Objectives Liver 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. Methods Using 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. Results Twenty-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. Discussion The 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.
Objectives We 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. Methods Semi-structured interviews exploring barriers to optimal rare disease care, the impacts of these barriers, empowerment strategies used, and recommendations. The Ten New Rules to Redesign and Improve Care Framework proposed by the Committee on Quality of Health Care in America of the US Institute of Medicine (2001) guided content analysis. Results Twelve 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. Discussion There is a clear and pressing need to improve the quality of care for people living with rare diseases, in alignment with major clinical recommendations.
Objectives This 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. Methods Utilizing 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. Results The 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. Discussion The 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.
ObjectiveTo assess the psychometric properties of the Tigrigna version Medical Outcomes Study Short Form-36 (MOS SF-36) tool for pulmonary tuberculosis(TB) patients.MethodsThe study was conducted among pulmonary TB patients in the Tigray region of northern Ethiopia, using a cross-sectional study design. We evaluated the ceiling and floor effects, along with various types of reliability and validity for the questionnaire. Additionally, model fit for the item structure was assessed through confirmatory factor analysis (CFA).ResultsThe internal consistency reliability (Cronbach's α) of the MOS SF-36 Tigrigna version tool was 0.86. The Intra-class Correlation Coefficient(ICC) varied from 0.62 to 0.89, while test-retest reliability was 0.725. The Item-Content Validity Index(I-CVI) varied between 0.86 and 1, with an average Scale-Content Validity Index(S-CVI/Ave) of 0.93. No ceiling or floor effects were observed. CFA demonstrated a well-fitting model with the following results: Chi-square/df = 2.1(p < 0.001), Comparative Fit Index (CFI) = 0.98, Goodness of Fit Index(GFI) = 0.96, Root Mean Square Error of Approximation (RMSEA) = 0.04, and Standardized Root Mean Square Residuals (SRMR) = 0.06.ConclusionThis study indicated that the Tigrigna form of the MOS SF-36 QOL tool exhibited good reliability and validity properties among patients with pulmonary tuberculosis. The instrument can be utilized in research and medical practices in Ethiopia's TB population.
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.
