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BACKGROUND: While theoretical models have established the bidirectional relationship between health and wellbeing of parents and children with chronic health conditions (CHCs), previous work has predominantly emphasised the impact of parent functioning on child outcomes. This study examines how quality of life (QoL) domains in children with CHCs are associated with unmet supportive care needs (SCN) of their parents and explores whether these associations vary by health condition. METHOD: Parents of children with congenital heart disease (CHD), type 1 diabetes (T1D) and cancer diagnosed before the age of 12 years and receiving treatment within the last 5 years were eligible. Parents recruited through charity organisations and social media platforms completed a secure, online survey via Qualtrics. The PedsQL examined child QoL across four dimensions: physical, emotional, social and school functioning. A 34-item survey assessed parents' unmet SCN in the previous month across six need domains (e.g., care and informational). Linear regressions examined associations between child QoL and unmet SCN domains and moderation analyses determined whether associations varied as a function of CHC. RESULTS: The study included 186 parents (age range 25-56 years) of children diagnosed with various CHCs (52% CHD; 27% T1D, 21% cancer). The child's emotional functioning was inversely related to all unmet SCN domains, social functioning was inversely related to three domains (physical and social; support; financial), school functioning was inversely related to two domains (physical and social; care), and child's physical functioning was not associated with any SCN domains. Only the association between child school functioning and unmet care needs was significantly moderated by CHC type (p < 0.05). CONCLUSION: Poorer emotional functioning in children with a CHC is a key factor in determining parents unmet SCN. Larger studies are required to replicate these findings and inform design of interventions addressing QoL and unmet SCN in families of children with common CHCs.
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Padres , Calidad de Vida , Apoyo Social , Humanos , Masculino , Femenino , Enfermedad Crónica/psicología , Niño , Adulto , Padres/psicología , Persona de Mediana Edad , Preescolar , Diabetes Mellitus Tipo 1/psicología , Diabetes Mellitus Tipo 1/terapia , Necesidades y Demandas de Servicios de Salud , Neoplasias/psicología , Neoplasias/terapia , Cardiopatías Congénitas/psicología , Cardiopatías Congénitas/terapia , Evaluación de Necesidades , Encuestas y CuestionariosRESUMEN
Background: Self-efficacy and health literacy are closely related to the quality of life in patients with chronic diseases; however, it remains unclear whether their combined effects on the quality of life (QoL) in these patients operate through mediation, interaction, or a combination of both. Methods: The research occurred in China between July 10 and September 15, 2021. A multi-stage random sampling technique was utilized to gather information on self-efficacy, health literacy, and QoL among individuals with chronic diseases. Linear regression models investigated the relationships between these patients' self-efficacy, health literacy, and QoL. Additionally, the four-way decomposition method was used to decompose the overall effects of self-efficacy and health literacy on the QoL in patients with chronic diseases. Results: Significant correlations were found between self-efficacy, health literacy, and QoL among individuals with chronic diseases (all p < 0.05). In the four-way decomposition results, the results of the European Quality of Life Five Dimension Five Level (EQ-5D-5L) displayed the interaction effects mediated by self-efficacy, and the reference interaction effects were not significant, with small effect sizes observed. The influence of health literacy levels on the QoL in these patients was primarily attributed to the controlled direct effect (CDE), accounting for approximately 86.12% [excess relative risk = 0.00415; 95% CI: 0.00326, 0.00504; p < 0.0001]. The proportion solely attributable to the pure indirect effect (PIE) of self-efficacy was 14.5% [excess relative risk = 0.0007; 95% CI: 0.00031, 0.00109; p < 0.0001]. In the EQ visual analog scale (EQ-VAS) results, the proportion of the controlled direct effect was 84.9% [excess relative risk = 0.62443; 95% CI: 0.52269, 0.72618; p < 0.0001], while the proportion solely attributable to the pure indirect effect of mediation was 14.8% [excess relative risk = 0.10876; 95% CI: 0.06409, 0.15344; p < 0.0001]. Conclusion: Self-efficacy and health literacy primarily influence QoL in patients with chronic diseases through controlled and pure indirect effects. Enhancing patients' health literacy and self-efficacy can contribute to improving their QoL.
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Alfabetización en Salud , Calidad de Vida , Autoeficacia , Humanos , Calidad de Vida/psicología , Alfabetización en Salud/estadística & datos numéricos , China , Enfermedad Crónica/psicología , Femenino , Masculino , Estudios Transversales , Persona de Mediana Edad , Adulto , Anciano , Encuestas y CuestionariosRESUMEN
BACKGROUND: This study aimed to investigate the changes in the health behaviors and subjective health perception of adolescents with chronic allergic disease, including atopic dermatitis, asthma, and allergic rhinitis, amidst the coronavirus disease 2019 (COVID-19) pandemic in South Korea. METHODS: This study used the 15th (2019) and 17th (2021) raw data obtained from the Korea Youth Risk Behavior Web-based Survey (KYRBWS), conducted by the Ministry of Health and Welfare of South Korea. Data were analyzed using multiple logistic regression with complex sampling using weighted values. Odds ratios with 95% confidence intervals for six health behaviors and subjective health perception were used as the major variables. RESULTS: Six health behaviors (dietary habits, weight gain, smoking, alcohol consumption, sleep time, and physical activity) changed substantially during COVID-19. There was an increase in the duration of sedentary activities, a slight increase in BMI, and improvements in mental health. Concurrently, there was a decrease in alcohol consumption, sleep duration, and the consumption of sweetened beverages. Despite these improvements in big six health behaviors, adolescents with chronic illnesses continue to perceive themselves as unhealthy. CONCLUSIONS: These findings suggest that the follow-up and monitoring of health behaviors and subjective health perception in adolescents with chronic allergic diseases during the COVID-19 pandemic are necessary. Understanding the mechanisms underlying sustained behavioral change can inform the development of interventions to promote healthy behavior after the pandemic has passed.
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COVID-19 , Conductas Relacionadas con la Salud , Humanos , COVID-19/psicología , COVID-19/epidemiología , Adolescente , República de Corea/epidemiología , Masculino , Femenino , Enfermedad Crónica/psicología , Enfermedad Crónica/epidemiología , Encuestas Epidemiológicas , Hipersensibilidad/epidemiología , Hipersensibilidad/psicología , Dermatitis Atópica/psicología , Dermatitis Atópica/epidemiología , SARS-CoV-2RESUMEN
Background: Identifying the hidden and pervasive phenomenon of burnout among family caregivers of older adults with chronic disease requires the use of a valid and reliable tool tailored to the cultural structure of the target community. Therefore, the present study aimed to design and psychometrically evaluate the family caregivers burnout inventory (FCBI) of older adults with chronic disease. Methods: This research is a sequential exploratory mixed-methods study focused on instrument design, conducted in Iran in 2024. The study employed classical theory, involving three stages to create a valid instrument: item design using inductive (semi-structured face-to-face interviews with 13 caregivers) and deductive (literature review) methods, tool design, and tool evaluation using face validity, content validity, construct validity [exploratory factor analysis (EFA) (N = 297) and confirmatory factor analysis (297 participants)], convergent validity, and reliability (internal consistency and stability). Data were analyzed using AMOS version 24 and SPSS version 26. Results: Based on qualitative findings, participant quotes, and item adoption from other studies, a pool of 228 items was designed using a 5-point Likert scale (always to never). After several stages of review by the research team, 102 items remained. Following face validity (2 items), content validity (46 items), and construct validity (23 items due to factor loadings less than 0.4 and cross-loadings), 71 items were eliminated, leaving 31 items. EFA results indicated that the family caregiver's burnout construct of older adults with chronic diseases comprises six factors include; "neurosis," "feeling victimized," "extreme fatigue and helplessness," "neglect or abuse of self and others," "adaptation deficiency" and "emotional separation" explaining 52.93% of the total variance. The fit indices showed acceptable model fit with the data. In this study, composite reliability and average variance extracted (AVE) for the six factors were greater than 0.7 and 0.5, respectively, and the (AVE) for each factor was higher than the composite reliability. Cronbach's alpha coefficient for the entire scale was 0.975, and there was a significant correlation between test and retest scores (p < 0.001). Conclusion: FCBI demonstrates suitable validity and reliability and can be used in various settings by health service providers to identify symptoms of burnout in family caregivers.
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Cuidadores , Psicometría , Humanos , Cuidadores/psicología , Enfermedad Crónica/psicología , Masculino , Femenino , Irán , Persona de Mediana Edad , Reproducibilidad de los Resultados , Anciano , Encuestas y Cuestionarios , Agotamiento Psicológico/psicología , Adulto , Análisis FactorialRESUMEN
BACKGROUND: This study aimed to systematically evaluate interventions and effects that promote involvement in medication safety among older people with chronic diseases and to provide new ideas and references for developing standardized and effective intervention strategies to improve patient involvement in medication safety. METHODS: A comprehensive literature search across twelve databases was conducted using both computerized and manual methods. The search was limited to studies designated as randomized controlled trials or quasi-experimental studies and was conducted from the time of each database's inception until September 2023. Two researchers independently carried out qualitative analyses, which included screening the literature, extracting the data, and assessing the quality of the selected studies. RESULTS: This study included five studies involving a total of 388 participants, with interventions aimed at enhancing patient involvement in medication safety, including interactive health education, motivational interviewing, and medication reconciliation. However, direct evidence confirming the positive impact of these interventions in promoting medication safety behaviors among older people with chronic diseases is still lacking. CONCLUSIONS: Patient involvement in medication safety behaviors is essential for promoting healthy aging. Medication education, motivational interviewing, and medication reconciliation may improve the willingness and ability of older people to participate. However, limitations in the methodological quality of current studies prevent drawing definitive conclusions, highlighting the urgent need for more high-quality research. TRIAL REGISTRATION: PROSPERO number CRD42023494924.
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Participación del Paciente , Humanos , Enfermedad Crónica/psicología , Anciano , Participación del Paciente/métodos , Conciliación de Medicamentos/métodos , Entrevista Motivacional/métodos , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos/prevención & control , Seguridad del Paciente , Educación del Paciente como Asunto/métodosRESUMEN
The significance of health literacy for elderly individuals with chronic illnesses lies in managing and delaying disease development, which is affected by personal and environmental factors. Family communication can provide an emotional support environment; self-efficacy is an important factor of subjective initiative and personality. A relatively persistent thinking and behavior pattern can affect the environment, subjective initiative, and individual health outcomes. This study aims to explore the effects of the Big Five personality traits on the health literacy of elderly individuals with chronic illnesses and to hypothesize that family communication and self-efficacy mediate the Big Five personalities and health literacy. A cross-sectional study of 2251 elderly individuals with chronic diseases was conducted through nationwide random quota sampling. The structural equation model was used to explore the mediating role of family communication and self-efficacy between the Big Five personality and health literacy. Family communication played a simple mediating role in the influence of extraversion, agreeableness, conscientiousness, and neuroticism on health literacy. Self-efficacy played a simple mediating role in the influence of the Big Five personalities on health literacy. Self-efficacy and family communication played a chain mediating role between extraversion, agreeableness, conscientiousness, neuroticism, and health literacy. Nurses can enhance the health literacy of elderly individuals with chronic illnesses with extraversion, agreeableness, conscientiousness, and neuroticism through family communication and self-efficacy while promoting the health literacy of those with openness through self-efficacy.
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Comunicación , Alfabetización en Salud , Personalidad , Autoeficacia , Humanos , Anciano , Masculino , Femenino , Enfermedad Crónica/psicología , Estudios Transversales , Anciano de 80 o más Años , Persona de Mediana EdadRESUMEN
BACKGROUND: Health-related stigma and its internalization among individuals with chronic health conditions contribute to impaired mental and physical health and quality of life. Research on health-related stigma has been siloed, with disease-specific measures that may not capture the experiences of individuals with multiple health conditions and that prevent comparisons across health conditions. The current study aimed to develop and test a transdiagnostic measure of internalized health-related stigma for use among adults with different physical health conditions. METHODS: An existing measure of internalized mental health stigma was adapted to assess stigma due to chronic physical health conditions following COSMIN procedures, with input from advisory boards of community members living with a range of stigmatized health conditions (obesity, type 1 and type 2 diabetes, skin diseases, HIV, chronic pain, and cancers) and of health professionals who specialized in these conditions. The new Internalized Health-Related Stigma (I-HEARTS) Scale was tested in an online sample of 300 adults with these health conditions, recruited from ResearchMatch. Additional psychosocial measures of mental health and quality of life were administered, and participants provided information about their health conditions and demographic characteristics. Exploratory factor analysis and tests of reliability and validity were conducted to determine the psychometric properties of the I-HEARTS Scale, and k-means clustering and receiver of characteristic curve analysis were used to determine a clinically meaningful cutoff score indicating high levels of internalized stigma. RESULTS: Factor analysis results yielded a 25-item scale with a 3-factor solution, with subscales of Perceived and Anticipated Stigma, Stereotype Application and Self-Devaluation, and Stigma Resistance. Psychometric properties for internal consistency, inter-item and item-total correlations, and test-retest reliability were strong. Certain demographics (e.g., younger age) and characteristics related to health conditions (e.g., greater symptom severity) were associated with higher levels of internalized stigma. I-HEARTS Scale scores correlated moderately to strongly with related but distinct psychosocial measures, and a cutoff score of 3.40 or higher on the 1-7 rating scale was determined to indicate clinically meaningful levels of internalized stigma. CONCLUSIONS: The I-HEARTS Scale is a reliable and valid measure for the assessment of internalized health-related stigma among adults with varied stigmatized chronic health conditions. STUDY PRE-REGISTRATION: https://osf.io/84c5d/?view_only=87238512f6d6475c87f8f64280a8a15f .
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Estigma Social , Humanos , Masculino , Femenino , Adulto , Persona de Mediana Edad , Calidad de Vida/psicología , Anciano , Psicometría/métodos , Encuestas y Cuestionarios , Enfermedad Crónica/psicología , Adulto Joven , Reproducibilidad de los ResultadosRESUMEN
INTRODUCTION: There is a pressing need to understand and explore the complex experiences and psychosocial support needs of people LWBC-CM and their informal caregivers, to inform survivorship and supportive care interventions. METHODS: In-depth qualitative interviews were conducted with people LWBC-CM and their informal caregivers in Scotland, invited via primary care. One-to-one, face-to-face interviews were conducted with informed consent exploring experiences of symptoms, psychosocial support needs and interactions with health services. Interviews were transcribed and analysed using a thematic approach. RESULTS: Forty-one people LWBC-CM and twenty-three informal caregivers were interviewed. Four themes were identified: the Physical and Psychological Impact of Cancer and Comorbidity, Dominant Storie-Prioritising Conditions and Making Sense of Illness, Navigating Health Services and Treatments and Caring for People with Complex Health Conditions. Type and severity of conditions mediated people's experiences and daily living. Complex fatigue-fatigue arising from a number of health conditions-dominated symptomology. Participants navigated multiple appointments and complex medication regimes. Patients identified the need for acknowledgement of other chronic conditions and for streamlined care provision. Mutual caring and social isolation were also identified as part of the caring relationship. CONCLUSIONS: There is a mandate to address the psychosocial support needs of people LWBC-CM, and their informal carers, given the burden of treatment for cancer survivors with moderate to severe complex conditions as they navigate health services. PATIENT OR PUBLIC CONTRIBUTION: A patient representative has been involved in all stages of the study from development of the application through study design, commenting on documentation, analysis of transcripts and writing the manuscript. They are included as an author on the manuscript.
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Cuidadores , Comorbilidad , Entrevistas como Asunto , Neoplasias , Investigación Cualitativa , Humanos , Femenino , Masculino , Neoplasias/psicología , Neoplasias/terapia , Persona de Mediana Edad , Cuidadores/psicología , Escocia , Anciano , Adulto , Apoyo Social , Anciano de 80 o más Años , Supervivientes de Cáncer/psicología , Sistemas de Apoyo Psicosocial , Enfermedad Crónica/psicologíaRESUMEN
Background and Objectives: Health-seeking behavior is a critical determinant of health outcomes, particularly in countries like Indonesia. Given the increasing burden of noncommunicable diseases, understanding the factors that influence health-seeking behavior in this context is essential for developing more accessible and effective public health strategies. This study aimed to identify various factors associated with health-seeking behavior among patients with chronic diseases across Indonesia, especially in formal facilities. Materials and Methods: This study used a cross-sectional research design, utilizing Indonesian Family Life Survey (IFLS)-5 data. The inclusion criteria included respondents aged 20-74 years old with at least one chronic disease based on self-reported data. Respondents who did not receive treatment, practiced self-medication, or provided incomplete data were excluded. We used multivariate logistic regression to identify factors associated with health-seeking behavior in formal facilities. Results: The results revealed that 80.7% (n = 1993) of the 2471 respondents sought treatment in formal facilities, whereas 19.3% (n = 478) opted for informal facilities. Respondents who were Bugis (OR 9.187, 95% CI 2.182-38.683; p = 0.002), retired (OR 2.966, 95% CI 1.233-7.135; p = 0.015), did not smoke (OR 1.604, 95% CI 1.126-2.285; p = 0.009), made less than IDR 1,500,000 a month (OR 1.466, 95% CI 1.174-1.831; p = 0.000), had to travel more than 3 km to reach a treatment facility (OR 1.847, 95% CI 1.41-2.42; p = 0.000), or had more than one comorbidity (OR 1.396, 95% CI; p = 0.01) were more likely to seek treatment at formal facilities. Conclusions: These findings are expected to provide recommendations for policymakers, healthcare providers, and researchers to contribute to the development of targeted interventions that can improve healthcare access and utilization, ultimately enhancing health outcomes and equity in Indonesia.
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Aceptación de la Atención de Salud , Humanos , Indonesia , Persona de Mediana Edad , Masculino , Femenino , Adulto , Estudios Transversales , Anciano , Aceptación de la Atención de Salud/estadística & datos numéricos , Aceptación de la Atención de Salud/psicología , Encuestas y Cuestionarios , Enfermedad Crónica/psicología , Modelos Logísticos , Adulto Joven , Conductas Relacionadas con la SaludRESUMEN
BACKGROUND: Few studies have longitudinally assessed the determinants of depressive symptoms among persons 80 years and older. The aim of this study was to estimate the determinants of depressive symptoms among persons 80 years and older based on 4-wave national longitudinal data from Thailand. METHODS: Data from the Health, Aging, and Retirement in Thailand study from 2015, 2017, 2020 and 2022 were utilized. The sample was restricted to community-dwelling persons 80 years and older (analytic sample: n = 2763 observations). For the pooled sample, average age was 85.0 years (range 80-117 years). Established measurements were used to assess depressive symptoms. Linear fixed effects regression was applied to assess the time-variant determinants and outcomes. RESULTS: Regressions found that higher functional disability and an increase in the number of chronic conditions worsened depressive symptoms. More favourable self-rated physical health, and higher exercise frequency improved depressive symptoms. In addition, among women higher subjective economic status decreased depressive symptoms. CONCLUSIONS: This longitudinal study enhances our understanding of the determinants of depressive symptoms among persons 80 years and older. Strategies to delay or decrease functional disability, chronic conditions, increase physical activity, and improve subjective economic status may help in reducing depressive symptoms.
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Depresión , Humanos , Tailandia/epidemiología , Femenino , Masculino , Estudios Longitudinales , Anciano de 80 o más Años , Depresión/epidemiología , Depresión/psicología , Vida Independiente/tendencias , Vida Independiente/psicología , Jubilación/psicología , Jubilación/tendencias , Enfermedad Crónica/epidemiología , Enfermedad Crónica/psicología , Estado de Salud , Envejecimiento/psicología , Envejecimiento/fisiologíaRESUMEN
OBJECTIVE: As the ageing process in China further accelerates and the average life expectancy increases, chronic disease prevalence and multimorbidity rates are constantly rising, especially among elderly individuals. However, few previous studies have explored the impacts of chronic diseases and multimorbidity on health-related quality of life (HRQoL). This study aimed to investigate this association among community-dwelling elderly individuals in China. METHODS: A cross-sectional study was conducted in communities in three cities (Suzhou, Qingdao, and Guangzhou). The basic characteristics, chronic diseases and HRQoL of participants were collected, and HRQoL was measured by the EuroQol 5-Dimensions 3-Level version (EQ-5D-3L). Logistic regression, Tobit regression and generalized linear models were used to assess the impacts of chronic diseases and multimorbidity on HRQoL. RESULTS: Approximately 83.2 percent of the 1,218 respondents had chronic conditions, with 30 percent having multimorbidity. After controlling for sociodemographic and health behaviour factors, patients with stroke were more likely to report problems in all five dimensions of the EQ-5D and had a lower EQ-5D utility index (UI) (b = -0.342) than patients with other chronic conditions. Patients with chronic pulmonary obstruction had a lower EuroQol Visual Analog Scale (EQ-VAS) (b = -11.169) than patients with other chronic conditions. Furthermore, patients with multimorbidity had worse HRQoL (P < 0.001). CONCLUSIONS: Both chronic condition probability and multimorbidity rates were high among Chinese community-dwelling elderly individuals. Different disease types had varying degrees of impact on HRQoL, and patients with multimorbidity had worse HRQoL. This study proposes that the government enhance the quality of life of community-dwelling elderly individuals with multimorbidity by establishing long-term care insurance and expanding comprehensive community-based home health care services.
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Vida Independiente , Multimorbilidad , Calidad de Vida , Humanos , Estudios Transversales , Masculino , Calidad de Vida/psicología , Anciano , Femenino , China/epidemiología , Enfermedad Crónica/epidemiología , Enfermedad Crónica/psicología , Anciano de 80 o más Años , Encuestas y Cuestionarios , Persona de Mediana Edad , Población Urbana/estadística & datos numéricosRESUMEN
OBJECTIVE: to conduct the cross-cultural adaptation and psychometric validation of the Family Integration Experience Scale: Chronic Illness in Brazilian Portuguese. METHOD: a methodological study divided into two stages. In the first stage, the Family Integration Experience Scale: Chronic Illness was cross-culturally adapted for Brazilian culture, when the scale was subjected to translations, back-translations, and a committee of judges - to verify the semantic, linguistic, and contextual equivalence between the original and translated items. The second step was to validate the scale in a sample of families of children and adolescents with chronic illnesses. The participants were 230 families of children with chronic illnesses attending the outpatient clinic of a tertiary public hospital with teaching and research characteristics. RESULTS: internal consistency was tested using Cronbach's alpha (0.81) and McDonald's omega (0.81). Confirmatory factor analysis was also tested, and the model's fit was acceptable for validation standards. CONCLUSION: the version of the Family Integration Experience Scale: Chronic Illness showed evidence of validation and can be considered a valid and reliable instrument in Brazilian culture. The Brazilian Portuguese version of the Family Integration Experience Scale: Chronic Illness can be used to measure the experience of family integration in chronic illness.
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Características Culturales , Lenguaje , Humanos , Enfermedad Crónica/psicología , Brasil , Femenino , Masculino , Encuestas y Cuestionarios/normas , Adolescente , Traducciones , Niño , Adulto , Familia/psicología , Psicometría/normasRESUMEN
Background Patient Assessment of Care in Chronic Conditions (PACIC+), included in some Australian guidelines, has been shown reliable for measuring patient engagement and perception of their care in primary care settings. Various studies have focussed on PACIC+ use in specific conditions. This study aims to expand PACIC+ to measure patient empowerment to self-manage their chronic condition and validate it in the broader Australian primary care population. This study aims to evaluate internal consistency and reliability of PACIC+ and six new supplementary items proposed to assess patient wellbeing and empowerment to self-manage their chronic condition. Methods A repeated-measures correlation design study assessed the expanded PACIC+ over three time-points. Particpants were patients with at least one chronic disease, referred by consultant physician, or recruited by advertisement posters in hospital clinic areas. Results PACIC+ (26-item) had acceptable internal consitency (Cronbach's alpha 0.96). Test-retest reliability (Time-1 and 2, P r (48)=0.43; and New supplementary items: Confidence r (48)=0.54; Understanding r (48)=0.62; Support r (48)=0.43; Overall Health r (48)=0.42; Overall Health Change r (48)=-0.31, P =0.03; and Acute Episodes of Care in 1-month r (48)=0.42, P Conclusions The expanded PACIC+ is an improved psychometric tool providing for the patient's voice in a shared health journey. It is a valid, reliable tool to monitor and measure self-management of chronic conditions in Australian population clinic and primary healthcare settings.
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Atención Primaria de Salud , Automanejo , Humanos , Enfermedad Crónica/terapia , Enfermedad Crónica/psicología , Femenino , Masculino , Automanejo/métodos , Australia , Persona de Mediana Edad , Reproducibilidad de los Resultados , Anciano , Adulto , Encuestas y Cuestionarios , Psicometría/métodos , Participación del Paciente/métodosRESUMEN
Importance: Rohingya refugees, forcibly displaced from Myanmar, face challenges adapting to Bangladesh. Examining their quality of life (QOL) is vital to identifying nuanced factors associated with their well-being, informing targeted interventions for an improved QOL. Objectives: To identify the QOL among Rohingya refugees 5 years after migration to Bangladesh, with a particular emphasis on understanding the complex interplay between sociodemographic factors and chronic illnesses. Design, Setting, and Participants: A cross-sectional study involving resettled Rohingya adults was conducted between May 18 and July 7, 2021, approximately 5 years after their resettlement in Bangladesh. Of the participants, 500 individuals were healthy, whereas 558 individuals were undergoing treatment for at least 1 chronic disease. Data were analyzed from January to February 2024. Main Outcomes and Measures: The study assessed QOL using the short version of the World Health Organization's QOL Questionnaire, covering 4 domains: physical, psychological, social, and environmental. Scores were transformed to a maximum of 100. Tobit linear regression, adjusted for potential confounders, was employed for analysis. Results: The study included a total of 1058 respondents, who were predominantly female (630 participants [59.5%]) and had a mean (SD) age of 42.5 (16.1) years. Despite being healthy, individuals without chronic illnesses had median QOL scores ranging from 44 to 56 out of 100, indicating a relatively poor QOL. A total of 260 participants (46.6%) with chronic diseases reported very poor or poor QOL, in contrast to 58 healthy individuals (11.6%) in the fifth year after displacement. Specifically, patients with cancer and those who had multimorbidity exhibited the lowest QOL scores across all domains, with significant reductions in the physical health (10.57 decrease; 95% CI, -12.97 to -8.17) and psychological domain scores (7.20 decrease; 95% CI, -9.71 to -5.93) according to Tobit regression analysis. Conclusions and Relevance: This study found that chronic illnesses were associated with all domains of QOL among Rohingya refugees, particularly those with musculoskeletal disorders, cancer, and multimorbid conditions. This heightened vulnerability may contribute to poor QOL in this population. By uncovering these disparities, the study lays the groundwork for targeted interventions and policies aligned with the United Nations' goal of leaving no one behind in sustainable development efforts.
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Calidad de Vida , Refugiados , Humanos , Refugiados/psicología , Refugiados/estadística & datos numéricos , Calidad de Vida/psicología , Bangladesh , Femenino , Masculino , Enfermedad Crónica/psicología , Enfermedad Crónica/epidemiología , Estudios Transversales , Adulto , Mianmar/etnología , Persona de Mediana Edad , Encuestas y CuestionariosRESUMEN
INTRODUCTION: This study investigated the effects of falls on self-rated health and anxiety symptoms and the moderating role of psychological resilience in Chinese older persons with chronic multimorbidity. METHODS: Data were taken from the 2018 Chinese Longitudinal Healthy Longevity Survey (CLHLS). We used a linear regression model to evaluate the associations among falls and self-rated health and anxiety symptoms, the moderating role of psychological resilience was verified by moderation analysis, and we also used a replacement model to test robustness. Finally, the results of the study were further verified via heterogeneity analysis through subgroup regression. RESULTS: A total of 2933 people aged 60 years or older with chronic multimorbidity were included in our study. The linear regression results revealed that falls were significantly negatively correlated with the self-rated health symptoms of older Chinese people with chronic multimorbidity (ß = -0.1703, p < 0.01) and significantly positively correlated with anxiety symptoms (ß = 0.5590, p < 0.01). Among the moderating effects, we found that psychological resilience played a moderating role between falls and anxiety symptoms (ß = - 0.151 [-0.217, -0.084], p < 0.01). Finally, we found heterogeneity in the study results by sex, residence and number of chronic diseases. CONCLUSION: Falls are associated with poorer self-rated health and higher anxiety levels among older persons with chronic multimorbidity in China. High levels of psychological resilience have a moderating effect on the development of anxiety symptoms.
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Accidentes por Caídas , Ansiedad , Multimorbilidad , Resiliencia Psicológica , Humanos , Masculino , Femenino , Anciano , China/epidemiología , Ansiedad/psicología , Ansiedad/epidemiología , Persona de Mediana Edad , Anciano de 80 o más Años , Enfermedad Crónica/psicología , Enfermedad Crónica/epidemiología , Estudios Longitudinales , Autoinforme , Estado de Salud , Autoevaluación Diagnóstica , Pueblos del Este de AsiaRESUMEN
OBJECTIVE: Multimorbidity is recognized as a serious health condition faced by a majority of older adults. Research investigating adaptive responses to multimorbidity, termed multimorbidity resilience, has been growing. This paper examines protective and risk factors, with a focus on health behaviours, socio-economic resources, and social support using an established measure of resilience (Connor-Davidson Resilience Scale) among older adults, focusing on older persons with two or more concurrent chronic conditions. METHODS: Using Baseline (2011-2015), Follow-up One (2015-2018), and Follow-up Two (2018-2021) data from the Comprehensive Cohort of the Canadian Longitudinal Study on Aging, we tested hypotheses using 13,064 participants aged 65 years and older, who completed all waves and reported two or more of 27 chronic conditions, for the full sample of multimorbid individuals and three multimorbidity clusters: Cardiovascular/Metabolic, Musculoskeletal, and Mental Health. Associations between protective and risk factors and resilience were examined using linear regression to model the Connor-Davidson resilience scale, adjusting for illness context and social determinants of health. RESULTS: Among all multimorbid individuals, the strongest associations with resilience were found for higher self-rated health, greater sleep satisfaction, better appetite, higher household income, more relatives and friends, being overweight (compared to normal weight), fewer housing problems, and fewer skipped meals. Weaker associations were found for non-smokers, less alcohol consumption, less pain, sedentary behaviour, being non-married (compared to married), and among Canadian born (compared to foreign). The analyses for the three multimorbidity clusters were largely replicated for the three multimorbidity clusters, but with some nuances depending on the cluster. DISCUSSION: This research provides confirmatory evidence for several protective and risk factors affecting the ability to cope and recover from multimorbidity adversity among older adults. There are consistent patterns for the multimorbidity disease clusters, but some distinct relationships arise that are worthy of attention. The implications of the findings for modifiable health behaviours and socio-economic factors are discussed for their public health and clinical relevance.
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Conductas Relacionadas con la Salud , Multimorbilidad , Resiliencia Psicológica , Apoyo Social , Factores Socioeconómicos , Humanos , Anciano , Canadá/epidemiología , Masculino , Femenino , Estudios Longitudinales , Anciano de 80 o más Años , Factores de Riesgo , Enfermedad Crónica/epidemiología , Enfermedad Crónica/psicologíaRESUMEN
BACKGROUND: The study aimed to understand the experience of and identify the motivations for parents participating in health research for their children with medical complexity (CMC). Patient-oriented research strategies are increasingly important in health research to ensure that the voices of patients and parents help shape and direct research programmes. To bring a family-centred and patient-oriented focus to our research and objectives, we asked parents about their experiences when they participated in healthcare research related to their child with CMC. METHODS: A parent partner, who also has a CMC, interviewed 12 parents (11 mothers and 1 father) of children living with medical complexity to understand their motivations to participate in healthcare research for their child. The parent partner conducted and transcribed the interviews and led our data analysis. Interpretive phenomenological analysis (IPA) was used to inform our data coding and analytic process. RESULTS: Parents described numerous reasons for their participation in research about their children. These motivations landed within four main themes: feeling helpless and hopeful, child-centred motivation, being part of something good and forming a relationship with the research team. In addition to these themes, parents highlighted factors that influenced their ability or desire to participate, such as time, capacity and the level of invasiveness for their child. Ultimately, the reflections by parents emphasized their unique lives in caring for their CMC and the need to integrate their lived experiences with the research they engage in. CONCLUSION: This study offers important insights for healthcare teams who want to engage parents of CMC to participate in research. Understanding parents' motivation to participate in research can help researchers create richer engagement and more meaningful experiences for themselves and their participants, thereby bolstering research programmes.
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Motivación , Padres , Investigación Cualitativa , Humanos , Femenino , Masculino , Niño , Padres/psicología , Adulto , Preescolar , Adolescente , Enfermedad Crónica/psicología , Niños con Discapacidad/psicología , Investigación sobre Servicios de Salud , Persona de Mediana EdadRESUMEN
BACKGROUND: The Patient Assessment of Chronic Illness Care (PACIC-5As) questionnaire has been designed to evaluate the healthcare experiences of individuals with chronic diseases such as diabetes. Older adults are at higher risk for diabetes and its associated complications. The aim of this study was transcultural adaptation and evaluation of the validity and reliability of the PACIC-5As questionnaire in older patients with diabetes residing in Qazvin City, Iran. METHOD: In this validation study, we recruited 306 older patients with diabetes from Comprehensive Health Centers in Qazvin, Iran. The multi-stage cluster sampling technique was used to choose a representative sample. The PACIC-5As questionnaire was translated into Persian using the World Health Organization (WHO) standardized method. The validity (face, content, and construct) and reliability (Cronbach's alpha) of the PACIC-5As were assessed. Data analysis was conducted using R software and the Lavaan package. RESULTS: The mean age of the older patients was 69.99 ± 6.94 years old. Most older participants were female (n = 180, 58.82%) and married (n = 216, 70.59%). Regarding face validity, all items of PACIC-5As had impact scores greater than 1.5. In terms of content validity, all items had a content validity ratio > 0.49 and a content validity index > 0.79. The results of confirmatory factor analysis demonstrated that the model exhibited satisfactory fit across the expected five factors, including assess, advise, agree, assist, and arrange, for the 25 items of the PACIC-5As questionnaire. The Cronbach's alpha coefficient for the PACIC-5As questionnaire was 0.805. CONCLUSION: This study indicates that the Persian version of the PACIC-5As questionnaire is valid and reliable for assessing healthcare experiences in older patients with diabetes. This means that the questionnaire can be effectively used in this population.
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Diabetes Mellitus Tipo 2 , Humanos , Irán , Femenino , Masculino , Anciano , Diabetes Mellitus Tipo 2/terapia , Diabetes Mellitus Tipo 2/psicología , Encuestas y Cuestionarios/normas , Reproducibilidad de los Resultados , Persona de Mediana Edad , Enfermedad Crónica/terapia , Enfermedad Crónica/psicología , Psicometría , Traducciones , Anciano de 80 o más Años , Satisfacción del Paciente/estadística & datos numéricosRESUMEN
BACKGROUND: In Sub-Saharan Africa (SSA), there is a noticeable shift from infectious diseases to chronic non-communicable diseases (CNCDs) based on recent studies. However, other studies suggest that social support can significantly improve self-care, increase knowledge of disease symptoms, and ultimately increase overall well-being in patients with CNCDs. In this study, we investigated the influence of perceived social support on treatment adherence among adults living with CNCDs in the Ho Municipality. METHODS: This was a health facility-based cross-sectional study among 432 adults living with cancer, diabetes, chronic kidney disease (CKD), stroke, and hypertension in the Ho Municipality of the Volta Region, Ghana. We adopted the Multi-dimensional Scale of Perceived Social Support (MSPSS), Medication Adherence Rating Scale and independent items to collect data. Logistic regression models were used to analyze the data with STATA v17.0 at 95% Confidence Intervals with statistical significance set at p<0.05. RESULTS: Majority of the participants (62%) reported high levels of perceived social support. While friends were the main source of support (69.4%), significant others provided the least support (45.4%). Among the dimensions of treatment adherence, participants demonstrated the highest adherence to reviews/check-ups (98.8%), while medication adherence had the highest level of non-adherence (38%). We did not find a significant association between perceived social support and overall treatment adherence, except for individuals with low perceived social support from friends (aOR = 8.58, 95% CI = 4.21,17.52), who were more likely to exhibit high adherence to behavioural and lifestyle recommendations. CONCLUSION: While the majority of respondents reported high perceived social support, there was no significant link between social support and overall treatment adherence. However, individuals with low support from friends showed a notably increased adherence to behavioural and lifestyle recommendations. This underscores the nuanced impact of social support on specific aspects of adherence, highlighting the need for targeted interventions tailored to individual support networks.
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Enfermedades no Transmisibles , Apoyo Social , Humanos , Ghana , Masculino , Femenino , Estudios Transversales , Persona de Mediana Edad , Adulto , Enfermedades no Transmisibles/epidemiología , Enfermedades no Transmisibles/terapia , Enfermedades no Transmisibles/psicología , Enfermedad Crónica/psicología , Anciano , Cumplimiento y Adherencia al Tratamiento/psicología , Cumplimiento y Adherencia al Tratamiento/estadística & datos numéricos , Cumplimiento de la Medicación/psicología , Cumplimiento de la Medicación/estadística & datos numéricos , Instituciones de SaludRESUMEN
BACKGROUND: Empathy is a fundamental element of the physician-patient relationship for treatment and therapeutic adherence that has had to face significant changes due to the migrations of the health system in Chile. AIM: Characterize the empathetic physicians according to the perceptions of chronic patients during the encounter with national and foreign doctors in the public health system in the Maule Region. METHODS: Qualitative study of exploratory-descriptive type. Twenty chronic patients from public health services in the Maule region were interviewed remotely using the free listing technique. A thematic processual qualitative analysis of the content and a descriptive quantitative analysis were carried out where the frequency and salience of the Smith index assisted by the Anthropac 4.98 software were obtained. RESULTS: Seven categories of empathetic care were identified in the physicians-patient relationship: Affectivity (37%), Communication (19%), Attention (13%), Respect (12%), Research (9%), Knowledge (5%) and Efficiency (5%). CONCLUSIONS: The affective and psychoemotional aspects were more valued than the cognitive aspects of empathetic care. No differences were observed in assessing the empathetic care of patients seen by Chilean physicians and those treated by foreign physicians.