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1.
Enferm. actual Costa Rica (Online) ; (46): 58603, Jan.-Jun. 2024. graf
Article Es | LILACS, BDENF, SaludCR | ID: biblio-1550247

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.


Humans , Chronic Disease/psychology , Transitional Care , Self-Management/methods
2.
BMC Health Serv Res ; 24(1): 571, 2024 May 02.
Article En | MEDLINE | ID: mdl-38698451

BACKGROUND: The growing number of older adults with chronic diseases challenges already strained healthcare systems. Fragmented systems make transitions between healthcare settings demanding, posing risks during transitions from in-patient care to home. Despite efforts to make healthcare person-centered during care transitions, previous research indicates that these ambitions are not yet achieved. Therefore, there is a need to examine whether recent initiatives have positively influenced older adults' experiences of transitions from in-patient care to home. This study aimed to describe older adults' experiences of being discharged from in-patient care to home. METHODS: This study had a qualitative descriptive design. Individual interviews were conducted in January-June 2022 with 17 older Swedish adults with chronic diseases and needing coordinated care transitions from in-patient care to home. Data were analyzed using inductive qualitative content analysis. RESULTS: The findings indicate that despite being the supposed main character, the older adult is not always involved in the planning and decision-making of their own care transition, often having poor insight and involvement in, and impact on, these aspects. This leads to an experience of mismatch between actual needs and the expectations of planned support after discharge. CONCLUSIONS: The study reveals a notable disparity between the assumed central role of older adults in care transitions and their insight and involvement in planning and decision-making.


Patient Discharge , Qualitative Research , Humans , Aged , Male , Female , Sweden , Aged, 80 and over , Home Care Services , Chronic Disease/therapy , Chronic Disease/psychology , Interviews as Topic , Continuity of Patient Care
3.
JMIR Mhealth Uhealth ; 12: e49024, 2024 May 01.
Article En | MEDLINE | ID: mdl-38717433

Background: Mobile health (mHealth) interventions have immense potential to support disease self-management for people with complex medical conditions following treatment regimens that involve taking medicine and other self-management activities. However, there is no consensus on what discrete behavior change techniques (BCTs) should be used in an effective adherence and self-management-promoting mHealth solution for any chronic illness. Reviewing the extant literature to identify effective, cross-cutting BCTs in mHealth interventions for adherence and self-management promotion could help accelerate the development, evaluation, and dissemination of behavior change interventions with potential generalizability across complex medical conditions. Objective: This study aimed to identify cross-cutting, mHealth-based BCTs to incorporate into effective mHealth adherence and self-management interventions for people with complex medical conditions, by systematically reviewing the literature across chronic medical conditions with similar adherence and self-management demands. Methods: A registered systematic review was conducted to identify published evaluations of mHealth adherence and self-management interventions for chronic medical conditions with complex adherence and self-management demands. The methodological characteristics and BCTs in each study were extracted using a standard data collection form. Results: A total of 122 studies were reviewed; the majority involved people with type 2 diabetes (28/122, 23%), asthma (27/122, 22%), and type 1 diabetes (19/122, 16%). mHealth interventions rated as having a positive outcome on adherence and self-management used more BCTs (mean 4.95, SD 2.56) than interventions with no impact on outcomes (mean 3.57, SD 1.95) or those that used >1 outcome measure or analytic approach (mean 3.90, SD 1.93; P=.02). The following BCTs were associated with positive outcomes: self-monitoring outcomes of behavior (39/59, 66%), feedback on outcomes of behavior (34/59, 58%), self-monitoring of behavior (34/59, 58%), feedback on behavior (29/59, 49%), credible source (24/59, 41%), and goal setting (behavior; 14/59, 24%). In adult-only samples, prompts and cues were associated with positive outcomes (34/45, 76%). In adolescent and young adult samples, information about health consequences (1/4, 25%), problem-solving (1/4, 25%), and material reward (behavior; 2/4, 50%) were associated with positive outcomes. In interventions explicitly targeting medicine taking, prompts and cues (25/33, 76%) and credible source (13/33, 39%) were associated with positive outcomes. In interventions focused on self-management and other adherence targets, instruction on how to perform the behavior (8/26, 31%), goal setting (behavior; 8/26, 31%), and action planning (5/26, 19%) were associated with positive outcomes. Conclusions: To support adherence and self-management in people with complex medical conditions, mHealth tools should purposefully incorporate effective and developmentally appropriate BCTs. A cross-cutting approach to BCT selection could accelerate the development of much-needed mHealth interventions for target populations, although mHealth intervention developers should continue to consider the unique needs of the target population when designing these tools.


Behavior Therapy , Self-Management , Telemedicine , Treatment Adherence and Compliance , Humans , Self-Management/methods , Self-Management/psychology , Self-Management/statistics & numerical data , Telemedicine/methods , Telemedicine/statistics & numerical data , Telemedicine/standards , Treatment Adherence and Compliance/statistics & numerical data , Treatment Adherence and Compliance/psychology , Behavior Therapy/methods , Behavior Therapy/instrumentation , Behavior Therapy/statistics & numerical data , Behavior Therapy/standards , Chronic Disease/therapy , Chronic Disease/psychology
5.
BMJ Open ; 14(5): e083088, 2024 May 22.
Article En | MEDLINE | ID: mdl-38777589

OBJECTIVES: Caregiver burden often goes unrecognised and can substantially affect caregivers' physical, psychological and financial well-being, thereby impacting quality of care. This study investigates burden among caregivers of children with chronic medical conditions in a tertiary care hospital in Pakistan. The study aims to assess the extent of burden, explore influencing factors and recommendations for interventions. DESIGN: Mixed-methods study, comprising of an in-person paper-based survey, employing the Zarit Burden Interview scale to assess burden scores. Qualitative component included thematic analysis of semi-structured in-depth interviews with caregivers. PARTICIPANTS: 383 caregivers of children admitted to the inpatient paediatric services at our tertiary care centre were surveyed. In-depth interviews were conducted with 19 caregivers. RESULTS: The survey revealed a mean burden score of 35.35±15.14, with nearly half of the participants (46%, n=177) experiencing mild burden, while 37% (n=140) reporting moderate-to-severe burden. The most common diagnosis was cancer (24%, n=92), while the highest burden (42.97±15.47) was noted for congenital cardiac disease. Greater burden was significantly associated with lower caregiver education, young age of the child at diagnosis and increased number of hospital visits (p<0.05). Caregivers highlighted financial strain, psychosocial effects and impact on lifestyle and relationships as key challenges. They emphasised the need for improved medical coordination, financial support and enhanced hospital services. CONCLUSIONS: The study elucidates the multifaceted nature of caregiver burden in the context of paediatric chronic illnesses in Pakistan. Interventions should emphasise financial aid, educational support and development of system-level changes to improve access to resources and medical care coordination. These insights call for policy and practice integration to support caregivers effectively.


Caregiver Burden , Tertiary Care Centers , Humans , Pakistan , Male , Female , Chronic Disease/psychology , Child , Adult , Child, Preschool , Caregiver Burden/psychology , Adolescent , Caregivers/psychology , Middle Aged , Infant , Qualitative Research , Surveys and Questionnaires , Young Adult , Cost of Illness
6.
J Patient Rep Outcomes ; 8(1): 48, 2024 May 02.
Article En | MEDLINE | ID: mdl-38695992

BACKGROUND: General population normative values for the widely used health-related quality of life (HRQoL) measure EORTC QLQ-C30 support the interpretation of trial results and HRQoL of patients in clinical practice. Here, we provide sex-, age- and health condition-specific normative values for the EORTC QLQ-C30 in the French general population. METHODS: French general population data was collected in an international EORTC project. Online panels with quota samples were used to recruit sex and age groups. Number and type of comorbidities were assessed. Descriptive statistics were used to calculate general population values for each QLQ-C30 scale, separately for sex, age, and presence of one- and more chronic health conditions. A multivariate linear regression model has been developed to allow estimating the effect of sex, age, and the presence for one- and more chronic health conditions on EORTC QLQ-C30 scores. Data was weighted according to United Nation statistics adjusting for the proportion of sex and age groups. RESULTS: In total, 1001 French respondents were included in our analyses. The weighted mean age was 47.9 years, 514 (51.3%) participants were women, and 497 (52.2%) participants reported at least one health condition. Men reported statistically significant better scores for Emotional Functioning (+9.6 points, p = 0.006) and Fatigue (-7.8 point; p = 0.04); women reported better profiles for Role Functioning (+8.7 points; p = 0.008) and Financial Difficulty (-7.8 points, p = 0.011). According to the regression model, the sex effect was statistically significant in eight scales; the effect of increasing age had a statistically significant effect on seven of the 15 EORTC QLQ-C30 scales. The sex- and age effect varied in its direction across the various scales. The presence of health conditions showed a strong negative effect on all scales. CONCLUSION: This is the first publication of detailed French normative values for the EORTC QLQ-C30. It aims to support the interpretation of HRQoL profiles in French cancer populations. The strong impact of health conditions on QLQ-C30 scores highlights the importance of considering the impact of comorbidities in cancer patients when interpreting HRQoL data.


Health Status , Quality of Life , Humans , Male , Female , Quality of Life/psychology , France/epidemiology , Middle Aged , Adult , Aged , Age Factors , Sex Factors , Surveys and Questionnaires , Young Adult , Reference Values , Chronic Disease/epidemiology , Chronic Disease/psychology , Adolescent , Aged, 80 and over
7.
Medicina (Kaunas) ; 60(4)2024 Apr 15.
Article En | MEDLINE | ID: mdl-38674280

Background and Objectives: Multimorbid patients require intensive treatment for their diseases. However, little research has been given to their treatment adherence as part of its management. This study aims to determine the prevalence and characteristics of chronic disease multimorbidity in Indonesia, alongside its treatment nonadherence. Materials and Methods: We conducted a cross-sectional study using the fifth Indonesian Family Life Survey database among adult subjects aged ≥ 15 years with multimorbidity. Our descriptive and multivariate analyses include sex, age, formal education, ethnicity, geographic residence, demographic residence, household size, insurance ownership, annual income, current self-perceived health status, missing active days, smoking behavior, and body mass index. Results: We identified 3515 multimorbid patients, constituting 30.8% prevalence across chronic disease patients. Hypertension was found to be a prevalent component of multimorbidity (61.2%), followed by digestive diseases (44.5%) and arthritis (30.3%). We identified that 36.4% of the subjects were nonadherent to their chronic disease treatment. Characteristics associated with nonadherence were found to be a good self-perception of health (aOR 1.79, 95% CI 1.54-2.08), active smoking behavior (aOR 1.51, 95% CI 1.14-1.99), no smoking behavior (aOR 1.44, 95% CI 1.08-1.90), missing seven active/productive days or less in the past month due to poor health (aOR 1.36, 95% CI 1.10-1.68), no insurance ownership (aOR 1.20, 95% CI 1.04-1.39), age of 15-65 years (aOR 1.25, 95% CI 1.01-1.55), income below IDR 40 million (aOR 1.23, 95% CI 1.04-1.46), and household size of 2-6 people (aOR 1.17, 95% CI 1.01-1.36). Conclusions: While the prevalence of multimorbidity in Indonesia is generally similar to that observed in previous studies, we have identified patient characteristics related to nonadherence. We suggest that patient's nonadherence was primarily dictated by their self-perception of health and treatment complexity. With the longstanding issue of nonadherence, this study indicated the need to consider creating patient-tailored treatment programs in clinical practice to improve adherence by considering individual patients' characteristics.


Multimorbidity , Humans , Indonesia/epidemiology , Male , Female , Middle Aged , Adult , Cross-Sectional Studies , Chronic Disease/psychology , Aged , Adolescent , Treatment Adherence and Compliance/statistics & numerical data , Treatment Adherence and Compliance/psychology , Prevalence , Young Adult , Hypertension/drug therapy , Hypertension/epidemiology , Hypertension/psychology
8.
BMC Geriatr ; 24(1): 377, 2024 Apr 26.
Article En | MEDLINE | ID: mdl-38671344

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.


Self-Management , Humans , Aged , Chronic Disease/therapy , Chronic Disease/psychology , Male , Female , Self-Management/methods , Self-Management/psychology , Middle Aged , Aged, 80 and over , Surveys and Questionnaires , China/epidemiology , Self Care/methods
9.
Medicine (Baltimore) ; 103(17): e37951, 2024 Apr 26.
Article En | MEDLINE | ID: mdl-38669401

This study aims to explore the relationship among diabetes-related distress, social-ecological support, and self-management behavior in older adults with type 2 diabetes mellitus (T2DM) and chronic complications. This cross-sectional study included older adults with T2DM in Shanghai, China, between January and July 2022. The problem areas in diabetes scale (PAID), the chronic illness resource survey (CIRS), and the diabetes self-management behavior for older (DSMB-O) were employed. A total of 264 participants (157 [59.47%] males, aged 71.07 ± 6.47 years) were included; their T2DM duration ranged from 5 to 30 years, with an average of 11.19 ± 6.96 years. The DSMB-O scores were negatively correlated with the PAID scores and positively correlated with CIRS scores. The CIRS scores were negatively correlated with the PAID scores. CIRS had a positive direct effect on DSMB-O, and CIRS had an indirect effect on DSMB-O through PAID. CIRS had a total effect on DSMB-O through PAID. The mediating effect made up 28.89% of the total effect. In older adults with T2DM and chronic complications, chronic illness resources were correlated with diabetes-related distress and self-management behavior. Chronic illness resources had both a direct effect on self-management behavior and an indirect effect through diabetes-related distress.


Diabetes Mellitus, Type 2 , Self-Management , Stress, Psychological , Humans , Diabetes Mellitus, Type 2/psychology , Diabetes Mellitus, Type 2/therapy , Male , Aged , Female , Self-Management/methods , Self-Management/psychology , Cross-Sectional Studies , China/epidemiology , Stress, Psychological/psychology , Stress, Psychological/etiology , Social Support , Chronic Disease/psychology , Diabetes Complications/psychology , Self Care/psychology , Aged, 80 and over
10.
Res Theory Nurs Pract ; 38(2): 171-192, 2024 Apr 25.
Article En | MEDLINE | ID: mdl-38663965

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.


Qualitative Research , Humans , Chronic Disease/psychology , Uncertainty , Female , Male , Adult , Middle Aged , Longitudinal Studies , Aged , Nursing Theory
12.
Scand J Caring Sci ; 38(2): 487-495, 2024 Jun.
Article En | MEDLINE | ID: mdl-38459748

BACKGROUND AND AIM: Mutuality is a process in which the patient participates and is involved in decision-making and care interventions. The aim of this study was to measure mutuality in the relationship between nurses and chronic illness patients. METHODS: This study had a cross-sectional design; the sample included 249 patients and 249 nurses. Mutuality was measured with the Nurse-Patient Mutuality in Chronic Illness scale. RESULTS: Patients had higher scores in almost all items (p < 0.001). Patients demonstrate high reciprocity towards nurses and the ability to express and share their emotions. Patients consider nurses their point of reference and share with them their health goals. Nurses show more difficulty in being mutual with the patient, especially in the aspects related to the sharing of emotions, objectives, and planning. The egalitarian relationship score was low in both patients and nurses. CONCLUSION: These findings are important to consider at clinical, educational, organisational, and policy levels. Nurse education and organisation must push towards respect for the wishes of patients, the possibility of expressing their choices, and their involvement in the care plan. PRACTICE IMPLICATIONS: In clinical practice, it is necessary to put the patients more at the centre, involving them in the identification of objectives and in making decisions.


Nurse-Patient Relations , Humans , Cross-Sectional Studies , Chronic Disease/psychology , Chronic Disease/nursing , Male , Female , Middle Aged , Adult , Aged , Aged, 80 and over , Surveys and Questionnaires , Young Adult
13.
Qual Life Res ; 33(6): 1633-1645, 2024 Jun.
Article En | MEDLINE | ID: mdl-38514600

PURPOSE: Many factors have been associated with health-related quality of life (HRQOL), and researchers often have tried to rank these contributing factors. Variable importance quantifies the net independent contribution of each individual predictor in a set of predictors to the prediction accuracy of the outcome. This study assessed relative importance (RI) of selected contributing factors to respondents' physically unhealthy days (PUD), mentally unhealthy days (MUD), activity limitation days (ALD), and EuroQol EQ-5D index derived from the Healthy Days measures (dEQ-5D). METHODS: Using data from the 2021 Behavioral Risk Factor Surveillance Systems (BRFSS), we estimated the RI of seven socio-demographics and seventeen chronic conditions and risk behaviors. A variable's importance was measured as the average increase in the coefficient of determination after adding the variable to all possible sub-models. RESULTS: After controlling for socio-demographics, arthritis and no physical activity were the most important variables for PUD with a RI of 10.5 and 10.4, respectively, followed by depression (RI = 8.5) and COPD (RI = 8.3). Depression was the most important variable for MUD with RI = 23.0 while all other 16 predictors had a RI < 7.0. Similar results were observed for ALD and dEQ-5D: depression was the most important predictor (RI = 16.3 and 15.2, respectively), followed by no physical activity, arthritis, and COPD (RI ranging from 7.1 to 9.2). CONCLUSION: This study quantified and ranked selected contributing factors of HRQOL. Results of this analysis also can be used to validate HRQOL measures based on domain knowledge of HRQOL.


Behavioral Risk Factor Surveillance System , Quality of Life , Humans , Quality of Life/psychology , Male , Female , Middle Aged , Adult , United States , Aged , Chronic Disease/psychology , Health Status , Surveys and Questionnaires , Young Adult
14.
J Fam Nurs ; 30(2): 174-184, 2024 May.
Article En | MEDLINE | ID: mdl-38528681

Family members' experience of integrating chronic illnesses or chronic conditions into family life is valuable information for health care professionals, such as nurses, to understand, improve, and adjust the care provided to families of chronically ill patients. Furthermore, the assessment of the experience of integrating chronic illness into family life can support family nursing interventions and reduce suffering. This study aimed to adapt and psychometrically test a new Likert-type questionnaire on the experience of integrating pediatric chronic illness into family life (EICI-FLQ) in two European samples. A sample of 164 primary caregivers of children/adolescents with chronic illnesses/conditions in Iceland and another sample of 237 primary caregivers with children/adolescents with chronic illnesses/conditions in Portugal completed the online questionnaire. Exploratory factor analysis of the Icelandic sample yielded support for a one-factor solution with acceptable internal reliability (Cronbach's α = .866). Confirmatory factor analysis of the one-factor structure in the Portuguese sample indicated good model fit and similar internal reliability (Cronbach's α = .838). This instrument has good psychometric characteristics and is a promising tool for measuring the experience of integrating pediatric chronic illness into family life in clinical and research settings.


Caregivers , Psychometrics , Humans , Male , Female , Chronic Disease/psychology , Surveys and Questionnaires/standards , Child , Adult , Portugal , Reproducibility of Results , Middle Aged , Adolescent , Iceland , Caregivers/psychology , Factor Analysis, Statistical , Family/psychology , Child, Preschool , Family Nursing/standards
15.
Patient Educ Couns ; 124: 108274, 2024 Jul.
Article En | MEDLINE | ID: mdl-38547640

OBJECTIVE: To explore the relationship between personal characteristics of older adults with multiple chronic conditions (MCCs) and perceived shared decision making (SDM) resp. decisional conflict. METHODS: In a video-observational study (N = 213) data were collected on personal characteristics. The main outcomes were perceived level of SDM and decisional conflict. The mediating variable was participation in the SDM process. A twostep mixed effect multilinear regression and a mediation analysis were performed to analyze the data. RESULTS: The mean age of the patients was 77.3 years and 56.3% were female. Health literacy (ß.01, p < .001) was significantly associated with participation in the SDM process. Education (ß = -2.43, p = .05) and anxiety (ß = -.26, p = .058) had a marginally significant direct effect on the patients' perceived level of SDM. Education (ß = 12.12, p = .002), health literacy (ß = -.70, p = .005) and anxiety (ß = 1.19, p = .004) had a significant direct effect on decisional conflict. The effect of health literacy on decisional conflict was mediated by participation in SDM. CONCLUSION: Health literacy, anxiety and education are associated with decisional conflict. Participation in SDM during consultations plays a mediating role in the relationship between health literacy and decisional conflict. PRACTICE IMPLICATIONS: Tailoring SDM communication to health literacy levels is important for high quality SDM.


Anxiety , Conflict, Psychological , Decision Making, Shared , Health Literacy , Patient Participation , Humans , Female , Male , Aged , Anxiety/psychology , Patient Participation/psychology , Aged, 80 and over , Decision Making , Educational Status , Chronic Disease/psychology , Chronic Disease/therapy , Physician-Patient Relations , Video Recording , Communication
16.
Health Sociol Rev ; 33(1): 24-42, 2024 Mar.
Article En | MEDLINE | ID: mdl-38471040

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


Kidney Failure, Chronic , Renal Dialysis , Humans , Renal Dialysis/psychology , Kidney Failure, Chronic/therapy , Kidney Failure, Chronic/psychology , Male , Female , Middle Aged , Chronic Disease/psychology , Chronic Disease/therapy , Interviews as Topic , Aged
17.
Soc Sci Med ; 348: 116787, 2024 May.
Article En | MEDLINE | ID: mdl-38547807

OBJECTIVE: Using a large longitudinal sample of adults from the Midlife in the United States (MIDUS) study, the present study extended a recently developed hierarchical model to determine how best to model the accumulation of stressors, and to determine whether the rate of change in stressors or traditional composite scores of stressors are stronger predictors of health outcomes. METHOD: We used factor analysis to estimate a stress-factor score and then, to operationalize the accumulation of stressors we examined five approaches to aggregating information about repeated exposures to multiple stressors. The predictive validity of these approaches was then assessed in relation to different health outcomes. RESULTS: The prediction of chronic conditions, body mass index, difficulty with activities of daily living, executive function, and episodic memory later in life was strongest when the accumulation of stressors was modeled using total area under the curve (AUC) of estimated factor scores, compared to composite scores that have traditionally been used in studies of cumulative stress, as well as linear rates of change. CONCLUSIONS: Like endogenous, biological markers of stress reactivity, AUC for individual trajectories of self-reported stressors shows promise as a data reduction technique to model the accumulation of stressors in longitudinal studies. Overall, our results indicate that considering different quantitative models is critical to understanding the sequelae and predictive power of psychosocial stressors from midlife to late adulthood.


Stress, Psychological , Humans , Stress, Psychological/psychology , Male , Female , Middle Aged , Longitudinal Studies , United States/epidemiology , Aged , Area Under Curve , Factor Analysis, Statistical , Adult , Activities of Daily Living/psychology , Chronic Disease/psychology , Body Mass Index
18.
Qual Life Res ; 33(5): 1335-1346, 2024 May.
Article En | MEDLINE | ID: mdl-38353890

PURPOSE: The high prevalence of multimorbidity in aging societies has posed tremendous challenges to the healthcare system. The aim of our study was to comprehensively assess the association of multimorbidity patterns and health-related quality of life (HRQOL) among rural Chinese older adults. METHODS: This was a cross-sectional study. Data from 4,579 community-dwelling older adults aged 60 years and above was collected by the clinical examination and questionnaire survey. Information on 10 chronic conditions was collected and the 3-Level EQ-5D (EQ-5D-3L) was adopted to measure the HRQOL of older adults. An exploratory factor analysis was performed to determine multimorbidity patterns. Regression models were fitted to explore the associations of multimorbidity patterns with specific health dimensions and overall HRQOL. RESULTS: A total of 2,503 (54.7%) participants suffered from multimorbidity, and they reported lower HRQOL compared to those without multimorbidity. Three kinds of multimorbidity patterns were identified including cardiovascular-metabolic diseases, psycho-cognitive diseases and organic diseases. The associations between psycho-cognitive diseases/organic diseases and overall HRQOL assessed by EQ-5D-3L index score were found to be significant (ß = - 0.097, 95% CI - 0.110, - 0.084; ß = - 0.030, 95% CI - 0.038, - 0.021, respectively), and psycho-cognitive diseases affected more health dimensions. The impact of cardiovascular-metabolic diseases on HRQOL was largely non-significant. CONCLUSION: Multimorbidity was negatively associated with HRQOL among older adults from rural China. The presence of the psycho-cognitive diseases pattern or the organic diseases pattern contributed to worse HRQOL. The remarkable negative impact of psycho-cognitive diseases on HRQOL necessiates more attention and relevant medical assistance to older rural adults.


Independent Living , Multimorbidity , Quality of Life , Rural Population , Humans , Quality of Life/psychology , Aged , Male , China/epidemiology , Female , Cross-Sectional Studies , Rural Population/statistics & numerical data , Middle Aged , Independent Living/psychology , Surveys and Questionnaires , Aged, 80 and over , Chronic Disease/psychology , Chronic Disease/epidemiology , Health Status
19.
Arch Dis Child ; 109(6): 488-496, 2024 May 17.
Article En | MEDLINE | ID: mdl-38383134

BACKGROUND: We assessed the biopsychosocial needs and key health drivers among children living with a common chronic illness, as baseline for a cluster randomised controlled trial of a child health system strengthening intervention. METHODS: Cross-sectional data were analysed from a large population sample of children from South London with asthma, eczema or constipation, as exemplar tracer conditions of a new integrated care service. Descriptive and regression analyses, accounting for sociodemographic factors, investigated social needs, psychosocial outcomes and quality of life associated with poor symptom control. RESULTS: Among 7779 children, 4371 children (56%) had at least one uncontrolled physical health condition. Across the three domains of physical health, mental health and social needs, 77.5% of children (n=4304 of 5554) aged 4-15 years had at least one unmet need, while 16.3% of children had three unmet needs. Children from the most socioeconomically disadvantaged quintile had a 20% increased risk of at least one poorly controlled physical condition (risk ratio (RR)=1.20, 95% CI: 1.11 to 1.31, p<0.001) compared with those from the least disadvantaged quintile. There was an 85% increased risk of clinically important mental health needs among children with uncontrolled asthma (RR=1.85, 95% CI: 1.65 to 2.07, p<0.001), 57% for active constipation (RR=1.57, 95% CI: 1.12 to 2.20, p<0.01) and 39% for uncontrolled eczema (RR=1.39, 95% CI: 1.24 to 1.56, p<0.001). Health-related quality of life was associated with poor symptom control. CONCLUSIONS: There is a large burden of unmet biopsychosocial needs among children with chronic illness, signalling an urgent need for prevention, early intervention and integrated biopsychosocial care.


Asthma , Constipation , Quality of Life , Humans , Child , Adolescent , Chronic Disease/psychology , Male , Female , Child, Preschool , Cross-Sectional Studies , Asthma/psychology , Asthma/therapy , Asthma/epidemiology , Constipation/psychology , Constipation/epidemiology , Child Health , Eczema/psychology , Eczema/therapy , Eczema/epidemiology , London/epidemiology , Health Services Needs and Demand , Needs Assessment , Mental Health , Child Health Services , Socioeconomic Factors
20.
J Clin Nurs ; 33(6): 2165-2177, 2024 Jun.
Article En | MEDLINE | ID: mdl-38291345

AIMS AND OBJECTIVES: To investigate whether chronic diseases are associated with higher COVID-19 vaccine hesitancy and explore factors that influence COVID-19 vaccine hesitancy in patients with chronic diseases. BACKGROUND: Vaccine hesitancy has been acknowledged as one of the greatest hazards to public health. However, little information is available about COVID-19 vaccine hesitancy among patients with chronic diseases who may be more susceptible to COVID-19 infection, severe disease or death. METHODS: From 6 to 9 August 2021, we performed an internet-based cross-sectional survey with 22,954 participants (14.78% participants with chronic diseases). Propensity score matching with 1:1 nearest neighbourhood was used to reduce confounding factors between patients with chronic diseases and the general population. Using a multivariable logistic regression model, the factors impacting COVID-19 vaccine hesitancy were identified among patients with chronic diseases. RESULTS: Both before and after propensity score matching, patients with chronic diseases had higher COVID-19 vaccine hesitancy than the general population. In addition, self-reported poor health, multiple chronic diseases, lower sociodemographic backgrounds and lower trust in nurses and doctors were associated with COVID-19 vaccine hesitancy among patients with chronic diseases. CONCLUSIONS: Patients with chronic diseases were more hesitant about the COVID-19 vaccine. Nurses should focus on patients with chronic diseases with poor health conditions, low socioeconomic backgrounds and low trust in the healthcare system. RELEVANCE TO CLINICAL PRACTICE: Clinical nurses are recommended to not only pay more attention to the health status and sociodemographic characteristics of patients with chronic diseases but also build trust between nurses and patients by improving service levels and professional capabilities in clinical practice. PATIENT OR PUBLIC CONTRIBUTION: Patients or the public were not involved in setting the research question, the outcome measures, or the design or implementation of the study. However, all participants were invited to complete the digital informed consent and questionnaires.


COVID-19 Vaccines , COVID-19 , Propensity Score , Vaccination Hesitancy , Humans , Cross-Sectional Studies , Male , Female , COVID-19 Vaccines/administration & dosage , Middle Aged , COVID-19/prevention & control , COVID-19/psychology , Chronic Disease/psychology , Adult , Vaccination Hesitancy/psychology , Vaccination Hesitancy/statistics & numerical data , Aged , Internet , Surveys and Questionnaires , SARS-CoV-2
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