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 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).Methods Data 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.Results Among 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.Discussion Social isolation, life dissatisfaction, stress, and transportation barriers were associated with increased physical and mental distress in COPD.
Background Fear 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. Methods The 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. Results A 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 (beta = 0.347, p < 0.001). The of perceived social support as a mediator, the coefficient decreased (beta = 0.234, p < 0.001), indicating partial mediation. Conclusion Perceived 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.
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.
