Chronic IllnessPub Date : 2026-10-13DOI: 10.1177/17423953261491391
Cathy Beresford, Sue Baron, Jackie Dominey, Leslie Gelling, Yvonne Gray, Clement O'Donovan, Mahabuba Rahman, Sandra Ramshaw, William R Williams
{"title":"Empowerment in advanced liver disease: UK experiences of care from the perspectives of people with lived experience, carers and healthcare professionals.","authors":"Cathy Beresford, Sue Baron, Jackie Dominey, Leslie Gelling, Yvonne Gray, Clement O'Donovan, Mahabuba Rahman, Sandra Ramshaw, William R Williams","doi":"10.1177/17423953261491391","DOIUrl":"https://doi.org/10.1177/17423953261491391","url":null,"abstract":"<p><p>ObjectivesLiver disease is a leading cause of morbidity and mortality, with alcohol-related liver disease, metabolic-associated steatotic liver disease, and viral hepatitis comprising most cases in the UK. Advanced liver disease presents challenges due to unpredictable disease trajectories, high symptom burden, psychosocial impacts, and stigma. This study aimed to develop an explanatory theory of care experiences in decompensated advanced liver disease from the perspectives of individuals living with the condition, carers, and healthcare professionals, with public involvement embedded throughout.MethodsUsing Charmaz's Constructivist Grounded Theory methodology, semi-structured interviews were conducted across the UK with individuals with advanced liver disease, carers, and healthcare professionals. Data collection and analysis occurred concurrently using constant comparison, focused coding, memoing, and theoretical sampling.ResultsTwenty-four people participated in interviews. Analysis generated the Empowerment Continuum, an explanatory theory conceptualising empowerment as a dynamic, relational process shaped by personal, relational, and systemic factors. Five conceptual categories informed the theory: self-care, navigating healthcare services, healthcare professionals' contributions, carers' involvement and support, and information and communication.DiscussionThe Empowerment Continuum provides a framework for understanding care experiences in advanced liver disease. Supporting empowerment requires collaborative, accessible, and person-centred approaches involving people with liver disease, carers, and healthcare professionals.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"17423953261491391"},"PeriodicalIF":1.4,"publicationDate":"2026-10-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149185407","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Understanding barriers to quality healthcare in rare diseases.","authors":"Ariane Quintal, Élissa Hotte, Annie-Danielle Grenier, Caroline Hébert, Isabelle Carreau, Yves Berthiaume, Eric Racine","doi":"10.1177/17423953261491392","DOIUrl":"https://doi.org/10.1177/17423953261491392","url":null,"abstract":"<p><p>ObjectivesWe aimed to (1) understand barriers to quality healthcare and services in the context of rare diseases and (2) identify the multifaceted impacts of these barriers on rare disease patients.MethodsSemi-structured interviews exploring barriers to optimal rare disease care, the impacts of these barriers, empowerment strategies used, and recommendations. The <i>Ten New Rules to Redesign and Improve Care Framework</i> proposed by the Committee on Quality of Health Care in America of the US Institute of Medicine (2001) guided content analysis.ResultsTwelve individuals living with different rare diseases were interviewed. Numerous pertinent barriers were reported. For example, 'care based on continuous healing relationships' (rule 1) is impacted by very long delays in obtaining diagnoses. Patient abandonment and lack of follow-up are also experienced because of the perplexing nature of rare diseases. Regarding 'the patient as the source of control' (rule 3), the rationality of patients is questioned, including claims of malingering and misunderstandings about their unusual experiences. These barriers have multifaceted impacts such as strong negative affect and estrangement from mainstream healthcare.DiscussionThere is a clear and pressing need to improve the quality of care for people living with rare diseases, in alignment with major clinical recommendations.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"17423953261491392"},"PeriodicalIF":1.4,"publicationDate":"2026-10-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149138828","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Chronic IllnessPub Date : 2026-09-28DOI: 10.1177/17423953261491393
Michael Stellefson, Min Qi Wang, Olivia Campbell, Sabrina Mousum
{"title":"Social determinants and health-related social needs associated with physical and mental distress among U.S. adults with COPD.","authors":"Michael Stellefson, Min Qi Wang, Olivia Campbell, Sabrina Mousum","doi":"10.1177/17423953261491393","DOIUrl":"https://doi.org/10.1177/17423953261491393","url":null,"abstract":"<p><p>ObjectivesThis study investigated the prevalence of adverse social determinants of health (SDOH) and health-related social needs (HRSN) and their associations with physical and mental distress among U.S. adults with Chronic Obstructive Pulmonary disease (COPD).MethodsData from the 2022 Behavioral Risk Factor Surveillance System (BRFSS) was analyzed for respondents across 37 U.S. states who self-reported COPD and completed the Social Determinants and Health Equity module. Weighted prevalence estimates and logistic regression models evaluated associations between SDOH, HRSN, and self-reported physical/mental health, controlling for demographics.ResultsAmong 32,962 respondents with COPD, social isolation (23.08%) and mental stress (24.80%) were common. Females experienced high rates of food insecurity (65.59%) and housing insecurity (65.90%). Social isolation (OR = 1.84, 95% CI: 1.83-1.85) and life dissatisfaction (OR = 2.10, 95% CI: 2.09-2.11) were associated with increased odds of frequent physical distress. For mental distress, life dissatisfaction (OR = 5.07, 95% CI: 5.04-5.10), stress (OR = 7.11, 95% CI: 7.07-7.14), and transportation barriers (OR = 2.15, 95% CI: 2.14-2.16) were associated with increased odds.DiscussionSocial isolation, life dissatisfaction, stress, and transportation barriers were associated with increased physical and mental distress in COPD.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"17423953261491393"},"PeriodicalIF":1.4,"publicationDate":"2026-09-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149076236","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Chronic IllnessPub Date : 2026-09-23DOI: 10.1177/17423953261491389
Zahide Akeren, Servet Kalyoncuo
{"title":"Social support mediates relationship between death anxiety and stress in chronic illness.","authors":"Zahide Akeren, Servet Kalyoncuo","doi":"10.1177/17423953261491389","DOIUrl":"https://doi.org/10.1177/17423953261491389","url":null,"abstract":"<p><p>BackgroundFear of death may become salient among individuals with chronic illness. This study examined the mediating role of perceived social support in the relationship between death anxiety and perceived stress in individuals with chronic illness.MethodsThe study was conducted with 265 individuals diagnosed with chronic illness. The sample included participants with hypertension (20.7%), diabetes (19.6%), and cardiovascular diseases (16.2%), among conditions. Data were collected using the Templer Death Anxiety Scale, the Perceived Stress Scale, and the Multidimensional Scale of Perceived Social Support.ResultsA weak negative correlation was found between death anxiety and perceived social support (r = -0.156, p = 0.011), while a positive correlation was observed between death anxiety and perceived stress (r = 0.362, p < 0.001). The proportion of the total effect mediated by perceived social support was 32.7%. Death anxiety was associated with perceived stress (β = 0.347, p < 0.001). The of perceived social support as a mediator, the coefficient decreased (β = 0.234, p < 0.001), indicating partial mediation.ConclusionPerceived social support partially mediated the relationship between death anxiety and perceived stress. Higher levels of death anxiety were associated with higher perceived stress, and this association was attenuated in the presence of perceived social support.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"17423953261491389"},"PeriodicalIF":1.4,"publicationDate":"2026-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149026299","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Chronic IllnessPub Date : 2026-09-02DOI: 10.1177/17423953261476052
Sanne Lykke Lundstrøm, Karin Burns, Nana Folmann Hempler, Nina Ingemann Christensen, Ulla Toft, Ole Snorgaard, Louise Meinertz Jakobsen
{"title":"How organizational conditions shape development and assessment of patient-Centered lifestyle interventions targeting hard-to-reach patients with cardiac disease or type 2 diabetes.","authors":"Sanne Lykke Lundstrøm, Karin Burns, Nana Folmann Hempler, Nina Ingemann Christensen, Ulla Toft, Ole Snorgaard, Louise Meinertz Jakobsen","doi":"10.1177/17423953261476052","DOIUrl":"https://doi.org/10.1177/17423953261476052","url":null,"abstract":"<p><p>ObjectivesThis study explores how organizational conditions affect the development and implementation of dialogue-based methods for patients with cardiac disease or type 2 diabetes, focusing on hard-to-reach groups.MethodsUtilizing audio recordings, transcripts, and field notes from 2018-2019, we applied the Theoretical Domains Framework to analyze how individual and group processes influenced the development and implementation of initiatives.ResultsThe study identified five key themes: environmental context and resources, social influences, skills, professional roles and identity, and optimism. A significant variation in resources and attitudes between cardiac and diabetes outpatient clinics was observed, affecting the success of dialogue-based rehabilitation strategies Cardiac nurses were more optimistic and proactive, unlike their counterparts in diabetes clinics who faced challenges related to longer disease duration and less obvious complications. Specifically, cardiac clinics had structured programs and consistent resources, while diabetes clinics faced sporadic patient engagement and limited support.DiscussionThe study advocates for a shift toward organizationally supported, comprehensive programs, emphasizing the need for a holistic approach in the healthcare sector to enhance the effectiveness of lifestyle interventions for chronic diseases. It further stresses the value of addressing the psychosocial factors within healthcare settings to improve patient care quality and employee well-being.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"17423953261476052"},"PeriodicalIF":1.4,"publicationDate":"2026-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148882337","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Chronic IllnessPub Date : 2026-09-01Epub Date: 2026-05-30DOI: 10.1177/17423953261452631
Havva İpek Demir, Ebru Yalçın, Halime Nayır Büyükşahin, Suat Savaş, Velat Şen, Hadice Selimoğlu Şen, Azer Kılıç Başkan, Ayşe Ayzıt Kılınç, Hakan Yazan, Abdülhamit Çollak, Erkan Çakır, Hanife Tuğçe Çağlar, Fatih Ercan, Sevgi Pekcan, Merve Korkmaz, Yakup Canıtez, Bahar Girgin Dindar, Figen Gülen Seyhan, Elif Arık, Özlem Keskin, Ali Ersoy, Mehmet Köse, Mahir Serbes, Derya Ufuk Altıntaş, Ebru Çelebioğlu, Oğuz Karcıoğlu, Abdurrahman Erdem Başaran, Ayşen Bingöl, Zeynep İlkşen Hocoğlu, Ayşe Tana Aslan, Demet Polat Yuluğ, Ali Özdemir, Işıl Bilgiç, Gökçen Dilşa Tuğcu, Koray Harmancı, Beste Özsezen, Pervin Korkmaz, Nazan Çobanoğlu, Hasan Yüksel, Sibel Doğru, Gönül Çaltepe, Melih Hangül, Zeynep Gökçe Gayretli Aydın, Mehmet Kılıç, Hamza Ogun, Mina Hızal, Ayşe Süleyman, Gizem Özcan, Aslı Görek Dilektaşlı, Tuğba Şişmanlar Eyüboğlu, Nagehan Emiralioğlu Ordukaya, Güzin Cinel, Uğur Özçelik, Deniz Doğru Ersöz
{"title":"Determination of the yearly distribution of the incidence of Allergic Bronchopulmonary Aspergillosis (ABPA) in patients registered in the cystic fibrosis patient registry system of Turkey and identification of risk factors for its development.","authors":"Havva İpek Demir, Ebru Yalçın, Halime Nayır Büyükşahin, Suat Savaş, Velat Şen, Hadice Selimoğlu Şen, Azer Kılıç Başkan, Ayşe Ayzıt Kılınç, Hakan Yazan, Abdülhamit Çollak, Erkan Çakır, Hanife Tuğçe Çağlar, Fatih Ercan, Sevgi Pekcan, Merve Korkmaz, Yakup Canıtez, Bahar Girgin Dindar, Figen Gülen Seyhan, Elif Arık, Özlem Keskin, Ali Ersoy, Mehmet Köse, Mahir Serbes, Derya Ufuk Altıntaş, Ebru Çelebioğlu, Oğuz Karcıoğlu, Abdurrahman Erdem Başaran, Ayşen Bingöl, Zeynep İlkşen Hocoğlu, Ayşe Tana Aslan, Demet Polat Yuluğ, Ali Özdemir, Işıl Bilgiç, Gökçen Dilşa Tuğcu, Koray Harmancı, Beste Özsezen, Pervin Korkmaz, Nazan Çobanoğlu, Hasan Yüksel, Sibel Doğru, Gönül Çaltepe, Melih Hangül, Zeynep Gökçe Gayretli Aydın, Mehmet Kılıç, Hamza Ogun, Mina Hızal, Ayşe Süleyman, Gizem Özcan, Aslı Görek Dilektaşlı, Tuğba Şişmanlar Eyüboğlu, Nagehan Emiralioğlu Ordukaya, Güzin Cinel, Uğur Özçelik, Deniz Doğru Ersöz","doi":"10.1177/17423953261452631","DOIUrl":"10.1177/17423953261452631","url":null,"abstract":"<p><p>BackgroundAllergic bronchopulmonary aspergillosis (ABPA), is a hypersensitivity reaction in the lung against the antigens of Aspergillus fumigatus. The aim of this study is to determine the incidence of ABPA, and to determine the risk factors leading to the development of ABPA.MethodsThe study was designed as a retrospective cohort study. Using the CF Registry System of Turkey data, the incidence of ABPA was determined and the clinical and demographic characteristics of 44 patients newly diagnosed with ABPA in 2022 and 132 patients with similar mutation weight and age range without ABPA diagnosis in that year were examined and compared. Also risk factors affecting the development of ABPA were determined.ResultsLow pulmonary function test values, having had at least one pulmonary exacerbation in that year, receiving intravenous antibiotic treatment, using inhaled antibiotics, having high number of pulmonary exacerbations, having <i>Pseudomonas aeruginosa</i> colonization, having low body mass index (BMI), having cystic fibrosis related diabetes mellitus were found to be among the risk factors for the development of ABPA.ConclusionsEarly recognition and treatment of ABPA is essential to prevent further damage to the lungs. Patients with frequent pulmonary exacerbations, low BMI and low pulmonary function test values, chronic colonization should definitely be considered for ABPA.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"229-239"},"PeriodicalIF":1.4,"publicationDate":"2026-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148057688","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Chronic IllnessPub Date : 2026-09-01Epub Date: 2026-08-12DOI: 10.1177/17423953261470328
Mei-Yu Lin, Pao-Chin Lai
{"title":"The association of chronotype with sleep quality and mental health in dialysis patients: A cross-sectional study.","authors":"Mei-Yu Lin, Pao-Chin Lai","doi":"10.1177/17423953261470328","DOIUrl":"10.1177/17423953261470328","url":null,"abstract":"<p><p>BackgroundPatients on hemodialysis commonly experience poor sleep quality, fatigue, and depression. Chronotype may influence these outcomes, but its role in this population remains unclear.ObjectivesThis study examined associations among chronotype, sleep quality, fatigue, and depression, and tested the mediating role of sleep quality.MethodsIn this cross-sectional study of 157 patients on hemodialysis (mean age, 63.99 years; 58.6% male), chronotype (Morningness-Eveningness Questionnaire), sleep quality (Pittsburgh Sleep Quality Index [PSQI]), fatigue (Fatigue Severity Scale [FSS]), and depression (Beck Depression Inventory [BDI]-II) were assessed. Correlation and mediation analyses were used to examine these relationships.ResultsEvening types (38.2%) had significantly poorer mean ± standard deviation PSQI scores (12.57 ± 3.37) than neither types (53.5%; 9.73 ± 4.23, p < 0.001) and morning types (8.3%; 8.23 ± 4.36, p = 0.001), particularly in terms of sleep duration, efficiency, and medication use. Fatigue (FSS score=4.63 ± 1.17) and depression (BDI-II score=9.07 ± 7.81) did not differ according to chronotype.DiscussionEvening chronotype was associated with poorer sleep quality, which in turn was linked to increased fatigue and depression. Targeted sleep interventions for evening types may improve outcomes by correcting circadian misalignment and enhancing sleep efficiency. Sleep hygiene education and timed light exposure may offer clinically meaningful benefits in terms of sleep and psychological well-being.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"205-214"},"PeriodicalIF":1.4,"publicationDate":"2026-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148727085","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Chronic IllnessPub Date : 2026-09-01Epub Date: 2026-06-16DOI: 10.1177/17423953261457951
Lourdes Cantarero-Arevalo, Caroline Buhl, Anders Skov Nielsen, Lysander Slyngborg, Nanna Smistrup, Liv M Kastrup, Lotte Stig Nørgaard
{"title":"Exploring the boundaries: Selective disclosure, intimacy and belongingness among young adults with chronic conditions.","authors":"Lourdes Cantarero-Arevalo, Caroline Buhl, Anders Skov Nielsen, Lysander Slyngborg, Nanna Smistrup, Liv M Kastrup, Lotte Stig Nørgaard","doi":"10.1177/17423953261457951","DOIUrl":"10.1177/17423953261457951","url":null,"abstract":"<p><p>ObjectiveThis qualitative exploratory study aimed to deepen the understanding of selective disclosure among adolescents and young adults (AYAs) living with chronic conditions, particularly in the context of intimate relationships. The project created a space for AYAs to reflect on and share their lived experiences of managing chronic illness and disclosing it to potential partners.MethodsThe study used a participatory design that combined elements of Youth Participatory Action Research (YPAR) with citizen science. Four YPAR partners, young people with lived experience of chronic illness, were actively involved in all stages of the research process, including topic selection, recruitment, development of questions, data collection, analysis, and dissemination. Additionally, 44 AYAs participated as respondents to a longitudinal qualitative survey consisting of 35 open-ended questions that focused on intimacy, challenges, coping mechanisms, and support systems. NVivo 14 was used to code and analyze responses thematically.ResultsOf the 44 AYAs contacted, 27 answered all survey questions. The sample had a high representation of young women with diabetes and LGBTQ + individuals with ADHD and other chronic conditions. Levels of self-acceptance, feelings of empowerment, and previous experiences of disclosure shaped participants' willingness to disclose their health conditions in intimate situations. Supportive social and relational environments, including open-minded partners and trusted peer networks, encouraged disclosure. In contrast, experiences of stigma, fear of rejection, and concerns about being misunderstood or reduced to their diagnosis acted as barriers. Additionally, the presence of visible medication use or physical symptoms contributed to a sense of vulnerability, further complicating the decision to disclose.ConclusionThe study sheds light on the nuanced relationship between chronic conditions, self-identity, and intimacy among AYAs. It highlights the importance of creating supportive environments and promoting open communication in both clinical and social settings. By integrating YPAR partners throughout the research process, the study highlights the value of participatory methods in capturing diverse youth perspectives and promoting more empathetic approaches to addressing intimacy related challenges in healthcare contexts.MESH termsChronic Disease / psychology*; Qualitative Research; Truth Disclosure*; Young Adult.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"215-228"},"PeriodicalIF":1.4,"publicationDate":"2026-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148260305","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Psychosocial stressors and SLE flares: A grounded theory based on Iranian women's lived experiences.","authors":"Haniyeh Zeraatkar, Reza Rostami, Keyvan Salehi, Abdolrahman Rostamian","doi":"10.1177/17423953261436470","DOIUrl":"10.1177/17423953261436470","url":null,"abstract":"<p><p>ObjectiveSystemic lupus erythematosus (SLE) flares are psychosocially influenced, but there are few culturally sensitive models. This study aims to explore psychosocial factors contributing to lupus flares in women and co-construct a novel framework, grounded in their lived experiences, to guide clinical practice.MethodsUtilizing Charmaz's constructivist grounded theory, we conducted a comprehensive study that included semi-structured interviews with 20 Iranian women who have SLE. Iterative open, focused, and theoretical coding was used to analyze data, with reflexive practices applied to address researchers' cultural assumptions and maintain rigor. Thematic saturation was achieved, situating the developing model within participants' lived experiences.ResultsA new four-domain model was constructed, representing a cyclical process reflecting lupus flare susceptibility. Predisposing Conditions consisted of marital dissatisfaction (e.g., felt spousal invalidation) and extrinsic stressors, with low socio-cultural status (economic distress, cultural divorce taboos) and stressful life events (infidelity, coerced marriages) shaping heightened distress. Mediating Factors-unresolved grief, sleep disturbance, and alexithymia-were viewed to exacerbate emotional and physiological reactions, with sleep disturbance often described by participants as coinciding with inflammatory markers. Responses included non-adaptive illness perception (e.g., \"it is uncontrollable and there is no cure\"), damaged sense of self, and conflicted parental roles, capturing socio-cultural effects. The Implication was difficulty in psychological adjustment to illness, linked with flare. Participants' accounts highlighted a recurring theme linking relational stressors to illness misperceptions, shaped by marital conflict and perceived lack of support.ConclusionsThis culturally informed model reveals new associations among socio-cultural stressors, such as divorce taboos, and lupus flare vulnerability among Iranian women. While acknowledging limitations (the potential influence of anti-inflammatory medications on participants' lived experiences, and also most participants were from lower socio-economic backgrounds), it suggested interventions (e.g., couple therapy, sleep therapy, grief counseling) and research on inflammatory markers. Reflexive grounding underpins equitable progress in SLE care.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"278-292"},"PeriodicalIF":1.4,"publicationDate":"2026-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147786048","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Chronic IllnessPub Date : 2026-09-01Epub Date: 2026-06-10DOI: 10.1177/17423953261452266
Nese Altınok Ersoy, Imatullah Akyar
{"title":"Restless and endless symptom? Pruritus in patients with liver diseases: A mix method study.","authors":"Nese Altınok Ersoy, Imatullah Akyar","doi":"10.1177/17423953261452266","DOIUrl":"10.1177/17423953261452266","url":null,"abstract":"<p><p>ObjectivesThe study aimed to determine the multidimensional impact of pruritus, to define the impact on quality of life and to identify the experiences of patients with the symptom.MethodsA mixed-methods study with sequential quantitative and qualitative method with 57 patients experiencing pruritus in the hepatology and internal medicine clinics.ResultsA pruritus prevalence of 37.7% was found, with a mean score of 19.4 ± 3.4 (0-25) and the daily duration was 18-23 h/day (43.9%). The mean total score of the Liver Disease Symptom Index 2.0 was 66.57 ± 9.13 (0-96). A correlation was found between elevated GGT levels and pruritus. The qualitative content analysis consisted of three main themes: the meaning of pruritus and scratching; impact on quality of life; and ways of coping/dealing with pruritus symptom.DiscussionThe study shows that quantitative and qualitative results concurred that pruritus impairs patient's quality of life in regards to sleep, social isolation, daily living activities, and eating habits.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"240-255"},"PeriodicalIF":1.4,"publicationDate":"2026-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148212987","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}