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Background: The role of patient participation and representation during crises, such as the COVID‐19 pandemic, has been under‐researched. Existing studies paint a pessimistic picture of patient representation during the pandemic. However, there are indications that patient representatives have adapted to the new situation and can contribute to the resilience of healthcare systems. This paper aims to further explore the potential contribution of patient representatives for healthcare system resilience during the COVID‐19 pandemic. Methods: The study used a qualitative approach. We conducted a thematic analysis on the following data: interviews with client council members (n = 32) and representatives from patient organizations (n = 6) and focus groups (n = 2) to investigate patient representation on both the national policy level and organizational level in the Netherlands. Results: We identified the crisis discourse, the dependent position, the diversity of patient perspectives and the layered decision‐making structure as themes that help to understand what made patient representation in pandemic times a struggle for national and local patient representatives. The analysis of the subjects these representatives put forward during decision‐making shows that their input can play an important role in broadening discussions, challenging decisions, and suggesting alternatives during a crisis. We identified several strategies (e.g., collaborating with other actors, proactively putting subjects on the policy agenda, finding new ways of contacting their 'constituency') used by the patient representatives studied to exert influence despite the difficulties encountered. Conclusions: The struggle for patient representation during pandemic decision‐making is a missed opportunity for resilient healthcare systems as these representatives can play a role in opening up discussions and putting different perspectives to the fore. Moreover, the adaptive strategies used by representatives to influence decision‐making offer lessons for future representation activities. However, adaptations to the crisis decision‐making structure are also needed to enable patient representatives to play their role. Patient Contribution: We conducted interviews with patient representatives and discussed our preliminary findings with patient representatives during the focus groups. Zorgbelang, a patient organization supporting client councils and enabling and organizing patient participation for organizations and municipalities, was partner in this research and contributed to the interview guide, conducting interviews and focus groups. Additionally, the analysis made by the first author was discussed and refined multiple times with the partners of Zorgbelang and one of them co‐authored this paper. [ABSTRACT FROM AUTHOR]

Background: For adults with inflammatory bowel disease (IBD), they experience many challenges in dietary decision‐making. Thus, this study examined the perspective and experiences of adults with IBD in dietary decision‐making. Objective: This study aimed to explore the perception and consideration of people with IBD in their daily dietary decisions through monitoring, interpretation and action during the decision‐making process. Design: A qualitative study of individuals affected by IBD was conducted through semistructured interviews. Results: Twenty patients were recruited from four tertiary hospitals in Nanjing, China, and each participant completed a semistructured interview. The majority of participants reported on the process and experience of dietary decision‐making. Key themes were categorised into three stages: (1) assessing needs, preferences and food cues (monitor); (2) moving from experience to expertise (interpret) and (3) balancing expectations amidst limitations (act). The majority of participants reported that their decisions were shaped by assessing current disease status and food cues. Those interviewed with IBD were willing to make tradeoffs for bowel stability, but their decisions were also influenced by past dietary experiences and traditional Chinese beliefs. The lack of awareness of dietary guidelines was a significant barrier to healthy eating decisions. Positive or negative feelings accompanied dietary decisions. Conclusion: Although most people with IBD change their diet after diagnosis, the changes made are often inconsistent with existing dietary recommendations. Several factors can influence the dietary decision‐making process. This study will help assess the experiences of people with IBD in dietary decision‐making to encourage the formation of targeted dietary health and well‐being interventions. Knowledge of nutrition and diet should be provided in education and training programmes for IBD management. Patient or Public Contribution: The first three authors of this paper were the lead researchers in this study's design. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process was co‐lead and directed by other patient participants and consultants. The results of this paper were directly obtained from patient participants. [ABSTRACT FROM AUTHOR]

In 2020 it is estimated that 281 million people were international migrants. Migrants constitute a potentially vulnerable population in terms of facing discrimination, poor living and housing conditions, and insufficient access to healthcare services. Due to the armed conflict in Ukraine in 2022, almost 10 million people crossed the Polish border within a year of the outbreak of the conflict. The objective of this paper is to present the use of primary healthcare services by people migrating from Ukraine to Poland and identify the barriers in access to healthcare by this group of persons. This study used a qualitative research technique in the form of an expert interview using individual in-depth interviews (IDI). The study group consisted of professionally active primary healthcare providers (doctors, nurses, and facility managers) in Poland. Research was carried out in the areas regarding the availability of healthcare, the potential threats and challenges, and possible system solutions. The results showed that the most common cause for doctor's appointments among migrants are respiratory infections, including COVID-19. Many cases were related to back pain, mainly resulting from the physical work of the patients. Additionally, some barriers to access and the provision of healthcare services for patients from Ukraine were identified. The majority (75%) of respondents indicated language as a significant barrier when providing services. Based on the study results, we recommend creating a dedicated website and telephone hotline for this group of persons as well as the use of traditional media to distribute information about access to healthcare services. It is also essential to focus on assistance for older people, since they may experience more difficulties with language and navigating the healthcare system. [ABSTRACT FROM AUTHOR]

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Background: People with Parkinson's disease (PD) do not always access specialist outpatient services in a timely manner in Ireland. The perspectives of people living with PD, relating to service access, are largely absent in the existing literature. Aim: To explore experiences of PD service access for people living with PD, using a qualitative approach. Methods: Purposive maximum variation sampling was used. Semi‐structured telephone interviews were conducted with 25 service users, including people with PD (n = 22) and supporting carers (n = 3). Informed consent was obtained from all participants. Interviews ranged in duration from 30 to 90 min. Data were managed in NVivo 12 and interpreted inductively using thematic analysis. The researchers were reflexive throughout the research process. The Consolidated Criteria for Reporting Qualitative Research checklist was employed to maximise transparency. Results: The findings highlight several key barriers to and facilitators of equitable and timely service access. Three key themes were identified comprising experiences of PD service access including 'geographical inequity', 'discriminatory practices', and 'public and private system deficits'. Together, these themes illustrate how a two‐tiered and under‐resourced health system lacks capacity, in terms of infrastructure and workforce, to meet PD needs for both public and private patients in Ireland. Conclusions: These findings point to problems for PD care, relating to (i) how the health system is structured, (ii) the under‐provision and under‐resourcing of specialist outpatient PD services, including medical, nursing, and multidisciplinary posts, and (iii) insufficient PD awareness education and training across health settings. The findings also show that telemedicine can provide opportunities for making access to certain aspects of PD care more flexible and equitable, but the feasibility and acceptability of technology‐enabled care must be assessed on an individual basis. Implications for policy, practice and research are discussed. Patient or Public Contribution: The design and conduct of this study were supported by an expert advisory group (EAG) of 10 co‐researchers living with PD. The EAG reviewed the interview schedule and the protocol for this study and provided detailed feedback from their perspective, to improve the methods, including the interview approach. The group also reviewed the findings of the study and contributed their insights on the meaning of the findings, which fed into this paper. [ABSTRACT FROM AUTHOR]

Introduction: Maternal glycemia is associated with pregnancy outcomes. Thus, supporting the self-management experiences and preferences of pregnant women with type 1 and type 2 diabetes is crucial to optimize glucose control and perinatal outcomes. Research design and methods: This paper describes the mixed methods integration of a sequential comparative case study. The objectives are threefold, as we integrated the quantitative and qualitative data within the overall mixed methods design: (1) to determine the predictors of glycemic control during pregnancy; (2) to understand the experience and diabetes self-management support needs during pregnancy among women with pre-existing diabetes; (3) to assess how self-management and support experiences helpe to explain glycemic control among women with pre-existing diabetes in pregnancy. The purpose of the mixing was to integrate the quantitative and qualitative data to develop rich descriptive cases of how diabetes self-management and support experiences and preferences in women with type 1 and type 2 diabetes during pregnancy help explain glucose control. A narrative approach was used to weave together the statistics and themes and the quantitative results were integrated visually alongside the qualitative themes to display the data integration. Results: The quantitative results found that women achieved "at target" glucose control (mean A1C of the cohort by the third visit: 6.36% [95% Confidence Interval 6.11%, 6.60%]). The qualitative findings revealed that feelings of fear resulted in an isolating and mentally exhausting pregnancy. The quantitative data also indicated that women reported high levels of self-efficacy that increased throughout pregnancy. Qualitative data revealed that women who had worked hard to optimize glycemia during pregnancy were confident in their self-management. However, they lacked support from their healthcare team, particularly around self-management of diabetes during labour and delivery. Conclusions: The achievement of optimal glycemia during pregnancy was motivated by fear of pregnancy complications and came at a cost to women's mental health. Mental health support, allowing women autonomy, and the provision of peer support may improve the experience of diabetes self-management during pregnancy. Future work should focus on developing, evaluating and implementing interventions that support these preferences. [ABSTRACT FROM AUTHOR]

Background: Kidney disease is a progressive, debilitating condition. Patients experience challenging physical and psychological symptoms and are at increased risk of anxiety, depression, and poor mental wellbeing. Access to specialist psychological or social support is limited, with inadequate provision of psychosocial support available across UK renal units. The COSMIC study (examining the acceptability and feasibility of the Compassionate Mindful Resilience programme for adult patients with chronic kidney disease) aimed to support a new service development project, in partnership with Kidney Care UK, by implementing the Compassionate Mindful Resilience (CMR) programme, developed by MindfulnessUK, and explore its feasibility for patients with stage 4 or 5 kidney disease and kidney transplant recipients. This paper reports on the qualitative exploratory work which examined the experiences of study participants, their adherence to practice, and the acceptability of the intervention. Method: Participants (n = 19) took part in semi-structured interviews, which were transcribed, coded, and thematically analysed. Results: Three themes (and nine subthemes) were reported: experiences of the CMR programme that facilitated subjective benefit, participants' lived and shared experiences, and the practicalities of CMR programme participation. All participants reported that they found taking part in the CMR programme to be a beneficial experience. Conclusion: The CMR programme was found to be an acceptable intervention for people living with kidney disease and provided tools and techniques that support the mental health and wellbeing of this patient group. Further qualitative exploration into participant experience should be integrated within future trials of this intervention. [ABSTRACT FROM AUTHOR]

Introduction: Rehabilitation practices that adopt a strengths-based perspective are known as transdisciplinary evidence-based practices. However, little is known about whether and how such a perspective is experienced by people living with a neurological condition during their rehabilitation. Objective: To explore how core components of a strengths-based rehabilitation perspective (i.e., hope, self-determination, and mobilization of personal strengths) are envisioned and experienced in outpatient-based rehabilitation by adults living with multiple sclerosis or spinal cord injury. Methods: A descriptive exploratory study with mixed data collection was conducted with adults living with spinal cord injury (n = 9) or multiple sclerosis (n = 11). Participants completed two semi-structured interviews and the Recovery Promoting Relationship Scale (RPRS). The qualitative analysis relied on a hybrid inductive and deductive approach. Results: Four themes depict a strengths-based rehabilitation perspective: (1) The mobilization of personal strengths (e.g., what a strengths-based perspective could offer); (2) hope (e.g., what hinders hope in rehabilitation); (3) accessing information for decision-making (e.g., navigating the system); and (4) exercising self-determination (e.g., influencing the length or intensity of rehabilitation services). Conclusions: Hope, self-determination, and the mobilization of personal strengths are of the utmost importance throughout the rehabilitation of adults living with multiple sclerosis and or spinal cord injury. This paper raises awareness about elements specific to the contexts in which services are offered or to the therapeutic relationships influencing how these three strength-based constructs are envisioned and experienced in rehabilitation. [ABSTRACT FROM AUTHOR]

Background: The use of patient-reported outcome measures (PROM) and patient-reported experience measures (PREM) provide health providers with valuable feedback on how to improve clinical care and patient outcomes. This paper describes a qualitative study that was conducted to learn about factors influencing the well-being of people living with HIV (PLHIV) in Finland. The findings will be used to develop themes for HIV-specific PROM and PREM questions. Methods: PROMs and PREMs were developed by the Finnish Institute for Health (THL) as a part of a project to develop a national quality-of-care registry for HIV. The study aimed to identify issues and concerns among people living with HIV (PLHIV) that influence their well-being (PROMs) and their experiences in the healthcare system (PREMs). The data were collected through face-to-face in-depth interviews and focus group discussions based on open-ended and semi-structured questions. The data were analyzed using thematic analysis. Results: The assessment identified the following PROMs of concern: psychological well-being, concerns about stigma, physical health, social well-being, sexual well-being, medication uptake, managing other medications with antiretrovirals (ARVs), and growing old. The assessment identified the following PREMs: helping patients understand their own health status, proving an opportunity for patients to discuss physical health, psychological and sexual well-being, supporting the uptake of ARVs, assisting patients with medication use, showing compassion towards patients, and empowering patients against stigma. Conclusion: These findings of the study can be used to develop domain-specific PROM and PREM questions for the national HIV quality care register. [ABSTRACT FROM AUTHOR]

Introduction: No one can argue on the importance of health in one's life. However, the value of health in the context of other priorities for individuals is not always as clear. Further, patients' experience with the healthcare system is rarely contrasted with the service providers' expectations. The aim of this paper is to examine and compare patients' and providers' own definitions of health and their perceptions of the healthcare delivery experience from the lens of residents and providers in West Baltimore, Maryland. Methods: This was a qualitative study with semi‐structured focus groups (15 sessions) and individual in‐depth interviews (21 interviews) with 94 participants. Two independent coders thematically analysed the transcripts. Results: Patients identified five areas where health systems can help them stay healthy or become healthier: affordability and costs of care; accessibility; clinician/patient communication; addressing social determinants; and stigma and trust. Providers acknowledged that the healthcare experience is not always perfect. While the medical team focuses on conversations that enhance medical care, patients are expecting providers to touch on subjects beyond medical care. Conclusions: Patients and providers need to consider that although they have a common value towards health, there is still a gap in what users expect and what providers can offer. To further align those expectations, there is a need for increasing involvement of patient in care administration and improving dialogue between the parties about these differences. Patient or Public Contribution: A Stakeholder Advisory Board (SAB)—comprised of a patient, two community leaders, a physician and two healthcare administrators—was instrumental in codeveloping the study material (e.g., interview guides), engaging patients in the research process, identifying participants and codeveloping dissemination material. Two SAB members—Gail Graham, a patient consultant/professor, and Marcia Cort, a physician—are coauthors. [ABSTRACT FROM AUTHOR]

Background: To guide the development of high‐quality care for people with multiple chronic conditions, partners of the European Joint Action CHRODIS developed the Integrated Multimorbidity Care Model. To assess its suitability for improving care for people with multimorbidity in the Netherlands, the model was piloted in a primary care setting with both patients and care providers. Aim: This paper reports on the patient perspective, and aims to explore the priorities, underlying values and preferences for care of people with multimorbidity. Participants and methods: Twenty persons with multimorbidity (selected from general practice registries) participated in a focus group or telephone interview. Subsequently, a questionnaire was completed by 863 persons with multimorbidity registered with 14 general practices. Qualitative data were thematically analysed and quantitative data by means of descriptive statistics. Results: Frequently prioritized elements of care were the use of shared electronic health records, regular comprehensive assessments, self‐management support and shared decision making, and care coordination. Preferences for how these elements should be specifically addressed differed according to individual values (eg weighing safety against privacy) and needs (eg ways of coping with multimorbidity). Conclusion: The JA‐CHRODIS Integrated Multimorbidity Care Model reflects the priorities and preferences for care of people with multimorbidity in the Netherlands, which supports its relevance to guide the development of person‐centred integrated care for people with multiple chronic conditions in the Netherlands. Patient contribution: European patient experts contributed to the development and applicability assessment of the JA‐CHRODIS Integrated Multimorbidity Care Model; Dutch patients participated in focus groups, interviews and a survey. [ABSTRACT FROM AUTHOR]

Background: Patient‐reported Experience (PRE) is an emerging concept integrating patient perspectives and amplifying voices often marginalized in discussions surrounding health systems. However, it remains a challenge to use and integrate PREs when studying patient agency and access to quality services, particularly with data from multiple sources. In this article, using study materials from the Swiss MIWOCA project, we present and reflect upon a multistage PRE approach to study healthcare access. Methods: The MIWOCA project, a study on healthcare access and quality among immigrant women with chronic illnesses living in Switzerland, provided data from multiple sources for the integration of PRE data. These sources included interviews with women (n = 48), two focus group discussions with women (n = 15), interviews with service providers (n = 12) and observations from stakeholder dialogues (n = 3). In addition, we utilized field notes, focus group illustration maps, patient vignettes and policy briefs to develop a multistage data linking model. PRE data served as starting themes and reference topics in each of the interlinked stages of knowledge production. Results: Deploying PREs, we coherently linked the data from preceding stages and used them to inform subsequent stages. This, in turn, enabled us to identify, reflect and rectify factors limiting immigrant women's agency and access to quality services. Ultimately, the approach engaged patients as knowledge co‐producers for system‐level changes. This knowledge was transformed into a set of practice recommendations and a policy brief addressing ways to improve health systems to better serve immigrant women in Switzerland. Conclusions: Building on PREs to systematically combine multiple data sources and engage patients continuously can improve our understanding of barriers in health systems. Beyond individual patient‐doctor encounters, a multistage PRE approach can identify structural problems and provide clues for resolving them at the systems level. The PREs approach presented may serve as an example and encourage more public health experts to consider PREs in future research and practice. Patient and Public Contribution: Women with chronic illness and immigration experience contributed to interview‐guideline development, provided PREs in interviews, identified priority areas for health‐service change and actively participated in the development of practice recommendations. [ABSTRACT FROM AUTHOR]

Background The COVID-19 pandemic has underscored the importance of remote healthcare and home-based interventions, including pulmonary rehabilitation, for patients with chronic respiratory diseases (CRDs). It has also heightened the vulnerability of individuals with underlying respiratory conditions to severe illness from COVID-19, necessitating exploration and assessment of the feasibility of delivering home - pulmonary rehabilitation (home-PR) programmes for CRD management in Malaysia and other countries. Home-based programmes offer a safer alternative to in-person rehabilitation during outbreaks like COVID-19 and can serve as a valuable resource for patients who may be hesitant to visit healthcare facilities during such times. We aimed to assess the feasibility of delivering a home-PR programme for patients with CRDs in Malaysia. Methods We recruited patients with CRDs from two hospitals in Klang Valley, Malaysia to a home-PR programme. Following centre-based assessment, patients performed the exercises at home (five sessions/week for eight weeks (total 40 sessions)). We monitored the patients via weekly telephone calls and asked about adherence to the programme. We measured functional exercise capacity (6-Minutes Walking Test (6MWT) and Health-Related Quality-of-Life (HRQoL) (COPD Assessment Test (CAT)) at baseline and post-PR at nine weeks. We conducted semi-structured interviews with 12 purposively sampled participants to explore views and feedback on the home-PR programme. The interviews were audio recorded, transcribed verbatim, and analysed thematically. Results We included 30 participants; two withdrew due to hospitalisation. Although 28 (93%) adhered to the full programme, only 11 (37%) attended the post-PR assessment because COVID-19 movement restrictions in Malaysia at that time prevented attendance at the centre. Four themes emerged from the qualitative analysis: involvement of family and caregivers, barriers to home-PR programme, interactions with peers and health care professionals, and programme enhancement. Conclusion Despite the COVID-19 pandemic, the home-PR programme proved feasible for remote delivery, although centre-based post-PR assessments were not possible. Family involvement played an important role in the home-PR programme. The delivery of this programme can be further improved to maximise the benefit for patients. [ABSTRACT FROM AUTHOR]

Introduction/Objective: The objective of the study was to develop an understanding of the perceptions of people with Parkinson's disease and clinical academics on the implementation of a regional interdisciplinary model of care. Methods: A qualitative descriptive study was undertaken. A PD interdisciplinary clinic was conducted in an Australian regional location. As a novel variation, in this clinic, 4 clinical academics consulted simultaneously offering a long, 3-h appointment. Following the clinic, we conducted 2 focus groups with all clinical academics and 6 semi-structured interviews with people with PD and carers. Data were analyzed using Elo & Kyngäs' inductive content analysis approach. Results: An overarching main category namely, "interdisciplinary care proved valuable to regional people with PD and clinical academics," and 3 generic-categories including "identifying interdisciplinary care as a viable option in regional locations," "current care provision is disempowering and burdensome," and "regional residing people with PD and their carers seek locally accessible healthcare with PD skilled clinicians" were identified. Conclusion: Our findings suggest the implementation of interdisciplinary care to regional healthcare systems is valued by clinical academics and people with PD and carers. Further research is required to establish how interdisciplinary care can be implemented in regional Australia and its effects on practice changes, patient outcomes, and quality of life. [ABSTRACT FROM AUTHOR]

Patients living with multiple myeloma (MM) have a substantial disease burden and face multiple barriers to care. Building upon our previous research using mixed methods, this focus group research aimed to identify patients' priorities regarding specific social and identity-related needs, map these prioritized needs to the disease journey, and describe patient-generated ideas to improve patient support. Participants noted that patients with MM need a range of emotional, social, and financial support throughout the disease journey. They identified initial MM diagnosis and treatment adherence as two critical points in the MM journey where patients need the most support and assistance. The findings of this research suggest that overall, patients with MM need comprehensive support, ideally from a multidisciplinary team consisting of health care providers, patient advocates, social workers, and psychologists to help patients understand their disease and treatment options, make informed treatment decisions, adhere to treatment, and ultimately reduce their disease burden and improve outcomes. This research revealed that patients with MM need varying types and levels of support, with the most common needs including information on disease and treatment, connections to financial resources and support systems, assistance with navigating insurance options, and transportation and logistical support for medical appointments. [ABSTRACT FROM AUTHOR]

Background: Obesity (body mass index ≥ 30 kg/m2) is a major risk factor for heart failure with preserved ejection fraction (HFpEF) and affects most patients with HFpEF. Patients living with obesity may experience delays in HFpEF diagnosis and management. We aimed to understand the clinical journey of patients with obesity and HFpEF and the role of primary care providers (PCPs) in diagnosing and managing patients with both conditions. Methods: An anonymous, US population-based online survey was conducted in September 2020 among 114 patients with self-reported HFpEF and obesity and 200 healthcare providers, 61 of whom were PCPs who treat patients with HFpEF and obesity. Results: Half of patients (51%) with HFpEF reported waiting an average of 11 months to discuss their symptoms with a PCP; 11% then received their diagnosis from a PCP. PCPs initiated treatment and oversaw the management of HFpEF only 35% of the time, and 44% of PCPs discussed obesity treatment medication options with their patients. Only 20% of PCPs indicated they had received formal obesity management training, and 79% of PCPs indicated they would be interested in obesity management training and support. Conclusion: PCPs could play a valuable role in addressing obesity and referring patients with obesity and signs and symptoms of HFpEF to cardiologists. Increased awareness of HFpEF and its link to obesity may help PCPs more quickly identify and diagnose their patients with these conditions. Plain Language Summary: Heart failure with preserved ejection fraction (HFpEF) is a common form of heart failure. Many patients who have HFpEF also have obesity or excess weight. We wanted to understand the medical experience of patients with HFpEF and obesity and the role that primary care providers (PCPs) play in managing patients with these diseases. We surveyed 114 patients with HFpEF and obesity and 200 healthcare providers who treat patients with HFpEF and obesity, 61 of whom were PCPs. One-quarter of patients had a major heart-related event that led to their HFpEF diagnosis. Half of the patients said they had an initial discussion about HFpEF symptoms with a PCP, but only one in ten were diagnosed by a PCP. Few PCPs said they received obesity management training, but most were interested in receiving more obesity management training and support. PCPs play an important role in organizing care for patients with HFpEF and obesity. However, there is room to improve HFpEF awareness and access to obesity management tools and strategies among PCPs. [ABSTRACT FROM AUTHOR]

Individuals who migrate from their home country face a variety of challenges while adapting to the culture in the United States. Immigrant communities are at a significantly higher risk for poor health outcomes; therefore, assessing healthcare treatment for diverse and resilient immigrant populations, including Hispanic/Latine communities, is crucial to preserving their health, culture, and spirit. A paucity of literature exists surrounding perceptions of well-being in immigrant, Hispanic/Latine adults managing chronic diseases. Past studies have shown a discrepancy between providers' and patients' perceptions of healthcare options for overall well-being. We aim to share varying perspectives found within our work geared towards improving the quality of life for Hispanic/Latine immigrants managing chronic disease, especially type 2 diabetes mellitus and hypertension. The primary objective of this article is to strengthen the understanding of intersections between social, physical, financial, and spiritual health within an (im)migrant Hispanic/Latine community using semi-structured ethnographic interviews. These interviews have highlighted community resilience, demonstrating that individuals can adapt to major life transitions while maintaining balance across dimensions of health. This knowledge could be implemented by actively listening to patient concerns regarding their health dimensions to improve individualized and patient-centric care. [ABSTRACT FROM AUTHOR]

Introduction: Co‐design in health research involves patient and public involvement and engagement (PPIE) in intervention or service design. Traditionally, co‐design is undertaken in‐person; however, exploring online delivery is warranted. PPIE in co‐design must be considered carefully, and assumptions that in‐person approaches will transition automatically to an online environment should be avoided. Currently, there are a lack of evidence‐informed approaches to facilitating co‐design online. This study aimed to develop and evaluate a framework for authentically adapting health research co‐design into an online environment. Materials and Methods: The initial framework was developed through a literature review, synthesis of in‐person co‐design principles, and alignment of online strategies. The framework was then applied to a co‐design project with 10 participants across relevant PPIE groups (end‐users [n = 4], clinicians [n = 2], coaches [n = 2] and clinician−researchers [n = 2]). Participants' experiences of the online co‐design process were evaluated via a mixed‐methods design using surveys and semi‐structured interviews. Evaluation data were analysed using descriptive statistics and reflexive thematic analysis to inform a revised framework. Results: The developed framework, Partnership‐focussed Principles‐driven Online co‐Design (P‐POD) was used to design eight 90 min online co‐design workshops. Evaluation data involved 46 survey responses, and eight participants were interviewed on project completion. Survey data indicated that the process was satisfying, engaging and adhered to the P‐POD framework. Themes derived from interview data describe a respectful and collaborative online culture, valuing of diverse perspectives and space for healthy debate, how power was perceived as being shared but not equal and multiple definitions of success within and beyond the process. A final, refined P‐POD framework is presented. Conclusion: With evaluation of the initial P‐POD framework showing evidence of adherence to co‐design principles, positive participant experiences and goal achievement for both the project and the participants, the refined P‐POD framework may be used and evaluated within future intervention or service design. Patient or Public Contribution: This study involved the participants (end‐users, clinicians and service providers) in the co‐design process described, interpretation of the results through member‐checking interview responses, assisting in development of the final framework and as co‐authors for this manuscript. [ABSTRACT FROM AUTHOR]

Background Transient ischaemic attack (TIA) is characterised by its transient nature with symptoms of neurological dysfunction resolving within 24 hours. The occurrence of TIA is a major risk factor for stroke with 10-15% of TIA patients going on to have ischaemic stroke. Internationally, recommendations for the management of TIA focus on the need for early diagnosis and medical management of the acute increased risk of ischaemic stroke. However there is a limited amount of evidence that some patients suffer enduring consequences as a result of this 'transient' event. This paper focusses on patients' long term lived experience following a TIA. Methods Semi structured interviews were carried out with patients who had a TIA between two and 24 months previously. Participants were asked about their TIA, the advice and management received and any changes made as a result of the TIA. Interviews were recorded and transcribed verbatim. Thematic content analysis involved scrutinising transcripts to look for links and associations within and between accounts in a process similar to the grounded theory approach of open coding. The category of transience emerged and was explored in more detail to examine the enduring consequences of TIA. Results Thirty nine patients aged between 31 and 89 years were interviewed. Accounts detailed the long term impact of the TIA and the subsequent 'at risk' status, on the physical and psychosocial wellbeing of participants. Some participants sought to proactively manage the consequences of their TIA but found it difficult to obtain the information and support they needed, whereas others felt that no further action was needed to prevent future stroke. Conclusion Current definitions conceptualise TIA as a transient event however our study suggests that some patients experienced long term consequences as a result of their TIA. These included anxiety and uncertainty in the light of their increased stroke risk. TIA patients need access to detailed, evidence based stroke prevention information from a credible source, and support to help them understand and apply the information over time, if they are to effectively selfmanage the long term consequences of TIA and reduce their risk of future stroke. [ABSTRACT FROM AUTHOR]

Background: Statistics indicate a high prevalence of TBI in South Africa, with many individuals with TBI not returning to work. The lack of return to work among TBI survivors is particularly due to factors such as injury severity, preinjury educational and occupational status, and age at injury. However, in addition to the above factors, there was the COVID‐19 pandemic, which resulted in the de‐escalation of nonessential outpatient services in order to assist with curbing the spread of the virus. Objective: The aim of the article is to explore the experiences and perceptions of TBI survivors about accessing vocational rehabilitation during the COVID‐19 pandemic and how this has affected their worker roles. Method: A descriptive, explorative qualitative research design was used, and semistructured interviews were conducted to collect data. The authors subsequently analysed the transcribed data using a thematic analysis approach. The COREQ (consolidated criteria for reporting qualitative research) checklist was used as a reporting guideline. Ten TBI survivors and two individuals working in the public health sector participated in this study. Two semistructured interviews were conducted with each research participant. Results: Three themes emanated from the study, namely, Theme 1: "The barriers to accessing rehabilitation during the COVID‐19 pandemic" represents the participants' barriers to accessing rehabilitation programmes throughout the COVID‐19 pandemic. Theme 2: "Lack of rehabilitation negatively influenced the individual with TBI occupational performance" describes how the lack of OT rehabilitation during the COVID‐19 pandemic impacted the participants' quality of life. Theme 3: "Factors that facilitated access to rehabilitation during the COVID‐19 pandemic" describes the factors that facilitated access to OT rehabilitation services during the COVID‐19 pandemic. Conclusion: The study found that there were barriers and facilitators to accessing occupational therapy rehabilitation during the COVID‐19 pandemic for TBI survivors. More research needs to be conducted to explore the efficacy of telehealth/telemedicine for occupational therapy rehabilitation and the role of the occupational therapist in global pandemics. [ABSTRACT FROM AUTHOR]

Background: While patients from low socioeconomic (SES) backgrounds are at increased risk of developing chronic health conditions, typically managed within general practice, they report fewer positive consultation experiences with GPs than patients from higher SES groups. To our knowledge, existing research does not provide an in-depth understanding of the GP conducts that contribute to positive consultations. Aim: To identify the factors that patients from low SES backgrounds perceive as essential for creating good consultation experiences. Design & setting: This exploratory pilot study was performed in GP clinics in Melbourne, Australia. Method: We used an appreciative inquiry approach, focused on positive consultation experiences, previously shown to be helpful for researching sensitive topics. Nine patients from low SES backgrounds, who reported positive consultation experiences, undertook a semi-structured qualitative interview while watching the video recording of their GP consultation. Four different GPs were captured in the recordings. Inductive thematic coding was performed by two researchers. Results: The following four categories were developed: 1) the doctor’s demeanour and how the patient was made to feel during the consultation drove their engagement; 2) an established and collaborative therapeutic relationship was of high importance to patients; 3) a doctor’s therapeutic skillset was integral to patient confidence and comfort; and 4) patients appreciated verbal and non-verbal communication techniques. In each interview, the discussion about the video-recorded consultation often triggered reflections about previous consultations with the respective GP. Conclusion: For patients from low SES groups, positive consultation experiences were underpinned by perceived continuity of care with a specific GP who consistently showed good communication skills and key interpersonal characteristics. This research is a small step towards increasing our understanding of the experience of individuals from low SES backgrounds in primary care and the existing health inequities within this area. [ABSTRACT FROM AUTHOR]

Background: Culturally sensitive care is integral to effective and equitable healthcare delivery, necessitating an understanding and acknowledgment of patients' cultural needs, preferences, and expectations. This study investigates the perceptions of cultural sensitivity among general practitioners (GPs), focusing on their intentions, willingness and perceived responsibilities in providing care tailored to cultural needs. Methods: In-depth interviews were conducted with 21 Flemish GPs to explore their perspectives on culturally sensitive care. Data analysis followed a conventional qualitative content analysis approach within a constructivist framework. A coding scheme was developed to identify recurring themes and patterns in the GPs' responses. Results: Findings reveal that culturally sensitive care provision is perceived as a multifaceted process, initiated by an exploration phase where GPs inquire about patients' cultural needs and preferences. Two pivotal factors shaping culturally sensitive care emerged: patients' specific cultural expectations and GPs' perceived responsibilities. These factors guided the process of culturally sensitive care towards three distinct outcomes, ranging from complete adaptation to patients' cultural requirements driven by a high sense of responsibility, through negotiation and compromise, to a paternalistic approach where GPs expect patients to conform to GPs' values and expectations. Three typologies of GPs in providing culturally sensitive care were identified: genuinely culturally sensitive, surface-level culturally sensitive, and those perceiving diversity as a threat. Stereotyping and othering persist in healthcare, underscoring the importance of critical consciousness and cultural reflexivity in providing patient-centered and equitable care. Conclusions: This study emphasizes the significance of empathy and underscores the necessity for GPs to embrace the exploration and acknowledgement of patients' preferences and cultural needs as integral aspects of their professional role. It highlights the importance of shared decision-making, critical consciousness, cultural desire and empathy. Understanding these nuances is essential for enhancing culturally sensitive care and mitigating healthcare disparities. [ABSTRACT FROM AUTHOR]

Introduction: Despite significant advances in the management of lung cancer, patients continue to experience a high burden of unmet need impacting quality of life and outcomes of care. Achieving value‐based health care, where investment is targeted to services that deliver optimal experience and outcomes of care relative to the cost of delivering that care, requires attention to what people value most in meeting their needs. To date there has been little attention to what matters most to patients with lung cancer (i.e., what they value) as a component of achieving value‐based cancer care. This qualitative study was undertaken to investigate components of care valued by people with lung cancer in Australia. Methods: This qualitative study used semistructured interviews with 23 people with lung cancer. Participants were recruited using a purposive sampling strategy from two metropolitan tertiary public health services. Data collected included demographic characteristics and patient perspectives regarding their priority concerns and components of care identified as most valuable in meeting their needs. Demographic characteristics of participants were analysed descriptively, and qualitative data were analysed thematically using Interpretive Description. Results: Data analysis generated three key themes: valued components of care; benefits of receiving valued care components and consequences of missed opportunities for care. The components of care valued by patients reflect the core dimensions of cancer supportive care, with particular emphasis on ongoing opportunities for consultation (screening for unmet needs) and provision of person‐centred information. The facilitation of trust between patients and their treating team, as a consequence of having these valued components evident in their care, was identified as a key characteristic of value‐based care. Conclusions: This study has identified valued components of care described by people with lung cancer. Importantly, the care components identified have been proven to improve access to and coordination of care, and demonstrate the importance of integrating supportive care into care provision to achieve value‐based cancer care. Patient or Public Contribution: This study was informed by perspectives of lung cancer patients who participated in semistructured interviews. We acknowledge that this contribution does not meet the criteria for patient and public involvement in research as defined by Health Expectations, but this study forms part of a larger program of cancer supportive care work being undertaken by this team, where comprehensive consumer engagement and co‐design approaches are embedded in our work. [ABSTRACT FROM AUTHOR]

Introduction: People being investigated for cancer face a wealth of complex information. Non‐specific symptom pathways (NSS) were implemented in the United Kingdom in 2017 to address the needs of patients experiencing symptoms such as weight loss, fatigue or general practitioner 'gut feeling', who did not have streamlined pathways for cancer investigation. This study aimed to explore the health literacy skills needed by patients being investigated for cancer in NSS pathways. Methods: This study employed ethnographic methods across four hospitals in England, including interviews, patient shadowing and clinical care observations, to examine NSS pathways for cancer diagnosis. We recruited 27 patients who were shadowed and interviewed during their care. We also interviewed 27 professionals. The analysis focused on patient communication and understanding, drawing on the concepts of personal and organisational health literacy. Results: Our analysis derived six themes highlighting the considerable informational demands of the NSS pathway. Patients were required to understand complex blood tests and investigations in primary care and often did not understand why they were referred. The NSS pathway itself was difficult to understand with only a minority of patients appreciating that multiple organs were being investigated for cancer. The process of progressing through the pathway was also difficult to understand, particularly around who was making decisions and what would happen next. The results of investigations were complex, often including incidental findings. Patients whose persistent symptoms were not explained were often unsure of what to do following discharge. Conclusion: We have identified several potential missed opportunities for organisations to support patient understanding of NSS pathways which could lead to inappropriate help‐seeking post‐discharge. Patients' difficulties in comprehending previous investigations and findings could result in delays, overtesting or inadequately targeted investigations, hindering the effective use of their medical history. Third, patients' limited understanding of their investigations and results may impede their ability to engage in patient safety by reporting potential care errors. Patient or Public Contribution: Patient, public, clinical and policy representatives contributed to developing the research objectives through a series of meetings and individual conversations in preparation for the study. We have held several events in which patients and the public have had an opportunity to give feedback about our results, such as local interest groups in North London and academic conferences. A clinical contributor (J.‐A. M.) was involved in data analysis and writing the manuscript. [ABSTRACT FROM AUTHOR]

One of the core principles of providing care in general practice is giving more to those who need it most. We investigate some of the complexities of this ambition in the context of cancer care for patients defined as socially disadvantaged by their general practitioner (GP). We do this by exploring how care is sought, how it is offered, and what expectations patients and GPs carry with them when receiving and providing cancer care in the Danish welfare state. We carried out semi-structured interviews with eight GPs and seven socially disadvantaged cancer patients living with different types and stages of cancer. The interviews focused on needs and challenges in cancer follow-up in general practice and were thematically coded. Drawing on theoretical concepts of morality and Nordic individualism, we point to how one of the main challenges in cancer care and follow-up is to figure out how the doctor-patient relationship should be established, practiced, and maintained. Both GPs and patients stressed the importance of the relationship, but how it should be practiced amidst social norms about being a patient, a citizen and how care-seeking should unfold seems less clear. In conclusion we argue that giving more to those who need it the most is a difficult and ill-defined task that is shaped by the cultural, social, and political expectations of both GPs and patients. [ABSTRACT FROM AUTHOR]

Background: Values are broadly understood to have implications for how individuals make decisions and cope with serious illness stressors, yet it remains uncertain how patients and their family and friend caregivers discuss, reflect upon, and act on their values in the post-left ventricular assist device (LVAD) implantation context. This study aimed to explore the values elicitation experiences of patients with an LVAD in the post-implantation period. Methods: Qualitative descriptive study of LVAD recipients. Socio-demographics and patient resource use were analyzed using descriptive statistics and semi-structured interview data using thematic analysis. Adult (> 18 years) patients with an LVAD receiving care at an outpatient clinic in the Southeastern United States. Results: Interviewed patients (n = 27) were 30–76 years, 59% male, 67% non-Hispanic Black, 70% married/living with a partner, and 70% urban-dwelling. Three broad themes of patient values elicitation experiences emerged: 1) LVAD implantation prompts deep reflection about life and what is important, 2) patient values are communicated in various circumstances to convey personal goals and priorities to caregivers and clinicians, and 3) patients leverage their values for strength and guidance in navigating life post-LVAD implantation. LVAD implantation was an impactful experience often leading to reevaluation of patients' values; these values became instrumental to making health decisions and coping with stressors during the post-LVAD implantation period. Patient values arose within broad, informal exchanges and focused, decision-making conversations with their caregiver and the healthcare team. Conclusions: Clinicians should consider assessing the values of patients post-implantation to facilitate shared understanding of their goals/priorities and identify potential changes in their coping. [ABSTRACT FROM AUTHOR]

Introduction: Almost one third of people affected by leprosy in Colombia suffer from disability, which often results from delayed diagnosis and treatment. We aimed to explore the experience of people affected by leprosy during the process of diagnosis and treatment and if and how this experience was influenced by peers. Methods: A qualitative study using body map stories was conducted from October 2019 to February 2020 in Colombia. Adult people affected by leprosy were recruited through patient associations in different cities. We conducted three sessions with an average duration of 2–3 h per participant, during which the participants created a painted map of their body and chose symbols to represent their experience, while being engaged in an informal interview. The sessions were audio recorded, transcribed verbatim and analyzed thematically by an interdisciplinary team, consisting of physicians, social workers and a person affected by leprosy. Results: The 17 study participants (11 female) were aged 20 to 70 years. Leprosy-related manifestations ranged from no to advanced disability. Some participants were active members of associations for people affected by leprosy. Three main themes were identified during analysis: (1) A long pathway to diagnosis, (2) Therapy as a double-edged sword and (3) The influence of other people affected by leprosy. The participants described an often years-long process until being diagnosed, which was marked by insecurities, repeated misdiagnosis, and worsening mental and physical health. Delayed diagnosis was related to late health care seeking, but also to inadequate health communication, lack of leprosy-related knowledge and negligence among health care workers. A high desire to cure motivated the participants to take their medication rigorously, despite the high treatment burden. Support from peers, either within the own social environment or provided from associations, contributed to a faster diagnosis and increased therapy adherence. Peers helped to recognize the symptoms, urged patients to seek care, recommended physicians with leprosy-related knowledge and provided a realistic example of both disease severity and curability. Conclusion: People affected by leprosy experience a significant burden during the process of diagnosis and treatment. Involving well-trained peers could foster early diagnosis, treatment compliance and prevention of disability. [ABSTRACT FROM AUTHOR]

Background: Despite worldwide concern about the poor physical health of patients with schizophrenia spectrum disorders (SSD), physical health screening rates are low. This study reports nurses' and patients' experiences of physical health screening among people with SSD using the Finnish Health Improvement Profile (HIP-F) and their ideas for implementation improvements. Methods: A qualitative exploratory study design with five group interviews with nurses (n = 15) and individual interviews with patients with SSD (n = 8) who had experience using the HIP-F in psychiatric outpatient clinics. Inductive content analysis was conducted. Results: Two main categories were identified. First, the characteristics of the HIP-F were divided into the subcategories of comprehensive nature, facilitating engagement, interpretation and rating of some items and duration of screening. Second, suggestions for the implementation of physical health screening consisted of two subcategories: improvements in screening and ideas for practice. Physical health screening was felt to increase the discussion and awareness of physical health and supported health promotion. The HIP-F was found to be a structured, comprehensive screening tool that included several items that were not otherwise assessed in clinical practice. The HIP-F was also considered to facilitate engagement by promoting collaboration in an interactive way. Despite this, most of the nurses found the HIP-F to be arduous and too time consuming, while patients found the HIP-F easy to use. Nurses found some items unclear and infeasible, while patients found all items feasible. Based on the nurses' experiences, screening should be clear and easy to interpret, and condensation and revision of the HIP-F tool were suggested. The patients did not think that any improvements to the HIP-F were needed for implementation in clinical settings. Conclusions: Patients with schizophrenia spectrum disorders are willing to participate in physical health screening. Physical health screening should be clear, easy to use and relatively quick. With this detailed knowledge of perceptions of screening, further research is needed to understand what factors affect the fidelity of implementing physical health screening in clinical mental health practice and to gain an overall understanding on how to improve such implementation. [ABSTRACT FROM AUTHOR]

Internally displaced women are underserved by health schemes and policies, even as they may face greater risk of violence and unplanned pregnancies, among other burdens. There are an estimated 450,000 internally displaced persons in India, but they are not formally recognised as a group. Displacement has been a common feature in India's northeast region. This paper examines reproductive and maternal health (RMH) care-seeking among Bru displaced women in India. The study employed qualitative methodology: four focus group discussions (FGDs) were held with 49 displaced Bru women aged 18–45 between June and July 2018; three follow-up interviews with FGD participants and five in-depth interviews with community health workers (Accredited Social Health Activists – ASHAs) in camps for Bru displaced people in the Indian state of Tripura. All interviewees gave written or verbal informed consent; discussions were conducted in the local dialect, recorded, and transcribed. Data were indexed deductively from a dataset coded using grounded approaches. Most women were unaware of many of the RMH services provided by health facilities; very few accessed such care. ASHAs had helped increase institutional deliveries over the years. Women were aware of temporary contraceptive methods as well as medical abortion, but lacked awareness of the full range of contraceptive options. Challenges in accessing RMH services included distance of facilities from camps, and multiple costs (for transport, medicines, and informal payments to facility staff). The study highlighted a need for comprehensive intervention to improve RMH knowledge, attitudes, and practices among displaced women and to reduce access barriers. [ABSTRACT FROM AUTHOR]

INTRODUCTION: Youth health outcomes are poor in New Zealand and have a life-long impact on individuals, wha-nau (family) and society. Little is known about how young people view their experiences of general practice care despite it being the most common place to access health care. AIM: This study sought to explore young peoples' experiences of care in a selected, youth-friendly general practice. METHODS: In-depth individual interviews with six young people. RESULTS: Four themes were identified from young peoples' narratives in relation to their experiences of general practice care: going to the doctor is not easy for a young person; the attributes of staff make all the difference; specific youth-friendly consultation practices help young people; and a youth-friendly physical environment can help young people access services and feel safe. DISCUSSION: Even though the study general practice had explicitly instituted youth-friendly initiatives, including offering no-charge consultations and specialist staffmembers, young people still described considerable barriers to attendance. Many barriers are practice-based and could bemodified by staff training, provision of further youth care staff roles and consideration of environmental changes. Other barriers such as waiving prescription costs need government funding. [ABSTRACT FROM AUTHOR]

Background: NHS Health Check (NHSHC) is a national cardiovascular disease (CVD) risk identification and management programme. However, evidence suggests a limited understanding of the most used metric to communicate CVD risk with patients (10-year percentage risk). This study used novel application of video-stimulated recall interviews to understand patient perceptions and understanding of CVD risk following an NHSHC that used one of two different CVD risk calculators. Methods: Qualitative, semi-structured video-stimulated recall interviews were conducted with patients (n = 40) who had attended an NHSHC using either the QRISK2 10-year risk calculator (n = 19) or JBS3 lifetime CVD risk calculator (n = 21). Interviews were transcribed and analysed using reflexive thematic analysis. Results: Analysis resulted in the development of four themes: variability in understanding, relief about personal risk, perceived changeability of CVD risk, and positive impact of visual displays. The first three themes were evident across the two patient groups, regardless of risk calculator; the latter related to JBS3 only. Patients felt relieved about their CVD risk, yet there were differences in understanding between calculators. Heart age within JBS3 prompted more accessible risk appraisal, yet mixed understanding was evident for both calculators. Event-free survival age also resulted in misunderstanding. QRISK2 patients tended to question the ability for CVD risk to change, while risk manipulation through JBS3 facilitated this understanding. Displaying information visually also appeared to enhance understanding. Conclusions: Effective communication of CVD risk within NHSHC remains challenging, and lifetime risk metrics still lead to mixed levels of understanding in patients. However, visual presentation of information, alongside risk manipulation during NHSHCs can help to increase understanding and prompt risk-reducing lifestyle changes. Trial registration: ISRCTN10443908. Registered 7th February 2017. [ABSTRACT FROM AUTHOR]

Background: Effective communication with GPs (General Practitioners) enables higher rates of patient satisfaction and adherence to treatment plans. People with severe mental illness (SMI) and their caregivers present unique characteristics that present difficulties in the GP-carer-patient communication process. Aim: To explore the expectations of patients with SMI and their caregivers regarding GPs' communication skills in primary care consultations. Design & setting: Face-to-face interviews, using focus group methodology, which were undertaken in southern Spain. Method: Forty-two participants took part in 21 paired semi-structured interviews with an average duration of 19±7.2 minutes. Information was audio-recorded and transcribed verbatim. Qualitative content analysis was undertaken, obtaining a codification in categories by means of triangulation. Results: Four themes emerged from the analysis. Theme 1 was interviewer communication characteristics. The ability of GPs to use a language that was colloquial and adapted to each person was perceived as a determinant of the quality of care provided. An empathetic attitude, low reactivity, and efficient time management were the most valued communication skills. Theme 2 was telemedicine: telephone consultation and video consultation. The telephone consultation was perceived as a useful tool to care for people with SMI. Video consultation was valued as a requirement in isolated rural areas. Theme 3 was the role of the caregiver during the clinical interview. The caregiver was considered by the patients as an ally who improves the clinical interview. Theme 4 was the perceived barriers and facilitators during the clinical interview. The continuity of care, defined by a low turnover of GPs, determined the quality perceived by those who required care. Conclusion: Themes emerging from this study have suggested that people with SMI require an inclusive, collaborative, and personalised approach in the care they receive from the public health system. Improved communication between GPs and patients with SMI is an essential requirement for quality medical care. [ABSTRACT FROM AUTHOR]

Introduction: In the United Kingdom, fractures of the cervical dens process in older and/or frail patients are usually managed nonsurgically in a hard collar. However, hard collars can lead to complications and this management approach is now being questioned, with growing interest in maximising patients' short‐term quality‐of‐life. It is vital that patients' perspectives are considered; yet, there is a dearth of literature examining the aspect. To help inform wider decision‐making about use of collar/no collar management of dens fractures in older/frail people, we explored older/frail people's experience of the two management approaches and how they affected their perceived quality‐of‐life. Methods: We interviewed older and/or frail adults with a recent dens fracture (aged ≥65 years or with a clinical frailty score of ≥5) or their caregiver. Participants were recruited from both arms of a clinical trial comparing management using a hard collar for 12 weeks (SM) with early removal of the collar (ERC) and were interviewed following randomisation and again, 12–16 weeks later. Data were analysed using a framework approach. Results: Both participant groups (SM/ERC) reported substantial, negative quality‐of‐life (QoL) experiences, with the fall itself and lack of access to care services and information being frequent major contributory factors. Many negative experiences cut across both participant groups, including pain, fatigue, diminished autonomy and reduced involvement in personally meaningful activities. However, we identified some subtle, yet discernible, ways in which using SM/ERC reinforced or alleviated (negative) QoL impacts, with the perceived benefits/burdens to using SM/ERC varying between different individuals. Conclusion: Study findings can be used to support informed decision‐making about SM/ERC management of dens fractures in older/frail patients. Patient or Public Contribution: Public and patient involvement contributors were involved in the study design, development of interview topic guides and interpretation of study findings. [ABSTRACT FROM AUTHOR]

Background: Long Covid is an emerging long‐term condition, with those affected raising concerns about lack of healthcare support. Objective: We conducted a qualitative study to identify facilitators and barriers to healthcare access for people with Long Covid, aiming to enhance our understanding of the specific nature of these barriers and how patient experiences may vary. Setting and Participants: In the context of the Symptoms, Trajectory, Inequalities and Management: Understanding Long‐COVID to Address and Transform Existing Integrated Care Pathways (STIMULATE‐ICP) Delphi study, a nationally distributed online survey was conducted. Eight patients and eight healthcare practitioners (HCP) were interviewed via telephone or video call. Framework analysis, sensitised by the candidacy theory, was used to identify barriers and facilitators over four levels of access to care. Results: Three themes were identified: (i) patients' efforts to navigate emerging pathways for Long Covid, (ii) the patient–HCP interaction and (iii) service resources and structural constraints. Barriers to specialist care included long waiting times, communication gaps across services and a lack of continuity in care. Facilitators included collaborative, patient‐centred approaches, patients' active role in their healthcare and blended approaches for appointments. The perspectives of both patients and HCPs largely aligned. Discussion: The candidacy framework was valuable in understanding the experiences of people with Long Covid seeking access to healthcare. Individuals perceived themselves as eligible for care, but they often encountered obstacles in obtaining the expected level of care or, in some cases, did not receive it at all. Our findings are discussed in the context of the candidacy model through multiple processes of identification, negotiation, permeability and appearances at health services. These themes seem to be especially important for the emerging new pathway model and are relevant to both primary and secondary care. Conclusions: This study highlights that despite these interviews being conducted two years after the start of the COVID‐19 pandemic, people with Long Covid still struggle to access healthcare, emphasising the ongoing need to provide equitable timely healthcare access for people with Long Covid. Patient or Public Contribution: People with Long Covid advised on all stages of this research. [ABSTRACT FROM AUTHOR]

Background: About one million people in need of home care in Germany are assisted by 15,400 home care services. Home healthcare is mostly a complex endeavour because interprofessional collaboration is often challenging. This might negatively impact patient safety. The project interprof HOME aims to develop an interprofessional person-centred care concept for people receiving home care in a multistep approach. In one of the work packages we explored how people receiving home care, relatives, nurses, general practitioners, and therapists (physiotherapists, occupational therapists, and speech therapists) perceive collaboration in this setting. Methods: Semi-structured interviews were conducted with 20 people receiving home care and with 21 relatives. Additionally, we worked with nine monoprofessional focus groups involving nurses of home care services (n = 17), general practitioners (n = 14), and therapists (n = 21). The data were analysed by content analysis. Results: Three main categories evolved: "perception of interprofessional collaboration", "means of communication", and "barriers and facilitators". People receiving home care and relatives often perceive little to no interprofessional collaboration and take over a significant part of the organisational coordination and information exchange. Interprofessional collaboration in steady care situations does exist at times and mostly occurs in coordination tasks. Contact and information exchange are rare, however, interprofessional personal encounters are sporadic, and fixed agreements and permanent contact persons are not standard. These trends increase with the complexity of the healthcare situation. Joint collaborations are often perceived as highly beneficial. Means of communications such as telephone, fax, or e-mail are used differently and are often considered tedious and time-consuming. No interprofessional formal written or electronic documentation system exists. Personal acquaintance and mutual trust are perceived as being beneficial, while a lack of mutual availability, limited time, and inadequate compensation hinder interprofessional collaboration. Conclusions: Interprofessional collaboration in home care occurs irregularly, and coordination often remains with people receiving home care or relatives. While this individual care set-up may work sufficiently well in low complex care situations, it becomes vulnerable to disruptions with increasing complexity. Close interactions, joint collaboration, and fixed means of communication might improve healthcare at home. The findings were integrated into the development of the person-centred interprofessional care concept interprof HOME. Trial registration: This study is registered on the International Clinical Trails registry platform ClinicalTrials.gov as NCT05149937 on 03/11/2021. [ABSTRACT FROM AUTHOR]

Introduction. Regular diabetic foot checks, at least annually, are important for early identification of risk factors and prevention of ulceration and amputation. To ensure this, most general practices in Aotearoa New Zealand (NZ) offer free annual diabetes reviews (ADRs) which include a comprehensive foot evaluation. However, attendance rates at these ADRs are low. Aim. To explore patients' perspectives on the barriers to attending ADRs and foot checks. Methods. Semi-structured interviews with people with type 2 diabetes who were overdue their ADR (n = 13; 7 women, 6 Māori) from two urban practices were conducted. Interviews were audio recorded and transcribed verbatim and then analysed using an inductive thematic analysis approach. Results. We identified three key themes demonstrating barriers to attendance: healthcareassociated factors (suboptimal clinician-patient relationship, not having a consistent general practitioner (GP)); patient-related factors (co-morbid health conditions, issues surrounding identity, and logistical issues); and systemic factors (COVID-19 pandemic, travel distance to the practice, unawareness of available foot care services). Participants' feedback focused on patient-centred approaches for improvements to service delivery, for example using online educational materials, and utilising culturally appropriate models of health including Te Whare Tapa Whā and Whānau Ora approach. Discussion. We identified several barriers to attendance, some of which are potentially modifiable. Addressing modifiable barriers and incorporating suggestions made by participants may improve access to the ADR and reduce non-attendance. Further participatory action research could explore these insights in ways that facilitate tino rangatiratanga (self-determination) and palpable action. [ABSTRACT FROM AUTHOR]

Background: Indiscriminate use of laboratory blood testing in hospitals contributes to patient discomfort and healthcare waste. Patient engagement in low‐value healthcare can help reduce overuse. Understanding patient experience is necessary to identify opportunities to improve patient engagement with in‐hospital laboratory testing. Objectives: To understand patient experience with the process of in‐hospital laboratory blood testing. Methods: We used a qualitative study design via semistructured interviews conducted online or over the phone. Participants were adult patients or family members/caregivers (≥18 years of age) with a recent (within 12 months of interview) experience of hospitalization in Alberta or British Columbia, Canada. We identified participants through convenience sampling and conducted interviews between May 2021 and June 2022. We analysed transcripts using thematic content analysis. Recruitment was continued until code saturation was reached. Results: We interviewed 16 participants (13 patients, 1 family member and 2 caregivers). We identified four themes from patients' experiences of in‐hospital laboratory blood testing: (i) patients need information from healthcare teams about expected blood testing processes, (ii) blood draw processes should consider patient comfort and preferences, (iii) patients want information from their healthcare teams about the rationale and frequency of blood testing and (iv) patients need information on how their testing results affect their medical care. Conclusion: Current laboratory testing processes in hospitals do not facilitate shared decision‐making and patient engagement. Patient engagement with laboratory testing in hospitals requires an empathetic healthcare team that provides clear communication regarding testing procedures, rationale and results, while considering patient preferences and offering opportunities for involvement. Patient or Public Contribution: We interviewed 16 patients and/or family members/caregivers regarding their in‐hospital laboratory blood testing experiences. Our findings show correlations between patient needs and patient recommendations to make testing processes more patient‐centred. To bring a lived‐experience lens to this study, we formed a Patient Advisory Council with 9–11 patient research partners. Our patient research partners informed the research design, co‐developed participant recruitment strategies, co‐conducted data collection and informed the data analysis. Some of our patient research partners are co‐authors of this manuscript. [ABSTRACT FROM AUTHOR]

Background: Globally, the majority of people with HIV/AIDS live in sub-Saharan Africa. While the increasing availability of antiretroviral therapy is improving the outlook for many, its effects are yet to reach all of those in need and patients still present with advanced disease. This paper reports findings from qualitative interviews with patients living with AIDS and their caregivers who were receiving palliative care from Hospice Africa Uganda (HAU). We aimed to understand what motivated patients and their families to seek formal healthcare, whether there were any barriers to help- seeking and how the help and support provided to them by HAU was perceived. Methods: We invited patients with AIDS and their relatives who were newly referred to HAU to participate in qualitative interviews. Patients and carers were interviewed in their homes approximately four weeks after the patient's enrolment at HAU. Interviews were translated, transcribed and analysed using narrative and thematic approaches. Results: Interviews were completed with 22 patients (10 women and 12 men) and 20 family caregivers, nominated by patients. Interviews revealed the extent of suffering patients endured and the strain that family caregivers experienced before help was sought or accessed. Patients reported a wide range of severe physical symptoms. Patients and their relatives reported worries about the disclosure of the AIDS diagnosis and fear of stigma. Profound poverty framed all accounts. Poverty and stigma were, depending on the patient and family situation, both motivators and barriers to help seeking behaviour. Hospice services were perceived to provide essential relief of pain and symptoms, as well as providing rehabilitative support and a sense of caring. The hospice was perceived relieve utter destitution, although it was unable to meet all the expectations that patients had. Conclusion: Hospice care was highly valued and perceived to effectively manage problems such as pain and other symptoms and to provide rehabilitation. Participants noted a strong sense of being "cared for". However, poverty and a sense of stigma were widespread. Further research is needed to understand how poverty and stigma can be effectively managed in hospice care for patients for advanced AIDS and their families. [ABSTRACT FROM AUTHOR]

Background and objective: End‐stage renal disease (ESRD) affects a multitude of aspects in the patient's daily life, often entailing their own involvement in various aspects of the treatment. Although patient participation is a core health‐care value, what the concept signifies is not yet fully known. The purpose of this paper is to conceptualize patient participation in dialysis care, depicting patients' and health‐care professionals' perspectives. Design: This explorative study employed qualitative interviews and content analysis. Setting and participants: Seven focus group discussions engaging 42 key informants were performed, including patients, staff and managers with experience of dialysis care. Results: In dialysis care, patient participation connotes a sharing of information and knowledge, the learning of and planning of care, including partaking in shared decisions with regards to treatment and management, and being involved in the management of one's own health‐care treatment and/or self‐care activities. Although these attributes were illustrated by all stakeholders, their significance varied: patients suggested that their preferences regarding primary aspects of participation vary, while staff considered patients' performance of dialysis to be the ultimate form of participation. Further, while patients considered multiple ways to execute participation, staff suggested that aspects such as sharing information were a route to, rather than actual, involvement. Conclusions: Without a common understanding to denote the idea of patient participation, staff and patients are exposed to a potential deficit in terms of facilitating patient participation in everyday encounters of dialysis treatment. Further studies and means to serve a mutual understanding are needed. [ABSTRACT FROM AUTHOR]

Background: Understanding patients' perspectives regarding drug tolerability, in addition to effectiveness, provides a complete picture of the patient experience and supports more informed therapeutic decision-making. The item library of the National Cancer Institute's Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) was developed to measure patient-reported frequency, severity, and interference of adverse events (AEs) associated with cancer therapies. This qualitative interview study assessed the suitability of items selected from the PRO-CTCAE library for assessing tolerability of selexipag, a medication targeting the prostacyclin pathway for patients with pulmonary arterial hypertension (PAH). Methods: Two rounds of 10 qualitative, web-assisted telephone interviews following a semi-structured guide were conducted in individuals with recent experience taking oral selexipag for PAH. Each interview included concept elicitation to gather participants' perspectives on symptomatic AEs (type, frequency, severity, and interference) and cognitive debriefing of PRO-CTCAE items addressing the most frequently reported AEs of oral selexipag. Results: Interviews were conducted with 20 participants with PAH (mean [range] age 50 [24–68] years; 75% female; 85% in World Health Organization Functional Class II–III), comprising different races/ethnicities, levels of education, and employment status. Fifteen participants were currently treated with selexipag; five had taken selexipag for ≥ 6 months before discontinuing. The most frequently reported AEs included headache, jaw pain, and nausea (n = 15, 12, and 10 participants, respectively). Diarrhea and headache were identified as the most bothersome AEs by 5 and 4 participants, respectively. Some AEs were transitory (e.g., jaw pain); others were long-lasting (e.g., muscle pain). Based on findings from Round 1 interviews, a flushing item was added and the PRO-CTCAE general pain item was modified to be specific to jaw pain for testing in Round 2. Interview findings identified the following AEs as relevant to assess in a PAH clinical trial: nausea, vomiting, diarrhea, flushing, jaw pain, headache, aching muscles, and aching joints. Conclusions: The PRO-CTCAE items selected in this study and the additional symptomatic AEs identified as patient-relevant have the potential to be included in assessments capturing the patient perspective on tolerability in future studies of selexipag and possibly other PAH therapies. [ABSTRACT FROM AUTHOR]

Background: Given the deleterious effects of physical inactivity in persons with chronic obstructive pulmonary disease (COPD) and/or heart failure (HF), interventions that promote long-term daily physical activity are needed. Mindful Steps, designed to promote walking behaviors in COPD and HF, is a multicomponent intervention that integrates mind-body content with other self-regulatory components. The aim of the current qualitative study was to characterize participants' experiences with Mindful Steps and understand the perceived influence of the intervention on walking and health. Method: In the context of a pilot randomized controlled feasibility trial comparing the year-long Mindful Steps program to usual care among individuals with COPD and HF, semi-structured qualitative interviews were administered at 6- and 12-months. Interviews were audio recorded and transcribed. The constant comparative method was used to code transcripts, identify categories, and develop interrelated themes. Results: Nineteen participants (63% female; M age = 70.2 years, SD = 6.95) who were randomized to the intervention group completed the 6-month interview and 17 completed the 12-month interview. The pedometer with feedback, live group classes, and mind-body videos were described as the most helpful intervention components. Participants learned several strategies that helped their walking (e.g., breathing regulation and awareness, body awareness, mind-body techniques, pacing), described walking as enjoyable, and identified internal reasons for walking (e.g., to feel good). They also reported several physical and mental health benefits of the intervention. Some participants reported limited influence of the intervention on walking or health. Many participants continued to use the strategies they learned in the first half of the intervention at 12-months. Conclusions: The mind-body content of Mindful Steps appeared to positively influence walking behaviors. Participants' experiences with the intervention helped to identify areas for future intervention refinement. Future quantitative work is needed to corroborate these qualitative findings and assess the efficacy of the intervention on long-term physical activity engagement. Trial Registration: This trial is registered in Clinical Trials.gov, ID number NCT01551953. [ABSTRACT FROM AUTHOR]

Background: Screening patients with patient-reported outcome measures allows identification of palliative care concerns. The Integrated Palliative Care Outcome Scale (IPOS) was developed in the United Kingdom for this purpose. Tools developed in another setting might not be readily usable locally. We previously evaluated the validity and reliability of the IPOS in our cardiology setting. However, it remains uncertain what factors would influence the subsequent implementation of IPOS for routine screening of patients with advanced heart failure in future practice. Objectives: This study aimed to identify the factors that could affect the IPOS implementation for patients with advanced heart failure. Design: This was a qualitative study conducted at the National Heart Centre Singapore. Methods: Patients with advanced heart failure who participated in our previous IPOS validation study were purposively recruited for semi-structured interviews. Healthcare workers caring for these patients and involved in the testing of the IPOS tool were also invited for interviews. The interviews were analyzed thematically and mapped to the Consolidated Framework for Implementation Research (CFIR). Results: Our analysis identified six potential facilitators and six potential barriers to implementation across five major domains of the CFIR (intervention characteristics, inner setting, outer setting, individual characteristics, and process). Facilitators include: (i) perception of utility, (ii) perception of minimal complexity, (iii) perception of relatability, (iv) conducive culture, (v) dedicated resources, and (vi) advocates for implementation. Barriers include: (i) need for adaptation, (ii) mindsets/role strains, (iii) resource constraints, (iv) cultural concerns, (v) individual needs, and (vi) change process. Conclusion: Institutions could focus on cultivating appropriate perceptions and conducive cultures, providing dedicated resources for implementation and introducing facilitators to advocate for implementation. Adaptation of IPOS to suit workflows and individual needs, consideration of change processes, and systemic changes to alleviate cultural, resource, and staff role strains would improve IPOS uptake during actual implementation in clinical services. Trial registration: Not applicable. [ABSTRACT FROM AUTHOR]

To illuminate adolescents' experiences of Help Overcoming Pain Early (HOPE), a person‐centred intervention delivered in a school setting by school nurses. Twenty‐one adolescents with chronic pain recruited from secondary school, who had completed the HOPE intervention, were included in the interview study. The HOPE intervention was built on person‐centred ethics and consisted of four meetings between school nurses and adolescents on the subject of stress and pain management. A qualitative method using content analysis with an inductive approach was employed. In the interviews, the adolescents describe how they reclaim their lives with the help of HOPE. They use different strategies and parts of the intervention to move on with their lives. A trustful relationship, as that with the school nurse, was essential to dare to change. The overarching theme summarizes in Becoming myself again and is built up by three sub‐themes: Trust a pillar for growth, Making sense of my life with pain, and Putting myself into the world again. A person‐centred intervention such as HOPE applied in a school context is promising for promoting confidence in adolescents with chronic pain. A trust‐building process emerged, in terms of both the adolescents' trust in the healthcare staff they meet and their confidence in their own ability to handle and influence their situation, which in the long term can promote trust in themselves as a person. [ABSTRACT FROM AUTHOR]

Introduction. Some medical centers and surgeons require patients to stop smoking cigarettes prior to elective orthopaedic surgeries in an effort to decrease surgical complications. Given higher rates of smoking among rural individuals, rural patients may be disproportionately impacted by these requirements. We assessed the perceptions and experiences of rural-residing Veterans and clinicians related to this requirement. Methods. We conducted qualitative semistructured one-on-one interviews of 26 rural-residing veterans, 10 VA orthopaedic surgery staff (from two Veterans Integrated Services Networks), 24 PCPs who serve rural veterans (14 VA; 10 non-VA), and 4 VA pharmacists. Using the knowledge, attitudes, and behavior framework, we performed conventional content analysis. Results. We found three primary themes across respondents: (1) knowledge of and the evidence base for the requirement varied widely; (2) strong personal attitudes toward the requirement; and (3) implementation and possible implications of this requirement. All surgery staff reported knowledge of requirements at their institution. VA PCPs reported knowledge of requirements but typically could not recall specifics. Most patients were unaware. The majority of respondents felt this requirement could increase motivation to quit smoking. Some PCPs felt a more thorough explanation of smoking-related complications would result in increased quit attempts. About half of all patients reported belief that the requirement was reasonable regardless of initial awareness. Respondents expressed little concern that the requirement might increase rural-urban disparities. Most PCPs and patients felt that there should be exceptions for allowing surgery, while surgical staff disagreed. Discussion. Most respondents thought elective surgery was a good motivator to quit smoking; but patients, PCPs, and surgical staff differed on whether there should be exceptions to the requirement that patients quit preoperatively. Future efforts to augment perioperative smoking cessation may benefit from improving coordination across services and educating patients more about the benefits of quitting. [ABSTRACT FROM AUTHOR]

Background: One of the major challenges for healthcare professionals relates to awareness of patients' preferences relative to how and when to break bad news and how much information should be disclosed in the eventuality of a serious medical diagnosis or prognosis. On occasions, a serious medical diagnosis or prognosis is withheld from the patient. There is a scarcity of evidence about cultural preferences regarding breaking bad news in the palliative care setting in Ethiopia. Therefore, it is necessary to understand the surrounding cultural issues to properly convey bad news. The purpose of the study was to explore Ethiopian patients' cultural preferences for receiving bad news in a palliative care setting. Methods: A qualitative research approach and nonprobability, purposive sampling method were applied. In-depth interviews were employed to collect data from eight patients who were diagnosed with cancer and cancer with HIV/AIDS during the time of data collection. Thematic analysis was applied to identify themes and subthemes. The data were transcribed verbatim and analysed using ATLAS.ti 22 computer software. Results: The following three themes emerged and are reported in this study: (1) Perceptions about life-threatening illness: religious values and rituals are essential for establishing perspectives on life-threatening illnesses and preferences in receiving bad news. (2) Experiences with life-threatening illness: study participants' experience with the method of breaking bad news was sad, and they were not provided with sufficient details about their medical condition. Making appropriate decisions, fulfilling the ordinance of religious faith, and avoiding unnecessary costs were outlined as benefits of receiving bad news. (3) Preferred ways of breaking bad news; the findings revealed that incremental, amiable and empathic methods for delivering bad news were preferred. It was suggested that the presence of family members is crucial when receiving bad news. Conclusion: Patients choose to be told about their medical conditions in the presence of their family. However, the patient's needs for receiving bad news were unmet. Patients should be involved in the treatment decision process. Delivery of bad news needs to tailor the preferred methods, cultural values, and religious beliefs. Delivering bad news according to the patients' preferences helps to fulfil their wishes in palliative care. [ABSTRACT FROM AUTHOR]

Introduction The inequity of randomising participants to control groups in randomised controlled trials (RCTs) is often considered inappropriate, especially for research trials that include vulnerable populations such as Indigenous peoples. The Aboriginal and Torres Strait Islander Women's Fitness Program conducted a trial that randomly assigned participants to 'active' and 'waitlisted' groups. This paper reports on participant views of the randomisation protocol. Methods A pragmatic RCT was conducted in an urban setting to assess the effectiveness of the 12-week Aboriginal and Torres Strait Islander Women's Fitness Program on metabolic health outcomes and waist circumference. Qualitative interviews were conducted at follow-up, one of the objectives was to explore participant perspectives on the research protocol, including participant randomisation to 'Active' and 'Waitlisted' groups. Results A total of 49 interviews were conducted (26 Active and 23 Waitlisted participants).Two key factors influenced participant views on the protocol: 1) group assignment; and 2) how well they understood the research design, including the justification for randomisation. 'Active' participants were concerned about the inequity of the randomisation process but overall supported the study protocol. Although most Waitlisted participants were disappointed about having to wait 12-months for the program, some participants derived motivation from being waitlisted, whilst others lost motivation. Well-informed participants were more likely to express both support for the randomisation process and an understanding of the research benefits than participants not attending an information session prior to registration. Conclusions Participants were more accepting of the research protocol if it was clearly explained to them, if they understood the randomisation process and felt the randomisation was justified in terms of the potential for the results to benefit other Aboriginal and Torres Strait Islander women. Our study suggests that the time and resources required to adequately explain the research protocol in research trials should not be undervalued. Trial registration Australian New Zealand Clinical Trials Registry (ACTRN12610000224022). [ABSTRACT FROM AUTHOR]

Background: Problem alcohol use is common and associated with considerable adverse outcomes among patients who attend primary care in Ireland and other European countries for opiate substitution treatment. This paper aims to describe patients' experience of, and attitude towards, screening and therapeutic interventions for problem alcohol use in primary care. Methods: This qualitative study recruited problem drug users (N = 28) from primary care based methadone programmes in the Ireland's Eastern region, using a stratified sampling matrix to include size of general practice and geographical area. Semi-structured interviews were conducted and analysed using thematic analysis, and audited by a third reviewer. Results: We identified three overarching themes relevant to the purpose of this paper: (1) patients' experience of, and (2) attitude towards, screening and treatment for problem alcohol use in primary care, as well as their (3) views on service improvement. While most patients reported being screened for problem alcohol use at initial assessment, few recalled routine screening or treatment. Among the barriers and enablers to screening and treatment, patients highlighted the importance of the practitioner-patient relationship in helping them address the issue. Nevertheless, patients felt that healthcare professionals should be more proactive in the management of problem alcohol use at a primary care level and that primary care can play an important role in their treatment. Conclusions: Problem alcohol use is an important challenge in the care of problem drug users. While primary care is well placed to address this issue, little data has reported on this topic. The development of interventions which promote screening and brief interventions in practice are likely to benefit this at-risk group and further research and education, that help achieve this goal, are a priority. Strategies such as dissemination of clinical guidelines, educational videos, academic detailing and practice visits, should be explored. [ABSTRACT FROM AUTHOR]

Background: Given its apparent benefits, early mobilization is becoming increasingly important in spinal surgery. However, the time point at which patients first get out of bed for mobilization after spinal surgery varies widely. Beginning in January 2022, we conducted a study of early mobilization (mobilization within 4 h postoperatively) following multi-segment lumbar decompression and fusion surgery in elderly patients. The study goal was to better understand elderly patients' perceptions of early mobilization and ultimately contribute to the improvement of elderly patients' perioperative experiences and quality of life. Methods: We employed a qualitative descriptive study design involving face-to-face semi-structured interviews. Forty-five consecutive patients were invited, among whom 24 were enrolled and completed the qualitative investigation from February to June 2022. Of these 24 patients, 10 underwent early mobilization (mobilization within 4 h postoperatively) and 14 underwent mobilization at ≥ 24 h postoperatively. Three researchers conducted a 15-question interview the day before each patient's discharge. The interviews were audio-recorded, and content analysis was used to assess the data. Results: Six themes regarding the patients' experiences and concerns about early mobilization were identified: worries, benefits, daily routines, pain, education, and support. The study results revealed the obstacles in early mobilization practice and highlighted the importance of perioperative education on early mobilization. Conclusions: Clear and explicit guidance on early mobilization and a multidisciplinary mobilization protocol that incorporates a comprehensive pain management plan are essential for effective patient education. These measures may have positive effects on reducing patients' stress and anxiety regarding postoperative early mobilization. [ABSTRACT FROM AUTHOR]

Background. The expansion of COVID-19 and its unique transmission speed created an emergency situation in global health. This disease not only causes public health concerns but also has many psychological consequences for patients. In this situation, maintaining the mental health of individuals is essential. Therefore, focusing on the human aspects of the threat perceived by patients could lead the way for the provision of empathetic and effective care. Objectives. The aim of this study was to investigate the perspectives and experiences of patients with COVID-19. Material and methods. In this qualitative study, 27 patients with COVID-19 were purposefully selected and interviewed in semi-structured in-depth manner. Interviews continued until data saturation. All interviews were recorded and analysed using the MAXQDA 10 software and the contractual content analysis method via the Graneheim and Lundman approach. The accuracy and robustness of the research was obtained based on Guba and Lincoln criteria. Results. The codes extracted from the interviews led to the emergence of two main themes including “negative emotions” and “sense of cohesion” and five categories of stigma experience, psychological distress, perceived threat, positive perception and spirituality. Conclusions. Individuals experience critical crises in the face of stressful life events, including COVID-19, from negative emotions to psychological adjustment. Going through the crisis stage and achieving stability and peace requires a change of attitude towards everything around the person and the use of spiritual forces to achieve adaptation. [ABSTRACT FROM AUTHOR]

Introduction: Head and neck cancer (HNC) is the eighth most common cancer in the United Kingdom. Survival rates improve when the cancer is diagnosed at an early stage, highlighting a key need to identify at‐risk patients. This study aimed to explore opportunistic HNC identification and referral by community pharmacists (CPs) using a symptom‐based risk assessment calculator, from the perspective of patients with a diagnosis of HNC. Methods: Purposive sampling was used to recruit patients from the HNC pathway in three large teaching hospitals in Northern England. Qualitative methodology was used to collect data through an iterative series of semistructured telephone interviews. Framework analysis was utilised to identify key themes. Results: Four main themes were constructed through the analytic process: (1) HNC presentation and seeking help; (2) the role of the CP; (3) public perception of HNC and (4) the role of a symptom‐based risk calculator. Participants agreed that CPs could play a role in the identification and referral of suspected HNCs, but there were concerns about access as patients frequently only encounter the medicine counter assistant when they visit the pharmacy. HNC symptoms are frequently attributed to common or minor conditions initially and therefore considered not urgent, leading to delays in seeking help. While there is public promotion for some cancers, there is little known about HNC. Early presentation of HNC can be quite variable, therefore raising awareness would help. The use of a symptom‐based risk calculator was considered beneficial if it enabled earlier referral and diagnosis. Participants suggested that it would also be useful if the public were made aware of it and could self‐assess their symptoms. Conclusion: In principle, CPs could play a role in the identification and referral of HNC, but there was uncertainty as to how the intervention would work. Future research is needed to develop an intervention that would facilitate earlier identification and referral of HNC while not disrupting CP work and that would promote HNC and the risk calculator more widely. Patient or Public Contribution: Patient and public involvement and engagement (PPIE) was integrated throughout the project. Initially, the proposal was discussed during a Cancer Head and Neck Group Experience (CHANGE) PPIE meeting. CHANGE was set up to support HNC research in 2018. The group is composed of seven members (four female, three male) with an age range of 50–71 years, who were diagnosed at Sunderland Royal Hospital. A patient representative from the University of Sunderland PPIE group and a trustee of the Northern HNC Charity were recruited as co‐applicants. They attended project management group meetings and reviewed patient‐facing documentation. [ABSTRACT FROM AUTHOR]