Designing, Developing, and Testing a Chatbot for Parents and Caregivers of Children and Young People With Rheumatological Conditions (the IMPACT Study): Protocol for a Co-Designed Proof-of-Concept Study.

BACKGROUND: Pediatric rheumatology is a term that encompasses over 80 conditions affecting different organs and systems. Children and young people with rheumatological chronic conditions are known to have high levels of mental health problems and therefore are at risk of poor health outcomes. Clinical psychologists can help children and young people manage the daily difficulties of living with one of these conditions; however, there are insufficient pediatric psychologists in the United Kingdom. We urgently need to consider other ways of providing early, essential support to improve their current well-being. One way of doing this is to empower parents and caregivers to have more of the answers that their children and young people need to support them further between their hospital appointments. OBJECTIVE: The objective of this co-designed proof-of-concept study is to design, develop, and test a chatbot intervention to support parents and caregivers of children and young people with rheumatological conditions. METHODS: This study will explore the needs and views of children and young people with rheumatological conditions, their siblings, parents, and caregivers, as well as health care professionals working in pediatric rheumatology. We will ask approximately 100 participants in focus groups where they think the gaps are in current clinical care and what ideas they have for improving upon them. Creative experience-based co-design workshops will then decide upon top priorities to develop further while informing the appearance, functionality, and practical delivery of a chatbot intervention. Upon completion of a minimum viable product, approximately 100 parents and caregivers will user-test the chatbot intervention in an iterative sprint methodology to determine its worth as a mechanism for support for parents. RESULTS: A total of 73 children, young people, parents, caregivers, and health care professionals have so far been enrolled in the study, which began in November 2023. The anticipated completion date of the study is April 2026. The data analysis is expected to be completed in January 2026, with the results being published in April 2026. CONCLUSIONS: This study will provide evidence on the accessibility, acceptability, and usability of a chatbot intervention for parents and caregivers of children and young people with rheumatological conditions. If proven useful, it could lead to a future efficacy trial of one of the first chatbot interventions to provide targeted and user-suggested support for parents and caregivers of children with chronic health conditions in health care services. This study is unique in that it will detail the needs and wants of children, young people, siblings, parents, and caregivers to improve the current support given to families living with pediatric rheumatological conditions. It will be conducted across the whole of the United Kingdom for all pediatric rheumatological conditions at all stages of the disease trajectory. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/57238.

Barriers and facilitators to parent-delivered interventions for children with or infants at risk of cerebral palsy. An integrative review informed by behaviour change theory.

PURPOSE: Empowering parents to deliver evidenced-based interventions improves outcomes for children with or infants at risk of cerebral palsy (CP), by integrating repetition and contextual learning into daily routines. We aimed to identify the barriers and facilitators to parent-delivered interventions and suggest practice improvements guided by behaviour change models. METHODS: Eight electronic databases were searched to identify studies presenting parent and therapist perspectives on parent-delivered interventions in CP. Included studies were critically appraised using validated checklists. Barriers and facilitators to parent-delivered interventions were identified and categorised into subcomponents of The Capability Opportunity and Motivation Model of Behaviour (COM-B), the Theoretical Domains Framework (TDF) and the Behaviour Change Wheel to formulate appropriate practice recommendations. RESULTS: Thirty-four studies were identified which mainly used qualitative or randomised control trial designs. Barriers to parent-delivery included insufficient parental knowledge, lack of confidence and time. Facilitators included staff continuity, empowering parents, efficient resource utilisation and flexible delivery. Practice recommendations emphasise realistic goal setting, tailored parental education and enhancing the coaching skills of therapists. CONCLUSIONS: Fostering parent-delivered interventions requires addressing knowledge gaps, skill and capacity of parents and therapists. Therapists forming strong alliances with parents and setting collaborative realistic goals are key to successful parent-delivered interventions.

Enhancing parents' skills and knowledge regarding CP interventions can increase their confidence (psychological capability) in actively participating in intervention delivery.Structuring services to accommodate family schedules and providing adequate resources (physical and social opportunity) reduce the burden on families and facilitate their engagement.Providing training and resources to therapists enhances their skills and knowledge (psychological capability) in coaching and educating parents effectively.Emphasizing the value of collaborative goal setting in achieving positive outcomes for the child and acknowledging progress (reflective and automatic motivation) motivates both parents and therapists to actively engage in intervention delivery.

Adopting, implementing and assimilating coproduced health and social care innovations involving structurally vulnerable populations: findings from a longitudinal, multiple case study design in Canada, Scotland and Sweden.

BACKGROUND: Innovations in coproduction are shaping public service reform in diverse contexts around the world. Although many innovations are local, others have expanded and evolved over time. We know very little, however, about the process of implementation and evolution of coproduction. The purpose of this study was to explore the adoption, implementation and assimilation of three approaches to the coproduction of public services with structurally vulnerable groups. METHODS: We conducted a 4 year longitudinal multiple case study (2019-2023) of three coproduced public service innovations involving vulnerable populations: ESTHER in Jönköping Region, Sweden involving people with multiple complex needs (Case 1); Making Recovery Real in Dundee, Scotland with people who have serious mental illness (Case 2); and Learning Centres in Manitoba, Canada (Case 3), also involving people with serious mental illness. Data sources included 14 interviews with strategic decision-makers and a document analysis to understand the history and contextual factors relating to each case. Three frameworks informed the case study protocol, semi-structured interview guides, data extraction, deductive coding and analysis: the Consolidated Framework for Implementation Research, the Diffusion of Innovation model and Lozeau's Compatibility Gaps to understand assimilation. RESULTS: The adoption of coproduction involving structurally vulnerable populations was a notable evolution of existing improvement efforts in Cases 1 and 3, while impetus by an external change agency, existing collaborative efforts among community organizations, and the opportunity to inform a new municipal mental health policy sparked adoption in Case 2. In all cases, coproduced innovation centred around a central philosophy that valued lived experience on an equal basis with professional knowledge in coproduction processes. This philosophical orientation offered flexibility and adaptability to local contexts, thereby facilitating implementation when compared with more defined programming. According to the informants, efforts to avoid co-optation risks were successful, resulting in the assimilation of new mindsets and coproduction processes, with examples of how this had led to transformative change. CONCLUSIONS: In exploring innovations in coproduction with structurally vulnerable groups, our findings suggest several additional considerations when applying existing theoretical frameworks. These include the philosophical nature of the innovation, the need to study the evolution of the innovation itself as it emerges over time, greater attention to partnered processes as disruptors to existing power structures and an emphasis on driving transformational change in organizational cultures.

Activity Diversity and Well-Being in Daily Life: Evidence for Heterogeneity Between Older Adults.

OBJECTIVES: Although higher activity diversity is associated with higher well-being at the between-person level, it is unknown whether a day with higher activity diversity is related to higher well-being within persons. Within 24 hr per day, there are a limited number of activities on which individuals could spend their time and energy. Personal resources could influence the expenditure of energy and thus the experience with daily activities. This study examined daily associations between activity diversity and well-being and whether age and self-related health moderated the associations. METHODS: For seven times per day over 2 weeks, 129 retired older adults (Mage = 73.9 years, SDage = 5.6) reported their present activity engagement and positive and negative affect. Daily activity diversity was operationalized as the number of different activity types reported per day. Daily positive and negative affect were assessed as the average of a range of high- and low-arousal affective states. Self-rated health was assessed with an item from the 12-Item Short-Form Health Survey at baseline. RESULTS: Multilevel models showed that daily activity diversity was unrelated, on average, to daily positive or negative affect at the between- and within-person levels. Daily activity diversity was associated with lower daily positive affect in participants with lower self-rated health, but the Johnson-Neyman regions of significance were outside of the range of observed data. DISCUSSION: Divergent patterns were observed in the within-person associations between activity diversity and well-being across participants. Results are discussed in the context of time use and well-being in older age.

Exploring Elinor Ostrom's principles for collaborative group working within a user-led project: lessons from a collaboration between researchers and a user-led organisation.

BACKGROUND: Some research has been undertaken into the mechanisms that shape successful participatory approaches in the context of efforts to improve health and social care. However, greater attention needs to be directed to how partnerships between researchers and user-led organisations (ULOs) might best be formed, practiced, managed, and assessed. We explored whether political economist Elinor Ostrom's Nobel prize winning analysis of common pool resource management-specifically eight principles to enhance collaborative group working as derived from her empirical research-could be usefully applied within a user-led project aiming to co-design new services to support more inclusive involvement of Disabled people in decision-making processes in policy and practice. METHODS: Participant observation and participatory methods over a 16-month period comprising observational notes of online user-led meetings (26 h), online study team meetings (20 h), online Joint Interpretive Forum meetings (8 h), and semi-structured one-to-one interviews with project participants (44 h) at two time points (months 6 and 10). RESULTS: Initially it proved difficult to establish working practices informed by Ostrom's principles for collaborative group working within the user-led project. Several attempts were made to put a structure in place that met the needs of both the research study and the aims of the user-led project, but this was not straightforward. An important shift saw a move away from directly applying the principles to the working practices of the group and instead applying them to specific tasks the group were undertaking. This was a helpful realisation which enabled the principles to become-for most but not all participants-a useful facilitation device in the latter stages of the project. Eventually we applied the principles in a way that was useful and enabled collaboration between researchers and a ULO (albeit in unexpected ways). CONCLUSIONS: Our joint reflections emphasise the importance of being reflexive and responsive when seeking to apply theories of collaboration (the principles) within user-led work. At an early stage, it is important to agree shared definitions and understanding of what 'user-led' means in practice. It is crucial to actively adapt and translate the principles in ways that make them more accessible and applicable within groups where prior knowledge of their origins is both unlikely and unnecessary.

Academic researchers and members of Shaping Our Lives­a national network and user-led organisation of Disabled people and service users­came together to explore whether Elinor Ostrom's Nobel Prize winning work on collaborative group working could usefully inform efforts to co-design new services to promote the inclusive involvement of Disabled people in decision-making processes. We wanted to see if Ostrom's 'principles for collaborative group working' were relevant to and could perhaps facilitate a co-design process led by a user led organisation. At first, we struggled to decide how Ostrom's principles might inform the user-led project. We tried different ways to achieve this and eventually found an approach that most but not all of us found helpful. An important change we made was to stop focusing on how the members of the user-led group were collaborating together and instead to apply the principles to specific aspects of the co-design project that were complex and could be responded to in multiple ways. By the end of the 16-month study we had found a way of using the principles to better enable collaboration between academic researchers and a user-led organisation (although not in the way we had initially anticipated). We learned how Ostrom's principles could be used to facilitate discussion of aspects of project work that are complex and the pros and cons of different plans of action. This project has demonstrated that collaboration between researchers and user-led organisations can be challenging but also has great potential for shared learning.

Measurement and outcomes of co-production in health and social care: a systematic review of empirical studies.

BACKGROUND: Co-production is promoted as an effective way of improving the quality of health and social care but the diversity of measures used in individual studies makes their outcomes difficult to interpret. OBJECTIVE: The objective is to explore how empirical studies in health and social care have described the outcomes of co-production projects and how those outcomes were measured. DESIGN AND METHODS: A scoping review forms the basis for this systematic review. Search terms for the concepts (co-produc* OR coproduc* OR co-design* OR codesign*) and contexts (health OR 'public service* OR "public sector") were used in: CINAHL with Full Text (EBSCOHost), Cochrane Central Register of Controlled trials (Wiley), MEDLINE (EBSCOHost), PsycINFO (ProQuest), PubMed (legacy) and Scopus (Elsevier). There was no date limit. Papers describing the process, original data and outcomes of co-production were included. Protocols, reviews and theoretical, conceptual and psychometric papers were excluded. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guideline was followed. The Mixed Methods Appraisal Tool underpinned the quality of included papers. RESULTS: 43 empirical studies were included. They were conducted in 12 countries, with the UK representing >50% of all papers. No paper was excluded due to the Mixed Methods Quality Appraisal screening and 60% of included papers were mixed methods studies. The extensive use of self-developed study-specific measures hampered comparisons and cumulative knowledge-building. Overall, the studies reported positive outcomes. Co-production was reported to be positively experienced and provided important learning. CONCLUSIONS: The lack of common approaches to measuring co-production is more problematic than the plurality of measurements itself. Co-production should be measured from three perspectives: outputs of co-production processes, the experiences of participating in co-production processes and outcomes of co-production. Both self-developed study-specific measures and established measures should be used. The maturity of this research field would benefit from the development and use of reporting guidelines.

The Mediating Role of Affective States in Short-Term Effects of Activity Engagement on Working Memory in Older Age.

INTRODUCTION: It has been shown that activity engagement is associated with cognitive ability in older age, but mechanisms behind the associations have rarely been examined. Following a recent study which showed short-term effects of activity engagement on working memory performance appearing 6 h later, this study examined the mediating role of affective states in this process. METHODS: For 7 times per day over 2 weeks, 150 Swiss older adults (aged 65-91 years) reported their present (sociocognitive/passive leisure) activities and affective states (high-arousal positive, low-arousal positive, high-arousal negative, and low-arousal negative) and completed an ambulatory working memory task on a smartphone. RESULTS: Multilevel vector autoregression models showed that passive leisure activities were associated with worse working memory performance 6 h later. Passive leisure activities were negatively associated with concurrent high-arousal positive affect (and high-arousal negative affect); high-arousal positive affect was negatively associated with working memory performance 6 h later. A Sobel test showed a significant mediation effect of high-arousal positive affect linking the time-lagged relationship between passive leisure activities and working memory. Additionally, sociocognitive activities were associated with better working memory performance 6 h later. Sociocognitive activities were associated with concurrent higher high- and low-arousal positive affect, which, however, were not associated with working memory performance 6 h later. Thus, a mediation related to sociocognitive activities was not found. DISCUSSION: Passive leisure activities could influence working memory performance through high-arousal positive affect within a timeframe of several hours. Results are discussed in relation to an emotional, and possibly a neuroendocrine, pathway explaining the time-lagged effects of affective states on working memory performance.

Co-designing health services for people living with HIV who have multimorbidity: a feasibility study.

This study explored the feasibility of using an experience-based co-design service improvement methodology to develop a new approach to managing multimorbidity in people living with HIV. Patients with HIV and multimorbidity and staff were recruited from five hospital departments and general practice. Staff and patient experiences were gathered through semi-structured interviews, filmed patient interviews, non-participant observation and patient diaries. A composite film developed from interviews illustrated the touchpoints in the patient journey, and priorities for service improvement were identified by staff and patients in focus groups. Twenty-two people living with HIV and 14 staff took part. Four patients completed a diary and 10 a filmed interview. Analysis identified eight touchpoints, and group work pinpointed three improvement priorities: medical records and information sharing; appointment management; and care co-ordination and streamlining. This study demonstrates that experience-based co-design is feasible in the context of HIV and can inform healthcare improvement for people with multimorbidity.

The short-term effects of activity engagement on working memory performance in older age.

Does a single bout of activity engagement have short-term effects on cognition in daily life? Using a smartphone-based ambulatory assessment design, this study examined the duration of the effects of three types of activities (i.e., sociocognitive, passive leisure, and physical activities) on working memory performance. For seven times per day (i.e., approximately every 2 hr) over 15 days, 150 healthy older adults (aged 65-91 years) in Switzerland reported their present activities and completed working memory assessments. In an examination of within-person concurrent associations, results from a multilevel model showed that passive leisure activities were negatively associated with working memory. Extending this to time-lagged dynamics, results from multilevel vector autoregression models showed that the negative effect of passive leisure activities and a positive effect of sociocognitive activities on working memory performance appeared 6 hr later and faded out completely by 8 hr later. Follow-up analyses showed that the time-lagged effects of activity engagement were evident among relatively younger individuals with lower levels of formal education. In sum, our findings suggest that a single bout of activity engagement has an impact on cognitive performance as quickly as 6 hr. In line with the "use it or lose it" hypothesis, our findings highlight the importance of continuous and active engagement in sociocognitive activities in older age. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Daily activity diversity and daily working memory in community-dwelling older adults.

OBJECTIVE: Cross-sectional and long-term longitudinal studies have shown that engagement in diverse activities benefits cognitive performance in older age, but it is unknown whether the beneficial effect holds within persons on a daily basis. This study examines the within-person association between activity diversity and working memory on the same day and its time-lagged directionality between days. It also examines the effects of potential moderators on the within-person association, including age, education, processing speed, and crystallized intelligence, to understand who may benefit more from daily activity diversity. METHOD: We examined smartphone-based ambulatory assessment data from 150 community-dwelling older adults (aged 65-91 years) from Switzerland. Participants reported their present activity and completed a working memory task (i.e., numerical updating) seven times per day over 15 days. Activity diversity was calculated on a daily level and scores of working memory were averaged within a day. Age, education, processing speed, and crystallized intelligence were assessed in the laboratory at baseline. RESULTS: Multilevel models showed that, within persons, higher daily activity diversity was positively associated with higher daily working memory. Moreover, the prior day's greater activity diversity led to that day's higher working memory, but not vice versa. There were no moderating effects of age, education, and crystallized intelligence, but partial evidence of a moderating effect of processing speed. CONCLUSIONS: Our results on within-person concurrent and time-lagged associations between daily activity diversity and daily working memory strengthen the existing evidence on the beneficial effect of activity diversity on older adults' cognitive performance. Results are discussed in the context of cognitive reserve theory. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Parental decision-making on summer program enrollment: A mixed methods Covid-19 impact study.

BACKGROUND: The closure of childcare organizations (e.g. schools, childcare centers, afterschool programs, summer camps) during the Covid-19 pandemic impacted the health and wellbeing of families. Despite their reopening, parents may be reluctant to enroll their children in summer programming. Knowledge of the beliefs that underlie parental concerns will inform best practices for organizations that serve children. METHODS: Parents (n = 17) participated in qualitative interviews (October 2020) to discuss Covid-19 risk perceptions and summer program enrollment intentions. Based on interview responses to perceived Covid-19 risk, two groups emerged for analysis- "Elevated Risk (ER)" and "Conditional Risk (CR)". Themes were identified utilizing independent coding and constant-comparison analysis. Follow-up interviews (n = 12) in the Spring of 2021 evaluated the impact of vaccine availability on parent risk perceptions. Additionally, parents (n = 17) completed the Covid-19 Impact survey to assess perceived exposure (Range: 0-25) and household impact (Range: 2-60) of the pandemic. Scores were summed and averaged for the sample and by risk classification group. RESULTS: Parents overwhelmingly supported the operation of summer programming during the pandemic due to perceived child benefits. Parent willingness to enroll their children in summer programming evolved with time and was contingent upon the successful implementation of safety precautions (e.g. outdoor activities, increased handwashing/sanitizing of surfaces). Interestingly, parents indicated low exposure (ER: Avg. 6.3 ± 3.1 Range [2-12], CR: Avg. 7.5 ± 3.6 Range [1-14]) and moderate family impact (ER: Avg. 27.1 ± 6.9 Range [20-36], CR: Avg. 33.7 ± 11.4 Range [9-48]) on the impact survey. CONCLUSION: Childcare organizations should mandate and evaluate the implementation of desired Covid-19 safety precautions for their patrons.

A systematic review of behavioural and exercise interventions for the prevention and management of chemotherapy-induced peripheral neuropathy symptoms.

BACKGROUND: Chemotherapy-induced peripheral neuropathy (CIPN) can result in functional difficulties. Pharmacological interventions used to prevent CIPN either show low efficacy or lack evidence to support their use and to date, duloxetine remains the only recommended treatment for painful CIPN. Non-pharmacological interventions such as exercise and behavioural interventions for CIPN exist. PURPOSE: The aims were to (1) identify and appraise evidence on existing behavioural and exercise interventions focussed on preventing or managing CIPN symptoms, (2) describe psychological mechanisms of action by which interventions influenced CIPN symptoms, (3) determine the underpinning conceptual models that describe how an intervention may create behaviour change, (4) identify treatment components of each intervention and contextual factors, (5) determine the nature and extent of patient and clinician involvement in developing existing interventions and (6) summarise the relative efficacy or effectiveness of interventions to lessen CIPN symptoms and to improve quality of life, balance and muscle strength. METHODS: A systematic search of Ovid Medline, Cochrane Library, EMBASE, PsycINFO, Health Management Information Consortium, Global Health and CINAHL was performed to identify articles published between January 2000 to May 2020, followed by OpenGrey search and hand-searching of relevant journals. Studies that explored behavioural and/or exercise interventions designed to prevent or improve symptoms of CIPN in adults who had received or were receiving neurotoxic chemotherapy for any type of cancer, irrespective of when delivered within the cancer pathway were included. RESULTS: Nineteen randomised controlled trials and quasi-experimental studies which explored behavioural (n=6) and exercise (n=13) interventions were included. Four studies were rated as methodologically strong, ten were moderate and five were weak. Ten exercise and two behavioural interventions, including those that improved CIPN knowledge and self-management resources and facilitated symptom self-reporting, led to reduced CIPN symptoms during and/or after chemotherapy treatment. CONCLUSIONS: The extent of potential benefits from the interventions was difficult to judge, due to study limitations. Future interventions should incorporate a clear theoretical framework and involve patients and clinicians in the development process. IMPLICATIONS FOR CANCER SURVIVORS: Our findings show exercise interventions have beneficial effects on CIPN symptoms although higher quality research is warranted. Behavioural interventions that increase patient's CIPN knowledge, improve self-management capacity and enable timely access to symptom management led to reduced CIPN symptoms.

Impact of Virtual vs. In-Person School on Children Meeting the 24-h Movement Guidelines during the COVID-19 Pandemic.

The pandemic mitigation strategy of closing schools, while necessary, may have unintentionally impacted children's moderate-to-vigorous physical activity (MVPA), sleep, and time spent watching screens. In some locations, schools used hybrid attendance models, with some days during the week requiring in-person and others virtual attendance. This scenario offers an opportunity to evaluate the impact of attending in-person school on meeting the 24-h movement guidelines. Children (N = 690, 50% girls, K-5th) wore wrist-placed accelerometers for 14 days during October/November 2020. Parents completed daily reports on child time spent on screens and time spent on screens for school. The schools' schedule was learning for 2 days/week in-person and 3 days/week virtually. Using only weekdays (M-F), the 24-h movement behaviors were classified, and the probability of meeting all three was compared between in-person vs. virtual learning and across grades. Data for 4956 weekdays (avg. 7 d/child) were collected. In-person school was associated with a greater proportion (OR = 1.70, 95% CI: 1.33-2.18) of days that children were meeting the 24-h movement guidelines compared to virtual school across all grades. Students were more likely to meet the screen time (OR = 9.14, 95% CI: 7.05-11.83) and MVPA (OR = 1.50, 95% CI: 1.25-1.80) guidelines and less likely to meet the sleep (OR = 0.73, 95% CI: 0.62-0.86) guidelines on the in-person compared to the virtual school days. Structured environments, such as school, have a protective effect on children's movement behaviors, especially physical activity and screen time.

The experiences of insulin use among older people with Type 2 diabetes mellitus: A thematic synthesis.

BACKGROUND: Type 2 diabetes mellitus is common in older people. Managing diabetes in older people can be challenging due to comorbidities and age-related disabilities, particularly in the context of insulin therapy. The purpose of this review is to explore older people's experiences of insulin use and to consider how these experiences might inform healthcare delivery. REVIEW METHODS: A systematic review with thematic synthesis was conducted and reported in accordance with the PRISMA and ENTREQ statements. MEDLINE, Embase, PsycInfo, CINAHL and Web of Science were searched from 1985 to September 2019 with subsequent updates in December 2019 and June 2022. Included studies were quality appraised, findings tabulated, and results used to inform an integrated thematic synthesis. RESULTS: Fourteen studies that reported insulin experiences with 274 patients aged 60 years and over were included; nine of the studies were qualitative and five used questionnaires surveys. Seven themes emerged that were grouped into treatment-related factors (physical impact of insulin, physical capacity to administer insulin, insulin self-management behaviours) and person-centred factors (emotional factors, social factors, daily living, and personal knowledge/beliefs). Three analytical themes to guide clinical practice were derived from the data: addressing physical capacity and ability, supporting social and emotional issues and improving interactions with healthcare professionals. CONCLUSION: The review indicates issues surrounding the technical aspects of insulin administration, side effects of treatment and reactions to insulin administration are common amongst older people. However, research evidence is limited, and there is an urgent need for empirical, participatory research with older insulin dependent adults with type 2 diabetes. IMPLICATIONS FOR PRACTICE: Healthcare professionals need to ensure that older type 2 diabetes people on insulin are actively involved in their own care, to allow their insulin regimens to be personalised and aligned with their goals and expectations. Tailored educational interventions to reduce treatment hazards and promote physical and psychological wellbeing are also needed for this population.

Co-designing a behavioural intervention for reducing the impact of chemotherapy-induced peripheral neuropathy symptoms: An evidence- and theory-driven approach.

OBJECTIVE: This study aims to co-design an evidence- and theory-based behavioural intervention to reduce the impact of chemotherapy-induced peripheral neuropathy (CIPN) symptoms on patients' quality of life. METHODS: Guided by the Medical Research Council Framework for developing and evaluating complex interventions, our intervention development process was guided by (a) findings of systematic reviews, (b) inductive analysis of 39 h of observational fieldwork, 12 patient and 11 clinician interviews, (c) deductive analysis using the Common-Sense Model to develop a Self-Regulation Model of CIPN and (d) 17 patients and 18 clinicians co-designing the intervention. RESULTS: CIPN perception and coping behaviours were highlighted as processes to target when co-designing an intervention. The processes targeted in our intervention are CIPN perception and coping behaviours, namely, (a) self-monitoring of symptoms, (b) communicating and early reporting of symptoms to clinicians, (c) participating in making chemotherapy dose reduction decisions with their clinicians and (d) engaging in self-management and safety strategies to reduce impact of CIPN symptoms. To address these, a behavioural intervention was deemed suitable. CONCLUSION: We developed a self-regulation model of CIPN and a logic model for documenting the proposed mechanism of action of our co-designed behavioural intervention for reducing impact of CIPN symptoms.

Co-designing a cancer care intervention: reflections of participants and a doctoral researcher on roles and contributions.

BACKGROUND: Patient and Public Involvement is most usually framed in the context of designing, conducting and/or disseminating research. Participatory methods such as Experience-Based Co-Design (EBCD) further allow service users to directly engage in developing, testing and implementing interventions and services alongside healthcare staff. This paper aims to explore how participants in an EBCD project came-over time-to perceive their role and involvement in co-designing a cancer care intervention. METHODS: The findings are based on our reflections, a research diary, email correspondence and fieldnotes from co-design events. Co-design participants who attended most of the ten co-design events took part through written reflections or audio-recorded video calls. Ten reflective pieces were collected from clinicians (n = 4), PPI group members/patient participants (n = 4), a doctoral researcher (n = 1) and a visual illustrator (n = 1). Inductive data analysis of participant reflections was carried out using reflexive thematic analysis. Meeting fieldnotes, email correspondence and the researcher's diary were deductively analysed using the initial themes generated from this inductive analysis. RESULTS: Five main themes were identified: (1) changing perception of roles during the co-design process, (2) defining a 'co-designer', (3) engagement and ownership, (4) role of the research facilitator in maintaining momentum, and (5) perceived benefits of involvement. CONCLUSION: Our findings show the changing perceptions of roles and contributions among participants over time. Patients typically described their role as co-designers in terms simply of sharing their experiences. In contrast, clinicians perceived themselves as co-designers because they were working with patients who were actively involved in decision-making. Levels of engagement were affected by several factors such as time and facilitation, but most participants came to view themselves as co-owners of the intervention. Overall, participants perceived their involvement as a positive experience with clinicians also reporting wider positive impacts on their clinical practice.

Experience-Based Co-Design is a method for helping patients and clinicians work together to improve healthcare services. Studies of participant experiences in projects which use this method and how they perceive the co-designer role are rare. Our study explores how we­patients and clinicians­saw our role and participation as co-designers over time. Our findings are based on our written and verbal reflections of participating in a co-design project aimed at developing an information resource booklet and film for use in cancer care. We also analysed meeting records, email messages between participants and a reflective diary kept by the researcher who was coordinating the project. Our findings show that views of our roles and contributions as co-design participants changed over time. Patients tended to see themselves as 'co-designers' simply because they shared their experiences throughout the co-design process. In contrast, clinicians saw themselves as 'co-designers' because they were working together with patients and making decisions with them. Factors such as time demands, and the skill of the facilitator affected the commitment of participants to co-design activities. Most participants regard the ownership of the newly developed information resources as being shared. Overall, we viewed our participation in the co-design project as a positive experience with results that will benefit clinical practice.

Co-designing models for the communication of genomic results for rare diseases: a comparative study in the Czech Republic and the United Kingdom.

The communication of genomic results to patients and families with rare diseases raise distinctive challenges. However, there is little evidence about optimal methods to communicate results to this group of service users. To address this gap, we worked with rare disease families and health professionals from two genetic/genomic services, one in the United Kingdom and one in the Czech Republic, to co-design that best meet their needs. Using the participatory methodology of Experience-Based Co-Design (EBCD), we conducted observations of clinical appointments (n=49) and interviews with family participants (n=23) and health professionals (n=22) to gather their experience of sharing/receiving results. The findings informed a facilitated co-design process, comprising 3 feedback events at each site and a series of meetings and remote consultations. Participants identified a total of four areas of current service models in need of improvement, and co-designed six prototypes of quality improvement interventions. The main finding was the identification of post-test care as the shared priority for improvement for both health professionals and families at the two sites. Our findings indicate the need to strengthen the link between diagnostics (whether or not a pathogenic variant is found) and post-test care, including psychosocial and community support. This raises implications for the reconfigurations of genomic service models, the redefinition of professional roles and responsibilities and the involvement of rare disease patients and families in health care research.

Mapping definitions of co-production and co-design in health and social care: A systematic scoping review providing lessons for the future.

OBJECTIVES: This study aimed to explore how the concepts of co-production and co-design have been defined and applied in the context of health and social care and to identify the temporal adoption of the terms. METHODS: A systematic scoping review of CINAHL with Full Text, Cochrane Central Register of Controlled Trials, MEDLINE, PsycINFO, PubMed and Scopus was conducted to identify studies exploring co-production or co-design in health and social care. Data regarding date and conceptual definitions were extracted. From the 2933 studies retrieved, 979 articles were included in this review. RESULTS: A network map of the sixty most common definitions and-through exploration of citations-eight definition clusters and a visual representation of how they interconnect and have informed each other over time are presented. Additional findings were as follows: (i) an increase in research exploring co-production and co-design in health and social care contexts; (ii) an increase in the number of new definitions during the last decade, despite just over a third of included articles providing no definition or explanation for their chosen concept; and (iii) an increase in the number of publications using the terms co-production or co-design while not involving citizens/patients/service users. CONCLUSIONS: Co-production and co-design are conceptualized in a wide range of ways. Rather than seeking universal definitions of these terms, future applied research should focus on articulating the underlying principles and values that need to be translated and explored in practice. PATIENT AND PUBLIC CONTRIBUTION: The search strategy and pilot results were presented at a workshop in May 2019 with patient and public contributors and researchers. Discussion here informed our next steps. During the analysis phase of the review, informal discussions were held once a month with a patient who has experience in patient and public involvement. As this involvement was conducted towards the end of the review, we agreed together that inclusion as an author would risk being tokenistic. Instead, acknowledgements were preferred. The next phase involves working as equal contributors to explore the values and principles of co-production reported within the most common definitions.