Use of a virtual environment to promote self-management and lifestyle changes in persons with bipolar disorder.

PURPOSE: Self-management and lifestyle interventions are a key factor in treatment outcomes for persons with bipolar disorder (BD). A virtual environment (VE), due to it's ability to provide flexibility of involvement in its platform, may be an alternative to face-to-face treatment to provide support for self-management. The purpose of this study is to explore how a VE, developed for chronic illness self-management, may be modified to promote self-management and lifestyle changes in those with BD. METHOD: This study used a qualitative description design with focus groups. Data were collected via minimally structured interviews and analyzed using thematic content analysis. A total of seven focus groups were conducted, and the sample consisted of 30 adults with BD. Age range was 21-77 years with 21 females, seven males, and two non-binary individuals. RESULTS: Five themes emerged from the findings: Self-management and lifestyle interventions with regards to (1) mental health; (2) holistic health; (3) role of peers; (4) involvement of the family; (5) technological aspects of the VE. CONCLUSIONS: Focus group participants suggested that the VE may be an efficacious way to enhance self-management and promote lifestyle interventions in those with BD. Research is needed to adapt such platforms to the need of the patients and examine its' effect on health outcomes.

An Exploration of Common Dyadic Coping Strategies: A Perspective from Pakistani Couples Living with Chronic Conditions.

This qualitative study was conducted to explore the common dyadic coping (DC) efforts of married couples, with a chronically ill partner. The sample for the study consisted of twelve couples chosen from Gujrat, Pakistan. The semi-structured interviews were conducted with the help of an interview guide and analyzed using thematic analysis (Braun and Clarke, 2006). The following four major themes were emerged: "common problem-focused DC," "common emotion-focused DC," "common religious DC," and "combined pattern of intimate relationships." The findings indicated that partners are not preferring relational coping resources for problem- and emotion-focused DC. However, the majority of couples participate in religious DC process in a complementary way to cope with stressful situation in the result of chronic illness. The study also indicated various indigenous factors, for example, socioeconomic status, family culture, lack of physical resource, and religious standpoints contributing in the lack of connectivity and sexual intimacy. To conclude, the results revealed that future research is required to investigate the patient and partner's relationship in greater depth, focusing on above-mentioned contextual factors.

Prioritizing chronic pain self-management amid coexisting chronic illnesses: An exploratory qualitative study.

Background: In Canada, one out of five people lives with chronic pain, a condition frequently co-occurring with other chronic illnesses. As with most chronic illnesses, successful engagement in symptom management is key. In the context of multiple illnesses, self-management involves daily prioritization of symptoms and conditions and decision-making, which can be challenging. Self-management of chronic illnesses can require more complex competence and tasks to address the different implications of each condition. Objective: Our research objective was to explore types and processes of self-management symptom prioritization among adults living with chronic pain and other chronic illnesses. Design: This research was carried out as part of a larger study that adopted an explanatory sequential mixed-methods design. This study focused more specifically on the qualitative part of the study. Settings: Participants recruited for the qualitative component took part in a semi-structured individual interview online or in-person at the center hospitalier de l'Université de Montréal. Participants: In total, 25 participants were interviewed, including 18 women and 7 men. Methods: To participate in the qualitative part of the study, participants were selected from the larger study and were eligible if they were 18 years old or older and experiencing pain for more than 3 months and had at least one other chronic illness for which they were receiving treatment or engaged in symptom management. Semi-structured interviews were conducted in-person or virtually and were transcribed verbatim. Reflexive thematic analysis was used to explore patients' narratives, and an open and iterative approach was adopted to code interviews and generate themes. Findings: The first theme, focus on symptom prioritization, showed different prioritization processes, including prioritizing a dominant illness, prioritizing multiple illnesses to avoid undesirable consequences, and finally absence of or automatic processes of prioritization. In the second theme, we identified several characteristics of an illness, in this case chronic pain that made it a self-management priority: uncontrollable and disabling nature, omnipresence, unpredictability, unpleasantness, and invisibility to others. In the last theme, we highlighted that some psychosocial factors influenced levels of engagement in self-management and prioritization processes, including social support and the patient-physician relationship. Conclusions: Chronic pain was the medical condition most often prioritized by participants in their self-management tasks. Because of its characteristics, it was the medical condition that had the most negative impact on day-to-day functioning.

Using FLO text-messages to enhance health behaviours and self-management of long-term conditions in South-Asian patients.

Objectives: Cultural and communication differences faced by South-Asian (SA) ethnic minority groups have led to challenges in the delivery of health care and complex management of long-term conditions (LTCs). We aim to explore the use of text-messaging in SA communities, through the Florence (FLO) health messaging system utilised within U.K. health sectors, to enhance positive health behaviours and self-management. Methods: A mixed-methods approach was used for this study involving two phases. Phase 1 includes the administration of the patient activation measure to assess SA patient level of skills, knowledge, and confidence to self-manage their LTC; whilst in Phase 2 semi-structured interviews were conducted, exploring the experiences of users and non-users of FLO text messaging to promote self-management behaviours. Findings: Forty participants (Florence users (n = 20) and non-users (n = 20)) completed the patient activation survey once after using FLO, and took part in interviews. Differences were noted to exist between the two groups (p < .01). Users appeared to have higher activation levels and better self-management behaviours (p < .01 (p = .00). Interviews elicit participants' perceptions of the text messaging system, along with key themes relative to behavioural constructs: socio-demographical factors; influencing behaviour changes, self-management, and uptake of text messages amongst SA ethnic minorities. Conclusion: Text messaging and mHealth are being extensively used amongst general populations to monitor and enhance health. The study of SA patient experiences and their use of text messages within the United Kingdom (UK) remains scarce. Therefore, results from the study identify health beliefs that influence patient engagement with digital health interventions and their self-management. Developing policies and culturally appropriate education guidelines for healthcare practitioners can allow for the provision of culturally sensitive interventions tailored in terms of normative, cultural, and religious beliefs; which in turn will address crucial aspects including SA patient information and educational needs supporting their self-management journey.

A narrative case study of an older disabled Muslim woman during the COVID-19 pandemic in the UK.

This paper explores the experiences and perceptions of Zora, an older Muslim woman living with a disability in the UK. Older disabled Muslim women in the UK often face multiple discriminations based on disability, age, gender, religious, and racial grounds and this has arguably been intensified by the COVID-19 pandemic. Drawing on multiple narrative interviews with Zora, this paper focuses on the intersections of disability, ageing, gender, race and religion within a particular social context during the COVID-19 pandemic in the UK. The paper describes the complex ways in which Zora experienced various modes of everyday disablism which were not related to the COVID-19 virus itself, rather the consequences of the movement restrictions associated with it. Much of the oppression and barriers she described were socially determined, both through direct discrimination, stares and prejudicial attitudes, and indirectly through stigmatization and an embodied fear of the reaction of others in public spaces. Nevertheless, Zora did not present herself as a victim. Instead she portrayed herself in affirmative terms, as a 'brave' woman who resisted and overcame daily social challenges and movement restrictions as part of working toward creating a more accessible, inclusive and age-friendly society. One that is inhabitable for herself and other older disabled women facing an uncertain future.

'Listen to women as if they were your most cherished person': Australian women's perspectives on living with the pain of endometriosis: A mixed-methods study.

This mixed-methods study used an online cross-sectional survey to explore perspectives of 533 adult Australian women living with endometriosis pain, and their relationship with biopsychosocial factors. Four themes were constructed: The primary theme, 'Stigma and change' reflected women's experience of dismissal, and the wish to reverse the narrative of pain as normal. Some women emphasised self-education and self-advocacy to affect change, reflecting the theme 'self-empowerment'. Participants described the 'debilitating impact' of endometriosis and the enduring difficulty of 'inadequate healthcare', reflecting themes three and four. Analysis indicated type of social support may impact perceived outcomes for endometriosis. Hierarchical regression analyses indicated too few significant relationships between biopsychosocial factors and themes to indicate meaningful patterns without risk of common method variance. Future research should explore the influence of social support and interventions which develop participant autonomy and practitioner competence and knowledge, using disease-specific measures over time.

Proactive Identification of Patients with Diabetes at Risk of Uncontrolled Outcomes during a Diabetes Management Program: Conceptualization and Development Study Using Machine Learning.

BACKGROUND: The growth in the capabilities of telehealth have made it possible to identify individuals with a higher risk of uncontrolled diabetes and provide them with targeted support and resources to help them manage their condition. Thus, predictive modeling has emerged as a valuable tool for the advancement of diabetes management. OBJECTIVE: This study aimed to conceptualize and develop a novel machine learning (ML) approach to proactively identify participants enrolled in a remote diabetes monitoring program (RDMP) who were at risk of uncontrolled diabetes at 12 months in the program. METHODS: Registry data from the Livongo for Diabetes RDMP were used to design separate dynamic predictive ML models to predict participant outcomes at each monthly checkpoint of the participants' program journey (month-n models) from the first day of onboarding (month-0 model) up to the 11th month (month-11 model). A participant's program journey began upon onboarding into the RDMP and monitoring their own blood glucose (BG) levels through the RDMP-provided BG meter. Each participant passed through 12 predicative models through their first year enrolled in the RDMP. Four categories of participant attributes (ie, survey data, BG data, medication fills, and health signals) were used for feature construction. The models were trained using the light gradient boosting machine and underwent hyperparameter tuning. The performance of the models was evaluated using standard metrics, including precision, recall, specificity, the area under the curve, the F1-score, and accuracy. RESULTS: The ML models exhibited strong performance, accurately identifying observable at-risk participants, with recall ranging from 70% to 94% and precision from 40% to 88% across the 12-month program journey. Unobservable at-risk participants also showed promising performance, with recall ranging from 61% to 82% and precision from 42% to 61%. Overall, model performance improved as participants progressed through their program journey, demonstrating the importance of engagement data in predicting long-term clinical outcomes. CONCLUSIONS: This study explored the Livongo for Diabetes RDMP participants' temporal and static attributes, identification of diabetes management patterns and characteristics, and their relationship to predict diabetes management outcomes. Proactive targeting ML models accurately identified participants at risk of uncontrolled diabetes with a high level of precision that was generalizable through future years within the RDMP. The ability to identify participants who are at risk at various time points throughout the program journey allows for personalized interventions to improve outcomes. This approach offers significant advancements in the feasibility of large-scale implementation in remote monitoring programs and can help prevent uncontrolled glycemic levels and diabetes-related complications. Future research should include the impact of significant changes that can affect a participant's diabetes management.

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.

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.

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.

Refining Mishel's Reconceptualized Uncertainty in Illness Theory: Explaining the Development of Uncertainty in Chronic Illness.

Background and Purpose: Mishel's Reconceptualized Uncertainty in Illness Theory describes the changed, more positive appraisal of uncertainty over time in a chronic disease. Therefore, Mishel referred to "probabilistic thinking" and "self-organization." The description of these concepts remained highly abstract, limiting the understanding of how change of uncertainty comes about. We aimed to elaborate on this gap and at refining the theory. Methods: We conducted a study consisting of three parts: (a) concept analyses of "probabilistic thinking" and "self-organization," (b) longitudinal qualitative study to investigate uncertainty experience over time, and (c) triangulation of (a) and (b) to develop theoretical propositions. Results: We developed five theoretical propositions in syllogistic form: (a) if persons experience uncertainty, they think probabilistically to assess the existentiality of potential consequences, (b) if they expect existential consequences, they experience uncertainty as a threat, (c) if the existentiality of uncertainty diminishes, then individuals accept uncertainty as an inherent part of illness, (d) if they accept uncertainty, they cognitively reframe it in a positive way in order to promote recovery, and (e) if persons reexperience uncertainty, they reassess the existentiality of potential consequences. Implications for Practice: We propose "health belief" as a mechanism driving "cognitive reframing" to explain the interrelation between uncertainty and a more positive experience. "Existential uncertainty" offers a new perspective on preventing a change in uncertainty experience. The new concepts can provide guidance to take measures to reduce existential uncertainty and promote health beliefs to change the experience of uncertainty from a negative to a more positive one.

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.

"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.

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.

Assessing We-Disease Appraisals of Health Problems: Development and Validation of the We-Disease Questionnaire.

In couples dealing with health problems, we-disease appraisals can influence dyadic coping strategies to alleviate distress. This study describes the development and validation of a self-report scale to assess we-disease appraisals of health problems. The newly developed We-Disease Questionnaire (WDQ) was administered in three samples: parents of children with type 1 diabetes (n = 240) or cancer (n = 125) and individuals with visual impairment and their partners (n = 216). Reliability was measured by coefficient omega. To assess construct validity, correlations with other measures of individual and dyadic adjustment were examined. Descriptive statistics across all samples were compared. A 4-item version of the WDQ demonstrated good reliability and validity and showed meaningful associations with established scales. We-disease appraisals were highest among parents of children with cancer and lowest among couples with visual impairment. The WDQ is a reliable and valid measure that can be used across different health problems.

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.

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.

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.

Factors associated with the level of self-management in elderly patients with chronic diseases: a pathway analysis.

BACKGROUND: To analyze the effects and pathways of factors such as psychological capital, family functioning, and sources of meaning in life on the level of self-management in elderly patients with chronic diseases and to provide a basis for the development of relevant nursing interventions in the future. METHODS: Convenience sampling was used to select elderly patients with chronic diseases who underwent medical checkups and consultations at three community hospitals in Jinzhou city from March 2023 to October 2023, and the self-designed General Information Questionnaire (GIS), Psychological Capital of the Elderly Scale (PCE), Family Functioning Index Questionnaire (APGAR), Sources of Meaning of Life Scale for Older Adults(SMSE), and Self-Management Behavior of Chronic Patients Scale (SMCS) were used. SPSS 26.0 was used for data entry, one-way analysis, Pearson correlation analysis, and multiple linear regression were used to analyze the data, and Amos 17.0 was used to construct the structural equation model. RESULTS: A total of 355 elderly patients with chronic diseases were included, and their self-management score was 74.75 ± 12.93, which was moderate. The results of the influencing factor analysis showed that the influencing factors of the self-management level of elderly chronic disease patients were age, years of illness, psychological capital, family functioning, and sources of meaning in life (p < 0.05). Path analysis revealed that sources of meaning in life were a partial mediator of the relationship between psychological capital and self-management, with an effect value of 0.166 (95% CI: 0.042,0.391), accounting for 37.6% of the total effect; life meaning was a partial mediator of family functioning and self-management level, with an effect value of 0.231 (95% CI: 0.040,0.452), accounting for 54.0% of the total effect. accounting for 54.0% of the total effect. CONCLUSION: The self-management of elderly patients with chronic diseases is intermediate. Healthcare professionals should actively implement holistic healthcare management measures from the family aspect to help patients understand the meaning of life and improve the level of patients' psychological capital to improve the self-management level of elderly patients with chronic diseases.

A Study on the Sense of Parental Competence, Health Locus of Control and Levels of Anxiety, Depression and Somatization in Parents of Children with Type 1 Diabetes: Evidence on a Possible Relationship.

Background: Parents of children with chronic conditions face challenges that go beyond basic care and parenting responsibilities. Parents' experiences can be influenced by perceived stress, emotional experiences, feelings of helplessness, low sense of self-efficacy, anxiety and depression, reducing their quality of life. It is therefore not surprising that parents of children with chronic illnesses are more likely to experience stress, anxiety and depression than parents of healthy children. A prevalent chronic condition is type 1 diabetes. Methods: Parents (31 with children with type 1 diabetes diagnosis and 71 with children without chronic illness) were recruited to complete the measures of the Brief Symptom Inventory-18 (BSI-18), the Parent Health Locus of Control (PHLOC) and Parenting Sense of Competence (PSOC). Results: Significant differences in depression and internal locus of control were found; there was a positive correlation between internal LOC and efficacy in both samples; furthermore, there was a negative correlation between somatization and satisfaction in the experimental group. Conclusions: The ongoing experiences and challenges faced daily make parents perceive themselves as capable. Active involvement in supporting and managing the needs of child with type 1 diabetes could be a source of empowerment for the parent, contributing to the maintenance of their sense of competence. It is important, therefore, to consider the well-being and perception of the parent at a personal level, regardless of the child's situation.