutes an optimal environment for healthy ageing further research in collaboration with older citizens is needed.

Asunto(s)

RESUMEN

Social contact refers to the facilitation of connection and interactions between people with and without mental health conditions. It can be achieved, for example, through people sharing their lived experience of mental health conditions, which is an effective strategy for stigma reduction. Meaningful involvement of people with lived experience (PWLE) in leading and co-leading anti-stigma interventions can/may promote autonomy and resilience. Our paper aimed to explore how PWLE have been involved in research and anti-stigma interventions to improve effective means of involving PWLE in stigma reduction activities in LMICs. A qualitative collective case study design was adopted. Case studies from four LMICs (China, Ethiopia, India and Nepal) are summarized, briefly reflecting on the background of the work, alongside anticipated and experienced challenges, strategies to overcome these, and recommendations for future work. We found that the involvement of PWLEs in stigma reduction is commonly a new concept in LMIC. Experienced and anticipated challenges were similar, such as identifying suitable persons to engage in the work and sustaining their involvement. Such an approach can be difficult because PWLE might be apprehensive about the negative consequences of disclosure. In many case studies, we found that long-standing professional connectedness, continued encouragement, information sharing, debriefing and support helped the participants' involvement. We recommend that confidentiality of the individual, cultural norms and family concerns be prioritized and respected during the implementation. Taking into account socio-cultural contextual factors, it is possible to directly involve PWLEs in social contact-based anti-stigma interventions.

RESUMEN

Background: Local authorities need to find new ways of collecting and using data on social care users' experiences to improve service design and quality. Here we draw on and adapt an approach used in the healthcare improvement field, accelerated experience-based co-design, to see if it can be translated to social care. We use loneliness support as our exemplar. Objectives: To understand how loneliness is understood and experienced by members of the public and characterised by social care and voluntary sector staff; to identify service improvements around loneliness support; to explore whether accelerated experience-based co-design is effective in social care; and to produce new resources for publication on Socialcaretalk.org. Design and methods: Discovery phase: in-depth interviews with a diverse sample of people in terms of demographic characteristics with experience of loneliness, and 20 social care and voluntary staff who provided loneliness support. Production of a catalyst film from the public interview data set. Co-design phase: exploring whether the accelerated experience-based co-design approach is effective in one local authority area via a series of three workshops to agree shared priorities for improving loneliness support (one workshop for staff, another for people with experience of local loneliness support, and a third, joint workshop), followed by 7-monthly meetings by two co-design groups to work on priority improvements. A process evaluation of the co-design phase was conducted using interviews, ethnographic observation, questionnaires and other written material. Results: Accelerated experience-based co-design demonstrated strong potential for use in social care. Diverse experiences of participants and fuzzy boundaries around social care compared to health care widened the scope of what could be considered a service improvement priority. Co-design groups focused on supporting people to return to pre-pandemic activities and developing a vulnerable passenger 'gold standard' award for taxi drivers. This work generated short-term 'wins' and longer-term legacies. Participants felt empowered by the process and prospect of change, and local lead organisations committed to take the work forward. Conclusions: Using an exemplar, loneliness support, that does not correspond to a single pathway allowed us to comprehensively explore the use of accelerated experience-based co-design, and we found it can be adapted for use in social care. We produced recommendations for the future use of the approach in social care which include identifying people or organisations who could have responsibility for implementing improvements, and allowing time for coalition-building, developing trusted relationships and understanding different perspectives. Limitations: COVID-19 temporarily affected the capacity of the local authority Project Lead to set up the intervention. Pandemic work pressures led to smaller numbers of participating staff and had a knock-on effect on recruitment. Staff turnover within Doncaster Council created further challenges. Future work: Exploring the approach using a single pathway, such as assessing eligibility for care and support, could add additional insights into its transferability to social care. Trial registration: This trial is registered as Current Controlled Trials ISRCTN98646409. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128616) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 27. See the NIHR Funding and Awards website for further award information.

Local councils need to find new ways of using people's experiences of social care to improve services. We explored whether a way of improving health services can improve social care services. 'Experience-based co-design' is a complicated name. It means working with people who use health or social care services to improve that service, and interviewing people as part of this process. Accelerated experience-based co-design uses existing interviews instead of new interviews. To see if the approach works in social care, we chose the topic of loneliness because many of us experience loneliness. We worked with Doncaster City Council because it has been focusing on loneliness. We interviewed 37 people across England and recorded what they said about loneliness. We made a film about their experiences that showed examples of good or poor care. We call these touch points. We held three workshops in Doncaster. Workshop 1 was with people who work in social care as paid workers or volunteers, and workshop 2 was with people who use social care services. In both workshops, people made a list of types of support that needed improvement. Both groups attended workshop 3, watched the film and decided what to focus on from the two lists. Two groups were set up to work on improving support for loneliness in Doncaster. Each group met seven times. One focused on taxi services, and the other group focused on supporting people to do activities they did before the pandemic. A researcher attended these meetings and talked with everyone involved to see how this approach worked. At the end, there was a celebration event. We found that loneliness is complicated. We found the approach to improving support does work in social care, but it needs some changes because social care is not like health care. We suggest ways the approach can be done differently.

Asunto(s)

RESUMEN

BACKGROUND: When creating resources, such as psychoeducational materials, for children and families, it is essential to consult all stakeholders. By asking service users what they would find helpful, we can ensure that psychoeducational materials developed are directly addressing a need. This report summarises the process of co-developing a psychoeducational video with young people for the adults in their lives. METHODS AND RESULTS: The idea for a psychoeducational video originated from discussions within a Youth Advisory Group in a South London Child and Adolescent Mental Health Service. The group shared that they wanted a way of letting the adults in their lives know what is and is not helpful to hear when they are experiencing mental health distress. A workshop was held with young people to gather ideas for the content and style of a psychoeducational video resource. Through co-design methods, themes were identified including prioritising the young person's lived experience, the importance of listening, respecting and validating, adults not making assumptions about a diagnosis, and actively involving young people in care planning. A script and accompanying video were produced over several co-design sessions and shared via multiple online mass communication channels. CONCLUSIONS: This project was co-produced at all stages by young people with lived experience of mental health difficulties to develop a digital resource that they considered necessary and meaningful. Centring the voices of young people when producing materials concerning their mental health results in valuable resources and can bring autonomy to those involved.

RESUMEN

Improving our ability to monitor fragmented tropical ecosystems is a critical step in supporting the stewardship of these complex landscapes. We investigated the structural characteristics of vegetation classes in Ucayali, Peru, employing a co-production approach. The vegetation classes included three agricultural classes (mature oil palm, monocrop cacao, and agroforestry cacao plantations) and three forest regeneration classes (mature lowland forest, secondary lowland forest, and young lowland vegetation regrowth). We combined local knowledge with spaceborne lidar from NASA's Global Ecosystem Dynamics Investigation mission to classify vegetation and characterize the horizontal and vertical structure of each vegetation class. Mature lowland forest had consistently higher mean canopy height and lower canopy height variance than secondary lowland forest (µ = 29.40 m, sd = 6.89 m vs. µ = 20.82 m, sd = 9.15 m, respectively). The lower variance of mature forest could be attributed to the range of forest development ages in the secondary forest patches. However, secondary forests exhibited a similar vertical profile to mature forests, with each cumulative energy percentile increasing at similar rates. We also observed similar mean and standard deviations in relative height ratios (RH50/RH95) for mature forest, secondary forest, and oil palm even when removing the negative values from the relative height ratios and interpolating from above-ground returns only (mean RH50/RH95 of 0.58, 0.54, and 0.53 for mature forest, secondary forest, and oil palm, respectively) (p < .0001). This pattern differed from our original expectations based on local knowledge and existing tropical forest succession studies, pointing to opportunities for future work. Our findings suggest that lidar-based relative height metrics can complement local information and other remote sensing approaches that rely on optical imagery, which are limited by extensive cloud cover in the tropics. We show that characterizing ecosystem structure with a co-production approach can support addressing both the technical and social challenges of monitoring and managing fragmented tropical landscapes.

RESUMEN

Bacillus velezensis can produce various secondary metabolites, such as the antibacterial compound iturin A and the coagulation-promoting menaquinone-7 (MK-7). To enhance the economic feasibility of the fermentation process, a co-production strategy, involving the simultaneous production of MK-7 and iturin A by Bacillus velezensis ND, was investigated in this study. Firstly, the effects of cultivation temperature and initial pH on the synthesis of MK-7 and iturin A were investigated. Considering the co-production of iturin A and MK-7, the optimal temperature and pH were determined as 32 °C and 7, respectively. Subsequently, important nutrients for the co-production process were investigated. It was observed that glycerol, soybean meal, yeast extract, and L-glutamate had a significant effect on the co-produce process. An optimal medium composed of glycerol (72.19 mL L-1), L-glutamate (1.4 g L-1), yeast extract (16.88 g L-1), and soybean meal (130.95 g L-1) was obtained by response surface methodology (RSM). This co-produce process was further scaled up in a biofilm reactor, and the maximum concentration of MK-7 and iturin A reached 46.88 mg L-1 and 5.58 g L-1, respectively. Finally, we established an effective method for separately extracting the two metabolites from the fermentation broth. The superiority of this co-production fermentation strategy demonstrates its significant potential for industrial production.

RESUMEN

Parent members of the Pediatric Rheumatology Care & Outcomes Improvement Network are an integral part of the Learning Health Network's work. Since early in the creation of the network, they have been a part of every Quality Improvement project, committee, and work group and have a role in governance on the Executive and Steering Committees. Members of the Parent Working Group (PWG) have played a role in developing QI measures used in the clinical setting as well as initiatives and projects like the guiding work of Treat-to-Target. The PWG also creates self-management supports, including toolkits for families and patients at all stages of life. This article will discuss how integrating parents as partners in a pediatric Learning Health Network is critical for the quality of care received by children with chronic illnesses and to improving outcomes.

RESUMEN

Background: In 1996, a multicomponent community-based alcohol prevention program in Responsible Beverage Service (RBS) targeting licensed premises was developed by STAD (Stockholm Prevents Alcohol and Drug Problems) and implemented in Stockholm, Sweden. The program consists of community mobilization and collaboration, training, and enforcement. Early evaluations have shown a significant increase in the refusal rates of alcohol service to intoxicated patrons, from 5% in 1996 to 70% in 2001, and a 29% decrease in the frequency of police-reported violence. A cost-effectiveness analysis showed a cost-saving ratio of 1:39. The program was institutionalized by a collaborative steering group consisting of community stakeholders. This study aimed to evaluate the long-term effects over 20 years of the RBS program. The indicator chosen was the rate of alcohol overserving to obviously intoxicated patrons at licensed premises in Stockholm. Methods: A 20-year follow-up study was conducted using the same procedure as the baseline and previous follow-ups. Professional male actors (pseudopatrons) were trained by an expert panel to enact a standardized scene of obvious alcohol-intoxication. In 2016, 146 licensed premises located in the central part of Stockholm were randomly selected and visited. A review of program implementation from its initiation 1996 was conducted, examining critical events, including commitment from key actors in the community, training of bar staff, and enforcement. Results: At the 20-year follow-up, pseudopatrons were refused alcohol service in 76.7% of the attempts, which was at the same level (70%) as in the follow-up in 2001, thus indicating sustained effects of the RBS program. Compared with previous follow-ups, serving staff used more active intervention techniques in 2016 toward intoxicated patrons, such as refusing to take the order (56.9% in 2016 vs. 42.0% in 2001), and fewer passive techniques, such as ignoring patrons (6.5% in 2016 vs. 15.5% in 1999) or contacting a colleague (4.1% in 2016 vs. 25% in 2001). Conclusion: The sustained long-term effects of the RBS program are unique and can be explained by the high level of institutionalization of the multicomponent program, which is still ongoing in Stockholm. These findings can inform the dissemination of the program to other countries and settings.

Asunto(s)

RESUMEN

Australia is a multicultural nation with nearly 30% of the population born overseas. Migrants' mental health can be impacted by discrimination, racism and experiences relating to asylum and immigration. These can be compounded by low help-seeking caused by stigmatized beliefs and poor mental health literacy. My Mind, My Voice (MMMV) is a co-designed program aiming to promote awareness of mental health and wellbeing for people with a culturally and linguistically diverse (CALD) background. This research project explored the perceived impacts and value of MMMV and processes leading to those impacts. A mixture of internal quantitative and qualitative evaluation surveys (n = 32) and researcher-conducted semi-structured interviews (n = 9) were conducted with CALD organization and community members who attended training workshops, presented MMMV events or attended an event. Data were analysed using a reflexive thematic analysis approach. Five themes were developed: culturally relevant and respectful, cross-cultural connections, the importance of language, increasing confidence and literacy and the potential to change attitudes. Being involved with a co-produced program that was culturally relevant and respectful was a positive experience that enhanced people's confidence and literacy. Feeling respected, valued and validated helped participants feel empowered to develop and deliver mental health and wellbeing education in their community. Open, honest conversations are an important way to break down stigma and start conversations about mental health and wellbeing in CALD communities. Evaluation outcomes demonstrate the success of MMMV's collaborative approach, which can inform the development and evaluation of CALD mental health promotion interventions.

Asunto(s)

RESUMEN

For many disabled people, violence can become an unwanted, yet ordinary part of everyday life. Often, these crimes are attributed to understandings of disabled people as vulnerable and largely, passive victims. Attending to the aims of this special issue, this paper aims to dismantle these stereotypes and attend to the unique ways that disabled people can resist and respond to hate crime through creative and collaborative research practices. Building upon this, I argue that there is a pressing need for hate studies researchers to work "with" and not "on" those who have experienced targeted violence. Working in this way builds upon long-standing efforts of disabled activists and disabilities studies researchers to challenge reductive research practices by working in more collective and inclusive ways. To demonstrate this, I reflect upon a project working in partnership with disabled people to create a disability hate crime toolkit. The toolkit, now published, shares accessible and informative resources that can be used to raise awareness about disability hate crime. While the focus of this paper is disability, I consider methods of collaboration, co-production and participation that can be drawn upon by researchers to respond to hate crime and interpersonal violence more broadly.

Asunto(s)

RESUMEN

Hydrogen-ethanol co-production can significantly improve the energy conversion efficiency of corn stalk (CS). In this study, with CS as the raw material, the co-production characteristics of one-step and two-step photo-fermentation hydrogen production (PFHP) and ethanol production were investigated. In addition, the gas and liquid characteristics of the experiment were analyzed. The kinetics of hydrogen-ethanol co-production was calculated, and the economics of hydrogen and ethanol were analyzed. Results of the experiments indicated that the two-step hydrogen-ethanol co-production had the best hydrogen production performance when the concentration of CS was 25 g/L. The total hydrogen production was 350.08 mL, and the hydrogen yield was 70.02 mL/g, which was 2.45 times higher than that of the one-step method. The efficiency of hydrogen-ethanol co-production was 17.79 %, which was 2.76 times more efficient than hydrogen compared to fermentation with hydrogen. The result provides technical reference for the high-quality utilization of CS.

Asunto(s)

RESUMEN

OBJECTIVE: There is a growing emphasis on healthcare professionals' (HCPs) role in managing cardiometabolic risk factors to reduce health disparity for immigrants in developed countries. This scoping review aimed to analyse evidence about HCPs' knowledge, attitudes, and practices (KAP) of managing cardiometabolic risk factors among Southeast Asian (SEA) immigrants in developed countries. DESIGN: Primary studies from inception to July 17, 2023, from four databases: PubMed/Medline, Embase, PsycINFO, and CINAHL were included. This review followed the Joanna Briggs Institute (JBI) scoping review methodology and reported in line with PRISMA-ScR. RESULTS: Of 619 identified studies, seven met the inclusion criteria. All studies discussed HCPs' knowledge, six explored attitudes, and three described practices specific to SEA immigrants. The extracted data were analysed using descriptive qualitative content analysis and classified into barriers and facilitators. Barriers included cultural discordance and acculturation challenges (patient level); gaps in cultural understanding, communication and clinical skills (healthcare team level); limited immigrant-specific resources (organisation level); and funding constraints (environment level). Facilitators included community and provider support (patient level), awareness and desires to provide immigrant-specific care (healthcare team level), availability of culturally appropriate services (organisation level), and multicultural agendas and policies (environment level). CONCLUSION: The barriers and facilitators faced by HCPs caring for SEA immigrants with cardiometabolic syndromes share similarities with other immigrant groups. Future research focused on co-production involving immigrant patients, their communities, and HCPs in healthcare service design is required to support HCPs in providing culturally appropriate care and promoting health equity regardless of ethnic, cultural, or linguistic backgrounds.

RESUMEN

BACKGROUND: Research on the co-production of multiple enzymes by Bacillus velezensis as a novel species is still a topic that needs to be studied. This study aimed to investigate the fermentation characteristics of B. velezensis D6 co-producing α-amylase and protease and to explore their enzymatic properties and applications in fermentation. RESULTS: The maximum co-production of α-amylase and protease reached 13.13 ± 0.72 and 2106.63 ± 64.42 U mL-1, respectively, under the optimal fermented conditions (nutrients: 20.0 g L-1 urea, 20.0 g L-1 glucose, 0.7 g L-1 MnCl2; incubation conditions: initial pH 7.0, temperature 41 °C, 8% inoculation size and 30% working volume). Moreover, the genetic co-expression of α-amylase and protease increased from 0 to 24 h and then decreased after 36 h at the transcriptional level, which coincided with the growth trend of B. velezensis D6. The optimal reaction temperature of α-amylase was 55-60 °C, while that of protease was 35-40 °C. The activities of α-amylase and protease were retained by over 80% after thermal treatment (90 °C, 1 h), which indicated that two enzymes co-produced by B. velezensis D6 demonstrated excellent thermal stability. Moreover, the two enzymes were stable over a wide pH range (pH 4.0-8.0 for α-amylase; pH 4.0-9.0 for protease). Finally, the degrees of hydrolysis of corn, rice, sorghum and soybeans by α-amylase from B. velezensis D6 reached 44.95 ± 2.95%, 57.16 ± 2.75%, 52.53 ± 4.01% and 20.53 ± 2.42%, respectively, suggesting an excellent hydrolysis effect on starchy raw materials. The hydrolysis degrees of mackerel heads and soybeans by protease were 43.93 ± 2.19% and 26.38 ± 1.72%, respectively, which suggested that the protease from B. velezensis D6 preferentially hydrolyzed animal-based protein. CONCLUSION: This is a systematic study on the co-production of α-amylase and protease by B. velezensis D6, which is crucial in widening the understanding of this species co-producing multi-enzymes and in exploring its potential application. © 2024 Society of Chemical Industry.

RESUMEN

BACKGROUND: Recent reviews have highlighted the need for participatory research to design and evaluate inclusive, community-based interventions that address the diverse needs of people with lived experience of psychosis, within and beyond the health sector. The SUCCEED Africa consortium aims to co-produce a 6-year programme of research across four countries in West (Sierra Leone, Nigeria) and Southeast Africa (Zimbabwe and Malawi). This protocol describes the pilot study in which SUCCEED's intervention, research tools and processes will be tested on a small scale in each country in preparation for future evaluation research. METHODS: The SUCCEED intervention comprises peer support, case management and livelihood activities for people with lived experience of psychosis. The pilot uses a before-and-after study design investigating change in subjective quality of life in adults diagnosed with a primary psychotic disorder or another mental disorder with psychotic symptoms who are offered the SUCCEED intervention over a 4-month period. Nested within this study are the following: a baseline assessment of the feasibility, acceptability and face validity of the selected measurement tool and validity of proxy versus self-completion; and a multi-method process evaluation examining key process indicators and implementation, service and client-level outcomes. Methods include the following: baseline cognitive interviews; semi-structed observation and routine monitoring and evaluation of service delivery; endline interviews and focus group discussions; and a comparison of provider competencies at endline. At each of the four pilot sites, participants will include the following: ten people with lived experience of psychosis, recruited from either health services or community settings using purposive sampling to maximise variation; up to ten adult family members (one per participant with lived experience) involved in their care; the peer support worker, community support worker and supervisor responsible for delivering the intervention; and the data collectors. Recruitment will take place in July and August 2023. DISCUSSION: To the best of our knowledge, this will be the first study of a community-based intervention incorporating lay-delivered case management, formal peer support and livelihoods activities for people with lived experience of psychosis in sub-Saharan Africa. Findings will be relevant not only to SUCCEED but also to others interested in promoting rights-based approaches to community mental health in low-resource settings. TRIAL REGISTRATION: US National Library of Medicine (ClinicalTrials.gov), Protocol reference ID 28346. Initially registered retrospectively July 20/2023: In review.

RESUMEN

Recent years have seen a dramatic growth in interest in the nature and extent of co-production in the health and social care sectors. Due to the proliferation of work on co-production, there is variation in practice in how co-production is defined, understood, and used in practice. We conducted a narrative review to explore, and provide an overview of, which models of health and social care co-production have been developed, applied, and critiqued over recent decades. Seventy-three peer-reviewed articles met our inclusion criteria. In this set of articles, we identified three broad types of models: conceptual/theoretical, practice-oriented, and presenting a typology. We found that practice-oriented models, predominantly from the Health Services Research and Quality Improvement literature, had largely not drawn on conceptual/theoretical models from the disciplinary fields of Public Administration & Management and Sociology. In particular, they have largely neglected theoretical perspectives on relationships and power and agency in co-production work. The concepts of Service-Dominant Logic and Public Service-Dominant Logic as ways to think about the joint, collaborative process of producing new value, particularly in the context of the use of a service, have also been neglected. Our review has identified distinct literatures which have contributed a variety of models of health and social care co-production. Our findings highlight under-explored dimensions of co-production that merit greater attention in the health and social care contexts. The overview of models of co-production we provide aims to offer a useful platform for the integration of different perspectives on co-production in future research and practice in health and social care.

Asunto(s)

RESUMEN

BACKGROUND: Research indicates that successful co-creation depends on a shared understanding of co-creation and its related concepts. However, it also shows that, in practice, views on co-creation and how to do it differ. This study aims to explore how patient innovators and researchers in a partnership research programme understand co-creation and how this understanding changes over time. METHODS: An explorative longitudinal qualitative study was conducted with the 'Patients in the Driver's Seat' partnership research programme. Fifty-eight interviews were performed and analysed using a reflexive thematic approach. FINDINGS: Four different ways of understanding co-creation were identified. These can be instrumentally conceptualized as themes using the inputs-process-outputs model: (1) combining different perspectives, experiences and backgrounds (inputs); (2) deliberately dynamic and exploratory (process); (3) striving for equity, not equality (process); and (4) diverse value creation, tangible and intangible (outputs). Together, these themes represent the varied understandings of co-creation among partnership programme members. CONCLUSIONS: Our study of patient innovators and researchers identified four distinct yet complementary understandings of co-creation. The study suggests that co-creation is the sum of its essential components, which can be divided into inputs, process, and outputs. PATIENT OR PUBLIC CONTRIBUTION: This study, and the partnership programme it explored, aims to improve the relevance of research for patients and informal caregivers through an improved understanding of the concept of co-creation within research on patient innovation. All patient innovators involved in the programme were invited, as interviewees and researchers, to contribute to the study design and data analysis.

Asunto(s)

RESUMEN

INTRODUCTION: Support staff within social care settings have expressed a need for resources to facilitate end-of-life care planning with people with intellectual disabilities. This study aimed to co-design a preliminary toolkit of end-of-life care planning approaches and resources that can be implemented in adult social care services for people with intellectual disabilities. METHODS: An adapted Experience-Based Co-Design process was applied to develop a toolkit for end-of-life care planning with people with intellectual disabilities. A co-design group (the 'All Together Group') met six times from January to October 2023. The group comprised nine people with intellectual disabilities (including four researchers with intellectual disabilities, who also co-facilitated the workshops), five family members, five intellectual disability support staff, two intellectual disability service managers, and five healthcare professionals. RESULTS: The All Together Group tested resources for and approaches to end-of-life care planning with people with intellectual disabilities, based on findings from a scoping review and a focus group study. Easy-read end-of-life care planning forms were deemed overwhelming and complicated, whilst visual and creative approaches were welcomed. Three new visual resources to support illness planning and funeral planning with people with intellectual disabilities were developed: (i) 'When I'm ill' thinking cards; (ii) 'Let's Talk About Funerals' conversation-starter pictures; and (iii) 'My funeral' planning cards. These three resources, alongside three positively evaluated existing resources, were included in a new toolkit for end-of-life care planning with people with intellectual disabilities. CONCLUSION: Through an iterative, flexible, inclusive, and comprehensive co-design process, a toolkit of three newly developed and three existing resources was created to facilitate support staff in doing end-of-life care planning with people with intellectual disabilities. Following a trialling process with support staff, the final toolkit was made freely available online. PATIENT OR PUBLIC CONTRIBUTION: The research team included four researchers with intellectual disabilities (A.C., D.J., L.J., and R.K.-B). Researchers with intellectual disability have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings.Intellectual disability service provider representatives (M.W., N.P., and S.S.) were part of the co-design group as well. Two of these representatives were also co-applicants in the overall project (N.P. and S.S.). The co-design group included people with intellectual disabilities, families, intellectual disability support staff and health and social care professionals. The study was supported by a Research Advisory Group comprising a variety of stakeholders, including people with intellectual disabilities families, intellectual disability researchers, representatives from intellectual disability organisations, and policymakers.

Asunto(s)

RESUMEN

OBJECTIVES: Women in the criminal justice system and women who have been subject to domestic abuse are at high risk of cancer but underrepresented in health promotion research. We aimed to co-produce, pilot and evaluate a health promoting programme delivered on group walks. DESIGN: A programme co-produced by women, based on motivational interviewing, created the opportunity for supportive conversations about cancer prevention. METHODS: Programme development in two workshops with women with lived experience using authentic vignettes to prompt help-seeking conversations. A small pilot and a qualitative evaluation was done using framework analysis. RESULTS: The programme appeared acceptable to women and the walk leaders. Women felt included and found it a safe space for sensitive conversations. They appeared empowered and more confident to seek help. Walk leaders expressed confidence in delivering this informal programme, which used prompts rather than delivering didactic training. CONCLUSION: Cancer prevention for high-risk groups can be delivered in a personalised and novel way by creating informal opportunities for supportive conversations about cancer prevention. Careful co-production of the programme of walks with women, using scenarios and quotes that were authentic vignettes, ensured that these came directly from the women's lived experience and enabled women to talk about change. Our findings indicate that this approach was practical, relevant and acceptable to them with some evidence of women feeling empowered to make informed decisions about their health. We recommend that future cancer prevention programmes for underrepresented groups take an asset-based approach by utilising pre-existing community organisations to increase reach and sustainability. PATIENT AND PUBLIC INVOLVEMENT: Women with lived experience co-designed and tested the programme. Provisional findings were fed back to the women and the women's organisation that partnered with this research.

Asunto(s)