ObjectivesTo understand individuals' experiences of living with, and attempting to manage, trigeminal neuralgia (TN), a rare neurological disorder characterised by sudden episodes of intense, incapacitating unilateral facial pain.MethodsWe undertook in-depth interviews with (n = 25) individuals living with TN in the United Kingdom recruited via online forums. Data were analysed thematically.ResultsParticipants described the far-reaching impact of TN on their everyday lives, with their experiences broadly fitting into three overarching themes: "enduring pain", "avoiding pain" and "treatment burdens". Taken together, these three overlapping experiences comprise what we term the "triple burden" of TN: namely, the burden and assault to self, arising from being in intense and intractable pain; the burden and loss of self-identity resulting from avoiding pain triggers; and the additional burden resulting from having to balance pain relief with severe medication side effects.DiscussionLiving with TN can be a highly disruptive and distressing experience because TN pain and the strategies people employ to try to avoid triggering it can assault and undermine their self-identities and sense of self-worth. We argue that applying sociological concepts, such as Bury's work on biographical disruption, may help to shed light on people's lived experiences of TN and inform the care and support provided to them.

ObjectivesContinuity of care is a critical component of successful hypertension management. With the growing prevalence of people living with both hypertension and disabilities, it is essential to explore how disability impacts continuity of care. This study aimed to investigate whether disability is associated with continuity of care among people with hypertension.MethodsThis study was a retrospective observational cross-sectional analysis using the 2019 Korea National Health Insurance Service-National Sample Cohort database. A total of 104,280 individuals diagnosed with hypertension aged 30 years and older were included. Multivariate logistic regression was used to examine the impact of disability on the odds of having higher continuity of care, measured using the Bice-Boxerman index, adjusting for sociodemographic factors.ResultsPeople with hypertension who also have physical disabilities were 6.6% less likely to achieve optimal COC compared to those without disabilities (Odds ratio = 0.934; 95% confidence interval = 0.875, 0.998).ConclusionPhysical disability significantly reduces the likelihood of achieving optimal COC in hypertension management. Targeted interventions addressing barriers faced by people with disabilities and hypertension are critical for improving care coordination and health outcomes.DiscussionThis study highlights the need for disability-inclusive healthcare policies and practices to reduce disparities in hypertension care.

ObjectivesQuality of life (QoL) is a significant health outcome for the older adults, especially during the COVID-19 pandemic. The demand for health care from older adults who use home care services often increases sharply due to a lack of healthy behaviors, which harms their QoL to various degrees. Thus, this study aimed to examine the predictors of the QoL of disabled older adults using home care services during the COVID-19 pandemic.MethodsA cross-sectional survey study was conducted. A total of 214 older adults were collected from five home care support centers in the central region of Taiwan from October 1, 2021, to July 8, 2022.ResultsStepwise multiple regression analysis showed that the health promotion of healthy behavior (11.9%), financial status (8.6%), activities of daily living (4.5%), community care services (3.5%), and could explain 28.5% of the variance in predicting the overall QoL.DiscussionMaintaining health-promoting behaviors, having a better financial status, engaging in suitable activities of daily life level, and receiving daycare services could effectively improve the QoL.

AimsIn this study, the aim is to explore how adolescents with inflammatory bowel disease cope with the challenges posed by the illness through psychological adjustment, with the goal of providing insights for the implementation of targeted interventions.MethodsFrom June to August 2023, semi-structured interviews were conducted with patients. Data were analyzed using the Colaizzi seven-step method.ResultsThe psychological adaptation process for adolescents with IBD can be categorized into five main themes: 1) Denial phase: Disbelief in the reality of the disease; 2) Despair Phase：Struggling with the negative emotions brought about by the disease; 3) Rebuilding Phase: Reshaping of cognitive perspective; 4) Adaptation phase: Proactive behavioral response; and 5) Growth phase: Strengthening of psychological resilience.ConclusionHealthcare staff should place emphasis on the patients' positive experiences, foster connections between patients and their individual selves, families, and society, thereby strengthening their psychological adaptability.

ObjectivesLong-term health effects of Omicron infection, particularly persistent Long COVID in hospitalized patients, require further investigation.MethodsPatients hospitalized for Omicron infection (Dec 2022-Mar 2023) underwent follow-ups at 6 months and 1 year post-discharge. Univariate/multivariate analyses identified mortality predictors, symptom trends, and optimal CRP levels (mg/L) thresholds.ResultsAmong 410 patients, 59 died; mortality predictors included age (OR = 1.070), ICU admission (OR = 15.748), diabetes (OR = 3.363), antibacterial use (OR = 0.283), and lymphocyte count (OR = 0.099). At 6 months, 86.0% reported ≥1 symptom (83.5% at 1 year). Fatigue, cough, and snoring were most common, with symptom counts decreasing significantly over time. Symptomatic patients had longer hospital stays (P = 0.022), lymphopenia (P = 0.036), and elevated CRP levels (P = 0.010). A CRP level ≥15.38 mg/L was associated with a greater risk of symptom persistence and may serve as a potential predictive marker.ConclusionHospitalized Omicron survivors experience prolonged symptoms, with ICU admission, age, and diabetes as key mortality risks. Fatigue and snoring may persist despite overall improvement. Elevated CRP and prolonged hospitalization in symptomatic patients underscore the need for long-term monitoring and interventions targeting high-risk groups.

ObjectivesThis review aims to identify the content of family-based interventions that are commonly used for primary caregivers of people diagnosed with chronic illness. In addition, the psychological-related outcome measures of the FAMIs will be examined.MethodsPRISMA was adopted for the review process. We searched CINAHL, Scopus, and Web of Science databases for studies that implemented a family-based intervention for family caregivers of patients with chronic illness. We reviewed articles published between January 2000 and January 2021. Two independent reviewers, multiple researcher triangulation, and peer review were employed to ensure the validity and reliability of the data.ResultsWe included 11 studies in this systematic literature review. In total, seven themes emerged under the content of family-based intervention consisting of family elements, skills, information, activities, positive psychology, recovery, and roles and responsibility. The psychological related outcome measures of the intervention include recovery, patient care management, skills improvement, emotional management, family relationships, and self-functioning.DiscussionThe aspect of family functioning may help the family caregivers to empower themselves and build up their inner strength to face unexpected situations. The results highlighted the importance of the involvement of the experts in family therapy in helping family caregivers. Cultural implications were also highlighted.

ObjectivesTo evaluate religion and spirituality (R/S) and spiritual/religious coping (SRC) in patients with type 2 diabetes mellitus (T2DM).MethodsThis is a study of 124 patients with T2DM, performed in a diabetes outpatient clinic of a teaching hospital in a medium-sized city in Minas Gerais, Brazil. Patients answered a socioeconomic classification questionnaire, the Duke University Religion Index (DUREL), and a validated Portuguese version of the Brief Spiritual/Religious Coping (Brief-SRCOPE) Scale.ResultsThe DUREL scores showed that the studied patients presented mean high levels of organizational religious activity (4.31, SD = 1.43), non-organizational activity (4.68, SD = 1.22), as well as intrinsic religiosity (13.90, SD = 1.94). The SRC total score was 3.67 (SD = 0.36) and the positive coping scale score 3.54 (SD = 0.55); both values were considered elevated. R/S played an important role in the lives of the T2DM patients.ConclusionThe SRC scores showed that R/S were being used in a positive way in addressing the challenges posed by this chronic disease.

ObjectiveTo document the occurrence of post-intensive care syndrome (PICS) in intensive care unit (ICU) survivors with coronavirus disease-2019 (COVID-19) up to one year.MethodsRetrospective observational study at a university hospital post-ICU outpatient clinic. Patients were followed up in-person at 1 month, 3 months, 6 months and one-year after hospital discharge. Cognitive, physical and psychological domains of PICS were evaluated. PICS was defined as at least one dysfunction in the assessment tools in each domain.ResultsSixty-four patients were evaluated during the study period. Median age was 62.5 (55.0-71.0). Fifty-eight percent of them were male. Median APACHE II and admission SOFA scores were 13 (10-16) and 3 (3-4), respectively. Sixty-four, 54, 44, 20 patients were evaluated during the 1 -month, 3-month, 6-month and one-year visits. 94% of patients had PICS at the 1st visit and this declined to 75% in one-year. The ratio of patients who fulfilled all PICS domains were 15%, 10%, 13% and 13%, respectively at 4 follow-up visits. Physical impairment was the most commonly observed dysfunction during all visits.DiscussionThis study showed that at least one domain of PICS persisted in 75% of patients at one-year in COVID-19 ICU survivors.

ObjectivesThe purpose of this study was to assess the extent of diuretic nonadherence and to understand the reasons for diuretic nonadherence among patients with a 90-day heart failure hospital readmission.MethodsThis study utilized a convergent parallel mixed-method design. The extent and reasons for medication nonadherence were measured using the Domains of Subjective Extent of Nonadherence scale. Semi-structured interviews were used to understand patients' reasons for nonadherence. Descriptive and regression tests were used to analyze quantitative data. Thematic analysis was used for qualitative data analysis. Meta-inferences were developed from merged data.ResultsEighty-two adults participated in the study. The merged data indicated that 61% of participants were diuretic nonadherent. The analysis of merged data revealed 3 meta-inferences: (1) Diuretic nonadherence may not be entirely unintentional or intentional; (2) Fearing a loss of dignity contributes to diuretic nonadherence; and (3) Diuretic nonadherence is an act of self-determination.DiscussionIn this study, diuretic nonadherence was a complex mix of unintentional and intentional reasons, a strategy to protect against dignity loss, and an effort to gain control over diuretic effects. A need for dignity and self-determination may be important drivers of nonadherence and should be considered by clinicians and researchers.

ObjectiveThis study aimed to evaluate the psychometric properties of the Persian version of the TSQM-14 in patients with hypertension in IranMethodsThis cross-sectional study was conducted among hypertensive patients referred to primary healthcare centers in Kerman City between January and February 2021. Cronbach's alpha and total-item correlation were used to evaluate internal consistency, while the Intraclass Correlation Coefficient (ICC) was employed to assess test-retest reliability. Construct validity was examined using structural equation modeling (SEM), known-groups validity, and convergent validity.ResultsA total of 319 participants took part in the study, with a mean age of 56.7 years (SD = 13.0), and 57.7% (n = 184) were female. The Cronbach's alpha and ICC values of the TSQM-14 for the composite scales were 0.83 and 0.91, respectively, indicating good reliability. The SEM indices for TSQM-14 demonstrated adequate model fit, with χ² = 118.9 (P ≤ 0.001), CFI = 0.96, RMSEA = 0.07, TLI = 0.95, and NFI = 0.91. The mean (standard deviation (SD)) scores of the composite scale for patients in the uncontrolled group (systolic blood pressure ≥140 mmHg or diastolic blood pressure ≥90 mmHg) and the controlled group were 50.2 (SD = 6.6) and 47.6 (SD = 6.1), respectively (P = 0.021). Additionally, the Spearman correlation coefficient between the TSQM-14 scale and the MMAS-8 was 0.30 (P < 0.001), demonstrating a weak but significant correlation.ConclusionsThis study demonstrated that the Persian version of the TSQM-14 has acceptable reliability, as well as construct and convergent validity, for assessing treatment satisfaction among hypertensive patients.

ObjectivesThis study aimed to develop and validate a generic, non-disease-specific, self-assessment measure that recognizes patients' health capacities and their empowering process of health promotion in chronic illness by using Bodyknowledging as the theoretical frame.MethodsItem generation and expert content validity analysis were the first steps in instrument development. Potential items were then validated in focus group interviews with six patients diagnosed with various chronic diseases. The research team reviewed the resulting items and undertook item reduction. A sample of adults (n = 357) with chronic disease surveyed the instrument items. Exploratory factor analysis with Oblimin rotation was conducted.ResultsA 3-factor solution was identified: nine items on the subscale, seven items on the subscale, and eight items on the subscale. Cronbach alpha for the scale was .92. The final 24-item instrument is non-disease-specific and broadly applicable for use in health promotion within the context of chronic disease. The instrument demonstrates high internal consistency reliability with initial face and construct validity.DiscussionThe new instrument has the potential for measuring patients' empowering process of health promotion in chronic disease and the outcomes of person-centered interventions and may guide clinicians in tailoring individual support.

Background and PurposeThere is inconsistency and lack of conceptual clarity regarding the concept of "recurrence" in diabetes-related foot ulcers. Therefore, the purpose of this concept analysis is to analyze the concept of recurrence-related to diabetes-related foot ulcer after the healing of a previous foot ulcer.MethodThe Rodger's evolutionary concept analysis method was employed to analyze the concept of recurrence in diabetes-related foot ulcers. Eight databases, including PubMed, EMBASE, CINAHL Plus with Full Text, MEDLINE with Full Text (EBSCO), Web of Science, Cochrane Library, PsychoINFO, and Scopus, were searched. Additionally, Google Scholar, bibliographies, and hand searching were conducted. The search spanned from inception through August 13, 2023, yielding 3290 studies. Among these, 3242 did not meet the inclusion criteria, leaving 46 articles that fulfilled the criteria.FindingsIn a majority of the studies (n = 20, 43%), diabetes-related foot ulcer recurrence occurred at the same site after the healing of previous foot ulcers. In contrast, in fourteen (20%) studies, the diabetes-related foot ulcer recurrence was described as not at the same site as the previous foot ulcer. In the other twelve (26%) studies, the attribute of recurrence was not identified.ConclusionsThe concept of recurrence-related to diabetes-related foot ulcer should be reserved for diabetes-related foot ulcers at the same site after the healing of previous foot ulcers.

ObjectiveThis study investigated how patients managed their chronic diseases, focusing on burden of treatment, within the primary care level in Mendoza Province, Argentina.MethodThe study used a mixed-methods approach, including a qualitative component with a purposive sampling of patients with diabetes, hypertension, or depression using primary care services, and a quantitative component with secondary analysis of databases from public and social security. Ten focus group sessions were conducted at primary healthcare centers in urban and rural areas. The Burden of Treatment theory was used to frame the analysis.ResultsThe study found that accessing care was difficult due to appointment difficulties and long waiting times, and obtaining medication and laboratory tests at secondary centers was also problematic. Non-emergency hospital care required primary care referrals, and users in rural areas faced access problems. Financial constraints were significant, with co-payments in social security sector, transportation costs, and lost work revenue. Strategies employed included networking, emergency service use, careful planning, and taking loans.ConclusionThis study underscores the complex implications of chronic disease management in a subnational healthcare system and provides insights for policymakers and healthcare providers.

ObjectivesMany factors affect caregiver burden. Limited studies exist on the effect of social support and fatigue on family caregivers. This study aims to explore the impact of fatigue and social support on the burden experienced by family caregivers of palliative care patients.MethodsThe study was conducted with 80 family caregivers. Data were collected using the Piper Fatigue Scale, the Burden Interview, and the Multidimensional Scale of Perceived Social Support. Regression analysis was used to evaluate the data.ResultsThe regression analysis revealed that higher scores on the MSPSS were significantly associated with lower Burden Interview scores (p < 0.05). Conversely, higher PFS scores were significantly correlated with increased Burden Interview scores (p < 0.05).DiscussionBoth fatigue and social support play a critical role in shaping the caregiving burden experienced by family caregivers. Interventions aimed at reducing caregiver fatigue and enhancing social support may help alleviate this burden.

ObjectivesTo contribute to a better understanding of the complexities of social support exchanged within couples coping with Parkinson's disease (PD), the present study aimed to identify costs and complications of support between persons with PD (PWPs) and their partners, as well as how to effectively manage such challenges.MethodsIn-depth interviews were conducted with 63 participants, including 31 PWPs and 32 partners. Interviews were transcribed and analyzed using constant comparative techniques.ResultsParticipants reported the following complications and costs of social support: and In addition, participants discussed effectively managing challenges of support by and DiscussionIn health care and interventions, it is important for PWPs and partners to be educated about social support so that couples can anticipate these costs and complications of support and consider which management strategies are likely to be effective for them in various circumstances.

ObjectivesThe study delves into the intricacies of cancer-related fatigue (CRF), the quality of life (QoL), and other demographic variables of female adolescent and young adult cancer survivors (AYACS) in the landscape of Kerala, India.MethodsThe cross-sectional study included 288 female AYACS who were selected through purposive sampling and completed self-reported questionnaires on CRF, QoL, and demographic and clinical data. Statistical analyses were applied, including correlation, one-way ANOVA, and regression.Resultsand discussion: The temporal dimension is particularly interesting, as individuals three to five years post-treatment report heightened CRF and QoL scores. Furthermore, the research unveils the pivotal role played by predictors such as marital status, educational attainment, and employment status in shaping QoL. Marital status and education emerge as positive predictors of well-being. The study unveils compelling insights into AYA cancer survivorship, revealing a profound impact of CRF on the quality of life dimensions. The role of spirituality, sometimes affecting social connectedness, adds intrigue.ConclusionThe findings provide insights into the complex world of female AYACS, compelling researchers to ponder the significance of addressing CRF and tailoring rehabilitation systems during the critical post-treatment phase, with recognition of gender-specific challenges.

ObjectivesThis study aimed to identify patients at higher risk for regional disengagement from health services using the Patient-centered Relevance Index (P-RI).MethodsThis nationwide retrospective cohort study analyzed the relationship between the P-RI and individual patient characteristics, including medical conditions and healthcare utilization patterns. The National Health Insurance Service claims database was used to characterize healthcare utilization by 3,046,914 patients with DM from 2017 to 2020.ResultsAs compared to the mild condition group, all other groups had a lower P-RI. Significant differences were observed among the groups with P-RI lower by 16.5%, 14%, 13%, 0.4%, and 0.6% in the repeated inpatient treatment (β = -0.165, P < 0.001), complication (β = -0.141, P < 0.001), extended long-term care stay (β = -0.130, P < 0.001), comorbidity (β = -0.041, P < 0.001), and other (β = -0.058, P < 0.001) groups, respectively. Additionally, the P-RI was high among low-income and older patients with high acuity.DiscussionSouth Korea's healthcare delivery system is not regionally self-sufficient. A relatively low P-RI in the high income and younger groups indicates healthcare access inequity. Therefore, a continuous management system that ensures uniform healthcare access needs to be established.

ObjectiveThe aim of this study was to explore the experiences of university students with a chronic illness in Ireland. The study also aimed to gain insight into students' experiences with Disability Support Services (DSS) and identify gaps where additional supports and resources are needed.DesignCross-sectional qualitative study.MethodsFourteen students from three Irish universities participated in semi-structured interviews. The interviews were audio-recorded, transcribed, and analysed through the six-step process of reflexive thematic analysis.ResultsFour themes were developed: (1) The burden of managing a chronic illness alongside university education; (2) Interruptions, disruptions and alterations to college life; (3) Flexible supports for fluctuating conditions; (4) Achieving in educating while living with a chronic illness.ConclusionsParticipants reported a physical and emotional burden. Despite engaging in rigorous management strategies, many participants missed lectures and socialising with peers. Some found the supports from DSS to be useful, however many were unsure if they qualified for support, or found the supports available to be generic and inadequate for their needs. There is significant scope for the delivery of both teaching and DSS to be improved for this cohort, ensuring that all students, regardless of their health status, have equal opportunities for success.

ObjectiveTo analyze the published randomized controlled trials (RCTs) that investigated the effects of physical rehabilitation interventions provided directly (face to face) and by telerehabilitation on exercise performance, dyspnea, and health-related quality of life (HRQoL) in acute and post-acute COVID-19 patients.MethodsFor this systematic review and meta-analysis, different electronic databases were searched up to January 2023. Mean difference (MD), (standardized mean difference (SMD) were calculated.Results34 studies (2214 patients) met the study criteria. Physical interventions may improve aerobic capacity in acute COVID-19 (SMD 1.7; 95% CI 0.37, 2.8) and in post-acute COVID-19 participants (MD 0.4; 95% CI 0.1, 07) compared to usual care for acute and pos-acute COVID-19 patients, respectively. Physical interventions may also improve dyspnea in acute (SMD -1.4; 95% CI -0.8, -0.01) and in post-acute COVID-19 participants (MD -0.4; 95% CI -0.7, -0.2) compared to usual care. Physical interventions may result in an improvement in HRQoL (physical domain) (SMD 0.6; 95% CI 0.3) in post-acute COVID-19 participants compared to usual care in pos-acute COVID-19 patients.DiscussionThe results support that physical rehabilitation interventions improve aerobic capacity and dyspnea in acute and post-COVID-19 patients. Moreover, physical interventions improve physical domain in HRQoL.

ObjectivesTo review the effect of telemedicine interventions on cardiovascular risk factors control in people with arterial hypertension (AH), type 2 diabetes (T2D), or both in primary care.MethodsWe conducted a systematic review in February 2024 using PubMed/MEDLINE, Cochrane Library, and EMBASE databases. We included randomised controlled trials from 2010 onwards, lasting ≥3 months, comparing telemedicine to standard care for managing cardiovascular risk factors in adults with AH, T2D, or both.ResultsAmong 1803 records, 54 were included. Telemonitoring with teleconsultations showed the best outcomes. For AH, systolic blood pressure decreased by -5.63 mmHg (95% CI -9.13 to -2.13) at 6 months and -5.59 mmHg (95% CI -10.03 to -1.14) at 12 months compared to standard care. For T2D, HbA1c decreased by -0.45% (95% CI -0.90 to 0.00) at 6 months and -0.18% (95% CI -0.41 to 0.05) at 12 months compared to standard care. Blood glucose self-monitoring was as effective as telemonitoring for T2D at 6 months. The effect on diastolic blood pressure, low-density lipoprotein, triglycerides, and body mass index was non-significant.DiscussionTelemedicine offers short-term benefits but lacks long-term effectiveness. Optimal outcomes require a combined telemedicine approach, health education co-intervention, ≥12-month follow-up, and careful patient selection.

To identify perceptions and experiences related to caring science and collaborative care in intervention participants of the Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) study, a randomized, multi-site clinical trial for patients with chronic heart failure and reduced health status.