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1.
J Appl Res Intellect Disabil ; 37(3): e13229, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38644053

RESUMEN

BACKGROUND: Virtual mindfulness may be helpful for individuals with intellectual disabilities in the context of COVID-related disruptions of in-person programming, such as Special Olympics (SO). This study examined the feasibility of a virtual mindfulness intervention for SO athletes and their caregivers. METHOD: SO athletes (n = 44) and their caregivers (n = 29) participated in a 6-week adapted virtual mindfulness intervention. Athletes completed mindfulness and well-being questionnaires prior to, immediately following, and 3-months post-intervention. Caregivers completed questionnaires assessing their own stress, mindfulness, and well-being, as well as athlete mental health. Exit interviews were conducted immediately following the intervention. RESULTS: The intervention was feasible in terms of demand, implementation, acceptability, and limited testing efficacy. There were significant improvements in athlete well-being and mental health, and caregiver stress and mindfulness post-intervention. CONCLUSIONS: Adapted virtual mindfulness groups may be an effective intervention in improving the well-being of adults with intellectual disabilities and their caregivers.


Asunto(s)
Atletas , Cuidadores , Estudios de Factibilidad , Discapacidad Intelectual , Atención Plena , Humanos , Atención Plena/métodos , Cuidadores/psicología , Adulto , Masculino , Atletas/psicología , Femenino , COVID-19 , Adulto Joven , Persona de Mediana Edad , Estrés Psicológico/terapia , Deportes
2.
Geriatr Nurs ; 57: 163-168, 2024 Apr 24.
Artículo en Inglés | MEDLINE | ID: mdl-38663184

RESUMEN

This study was aimed to determine knowledge level of informal caregivers daily care, emergency situations and the effect of the socio-demographic characteristics of informal caregivers on their knowledge levels. This descriptive and cross-sectional study was conducted between November 1, 2021, and June 30, 2022, with 83 (79.8 %) informal caregivers living in rural areas in northeast Türkiye. The data were collected using the Barthel Index for Activities of Daily Living, the Socio-Demographic Questionnaire, and the Questionnaire for Information on Elderly Care and Situations Requiring Emergency Care. 54 (65.1 %) of caregivers were women, 74 (89.2 %) did not receive training on the daily care of the elderly. A statistically significant difference was determined between the level of knowledge of caregivers about elderly care, caring experience for the elderly and emergency situations, their education level, and their perceptions of needing further information about elderly care (p < 0.05). Informal care givers should be trained by nurses.

3.
Geriatr Nurs ; 57: 179-187, 2024 Apr 24.
Artículo en Inglés | MEDLINE | ID: mdl-38663186

RESUMEN

Caregivers of people living with dementia face strain, reduced self-care, and poorer health status. However, research examining the links among those outcomes is limited. We explored the association between caregiver strain and the impact of caregiving on health status and identified the mediating role of self-care difficulty in this association. In the national caregiving dataset "Caregiving in the U.S. 2020," we included 312 caregivers in this study. Demographics, caregiving characteristics, a composite scale for caregiver strain, and single-item questions for the impact of caregiving on health status and self-care difficulty were used. Descriptive statistics and mediation analysis were conducted. Results revealed that higher caregiver strain was associated with higher self-care difficulty (OR 2.054, p < .001) and negative health changes due to caregiving (OR 2.719, p < .001). Self-care difficulty partially mediated this association. These results indicated the need to explore interventions or resources to offer caregivers to encourage their self-care awareness and activities.

4.
J Am Med Dir Assoc ; 2024 Apr 22.
Artículo en Inglés | MEDLINE | ID: mdl-38663452

RESUMEN

OBJECTIVES: Home-based primary care (HBPC) provides interdisciplinary, longitudinal, comprehensive care at home to homebound older adults. The prevalence of dementia among HBPC recipients is approximately 50%. To date, little research has been performed to determine whether dementia-specific interventions have been conducted in HBPC or their efficacy. We performed a scoping review to assess the landscape of dementia interventions in HBPC. DESIGN: Systematic scoping review. SETTING AND PARTICIPANTS: Care delivery programs for patients or caregivers of patients with dementia for the purpose of improving the management of dementia in the setting of HBPC. METHODS: The PRISMA-ScR protocol was followed. Literature searches were performed using PubMed, Embase, and Scopus for articles on dementia-focused interventions implemented in HBPC. Articles were excluded if they consisted of abstracts only, were not in English, or were not dementia interventions in HBPC. RESULTS: A total of 1657 unique titles and abstracts were screened. Overall, 1584 titles and abstracts were excluded, resulting in 73 full-text studies to assess for eligibility. Of these 73 full-text studies, 1 study met criteria for inclusion, an observational study assessing the implementation of the Resources for Enhancing Alzheimer's Caregiver Health (REACH) intervention in Veterans Affairs HBPC. That study found the intervention to be effective in reducing caregiver burden, with a decrease of 2 hours on duty per day, trending toward significance. Among the excluded 72 full-text studies, some studies included potentially relevant interventions that could be translated into HBPC care, including dementia interventions that targeted long-term services and supports, office-based primary care and other nonhome settings such as nursing homes, and home-based palliative care. CONCLUSIONS AND IMPLICATIONS: Despite high prevalence of dementia among homebound older adults receiving HBPC, there are a dearth of studies on HBPC-specific dementia interventions. Future studies should consider adapting and testing interventions found to be effective in other settings to HBPC.

5.
BMC Cancer ; 24(1): 494, 2024 Apr 18.
Artículo en Inglés | MEDLINE | ID: mdl-38637744

RESUMEN

BACKGROUND: Informal caregivers (ICs) of patients with cancer provide essential and mainly uncompensated care. A self-perceived preparedness to care for the patient is associated with a lower caregiver burden, described as the extent to which caregiving is perceived as having adverse effects on IC functioning and well-being. ICs' well-being is associated with patient-perceived quality of care, suggesting that interventions to optimize ICs' health are essential in order to improve patient care. Head and neck cancer (HNC) is the seventh most common malignant disease in the world. The disease and its treatment have a significant negative impact on the patient's health and quality of life. Symptoms usually interfere with swallowing, food and fluid intake, breathing, speaking, and communication. ICs frequently manage patients' symptoms and side effects, especially problems related to nutrition and oral pain, without being properly prepared. Carer eSupport is an Internet-administered intervention, based on focus group discussions with ICs, developed in collaboration with ICs and healthcare professionals, tested for feasibility, and deemed feasible. This study protocol outlines the methods of investigating the effects of Carer eSupport plus support as usual (SAU) on self-reported preparedness for caregiving, caregiver burden, and well-being in the ICs of patients with HNC, compared with ICs receiving SAU only. METHODS AND ANALYSIS: In this randomized controlled trial, 110 ICs of patients with HNC, undergoing radiotherapy combined with surgery and/or medical oncological treatment, will be randomized (1:1) to Carer eSupport plus SAU or SAU only. Data will be collected at baseline (before randomization), post-intervention (after 18 weeks), and 3 months after post-intervention. The primary outcome is self-reported preparedness for caregiving. Secondary outcomes are self-reported caregiver burden, anxiety, depression, and health-related quality of life. The effect of Carer eSupport plus SAU on preparedness for caregiving and secondary outcomes, compared with SAU only, will be evaluated by intention to treat analyses using linear regression models, mixed-model regression, or analysis of covariance. DISCUSSION: If proven effective, Carer eSupport has the potential to significantly improve ICs' preparedness for caregiving and their wellbeing, thereby improving patient-perceived quality of care and patient wellbeing. TRIAL REGISTRATION: ClinicalTrials.gov; NCT06307418, registered 12.03.2024 (https://clinicaltrials.gov/search? term=NCT06307418).


Asunto(s)
Cuidadores , Neoplasias de Cabeza y Cuello , Humanos , Calidad de Vida , Neoplasias de Cabeza y Cuello/terapia , Carga del Cuidador , Internet , Ensayos Clínicos Controlados Aleatorios como Asunto
6.
J Appl Gerontol ; : 7334648241245527, 2024 Apr 17.
Artículo en Inglés | MEDLINE | ID: mdl-38629451

RESUMEN

There are 200+ tested interventions for care partners (family, friends, and fictive kin) of people living with dementia (PLWD). But these interventions do not systematically cover relevant settings. Nor do these interventions affect all relevant outcomes that matter to people and healthcare systems. We present an evidence map of settings and outcomes from translated interventions to identify gaps. Of 190 studies identified, 31 unique interventions were retained in the evidence map. Identified setting gaps included studies set solely in hospitals/medical centers or set in multiple settings. Identified outcome gaps included interventions that improved care partner beliefs about providing care, care partner negative coping strategies, PLWD resources (e.g., social support), and PLWD coping strategies. Armed with an understanding of present gaps, we call on researchers to fill the identified gaps to ensure systematic coverage of settings and evaluation of outcomes that matter to people and healthcare systems.

7.
Int J Qual Stud Health Well-being ; 19(1): 2341989, 2024 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-38657183

RESUMEN

BACKGROUND: Parkinson's disease is a progressive neurodegenerative disorder. The majority of the nearly 9 million people living with Parkinson's disease are men. As such, caregiving is often assumed by wives as the disease progresses. However, there is little research about the lived experience of wives as they transition to caregivers. OBJECTIVE: To describe the lived experience of wife caregivers of male spouses living at home with Parkinson's disease. METHODS: A descriptive phenomenological study. Semi-structured interviews were recorded and transcribed for analysis in Atlas.ti using Colaizzi's method. RESULTS: Thirteen women, aged 50 to 83 years, were interviewed. Five themes emerged from the analysis, (1) caregiver who? (2) taking it day by day, (3) not sure what to do next, (4) just too much, and (5) caring is your soul's growth, to support the central theme "there is no cure for caregiving." CONCLUSION: Transitioning from wife to caregiver was a gradual but difficult process. Although the wife caregivers wanted to be part of the health care team, they remained outsiders. Clinicians need to recognize the wives as care coordinators linking medical management with home care. Policy makers need to develop reimbursement models that provide wife caregivers with support groups, education programs, and telemental health services.


Asunto(s)
Cuidadores , Enfermedad de Parkinson , Esposos , Humanos , Enfermedad de Parkinson/enfermería , Enfermedad de Parkinson/psicología , Femenino , Cuidadores/psicología , Esposos/psicología , Persona de Mediana Edad , Anciano , Anciano de 80 o más Años , Masculino , Investigación Cualitativa , Adaptación Psicológica , Apoyo Social
8.
Perspect Behav Sci ; 47(1): 71-105, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38660504

RESUMEN

The interactions between infants and caregivers are critical to infant development and caregiver well-being. Traditional developmental research has primarily emphasized the infant's development when studying infant-caregiver interactions, but a less commonly assessed feature of those interactions is the effect of the infant's crying on the caregiver's behavior. Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) method (Moher et al., Public Library of Science Medicine, 6(7), e1000097, 2009), we conducted a systematic review of the literature evaluating the effects of crying on caregiver behavior. We searched for peer-reviewed articles in the Scopus and Web of Science Core Collection databases that included research studies in which researchers observed and manipulated infant crying and simultaneously measured features of caregiver behavior (actual or analogue). We used this body of literature to evaluate the existing evidence of the effects of crying on caregiver behavior, address the limitations and current gaps in our understanding of those interactions, and identify areas for future behavioral research.

9.
Artículo en Inglés | MEDLINE | ID: mdl-38645569

RESUMEN

Background: Parents of children with neurodevelopmental conditions (NDC) are at risk of experiencing elevated levels of parental stress. Access to robust instruments to assess parental stress is important in both clinical and research contexts. Objective: We aimed to evaluate the psychometric properties of a Swedish version of the Parental Stress Scale (PSS), completed by parents of 3- to 17-year-old children, with and without NDCs. Method: Main analyses were conducted on data from three independent samples: a community sample (n=1018), a treatment-seeking sample of parents of children with various disabilities (n=653), and a sample of parents of children with Attention-Deficit/Hyperactivity Disorder (ADHD) who themselves reported varying ADHD symptom severities (n=562). Additional analyses were enabled by the use of data from a complementary test-retest sample (n=337). Results: The internal consistency of the PSS was good (Cronbach's alpha, α=.87) and its test-retest reliability moderate (ICC=.66). The scale correlated in the expected direction with related constructs (r=.50-.56 in the community sample). An exploratory factor analysis found its internal structure to reflect two aspects of parental stress: Lack of Parental Rewards and Role Satisfaction (factor 1, α=.90) and Parental Stressors and Distress (factor 2, α=.85). The treatment-seeking parents of children with disabilities reported higher parental stress than community reference parents (p<.001; Cohen's d=1.17). Moreover, we found that parents with high ADHD symptom severity reported higher parental stress than parents with low ADHD symptom severity (p<.001; d=0.39). Conclusion: In summary, we found evidence in support of the reliability and validity of the PSS, which overall was judged to be useful as a measure of parental stress in a Swedish context. In addition, our results underline the importance of considering parental stress and related needs in assessments and intervention planning involving families of children with NDCs.

10.
Patient Prefer Adherence ; 18: 879-892, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38645699

RESUMEN

Purpose: To (1) investigate the changes in 5 domains (lack of family support, impact on finance, impact on daily schedule, impact on health, and self-esteem) of family caregiver (FC) burden and overall burden for first diagnosed colorectal cancer; (2) exploring changes in FC burden for colorectal cancer patients over time and analyze the trajectory and sub-trajectories of FC burden; and (3) identify the FC-related and patient-related factors most associated with the overall FC burden and each of its sub-trajectories. Patients and methods: This study is a descriptive longitudinal study. A convenience sampling method was used to recruit patients with colorectal cancer and their primary FCs from seven hospitals. Results: A total of 185 pairs of first diagnosed colorectal cancer patient and their FC were investigated for 4 times. The results reveal the overall burden and 5 domains of burden showed a trend of increasing first and then decreasing, and the burden was the heaviest at the time in the middle of chemotherapy. In the course of time, the aspect that caused the greatest amount of burden on average transitioned from the "effect on daily schedule" (range= 3.3 and 3.9) to the "effect on finances" (range= 3.1 to 3.4). Conclusion: Almost 88% of FCs have a either a moderate or a high level of burden. The quality of life of patients and the self-efficacy, social support and care ability of FCs have a great impact on the overall FC burden and each sub-trajectory.

11.
Nurs Rep ; 14(2): 931-945, 2024 Apr 15.
Artículo en Inglés | MEDLINE | ID: mdl-38651483

RESUMEN

Introduction: Chronic non-communicable diseases, including diseases of mental origin such as Alzheimer's, affect all age groups and countries. These diseases have a major impact on the patient and their family environment. It is interesting that different questionnaires are measured in the same direction, given that different health questionnaires are used to measure caregiver burden. Objectives: To identify which type of intervention is the most appropriate to improve the health of the primary caregiver in patients with dementia. To understand the role played by the nurse within multidisciplinary teams and to know whether the different questionnaires used in the studies measure caregiver health in the same direction. Methods: A systematic search of the published and gray literature was carried out without restriction of the language used in the studies. Caregiver burden of patients with dementia, receiving an intervention to improve caregiver burden, was assessed. Standardized mean difference was used as the effect size measure, and there were possible causes of heterogeneity in the effect size. Results: In total, 1512 records were found, and 39 articles with 4715 participants were included. We found individual information with an effect of 0.48 (CI95%: 0.18; 0.79; I2 = 0%); group therapy with an effect of 0.20 (CI95%: 0.08; 0.31; I2 = 6%); workshops with an effect of 0.21 (CI95%: 0.01; I2 = 48%) and 0.32 (CI95%: 0.01; 0.54; I2 = 0%) when a nurse intervenes; respite care with an effect of 0.22 (CI95%: 0.05; 0.40; I2 = 66%); individual therapy with an effect of 0.28 (CI95%: 0.15; 0.4; I2 = 68%); and support groups with an effect of 0.07 (CI95%: 0; 0.15; I2 = 78%). Conclusions: The magnitude of the effects of the interventions has been low-moderate. Different instruments are not associated with the magnitude of the effect. The presence of nurses improves the effect of the intervention on caregivers when it is carried out in the form of workshops.

12.
Behav Sci (Basel) ; 14(4)2024 Apr 15.
Artículo en Inglés | MEDLINE | ID: mdl-38667125

RESUMEN

Lower limb amputation affects several parameters of a patient's life. Family caregivers providing care for these patients experience multiple feelings and needs; knowing caregivers' needs is essential to prepare them for this new role, as well as the health planning of this type of care. This scoping review aimed to identify and map the needs of family caregivers of people with lower limb amputations. This scoping review was conducted in accordance with the JBI methodological framework and the PRISMA-ScR reporting guidelines. A bibliographical search was carried out on the needs of family caregivers of lower limb amputees in 15 databases. Two independent reviewers extracted data using a data extraction tool developed for this scoping review. Eight studies were included in the present review (n = 6 quantitative studies; n = 2 reviews). Results indicate that family caregivers of people with lower limb amputations may experience an extensive range of needs, as follows: (i) mental health and psychological support, (ii) physical health, (iii) health and well-being, (iv) supportive care, (v) social support, and (vi) educational/informational support. The needs identified in this review can help to develop interventions and programs that provide better support during the situational transition process.

13.
JMIR Form Res ; 8: e54168, 2024 Apr 04.
Artículo en Inglés | MEDLINE | ID: mdl-38573761

RESUMEN

BACKGROUND: About 11 million Americans are caregivers for the 6.7 million Americans currently living with dementia. They provide over 18 billion hours of unpaid care per year, yet most have no formal dementia education or support. It is extremely difficult for clinicians to keep up with the demand for caregiver education, especially as dementia is neurodegenerative in nature, requiring different information at different stages of the disease process. In this digital age, caregivers often seek dementia information on the internet, but clinicians lack a single, reliable compendium of expert-approved digital resources to provide to dementia caregivers. OBJECTIVE: Our aim was to create a dementia caregiver resources website to serve as a hub for user-friendly, high-quality, and expert-reviewed dementia educational resources that clinicians can easily supply to family caregivers of people with dementia. METHODS: An interdisciplinary website development team (representing dementia experts from occupational therapy, nursing, social work, geriatrics, and neurology) went through 6 iterative steps of website development to ensure resource selection quality and eligibility rigor. Steps included (1) resource collection, (2) creation of eligibility criteria, (3) resource organization by topic, (4) additional content identification, (5) finalize resource selection, and (6) website testing and launch. Website visits were tracked, and a 20-item survey about website usability and utility was sent to Veterans Affairs tele-geriatrics interdisciplinary specialty care groups. RESULTS: Following website development, the dementia caregiver resource website was launched in February 2022. Over the first 9 months, the site averaged 1100 visits per month. The 3 subcategories with the highest number of visits were "general dementia information," "activities of daily living," and "self-care and support." Most (44/45, 98%) respondents agreed or strongly agreed that the website was easy to navigate, and all respondents agreed or strongly agreed that the resources were useful. CONCLUSIONS: The iterative process of creating the dementia caregiver resources website included continuous identification, categorization, and prioritization of resources, followed by clinician feedback on website usability, accessibility, and suggestions for improvement. The website received thousands of visits and positive clinician reviews in its first 9 months. Results demonstrate that an expert-vetted, nationally, and remotely available resource website allows for easy access to dementia education for clinicians to provide for their patients and caregivers. This process of website development can serve as a model for other clinical subspecialty groups seeking to create a comprehensive educational resource for populations who lack easy access to specialty care.

14.
Public Health Nutr ; 27(1): e110, 2024 Apr 05.
Artículo en Inglés | MEDLINE | ID: mdl-38576146

RESUMEN

OBJECTIVE: To explore the differences in social norms around parents' food provision in different provision contexts and by demographics. DESIGN: Qualitative study using story completion methodology via an online survey in September 2021. Adults 18+ with or without children were randomised to one of three story stems focusing on food provision in different contexts; food provision at home (non-visitor), with visitors present and with the involvement of sport. Stories were coded and themed using thematic analysis. A content analysis was performed to determine count and frequency of codes in stories by participant demographics and story assumptions. SETTING: Australia. PARTICIPANTS: Adults (n 196). RESULTS: Nine themes were identified from the data resulting in four social norms around providing healthy foods and justifying non-adherence to healthy eating guidelines, evolution of family life and mealtime values, the presence of others influencing how we engage with food provision and unhealthy foods used as incentives/rewards in sport. Following content analysis, no differences of themes or norms by participant demographics or story assumptions were found. CONCLUSIONS: We identified pervasive social norms around family food provision and further identified how contextual factors resulted in variations or distinct norms. This highlights the impact context may have on the social norms parents face when providing food to their children and the opportunities and risks of leveraging these social norms to influence food choice in these contexts. Public health interventions and practitioners should understand the influence of context and social environments when promoting behaviour change and providing individualised advice. Future research could explore parents' experiences of these norms and to what extent they impact food choice.


Asunto(s)
Alimentos , Normas Sociales , Niño , Adulto , Humanos , Australia , Padres , Preferencias Alimentarias
15.
JMIR Mhealth Uhealth ; 12: e54244, 2024 Apr 08.
Artículo en Inglés | MEDLINE | ID: mdl-38602303

RESUMEN

Background: Telemedicine technology is a rapidly developing field that shows immense potential for improving medical services. In palliative care, informal caregivers assume the primary responsibility in patient care and often face challenges such as increased physical and mental stress and declining health. In such cases, telemedicine interventions can provide support and improve their health outcomes. However, research findings regarding the use of telemedicine among informal caregivers are controversial, and the efficacy of telemedicine remains unclear. Objective: This study aimed to evaluate the impacts of telemedicine on the burden, anxiety, depression, and quality of life of informal caregivers of patients in palliative care. Methods: A systematic literature search was conducted using the PubMed, Embase, Web of Science, CENTRAL, PsycINFO, CINAHL Plus with Full Text, CBM, CNKI, WanFang, and VIP databases to identify relevant randomized controlled trials published from inception to March 2023. Two authors independently screened the studies and extracted the relevant information. The methodological quality of the included studies was assessed using the Cochrane risk-of-bias tool. Intervention effects were estimated and sensitivity analysis was conducted using Review Manager 5.4, whereas 95% prediction intervals (PIs) were calculated using R (version 4.3.2) and RStudio. Results: A total of 9 randomized controlled trials were included in this study. The meta-analysis indicated that telemedicine has reduced the caregiving burden (standardized mean differences [SMD] -0.49, 95% CI -0.72 to -0.27; P<.001; 95% PI -0.86 to -0.13) and anxiety (SMD -0.23, 95% CI -0.40 to -0.06; P=.009; 95% PI -0.98 to 0.39) of informal caregivers; however, it did not affect depression (SMD -0.21, 95% CI -0.47 to 0.05; P=.11; 95% PI -0.94 to 0.51) or quality of life (SMD 0.35, 95% CI -0.20 to 0.89; P=.21; 95% PI -2.15 to 2.85). Conclusions: Although telemedicine can alleviate the caregiving burden and anxiety of informal caregivers, it does not significantly reduce depression or improve their quality of life. Further high-quality, large-sample studies are needed to validate the effects of telemedicine. Furthermore, personalized intervention programs based on theoretical foundations are required to support caregivers.


Asunto(s)
Cuidados Paliativos , Telemedicina , Humanos , Cuidadores , Calidad de Vida , Estrés Psicológico , Ensayos Clínicos Controlados Aleatorios como Asunto
16.
JMIR Form Res ; 8: e52344, 2024 Apr 19.
Artículo en Inglés | MEDLINE | ID: mdl-38640473

RESUMEN

BACKGROUND: Functional impairment is one of the most decisive prognostic factors in patients with complex chronic diseases. A more significant functional impairment indicates that the disease is progressing, which requires implementing diagnostic and therapeutic actions that stop the exacerbation of the disease. OBJECTIVE: This study aimed to predict alterations in the clinical condition of patients with complex chronic diseases by predicting the Barthel Index (BI), to assess their clinical and functional status using an artificial intelligence model and data collected through an internet of things mobility device. METHODS: A 2-phase pilot prospective single-center observational study was designed. During both phases, patients were recruited, and a wearable activity tracker was allocated to gather physical activity data. Patients were categorized into class A (BI≤20; total dependence), class B (2060; moderate or mild dependence, or independent). Data preprocessing and machine learning techniques were used to analyze mobility data. A decision tree was used to achieve a robust and interpretable model. To assess the quality of the predictions, several metrics including the mean absolute error, median absolute error, and root mean squared error were considered. Statistical analysis was performed using SPSS and Python for the machine learning modeling. RESULTS: Overall, 90 patients with complex chronic diseases were included: 50 during phase 1 (class A: n=10; class B: n=20; and class C: n=20) and 40 during phase 2 (class B: n=20 and class C: n=20). Most patients (n=85, 94%) had a caregiver. The mean value of the BI was 58.31 (SD 24.5). Concerning mobility aids, 60% (n=52) of patients required no aids, whereas the others required walkers (n=18, 20%), wheelchairs (n=15, 17%), canes (n=4, 7%), and crutches (n=1, 1%). Regarding clinical complexity, 85% (n=76) met patient with polypathology criteria with a mean of 2.7 (SD 1.25) categories, 69% (n=61) met the frailty criteria, and 21% (n=19) met the patients with complex chronic diseases criteria. The most characteristic symptoms were dyspnea (n=73, 82%), chronic pain (n=63, 70%), asthenia (n=62, 68%), and anxiety (n=41, 46%). Polypharmacy was presented in 87% (n=78) of patients. The most important variables for predicting the BI were identified as the maximum step count during evening and morning periods and the absence of a mobility device. The model exhibited consistency in the median prediction error with a median absolute error close to 5 in the training, validation, and production-like test sets. The model accuracy for identifying the BI class was 91%, 88%, and 90% in the training, validation, and test sets, respectively. CONCLUSIONS: Using commercially available mobility recording devices makes it possible to identify different mobility patterns and relate them to functional capacity in patients with polypathology according to the BI without using clinical parameters.

17.
Qual Life Res ; 2024 Apr 21.
Artículo en Inglés | MEDLINE | ID: mdl-38644418

RESUMEN

OBJECTIVES: Given the escalating demand for care services, understanding the impact of informal caregiving, providing unpaid care for family members, on own health is essential. This study longitudinally analyzed the association of caregiving (and different caregiver types) with mental, physical, and self-rated health. Urban-rural, gender, and employment heterogeneity were further investigated. METHOD: Based on three-wave data (2011, 2013, and 2018) from the China Health and Retirement Longitudinal Study, we used growth curve models to assess the impact of informal caregiving (providing care to family members) and caregiver types (caregivers to grandchildren, parents, spouses, or multiple family members) on three health outcomes (depressive symptoms, self-rated health, and activities of daily living limitations). RESULTS: Our study included 13,377 individuals. Results showed a negative correlation of caregiving with mental, physical, and self-rated health. Compared to noncaregivers, spousal caregivers and multiple caregivers were both associated with worsening mental, self-rated, and physical health. In contrast, adult child caregivers were only negatively associated with mental health, and grandparent caregiving did not significantly affect any health outcomes. Further heterogeneity analysis showed that gender did not moderate the relationship between caregiving and health, whereas the negative association between caregiving and health was more pronounced among the rural population and those employed in agriculture. DISCUSSION: Findings from the present study suggest that caregiving is detrimental to health, and recommend considering caregiver type when examining caregiving and health. These findings have vital implications for policymakers in addressing the challenges of structuring and implementing a sustainable informal care system.

18.
Int J Neurosci ; : 1-14, 2024 Apr 22.
Artículo en Inglés | MEDLINE | ID: mdl-38646703

RESUMEN

The research was conducted to investigate the improvement of agitated behaviors, cognitive functions, and negative emotions among patients with senile dementia and the burden of caregivers after simulated presence therapy (SPT) intervention. 85 patients with senile dementia were included as the research subjects and divided into control group (40 cases performed with routine nursing) and observation group (45 cases undergoing routine nursing combined with SPT) via a random number table method. Cohen-Mansfield agitation inventory (CAMI) and protective constraint were used to assess the improvement of agitated behaviors among patients. Besides, apathy evaluation scale-informant (AES-I), functional independence measure (FIM), self-rating depression scale (SDS), self-rating anxiety scale (SAS), clock drawing test, and caregiver burden inventory (CBI) were adopted to evaluate the differences in apathy, daily living and sociability, depression, anxiety, cognitive functions, and caregiver burden between the two groups. It was demonstrated that CAMI score, the duration of protective constraint use, AES-I score, SDS score, SAS score, and CBI score among patients in observation group all apparently decreased compared with those in control group after the intervention. In contrast, FIM and clock drawing test scores both notably increased (P < 0.05). The above findings suggested that SPT could obviously reduce the incidence of agitated behaviors, improve the level of apathy, daily living and sociability, depression, anxiety, and cognitive functions, and relieve caregiver burden among patients with senile dementia during SPT intervention for patients with senile dementia.

19.
Pediatr Blood Cancer ; 71(6): e30984, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38584336

RESUMEN

BACKGROUND: Changes in health behaviors and weight are common during the early phases of pediatric acute lymphoblastic leukemia treatment, and may negatively impact treatment tolerability. Given that ALL is most prevalent in children, caregivers play an essential role in shaping health behaviors during treatment. This study presents a qualitative analysis of semi-structured interviews with caregivers of youth in the early phases of ALL treatment. PROCEDURE: Caregivers (N = 17, 95% female) of a child (M age = 6.76 years) diagnosed with ALL and on treatment for less than 1 year (M = 8.7 months since diagnosis) completed a semi-structured interview about perceptions of their child's nutrition, physical activity, sedentary time, and weight during ALL treatment. Thematic analysis followed Braun and Clark's six-step framework (2006). Two coders established reliability (alpha = .88) and used a multi-pass coding system to extract themes. RESULTS: Caregivers' concerns around their child's weight during ALL treatment primarily centered around avoiding malnutrition. Weight gain during treatment was less of a concern and often viewed as protective. Caregivers reported encouraging their child to eat palatable, calorie-dense foods to mitigate risk for weight loss. Caregivers also expressed concern that children were less active and more sedentary due to treatment-related pain. Caregivers discussed health behaviors during treatment as being child-directed, rather than parent- or provider-directed. CONCLUSION: Future interventions may consider strategies to engage in joint parent-child decisions and caregiver education around risks of excessive weight gain during treatment. Interventions should include anticipatory guidance and aim to support parents in developing skills to support their child's health behaviors during treatment.

20.
JMIR Aging ; 7: e55132, 2024 Apr 17.
Artículo en Inglés | MEDLINE | ID: mdl-38630527

RESUMEN

BACKGROUND: The increasing prevalence of Alzheimer disease and Alzheimer disease-related dementia in the United States has amplified the health care burden and caregiving challenges, especially for caregivers of people living with dementia. A web-based care planning tool, Olera.care, was developed to aid caregivers in managing common challenges associated with dementia care. OBJECTIVE: This study aims to preliminarily evaluate the quality and usability of the Olera.care platform and assess the preferences of using the technology and interests in learning about different older adult care services among caregivers. METHODS: For interview 1, we aim to understand caregiving needs and let the participants start engaging with the platform. After they engage with the platform, we schedule the second interview and let the participants complete the Mobile Application Rating Scale. The survey also included sociodemographic characteristics, caregiving experiences, communication preferences in technology adoption, and older adult care service use and interests. Descriptive statistics were used to describe the quality and usability of the platform and characteristics of the participants. We conducted 2-sample 2-tailed t tests to examine the differences in the Mobile Application Rating Scale evaluation scores by caregiver characteristics. RESULTS: Overall, 30 adult caregivers in Texas completed the evaluation. The majority were aged ≥50 years (25/30, 83%), women (23/30, 77%), White (25/30, 83%), and financially stable (20/30, 67%). The Olera.care platform evaluation showed high satisfaction, with an overall mean rating of 4.57 (SD 0.57) of 5, and scored well in engagement (mean 4.10, SD 0.61), functionality (mean 4.46, SD 0.44), aesthetics (mean 4.58, SD 0.53), and information quality (mean 4.76, SD 0.44) consistently across all participants. A statistically significant difference (P=.02) was observed in functionality evaluation scores by duration of caregiving, with caregivers dedicating more hours to care rating it higher than those providing less care (mean 4.6, SD 0.4 vs mean 4.2, SD 0.5). In addition, caregivers with less caregiving experience reported significantly higher evaluation scores for aesthetics (P=.04) and information quality (P=.03) compared to those with longer years of caregiving. All participants expressed a willingness to recommend the app to others, and 90% (27/30) rated the app overall positively. Most of the participants (21/30, 70%) favored anonymous interactions before receiving personalized feedback and preferred computer browsers over mobile apps. Medical home health services were the most used, with a diverse range of services being used. Caregiver support groups, medical providers, memory care, meal services, and adult day care were among the most desired services for future exploration. CONCLUSIONS: The Olera.care web-based platform is a practical, engaging, easy-to-use, visually appealing, and informative tool for dementia caregivers. Future development and research are essential to enhance the platform and comprehensively evaluate it among a broader population.


Asunto(s)
Enfermedad de Alzheimer , Cuidadores , Internet , Anciano , Femenino , Humanos , Enfermedad de Alzheimer/terapia , Carga del Cuidador , Comunicación , Masculino
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