Health Literacy and Self-Care in Patients with Chronic Illness: A Systematic Review and Meta-Analysis Protocol.

Self-care plays a critical role in symptom recognition, management, and risk factor modification for patients with chronic illnesses. Despite its significance, self-care levels in this population are generally poor. Health literacy (HL) is pivotal for promoting effective self-care, yet the association across specific chronic illnesses remains fragmented and conflicting. Therefore, a systematic review and meta-analysis will be conducted. Inclusion criteria encompass quantitative studies involving adult patients with at least one chronic illness reporting on the association between a measure of HL and one or more elements of self-care behaviors as outcomes. Databases to be searched include PubMed, CINAHL, APA PsycINFO, Embase, Web of Science, and Cochrane Central Register of Controlled Trials. The studies will undergo risk of bias and certainty of evidence assessment using ROBINS-E and GRADE. Extracted data will include authors, publication date, aim(s), study location, design, sample characteristics, chronic illness type, study length, HL, and self-care measures. Understanding the link between HL and self-care can aid healthcare providers in implementing strategies to enhance health-promoting behaviors, contributing valuable insights to the scientific community and fostering nuanced discussions. This protocol ensures methodological transparency, stimulates discourse, and paves the way for informed interventions to improve overall health outcomes.

Psychometric testing of the Thai version of Caregiver Contribution to Self-Care of Chronic Illness Inventory version 2.

AIM: To assess the psychometric properties of the Thai version of Caregiver Contribution to Self-Care of Chronic Illness Inventory version 2 (CC-SC-CII-v2) among primary caregivers of individuals with any single or multiple chronic illnesses. BACKGROUND: The instrument encompasses three scales that evaluate Caregiver Contribution to Self-Care (CC-SC) Maintenance, Monitoring and Management. METHODS: The English version CC-SC-CII-v2 was translated and adapted for Thai context, and a cross-sectional multicenter study involved 430 caregivers from 16 primary care centres in Thailand. Structural validity, internal consistency reliability and test-retest reliability were examined. RESULTS: The original two-factor CC-SC Maintenance scale required a re-specified model for good fit, while the CC-SC Monitoring and CC-SC Management scales fit well. The simultaneous model of three scales demonstrated satisfactory fit. The CC-SC Maintenance and CC-SC Management scales both had a composite reliability index of 0.85, with omega coefficients of 0.86 and 0.83, respectively. CC-SC Monitoring had an alpha coefficient of 0.89. The intraclass correlation coefficients ranging from 0.84 to 0.91, indicating good test-retest reliability. CONCLUSION: The Thai CC-SC-CII-v2 is a valid and reliable instrument that can provide clinicians and investigators with an evaluation of the contributions of caregivers to the self-care of patients with chronic illnesses.

Using the common-sense model of illness representations to explore individuals' experiences and perceptions of migraine and its management in the United Kingdom.

OBJECTIVES: Migraine is considered a chronic health condition that impacts both quality of life and psychological wellbeing. People with migraines use a range of management strategies, which include pharmacological and non-pharmacological treatments. The aim of this study was to explore individuals' experiences and perceptions of migraines and its treatment using the Common-Sense Model (CSM) of Illness Representations. METHODS: Semi-structured, one-to-one interviews were conducted with eleven individuals with a history of migraine to explore their experiences and perceptions of migraine and its treatment. Participants were recruited from across the United Kingdom via convenience sampling using social media advertisement. Interviews were recorded, transcribed verbatim, and qualitative data were analysed using theoretical framework analysis using the CSM. RESULTS: The three dimensions of the CSM were mapped on to the qualitative data. These were: (i) Cognitive representations of migraine, within five domains: (a) identity of migraine, (b) perceived causes, (c) perceived timeline, (d) perceived control/cure, and (e) perceived consequences; (ii) Emotional representations of migraine relating to (a) migraine specific emotions and (b) emotional representation of the impact of migraine; and (iii) Coping/self-management behaviours, namely (a) self-medicating behaviours and (b) care-seeking behaviours. No incongruous data were found; therefore, no further thematic analysis was required. CONCLUSION: This is the first study to apply the CSM to migraine for framework analysis of qualitative data in this way. The findings illustrate the emotional impact of migraine and the range of illness perceptions associated with appropriate self-management. The data will be used to design a questionnaire for quantitative studies to investigate the extent to which these perceptions are generalizable to the wider population of people who experience migraines.

"They seemed to be like cogs working in different directions": a longitudinal qualitative study on Long COVID healthcare services in the United Kingdom from a person-centred lens.

BACKGROUND: The COVID-19 pandemic has presented significant challenges to the already over-stretched healthcare system in the United Kingdom (UK). These challenges are particularly pronounced for people living with the novel condition of Long COVID (LC) as they often face persistent and fluctuating symptoms, encountering prolonged uncertainty when seeking medical support. Despite a growing understanding of the healthcare challenges associated with LC, existing qualitative studies have predominantly focused on individual experiences rather than examining the structural aspects of healthcare. METHODS: A longitudinal qualitative study with 80 participants and 12 healthcare practitioners was conducted in the UK to explore the healthcare experiences of those with LC. In total, 178 interviews (with attrition) were collected across two rounds, from November 2021 to March 2022, and from June to October 2022. RESULTS: Embracing a person-centred framework that recognises and nurtures interconnected individual, relational, and existential needs, we investigated healthcare experiences related to LC across primary, secondary, and specialist integrated care. Using this perspective, we identified three overarching themes. Theme 1 addresses the persistent hurdle of accessing primary care as the initial point of contact for LC healthcare; Theme 2 underscores the complexity of navigating secondary care; and Theme 3 encapsulates the distinctive challenges of developing LC integrated care. These themes are interlinked, as people with LC often had to navigate or struggle between the various systems, with practitioners seeking to collaborate across the breadth of their professional responsibilities. CONCLUSION: From a person-centred approach, we were able to identify the needs of those affected by lasting LC symptoms and comprehend how health services intricately influence these needs. The focus on healthcare systems also captures the nuanced impact that continuing healthcare struggles can have on people's identity. As such, our findings provide evidence to inform a more effective and sustainable delivery of person-centred care for people with LC across various healthcare settings and over time.

The Role of Metacognition in the Prediction of Depressive and Anxiety Symptoms in Chronically Ill Patients.

INTRODUCTION: Cancer, diabetes, and heart diseases are frequent causes of depression and anxiety. The study explored the metacognitive beliefs manifested by chronically ill patients and the presence of depressive or anxiety symptoms and the predictive role of metacognition in both. METHODS: A total of 254 chronically ill patients participated in the study. The Metacognitive Questionnaire was used to measure the patients' metacognitive beliefs, whereas the Hospital Anxiety and Depression Scale was applied to evaluate their psychopathological symptoms. A correlation analysis was performed to explore the relationships between metacognition and psychopathological symptoms. Regression analyses were conducted to examine the predictive role of metacognition in anxiety and depression. RESULTS: The Negative Beliefs about Uncontrollability and Danger scale correlated with both anxiety and depression scales, and the Cognitive Confidence scale correlated with the depression scale. Linear regression analyses indicated that metacognitive beliefs were responsible for 32.2% of the variance of anxiety symptoms among all the chronically ill. Metacognitive beliefs accounted for 48.8% of the variance in anxiety symptoms and 36.6% in depressive symptoms among diabetes patients. CONCLUSIONS: There are specific correlations between psychopathological symptoms and metacognition among chronically ill patients. Metacognitions have a moderate role in developing and sustaining anxiety and depressive symptoms.

Progressive Impairment of Prepubertal Growth in Children With APECED.

CONTEXT: Subjects with autoimmune polyendocrinopathy-candidiasis-ectodermal dystrophy (APECED) have subnormal adult height. There are several potential APECED-related risk factors for suboptimal height attainment during childhood. OBJECTIVE: To determine the growth patterns in children with APECED. DESIGN: Retrospective longitudinal study. SETTING: The Finnish national APECED cohort. PATIENTS: 59 children with APECED. MAIN OUTCOME MEASURES: Length/height and weight z-scores from birth to the end of prepuberty. RESULTS: Collectively, 59 children [30 (51%) girls] were included. Their median birth weight z-score (-0.60) was below the population average; 12 (20%) patients were born small for gestational age. Height attainment progressively declined from birth until the end of prepuberty (z-score -1.95), whereas weight-for-height z-score did not (+0.26). Of the 59 patients, 38 (64%) had all height z-scores below 0 during prepuberty, and seven (12%) had z-scores below -2.0. Age at the end of prepuberty, number of APECED manifestations, duration of glucocorticoid treatment, and growth hormone deficiency correlated negatively with height z-score at the end of prepuberty (p < 0.0001; p = 0.041; p = 0.013; p = 0.034, respectively). CONCLUSIONS: Children with APECED had a progressive growth impairment from birth through prepuberty. Multiple predisposing risk factors were recognized, including disease severity and growth hormone deficiency. Timely interventions are needed to ensure optimal height attainment and new treatment options need to be developed.

A Technological Tool Aimed at Self-Care in Patients With Multimorbidity: Cross-Sectional Usability Study.

BACKGROUND: Information and communication technologies (ICTs) have been positioned as useful tools to facilitate self-care. The interaction between a patient and technology, known as usability, is particularly important for achieving positive health outcomes. Specific characteristics of patients with chronic diseases, including multimorbidity, can affect their interaction with different technologies. Thus, studying the usability of ICTs in the field of multimorbidity has become a key element to ensure their relevant role in promoting self-care. OBJECTIVE: The aim of this study was to analyze the usability of a technological tool dedicated to health and self-care in patients with multimorbidity in primary care. METHODS: A descriptive observational cross-sectional usability study was performed framed in the clinical trial in the primary care health centers of Madrid Health Service of the TeNDER (Affective Based Integrated Care for Better Quality of Life) project. The TeNDER technological tool integrates sensors for monitoring physical and sleep activity along with a mobile app for consulting the data collected and working with self-management tools. This project included patients over 60 years of age who had one or more chronic diseases, at least one of which was mild-moderate cognitive impairment, Parkinson disease, or cardiovascular disease. From the 250 patients included in the project, 38 agreed to participate in the usability study. The usability variables investigated were effectiveness, which was determined by the degree of completion and the total number of errors per task; efficiency, evaluated as the average time to perform each task; and satisfaction, quantified by the System Usability Scale. Five tasks were evaluated based on real case scenarios. Usability variables were analyzed according to the sociodemographic and clinical characteristics of patients. A logistic regression model was constructed to estimate the factors associated with the type of support provided for task completion. RESULTS: The median age of the 38 participants was 75 (IQR 72.0-79.0) years. There was a slight majority of women (20/38, 52.6%) and the participants had a median of 8 (IQR 7.0-11.0) chronic diseases. Thirty patients completed the usability study, with a usability effectiveness result of 89.3% (134/150 tasks completed). Among the 30 patients, 66.7% (n=20) completed all tasks and 56.7% (17/30) required personalized help on at least one task. In the multivariate analysis, educational level emerged as a facilitating factor for independent task completion (odds ratio 1.79, 95% CI 0.47-6.83). The median time to complete the total tasks was 296 seconds (IQR 210.0-397.0) and the median satisfaction score was 55 (IQR 45.0-62.5) out of 100. CONCLUSIONS: Although usability effectiveness was high, the poor efficiency and usability satisfaction scores suggest that there are other factors that may interfere with the results. Multimorbidity was not confirmed to be a key factor affecting the usability of the technological tool. TRIAL REGISTRATION: Clinicaltrials.gov NCT05681065; https://clinicaltrials.gov/study/NCT05681065.

Integrating palliative care in patients with advanced multiple sclerosis: a scoping review.

BACKGROUND: Multiple sclerosis (MS) often presents a long and uncertain evolution. Treatment decisions in advanced MS are supported by robust evidence, but recent guidelines have suggested a shift to a palliative approach as the disease progresses. This study aims to describe what is known about the integration of palliative care (PC) in patients with severe MS (cost-effectiveness, moment of reference, and perspective of stakeholders). METHODS: A scoping review was developed, and the Scopus, Medline (PubMed), ISI Web of Knowledge, and SAGE databases were consulted, using the key terms: "multiple sclerosis" AND "palliative care". Studies on the perspectives of patients, caregivers, and health professionals regarding the integration of PC in MS were included. No restrictions were applied regarding the subtype of MS, gender, ethnicity, frequency of use of health services, and language. RESULTS: Of 158 articles identified, 19 were included in the review. Key factors were identified, such as the effectiveness of PC intervention in severe MS, the financial impact of providing PC compared to conventional care, the reduction of symptoms and caregiver burden, and the perception of unmet needs by users, health professionals, and caregivers during the PC approach. CONCLUSIONS: Patients with MS should have access to specialized PC when they reach the severe phase of the disease. Providing a multidisciplinary team to provide targeted consultations based on the patient's needs may be most appropriate. These issues have important implications for the future planning and provision of PC services.

Brief parenting intervention (Triple P) for families of children with eczema: a randomized controlled trial.

OBJECTIVE: To evaluate the efficacy and costs of a brief, group-delivered parenting intervention for families of children with eczema. METHODS: A randomized controlled trial design was used. Families attending the Queensland Children's Hospital and from the community (n = 257) were assessed for eligibility (child 2-10 years, diagnosed with eczema, prescribed topical corticosteroids). Families who consented to participate (N = 59) were assessed at baseline for clinician-rated eczema severity, parent-reported eczema symptom severity, and electronically-monitored topical corticosteroid adherence (primary outcomes); and parenting behavior, parents' self-efficacy and task performance when managing eczema, eczema-related child behavior problems, and child and parent quality of life (secondary outcomes). Families were randomized (1:1, unblinded) to intervention (n = 31) or care-as-usual (n = 28). The intervention comprised two, 2-hr Healthy Living Triple P group sessions (face-to-face/online) and 28 intervention families attended one/both sessions. All families were offered standardized eczema education. Families were reassessed at 4-weeks post-intervention and 6-month follow-up, with clinician-raters blinded to condition. Costs of intervention delivery were estimated. RESULTS: Multilevel modeling across assessment timepoints showed significant intervention effects for ineffective parenting (d = .60), self-efficacy (d = .74), task performance (d = .81), and confidence with managing eczema-related child behavior (d = .63), but not disease/symptom severity, treatment adherence or quality of life. Mean cost per participating family with parenting behavior (clinically) improved was $159. CONCLUSIONS: Healthy Living Triple P is effective in reducing ineffective parenting practices and improving parents' self-efficacy and task performance when managing children's eczema and eczema-related behavior difficulties. There was no effect on disease/symptom severity, treatment adherence, or quality of life. CLINICAL TRIAL REGISTRATION: ACTRN12618001332213.

Concerns of Primary Caregivers of Children with Complex Chronic Conditions in Kerala: A Qualitative Analysis.

Objectives: Exploring data on primary caregiver experiences of dealing with chronically ill children (CIC) strengthens the ability of paediatricians to improve the quality of care by detecting unmet needs in paediatric palliative care and understanding their original concerns instead of presumed needs. Hence, this study aims to identify and describe the primary concerns and challenges faced by caregivers of children with complex chronic conditions in a tertiary care hospital in Kerala. Materials and Methods: Primary caregivers of 25 children aged <13 years with non-malignant life-limiting illnesses, admitted to the paediatric department of a government medical college in Kerala between 1 July 2021 and 28 February 2022, underwent in-depth interviews to analyse their most worrisome issues. Thematic analysis was the method chosen for qualitative data analysis. Results: The main themes identified were medical issues, unmet needs, caregiver health issues, and social and financial issues. Among the medical issues, poor seizure control and infected bedsores, sleep deprivation in both patient as well as caregivers, and difficulty in maintaining the personal hygiene of patients were the major issues. Parents of almost all the CICs reported that they required diapers more than any other material or device. Maternal depression was the major caregiver health issue. The unavailability of antiepileptic drugs in peripheral health centres resulted in missing doses and undue expenses for travel to tertiary centres to obtain the same. Caregivers reported their dismay when they finally realised that they were given false hopes of a cure by different systems of medicine. Conclusion: The challenges faced by caregivers of children with complex chronic conditions are multifaceted. Their most problematic issues related to medical issues are the occurrence of breakthrough seizures and development of infected bedsores. The most important material hardship reported was diaper needs. Caregiver issues such as sleep deprivation and maternal depression must be identified and addressed while providing comprehensive palliative care.

Assisted Suicide and Slippery Slopes: Reflections on Oregon.

Slippery slope argumentation features prominently in debates over assisted suicide. The jurisdiction of Oregon features prominently too, especially as regards parliamentary scrutiny of assisted suicide proposals. This paper examines Oregon's public data (including certain official pronouncements) on assisted suicide in light of the two basic versions of the slippery slope argument, the empirical and moral-logical versions. Oregon's data evidences some normatively interesting shifts in its assisted suicide practice which in turn prompts consideration of two elements of moral-logical slippage that are not widely discussed. One is slippage from an initial autonomy-based public justification for assisted suicide which does not include burden-based concerns within its operative account of voluntariness to an evolved public justification that does. The other is an expansion of a terminal illness ground to include chronic illnesses effectively rendered terminal via a refusal of treatment.

Sleep duration and association with cardiometabolic health in adolescents and adults with type 1 diabetes: Results from the BCQR-T1D study.

AIM: Type 1 diabetes (T1D) increases the risk of morbidity and mortality from cardiovascular disease, and insufficient sleep is prevalent. Emerging evidence suggests a link between sleep and cardiometabolic health, but this has not been examined across the lifespan in individuals with T1D. We aimed to examine associations between sleep and cardiometabolic health in adolescents and adults with T1D in a secondary analysis of data from a 4-week double-blind, random-order, placebo-controlled crossover trial of bromocriptine quick release (BCQR) therapy with a 4-week washout in between conditions. MATERIALS AND METHODS: Forty-two adults (19-60 years) and 42 adolescents (12-18 years) with T1D >9 months completed 1 week of home monitoring with wrist-worn actigraphy to estimate sleep duration and continuous glucose monitoring, anthropometrics, arterial stiffness, magnetic resonance imaging (adolescents only), and fasting laboratory testing at each treatment phase. RESULTS: Sixty-two per cent of adolescents and 74% of adults obtained <7 h of sleep per night at baseline. After adjustment for age, sex and diabetes duration, baseline sleep <7 h per night was associated with a higher body mass index, a higher waist circumference, a higher systolic blood pressure, worse arterial stiffness and a lower estimated insulin sensitivity (all p < .05). When examined by age group, associations between sleep duration and cardiometabolic health outcomes remained significant, predominantly for adolescents. In adolescents only, wake time was significantly later (p = .027) and time in bed was significantly longer with BCQR versus placebo (p = .049). CONCLUSIONS: Objectively measured sleep <7 h per night was prevalent in adolescents and adults with T1D and associated with poorer cardiometabolic health markers. Small changes in sleep were seen following BCQR treatment in adolescents only. Sleep may be an important and novel target for improving cardiometabolic health in individuals with T1D.

Wellness in Chronic Care (WCC) families, illness & disability: an integrative clinical intervention model.

This paper describes the Wellness in Chronic Care (WCC) model, an innovative integrative clinical intervention method aimed at helping social workers manage the care of patients living with chronic illnesses and their families. The goal is to propose appropriate clinical responses to the changing reality of the health system. This new reality poses new challenges that require caregivers (social work practitioners and family members) to develop suitable skills and expertise. The intervention method we developed offers a new paradigm that entails partnership and the need to assume responsibility in decision-making while coping with the illness over time. The intervention provides practical tools and methods for coping and managing the illness. These factors have contributed to building a specifically tailored intervention program for patient and family care to achieve an effective and meaningful wellbeing. An assessment of the training program of the intervention model and its implementation is presented. The model was found to be essential yet some found it difficult to make the needed changes.

Trust in the Transplant Team Associated With the Level of Chronic Illness Management-A Secondary Data Analysis of the International BRIGHT Study.

A trustful relationship between transplant patients and their transplant team (interpersonal trust) is essential in order to achieve positive health outcomes and behaviors. We aimed to 1) explore variability of trust in transplant teams; 2) explore the association between the level of chronic illness management and trust; 3) investigate the relationship of trust on behavioral outcomes. A secondary data analysis of the BRIGHT study (ID: NCT01608477; https://clinicaltrials.gov/ct2/show/NCT01608477?id=NCT01608477&rank=1) was conducted, including multicenter data from 36 heart transplant centers from 11 countries across four different continents. A total of 1,397 heart transplant recipients and 100 clinicians were enrolled. Trust significantly varied among the transplant centers. Higher levels of chronic illness management were significantly associated with greater trust in the transplant team (patients: AOR= 1.85, 95% CI = 1.47-2.33, p < 0.001; clinicians: AOR = 1.35, 95% CI = 1.07-1.71, p = 0.012). Consultation time significantly moderated the relationship between chronic illness management levels and trust only when clinicians spent ≥30 min with patients. Trust was significantly associated with better diet adherence (OR = 1.34, 95%CI = 1.01-1.77, p = 0.040). Findings indicate the relevance of trust and chronic illness management in the transplant ecosystem to achieve improved transplant outcomes. Thus, further investment in re-engineering of transplant follow-up toward chronic illness management, and sufficient time for consultations is required.

The Báa nnilah Program: Results of a Chronic-Illness Self-Management Cluster Randomized Trial with the Apsáalooke Nation.

Indigenous people in Montana are disproportionately affected by chronic illness (CI), a legacy of settler colonialism. Existing programs addressing CI self-management are not appropriate because they are not consonant with Indigenous cultures in general and the Apsáalooke culture specifically. A research partnership between the Apsáalooke (Crow Nation) non-profit organization Messengers for Health and Montana State University co-developed, implemented, and evaluated a CI self-management program for community members. This article examines qualitative and quantitative program impacts using a pragmatic cluster randomized clinical trial design with intervention and waitlist control arms. The quantitative and qualitative data resulted in different stories on the impact of the Báa nnilah program. Neither of the quantitative hypotheses were supported with one exception. The qualitative data showed substantial positive outcomes across multiple areas. We examine why the data sets led to two very different stories, and provide study strengths and limitations, recommendations, and future directions.

Symptom and Technology Management Intervention Usefulness for Caregivers of Children With Tracheostomies and Feeding Tubes.

BACKGROUND: Caregivers of children who require medical technology of tracheostomies and feeding tubes provide intensive and specialized care at home. They have extensive training in the hospital prior to their child's discharge; however, there is limited education about their child's care once they are at home. The Creating Opportunities for Personal Empowerment: Symptom and Technology Management Resources intervention focused on commonly experienced symptoms and technology used at home by caregivers. OBJECTIVE: We present the findings from the intervention exit interviews to gain insight about the intervention from caregiver perspectives, notably their perceptions of usefulness, ease of use, and acceptability. METHODS: A qualitative descriptive design was used to examine caregivers' perceptions of the intervention in exit interviews. These interviews were conducted upon completion of the intervention as part of feasibility testing. RESULTS: Sixteen caregivers completed the study and participated in exit interviews. Caregivers described the themes of the best that you can do, a reminder that I am doing it the right way, and I wish I had these when my child first had the tracheostomy and feeding tube. Caregivers also provided feedback about the intervention's usefulness and suggestions for further refinement and future adaptations of the intervention. CONCLUSIONS: Caregivers provided valuable insights about the intervention, describing its usefulness to them, the potential for usefulness for other caregivers of these children, and their experiences with care of their children at home. Future plans include efficacy testing and modifications to enhance the intervention based on caregiver feedback.

Validation of the Sibling Perception Questionnaire in healthy siblings of children with chronic illnesses.

The purpose of the study was to assess the psychometric properties of the parent-report version of the Sibling Perception Questionnaire (SPQ) in well-siblings. Participants were 200 caregivers of healthy children ages 9-17 years who had a sibling (ages 0-18 years) diagnosed with cancer, diabetes, cystic fibrosis, epilepsy, spina bifida, or congenital heart disease. The SPQ had acceptable internal consistency reliability for the total score (α = 0.83) and displayed acceptable convergent validity as evidenced by medium to large positive correlations with the Strengths and Difficulties Questionnaire and Pediatric Quality of Life Inventory 4.0 (r's ranged from 0.39 to 0.56). The original four-factor model displayed a poor model fit (CFI = 0.6, RMSEA = 0.11, TLI = 0.55, SRMR = 0.14) in comparison to a revised, 14-item four-factor model (CFI = 0.92, RMSEA = 0.07, TLI = 0.90, SRMR = 0.06). The shortened, 14-item parent-report version of the SPQ largely demonstrated good psychometric properties and has the potential to reduce the burden of caregivers filling out the measure.

Social support and mental well-being among people with and without chronic illness during the Covid-19 pandemic: evidence from the longitudinal UCL covid survey.

PURPOSE: An immediate research priority recovering from the COVID-19 pandemic is well-being among some of our most vulnerable-people with chronic illness. We studied how mental health changed among people with and without chronic illness throughout the pandemic and the mediating role of social support. METHODS: We used the 3-waves of COVID-19 survey within the Millennium Cohort Study (MCS, age 19, N = 5522) and MCS Parent (MCSP, age > > 19, N = 7479) samples, with additional pre-pandemic measures of some outcomes and exposure. Using Structural Equation Panel Models with Full Information Maximum Likelihood estimation to address missing data, we studied differences between respondents with a chronic illness and without, regarding depressive symptoms and mental well-being, with social provision, social support, and loneliness as potential mediators. RESULTS: Mental well-being (SWEMWBS) and psychological distress (Kessler-6) worsened significantly during the pandemic relative to baseline for people with and without chronic illness, while the latter group had substantially better well-being at all waves and the baseline regarding both outcomes. When the lockdown was lifted during wave-2, mental well-being temporarily rebounded, and distress waned among people without chronic illness but continued to worsen among people with chronic illness. Social support partially mediated the link between chronic illness and mental well-being. CONCLUSIONS: The large mental well-being gap between people with and without chronic illness persisted during the pandemic. However, social support and provision can partially narrow this gap, hence should be employed in future pandemic management.

The paradox of haemodialysis: the lived experience of the clocked treatment of chronic illness.

Studies exploring the relationship between time and chronic illness have generally focused on measurable aspects of time, also known as linear time. Linear time follows a predictable, sequential order of past, present and future; measured using a clock and predicated on normative assumptions. Sociological concepts addressing lifecourse disruption following diagnosis of chronic illness have served to enhance the understanding of lived experience. To understand the nuanced relationship between time and chronic illness, however, requires further exploration. Here, we show how the implicit assumptions of linear time meet in tension with the lived experience of chronic illness. We draw on interviews and photovoice work with people with end-stage kidney disease in receipt of in-centre-daytime haemodialysis to show how the clocked treatment of chronic illness disrupts experiences of time. Drawing on concepts of 'crip' and 'chronic' time we argue that clocked treatment and the lived experience of chronic illness converge at a paradox whereby clocked treatment allows for the continuation of linear time yet limits freedom. We use the concept of 'crip time' to challenge the normative assumptions implicit within linear concepts of time and argue that the understanding of chronic illness and its treatment would benefit from a 'cripped' starting point.

Cancer caregivers are primarily motivated by love and sense of duty.

Cancer is a debilitating disease for which patients often need caretakers to help them live their lives and complete basic activities. This study aims to characterize the burden of the caretaker. A 14-question survey was sent out to randomly selected United States cancer caretakers to analyze the social, emotional, and physical burden of their caretaking. The results show that a majority of caretakers are direct family to the patient (69.5%). The patients' cancers are often in early stages with about 54.5% having stage 1 cancer and 22.5% having stage 2 cancer while only 8.5% had stage 3 cancer and 17.8% had stage 4 cancer. When asked about their motivation, caretakers most often do it because of love (58.82%) with family responsibilities/duty being the second highest reason (35.56%). When asked about their biggest burden, many caretakers said that grief was the biggest issue (30.50%) with mental health issues also being troublesome (28%). 75.6% of respondents said that being a cancer caretaker has negatively impacted their mental health from either anxiety (37.29%), depression (33.9%), or other conditions (4.41%). When asked about the negative impacts of being a caregiver, 43.5% stated they faced high financial costs to give care, and 35% stated they met a lack of social support or lost friends. In comparison, 33% stated they had negative physical impacts. The number of participants who face overwhelming or high stress nearly quintupled from baseline, from 13% to 59.5%. This cross-sectional survey of US adults demonstrates that there are clear negative impacts on cancer caregivers on their physical, financial, social, and mental health. These data underscore the importance of taking care of patients' caregivers.