The development of PAT‐HD: A co‐designed tool to promote physical activity in people with Huntington’s disease

BackgroundHuntington''s disease (HD) is a genetic condition resulting in movement, behavioural and cognitive impairments. People with HD have low levels of physical activity which may be compounded by insufficient support from health‐care professionals.ObjectiveTo evaluate the initial acceptability of a co‐designed tool used within a HD clinic to promote physical activity.DesignCo‐design of a physical activity tool; acceptability evaluation.Setting and participantsCo‐design included people with HD and health‐care professionals. Acceptability was evaluated in a HD clinic in the UK.Main variables studiedA physical activity tool was co‐designed and used within a HD clinic.Main outcome measureAcceptability as assessed by semi‐structured interviews with members of the HD clinic.ResultsForty people visited the HD clinic; 19 were given physical activity advice. Themes around who, where and how promotion of physical activity could take place were identified; concepts of benefits and barriers were threads through each theme.DiscussionWe describe for the first time the co‐design of a HD specific physical activity tool. Our associated acceptability study emphasizes the importance of individualized planning of physical activities in complex neurodegenerative conditions. Perceived barriers were time and lack of knowledge of local resources.ConclusionsA simple tool can support conversations about physical activity with people with HD and is an aid to individualized goal setting. Exploring the use of PAT‐HD within a community setting and development of support systems for health‐care professionals and support workers who are in regular contact with people with HD is required.     

Mitigating unintended consequences of co‐design in health care

BackgroundCo‐design and associated terms are increasingly being used to facilitate values‐based approaches to health‐care improvement. It is messy and complex, involving diverse actors.MethodsWe explore the notion that initiatives have outcomes other than initially planned is neither new nor novel but is overlooked when thinking about co‐design. We explore some of the unintended consequences and outline some optimal conditions that can mitigate challenges.DiscussionAlthough co‐design approaches are being applied in health care, questions remain regarding its ability to produce gains in health outcomes. Little is known about determining whether co‐design is the most suitable approach to achieve the given project goals, the levels of involvement required to realize the benefits of co‐design or the potential unintended consequences. There is a risk of further marginalizing or adding burden to under‐represented populations and/or over‐researched populations.ConclusionUndertaking a co‐design approach without the optimal conditions for inclusive involvement by all may not result in an equal partnership or improve health or care quality outcomes. Co‐design requires on‐going reflective discussions and deliberative thinking to remove any power imbalances. However, without adequate resources, a focus on implementation and support from senior leaders, it is a tough ask to achieve.Patient or Public ContributionThis viewpoint article was written by two academics who have undertaken a significant amount of PPI and co‐design work with members of the public and patient''s right across the health system. Our work guided the focus of this viewpoint as we reflected on our experiences.     

Adolescent and young adult patients as co‐researchers: A scoping review

BackgroundAs part of a research project aimed at evaluating a hospital‐based adolescent transition programme, we asked ourselves what is known about the ethical and methodological challenges of research involving adolescent patients as co‐researchers. The aim of our review was to summarize empirical evidence and identify knowledge gaps about the involvement of young patients as co‐researchers.MethodsWe conducted a scoping review through searches in MEDLINE, EMBASE, PsychINFO, AMED.ResultsWe found reports of young patients being actively engaged as co‐researchers in any stage of a research project, although commonly they were not involved in every stage. Including young patients as co‐researchers is resource demanding and time‐consuming. Involving young patients as co‐researchers contributes to the fulfilment of their right to participation and may improve the relevance of research. Benefits for the young co‐researcher include empowerment, skills building and raised self‐esteem. Few authors go into detail about ethical considerations when involving young co‐researchers. None of the included articles discuss legal considerations.Discussion and conclusionNo lists of recommendations are given, but recommendations can be deduced from the articles. There is need for time, funding and flexibility when including young patients as co‐researchers. Knowledge gaps concern legal and ethical dilemmas of including a vulnerable group as co‐researchers. More reflection is needed about what meaningful participation is and what it entails in this context.Patient or Public ContributionThis review is part of a research project where the hospital youth council has been involved in discussions of focus area and methods.     

Interactional practices in person‐centred care: Conversation analysis of nurse‐patient disagreement during self‐management support

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

An alternate level of care plan: Co‐designing components of an intervention with patients,caregivers and providers to address delayed hospital discharge challenges

ObjectiveTo engage with patients, caregivers and care providers to co‐design components of an intervention that aims to improve delayed hospital discharge experiences.DesignThis is a qualitative study, which entailed working groups and co‐design sessions utilizing World Café and deliberative dialogue techniques to continually refine the intervention.Setting and ParticipantsOur team engaged with 61 participants (patients, caregivers and care providers) in urban and rural communities across Ontario, Canada. A 7‐member Patient and Caregiver Advisory Council participated in all stages of the research.ResultsKey challenges experienced during a delayed discharge by patients, caregivers and care providers were poor communication and a lack of care services. Participants recommended a communication guide to support on‐going conversation between care providers, patients and caregivers. The guide included key topics to cover and questions to ask during initial and on‐going conversations to manage expectations and better understand the priorities and goals of patients and caregivers. Service recommendations included getting out of bed and dressed each day, addressing the psycho‐social needs of patients through tailored activities and having a storyboard at the bedside to facilitate on‐going engagement.Discussion and ConclusionsOur findings outline ways to meaningfully engage patients and caregivers during a delayed hospital discharge. Combining this with a minimal basket of services can potentially facilitate a better care experience and outcomes for patients, their care providers and families.     

Improving the depth of data quality or increasing confusion? Reflections on a data analysis involving members of a self‐help group for relatives of people living with dementia

BackgroundPublic involvement in research to improve data quality and to empower different stakeholders is good scientific practice, but rarely implemented across all research phases.ObjectiveThis article reports on an attempt to involve members of a self‐help group for relatives of people living with dementia as co‐researchers in the data analysis in a short‐term format.MethodsOne researcher identified statements about assistive technologies from 17 interviews with people living with dementia and informal caregivers. Two researchers and six co‐researchers independently assigned pre‐defined values to these statements. Subsequently, we compared the values of the researchers and co‐researchers.ResultsThe members of the self‐help group identified four original values not considered by the researchers: consent, inclusion, participation and respect.DiscussionThe involvement of co‐researchers led to an improvement in the depth of data quality through the joint identification of values concerning assistive technology. Language barriers between researchers, co‐researchers and interview participants impeded the data analysis.ConclusionThe challenges and benefits of a participatory data analysis shown here can provide a basis for recommendations for target group‐specific research involvement. Our recommendations relate to the recruitment of co‐researchers, requirements for conducting a participatory data analysis and the participation degree of people involved.Patient or Public ContributionThe group of co‐researchers participating in the data analysis consisted of relatives of people living with dementia.     

Involving an individual with lived‐experience in a co‐analysis of qualitative data

BackgroundPeople with lived‐experience of the phenomenon under investigation are seldom involved in the analysis of qualitative data, and there exists little guidance for those wishing to involve contributors at this stage of research.AimsTo critically reflect on the process of involving people with lived‐experience in a thematic analysis and to offer direction to other researchers.MethodsAn individual with lived‐experience of residing in prison contributed to a co‐analysis of qualitative data using thematic analysis. This paper reports on involvement at each stage of a thematic analysis and follows an established reporting checklist.ResultsA number of challenges and benefits were encountered in the process of co‐analysing the data. These are discussed in relation to previous research and how to overcome the challenges encountered.ConclusionsThe paper concludes by giving recommendations and guidance for future researchers wishing to involve people with lived‐experience in qualitative data analysis.     

Assessing and promoting partnership between patients and health‐care professionals: Co‐construction of the CADICEE tool for patients and their relatives

ContextPartnership between patients and health‐care professionals (HCPs) is a concept that needs a valid, practical measure to facilitate its use by patients and HCPs.ObjectiveTo co‐construct a tool for measuring the degree of partnership between patients and HCPs.DesignThe CADICEE tool was developed in four steps: (1) generate key dimensions of patient partnership in clinical care; (2) co‐construct the tool; (3) assess face and content validity from patients’ and HCPs’ viewpoints; and (4) assess the usability of the tool and explore its measurement performance.ResultsThe CADICEE tool comprises 24 items under 7 dimensions: 1) relationship of Confidence or trust between the patient and the HCPs; 2) patient Autonomy; 3) patient participation in Decisions related to care; 4) shared Information on patient health status or care; 5) patient personal Context; 6) Empathy; and 7) recognition of Expertise.Assessment of the tool''s usability and measurement performance showed, in a convenience sample of 246 patients and relatives, high face validity, acceptability and relevance for both patients and HCPs, as well as good construct validity.ConclusionsThe CADICEE tool is developed in co‐construction with patients to evaluate the degree of partnership in care desired by patients in their relationship with HCPs. The tool can be used in various clinical contexts and in different health‐care settings.Patient or Public ContributionPatients were involved in determining the importance of constructing this questionnaire. They co‐constructed it, pre‐tested it and were part of the entire questionnaire development process. Three patients participated in the writing of the article.     

Lessons from the field: The role of agility in a coproduction project encompassing the COVID‐19 pandemic

AimWe reflect on our experiences of coproducing a redesigned, COVID‐safe priority‐setting activity at a time of shifting priorities and upheaval to gain insight into good practice.MethodThe project team documented the experience of adapting to COVID‐19 through the reflective project evaluation. We reflect on how COVID disrupted coproduction through radically shifting personal and professional priorities and the implications for good practice.ResultsOur experiences highlighted the role of agility, management capacity, social capital and power in coproduction.ConclusionsCOVID‐19 disrupted and enabled coproduction, compounding tensions and serving as the basis to transcend them. The pandemic created new demands on institutions that initially prompted withdrawal to established power, and team members which redefined them in relation to each other. Shifting priorities and demands forced team members into new, and out of former, roles coming into conflict with enduring power dynamics articulating constructs of expertise and authority in the institutional structure. We consider how the tensions found expression: as governance and human resource concerns, problems with authorizing payments, challenges in institutionally accommodating community researchers and the exclusion of some from participation.     

The manifestation of participation within a co‐design process involving patients,significant others and health‐care professionals

BackgroundDespite intentions to increase user participation in the development of health services, the concept of participation and how it unfolds within studies with a participatory design has rarely been addressed.ObjectiveThe aim of this study was to describe how user participation manifests itself within a co‐design process involving patients, significant others and health‐care professionals, including potential enablers or barriers.MethodsThis study was conducted in the context of a co‐design process of a new person‐centred transition from a hospital to continued rehabilitation in the home involving three patients with stroke, one significant other and 11 professionals. Data were collected by observations during the workshops, semi‐structured interviews and questionnaires.ResultsFour categories: ‘Composition of individuals for an adaptive climate’; ‘The balancing of roles and power’; ‘Different perspectives as common ground for a shared understanding’; and ‘Facilitating an unpredictable and ever‐adaptive process’, with all together nine subcategories, resulted from the analysis. Participation varied between individuals, groups and steps within the process, and on the topic of discussions and the motivation to contribute.Discussion/ConclusionParticipation is not something that is realized by only applying participatory design methodology. Participation manifests itself through the interaction of the participants and their skills to handle different perspectives, roles and assignments. Participation is enabled by individual, group and facilitating aspects. Co‐design processes should allow for varying levels of participation among the participants and throughout the process.Patient or public contributionPatients, significant others and health‐care professionals participated as co‐designers of a care transition model between hospital and home.     

‘Birthing a Better Future’: A mixed‐methods evaluation of an exhibition on the early years of life

BackgroundOur study aimed to evaluate to what extent Zero2 Expo''s ‘Birthing a Better Future’, a co‐created multimedia exhibition, was effective in raising awareness on the importance of the first 1001 days of life and explore what refinements would help to optimize the impact of future exhibitions.MethodsWe conducted a mixed‐methods evaluation of the exhibition delivered in the John Radcliffe Hospital, Oxford. Through convenience sampling, 14 participants were selected to participate in 12 structured interviews and 19 participants completed a questionnaire. Interviews were thematically analysed alongside quantitative analysis of questionnaire responses through Likert scales.ResultsThe majority (78.6%, n = 11/14) of participants who completed the questionnaire either agreed or strongly agreed that the exhibition raised their awareness about the first 1001 days of life. This was supported by the analysis of interviews. The use of art was found to provoke an emotional engagement from participants. Participants felt that the length of the written pieces and location of the exhibition were important factors for designers to consider in future exhibitions.ConclusionThis study demonstrated that multimedia exhibitions, combining science with art, may be an effective way to raise awareness of public health messages. Engaging with key stakeholders will be an essential step in order to improve future public health exhibitions.Public ContributionWhen designing the study, the public reviewed the study tools, which were refined based on their feedback. At every phase of the study, members of the public who are artists co‐created the exhibition content.     

Facilitating personal development for public involvement in health‐care education and research: A co‐produced pilot study in one UK higher education institute

BackgroundPublic involvement in the education of students enrolled on higher education programmes has gained impetus. For students enrolled on professional health‐care programmes and health‐related modules in the UK, there is also a requirement by professional bodies to include “service user” involvement in preparation for entry to a professional health‐care register and continuing professional development. Actively involving patients and members of the public in research is also a requirement by many research funders. In this article, the term Patient and Public Involvement (PPI) will be used throughout to include lay members, volunteers, user and carers.ObjectivesA unique pilot study was introduced across a health faculty to integrate PPI in a deliberate way. It aimed to provide an educational, focused programme of events that was meaningful to develop and inform peoples’ knowledge, skills and confidence for their involvement in the health faculty.DesignPPI members volunteered to sit on a steering group to determine the educational journey; the outcomes of three focus groups with PPI members (N = 32) and academics informed the programme content which included a range of workshops covering the exploration of public roles and barriers to involvement, introduction to research and interviewing skills.ResultsThe workshops were well attended, and outcomes indicated the importance of co‐production when designing, delivering and evaluating programmes.DiscussionCo‐production underpinned this pilot study, resulting in a programme which was meaningfully received by public contributors.RecommendationsCo‐production was seen as integral to this research to ensure that outcomes were indeed “fit for purpose”.     

Reluctant educators and self‐advocates: Older trans adults’ experiences of health‐care services and practitioners in seeking gender‐affirming services

BackgroundTrans‐identifying individuals experience unique barriers and challenges in negotiating health‐care systems due to the cisnormative attitudes and practices which obstruct the receipt of trans‐inclusive care. To date, there has been little exploration of older trans consumers’ experiences of contemporary health‐care services when seeking to transition medically in later life.ObjectivesQualitative findings are presented from a study of trans ageing and trans‐related health and social care needs in Wales, UK (2016‐18). The objectives are to (1) examine supportive and obstructive points of interaction with health‐care professionals, and (2) identify key learning messages for improving trans‐related health care from the perspectives of trans‐identifying adults in later life.DesignTrans‐identifying participants self‐selected to take part in two interviews—a life‐history interview and a semi‐structured interview. Interview data were analysed thematically using the framework method approach.Setting and participantsThis paper focuses on the accounts of 19 participants (50‐74 years of age) who identified as trans and were seeking to transition medically in mid‐ to later life.ResultsFindings indicate how older trans patients are positioned as reluctant educators for GPs in primary care settings and illustrate the transphobic practices and cisnormative assumptions encountered across health‐care interactions and systems that impede their journey of transitioning in later life.Discussion and conclusionsMessages from this study speak to the importance of improving professionals’ knowledge of gender identity diversity across the life course and making changes at a systemic level in redressing cisnormative assumptions and systems that reinforce inequities on the basis of gender identity.     

Perceptions,needs and preferences of chronic disease self‐management support among men experiencing homelessness in Montreal

ObjectiveThis study explored the perceptions, needs and preferences for chronic disease self‐ management (SM) and SM support among men experiencing homelessness.DesignA qualitative interpretive approach was used. Eighteen semi‐structured interviews were conducted with 18 homeless men with a chronic disease at an emergency overnight shelter of Welcome Hall Mission (WHM) in Montreal, Quebec. Interviews were audio‐recorded, transcribed verbatim and thematically analysed.ResultsThe majority of participants perceived SM as important, described confidence to perform medical SM behaviours, and creatively adapted their SM behaviours to homelessness. Emotional SM was described as most challenging, as it was intertwined with the experience of homelessness. Three vulnerable groups were identified: (a) those with no social networks, (b) severe physical symptoms and/or (c) co‐morbid mental illness. The preferred mode of delivery for SM support was through consistent contacts with health‐care providers (HCPs) and peer‐support initiatives.Discussion and ConclusionsDespite competing demands to fulfill basic needs, participants valued chronic disease SM and SM support. However, SM support must address complex challenges relating to homelessness including emotional SM, multiple vulnerabilities and barriers to forming relationships with HCPs.     

Health‐care professionals’ assessment of a person‐centred intervention to empower self‐management and health across chronic illness: Qualitative findings from a process evaluation study

BackgroundPerson‐centred care (PCC) empowers patients to manage their chronic illness and promote their health in accordance with their own beliefs, values and preferences. Drawing on health‐care professional''s (HCP’s) experiences implementing an empowerment‐focused, person‐centred intervention called the Bodyknowledging Program (BKP), we undertook a process evaluation that aimed to assess the impact on patient health and well‐being.MethodsWe used individual in‐depth interviews and semi‐structured focus groups comprising n = 8 interprofessional HCP who facilitated intervention sessions with n = 58 patients situated in Norwegian specialist care sites. Content analysis was used to analyse the data and summarize major themes.ResultsHealth‐care professional interviews revealed four main ways in which the intervention operated in support of health‐related patient outcomes: (i) addressing the whole person; (ii) hope and affirmation; (iii) expanding recovery; and (iv) social support and revitalized relationships. The intervention provided new tools for patients to understand the social, emotional and physical impact of their illness. Health‐care professional reported new insights to facilitate patient engagement and to promote patients’ health.ConclusionsThe Bodyknowledging Program facilitated patient engagement through the promotion of patient‐centred care while developing the patients’ ability to exploit their own resources for effectively managing their health within illness. The process evaluation supported the underlying theoretical basis of the intervention and was suggestive of its potential transferability elsewhere.     

Reporting the whole story: Analysis of the ‘out‐of‐scope’ questions from the James Lind Alliance Teenage and Young Adult Cancer Priority Setting Partnership Survey

ObjectiveWe conducted a UK‐wide survey to identify the top 10 research questions for young people''s cancer. We conducted secondary analysis of questions submitted, which were ‘out‐of‐scope’ of the original survey aim. We sought to disseminate these questions, to inform practice, policy and the development of potential interventions to support young people with cancer.DesignJames Lind Alliance Priority Setting Partnership.ParticipantsYoung people aged 13‐24 with a current/previous cancer diagnosis, their families/friends/partners and professionals who work with this population.MethodsEight hundred and fifty‐five potential research questions were submitted, and 326 were classified as ‘out‐of‐scope’. These questions, along with 49 ‘free‐text’ comments, were analysed using thematic analysis.ResultsThe 375 out‐of‐scope questions and comments were submitted by: 68 young people, 81 family members/partners/friends and 42 professionals. Ten overarching themes were identified: diagnostic experience; communication; coordination of care; information needs and lack of information; service provision; long‐term effects and aftercare support; family support; financial impact; end‐of life care; and research methods and current research.ConclusionsThe need to tailor services, information and communication is a striking thread evidenced across the ‘out‐of‐scope’ questions. Gaps in information highlight implications for practice in revisiting information needs throughout the cancer trajectory. We must advocate for specialist care for young people and promote the research priorities and these findings to funding bodies, charities, young people and health and social care policymakers, in order to generate an evidence base to inform effective interventions across the cancer trajectory and improve outcomes.Patient/public contributionsPatients and carers were equal stakeholders throughout.     

Knowledge sharing to support long‐term condition self‐management—Patient and health‐care professional perspectives

BackgroundIncreased self‐management is a suggested solution to the burden on health‐care services of long‐term conditions (LTCs). This requires effective sharing of knowledge between health‐care professionals and patients, and is an underexplored area.ObjectiveTo understand how patients and health‐care professionals (HCPs) share and utilize knowledge in the social context of health‐care interactions within long‐term condition management.MethodsThematic analysis of 93 hours of observations of health‐care interactions and 33 semi‐structured interviews involving patients, carers and HCPs.Results3 themes were identified: normative social roles, differing professional roles and the value of knowledge. Knowledge sharing was a complex process heavily influenced by social and cultural norms within the health‐care context. Not all knowledge was easily shared within routine health‐care interactions.DiscussionThe social context in which health‐care is practised influences what knowledge is shared and how this is achieved. It favours sharing of clinical knowledge from HCPs to patients and disadvantages patients in their ability to share their unique knowledge based on lived experience of illness. The opportunities for patients to be supported in their knowledge, skills and confidence within routine health‐care interactions are limited.ConclusionBoth patients and HCPs need support to recognize the characteristics of the social context of health care and their understandings of their roles within this in order for them to move beyond accepted behaviours to develop more effective partnership working.Patient or Public ContributionPatients were involved in initial design of the study, particularly ethics of ethnographic observation.     

Experiences of self‐care during the COVID‐19 pandemic among individuals with rheumatoid arthritis: A qualitative study

ObjectivesThis study aimed to explore the impact of the coronavirus disease 2019 (COVID‐19) pandemic on self‐care of individuals living with rheumatoid arthritis (RA).MethodsGuided by a constructivist, qualitative design, we conducted one‐to‐one in‐depth telephone interviews between March and October 2020 with participants with RA purposively sampled for maximum variation in age, sex and education, who were participating in one of two ongoing randomized‐controlled trials. An inductive, reflexive thematic analysis approach was used.ResultsTwenty‐six participants (aged 27–73 years; 23 females) in British Columbia, Canada were interviewed. We identified three themes: (1) Adapting to maintain self‐care describes how participants took measures to continue self‐care activities while preventing virus transmissions. While spending more time at home, some participants reported improved self‐care. (2) Managing emotions describes resilience‐building strategies such as keeping perspective, positive reframing and avoiding negative thoughts. Participants described both letting go and maintaining a sense of control to accommodate difficulties and emotional responses. (3) Changing communication with health professionals outlined positive experiences of remote consultations with health professionals, particularly if good relationships had been established prepandemic.ConclusionThe insights gained may inform clinicians and researchers on ways to support the self‐care strategies of individuals with RA and other chronic illnesses during and after the COVID‐19 pandemic. The findings reveal opportunities to further examine remote consultations to optimize patient engagement and care.Patient or Public ContributionThis project is jointly designed and conducted with patient partners in British Columbia, Canada. Patient partners across the United Kingdom also played in a key role in providing interpretations of themes during data analysis.