The experience of hope in dyads living with advanced chronic illness in Portugal: a longitudinal mixed-methods study.

BACKGROUND: Hope is an important resource that helps patients and families thrive during difficult times. Although several studies have highlighted the importance of hope in different contexts, its specific manifestations in the realm of advanced chronic illness need further exploration. In this study, we sought to elucidate the intricate interplay between the construct of hope and the lived experience of advanced chronic illness within patient-caregiver dyads. Our objectives were (a) to explore the dyadic experience of hope as a changing dynamic over time for patients living with advanced chronic illness and their informal caregivers and (b) to evaluate variations of hope and symptom burden across time. METHODS: We conducted a longitudinal mixed-methods study with a convergent design between December 2020 and April 2021. Patients living with advanced chronic illness and informal caregivers participated as a dyad (n = 8). The Herth Hope Index scale was used to measure dyads' level of hope and the Edmonton Symptom Assessment System was used to measure patients' symptom burden. Descriptive statistics were undertaken. A thematic analysis as described by Braun and Clarke was conducted to analyze dyadic interview data. Dyads' experience of hope was described by using the six dimensions of hope in the Model of Hope of Dufault and Martocchio. RESULTS: Dyadic scores of hope and patients' symptom burden were stable over time. The constructs of hope in dyads included "Living one day at the time," "Having inner force/strength," and "Maintaining good health." Changes in patterns of hope were captured for each dyad in their transition over time. Data converged for all dyads except one. CONCLUSIONS: The findings of our study show a constant presence of hope even in the face of adversity. Healthcare professionals must find ways to promote hope in dyads of patients living with advanced chronic diseases. Nurses play a pivotal role; dyadic interviews should be promoted to create a safe space for both patients and informal caregivers in order to share experiences. More research is needed to address patients' and informal caregivers' hope in chronic illness because current hope-based interventions primarily target cancer diagnoses.

Reexamination of the relationships among neurocognition, self-defeatist beliefs, experiential negative symptoms, and social functioning in a sample of patients diagnosed with chronic schizophrenia and schizoaffective disorder.

PURPOSE: This study proposed and evaluated a theoretical model for exploring the relationships between neurocognition, self-defeatist beliefs, experiential negative symptoms, and social functioning in individuals with chronic schizophrenia. METHOD: The study recruited 229 individuals given a diagnosis of schizophrenia and schizoaffective disorders from outpatient clinics and the day ward of a mental health hospital. After informed consent was obtained, the participants underwent assessments using the backward digit span, the digit symbol, and measures of self-defeatist beliefs, experiential negative symptoms, and social functioning. A structural equation model was applied to assess the fitness of the hypothesized model, with indices such as the goodness-of-fit index, comparative fit index, root mean square error of approximation, and standardized root mean square residual being used for model evaluation. RESULTS: The hypothesized model had an adequate fit. The study findings indicated that neurocognition might indirectly influence self-defeatist beliefs through its effect on experiential negative symptoms. Contrary to expectations, the study did not observe a direct influence of neurocognition, self-defeatist beliefs, or negative symptoms on social functioning. The revised model revealed the role of experiential negative symptoms in mediating the association between neurocognition and social functioning. However, self-defeatist beliefs did not significantly affect social functioning. DISCUSSION: Before modifying negative thoughts, enhancement of self-awareness ability can help improve negative symptoms and thereby improve the performance of social functions. Future research should develop a hierarchical program of negative symptoms, from cognition rehabilitation to enhancement of self-awareness, and end with modifying maladaptive beliefs.

Assessing health-related quality of life using the Wound-QoL-17 and the Wound-QoL-14-Results of the cross-sectional European HAQOL study using item response theory.

For assessing health-related quality of life in patients with chronic wounds, the Wound-QoL questionnaire has been developed. Two different versions exist: the Wound-QoL-17 and the Wound-QoL-14. For international and cross-cultural comparisons, it is necessary to demonstrate psychometric properties in an international study. Therefore, the aim of this study was to test both questionnaires in a European sample, using item response theory (IRT). Participants were recruited in eight European countries. Item characteristic curves (ICC), item information curves (IIC) and differential item functioning (DIF) were calculated. In both questionnaires, ICCs for most items were well-ordered and sufficiently distinct. For items, in which adjacent response categories were not sufficiently distinct, response options were merged. IICs showed that items on sleep and on pain, on worries as well as on day-to-day and leisure activities had considerably high informational value. In the Wound-QoL-14, the item on social activities showed DIFs regarding the country and age. The same applied for the Wound-QoL-17, in which also the item on stairs showed DIFs regarding age. Our study showed comparable results across both versions of the Wound-QoL. We established a new scoring method, which could be applied in international research projects. For clinical practice, the original scoring can be maintained.

Using Wearables to Study Biopsychosocial Dynamics in Couples Who Cope With a Chronic Health Condition: Ambulatory Assessment Study.

BACKGROUND: Technology has become an integral part of our everyday life, and its use to manage and study health is no exception. Romantic partners play a critical role in managing chronic health conditions as they tend to be a primary source of support. OBJECTIVE: This study tests the feasibility of using commercial wearables to monitor couples' unique way of communicating and supporting each other and documents the physiological correlates of interpersonal dynamics (ie, heart rate linkage). METHODS: We analyzed 617 audio recordings of 5-minute duration (384 with concurrent heart rate data) and 527 brief self-reports collected from 11 couples in which 1 partner had type II diabetes during the course of their typical daily lives. Audio data were coded by trained raters for social support. The extent to which heart rate fluctuations were linked among couples was quantified using cross-correlations. Random-intercept multilevel models explored whether cross-correlations might differ by social contexts and exchanges. RESULTS: Sixty percent of audio recordings captured speech between partners and partners reported personal contact with each other in 75% of self-reports. Based on the coding, social support was found in 6% of recordings, whereas at least 1 partner self-reported social support about half the time (53%). Couples, on average, showed small to moderate interconnections in their heart rate fluctuations (r=0.04-0.22). Couples also varied in the extent to which there was lagged linkage, that is, meaning that changes in one partner's heart rate tended to precede changes in the other partner's heart rate. Exploratory analyses showed that heart rate linkage was stronger (1) in rater-coded partner conversations (vs moments of no rater-coded partner conversations: rdiff=0.13; P=.03), (2) when partners self-reported interpersonal contact (vs moments of no self-reported interpersonal contact: rdiff=0.20; P<.001), and (3) when partners self-reported social support exchanges (vs moments of no self-reported social support exchange: rdiff=0.15; P=.004). CONCLUSIONS: Our study provides initial evidence for the utility of using wearables to collect biopsychosocial data in couples managing a chronic health condition in daily life. Specifically, heart rate linkage might play a role in fostering chronic disease management as a couple. Insights from collecting such data could inform future technology interventions to promote healthy lifestyle engagement and adaptive chronic disease management. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/13685.

"How long is life worth living for the horse?" A focus group study on how Austrian equine stakeholders assess quality of life for chronically ill or old horses.

BACKGROUND: Quality of life (QoL) provides a comprehensive concept underpinning veterinary decision-making that encompasses factors beyond physical health. It becomes particularly pertinent when seeking responsible choices for chronically ill or old horses that emphasise their well-being and a good QoL over the extension of life. How different stakeholders use the concept of QoL is highly relevant when considering the complexity of these decisions in real-life situations. METHODS: Seven focus group discussions (N = 39) were conducted to gain insights into how stakeholders assess and use equine QoL in veterinary care decisions for chronically ill and/or old horses. The discussions included horse owners (n = 17), equine veterinarians (n = 7), veterinary officers (n = 6), farriers (n = 4), and horse caregivers (n = 5). The combination of deductive and inductive qualitative content analysis of the group discussions focused on identifying both similarities and differences in the views of these groups regarding QoL for old and/or chronically ill horses. RESULTS: Findings show agreement about two issues: the importance of the individuality of the horse for assessing QoL and the relevance of QoL in making decisions about veterinary interventions. We identified differences between the groups with respect to three issues: the time required to assess QoL, stakeholders' contributions to QoL assessments, and challenges resulting from those contributions. While owners and caregivers of horses emphasised their knowledge of a horse and the relevance of the time they spend with their horse, the veterinarians in the study focused on the differences between their own QoL assessments and those of horse owners. In response to challenges regarding QoL assessments and decision-making, stakeholders described different strategies such as drawing comparisons to human experiences. CONCLUSIONS: Differences between stakeholders regarding equine QoL assessments contribute to challenges when making decisions about the care of chronically ill or old horses. The results of this study suggest that individual and collaborative reflection about a horse's QoL should be encouraged, for example by developing practicable QoL assessment tools that support relevant stakeholders in this process.

Ageing with chronic conditions and older persons' experience of social connections: a qualitative descriptive study.

Background Chronic conditions may limit older peoples' social engagement and wellbeing. Reduced social connections can result in loneliness and social isolation. This study aimed to explore the experience of social connection in older people living with chronic conditions, and the factors influencing their social participation. Methods A purposive sample of 19 community-dwelling older Australians (mean age 75.5years) with one or more chronic conditions participated in a qualitative descriptive study. Semi-structured interviews explored participants' perceptions of their social connections and the potential impact of their chronic conditions. Views about the role of general practice in supporting older persons' wellbeing were discussed. Data were analysed inductively using thematic analysis. Results Five themes were identified: (1) the experience of loneliness, (2) managing diminishing social contacts, (3) living with chronic conditions, (4) barriers to social connection, and (5) facilitators of social connection. Participants felt that ageing with chronic conditions contributed to loss of function and independence, which limited social connections, and increased loneliness and social isolation. Barriers to social connections included issues with mobility, transport and forming new networks. Families were a primary support, with continued community engagement and general practice support crucial to staying well and socially connected. Conclusions Understanding older peoples' experiences, and the barriers and facilitators of social connections can guide clinicians' interventions. General practice is a promising intervention point because of its high use by those with chronic conditions to stay well. General practice nurses are well-placed to collaboratively address the barriers older people face in maintaining social connections.

Responsibility endowing power: A theoretical framework of health empowerment for Chinese older people with chronic illness.

AIM: To construct a health empowerment framework for the Chinese older people with chronic conditions. DESIGN: A Strussian grounded theory design was selected to generate the theoretical framework. METHODS: Data were collected from 53 community-dwelling older people with chronic conditions in China between November 2017 and August 2019, via semi-structured interviews and with participating observation. The constant comparative method identified the key categories. RESULTS: 'Responsibility endowing power', the health empowerment core theme, was defined as initiating, performing and realizing responsibility towards health through the interaction between the self, family and society. The framework enriches the meaning of health empowerment, changing older people's nursing practice.

Effect of community-based public health service on health-related quality of life among middle-aged and older adults with chronic diseases in China.

BACKGROUND: The growing prevalence of non-communicable chronic diseases poses a significant public health challenge globally, particularly impacting the well-being of aging populations. This study aims to assess the impact of community-based public health service (PHS) on the health-related quality of life (HRQoL) among middle-aged and older adults with chronic diseases in China. METHODS: Utilizing data from the China Health and Retirement Longitudinal Study, we constructed a novel scale based on the 36-Item Short Form Health Survey (SF-36) to measure the HRQoL of middle-aged and older patients with hypertension and/or type-2 diabetes. Multivariate linear regression models with Instrument Variables and Propensity Score Matching techniques were applied to examine the effect of PHS on the HRQoL of identified chronic disease patients. RESULTS: Among 8,403 hypertensive and/or diabetic patients, only 10.98% had received PHS. After adjusting for covariates, PHS exhibited a significant association with an elevated overall SF-36 score (ß = 3.539, p < 0.001). Similar effects were observed in the physical and mental component summary scores, with increases of 1.982 (p < 0.001) and 5.095 (p < 0.001), respectively. Sensitive analysis affirmed the robustness of these findings. Heterogeneity analysis revealed significant HRQoL improvements among males, females, those aged 70 and older, patients with comorbidities, and urban residents, while the effect was less pronounced in the middle-aged, those without comorbidities, or rural dwellers. CONCLUSION: Community-based PHS has exerted a positive impact on both the physiological and psychological aspects of HRQoL among middle-aged and older chronic disease patients, with effects varying among individuals with different characteristics. Our findings advocate for enhancing the delivery and utilization of government-funded PHS, increasing health literacy, and promoting early prevention strategies for chronic diseases. Furthermore, targeted health management initiatives for patients with comorbidities and enhancements in the quality of community healthcare services, particularly in rural areas, are deemed necessary.

Suicidal Ideation and Attempts Among Youth With Physical-Mental Comorbidity in Canada: Proposal for an Epidemiological Study.

BACKGROUND: Evidence suggests that having a chronic physical illness (CPI; eg, asthma, diabetes, and epilepsy) is an independent risk factor for suicidality (ie, suicidal ideation or attempts) among youth. Less is known about the mechanisms linking CPI and suicidality. Some evidence suggests that mental illness (eg, depression and anxiety) or neurodevelopmental disorder (eg, attention-deficit/hyperactivity disorder) mediates or moderates the CPI-suicidality association. Missing from the knowledge base is information on the association between having co-occurring CPI and mental illness or neurodevelopmental disorder (MIND) on youth suicidality. OBJECTIVE: This study uses epidemiological data from the 2019 Canadian Health Survey of Children and Youth (CHSCY) to study the intersection of CPI, MIND, and suicidality in youth. We will estimate prevalence, identify predictors, and investigate psychosocial and service use outcomes for youth with CPI-MIND comorbidity versus other morbidity groups (ie, healthy, CPI only, and MIND only). METHODS: Conducted by Statistics Canada, the CHSCY collected data from 47,850 children (aged 1-17 years) and their primary caregiving parent. Measures of youth CPI, MIND, family environment, and sociodemographics are available using youth and parent informants. Information on psychiatric services use is available via parent report and linkage to national administrative health data found in the National Ambulatory Care Reporting System and the Discharge Abstract Database, which allow the investigation of hospital-based mental health services (eg, emergency department visits, hospitalizations, and length of stay in hospital). Questions about suicidality were restricted to youths aged 15-17 years (n=6950), which form our analytic sample. Weighted regression-based analyses will account for the complex survey design. RESULTS: Our study began in November 2023, funded by the American Foundation for Suicide Prevention (SRG-0-008-22). Access to the linked CHSCY microdata file was granted in May 2024. Initial examination of CHSCY data shows that approximately 20% (1390/6950) of youth have CPI, 7% (490/6950) have MIND, 7% (490/6950) seriously considered suicide in the past year, and 3% (210/6950) had attempted suicide anytime during their life. CONCLUSIONS: Findings will provide estimates of suicidality among youth with CPI-MIND comorbidity, which will inform intervention planning to prevent loss of life in this vulnerable population. Modeling correlates of suicidality will advance understanding of the relative and joint effects of factors at multiple levels-information needed to target prevention efforts and services. Understanding patterns of psychiatric service use is vital to understanding access and barriers to services. This will inform whether use matches need, identifying opportunities to advise policy makers about upstream resources to prevent suicidality. Importantly, findings will provide robust baseline of information on the link between CPI-MIND comorbidity and suicidality in youth, which can be used by future studies to address questions related to the impact of the COVID-19 pandemic and associated countermeasures in this vulnerable population of youth. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/57103.

AI Hesitancy and Acceptability-Perceptions of AI Chatbots for Chronic Health Management and Long COVID Support: Survey Study.

Background: Artificial intelligence (AI) chatbots have the potential to assist individuals with chronic health conditions by providing tailored information, monitoring symptoms, and offering mental health support. Despite their potential benefits, research on public attitudes toward health care chatbots is still limited. To effectively support individuals with long-term health conditions like long COVID (or post-COVID-19 condition), it is crucial to understand their perspectives and preferences regarding the use of AI chatbots. Objective: This study has two main objectives: (1) provide insights into AI chatbot acceptance among people with chronic health conditions, particularly adults older than 55 years and (2) explore the perceptions of using AI chatbots for health self-management and long COVID support. Methods: A web-based survey study was conducted between January and March 2023, specifically targeting individuals with diabetes and other chronic conditions. This particular population was chosen due to their potential awareness and ability to self-manage their condition. The survey aimed to capture data at multiple intervals, taking into consideration the public launch of ChatGPT, which could have potentially impacted public opinions during the project timeline. The survey received 1310 clicks and garnered 900 responses, resulting in a total of 888 usable data points. Results: Although past experience with chatbots (P<.001, 95% CI .110-.302) and online information seeking (P<.001, 95% CI .039-.084) are strong indicators of respondents' future adoption of health chatbots, they are in general skeptical or unsure about the use of AI chatbots for health care purposes. Less than one-third of the respondents (n=203, 30.1%) indicated that they were likely to use a health chatbot in the next 12 months if available. Most were uncertain about a chatbot's capability to provide accurate medical advice. However, people seemed more receptive to using voice-based chatbots for mental well-being, health data collection, and analysis. Half of the respondents with long COVID showed interest in using emotionally intelligent chatbots. Conclusions: AI hesitancy is not uniform across all health domains and user groups. Despite persistent AI hesitancy, there are promising opportunities for chatbots to offer support for chronic conditions in areas of lifestyle enhancement and mental well-being, potentially through voice-based user interfaces.

The burden of secrecy in the management of multimorbidity in older people living with HIV aged 70 and over.

The secrecy surrounding HIV continues to be a major concern for older people living with HIV (OPWH) despite their long-term experience of HIV and the presence of other chronic diseases. Our study aims to highlight how the secrecy surrounding HIV can affect the management of the other conditions. The results of this socio-anthropological sub-study of the ANRS EP66 SEPTAVIH study, which assesses frailty in OPWH, are based on in-depth interviews conducted with 20 OPWH with multimorbidities aged 70 years and over and 9 caregivers. Based on a cross-sectional thematic analysis, this study shows that HIV infection differs from other chronic diseases due to the secrecy and stigma associated with HIV. These specific issues associated with HIV complicate the lives of OPWH, depriving them of support from loved ones and forcing them to exclude their general practitioner from their care system. This then causes OPWH with multiple chronic diseases to become socially vulnerable and isolated. Interventions that support the sharing of information on HIV among OPWH and also among caregivers need to be identified as a matter of urgency in order to improve the lives and management of OPWH with multimorbidities.Trial Registration: ClinicalTrials.gov identifier: NCT03958786.

On the ability of the SF-6D to capture the consequences of chronic illnesses on subjective well-being: Evidence from France.

Using cross-sectional data from a representative sample of the French population (the 2008 Disability Health survey), this paper examines whether the SF-6D, a widely used preference-based measure of health-related quality of life in economic evaluations, fully captures the variation in subjective well-being (SWB) due to chronic illnesses. We conduct a mediation analysis to disentangle the direct and indirect, through the SF-6D, effects of various chronic conditions on SWB (happiness). Our results show that the SF-6D reflects changes in happiness due to most illnesses except mental illness. Changes in SWB mediated by the SF-6D account for 74% of the total effect. The variation unexplained by the SF-6D is significant and increases substantially in the presence of multimorbidity when a chronic illness is combined with anxiety or depression. Overall, our results suggest that the SF-6D incompletely captures the subjective experience of chronically ill patients, especially those with comorbid conditions.

Validating the Ontario Child Health Study Emotional Behavioural Scales-Brief Version (OCHS-EBS-B) in children with chronic physical illness.

BACKGROUND: A substantial proportion of children have a physical illness; these children commonly experience physical-mental comorbidity. To assess child mental health, brief scales that can be used in clinical and research settings are needed. This study assessed the validity and reliability of parent-reported Ontario Child Health Study Emotional Behavioural Scale-Brief Version (OCHS-EBS-B) scores. METHODS: Data come from a longitudinal study of children aged 2-16 years with a physical illness recruited from outpatient clinics at a pediatric hospital. Confirmatory factor analysis and McDonald's coefficient assessed the factor structure and internal consistency reliability of the OCHS-EBS-B, respectively. Point biserial correlations assessed agreement between the OCHS-EBS-B and Mini International Neuropsychiatric Interview for Children and Adolescents (MINI-KID), a structured diagnostic interview. The Wilcoxon rank sum test compared OCHS-EBS-B scores between children with versus without physical-mental comorbidity (known-group validity). RESULTS: The three-factor structure of the OCHS-EBS-B was replicated in this sample of children with physical illness (χ2 = 196.23(272), p < 0.001; CFI = 0.98; TLI = 0.98; SRMR = 0.06; RMSEA [90% CI] = 0.034 [0.027, 0.044]). It had excellent internal consistency reliability (ω = 0.86-0.92) and was moderately correlated with the MINI-KID (baseline: rpb = 0.43-0.51; 6 months: rpb = 0.55-0.65). OCHS-EBS-B scores were significantly higher among children with versus without physical-mental comorbidity. CONCLUSIONS: Findings confirm psychometric evidence that the OCHS-EBS-B is a valid and reliable measure of mental health in children with chronic physical illness. Its brevity and robust psychometric properties make the OCHS-EBS-B a strong candidate for routine use in integrated pediatric physical and mental health services.

Development and validation of a mental hyperactivity questionnaire for the evaluation of chronic stress in higher education.

BACKGROUND: Examination and understanding of neural hyperactivity are some of the greatest scientific challenges faced in the present day. For this reason, the present study aimed to examine this phenomenon in the context of higher education. METHOD: Likewise, this work will enable an instrument to be created to appropriately and reliably estimate neural hyperactivity associated with chronic stress in university students undertaking a Physiotherapy degree. RESULTS: Analysis of content validity was carried out according to agreement and consensus between nineteen experts with Education Science or Psychology degrees, via the Delphi method. On the other hand, face validity was established by administering the questionnaire to a sample of 194 university students aged between 18 and 45 years (M = 30.48%; SD = 13.152). CONCLUSION: The final self-report measure, denominated mental hyperactivity, was composed of 10 items which showed adequate fit with regards to face and content validity (α = 0.775). Confirmatory factor analysis confirmed that the questionnaire was unidimensional.

La teoría de las transiciones como paradigma de apoyo al automanejo en personas con condiciones crónicas / Transitions theory as a paradigm for supporting self-management in people with chronic conditions / A teoria das transições como paradigma para apoiar a autogestão em pessoas com condições crónicas

Resumen Introducción: La experiencia de vivir con una enfermedad crónica no es una tarea sencilla, se requiere de herramientas que permitan aumentar el grado de conciencia para enfrentar las necesidades y superar desafíos sobre el estado de salud y enfermedad. En los últimos años, se ha instaurado el apoyo al automanejo, con la finalidad de potenciar las habilidades en personas con este tipo de afecciones. Resulta trascendental considerar como desde enfermería se puede contribuir al logro de aquello. El objetivo del presente ensayo es reflexionar acerca de la teoría de las transiciones de Meléis como paradigma de apoyo al automanejo en personas con condiciones crónicas. Desarrollo: La teoría de las transiciones de Meléis establece que las personas están en constante cambio, tal como ocurre en el proceso de transición de salud-enfermedad. Recibir el diagnóstico de una enfermedad crónica, conlleva una serie de procesos complejos para la persona, debido a la multiplicidad de variables que ello implica. La teoría de Meléis entrega lineamientos para orientar a la persona profesional de enfermería sobre elementos claves e interrelacionados, como la concepción previa de la naturaleza de la transición y sus condiciones, lo que servirá para la planificación de modalidades de intervención congruentes con las experiencias de la persona y su evaluación en el transcurso del proceso de salud y enfermedad. Conclusión: El paradigma ofrecido por Meléis puede ser considerado un enfoque clave para emprender el proceso de cuidado de enfermería tendiente a apoyar a las personas con enfermedad crónica en el logro del automanejo.

Abstract Introduction: The experience of living with a chronic disease is not a simple task, since it requires tools that allow increasing the degree of awareness to face the needs and overcome challenges about the state of health and disease. In recent years, support for self-management has been established, with the aim of enhancing the skills of people with this type of condition. It is important to consider how the nursing discipline can contribute to achieve this. The aim of this paper is to reflect on Meléis' theory of transitions as a paradigm to support self-management in people with chronic conditions. Development: Meléis' theory of transitions establishes that people are in constant change, as occurs in the health-illness transition process. Receiving the diagnosis of a chronic disease involves a series of complex processes for the person, due to the multiplicity of variables involved. Meléis' theory provides guidelines to orient the nursing professional on key and interrelated elements, such as the previous conception of the nature of the transition and its conditions, which will serve for the planning of intervention modalities congruent with the person's experiences and their evaluation in the course of the health and disease process. Conclusion: The paradigm offered by Meléis can be considered a key approach to undertake the nursing care process aimed at supporting people with chronic illness in achieving self-management.

Resumo Introdução: A experiênca de viver com uma doença crônica não é uma tarefa simple, pois requer ferramentas que permitam aumentar o nível de consciência para enfrentar as necessidades e superar desafios relativos ao estado de saúde e doença. Nos últimos anos, foi estabelecido o apoio à autogestão, com o objetivo de melhorar as habilidades das pessoas com este tipo de condições. É transcendental considerar como a disciplina de Enfermagem pode contribuir para isso. O objetivo deste ensaio é refletir sobre a teoria das transições de Meleis como paradigma de apoio à autogestão em pessoas com condições crônicas. Desenvolvimento: A teoria das transições de Meléis estabelece que as pessoas estão em constante mudança, como acontece no processo de transição saúde-doença. Receber o diagnóstico de uma doença crónica implica uma série de processos complexos para a pessoa, devido à multiplicidade de variáveis envolvidas. A teoria de Meléis fornece directrizes para orientar o profissional de enfermagem sobre elementos-chave e inter-relacionados, como a conceção prévia da natureza da transição e das suas condições, que servirão para o planeamento de modalidades de intervenção congruentes com as experiências da pessoa e a sua avaliação no decurso do processo saúde-doença. Conclusão: O paradigma oferecido por Meleis pode ser considerado uma abordagem chave para empreender o processo de cuidado de enfermagem que visa apoiar as pessoas com doenças crônicas no alcance do autogerenciamento.

Experiences and challenges of people living with multiple long-term conditions in managing their care in primary care settings in Kerala, India: A qualitative study.

BACKGROUND: Multimorbidity or multiple long-term conditions (MLTCs), the coexistence of two or more chronic conditions within an individual, presents a growing concern for healthcare systems and individuals' well-being. However, we know little about the experiences of those living with MLTCs in low- and middle-income countries (LMICs) such as India. We explore how people living with MLTCs describe their illness, their engagements with healthcare services, and challenges they face within primary care settings in Kerala, India. METHODS: We designed a qualitative descriptive study and conducted in-depth, semi-structured interviews with 31 people (16 males and 15 females) from family health centres (FHCs) in Kerala. Interview data were recorded, transcribed, and thematic analysis using the Framework Method was undertaken. FINDINGS: Two main themes and three sub-themes each were identified; (1) Illness impacts on life (a)physical issues (b) psychological difficulties (c) challenges of self-management and (2) Care-coordination maze (a)fragmentation and poor continuity of care (b) medication management; an uphill battle and (c) primary care falling short. All participants reported physical and psychological challenges associated with their MLTCs. Younger participants reported difficulties in their professional lives, while older participants found household activities challenging. Emotional struggles encompassed feelings of hopelessness and fear rooted in concerns about chronic illness and physical limitations. Older participants, adhering to Kerala's familial support norms, often found themselves emotionally distressed by the notion of burdening their children. Challenges in self-management, such as dietary restrictions, medication adherence, and physical activity engagement, were common. The study highlighted difficulties in coordinating care, primarily related to traveling to multiple healthcare facilities, and patients' perceptions of FHCs as fit for diabetes and hypertension management rather than their multiple conditions. Additionally, participants struggled to manage the task of remembering and consistently taking multiple medications, which was compounded by confusion and memory-related issues. CONCLUSION: This study offers an in-depth view of the experiences of individuals living with MLTCs from Kerala, India. It emphasizes the need for tailored and patient-centred approaches that enhance continuity and coordination of care to manage complex MLTCs in India and similar LMICs.

Burden in family caregivers: The psychometric properties of Polish version of the Zarit Burden Interview. / Poczucie obciazenia opieka wsród opiekunów rodzinnych: psychometryczne wlasciwosci polskiej wersji Zarit Burden Interview.

OBJECTIVES: The aim of the study was to estimate the reliability, validity and internal structure of the Polish version of the Zarit Burden Interview scale (ZBI). METHODS: The participants in the study were 504 Polish family caregivers (spouses, parents, children and other family members) of chronically ill patients. The Burnout Scale version for caregivers (SWS) and the Resilience Assessment Questionnaire (KOP-26) were used. RESULTS: The Polish version of the Zarit Burden Interview demonstrated good psychometric properties. Confirmative factor analysis confirmed the presence of a three-factor second-order structure, the model proved to be quite well suited to the data (CFI = 0.941; TLI = 0.931; SRMR = 0.045; RMSEA = 0.061). Also, the results of the theoretical validity analysis proved to be satisfactory. Cronbach's α coefficient for the general result was 0.91; for individual subscales: "Negative image of the patient" - 0.85, "Frustration" - 0.82 and "Losses" - 0.85. CONCLUSIONS: The Polish version of the ZBI scale can be used as a reliable and accurate diagnostic tool to measure the burden among carers of chronically ill people. Qualitative analysis of the response content also allows to identify areas requiring the implementation of activities in the field of psychological support for the surveyed caregivers.

Role adoption, anxiety, depression and loneliness in family caregivers of patients with chronic diseases.

OBJECTIVE: to describe and explore the relationship of loneliness, anxiety and depression with adoption of the caregiver role among individuals caring for people with chronic diseases in Colombia. METHODS: this was an exploratory and cross-sectional study involving 960 primary caregivers of individuals with chronic diseases. We applied the Caregiver Role Adoption Scale, the University of California at Los Angeles Loneliness Scale, and the Anxiety and Depression Scale. Principal component and multiple correspondence analyses were performed for clustering. RESULTS: among the participating caregivers, 40.8% reported experiencing depression, 59% reported anxiety, 54.6% reported moderate to severe loneliness, and 88.6% reported satisfactory adoption of the caregiver role. Caregivers who presented basic or insufficient role adoption levels tended to have higher scores for anxiety, depression and loneliness. CONCLUSION: adoption of the caregiver role is a mediator in the anxiety, depression and loneliness levels among caregivers. Strategies aimed at supporting caregivers should include training for the caregiver role to mitigate the negative impacts of anxiety, depression and loneliness. (1) More than half of the caregivers reported moderate or severe anxiety and loneliness. (2) Caregivers with low role adoption levels presented more anxiety, depression and loneliness. (3) Satisfactory adoption of the caregiver role reduces anxiety, depression and loneliness. (4) Role adoption should be intervened to reduce the impact on caregivers' mental health.

Sequential organization and interactional functions of patient loyalty in routine chronic encounters.

Doctor-patient communication is pivotal for the delivery of effective health care, patient satisfaction and retention, and the development of patient loyalty to the provider. However, the interactional dynamics of loyalty in real-life communication are left underexplored. In this regard, this study aims to examine and analyze loyalty in naturally occurring routine chronic encounters. Based on audio-recordings collected in a state-run tier-three hospital in China, the study uses conversation analysis to examine the sequential placement of loyalty display and its interactional functions in different environments. The findings report two sequential environments where loyalty display emerges: the opening and closing phases. The findings also show that loyalty is mainly produced by the patient to display affiliation and commitment, indicate their preferred treatment options, and rekindle a disconnected relationship. This work contributes to a more nuanced understanding of loyalty display in service and institutional encounters.