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AbstractPurposeMethodResultsConclusion\nIMPLICATIONS FOR REHABILITATIONIndividuals with traumatic brachial plexus injuries (TBPI) may experience lifelong physical and psychosocial consequences. With or without surgical treatment, the rehabilitation is considered important. Physiotherapists and occupational therapists face challenges due to the scarcity of evidence-based rehabilitation protocols after TBPI. There is limited knowledge about patients’ experiences with rehabilitation. This study aims to explore and describe patients’ experiences of rehabilitation after a TBPI.Transcripts from five focus groups with 21 participants after TBPI and rehabilitation were coded and analysed with a qualitative content analysis. The discussion guide contained questions regarding experience of rehabilitation.The analysis revealed one overarching theme: “A fight on your own”, and three themes that include 1) Lack of tailored rehabilitation in a life-changing situation, 2) Crucial prerequisites for engagement in rehabilitation, and 3) Life will never be the same. The results highlighted the importance of healthcare professionals engaging with patients and advocates for comprehensive, person-centred rehabilitation programs across healthcare levels. Furthermore, participants value peer interaction, psychosocial support and up-to-date technology.Patients struggle to access person-centred rehabilitation from engaged and knowledgeable occupational and physiotherapists. Addressing both psychosocial and physical aspects and daily activities is crucial.Rehabilitation requires an interdisciplinary team with a person-centred approach, addressing both physical and psychosocial needs.Access to specialised rehabilitation is of great importance, due to considerable variations of needs; rehabilitation guidelines should be established and incorporated in specialised and local healthcare.Rehabilitation spans a long period, highlighting the need for healthcare professionals to collaborate with diverse experts to tailor interventions.Successful rehabilitation changes the perspective from difficulties to strengths and recognises the importance of knowledge and engagement of both the patient and the healthcare professionals.Rehabilitation requires an interdisciplinary team with a person-centred approach, addressing both physical and psychosocial needs.Access to specialised rehabilitation is of great importance, due to considerable variations of needs; rehabilitation guidelines should be established and incorporated in specialised and local healthcare.Rehabilitation spans a long period, highlighting the need for healthcare professionals to collaborate with diverse experts to tailor interventions.Successful rehabilitation changes the perspective from difficulties to strengths and recognises the importance of knowledge and engagement of both the patient and the healthcare professionals. [ABSTRACT FROM AUTHOR]

ABSTRACT: Background: This qualitative study aimed to explore the early experiences of individuals with patellofemoral arthritis in the Indian context. Method: The study was conducted in Gujarat, India, with 14 participants, recruited from regional orthopedic outpatient departments. They were interviewed either in person or online using the Zoom platform, with an expert clinician using a semistructured interview guide in the vernacular language. Results: A scoping review was conducted to find the reported symptoms of the condition, which were identified as anterior knee pain, crepitus, pain while sitting down, walking uphill, and kneeling. Thematic analysis was used to analyze the qualitative data, where four domains of initial symptoms of patellofemoral arthritis were identified: pain, crepitus, stiffness, and difficulty in functional activity. The findings suggest that pain was the primary concern for participants in the Indian context, and initial symptoms are highly affected by individual preferences. Conclusion: Acknowledging initial symptoms and measuring their severity must be taken into consideration to improve the prognosis of the condition. [ABSTRACT FROM AUTHOR]

Background: Hypertension is a significant public health challenge, particularly in low- and middle-income countries, where its management is often inadequate. Understanding patients' experiences and perspectives is crucial for improving hypertension care. Despite a growing body of literature on hypertension in Ethiopia, most studies focus on quantitative data, leaving a significant gap in qualitative insights into patient experiences and perspectives. This study uniquely contributes to the field by exploring the lived experiences of patients in Southern Ethiopia, providing context-specific evidence to inform patient-centered hypertension management strategies. Objective: This qualitative study aimed to explore the experiences and perspectives of patients with hypertension regarding their management and care at a comprehensive hospital in Southern Ethiopia. Methods: A phenomenological approach was employed to capture the experiences and perspectives of participants. In-depth interviews were conducted with 14 patients with hypertension, selected through purposive sampling. The interviews were audio-recorded, transcribed verbatim, and analyzed using OpenCode version 4.02 software to facilitate systematic coding and thematic analysis. Then, key themes and subthemes were identified from the data related to patient experiences and perspectives providing a relevant framework for understanding the complexities of hypertension management from the patients' perspectives. Results: The six key themes emerged, depicting participants' challenges, coping strategies, and interactions with the healthcare system. The themes identified are: adherence to treatment and self-care, awareness of perceived risk and health literacy, experience with the diagnosis, family support in hypertension management, stress awareness and management, and healthcare system and proximity to facilities. Participants noted obstacles to adherence, including long waiting times, forgetting medications, and stress related to their condition. Conclusion and recommendation: The findings highlight the need for specific patient-centered strategies that address the challenges faced by hypertensive patients in Southern Ethiopia, such as reducing wait times, enhancing family involvement in care, increasing adherence, and addressing stress. Strengthening healthcare services is essential for sustainable hypertension management. [ABSTRACT FROM AUTHOR]

Simple Summary: Although the acute phase of cancer treatment has ended, many survivors continue to experience lingering effects that can negatively impact their quality of life for up to 25 years after diagnosis. Approximately three quarters of these individuals encounter long-term sequelae. We investigated the experience of Swiss cancer survivors regarding health-related information and healthcare system. The Swiss healthcare system remains inadequately prepared to support cancer survivors. The current landscape of supportive care is fragmented and lacks a cohesive strategy for systematic needs assessment and tailored care plans. Gaining insights into the experiences and needs of cancer survivors in Switzerland is crucial for the development of comprehensive survivorship guidelines, which are currently lacking. Such guidelines would enhance service integration and promote a holistic approach to cancer care, ensuring that all survivors receive the necessary ongoing support throughout their recovery journey. Background/Objectives: In recent years, the number of cancer survivors has rapidly increased in Switzerland, as well as worldwide. As cancer increasingly becomes a chronic condition, numerous bio-psycho-social and spiritual challenges emerge, leading to significant needs for this population. The aims of this study were to determine the experiences of Swiss cancer survivors with two domains, i.e., health-related information and healthcare systems, and their risk factors, and to see whether these experiences align with the needs identified in the literature. Methods: Data from the cross-sectional multicentred survey Swiss Cancer Patient Experiences were analysed. A total of 1870 adult Swiss cancer survivors were included in the analysis. For each domain, an overall score ranging between 0 (poor experience) and 10 (excellent experience) was constructed including 11 and 10 questions, respectively. The questions that highlighted non-positive experiences by patients were grouped to calculate so-called "problematic" scores for each domain; linear and logistic regressions were conducted to identify the variables influencing these problematic scores needs. Results: The mean overall and "problematic" scores were 7.5 (SD 2.6) and 6.8 (SD 3.2), respectively, for health-related information, and 8.0 (SD 2.4) and 7.0 (SD 3.6), respectively, for the healthcare system. Four variables were found to be associated with the problematic scores: geographical location, foregoing care, self-assessed health, and level of health literacy. Conclusions: Swiss cancer survivors reported problematic experiences in the domains of information and healthcare systems which could lead to unmet needs. The systematic assessment of these needs is recommended to improve patients' experiences and provide more effective and supportive follow-up care. [ABSTRACT FROM AUTHOR]

Background: The effects of the menopause have received a lot of attention in the press recently. Anecdotally, patients report changes in their arthritis around the menopause, either onset or aggravation of symptoms. Clearly, there are hormonal influences on arthritis with the female predominance, onset of RA around times of hormonal change and improvement during pregnancy. We were interested in exploring the patient perspective to inform future research and educational needs. Method: A national survey was organised through the National Rheumatoid Arthritis Society (NRAS), using their database of people with RA and online community who self‐selected as peri menopausal, menopausal or post‐menopausal. A questionnaire was developed by the steering group seeking responses on the effects of the menopause, changes in the arthritis at the time, use of hormone replacement therapy (HRT) and any discussions they had had with their healthcare providers. Free text comments were analysed qualitatively. Results: A total of 779 people responded during September/October 2023. Respondents were 95% Caucasian mainly in their 50s with onset of menopausal symptoms in their 40s. 80% responded that their arthritis was worse during the menopause with 10% being much worse. 47% had taken HRT. Of these, 80% experienced an improvement in their menopausal symptoms and 30% had a moderate or large improvement in their arthritis symptoms. A standout statistic was that 93% of respondents had had no medical discussion about the menopause. For those who did, this was most frequently with the GP in relation to HRT and osteoporosis. 84% of participants felt that the rheumatology team should receive more education and training about the menopause in relation to RA. The qualitative analysis revealed several themes:Discussion about the menopause only occurred if the patient raised it.There was conflicting advice about HRT.There is overlap and confusion of symptoms between RA and the menopause.Participants expressed a perceived link between menopause and onset or deterioration of their arthritis.This study was long overdue. Conclusions: Patients perceive a strong association between the menopause and onset or deterioration of their arthritis, with confusion over what is due to arthritis and what is being caused by the menopause. Patients would like much more discussion about the menopause, but this is not currently happening. They are getting conflicting advice on HRT. Further research is necessary to clarify the impact of the menopause on people with arthritis. [ABSTRACT FROM AUTHOR]

Purpose: Intensive care patients often struggle to communicate due to the technical equipment used for mechanical ventilation and their critical illness. The aim of the study was to achieve a deeper understanding of how mechanically ventilated intensive care patients construct meaning in the unpredictable trajectory of critical illness. Methods: The study was a part of a larger study in which ten patients were video recorded while being in the intensive care. Five patients engaged in interviews about their experiences from the intensive care stay after being discharged and were offered the possibility to see themselves in the video recordings. A narrative, thematic analysis was applied to categorize the patients' experiences from the intensive care. Results: A pattern of shared experiences among intensive care patients were identified. Three main themes capture the patient's experiences: 1) perceiving the intensive care stay as a life-changing turning point, 2) being dependent on and cared for by others, and 3) living with negative and positive ICU experiences. Conclusion: The patients' narratives revealed how being critically ill affected them, and how they understood their experiences in relation to themselves and their surroundings. The results can be used to pose important questions about our current clinical practice. [ABSTRACT FROM AUTHOR]

Personal therapy is a requirement in several psychotherapy-training programs, and more than 80% of therapists have been psychotherapy patients. No quantitative evidence of the effects on their patients' outcomes has been presented. However, qualitative studies and expert experiences highlight the value of therapists having been patients themselves. To investigate this further, we used in-depth qualitative methods to explore the experiences of eight early career psychologists. For our data collection, the participants wrote reflexive notes on two occasions, and met for a full day of focus groups. The notes and transcriptions of the focus groups were analyzed from the perspective of reflexive hermeneutic phenomenology. In all, the therapists had been patients in 19 courses of various psychotherapies. The core experiential themes were: (1) their own suffering had been for real; (2) ambivalence of sharing vulnerability; (3) the significance of experiencing theoretical concepts – the language of psychotherapy – in real life; (4) dealing with shame; (5) the need to know that therapists may become so important that the patient can easily be hurt; and (6) the therapist became an inner model that the patient could use. The therapists seemed to use their psychotherapy experiences in their personal development and professional lives. Therapists may have a unique opportunity to benefit from psychotherapy due to the language they have acquired for sharing experiences with their therapists. [ABSTRACT FROM AUTHOR]

Background: Persons who become life-threateningly ill or injured (due to for example trauma or cardiac arrest) are cared for in hospitals' designated emergency rooms at the emergency department (ED). In these rooms, the life-threatening condition and biomedical focus may reinforce a culture that value the medical-technical care. Meeting patients fundamental care needs (integrating physical, psychosocial and relational care needs) in a person-centred way might hence be challenging in emergency rooms. Little is known about how person-centred fundamental care is experienced and valued by vulnerable and exposed patients in emergency rooms. This study aims to describe fundamental care needs experienced by patients with a life-threating condition in the emergency room. Methods: A descriptive deductive qualitative study with individual interviews were carried out with 15 patients who had been life-threateningly ill or injured and admitted in an emergency room, in Sweden. Data collection was conducted during 2022. Transcribed interviews were analyzed with deductive content analysis, based on the Fundamentals of Care framework. Results: Despite being life-threateningly ill or injured, patients were still able to describe their unique needs—which were not only related to biomedical care. A relationship was established between healthcare professionals and the patient in the initial stage, but not maintained during their stay at the emergency room. Patients felt their physical needs were met to a greater extent than psychosocial and relational needs, despite their prioritizing the latter. Patients preferred personalized care but described care as task oriented. The physical environment limited patients from having their fundamental care needs met, and they adopted to a "patient role" to avoid adding to staff stress. The emergency room situation evoked existential thoughts. Conclusions: This paper provides unique insights into patients' experiences of being cared for in an emergency room. From the patient perspective, physical care was not enough. Relationship, timely and personalized information, and existential needs were identified as essential fundamental care needs, which were not, or only partly met. The finding highlights the need to embed and prioritize fundamental care in practice also for patients who are life-threateningly ill or injured, which in turn calls for focus on organizational prerequisites to enable person-centred fundamental care. [ABSTRACT FROM AUTHOR]

AbstractObjectiveDesignSettingParticipantsResultsConclusion\nKEY POINTSThe objective of this study was to explore patients’ learning and support needs within contemporary diabetes care to help them deal with daily life challenges.A qualitative descriptive design was used following the Consolidated Criteria for Reporting Qualitative Studies. The 15 individual face-to-face interviews were analysed using qualitative content analysis.Participants were drawn from three healthcare centres in rural and urban regions of West Sweden.The study involved 15 patients (8 men, 7 women) with T2DM who experienced contemporary diabetes care.Patients expressed a strong desire for access to person-centred, multidimensional learning, with a focus on genuine partnership, tailored education, and emotional engagement. Digital tools were seen as valuable aids in their self-care efforts. Sub-themes were ‘Desiring genuine partnership and tailored patient education’ and ‘Needing support related to altered perspectives on life and awareness of care standards but with finite care resources’.The findings suggest that integrating person-centred, multidimensional learning strategies into diabetes care could be beneficial, particularly when addressing both practical and emotional needs. Encouraging active patient engagement through flexible digital solutions and providing support for emotional well-being may improve the overall patient experience. However, further research and practical application are needed to fully understand how these strategies could be effectively implemented to support patients with T2DM in managing their daily health challenges.The participants desired multidimensional learning and person-centred care according to their capabilities and needs.The participants wanted to be acknowledged as capable persons who contributed to care when encouraged by professionals.Cross-checking and comparing information from multiple sources are common approaches to consider in future diabetes care.The participants desired multidimensional learning and person-centred care according to their capabilities and needs.The participants wanted to be acknowledged as capable persons who contributed to care when encouraged by professionals.Cross-checking and comparing information from multiple sources are common approaches to consider in future diabetes care. [ABSTRACT FROM AUTHOR]

Abstract Background Opioid maintenance treatment (OMT) saves lives and makes it possible to start a process of health and social rehabilitation. Previous research shows that those who leave OMT after years of a drug free life and a reasonable level of health and social rehabilitation can have a good chance of living a stable drug free life after leaving the treatment. The aim of this study was to gain more knowledge about how patients who were in the process of leaving, or who had left OMT, experienced the leaving process. Methods The study was based on a thematic analysis of transcripts from individual in-depth interviews with 24 patients who had experience with leaving the Norwegian OMT program. Results: The participants in this study had a strong motivation to endure a demanding substitution medication tapering process and leave the OMT program. The tapering benefited strongly from adaptive routines based on ongoing dialog between patients and service providers throughout the process, based on individualized goals and patient experiences each step on the way. The participants had varied experiences regarding the quality and relevance of the support and meeting the need for further treatment and services. Conclusions Given a high level of rehabilitation and good support, this study shows that some OMT program patients are in a good position to successfully leave the OMT program or continue the substitution treatment on a low dosage in a less OMT program-dominated life.

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Amputation is a clinical intervention which can have substantial impacts on the patient's quality of life and wellbeing, and the existing literature demonstrates how adjustment to amputation can be a long process for some patients. However, we know little about how patients are prepared psychologically or emotionally for undergoing amputation surgery. This paper examines the extant literature in relation to preparation for amputation surgery to explore the current knowledge and practices within this area. Through a narrative review (n = 14 studies) we have generated three key themes related to the psychological preparation of patients for amputation surgery; "Emotionality in preparation for surgery," "Information provision and support" and "The role of Health Care Professionals (HCPs) and the multidisciplinary team (MDT) in preparation for surgery." The pre-amputation period is one of great emotion for patients, and information and support is often seen as lacking in relation to preparation. Healthcare professionals, and specifically the MDT were seen as central in helping facilitate the preparation of patients, including delivering the appropriate quality and quantity of information to patients. This review offers insights and direction into how better psychological preparation of the amputation patient could be considered and included in clinical care. Plain language summary: A review of existing studies that look at how patients are psychologically prepared before undergoing amputation surgery Research shows that having an amputation can be a life changing experience for patients and has significant impacts on their health and wellbeing. However, little is known about how patients are psychologically prepared for amputation surgery. This paper reviews existing research about how patients are prepared before having an amputation. This review was carried out to explore what is already known about this topic. 14 relvevant articles were found and reviewed by the authors. There were three main themes: "Emotionality in preparation for surgery," "Information provision and support" and "The role of Health Care Professionals (HCPs) and the multidisciplinary team (MDT) in preparation for surgery." These themes show the key issues related to the psychological preparation of amputation patients. The review shows that the period before amputation surgery is significant and patients can experience high levels of negative emotions such as stress and fear during this time. The articles show that healthcare professionals are key in supporting patients during this time by making sure they provide patients with appropriate information and allowing time for patients to ask questions. The review provides suggestions for how preparation for amputation surgery could be improved. [ABSTRACT FROM AUTHOR]

Aims and Objectives: This study aims to determine the relationship between perceptions of nursing presence and intensive care experiences in adult intensive care unit patients'. Background: Intensive care units (ICUs) are settings where patients have many negative emotions and experiences, which affect both treatment and post‐discharge outcomes. The holistic presence of nurses may help patients turn their negative emotions and experiences into positive ones. Design: A descriptive‐correlational design was used and reported according to the STROBE checklist. Methods: The sample consisted of 182 participants. Data were collected using a personal information form, the Glasgow Coma Scale (GCS), the Intensive Care Experience Scale (ICES), and the Presence of Nursing Scale (PONS). Results: A strong positive correlation existed between total ICES and PONS scores (r = 0.889, p < 0.001). There was a strong positive correlation between PONS total score and ICES subscales (awareness of surroundings (r = 0.751, p < 0.001), frightening experiences (r = 0.770, p < 0.001), recall of experience (r = 0.774, p < 0.001), and satisfaction with care (r = 0.746, p < 0.001)). Males (β = −0.139, p < 0.05), and patients who were university and higher education graduate (β = 0.137, p < 0.05) had higher positive ICU experiences. It was also found length of ICU stay was correlated with ICU experiences and nursing presence. Conclusions: The more positively the patients perceive nurses, the better ICU experiences they have. Gender and education level were found determinants of adult ICU patients' experiences. ICU length of stay predicted what kind of experience patients have and how much they feel the presence of nurses. Relevance to Clinical Practice: Nurses should make their presence felt completely and holistically by using their communication skills for patients have more positive intensive care experiences. Nurses should consider variables which affects patients' ICU experiences and nursing presence. [ABSTRACT FROM AUTHOR]

AbstractObjectiveDesignStudy SampleResultsConclusionUp to 10% of adults seeking hearing healthcare for significant hearing concerns have diagnostic test results that indicate normal hearing. Knowledge of the interactions between patients with unexplained hearing concerns and hearing healthcare providers is minimal. In this study, we explored what themes emerged when individuals with unexplained hearing concerns discuss their experiences seeking hearing healthcare.We employed a prospective, cross-sectional qualitative design with semi-structured interviews.Fifteen adults who had sought professional hearing evaluations in the United States due to hearing concerns but had audiological testing that indicated hearing within normal limits, and no other medical explanation for their hearing concerns participated in the study. Saturation of themes was reached by Interview #2, suggesting sufficient sampling.Thematic analysis revealed 3 themes from the interviews: (1) dismissive healthcare providers, (2) misalignment of patient concerns and assessment protocols, and (3) doctor shopping.These findings highlight the need for improved care for patients with unexplained hearing concerns. Clinicians could help improve care provision for patients with unexplained hearing concerns, despite a lack of professional guidance on diagnostic tests or treatment recommendations, by soliciting, listening to, and trusting patient experiences as they seek support for their hearing concerns. [ABSTRACT FROM AUTHOR]

Background: CRS/HIPEC patients face unique quality of life (QoL) challenges due to advanced disease (peritoneal carcinomatosis), the extent of procedure, and risk for long-term complications. Standard QoL questionnaires are generic, focusing on tumor type and standard treatments, and likely do not capture this select population's full experience, suggesting the need for tailored instruments. We aimed to characterize the QoL challenges faced by CRS/HIPEC cancer survivors and determine whether these were captured by a standard QoL questionnaire. Patients and Methods: An anonymous, semi-structured individual interview was conducted with CRS/HIPEC patients addressing their experience at diagnosis, challenges related to CRS/HIPEC, and access to CRS/HIPEC information. Verbatim transcripts were interpreted using thematic analysis. Code and theme identification was inductive. Questions addressing common themes that were not encompassed by a standard QoL questionnaire were developed. Results: We interviewed eight patients. Median age was 55 (range 30–71) years and 75% (n = 6) were women. Primary tumor sites included appendix (n = 4), ovarian (n = 3), and peritoneal mesothelioma (n = 1). Median time from CRS/HIPEC was 40.1 (range 3.1–216.3) months. Overall, 133 codes were identified and categorized into 9 themes. The most recurring were physical symptoms after CRS/HIPEC (specifically gastrointestinal symptoms), adjusting to survivorship, mental health, expectations from CRS/HIPEC, and access to care. A total of 22 questions that did not overlap with a standardized QoL questionnaire were developed. Conclusions: There is an unmet need to understand the unique QoL challenges CRS/HIPEC patients encounter. Patient-centered QoL questionnaires based on CRS/HIPEC patient experiences can capture these unique challenges and help guide future studies and care. [ABSTRACT FROM AUTHOR]

Introduction: The global healthcare landscape has been profoundly affected by the COVID-19 pandemic. This study aimed to investigate the changes and challenges experienced by orthodontic patients in Poland during this unprecedented time. Materials and methods: An anonymous online survey conducted through Google Forms reached 205 orthodontic patients in Poland. Statistical analyses, including Fisher's exact test, were used to explore relationships between variables, and the strength of associations was measured using Cramer's V. Results: The primary concerns among patients were heightened treatment costs and extended duration, rather than the fear of infection during orthodontic visits. Nearly all respondents (96.6%) relied on phone calls for communication with their orthodontic offices. Among the participants, 65% reported experiencing appliance failures, predominantly bracket issues rather than arch failures. Notably, 72.8% of patients with orthodontic appliance failures felt unable to resolve the problems themselves. The study revealed a significant correlation between patients' age and adherence to the principle of vaccination (pFisher < 0.05). Approximately 26.3% of participants acknowledged increased muscle tension and headaches during the COVID-19 outbreak. Additionally, 29.3% strongly agreed and 19% agreed that the pandemic adversely affected their emotional well-being. Surprisingly, over 80% expressed willingness to undergo orthodontic treatment, even with the knowledge of the potential occurrence of the COVID-19 pandemic. Conclusions: The study highlights the significant impact of the COVID-19 pandemic on the emotional health of orthodontic patients in Poland. It provides valuable insights that can inform future strategies for orthodontic care delivery during public health crises. [ABSTRACT FROM AUTHOR]

Introduction: The impact of multiple health conditions on bowel cancer screening is currently unknown. We explored the impact of multiple health conditions on bowel cancer screening perceptions, experience and clinical management decisions following a positive stool test. Methods: Semi‐structured qualitative interviews were conducted remotely with Bowel Screening Wales staff (n = 16) stratified by regional location and role and with screening participants (n = 19) stratified by age, gender and comorbidity. Interview topics were guided by the Common‐Sense Model. Results: Screening participants, regardless of comorbidity status, placed great emphasis on the importance of early detection of cancer and completing the bowel screening process. Screening staff emphasised comorbidities in the clinical decision‐making process; however, screening participants had low awareness of the impact that comorbidities can have on bowel screening. Participants describe how the presence of multiple health conditions can mask potential bowel symptoms and influence beliefs about follow‐up. Conclusion: Bowel screening staff try to individualise the service to meet participant needs. The potential mismatch in screening staff and participant awareness and expectations of the bowel screening and diagnostic process needs to be addressed. Clearer and more regular communication with screening participants could support the screening process, particularly for those with significant coexisting health conditions or facing time delays. The possible masking effects and misattribution of symptoms because of comorbidities highlight an opportunity for education and raising awareness for screening participants and a potential area of focus for discussions in clinical consultations and staff training. Patient and Public Contribution: Project funding included costs for patients and public contributors to be compensated for their contributions to the project, in line with current standards. A patient and public contributor was involved in the design of the study, including protocol development, and the interpretation of key findings and implications for patients, which are subsequently reflected within the manuscript. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic was highly disruptive for people delivering babies in-hospital and for obstetrical healthcare professionals. The purpose of this study was to explore the experiences of people with or without COVID-19 giving birth in a community-based hospital to provide patient insight to obstetrical care providers regarding the services/policies used during the pandemic. Nine interviews were conducted with participants within six months of giving birth in-hospital – four who tested positive for COVID-19 and five who tested negative. Seven themes were identified in the analysis: conflicting emotions; experiences of COVID-related protocols; altered experiences of pregnancy and birth; other aspects of in-hospital care; support from family and friends; interactions and communications with the healthcare team; and seeking information. Results were positively received by the perinatal clinical team and changes were identified to further improve experiences of care. A deeper understanding of patients' lived experiences of hospital services available during public health emergencies can offer important, actionable information for healthcare providers.

Background and purpose: Cancer may create problems and needs associated with impaired quality of life (QoL). The first health care encounter is important to enable patients to cope and may ultimately impact QoL. The aim of this study was to describe the patients’ experiences of encounters with health care professionals. Another aim was to explore the possible impact that the encounters may have on QoL 1 year after a colon cancer diagnosis. We also wanted to investigate whether patients had received information about treatment related side-effects. Patients and methods: This substudy within the QoLiCOL (Quality of Life in COLon cancer) study included 1687 patients (male n = 876, female n = 811, mean age 71) between 2015 and 2019. Questionnaires were answered at diagnosis and after 1 year. QoL was self-assessed with a seven-point Likert scale. Analyses were performed using descriptive statistics and ordinal logistic regression. Results: A total of 1,550 patients (91.9%) reported feeling well received by health care professionals. We found no statistically significant association with QoL. Patients (87%) reported feeling well informed about their treatment, but few patients recalled having received information regarding potential side effects on bowel or sexual function. Interpretation: Patients with colon cancer generally had a positive experience of the encounter with health care where they felt both well received and well informed. However, the amount of relevant information received was scarce. This indicates that it may be difficult to identify whether patients are properly informed prior to treatment for colon cancer only by asking if they feel well informed.

Abstract Background Patient experience is an important indicator of the quality of healthcare. Patients with multimorbidity often face adverse health outcomes and increased healthcare utilisation. General practitioners play a crucial role in managing these patients. The main aim of our study was to perform an in-depth assessment of differences in patient-reported experience with general practice between patients living with chronic conditions and multimorbidity, and those with no chronic conditions. Methods We performed secondary analyses of a national survey of patient experience with general practice in 2021 (response rate 41.9%, n = 7,912). We described the characteristics of all survey respondents with no, one, two, and three or more self-reported chronic conditions. We assessed patient experience using four scales from the Norwegian patient experience with GP questionnaire (PEQ-GP). These scales were used as dependent variables in bivariate and multivariate analyses and for testing the measurement model, including confirmatory factor analysis and a multigroup CFA to assess measurement invariance. Sentiment and content analysis of free-text comments was also performed. Results Patients with chronic conditions consistently reported lower scores on the GP and GP practice experience scales, compared to those without chronic conditions. This pattern persisted even after adjustment for patient background variables. The strongest associations were found for the scale of “Enablement”, followed by the scales of “GP” and “Practice”. The subscale “Accessibility” did not correlate statistically significantly with any number of chronic conditions. The analysis of free-text comments echoed the quantitative results. Patients with multimorbidity stressed the importance of time spent on consultations, meeting the same GP, follow-up and relationship more often than patients with no chronic conditions. Our study also confirmed measurement invariance across patients with no chronic conditions and patients with multimorbidity, indicating that the observed differences in patient experience were a result of true differences, rather than artifacts of measurement bias. Conclusions The findings highlight the need for the healthcare system to provide customised support for patients with chronic conditions and multimorbidity. Addressing the specific needs of patients with multimorbidity is a critical step towards enhancing patient experience and the quality of care in general practice.

Abstract Background There are increasing publications on meaningful collaboration between researchers and patient research partners (PRPs), but fewer publications of such work from the PRP perspective using an evaluation framework. Our aim is to present our own perspectives and reflections on meaningful collaboration as PRPs working on a qualitative research study. Main body We were part of a study team that comprised of PRPs, clinicians and academic researchers, and was led by a PRP. The team designed and conducted a qualitative study aimed at understanding how patients make decisions around tapering of biologics for inflammatory bowel disease. The study was conducted online. The PRP lead was trained in qualitative methodology through a one-year certificate program called Patient and Community Engagement Research offered through the University of Calgary Continuing Education. We had received patient-oriented research training and qualitative research training prior to this project. Team members were assigned tasks by our group lead based on member interests and willingness. Some group members were part of the Strategy for Patient-Oriented Research, Inflammation, Microbiome, and Alimentation: Gastro-Intestinal and Neuropsychiatric Effects Network, one of five chronic disease networks in the Strategy for Patient Oriented Research initiative of the Canadian Institutes of Health Research. We describe the five key ingredients to successful collaboration based on our experiences and reflections utilizing the Experience-Reflection-Action Cycle as our framework. The five key ingredients that we identified were: inclusiveness, goal and role clarity, multi-level training and capacity building, shared decision making, and a supportive team lead. Conclusion Overall, our experience was positive. With successful collaboration came an increased level of trust, commitment and performance. There is a need for more studies with diverse PRPs in different settings to validate and/or identify additional factors to improve collaboration in patient-oriented research.

Samar Attieh,1 Kelley Kilpatrick,2 Denis Chênevert,3 Marie-Pascale Pomey,4– 6 Carmen G Loiselle7– 9 1Department of Experimental Medicine, Faculty of Medicine and Health Sciences, McGill University, Montréal, QC, Canada; 2Susan E. French Chair in Nursing Research and Innovative Practice, Ingram School of Nursing, Faculty of Medicine and Health Sciences, McGill University, Montréal, QC, Canada; 3Department of Human Resources Management, HEC Montréal, Montréal, QC, Canada; 4Research Centre of the University of Montreal Hospital Centre, Montréal, QC, Canada; 5Centre d’excellence sur le partenariat avec les patients et le public, Montréal, QC, Canada; 6Department of Health Policy, Management and Evaluation, School of Public Health, University of Montréal, Montréal, QC, Canada; 7Ingram School of Nursing, Faculty of Medicine and Health Sciences, McGill University, Montréal, Canada; 8Department of Oncology, Faculty of Medicine and Health Sciences, McGill University, Montréal, Canada; 9Segal Cancer Center, Jewish General Hospital, Montréal, CanadaCorrespondence: Samar Attieh, Department of Experimental Medicine, Faculty of Medicine and Health Sciences, McGill University, 550 Sherbrooke Street West, West Towers, Suite 775, Montréal, QC, H3A 1B9, Canada, Email samar.attieh@mail.mcgill.caBackground: In a public health crisis such as COVID-19, cancer teams face significant challenges including acute work disruptions, rapid shifts in clinical practice, and burnout. Within this context, it is crucial to explore team functioning from the perspectives of multiple stakeholders.Objective: This quantitative pilot study aimed to 1) measure perceptions of multi-stakeholders on key indicators of team functioning (Team Effectiveness, TE, and Team Relational Coordination, TRC) during COVID-19 and its transition, and 2) document whether patient perceptions of TE/TRC are significantly associated with their cancer care experiences.Methods: A descriptive design with repeated measures was used. Through convenience sampling, participants were recruited from two outpatient cancer clinics at a large university-affiliated hospital, in Montréal, Qc, Canada. Sixty-six participants (ie, 13 healthcare professionals, 40 patients, 6 informal caregivers, and 7 volunteers) completed e-measures at T1 (years 2021– 2022) and n = 44 at T2 (year 2023).Results: At T1, participants reported high perceptions of Team Effectiveness (scale 1 to 6) M = 4.47; SD = 0.7 (Mdn = 4.54; IQR: 4.06– 5) and Relational Coordination (scale 1 to 5) M = 3.77; SD = 0.77 (Mdn = 3.81; IQR: 3.12– 4.38) with no significant differences in perceptions across the four groups. At T2, no significant changes in TE/TRC perceptions were found. At both time points, patient perceptions of TE/TRC were significantly correlated with positive cancer care experiences (Spearman rank correlation rs ranging from 0.69 and 0.83; p < 0.01).Conclusion: To our knowledge, this is the first study documenting perceptions of cancer team functioning amidst the pandemic as reported by multiple stakeholders. Significant relationships between patient perceptions of TE/TRC and their cancer care experiences underscore the importance of including patients’ views in team functioning processes. Future work should rely on larger sample sizes to further explore key elements of optimal team functioning.Keywords: team functioning, team effectiveness, team relational coordination, cancer care, patient satisfaction, patient experiences, COVID-19, pandemic, health crisis

Background: Patient experience is an important indicator of the quality of healthcare. Patients with multimorbidity often face adverse health outcomes and increased healthcare utilisation. General practitioners play a crucial role in managing these patients. The main aim of our study was to perform an in-depth assessment of differences in patient-reported experience with general practice between patients living with chronic conditions and multimorbidity, and those with no chronic conditions. Methods: We performed secondary analyses of a national survey of patient experience with general practice in 2021 (response rate 41.9%, n = 7,912). We described the characteristics of all survey respondents with no, one, two, and three or more self-reported chronic conditions. We assessed patient experience using four scales from the Norwegian patient experience with GP questionnaire (PEQ-GP). These scales were used as dependent variables in bivariate and multivariate analyses and for testing the measurement model, including confirmatory factor analysis and a multigroup CFA to assess measurement invariance. Sentiment and content analysis of free-text comments was also performed. Results: Patients with chronic conditions consistently reported lower scores on the GP and GP practice experience scales, compared to those without chronic conditions. This pattern persisted even after adjustment for patient background variables. The strongest associations were found for the scale of "Enablement", followed by the scales of "GP" and "Practice". The subscale "Accessibility" did not correlate statistically significantly with any number of chronic conditions. The analysis of free-text comments echoed the quantitative results. Patients with multimorbidity stressed the importance of time spent on consultations, meeting the same GP, follow-up and relationship more often than patients with no chronic conditions. Our study also confirmed measurement invariance across patients with no chronic conditions and patients with multimorbidity, indicating that the observed differences in patient experience were a result of true differences, rather than artifacts of measurement bias. Conclusions: The findings highlight the need for the healthcare system to provide customised support for patients with chronic conditions and multimorbidity. Addressing the specific needs of patients with multimorbidity is a critical step towards enhancing patient experience and the quality of care in general practice. [ABSTRACT FROM AUTHOR]

Introduction: When older persons with dementia are admitted to hospital, they often feel disoriented and confused and their cognitive impairment may worsen, purely due to the sudden change in their environment. As such hospital design is recognised as an important aspect in the care and well‐being of older persons with dementia. As the number of persons with dementia is increasing, the experience of admission to a hospital with, for example, single rooms is more relevant than ever. Aim and Methods: This scoping review aimed to identify, explore and conceptually map the literature reporting on what older people with dementia and their families experienced during admission to a hospital with single room accommodation. We followed the Joanna Briggs Institute recommendations for undertaking a scoping review. In addition, we used the Preferred Reporting Items for Systematic reviews (PRISMA‐ScR) Checklist, which assisted the development and reporting of this scoping review. Results: We included 10 sources within a time frame of 23 years (1998–2021). The sources originate from Europe, Australia and Canada. We identified three conceptual maps: Safety and security, Privacy and dignity and Sensorial stimulation. Our review demonstrates that the themes of the three conceptual maps are experienced as mutually interdependent for the older persons with dementia and their families. Conclusion: We conclude that it is not merely the single room design that determines what the older persons with dementia and their families experience as important; the exposure to sensorial stimulation and the presence of well‐trained staff taking a dignified patient‐centred approach are also crucial for their experience of high‐quality nursing care. [ABSTRACT FROM AUTHOR]

In the UK, almost 1 million people are living with heart failure, with heart and circulatory diseases accounting for 27% of all deaths, according to the British Heart Foundation. Current heart failure guidelines support cardiac rehabilitation as an intervention to reduce cardiovascular events, increase exercise tolerance and enhance patients' quality of life. Research indicates that telerehabilitation is an effective component of heart failure management, which helps overcome perceived barriers to cardiac rehabilitation including travel to appointments, long waiting times and accessibility. Understanding patient experiences and increasing telerehabilitation among heart failure patients is pertinent to implementing person-centred care, reducing risk and optimising quality of life. [ABSTRACT FROM AUTHOR]

ObjectiveMethodsResultsConclusionThis qualitative study explores patients’ experiences of psychotherapy, focusing on elements perceived as helpful or unhelpful and suggestions for improvement in the context of public mental health care.A total of 148 adults (Mean age = 32.24, SD = 9.92) who had been or are currently receiving psychological treatment from the National Health Service (NHS) responded to an online survey. The survey included open-ended questions regarding their experiences of psychotherapy, asking them to identify helpful or unhelpful aspects, and suggestions for improvement. Using thematic analysis, key themes were identified.The analysis highlighted the patient’s preference for personalized treatment, the importance of therapeutic alliance, the demand for depth in therapy, and life skills and agency as therapeutic outcomes. Participants suggested improvements such as more tailored approaches and stronger therapist-patient relationships, supporting an adaptable, patient-centered model.The study highlights challenges in public mental health services where patients might feel their specific needs are not being recognized and met and underscores the importance of personalized treatment plans that satisfy and evolve with patient needs, suggesting that therapists must be attentive and responsive to individual desires to enhance the patient experience. [ABSTRACT FROM AUTHOR]

Background: There are increasing publications on meaningful collaboration between researchers and patient research partners (PRPs), but fewer publications of such work from the PRP perspective using an evaluation framework. Our aim is to present our own perspectives and reflections on meaningful collaboration as PRPs working on a qualitative research study. Main body: We were part of a study team that comprised of PRPs, clinicians and academic researchers, and was led by a PRP. The team designed and conducted a qualitative study aimed at understanding how patients make decisions around tapering of biologics for inflammatory bowel disease. The study was conducted online. The PRP lead was trained in qualitative methodology through a one-year certificate program called Patient and Community Engagement Research offered through the University of Calgary Continuing Education. We had received patient-oriented research training and qualitative research training prior to this project. Team members were assigned tasks by our group lead based on member interests and willingness. Some group members were part of the Strategy for Patient-Oriented Research, Inflammation, Microbiome, and Alimentation: Gastro-Intestinal and Neuropsychiatric Effects Network, one of five chronic disease networks in the Strategy for Patient Oriented Research initiative of the Canadian Institutes of Health Research. We describe the five key ingredients to successful collaboration based on our experiences and reflections utilizing the Experience-Reflection-Action Cycle as our framework. The five key ingredients that we identified were: inclusiveness, goal and role clarity, multi-level training and capacity building, shared decision making, and a supportive team lead. Conclusion: Overall, our experience was positive. With successful collaboration came an increased level of trust, commitment and performance. There is a need for more studies with diverse PRPs in different settings to validate and/or identify additional factors to improve collaboration in patient-oriented research. Plain English Summary: There are an increasing number of publications on collaborative research work between researchers and patient research partners but fewer publications of such work from the patient research partner perspective. We share our experiences, reflections and the key factors for successful collaboration as two patient research partners on a research team led by a patient research partner trained in qualitative methodology through a one-year certificate program called Patient and Community Engagement Research offered through the University of Calgary Continuing Education. We had a positive overall experience and contributed as equal partners on the project, influencing many of the project decisions. Inclusiveness, goal and role clarity, multi-level training and capacity building, shared decision making, and a supportive team lead contributed to the feeling of empowerment and satisfaction. Our results indicate that with successful collaboration comes an increased level of trust, commitment and performance. There is a need for more studies with diverse patient research partners in different settings to validate and/or identify additional factors to improve collaboration in patient-oriented research. [ABSTRACT FROM AUTHOR]

Background: Few studies have examined patient experiences of the Patient Centred Medical Home (PCMH). This qualitative study explores the experiences of patients of an urban Aboriginal Community Controlled Health Service during its transition to a model of a PCMH. Methods: Twenty-eight community members who were registered as patients of an urban Aboriginal Community Controlled Health Service were purposively recruited to participate in yarning interviews. Yarns were conducted using a guide containing open-ended questions in the same domains as those used in patient satisfaction surveys at the participating clinic. Data from yarns were analysed by Aboriginal and non-Indigenous researchers using thematic analysis. The interpretations of Aboriginal and Torres Strait Islander researchers were privileged in the analysis. Results: Key themes highlighted the importance of relationships, connectedness, and personal growth and empowerment to community members' health and wellbeing, which they described as a journey of healing and recovery. Delays in implementing a process to empanel patients in a care team meant that most community members were unaware a PCMH had been implemented. However, community members commonly reported a more welcoming environment, more contact with the same doctor and more involvement of Aboriginal Health Workers in their care. Conclusions: Aboriginal and Torres Strait Islander community members' narratives of their experiences bear evidence of the acceptability of a PCMH model for delivery in Aboriginal Community Controlled Health Services to improve relational care between patients and health staff. A patient-directed empanelment process has been implemented to better connect patients to their care team in the clinic, and the role of the Aboriginal Health Worker reshaped to strengthen connections between patients and their care team in and outside the clinic. The Patient Centred Medical Home (PCMH) aims to deliver primary healthcare based on what matters most to patients and their families.This study addressed the lack of published research i examining implementation of this model of care in Aborignal Community Controlled Health Services. The PCMH was acceptable to Aboriginal and Torres Strait Islander patients and strengthened their relationships with health care providers. This provides an acceptable model of primary health care for other Aboriginal Community Controlled Health Services, with flexbility for tailoring to local context.. [ABSTRACT FROM AUTHOR]

Aim: To explore patients' experiences of shared decision‐making, in nursing care during their stay in a healthcare institution. Design: This study employed a qualitative descriptive design. Methods: Twenty participants were interviewed from two rehabilitation centres, a nephrology ward of a hospital, and a rehabilitation ward of a long‐term care facility. A constant comparative method was used for the inductive analysis. Results: The main theme was 'feeling seen and understood', in the context of person‐centred care, which served as the unifying thread across five themes. The five themes included the importance of a positive nurse–patient relationship as a foundation for shared decision‐making. Next, patients experienced collaboration, and this was influenced by verbal and non‐verbal communication. Another theme was that patients often felt overwhelmed during their stay, affecting shared decision‐making. The fourth theme was that many decisions were not made through the shared decision‐making process but were still perceived as satisfactory. The final theme highlighted patients' perspectives on their role in decision‐making and influencing factors. Conclusion: Patients describe how feeling seen and understood is a prerequisite for shared decision‐making as a part of person‐centred care. For nurses, this implies that they should focus on aspects such as building a good relationship and acknowledgement of patients' feelings and circumstances, next to empowering patients to feel knowledgeable and valued. This way patient's motivation to participate in shared decision‐making will be enhanced. Reporting Method: Following the EQUATOR guidelines, reporting was guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ). Patient or Public Contribution: Patients were involved in the study through interviews during the research process and member checks during analysis. Implications for the profession and/or patient care: Before initiating shared decision‐making processes, prioritise making the patient feel seen and understood. Be mindful that patients often feel overwhelmed during their stay. Use a person‐centred approach to make patients feel knowledgeable—this empowers them for shared decision‐making. Impact: Research on patients' experiences of shared decision‐making in nursing care is limited, yet crucial for understanding patients' needs in shared decision‐making. This study highlights patients' perceptions that shared decision‐making is best facilitated within the nurse–patient relationship by nurses who primarily focus on ensuring that patients feel acknowledged and understood. [ABSTRACT FROM AUTHOR]

Introduction and objective: Autologous hematopoietic stem cell transplantation (aHSCT) is a promising treatment option for persons with multiple sclerosis (pwMS). Patients undergoing aHSCT face unique challenges in all aspects of life. In this study, we explored the lived experiences of pwMS undergoing aHSCT. Methods: Semi-structured interviews of 12 pwMS treated with aHSCT were conducted using a maximum variation sampling strategy. Interviews were transcribed verbatim and analyzed thematically using inductive and deductive categories. Results: Three major themes were identified: (1) preparing for aHSCT, (2) experiencing the procedure, and (3) post-treatment time. A difficult decision-making process, organizational effort, and funding difficulties characterized the preparation for transplantation. AHSCT was seen as a life-changing event accompanied by both psychological and physical stress, with an associated feeling of regaining control. The transplantation had a lasting positive effect on the lives of the interviewed pwMS. However, the early post-treatment time was characterized by successes and failures alike. Particularly the independently organized medical aftercare was perceived as challenging. Retrospective revaluation has led most pwMS to wish for earlier information provision about the treatment option of aHSCT during their treatment history. Conclusion: AHSCT had a clear impact on patients’ physical and psychosocial health, influencing their perception of life and its quality. Assessing and attending to unmet needs of patients before, during, and after transplantation may positively influence their experience of aHSCT. [ABSTRACT FROM AUTHOR]

Background:Telehealth can help increase rural health care access. To ensure this modality is accessible for rural patients, it is necessary to understand rural patients' experiences with telehealth. Objectives of this scoping review were to explore how rural patients' telehealth experiences have been measured, assess relevant research, and describe rural telehealth patient experiences. Methods:We searched five databases for articles published from 2016 through 2022. Primary research reports assessing rural adult patient experiences with synchronous video telehealth in the United States in any clinical area were included. Data collected pertained to study characteristics and patient experience assessment characteristics and outcomes. Quality of included studies was assessed using the Quality Assessment with Diverse Studies tool. Review findings were presented in a narrative synthesis. Results:There were 740 articles identified for screening, and 24 met review inclusion criteria. Most studies (70%, n = 16) assessed rural telehealth patient experience using questionnaires; studies employed interviews (n = 11) alone or in combination with surveys. The majority of surveys were study developed and not validated. Quantitative patient experience outcomes fell under categories of patient satisfaction, telehealth care characteristics, patient–provider rapport, technology elements, and access. Qualitative themes were most often presented as telehealth benefits or facilitators, and drawbacks or barriers. Conclusions:Available research indicates positive patient experiences with rural telehealth services. However, study weaknesses limit generalizability of findings. Future research should apply established definitions for participant rurality and clearly group samples by rurality. Efforts should be made to use validated telehealth patient experience measures. [ABSTRACT FROM AUTHOR]

People with advanced cancer and cachexia experience significant body weight loss, adversely impacting physical function and quality of life (QOL). Effective, evidence-based treatments for cancer cachexia are lacking, leaving patients with unmet needs. Exercise holds promise to improve patient QOL. However, information on patients’ experiences of exercise, including their ability to cope with structured exercise, is limited. Purpose: To explore patient experiences completing a structured, supervised exercise program for people with cachexia due to advanced cancer. Methods: Semi-structured interviews were conducted with participants enrolled in a phase II feasibility, randomized controlled trial to explore their experiences of an 8-week virtually supervised exercise program delivered via videoconference technology. Interviews were analysed using reflexive thematic analysis. Results: Seventeen participants completed interviews (female n = 9, 53%). Main interview themes included the following: (1) Deciding to exercise involves balancing concerns and expectations, (2) the exercise program is a positive experience, and (3) moving forward after the exercise program. While some participants initially held doubts about their physical capabilities and exercise safety, most wanted to exercise to enhance their wellbeing. Participants described the exercise program as a positive experience, offering diverse benefits. Some would have preferred in-person exercise, but all agreed the virtual format increased convenience. Participants emphasized the need to recommend the program to others in similar circumstances. They underscored the necessity and desire for ongoing support to sustain their new exercise habits. Conclusion: Based on patient experiences, virtually supervised exercise programming appears to be feasible and meaningful to people with advanced cancer and cachexia. [ABSTRACT FROM AUTHOR]

Patient journey mapping is an emerging field of research that uses various methods to map and report evidence relating to patient experiences and interactions with healthcare providers, services, and systems. This research often involves the development of visual, narrative, and descriptive maps or tables, which describe patient journeys and transitions into, through, and out of health services. This methods corner paper presents an overview of how patient journey mapping has been conducted within the health sector, providing cardiovascular examples. It introduces six key steps for conducting patient journey mapping and describes the opportunities and benefits of using patient journey mapping and future implications of using this approach. [ABSTRACT FROM AUTHOR]

Diabetes can be an arduous journey both for people with diabetes (PWD) and their caregivers. While the journey of every person with diabetes is unique, common themes emerge in managing this disease. To date, the experiences of PWD have not been fully considered to successfully implement the recommended standards of diabetes care in practice. It is critical for health-care providers (HCPs) to recognize perspectives of PWD to achieve optimal health outcomes. Further, existing tools are available to facilitate patient-centered care but are often underused. This statement summarizes findings from multistakeholder expert roundtable discussions hosted by the Endocrine Society that aimed to identify existing gaps in the management of diabetes and its complications and to identify tools needed to empower HCPs and PWD to address their many challenges. The roundtables included delegates from professional societies, governmental organizations, patient advocacy organizations, and social enterprises committed to making life better for PWD. Each section begins with a clinical scenario that serves as a framework to achieve desired health outcomes and includes a discussion of resources for HCPs to deliver patient-centered care in clinical practice. As diabetes management evolves, achieving this goal will also require the development of new tools to help guide HCPs in supporting PWD, as well as concrete strategies for the efficient uptake of these tools in clinical practice to minimize provider burden. Importantly, coordination among various stakeholders including PWD, HCPs, caregivers, policymakers, and payers is critical at all stages of the patient journey. [ABSTRACT FROM AUTHOR]

Abstract Background Black women and people with uteri have utilized collectivistic and relational practices to improve health outcomes in the face of medical racism and discrimination for decades. However, there remains a need for interventions to improve outcomes of uterine fibroids, a condition that disproportionately impacts Black people with uteri. Leveraging personalized approaches alongside evidence that demonstrates the positive impact of social and peer support on health outcomes, we adapted from CenteringPregnancy, an evidence based group prenatal care intervention, for the education and empowerment of patients with uterine fibroids. Methods The present report provides an overview of the study design and planned implementation of CPWF in cohorts at Boston Medical Center and Emory University / Grady Memorial Hospital. After receiving training from the Centering Healthcare Institute (CHI), we adapted the 10-session CenteringPregnancy curriculum to an 8-session hybrid group intervention called Centering Patients with Fibroids (CPWF). The study began in 2022 with planned recruitment of six cohorts of 10-12 participants at each institution. We will conduct a mixed methods evaluation of the program using validated survey tools and qualitative methods, including focus groups and 1:1 interviews. Discussion To date, we have successfully recruited 4 cohorts at Boston Medical Center and are actively implementing BMC Cohort 5 and the first cohort at Emory University / Grady Memorial Hospital. Evaluation of the program is forthcoming.

Abstract Background Living in rural areas is a major contributor of health inequity. Tackling health inequity is important for primary care physicians. Therefore, it is important to compare the quality of primary care between rural and urban areas. To the best of our knowledge, this is the first study to examine the association between rurality and patient experience (PX) in Japan using validated measures. Methods This cross-sectional study was conducted using online surveys. Participants were selected using a stratified random sample based on sex and age. The Japanese version of the Person-Centered Primary Care Measure (PCPCM) was used as an indicator of PX. We used the Rurality Index for Japan (RIJ) to measure rurality. Furthermore, we used multivariate linear regression analysis to examine the relationship between the RIJ and PCPCM after adjusting for confounders. Results Of the 1112 eligible participants, 800 responded to the survey (response rate:71.9%). The mean PCPCM scores were 2.46 (standard deviation: 0.73) and median RIJ was 15 (interquartile range: 6–33). The crude and adjusted coefficients of rurality were − 0.02 (− 0.006–0.001, p = 0.114) and − 0.02 (− 0.005–0.001), respectively, demonstrating that rurality was not significantly associated with the total PCPCM score. Subgroup analyses were similar to the main analyses. Conclusion We found that PX in primary care did not differ by rurality in the general Japanese population.

Abstract Background Genetic diagnosis is often understood as a single event within the care pathway of rare disease patients. Legal, policy and ethical scholarship focusing on rare diseases and genetic information discusses questions of how to best deal with the process of genetic diagnosis and the communication of genetic information within a given health system. We co-created a research design with rare disease patients and their families in Austria to explore in-depth the experiences of genetic diagnosis for people affected by rare diseases. Our objective was to trace the whole pathway of genetic testing and understand how rare disease patients experience genetic diagnosis as part of their care pathway in the healthcare system. Results Data was collected through in-depth semi-structured qualitative interviews with 14 patients with a suspected or diagnosed rare disease or their parents, focusing on their perception of the pathway of genetic diagnosis in Austria. This pathway included the initial triggering of genetic diagnosis, the process of testing and its immediate (communication of results, counselling) and long-term, wider aftermath. Patients missed a clear link to already established forms of care such as their primary care/treating physicians. They also advocate for an integrated and interdisciplinary care pathway. Conclusions Our study underscores the importance of a continuous care and communication pathway spanning from the initial genetic diagnosis process to post-test phases. It further shows the importance of exploring patients’ perspectives through qualitative research methods to understand the intricate workings of public health policies and tools. Integrating genetic diagnosis into a broader care trajectory is crucial for a holistic approach to care for rare disease patients who often rely on regular interactions with the healthcare system. Achieving this holistic approach requires collaboration between experts in specific rare disease areas, primary care physicians, and support networks.

Background: Living in rural areas is a major contributor of health inequity. Tackling health inequity is important for primary care physicians. Therefore, it is important to compare the quality of primary care between rural and urban areas. To the best of our knowledge, this is the first study to examine the association between rurality and patient experience (PX) in Japan using validated measures. Methods: This cross-sectional study was conducted using online surveys. Participants were selected using a stratified random sample based on sex and age. The Japanese version of the Person-Centered Primary Care Measure (PCPCM) was used as an indicator of PX. We used the Rurality Index for Japan (RIJ) to measure rurality. Furthermore, we used multivariate linear regression analysis to examine the relationship between the RIJ and PCPCM after adjusting for confounders. Results: Of the 1112 eligible participants, 800 responded to the survey (response rate:71.9%). The mean PCPCM scores were 2.46 (standard deviation: 0.73) and median RIJ was 15 (interquartile range: 6–33). The crude and adjusted coefficients of rurality were − 0.02 (− 0.006–0.001, p = 0.114) and − 0.02 (− 0.005–0.001), respectively, demonstrating that rurality was not significantly associated with the total PCPCM score. Subgroup analyses were similar to the main analyses. Conclusion: We found that PX in primary care did not differ by rurality in the general Japanese population. [ABSTRACT FROM AUTHOR]

The aim of this study was to describe adult patients' experiences of postoperative care in the postanesthesia care unit (PACU) after undergoing surgery in Sweden. Qualitative inductive study. Individual interviews with 14 adults who had experience of being cared for in the PACU were conducted on day 14 to day 26 after surgery. The interviews were analyzed using thematic analysis. Early recovery in the PACU was described as a small step in the recovery process and as a time of transition from surgery to the ward. When patients perceived the PACU staff as competent, and as having a positive attitude, providing individualized care, and addressing symptoms or discomfort without being specifically alerted, patients felt safe and cared for. When they were not personally acknowledged, the patients felt abandoned in the highly technological environment. To enhance the transition from surgery to the ward, patients need to be personally acknowledged. Their symptoms need to be properly treated by competent staff with a positive and proactive attitude. This creates safe care that supports the transition from the PACU to the ward, as well as the overall recovery process. [ABSTRACT FROM AUTHOR]

Background: Black women and people with uteri have utilized collectivistic and relational practices to improve health outcomes in the face of medical racism and discrimination for decades. However, there remains a need for interventions to improve outcomes of uterine fibroids, a condition that disproportionately impacts Black people with uteri. Leveraging personalized approaches alongside evidence that demonstrates the positive impact of social and peer support on health outcomes, we adapted from CenteringPregnancy, an evidence based group prenatal care intervention, for the education and empowerment of patients with uterine fibroids. Methods: The present report provides an overview of the study design and planned implementation of CPWF in cohorts at Boston Medical Center and Emory University / Grady Memorial Hospital. After receiving training from the Centering Healthcare Institute (CHI), we adapted the 10-session CenteringPregnancy curriculum to an 8-session hybrid group intervention called Centering Patients with Fibroids (CPWF). The study began in 2022 with planned recruitment of six cohorts of 10-12 participants at each institution. We will conduct a mixed methods evaluation of the program using validated survey tools and qualitative methods, including focus groups and 1:1 interviews. Discussion: To date, we have successfully recruited 4 cohorts at Boston Medical Center and are actively implementing BMC Cohort 5 and the first cohort at Emory University / Grady Memorial Hospital. Evaluation of the program is forthcoming. Plain English Summary: Fibroids are non-cancerous smooth muscle tumors that disproportionate impact black women and gender expansive people. Our team adapted CenteringPregnancy, a group based model of prenatal care, to an education and empowerment program for peple with fibroids called Centering Patients with Fibroids (CPWF). This paper describes the development and implemation of the program at two academic hospitals serving diverse patients in Boston, Massachusetts and Atlanta, Georgia. To evaluate the successes and challenges of the program, we ask participants to complete surveys to learn more about their experience with having fibroids and also invite them to group feedback sessions or focus groups. We also interview other healthcare providers, team members, and hospital leadership on their knowledge and thoughts about the program. We hope to use the feedback to improve the program and make it available to more people across the country. [ABSTRACT FROM AUTHOR]

In the area of dental healthcare services, where patients and professionals deal with multiple auditory stimuli, this cross-sectional study reports on the various dynamics of sound preferences, noise obstacles, and the profound impact of music on anxiety reduction within dental office settings. The sample comprises 134 dental patients, primarily females (56.7%), with varying age groups, education levels, and therapy durations in the university clinics of the Department of Dentistry, National and Kapodistrian University of Athens, and four private dental offices at the metropolitan area of Athens, Greece. Notably, 92.5% of the participants reported no hearing loss, and 56.7% exhibited some level of noise sensitivity. This study reveals a moderate to good perceived health status (M = 3.84, SD = 0.95) among participants, with low perceived noise disturbance in university dental clinics. Preferences for instrumental music, foreign pop, and classical music are prominent during waiting times. Potential irritations include impersonal treatment (44%) and staff behavior (41.8%). Correlations and predictors indicate associations between age, gender, educational status, music preferences, and noise disturbances. Findings aim to optimize eco-soundscapes in dental offices, contributing to enhanced patient well-being. The research underscores the potential of music interventions to alleviate dental anxiety and improve the overall dental experience and quality care. [ABSTRACT FROM AUTHOR]

A diagnosis of medically unexplained symptoms (MUS) is made when a person reports a complaint for which no organic disease can be detected. People with MUS commonly present to primary care services in the UK; however, there is no consensus regarding the evidence base for care. This literature review explores the experiences of these patients when they interact with health services. The following themes emerged: experience of diagnosis; expectations; communication; and healthful relationships. People with MUS report negative experiences of health care. Nurses in primary care have an opportunity to provide person-centred care to support these patients, and research could explore the potential contribution of nurses working in primary care in the UK to support them and enhance the evidence base for practice. [ABSTRACT FROM AUTHOR]

Background Organ transplantation from donors with hepatitis C viremia (HCV) to recipients without HCV (HCV D+/R−) has excellent medical outcomes. Less is known about the psychosocial impact and experiences of HCV D+/R− recipients, particularly outside of clinical trials. Methods We conducted in-depth, semistructured interviews with 24 HCV D+/R− recipients (kidney, n = 8; lung, n = 7; liver, n = 5; heart, n = 3; simultaneous heart and kidney, n = 1) who received transplants outside of clinical trials and were treated for HCV after transplant to assess their experiences and perspectives. We used thematic analysis to analyze the interviews. Results Interviewees' reasons for accepting an HCV D + organ were based on perceived benefits and confidence in the effectiveness of HCV treatment. The majority (62%) received HCV treatment within 1 month after transplant (range, 1 day–2 months). Most interviewees reported positive transplant outcomes, including reduced wait times and improved survival, health, physical activity, and quality of life. Overall, themes and experiences did not differ significantly between different organ transplant types. Generally, interviewees did not perceive stigma from those aware of the HCV D+ transplant; yet, disclosure was selective and a few recipients reported concerns from family members about posttransplant HCV transmission risk. Other common concerns included treatment costs and delays, which were not always anticipated by recipients. Conclusions Our findings suggest that HCV D+/R− kidney, liver, and heart and lung transplant recipients outside of clinical trials had overall positive experiences. However, HCV transmission risk, treatments costs, and treatment delays were a source of concern that might be mitigated with targeted pretransplant education. [ABSTRACT FROM AUTHOR]

Background: Admission to an intensive care unit has physiological and psychological consequences for patients and families, including the family's fear that the patient might die. The COVID‐19 pandemic underlined this and furthermore involved visiting restrictions separating patients and families. Aim: To explore how patients with confirmed COVID‐19 and their relatives experienced an intensive care unit stay and its significance for family dynamics. Study Design: A qualitative study was performed during the spring of 2020. Five dyadic interviews were conducted with COVID‐19 patients admitted to an intensive care unit and their relatives. The analysis was inspired by Hochman's dyadic analysis. Findings: The analysis revealed three themes: (1) From ill to critically ill: The trauma of separation and fear of losing loved ones; (2) The relatives' significant role in creating a shared coherent understanding of the admission in ICU due to COVID‐19; (3) The nurses' roles as a go‐between in maintenance of the family dynamic. Conclusion: Separation challenged family function and destabilized family dynamics. Nurses provided emotional support, information about and contact with the patient and relatives. The patients' distorted perception of reality and lack of memory were reconstructed in new family narratives, which offered relief and stabilization of family dynamics. The nurses entered into a triad with the patient and relatives, which also contributed to maintaining a relational dynamic in the family. Relevance to Clinical Practice: Maintaining communication between health professionals, relatives and patients, and usage of virtual visits during intensive care unit stay can support the family relationship. Nurse therapeutic conversations might help families' in redefining their family dynamics after ICU admission. [ABSTRACT FROM AUTHOR]

This study searches into the critical aspect of branding and reputation management within the dynamic view of the healthcare industry. This research aims to provide actionable insights for healthcare organizations to navigate the complexities of building and maintaining a strong brand identity by comprehensively analyzing the multifaceted aspects of healthcare branding, including its foundational principles, strategies, challenges, and opportunities. The research problem centers on identifying gaps and challenges in current healthcare branding and reputation management practices, recognizing the pressing need for systematic examination within evolving patient expectations, competitive pressures, and regulatory environments. This study offers a nuanced understanding of these critical areas through a structured exploration of healthcare branding's fundamental significance, strategies employed for reputation management, and identifying existing challenges and opportunities. Drawing upon Brand Equity Theory, which underscores the value of a brand beyond solid assets, the study explains the role of brand equity in shaping patient perceptions, organizational success, and overall health outcomes within the healthcare context. Furthermore, the research outlines future avenues for investigation, including the impact of emerging technologies, longitudinal assessments of branding initiatives, data-driven insights, ethical considerations, and collaborative co-creation strategies. This study aims to advance knowledge and practice in healthcare branding and reputation management by addressing these areas and empowering healthcare organizations to enhance patient experiences, organizational performance, and public health outcomes in an ever-evolving healthcare view. [ABSTRACT FROM AUTHOR]