Experiences Of People Research Articles

Recent years have seen increasing pressure on primary care workforce and appointments, with 'telephone first' introduced in the UK to manage demand and workload. Patients discuss healthcare needs via telephone with a general practitioner (GP) before being invited to make an appointment.Older people are at increased risk of inequality in accessing primary care appointments, with more long-term conditions and increased communication difficulties using telephone. These inequalities were potentially exacerbated during Covid-19. This study aimed to explore experiences of older people, carers and general practice teams in using telephone first to access appointments. Qualitative study in primary care. We conducted 48 interviews with older people/carers, and six focus groups with staff from general practices using telephone first. Practices and older patients had varied approaches to 'telephone first.' As well as adapting to the concept of triage call back, challenges for older people and their practices included changing their understanding of what constituted consultations. Trust between patients and their general practice influenced views and experiences, with acceptance of telephone first being linked to their overall trust in the general practice. We observed differing views on how telephone first worked between patients and general practices reflecting poor communication between the two groups. Systems implemented into practices need to be adequately explained regarding processes, staff roles and expectations of patients, to allow for thorough understanding, and a demystification of the unknown. Future research should examine how telephone first approaches affect older patients' health outcomes.

Despite rising suicide rates in the United States, we know little about how people experience suicidality and how they access healing from suicidality. Using semistructured interviews with 102 suicide survivors-those who have seriously considered and/or attempted suicide-I ask: How do suicide survivors make sense of suicide disclosures, and what generates healing from suicidality? Using a micro-sociological Durkheimian framework, these data suggest that when suicide disclosures share two elements, narrative freedom and an empathetic audience, they facilitate social integration and thereby promote healing. Narrative freedom occurs when survivors have the agency to construct their own disclosures; an empathetic audience receives disclosures with understanding. Together, these two characteristics promote a micro-sociological social integration, which, in turn, facilitates healing from suicidality. These findings contribute to the sociology of suicide by applying Durkheim's integration at the interpersonal level and highlighting the social factors that promote healing rather than solely risk.

To investigate how young people's experiences of recognition in learning influence their wellbeing and to identify practical strategies for a more holistic and equitable educational approach that values diverse competencies beyond traditional academic measures. The project used a youth co-research and participatory design. Young people with recent experience of secondary education led the study alongside university and industry-based researchers. Data were collected between 13 May and 27 June 2024, through five participatory workshops and 10 in-depth interviews, conducted online and in person. Workshops were conducted across four contexts: two school settings (one mainstream school, one flexible learning school), one university setting (with students admitted through non-Australian Tertiary Admission Rank pathways), and one online context. 60 young people aged 15-29 years from Tasmania, Victoria, South Australia and New South Wales. Subjective and qualitative expression of knowledge and skills, wellbeing, and social connection. Young people reported that the current education system values conformity over creativity and forces them to follow prescribed pathways through learning, rather than pursue interests, curiosities and passions. This contributes considerably to poor sense of self, heightened anxiety and stress. Comparatively, when young people experience broader forms of recognition, they have greater understanding of themselves, feel safe, are engaged, can identify knowledge and skills they have acquired, have developed social connections and have a sense of subjective wellbeing. Forms of broader recognition that acknowledge non-formal learning, adopt alternative assessment and credentialing, foster supportive relationships and assert a commitment to overcoming disadvantage are essential to educational experiences that promote wellbeing. Broader recognition of learning, through non-formal learning, trusted relationships, supportive environments and learner agency, strengthens wellbeing across three dimensions: knowledge and skills, subjective wellbeing, and social connection. Redefining success in education to include recognition of broader learning - shaped by learners and their contexts - can enhance engagement, improve outcomes, disrupt disadvantage, and support more equitable systems that promote wellbeing and lifelong learning.

ABSTRACTObjectivesDementia is the leading cause of burden of disease in older Australians. Older Aboriginal and Torres Strait Islander people experience an increased risk of cognitive impairment and dementia. This article describes the clinical profile of the first patients seen at a memory clinic established in an Aboriginal community‐controlled health service (ACCHS) in metropolitan Perth, Western Australia.MethodsThis was an audit of 64 patients attending a memory clinic between March 2020 and February 2023 (inclusive).ResultsThe median age of patients was 67.7 years (range 35–95 years; interquartile range [IQR] 13.4 years) and 34 (53%) were female. The majority (94%) were living independently. Thirty‐four patients (53%; 95% confidence interval 41%–65%) were diagnosed with cognitive impairment. A further six (9%) were diagnosed with depression without cognitive impairment. The most common diagnoses in cognitively impaired patients were cognitive impairment not dementia (CIND; 27%); mild neurocognitive disorder (21%); dementia due to Alzheimer's disease (15%); Alzheimer's disease dementia, mixed type (9%); and other mixed dementias (9%). Women were slightly more likely than men to have cognitive impairment (56% vs. 52%), although this was not statistically significant (p = 0.74). The number of Aboriginal people seen in the clinic's first 3 years of operation was over 12 times that seen at a nearby hospital‐based service during the same period.ConclusionsA memory clinic located within an ACCHS was well‐attended and fulfilled a need not met by mainstream services. The successful model described in this article could be adopted by other Aboriginal health services.

Complex Regional Pain Syndrome (CRPS) in the upper limb is a rare and challenging pain condition that usually develops following an injury. No studies have identified influential aspects of healthcare specific to upper limb CRPS or the New Zealand (NZ) healthcare context. The aim of this study was to explore people's experiences of diagnosis and treatment for upper limb CRPS in NZ. An online survey was designed from themes identified in a preceding interview study. Participants were recruited from healthcare services NZ-wide, social media, and through online advertisements. Eligibility criteria were: 18 years or older, diagnosis of upper limb CRPS for more than 3 months and less than 3 years, and reporting high levels of ongoing pain and three or more CRPS symptoms over the past 48 h. Data were exported to SPSS software for descriptive analyses. Seventy-five people participated in the survey (91% female, mean age 50 years, SD 13). Nearly half of participants (43%) identified being diagnosed within 1-3 months of symptom onset. Most (81%) desired more accompanying information. Support and guidance were identified as the most valuable aspects of healthcare (72%). Participants reported difficulty accessing required treatment (60%) at the right time (61%). Nearly all participants (98%) perceived that having easy ongoing access to healthcare was important. People with upper limb CRPS prioritize early access to information and support to navigate complex systems. Updated online information about region-specific CRPS treatment options needs to be made readily available to both people with CRPS and healthcare professionals.

Understanding pregnant women's health literacy strengths and challenges: a cluster-based exploration in the Health Literacy in Pregnancy (HeLP) study.

Curved spaces are often used in shopping mall designs, as they can affect how people experience and move through a building. Research shows that curved layouts can change how we perceive space, making areas feel more enclosed or open. However, it’s still unclear how curved plans affect the visibility of shops in a mall. This study looks at how easily shoppers can see different retail stores in a curved shopping mall layout. It examines how factors like the shape of the space, shop locations, and hallway widths influence visibility. Using Space Syntax Visual Graph Analysis (VGA), the study analysed the mall layout to understand its spatial structure and functionality. The results showed that shops are more visible when hallways are wider, stores are near atriums or intersections, and the curves face outward. These insights can help designers create malls with better visibility, easier navigation, and more sustainable designs that rely less on excessive signage and lighting.

Sleep duration and its associations with depressive, anxiety, PTSD symptoms, and psychotic-like experiences in young people: a household-based epidemiological study in Hong Kong.

Peripheral intravenous catheter insertion is the most frequently performed invasive procedure in healthcare. Age-related physiological factors and chronic health conditions can influence how older people experience catheter-related complications, underscoring the need for clinical practices that address diverse needs. Although peripheral intravenous catheters are widely used in hospitalised populations, research specifically exploring their use, outcomes, and associated experiences in older people remains limited. This scoping review addresses this gap by mapping the available literature on peripheral intravenous catheter use in hospitalised older people to identify the characteristics of the existing evidence and opportunities for future research. This scoping review followed the Joanna Briggs Institute methodology and was reported to have applied the guidelines of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses-Scoping Reviews. An electronic medical database search was conducted including MEDLINE (Web of Science), CINAHL Complete (EbscoHost), PubMed (NCBI), Scopus (Elsevier), Emcare (Ovid) and the Cochrane Central Register of Controlled Trials. A systematic grey literature search was also undertaken. The review was limited to publications since the year 2000. Thirty sources from 12 different countries were included. The evidence types consisted of observational studies (n = 15), experimental studies (n = 2), education summaries (n = 7), clinical practice guidelines (n = 2), a scoping review (n = 1), a bibliographic review of guidelines (n = 1), a book chapter (n = 1) and a letter to the editor (n = 1). Most studies were observational with small sample sizes. The review identified key topics relating to older people including peripheral intravenous catheter insertion, complications, clinician practices, physiological ageing and patient experiences. Pain and satisfaction were the only two experience measures identified. Definitions of 'older people' varied, and no qualitative evidence related to experiences specific to this population was identified. Although a range of evidence types exists, substantial knowledge gaps remain. The literature is dominated by small observational studies, underscoring the need for robust experimental research. The absence of qualitative studies highlights a critical gap in understanding patient experience. Future research should employ both high-quality quantitative and qualitative methodologies to support the development of patient-centred, evidence-based peripheral intravenous catheter practices for hospitalised older people.

Background/Objectives: Pancreatic cancer remains highly fatal, often diagnosed late with poor prognoses and worse psychological quality of life compared to other cancers. Globally, it is the twelfth most common cancer but the sixth leading cause of cancer-related deaths, with actual 5-year survival rates below 5%. Northern Ireland’s outcomes are among the worst, yet research on people’s experiences across the illness trajectory is scarce. Consequently, the unique needs of people with pancreatic cancer are poorly understood. It is crucial we develop deeper understanding of the entire pancreatic cancer journey to address this. This study aims to explore the lived experiences of people diagnosed with pancreatic cancer in Northern Ireland and generate a theory that explains their journeys, from pre-diagnosis through to survivorship or end of life. Methods: This study will adopt a grounded theory approach, incorporating multiple qualitative data generation methods: semi-structured interviews with patients and care partners, and focus groups with professionals. An optional photovoice (participatory photography) method will be offered to participants. Theoretical sampling principles and constant comparative analysis will guide recruitment, data collection, and analysis to ensure the explanatory theory is rooted in participants’ lived experiences. Conclusions: Establishing a holistic, in-depth understanding of people’s pancreatic cancer journeys will enable us to better comprehend, anticipate, and meet their needs. A theory grounded in empirical data about lived experiences can inform priorities for future care, support services, policy, and research, and contribute to the development of support interventions that help people to maintain the best possible quality of life, whether during a short-term, terminal illness; treatment journey; long-term symptom management; or survivorship.

Neighborhood experience and hoarding disorder.

IntroductionThe treatment of infertile people is generally time-consuming and requires frequent and long-term visits and providing dignity-based services. Due to the different perceptions and experiences of people and the lack of a specific study to explain the concept of dignity-based care, this study aimed to explain the concept and dimensions of dignity-based care in infertility treatment services.MethodsThis was a qualitative study with a conventional content analysis approach. Fifty participants (20 infertile women, 16 infertile men, and 14 key informants) were recruited using a purposive sampling method from an educational center of Mazandaran University of Medical Sciences and a private infertility center in Mazandaran –Iran in 2023. Sampling was continued until data saturation. Data were collected using in-depth and semi-structured individual interviews. The data were also analyzed using the conventional content analysis method and the steps suggested by Grandheim and Lundman. Also, Lincoln and Guba’s criteria were used to check the trustworthiness of the data.ResultsThe content analysis demonstrated 43 codes in 11 sub-categories and 4 categories. These categories are “conserving dignity in providing care”, “making the information accessible and obtaining informed consent for care procedure”, “providing professional care and standard services”, and considering cultural and social aspects of infertility. The categories were used to explain the concept and dimensions of dignity-based care in infertility treatment services which are showing the multidimensional aspects of this concept.ConclusionDignity-based care in infertility treatment services means “conserving dignity in providing care services; making the information accessible and obtaining informed consent for care procedure; providing professional care and standard services; and considering cultural and social aspects of infertility.” This concept can be used in future policy-making and planning, and appropriate support should be taken into account to improve the quality of infertility treatment services.

With growing numbers of adults seeking and receiving autism diagnoses, understanding subjective experiences of this process is crucial for sensitive policy and practice. The route to diagnosis can be long and circuitous, yet most evidence on adults' experiences of diagnosis relies on retrospective reports collected at a single point in time. The current study explores lived experiences of the diagnostic journey through serial qualitative interviews conducted in the weeks before and after adults' autism diagnosis. Fourteen adults participated in online interviews over videoconferencing or email. Thematic analysis of the data suggested the diagnostic process could be characterised according to three themes. Journey to Self-Discovery identified the pursuit of diagnosis as rooted in a drive for self-understanding, propelled by anticipated benefits that were partially realised, and emotionally complex at all stages. Challenges with Navigating the Diagnostic Process highlighted how the process of acquiring and adjusting to a diagnosis was shaped by issues of resource access, system deficiencies, social inequalities and cognitive overwhelm. Isolation to Advocacy revealed how journeys that began in independent self-initiative evolved over time into community participation and advocacy. Providing original evidence of how lived experiences of adult autism diagnosis evolve across time, the current study offers valuable context for adults pursuing assessment, professionals performing assessments and policy-makers designing adult autism services.Lay abstractIncreasing numbers of people are receiving autism diagnoses in adulthood. Understanding their firsthand experience of diagnosis is crucial for improving supports for adults undergoing autism assessment. This study conducted interviews with adults at two time-points: one interview during the six weeks before their assessment, and a second interview within six weeks after their assessment. Fourteen people volunteered to participate in the study through videocall or email. The interview transcripts were analysed using a process called thematic analysis, with specialist software used to find patterns across people's experiences. The analysis suggested that adults appreciated the role of diagnosis in helping develop a better understanding of themselves. Nevertheless, people had mixed emotions both leading up to the assessment and after their autism diagnosis. Adults experienced many challenges in arranging and undergoing the autism assessment. However, the process of getting a diagnosis helped many to move from feeling isolated to feeling part of a wider community. These findings will be useful to adults at different stages of the diagnosis process, and for professionals and policy-makers developing adult autism services.

BackgroundJustice-impacted persons aged 40 and up with substance use disorders (SUD) demonstrate increased health risks and health disparities relative to general population peers. Persons with SUD are less likely to age out of criminal behavior, appearing on criminal dockets, in jails, prisons, and under community supervision throughout the life course, with greater community-level cost burdens as they age. Justice system involvement presents health risks that compound with SUD to undermine well-being, which is amplified as people age and experience age-related health decline. Propensity for premature mortality from overdose is startlingly high for this population, highlighting demand for targeted policies to better meet the needs of this vulnerable group. To better understand justice-impacted older adults in treatment for SUD and inform policy, we examined opioid use outcomes among 357 low-income justice-impacted adults in SUD treatment in the Midwest, USA, including a natural oversampling of Black and American Indian or Alaska Native (AIAN) persons. We explored patterns among persons in their 40s, 50s, and 60s, relative to those under 40, conceptualizing life-course risk factors and using logistic regression to assess overdose, opioid use, and opioid agonist medication use.ResultsSignificant differences in opioid use by age were observed, with older persons less likely to report opioid prescription misuse or illicit opioid use. Differences were not significant once controlling for user preferences, race/ethnicity, gender, family, childhood, and life course experiences. Overdose history was also significantly less likely for the 40 and older SUD patient, though this was no longer significant when controlling for demographic covariates. Opioid agonist medication use did not significantly differ by age.ConclusionsJustice-involved patients aged 40 and up in SUD treatment were less likely to have experienced overdose or report opioid use, relative to their younger peers, but this variation dissipated when considering demographic, family and/or life course factors. Targeted treatment services for gender and racial minorities may be beneficial for patients 40 and up. We identify preference for one substance, versus two, as protective against overdose and opioid use among older persons who use drugs.

ABSTRACT This study examines how individuals with long COVID navigate illness experiences when faced with normal test results. Through qualitative analysis of 1,043 posts from r/covidlonghaulers between July 2020 and January 2021, we identified four key themes: overlapping diagnostic possibilities increase confusion, discordance in treatment plans, sustained uncertainty, and challenges to credibility. Our findings reveal how polysemic meanings of normal become sites of tension between biomedical evidence and lived experiences, creating a communicative burden for patients who must advocate for legitimacy and care. The analysis demonstrates how overlapping symptomology with other conditions complicates diagnosis, while patients develop strategies to navigate dismissive healthcare encounters and establish credibility when symptoms persist despite normal results. Reddit served as a vital platform for patients to exchange communication strategies for healthcare encounters and find validation when test results invalidated their experiences. A strength of this study is its ability to capture the experience of people with long COVID at the community’s inception through a platform that connected them despite geographical barriers. Our findings provide valuable insights into how patients navigate contested illness experiences and offer concrete pathways for enhancing patient-provider communication around medically unexplained symptoms across various diagnoses.

BackgroundThe experiences of patients and healthcare providers are fundamental in understanding the patient journey, particularly in the context of neglected diseases affecting rural populations. These insights are crucially important for advancing people-centred, high-quality healthcare and achieving improved health outcomes. Cutaneous leishmaniasis (CL) causes chronic, disfiguring skin lesions leading to a significant burden on the affected communities and the health systems. Our study aims to examine the experiences of people with CL after entering the biomedical healthcare system. We also integrate these findings with our previous work to map the entire CL patient journey in a disease-endemic district in Sri Lanka.MethodsWe conducted a qualitative study in three rural communities with high disease prevalence in the Anuradhapura district, Sri Lanka. We collected data through (1) a participant experience reflection journal (PERJ), (2) post-PERJ interviews and (3) an interview study with healthcare professionals. We analysed data through thematic analysis.ResultsThirty PERJs were completed by individuals with CL, with 25 participating in post-PERJ interviews and 16 healthcare professionals participated in the key informant interviews. Upon entering a biomedical healthcare facility, a person with CL navigated through the stages of clinical suspicion and laboratory diagnosis, receiving treatment and achieving a cure (as clinically confirmed by the treating dermatologist). Although many physicians accurately suspected cases upon initial presentation, some failed to clinically diagnose CL promptly. Some patients experienced prolonged waiting times for their initial consultations with the dermatologist and to receive diagnostic test results. Accessibility issues, travel and meal costs, and competing responsibilities like household work, education, and employment further added to the burden of attending frequent clinic visits for CL. Despite the long and painful nature of the treatment, compliance among people with CL remained satisfactory, with rare reports of treatment failure. For some people, the CL patient journey extends beyond the clinically defined cure, as they continue to live with constant fears, perceived physical impacts associated with the disease, and effects of treatment.ConclusionsWe found that, despite certain positive aspects, the CL patient journey is complex, with substantial and pervasive delays and barriers along with psychosocial impacts that persist beyond clinical cure. Our study findings can inform evidence-based, context-specific interventions to reduce the public health burden of CL in resource-limited settings.Supplementary InformationThe online version contains supplementary material available at 10.1186/s12879-025-11962-8.

BackgroundYoung people with Type 1 diabetes in Saudi Arabia transition from paediatric to adult care at a culturally defined age of 14, which is younger than the average transition age in Western societies. The aim of this study was to elicit the experiences of young people with Type 1 diabetes, their parents, and healthcare providers in Saudi Arabia as they transitioned from paediatric to adult care.MethodsIn healthcare, Design Thinking is a human-centred approach that draws on participants’ experiences and perspectives to design and develop interventions, models, or services that meet the needs of stakeholders. This study reports the first inspiration phase of the Design Thinking process. Four parallel exploration workshops were held with pre- and post-transition young people with Type 1 diabetes (n = 12), their parents (n = 8), and healthcare providers (n = 7).FindingsSix key themes were identified from the workshops’ data analysis. For young people, the key themes were facing the unknown and preparedness; developing autonomy and recognition as an independent person; and interacting with the adult healthcare team. For parents, the themes were navigating the shift in parental role and involvement in care, interacting with healthcare professionals, and changing support needs. For healthcare providers, the key theme was balancing independence and care approaches.ConclusionThe Inspiration phase of the Design Thinking approach provided valuable insights from the healthcare transition experiences of young people with Type 1 diabetes, their parents, and healthcare providers in Saudi Arabia. The generated insights facilitated the identification of areas for interventions in the process’s following phases.

Abstract The human sensory systems are a primary means through which people experience and connect with nature. Understanding and improving people's personalised ecologies—their embodied, sensory interactions with other organisms—is key to addressing the causes and consequences of the extinction of experience and ecological grief prevalent in industrialised society. Despite this importance, to date there has been little quantitative research into how varying sensory capabilities may result in people having very different personalised ecologies. In this paper, we investigate how human–nature interactions can vary for people with different hearing acuities. We combine data on age‐related hearing loss with frequency‐amplitude profiles of birdsong for ten bird species in the United Kingdom, to estimate how the ability to hear bird vocalisations at a given distance may change with age. Our results suggest that the ability to perceive birdsong, and the distances at which songs can be heard, are likely to decrease dramatically for older listeners, with perceptual differences being more pronounced for birds which sing at higher frequencies. Moreover, with age‐related hearing loss, birdsong may lose its perceived richness, become apparently more similar between species, and be less distinguishable from other sounds, particularly for higher frequency vocalisations. These findings have significant implications for personalised ecologies and citizen science. We advocate for greater attention to the primacy of sensory perception in human–nature interactions, and an awareness of how variation in sensory capabilities may result in people experiencing nature very differently. Read the free Plain Language Summary for this article on the Journal blog.

The value of people's unique lived experience of mental illness (including psychosis), professional treatment and recovery as a valid form of knowledge remains relatively unexplored and under-utilised by mental health professionals, policy makers and by those seeking help. Mutual peer support remains a largely untapped resource, often ignored and distanced from mainstream services. In this reflective perspective article, I share my own experiences as a service user, spouse, close relative and brother-in-law and also as someone who worked for many years in mutual peer support and in the area of recovery. I reflect on the findings of my doctoral narrative research which focused on the role played by Grow Mental Health, Ireland's largest network of mutual peer support groups, in recovery from a wide range of diagnoses. The main finding from this research suggested that recovery can be experienced as a re-enchantment with life and that mental illness can act as a gateway to mental health rather than be experienced as a form of (often life-long) disability. In the discussion I try and envisage what a recovery oriented mental health system might look like, and what changes would need to be introduced. Despite such a long personal history of dealing with mental illness and witnessing many different levels of recovery, I still have much to learn about mental illness and recovery. I also welcome many recent changes made within the system and indeed this special edition of the journal.

ABSTRACTBackgroundOften people experience ongoing health challenges after stroke. The Australian Stroke Clinical Registry collects patient‐reported outcomes after stroke. Many patients report challenges that are potentially addressable through additional support.AimsTo co‐design a registry‐based, hospital‐initiated, follow‐up service for people who report major health‐related challenges between 90 and 180 days after their stroke.MethodsIterative, consensus‐based methods were used to co‐design a follow‐up service intervention including eligibility criteria, clinical protocol (consultation/communication forms and pathways) and implementation requirements (e.g., training manual) (May 2022–March 2023). Stakeholders, including Australian‐based clinicians providing stroke care, researchers and people with lived experience of stroke, were involved in each stage. Data collection: Stage 1 (development), (i) scoping survey; (ii) two consensus meetings; (iii) interviews with key informants (n = 3); (iv) online modified Delphi survey; Stage 2 (testing and finalisation), (v) piloting of the follow‐up service intervention at one hospital, with service coordinator/study team interview and participant satisfaction surveys and; (vi) final review (modified Delphi survey). Consensus was defined in the modified Delphi surveys as ≥ 80% ‘agreement’ or verbal consensus via open voting during meetings. Additional recommendations from each step were iteratively incorporated to refine the intervention.ResultsScoping survey results (n = 41/108 respondents, 38% response rate) highlighted the need for broad inclusion criteria and the involvement of carers/support person and general practitioners. During the consensus meetings (16/18, 89% stakeholders attended at least one), verbal consensus was achieved for the eligibility criteria, and additional recommendations were made for the referral report and components within the clinical protocol and training manual. After the final Stage 1 modified Delphi survey (n = 10, two cohorts), 70%–100% consensus was achieved for the referral report, clinical protocol components and training manual, which were then piloted with six eligible participants. Feedback from the pilot testing (n = 3 coordinator/staff interviews; n = 5 satisfaction surveys) led to further clinical protocol modifications. Agreement was reached for all additional recommendations during the final modified Delphi survey round (16/29 respondents, 55%).ConclusionWe describe an iterative, consensus‐based co‐design process which resulted in a novel, registry‐based follow‐up service intervention for people living with stroke reporting major health challenges. A feasibility randomised controlled trial is the next stage.Patient or Public ContributionPeople with lived experience of stroke, including their family/caregivers, actively participated throughout the co‐design process to develop and test the follow‐up service intervention. There was lived experience representation with scoping survey responses, as well as within the working group and independent review group who were involved with the consensus meetings and modified Delphi process. Survey feedback from people with stroke who piloted the developed service intervention was also integral to informing the final service intervention.