Access of older people to primary health care in low and middle-income countries: A systematic scoping review.

INTRODUCTION: Ensuring access for older people to Primary Health Care (PHC) is vital to achieve universal health coverage, improve health outcomes, and health-system performance. However, older people living in Low-and Middle-Income Countries (LMICs) face barriers constraining their timely access to appropriate care. This review aims to summarize the nature and breadth of literature examining older people's experiences with access to PHC in LMICs, and access barriers and enablers. METHODS: Guided by Arksey and O'Malley's framework, four databases [CINAHL, Cochrane, PubMed, and Embase] were systematically searched for all types of peer-reviewed articles published between 2002 and 2023, in any language but with English or French abstract. Gray literature presenting empirical data was also included by searching the United Nations, World Health Organization, and HelpAge websites. Data were independently screened and extracted. RESULTS: Of 1165 identified records, 30 are included. Data were generated mostly in Brazil (50%) and through studies adopting quantitative designs (80%). Older people's experiences varied across countries and were shaped by several access barriers and enablers classified according to the Patient-Centered Access to Healthcare framework, featuring the characteristics of the care delivery system at the supply side and older people's attributes from the demand side. The review identifies that most access barriers and enablers pertain to the availability and accommodation dimension, followed by the appropriateness, affordability, acceptability, and approachability of services. Socio-economic level and need perception were the most reported characteristics that affected older people's access to PHC. CONCLUSIONS: Older people's experiences with PHC access varied according to local contexts, socioeconomic variables, and the provision of public or private health services. Results inform policymakers and PHC practitioners to generate policies and services that are evidence-based and responsive to older people's needs. Identified knowledge gaps highlight the need for research to further understand older people's access to PHC in different LMICs.

Reducing risk behaviours after stroke: An overview of reviews interrogating primary study data using the Theoretical Domains Framework.

BACKGROUND: Lifestyle changes, in addition to preventive medications, optimise stroke secondary prevention. Evidence from systematic reviews support behaviour-change interventions post-stroke to address lifestyle-related risk. However, understanding of the theory-driven mediators that affect behaviour-change post-stroke is lacking. METHODS: Electronic databases MEDLINE, Embase, Epistemonikos and Cochrane Library of Systematic Reviews were searched to March 2023 for systematic reviews addressing behaviour-change after stroke. Primary studies from identified systematic reviews were interrogated for evidence supporting theoretically-grounded interventions. Data were synthesized in new meta-analyses examining behaviour-change domains of the Theoretical Domains Framework (TDF) and secondary prevention outcomes. RESULTS: From 71 identified SRs, 246 primary studies were screened. Only 19 trials (N = 2530 participants) were identified that employed theoretically-grounded interventions and measured associated mediators for behaviour-change. Identified mediators mapped to 5 of 14 possible TDF domains. Trial follow-up ranged between 1-12 months and no studies addressed primary outcomes of recurrent stroke or cardiovascular mortality and/or morbidity. Lifestyle interventions targeting mediators mapped to the TDF Knowledge domain may improve the likelihood of medication adherence (OR 6.08 [2.79, 13.26], I2 = 0%); physical activity participation (OR 2.97 [1.73, 5.12], I2 = 0%) and smoking cessation (OR 10.37 [3.22, 33.39], I2 = 20%) post-stroke, supported by low certainty evidence; Lifestyle interventions targeting mediators mapping to both TDF domains of Knowledge and Beliefs about Consequences may improve medication adherence post-stroke (SMD 0.36 [0.07, 0.64], I2 = 13%, very low certainty evidence); Lifestyle interventions targeting mediators mapped to Beliefs about Capabilities and Emotions domains may modulate low mood post-stroke (SMD -0.70 [-1.28, -0.12], I2 = 81%, low certainty evidence). CONCLUSION: Limited theory-based research and use of behaviour-change mediators exists within stroke secondary prevention trials. Knowledge, Beliefs about Consequences, and Emotions are the domains which positively influence risk-reducing behaviours post-stroke. Behaviour-change interventions should include these evidence-based constructs known to be effective. Future trials should address cardiovascular outcomes and ensure adequate follow-up time.

Understanding the use of digital technologies to provide disability services remotely during the COVID-19 pandemic; a multiple case study design.

BACKGROUND: Using digital technologies to provide services and supports remotely may improve efficiency and accessibility of healthcare, and support people with disabilities to live independently. This study aimed to explore the experience of using digital technologies to access and provide disability services and supports during the Covid-19 pandemic, from the perspective of people with disabilities, families and service providers. METHODS: Using a multiple case study design, we purposively sampled three cases based on service user characteristics and geographical reach of the service. We conducted semi-structured interviews with 40 service users and service providers. Topic guides and analysis were informed by the Consolidated Framework for Implementation Research (CFIR). Analysis followed a largely deductive approach, using the CFIR constructs as a coding framework. A summary memo was developed for each case. Influence and strength of each construct was rated to identify constructs that influenced implementation of digital technologies. Ratings were compared across services to identify facilitators and barriers to implementation. RESULTS: Service users and providers were positive about using digital technologies to access and provide disability services and supports remotely. Advantages over in-person delivery included reduced travel time, increased opportunity for peer support and peer learning, more choice and opportunity to participate in activities, and an enhanced sense of self while accessing services from the secure environment of their home. The urgency to identify new modes of service delivery to meet the needs of service users during Covid-19 was a strong facilitator but did not necessarily result in successful implementation. Other factors that were strong facilitators were the use of adaptations to enable service users to access the online service, service users' willingness to try the online service, service users' persistence when they encountered challenges, and the significant time and effort that service providers made to support service users to participate in the online service. Barriers to implementation included the complexity of accessing online platforms, poor design quality of online platforms, and organisations prioritising in-person delivery over online services. CONCLUSIONS: These findings may allow service providers to leverage facilitators that support implementation of online disability services and supports.

Transition from child to adult services for young people with cerebral palsy in Ireland: Influencing factors at multiple ecological levels.

AIM: To explore the factors that influence the process of transitioning from child to adult services in Ireland among young people with cerebral palsy, their parents, and service providers. METHOD: This study followed a qualitative descriptive approach. Semi-structured interviews were conducted with 54 participants, including young people with cerebral palsy aged 16 to 22 years (n = 13), their parents (n = 14), and service providers (n = 27). Data were analysed using the Framework Method. Findings were categorized using an ecological model across four levels: individual, microsystem, mesosystem, and exosystem. RESULTS: Limited awareness, preparation, and access to information hindered successful transition. Microsystem factors such as family knowledge, readiness, resilience, and health professional expertise influenced transition experience. Mesosystem factors encompassed provider-family interaction, interprofessional partnerships, and interagency collaboration between child and adult services. Exosystem factors included inadequate availability and distribution of adult services, limited referral options, coordination challenges, absence of transition policies, staffing issues, and funding allocation challenges. INTERPRETATION: Transition is influenced by diverse factors at multiple ecological levels, including interactions within families, between health professionals, and larger systemic factors. Given the complexity of transition, a comprehensive multi-level response is required, taking into account the interactions among individuals, services, and systems.

What Are the Care Needs of Families Experiencing Sudden Cardiac Arrest? A Survivor- and Family-Performed Systematic Review, Qualitative Meta-Synthesis, and Clinical Practice Recommendations.

INTRODUCTION: Cardiac arrest care systems are being designed and implemented to address patients', family members', and survivors' care needs. We conducted a systematic review and a meta-synthesis to understand family experiences and care needs during cardiac arrest care to create treatment recommendations. METHODS: We searched eight electronic databases to identify articles. Study findings were extracted, coded and synthesized. Confidence in the quality, coherence, relevance, and adequacy of data underpinning the resulting findings was assessed using GRADE-CERQual methods. RESULTS: In total 4181 studies were screened, and 39 met our inclusion criteria; these studies enrolled 215 survivors and 418 family participants-which includes both co-survivors and bereaved family members. From these studies findings and participant data we identified 5 major analytical themes: (1) When the crisis begins we must respond; (2) Anguish from uncertainty, we need to understand; (3) Partnering in care, we have much to offer; (4) The crisis surrounding the victim, ignore us, the family, no longer; (5) Our family's emergency is not over, now is when we need help the most. Confidence in the evidence statements are provided along with our review findings. DISCUSSION: The family experience of cardiac arrest care is often chaotic, distressing, complex and the aftereffects are long-lasting. Patient and family experiences could be improved for many people. High certainty family care needs identified in this review include rapid recognition and response, improved information sharing, more effective communication, supported presence and participation, or supported absence, and psychological aftercare.

Interventions to support adolescents and young adults with the healthcare transition from paediatric to adult nephrology health services: A scoping review protocol.

Background: Due to technological advancements and improved medical management of adolescents and young adults (AYAs) living with renal disease, there has been an exponential increase noted in the number of patients advancing from the paediatric to the adult nephrology healthcare setting. Subsequently, more AYAs are required to undergo the process of healthcare transition from paediatric to adult healthcare services. This process can be a challenging period for young people and families and is often associated with a decline in physical and psychosocial health outcomes of AYAs with renal disorders. To ensure a successful transition, AYAs must develop the ability to manage their renal condition, including the medical and psychosocial aspects of their condition, independently. Despite significant research into the transition from paediatric to adult healthcare for this unique patient cohort, the transition period remains a challenge at times. This scoping review aims to map, explore, and understand the interventions that are currently available to offer positive perceptions and experiences of transition for both AYAs living with renal disorders and their families. Methods: A systematic literature search will be conducted of PubMed, PsycInfo, CINAHL, ASSIA, EMBASE and Web of Science databases from the year 2000 to present. Two independent reviewers will screen the peer-reviewed literature obtained and assess them against the inclusion criteria to determine their inclusion eligibility. Data will be extracted and synthesised using a template refined by the authors. The scoping review will be undertaken in accordance with PRISMA-ScR guidelines. Data will undergo a formal critical appraisal using recognised appraisal tools. Conclusions: Through mapping this knowledge, the scoping review will aim to identify interventions that are currently available and identify gaps within the literature. This evidence may support the development of transitional care interventions in the future, promote patient satisfaction, and improve patient outcome measures and experiences.

Expanding health technology assessment towards broader value: Ireland as a case study.

Healthcare innovations often represent important improvements in population welfare, but at what cost, and to whom? Health technology assessment (HTA) is a multidisciplinary process to inform resource allocation. HTA is conventionally anchored on health maximization as the only relevant output of health services. If we accept the proposition that health technologies can generate value outside the healthcare system, resource allocation decisions could be suboptimal from a societal perspective. Incorporating "broader value" in HTA as derived from social values and patient experience could provide a richer evaluative space for informing resource allocation decisions. This article considers how HTA is practiced and what its current context implies for adopting "broader value" to evaluating health technologies. Methodological challenges are highlighted, as is a future research agenda. Ireland serves as an example of a healthcare system that both has an explicit role for HTA and is evolving under a current program of reform to offer universal, single-tier access to public services. There are various ways in which HTA processes could move beyond health, including considering the processes of care delivery and/or expanding the evaluative space to some broader concept of well-being. Methods to facilitate the latter exist, but their adaptation to HTA is still emerging. We recommend a multi-stakeholder working group to develop and advance an international agenda for HTA that captures welfare/benefit beyond health.

COVID-19 Public Health Measures and Patient and Public Involvement in Health and Social Care Research: An Umbrella Review.

An umbrella review of previously published systematic reviews was conducted to determine the nature and extent of the patient and public involvement (PPI) in COVID-19 health and social care research and identify how PPI has been used to develop public health measures (PHM). In recent years, there has been a growing emphasis on PPI in research as it offers alternative perspectives and insight into the needs of healthcare users to improve the quality and relevance of research. In January 2022, nine databases were searched from 2020-2022, and records were filtered to identify peer-reviewed articles published in English. From a total of 1437 unique records, 54 full-text articles were initially evaluated, and six articles met the inclusion criteria. The included studies suggest that PHM should be attuned to communities within a sociocultural context. Based on the evidence included, it is evident that PPI in COVID-19-related research is varied. The existing evidence includes written feedback, conversations with stakeholders, and working groups/task forces. An inconsistent evidence base exists in the application and use of PPI in PHM. Successful mitigation efforts must be community specific while making PPI an integral component of shared decision-making.

An examination of relational dynamics of power in the context of supported (assisted) decision-making with older people and those with disabilities in an acute healthcare setting.

INTRODUCTION: Supported (assisted) healthcare decision-making (ADM) focuses attention on how people with disabilities, including cognitive impairments, can be best supported to make decisions about their health and social care on an equitable basis with others. Meaningful implementation of legal frameworks for ADM challenges long-held presumptions about who has access to valued decision-making resources, influence and power within a particular socio-cultural setting. This study aims to explore the relational power dynamics around ADM with older people in acute care settings. METHODS: This study adopts a critical hermeneutic approach to qualitatively explore the lived experience of ADM from the perspectives of Health and Social Care Professionals (N = 26). This is supported by an exploration of the experiences of older people (N = 4), older people with a diagnosis of dementia (N = 4) and family carers (N = 5). RESULTS: We present three themes of data analysis that represent three spaces where the relational aspects of power in ADM are manifested. The first space, centralising decision-making power within multidisciplinary teams identified the privileging of physicians in traditional hierarchical leadership models that may lead to the implicit exclusion of family carers and some Health and Social Care Professionals in the ADM process. Privileging cognitive and communication competence identified a tendency to attribute decision-making autonomy to those with cognitive and communication competency. The final space, balancing the duty of care and individual autonomy, recognises acute care settings as typically risk-averse cultures that limit autonomy for decisions that carry risk, especially for those with cognitive impairment. CONCLUSION: Findings indicate the need to address cultural sources of power operating through social norms premised on ageist and ableist ideologies. It is necessary to challenge institutional barriers to meaningful ADM including positional power that is associated with hierarchies of influence and protectionism. Finally, meaningful ADM requires resistance to the disempowerment created by structural, economic and social circumstances which limit choices for decision-making. PATIENT OR PUBLIC CONTRIBUTION: A public and patient involvement panel of older people were consulted in the development of the grant application (HRB: APA-2016-1878). Representatives from Alzheimer's Society Ireland and Family Carers Ireland were steering committee members guiding design and strategy.

Caring for the invisible and forgotten: a qualitative document analysis and experience-based co-design project to improve the care of families experiencing out-of-hospital cardiac arrest.

OBJECTIVES: The objectives of this project were to collect and analyze clinical governance documents related to family-centred care and cardiac arrest care in Canadian EMS organizations; and to improve the family-centredness of out-of-hospital cardiac arrest care through experience-based co-design. METHODS: We conducted qualitative document analysis of Canadian EMS clinical governance documents related to family-centred and cardiac arrest care, combining elements of content and thematic analysis methods. We then used experience-based co-design to develop a family-centred out-of-hospital cardiac arrest care policy and procedure template. RESULTS: Thirty-five Canadian EMS organizations responded to our requests, representing service area coverage for 80% of the Canadian population. Twenty documents were obtained for review and six overarching themes were identified: addressing family in event of in-home death, importance of family, family member escort, provider discretion and family presence discouraged. Informed by our qualitative analysis we then co-designed a policy and procedure template was created that prioritizes patient care while promotes family-centredness. CONCLUSIONS: There were few directives to support family-centred care by Canadian EMS organizations. A family-centred out-of-hospital cardiac arrest care policy and procedure template was developed using experience-based co-design to assist EMS organizations improve the family-centredness of out-of-hospital cardiac arrest care.

RéSUMé: OBJECTIFS: Les objectifs de ce projet étaient de recueillir et d'analyser des documents de gouvernance clinique liés aux soins centrés sur la famille et aux soins de l'arrêt cardiaque dans les organisations canadiennes de SMU; et d'améliorer le caractère centré sur la famille des soins en cas d'arrêt cardiaque à l'extérieur de l'hôpital grâce à une co-conception fondée sur l'expérience. MéTHODES: Nous avons effectué une analyse qualitative des documents de gouvernance clinique des SMU canadiens liés aux soins axés sur la famille et aux arrêts cardiaques, en combinant des éléments de contenu et des méthodes d'analyse thématique. Nous avons ensuite utilisé la co-conception fondée sur l'expérience pour élaborer un modèle de politique et de procédure de soins en cas d'arrêt cardiaque centrés sur la famille en dehors de l'hôpital. RéSULTATS: Trente-cinq organisations Canadiennes de SMU ont répondu à nos demandes, ce qui représente une couverture de zone de service pour 80 % de la population canadienne. Vingt documents ont été obtenus aux fins d'examen et six thèmes principaux ont été cernés: s'adresser à la famille en cas de décès à domicile, l'importance de la famille, accompagnement d'un membre de la famille, la discrétion du fournisseur et la présence de la famille découragée. Éclairés par notre analyse qualitative, nous avons ensuite co-conçu un modèle de politique et de procédure qui priorise les soins aux patients tout en favorisant l'orientation familial. CONCLUSIONS: Il y avait peu de directives pour soutenir les soins axés sur la famille par les organisations canadiennes de SMU. Un modèle de politique de soins d'arrêt cardiaque centré sur la famille a été élaboré à l'aide d'une co-conception basée sur l'expérience pour aider les organisations de SMU à améliorer l'orientation familiale des soins en cas d'arrêt cardiaque hors hôpital.

Children and young people's experiences of living with rare diseases: An integrative review.

PROBLEM: Rare diseases are any disease affecting fewer than five people in 10,000. More than 8000 rare diseases and 50-75% of all rare diseases affect children. The purpose of this review was to critically appraise and synthesize existing literature relating to the impact of rare diseases on children's day-to-day lives. ELIGIBILITY CRITERIA: An integrative literature review was conducted using the CINAHL Plus, PsycINFO, and PubMed databases. Studies were included if they were a primary source was published between the years 2005 and 2019 and written in the English language. SAMPLE: Eight primary sources met the inclusion criteria. RESULTS: Seven main themes emerged from the review as follows: (i) the experience of stigmatisations, (ii) self-consciousness, (iii) restrictions in independent living, (iv) developing resilience/coping strategies, (v) psychological and emotional impact, (vi) social impact vs social connectedness and (vii) transition challenges. CONCLUSIONS: The experience of having a rare illness differed across different age groups. Children (typically aged 3-10) with rare diseases generally view themselves and their lives the same way like their healthy peers. They were more likely to report being adaptive and resilient than those aged 12 or older. Young people reported being different compared to young children, and they faced numerous challenges related to their illness. IMPLICATIONS FOR PRACTICE: To provide the best possible level of care for children and families with rare disorders, health services must be informed and equipped to provide the necessary supports specific to the unique needs of children and young people living with rare diseases.

Transition to adult services experienced by young people with cerebral palsy: A cross-sectional study.

AIM: To assess if young people with cerebral palsy experience and health professionals provide practices that may improve transition from child to adult health services. METHOD: Seventy-five young people (31 females, 44 males; mean age 18 years 5 months [standard deviation 2 years 2 months]) and/or parents and 108 health professionals completed a questionnaire describing their experience or the provision of nine transition practices. RESULTS: The percentage of young people reporting each practice was: appropriate parent involvement (90%); promotion of health self-efficacy (37%); named worker who supports the transition process (36%); self-management support for physical health (36%); self-management support for mental health (17%); information about the transition process (24%); meeting the adult team (16%); and life skills training (16%). Post-discharge, 10% of young people reported that their general practitioner (GP) received a discharge letter. The percentage of health professionals reporting each practice was: promotion of health self-efficacy (73.2%); self-management support (73.2%); information (69%); consulting the parent and young person about parent involvement (63% and 66%); discharge letter to a GP (55%); life skills training (36%); named worker (35%); meeting the adult team (30%); and senior manager (20%). INTERPRETATION: Many young people did not experience practices that may improve the experience and outcomes of transition. Young people should be involved in the development and delivery of transition to ensure it meets their needs. WHAT THIS PAPER ADDS: Many young people with cerebral palsy (CP) do not receive support that may improve the experience of transition. Appropriate protocols and training for health professionals may improve the provision of transition and reduce inconsistency in care between and within organizations. Young people and their families should be involved in service design, delivery, and evaluation related to the transition to ensure it meets their needs.

Increasing physical activity levels in care homes for older people: a quantitative scoping review of intervention studies to guide future research.

PURPOSE: Physical activity (PA) levels in older care home residents are low. This has detrimental effects on health. Little is known about the nature of interventions to increase physical activity in this population. METHODS: A scoping review to: (1) identify and describe interventions to increase PA in older care home residents, and (2) describe the extent to which interventions address care home context, systemised by social-ecological models. We systematically searched databases for peer-reviewed intervention studies to increase PA in older people resident in care homes. Data were extracted using the template for intervention description and replication (TIDieR) and mapped against a social-ecological framework to locate the intervention focus. RESULTS: The 19 included studies consisted of interventions tested in randomised or quasi-experimental trial designs. Interventions consisted of single or multiple components and predominantly addressed individual resident level factors (such as muscle strength) rather than broader social and environmental aspects of context. Interventions were not all fully described. For most interventions a distinct theoretical foundation was not identified. Interventions were mostly delivered by health professionals and research staff external to care homes. CONCLUSIONS: Future interventions should address contextual care home factors and should be clearly described according to intervention description guidance.Implications for rehabilitationPhysical activity holds promise as an effective means of improving health and function in older care home residents, but physical activity levels in this population are low.Several reasons beyond the individual resident but related to care home contextual factors may explain low PA in care homesTo date, contextual factors influencing PA in care homes have been poorly addressed in interventions.Wider care home context (social, cultural, and environmental factors) must be considered in future interventions.

A systematic review and narrative synthesis of the experiences with caring for older people living with dementia in Sub-Saharan Africa.

BACKGROUND: In low- and middle-income countries, including sub-Saharan Africa little is known about the experiences with caring for people living with dementia. The purpose of this systematic review and narrative synthesis was to examine the experiences with caring for older people living with dementia at home. RESULTS: In total, 366 abstracts were identified and following screening, 19 studies were included in the synthesis. Six themes were identified: conceptualising dementia, caregiving arrangements, the impact of caregiving, caregiver identity and role, managing caregiving, unmet caregiver needs. CONCLUSION: There is a dearth of research in relation to caregiving for older people living with dementia in sub-Saharan Africa. There is need for better information campaigns and support programs directed at family and professional caregivers in this context.

Co-creating Digital Stories With UK-Based Stroke Survivors With the Aim of Synthesizing Collective Lessons From Individual Experiences of Interacting With Healthcare Professionals.

Background: Stroke survivor narratives can provide valuable insight into experiences of healthcare and beyond. There is need to further understand collective lessons from stroke survivor narratives, yet prior studies utilizing digital storytelling tend to not synthesize lessons from individual experiences. This study aims to develop a novel method to co-create digital stories with stroke survivors that will aim to synthesize and portray important collective lessons from individual stroke survivors' experiences of interacting with healthcare professionals. Methods: This study follows-up a qualitative study conducted with 30 stroke survivors exploring factors that help or hinder survivors to positively reconfigure their identity post-stroke. Five co-creation workshops were conducted with a subset of UK-based stroke survivors from this previous study. Participants were invited to join through: online workshops, an online bulletin board, and as an advisor. A four-stage workshop framework was developed through the integration of UK Design Council's Double Diamond method, digital storytelling strategies and the Behavior Change Wheel (BCW) framework for developing behavioral change interventions. Findings: Six online workshop participants (three male, three female; aged 33-63; time since stroke 2-16 years) co-created digital stories that share six collective lessons aimed at increasing empathy and encouraging behavior change in healthcare professionals (HCPs) working with stroke survivors. Online bulletin board participants (n = 1) and advisors (n = 5) supported the co-creation process. Collective lessons identified were: (1) Stroke has a variety of symptoms that must all be considered; (2) Stroke can affect anyone of any age and not just the elderly; (3) Assumptions should not be made about a survivor's lifestyle or habits; (4) It is important to acknowledge the person behind the stroke and ensure that they are communicated with and listened to; (5) Stroke survivors can often feel unprepared for the reality of life after stroke; (6) Adapting to life after stroke is a long-term process requiring long-term support. Conclusion: Stroke survivor stories highlighted preconceptions, attitudes and behaviors embedded within healthcare that negatively impacted their experiences and recovery. The novel methodology employed in this study enabled these stories to be synthesized into collective lessons to bring about improvements in these behaviors in future.

A protocol to evaluate the impact of embedding Public and Patient Involvement in a structured PhD program for stroke care.

Background: Embedding Public and Patient Involvement (PPI) in postgraduate research has been recognized as an important component of post-graduate training, providing research scholars with an awareness and a skillset in an area which prepares them for future roles as healthcare researchers. Improving Pathways for Acute STroke And Rehabilitation (iPASTAR) is a structured PhD training program [Collaborative Doctoral Award (CDA)] which aims to design a person-centered stroke pathway throughout the trajectory of stroke care, to optimize post-stroke health and wellbeing. PPI is embedded at all stages. Purpose: The iPASTAR research programme was strongly informed by a round-table PPI consultation process with individuals who experienced stroke and who provided broad representation across ages, gender, geographical locations (urban and rural) and the PhD themed areas of acute care, early supported discharge and lifestyle-based interventions after stroke. Four PhD scholars taking part in the CDA-iPASTAR now work collaboratively with four stroke champions, supported by a wider PPI advisory panel. Methods: This study will evaluate the process and impact of embedding PPI during a PhD program. We will conduct a longitudinal mixed-methods evaluation, conducting focus groups at 24, 36, and 48 months to explore the experiences of the key stakeholders involved. The participants will include PhD scholars, PPI partners (PPI Advisory Group and PPI Champions), PhD supervisors and a PPI manager. An independent researcher will conduct the evaluation. We will include focus groups, individual interviews and participant reflections. Qualitative data will be analyzed using thematic and content analysis, quantitative data will be analyzed using descriptive statistics. Discussion: PPI and patient voice initiatives bring together researchers, family, and people with health care issues into meaningful dialogue and allow the development of a patient-voice learning network. Embedding PPI training within a PhD program can build meaningful capacity in PPI partnerships in stroke research.

'Language has been granted too much power'.1,p.1 Challenging the power of words with time and flexibility in the precommencement stage of research involving those with cognitive impairment.

Meaningful and inclusive involvement of all people affected by research in the design, management and dissemination of that research requires skills, time, flexibility and resources. There continue to be research practices that create implicit and explicit exclusion of some members of the public who may be 'seldom heard' or 'frequently ignored'. Our focus is particularly on the involvement of people living with cognitive impairment, including people with one of the many forms of dementia and people with learning disabilities. We reflect especially on issues relating to the precommencement stage of research. We suggest that despite pockets of creative good practice, research culture remains a distinct habitus that continues to privilege cognition and articulacy in numerous ways. We argue that in perpetuating this system, some researchers and the institutions that govern research are committing a form of bureaucratic violence. We call for a reimagining of the models of research governance, funding and processes to incorporate the time and flexibility that are essential for meaningful involved research, particularly at the precommencement stage. Only then will academic health and social science research that is truly collaborative, engaged, accessible and inclusive be commonplace. PUBLIC AND PATIENT CONTRIBUTION: This viewpoint article was written by a research network of academics with substantial experience in undertaking and researching patient and public involvement and codesign work with representatives of the public and patients right across the health system. Our work guided the focus of this viewpoint as we reflected on our experiences.