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1.
BMC Nurs ; 23(1): 534, 2024 Aug 06.
Artículo en Inglés | MEDLINE | ID: mdl-39103791

RESUMEN

BACKGROUND: Effective response and reducing the burden of family care for children with cancer is critical, and China currently lacks a specific assessment tool. AIMS: This study aimed to translate and validate the Caregiving Burden Scale for Family Caregivers of Children with Cancer (CBSFC-CC) and then test and implement the tool. METHODS: According to the Beaton cross-cultural debugging guide, preliminary Chinese version of CBSFC-CC scale was formed, which was suitable for Chinese language environment and clinical context. Exploratory factor analyses (EFA) and confirmatory factor analyses (CFA) were performed to verify structural validity. Convergent validity, discriminant validity and reliability were also conducted. RESULTS: A total of 529 family caregivers of children with cancer participated in the survey. EFA extracts and combines four factors and explained 65.80% of the total variation. CFA proved that all the goodness-of-fit indicators were acceptable. The Cronbach's alpha of the Chinese version of CBSFC-CC was .96, and the test-retest reliability coefficient was .95. Four dimensions and 29 items were identified in the final Chinese version of CBSFC-CC. CONCLUSION: The chinese version CBSFC-CC is scientifically reasonable and has good reliability and validity, which can be applied to the investigation of the nursing burden of family caregivers of children with cancer in China.

2.
J Relig Health ; 2024 Aug 05.
Artículo en Inglés | MEDLINE | ID: mdl-39103591

RESUMEN

Most children with a rare disease are cared for by their family members but parenting such a child is extremely demanding due to the complexity and severity of symptoms, with serious physical, emotional, social, and financial consequences for caregivers. Although religion may serve as a positive coping strategy, little is known about its role in helping caregivers manage the stress related to the burden of caregiving in Poland. Therefore, we surveyed 925 Polish family caregivers of children with rare diseases to understand the association between caregivers' religiosity and their caring experiences. The findings suggest that parents' religiosity is associated with a more positive caregiving experience, perceived quality of life, and experienced caregiving burden. While religious caregivers reported experiencing less distressing emotions and stressed the encouraging impact of their child's disease on their life more often, non-religious caregivers experienced role captivity and role overload more frequently. Since religion may serve as a source of strength and a protecting factor against mental health problems and the burden of caregiving, healthcare professionals should be aware of the importance of religious and spiritual care, and caregivers' religiosity should be considered an integral part of a holistic approach.

3.
Neuropsychopharmacol Hung ; 26(2): 86-93, 2024 06.
Artículo en Inglés | MEDLINE | ID: mdl-38994857

RESUMEN

BACKGROUND AND OBJECTIVE: Care for family members is a significant characteristic of families in South Asia. A family is one unit, and every other member is emotionally connected and expected to take care of each other. However, the provision of care to a family member with mental illness can be physically as well as emotionally exhausting and distressing for the Family Caregiver. The present study aimed to investigate the caregiving burden in family caregivers of depression and schizophrenia. METHOD: For this cross-sectional research, a purposive sample of 80 Family caregivers taking care of at least one family member with mental health problems of depression (n=40) and schizophrenia (n=40) were recruited for the present study. The age range of the sample was 15 to 60 years. All the respondents were literates who could read and write in Urdu. The scale used to measure the caregiving burden was Zarit Caregiving Burden Scale. The data was collected from the male (n=22) and female (n=58) family caregivers. To access data, family caregivers were approached at the psychological services clinics of Rawalpindi and Islamabad in private and public sector hospitals. RESULTS: The data were analyzed through descriptive and t-test analysis. Analyses of the data revealed that family caregivers of schizophrenia had a greater caregiving burden as compared to family caregivers of depression. Results also showed that females reported a higher caregiving burden as compared to male family caregivers. CONCLUSION: Family caregivers of schizophrenia undergo the severe burden of care and distress, and they may be considered a high-risk group for the development of mental health problems. Comprehensive intervention programs may be developed to involve them and safeguard their mental health.


Asunto(s)
Carga del Cuidador , Cuidadores , Depresión , Esquizofrenia , Humanos , Masculino , Femenino , Adulto , Persona de Mediana Edad , Esquizofrenia/enfermería , Esquizofrenia/terapia , Pakistán/epidemiología , Cuidadores/psicología , Estudios Transversales , Depresión/epidemiología , Depresión/psicología , Adolescente , Adulto Joven , Carga del Cuidador/psicología , Familia/psicología , Costo de Enfermedad , Encuestas y Cuestionarios , Estrés Psicológico/etiología , Estrés Psicológico/epidemiología , Estrés Psicológico/psicología
4.
Risk Manag Healthc Policy ; 17: 1151-1163, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38737420

RESUMEN

Purpose: This study aimed to find the caregiving burden level for patients with dementia who had multiple chronic diseases by simultaneously considering both patient and caregiver factors. Participants and Methods: A cross-sectional study with 284 patients with dementia having multiple chronic diseases managed by the dementia collaborative care team at Changhua Christian Hospital in Taiwan was conducted. The input variables were from patients, such as age, gender, mood symptoms, and behavioral and psychological symptoms, and caregivers, including age, relation to the patient, caregiver's mood, and caregiving burden. The Apriori algorithm was employed to determine the association between patient and caregiver factors and different caregiving burden levels by setting up the minimum support of 1% and confidence of 90% along with lift >1. Results: When caring for patients with dementia, twenty scenarios were found for caregivers with a severe burden. In addition, 1936 scenarios were related to caregivers with a moderate-to-severe burden. Specifically, there were eight scenarios for patients with three chronic diseases which could be further categorized into five general rules. Two hundred and fifty scenarios belonging to patients with two chronic diseases could be classified into 16 different combinations from eight chronic diseases of the database. Conclusion: Caregiver's mood, patients with mild dementia, and patients aged 75-84 years were associated with a severe caregiving burden. College and above education of the caregiver, the patient aged 85 years or more, and at least one of caregiver's moods were the variables to result in a moderate-to-severe burden for caregivers caring for patients with three multiple chronic diseases. Moreover, college and above education of the caregiver, mood symptom, age of the caregiver, and age of the patient were important variables for caregivers who had a moderate-to-severe burden taking care of patients with two chronic diseases.

5.
J Clin Nurs ; 2024 Apr 08.
Artículo en Inglés | MEDLINE | ID: mdl-38590040

RESUMEN

AIMS: Based on the two-factor model of caregiving appraisals, this study aims to (1) investigate the relationships between competence in dementia care and job satisfaction (work attitudes in positive aspect) and turnover intention (work attitudes in negative aspect) among formal caregivers in nursing homes, and (2) examine the mediating roles of positive aspects of caregiving (caregiving appraisals in positive aspect) and caregiving burden (caregiving appraisals in negative aspect) in the above associations. DESIGN: A cross-sectional design was used. Structural equation modelling was employed to test the proposed model. STROBE checklist guides the reporting of this study. METHODS: Using the multistage cluster sampling method, 407 formal caregivers were selected from 43 nursing homes across 7 districts/counties in China. RESULTS: The proposed model shows a good model fit. Competence in dementia care shows significant positive associations with increased job satisfaction and decreased turnover intention among formal caregivers in nursing homes. Caregiving burden and positive aspects of caregiving mediate the relationships between competence in dementia care and both job satisfaction and turnover intention. Furthermore, the relationship between positive aspects of caregiving and job satisfaction is stronger than that with turnover intention, but the relationship between caregiving burden and turnover intention is not stronger than that with job satisfaction. CONCLUSIONS: The results demonstrate that the two-factor model of caregiving appraisals effectively elucidates the associations and underlying mechanisms between competence in dementia care and formal caregivers' work attitudes. Specifically, two crucial conclusions are drawn: (1) competence in dementia care is associated with higher levels of job satisfaction and lower levels of turnover intention among formal caregivers in nursing homes; (2) caregiving burden and positive aspects of caregiving serve as parallel mediators in these associations. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Policymakers and nursing homes managers should implement a series of measures aimed at formal caregivers in nursing home. Specifically, allocating more resources to enhance the competence in dementia care of formal caregivers is crucial, given its significant association with elevated job satisfaction and reduced turnover intention. Besides, positive and negative caregiving appraisals emerge as proximal factors influencing work attitudes of formal caregivers. Therefore, intervention projects focused on formal caregivers in nursing home should target enhancing positive experiences and alleviating caregiving burden. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

6.
Support Care Cancer ; 32(5): 296, 2024 Apr 18.
Artículo en Inglés | MEDLINE | ID: mdl-38635060

RESUMEN

PURPOSE: This study aimed to examine the effect of dependent care theory-based post-surgical home care intervention on self-care, symptoms, and caregiver burden in primary brain tumor patients and their caregivers. METHODS: A parallel-group randomized controlled trial was conducted with patients who underwent surgery for a primary brain tumor between March 2019 and January 2020 in a tertiary hospital and with caregivers who cared for them at home. Eligible patients and caregivers were determined by block randomization. Outcome measures included validated measures of self-care agency (Self-Care Agency Scale), symptoms and interference by symptoms (MD Anderson Symptom Inventory Brain Tumor-Turkish Form), and caregiver burden (Caregiver Burden Scale). Two-way analysis of variance was used in repeated measurements from general linear models compared to scale scores. RESULTS: Self-care agency was significantly higher in the intervention group than in the control group in the first and sixth months after surgery (p < 0.05). The severity of the patients' emotional, focal neurologic, and cognitive symptoms and interference by symptoms were significantly lower in the intervention group than in the control group (p < 0.05). Caregiver burden was significantly lower in the intervention group in the first, third, and sixth months after surgery (p < 0.05). CONCLUSION: Dependent care theory-based post-surgical home care intervention increased patients' self-care and reduced symptoms and their effects. It also reduced the caregiver burden. Dependent care theory can guide the nursing practices of nurses who provide institutional and/or home care services to patients with chronic diseases and their caregivers. TRIAL REGISTRATION: NCT05328739 on April 14, 2022 (retrospectively registered).


Asunto(s)
Neoplasias Encefálicas , Servicios de Atención de Salud a Domicilio , Humanos , Cuidadores , Carga del Cuidador , Autocuidado
7.
Occup Ther Health Care ; 38(3): 619-635, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38504580

RESUMEN

This study investigated the caregiving burden, quality of life and life satisfaction of caregivers of individuals with stroke during the pandemic period. A descriptive a study was performed with a sample of caregivers (n = 80) of inpatient individuals with stroke in Kayseri, Turkey. The Bakas Caregiving Outcomes Scale, Short Form Health Survey-36, and Temporal Satisfaction with Life Scale were used as well as some open-ended questions. Using descriptive analysis and correlations, results showed that caregiving burden of the participants was correlated to quality of life and life satisfaction during the COVID-19 (p < 0.05). Specific types of burden include: stress, isolation, financial issues, disruption of therapy, patient-caregiver relationship, and kinship relations. These findings provide important information about the increased burden of caregivers during the pandemic. This study offers information to design a framework of interventions to reduce the physical, social, and psychological effects on caregivers in similar conditions.


Asunto(s)
COVID-19 , Carga del Cuidador , Cuidadores , Calidad de Vida , Accidente Cerebrovascular , Humanos , Turquía , Estudios Transversales , Masculino , Femenino , Persona de Mediana Edad , Cuidadores/psicología , Accidente Cerebrovascular/psicología , Adulto , Anciano , SARS-CoV-2 , Estrés Psicológico , Satisfacción Personal , Costo de Enfermedad , Pandemias
8.
Qual Life Res ; 33(5): 1297-1305, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38381280

RESUMEN

PURPOSE: Child health-related quality of life (HRQOL) has been shown to improve after epilepsy surgery and is linked to parent HRQOL. We postulated that the HRQOL of parents whose children underwent epilepsy surgery would improve over two years compared to those treated with medical therapy. The aim of the study was to evaluate the trajectory of HRQOL of parents whose children received treatment with epilepsy surgery or medical therapy over two years. METHODS: This multi-center study recruited parents whose children were evaluated for epilepsy surgery. Parents completed measures of care-related QOL (CarerQOL) at the time of their children's surgical evaluation, 6 months, 1 year, and 2 years later. Additional measures included parent anxiety and depression, satisfaction with family relationships, family resources and demands, and child clinical variables. A linear mixed model was used to compare the trajectories of parent HRQOL of surgical and medical patients, adjusting for baseline clinical, parent, and family characteristics. RESULTS: There were 111 children treated with surgery and 154 with medical therapy. The trajectory of parent HRQOL was similar among parents of surgical and medical patients over the two-year follow-up. However, HRQOL of parents of surgical patients was 3.0 points higher (95%CI - 0.1, 6.1) across the follow-up period compared to parents of medical patients. Parents of seizure-free children reported 2.3 points (95%CI 0.2, 4.4) higher HRQOL relative to parents of non-seizure-free children across the two-year follow-up. CONCLUSION: Parent HRQOL did not improve after their children were treated with epilepsy surgery, possibly related to ongoing comorbidities in children.


Asunto(s)
Epilepsia , Padres , Calidad de Vida , Humanos , Calidad de Vida/psicología , Femenino , Masculino , Epilepsia/psicología , Epilepsia/cirugía , Padres/psicología , Niño , Preescolar , Adolescente , Adulto , Encuestas y Cuestionarios , Anticonvulsivantes/uso terapéutico
9.
J Adv Nurs ; 80(9): 3679-3691, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-38380758

RESUMEN

AIMS: The objective of this study was to examine the relationship between caregiving burden and pre-death grief, with a specific focus on adult-child caregivers in mainland China. Additionally, the study explored whether coping strategies played a mediating role in this correlation. METHODS: A convenience sample of 320 adult-child caregivers of older parents with dementia from Kunming, mainland China, was recruited for the study. Data were collected using the Chinese version of the Marwit-Meuser Caregiver Grief Inventory-Short Form, the Burden Scale for Family Caregivers, and the Ways of Coping Checklist-Revised. RESULTS: Results using linear regression and multiple mediation analysis with Hayes' process model indicated that caregiving burden was positively related to pre-death grief and that active coping mediated the relationship between them. In the female group, active coping partially mediated the association between caregiving burden and pre-death grief, but in the male group, this mediating effect did not exist. CONCLUSION: The study found evidence supporting the link between caregiving burden and pre-death grief among adult-child caregivers of older parents with dementia in mainland China. Furthermore, the caregiving burden prevented the use of active coping, and this decrease in coping increased the perception of pre-death grief. These associations only existed in the female group. IMPLICATIONS: This paper presented the importance of active coping skills in the dementia caregiving process. IMPACT: The findings of this study emphasize the necessity for health practitioners to provide targeted interventions regarding pre-death grief among dementia caregivers and strengthen caregivers' active coping strategies to reduce their pre-death grief. Community-based and personal care support services should be promoted to alleviate their caregiving burden. REPORTING METHOD: We have adhered to the transparent reporting of evaluations with quantitative design statements and the corresponding checklist was followed. PATIENT OR PUBLIC CONTRIBUTION: 'No patient or public involvement'.


Asunto(s)
Cuidadores , Habilidades de Afrontamiento , Demencia , Pesar , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Hijos Adultos/psicología , Carga del Cuidador/psicología , Cuidadores/psicología , China , Demencia/psicología , Demencia/enfermería , Encuestas y Cuestionarios
10.
Geriatr Nurs ; 56: 173-183, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38354660

RESUMEN

We investigated if caregiving intensity and duration affected cardiovascular disease (CVD) risks and diagnosis and whether the relationship differed by race and ethnicity in family caregivers (FCGs) of persons with dementia. We conducted a secondary analysis of the 2015-2020 CDC Behavioral Risk Factor Surveillance System data using a logistic regression analysis. A total of 6132 dementia FCGs were included. We found that the more time FCGs spent providing care per week (intensity) or over time (duration), the more likely they reported CVD risks and diagnosis. However, the associations between caregiving intensity and CVD risks and diagnosis did not differ by race and ethnicity, nor did the associations between caregiving duration and the outcomes. These findings suggest future studies should be conducted to develop preventive strategies for FCGs' cardiovascular health. Further work is needed to identify the impact of race and ethnicity on the relationship between caregiving conditions and CVD with larger samples of racial and ethnic minorities.


Asunto(s)
Enfermedades Cardiovasculares , Demencia , Humanos , Etnicidad , Cuidadores
11.
J Pain Symptom Manage ; 67(5): e403-e408, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38403021

RESUMEN

CONTEXT: The goal of palliative care (PC) is to improve the quality of life (QoL) of patients with life-limiting illnesses as well as their families. Ideally, PC is integrated early in the course of life-limiting illnesses. Less attention has been paid to the need for early PC for family caregivers (FCs) in lower-income settings. OBJECTIVES: This observational cross-sectional study was conducted to explore the burden experienced by FCs of newly diagnosed incurable cancer patients in Egypt and characterize its relation to depression and QoL. METHODS: Ninety-five adult FCs of adult patients with newly diagnosed incurable cancer completed the 22-item Zarit Burden Interview (ZBI-22), Patient Health Questionnaire (PHQ-9), and Short Form 12 (SF-12) to assess caregiving burden, depression, and QoL among FCs, respectively. RESULTS: The median (IQR) ZBI-22 score was 17(11-24) and 34% of FCs had significant burden (ZBI-22 score > 20). Assistance with late loss activities of daily living and availability for longer caregiving duration were associated significantly with higher caregiving burdens (P = 0.004 and 0.047, respectively). FCs with significant burden had significantly higher PHQ-9 scores (P = 0.0003). There was a significant negative correlation between ZBI-22 scores and the bodily pain, general health, mental health, physical function, role emotional, and social function subscales/items of SF-12. CONCLUSIONS: A substantial proportion of Egyptian FCs of incurable cancer patients experience significant burden early in the course of the disease. This burden is associated with depressive symptoms and worse QoL dimensions, physical, psychological, and social. In a lower-income setting, early PC interventions for FCs of incurable cancer patients are needed.


Asunto(s)
Neoplasias , Calidad de Vida , Adulto , Humanos , Actividades Cotidianas , Cuidadores/psicología , Depresión/epidemiología , Depresión/psicología , Egipto/epidemiología , Neoplasias/terapia , Calidad de Vida/psicología , Encuestas y Cuestionarios , Estudios Transversales
12.
Epilepsy Behav ; 153: 109685, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38368790

RESUMEN

OBJECTIVE: The aim of this study was to evaluate caregiver burden and factors associated with caregiver burden in caregivers of adults with epilepsy. MATERIALS AND METHODS: This descriptive cross-sectional study was conducted with 107 patients with epilepsy and 107 their primary caregivers. Personal information form including sociodemographic data and Zarit Caregiver Burden Inventory (ZBI), were used for caregivers, and patient information form, Montreal Cognitive Assessment Scale (MoCA), Hospital Anxiety and Depression Scale (HADS), Epilepsy Quality of Life Scale (QoLIE-31) and Stigma Scale were used for patients. RESULTS: Caregiver burden was found to be related to gender (p = 0.047), marital status (p = 0.008), income (p = 0.003), education level (p = 0.05) age at onset of epilepsy (p = 0.025) and type of therapy (p = 0.005). The scale scores for cognitive functions (p < 0.001), stigma (p < 0.001), anxiety (p = 0.001), depression (p = 0.005), and quality of life (p < 0.001) of the patient showed significant correlations with caregiver burden. In addition, caregiver burden was found to correlate with some caregiver characteristics such as caregivers' age (p = 0.041), gender (p < 0.001), education (p < 0.001), income (p = 0.001) and relationship with the patient (p = 0.016). Time spent on caregiving per day was also positively correlated with caregiving burden (p < 0.001). In regression analysis, the gender of the caregiver, the gender of the patient, the stigma level of patient, and the type of treatment were found to be predictors of care burden (p < 0.05, R2 = 0.61). CONCLUSION: It was found that two-thirds of the families of patients with epilepsy experienced varying degrees of caregiver burden. In addition, it was determined that caregiver burden was associated with sociodemographic and numerous psychosocial factors of the patient as well as the caregiver. It is important that both the caregiver and the patient being cared for are closely evaluated in interventions to reduce the caregiver burden in patients with epilepsy.


Asunto(s)
Epilepsia , Calidad de Vida , Adulto , Humanos , Calidad de Vida/psicología , Carga del Cuidador , Costo de Enfermedad , Estudios Transversales , Cuidadores/psicología , Depresión/psicología
13.
Eur J Paediatr Neurol ; 48: 78-84, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-38071849

RESUMEN

BACKGROUND: We sought to assesses the impact of caring for children with ultra rare diseases (URDs) on family carers and to analyse the way these experiences differ among the caregivers of children diagnosed through prenatal or newborn screening, and those with symptom-based diagnosis. METHODS: A total of 200 caregivers of 219 URDs children completed an on-line survey regarding the challenges and experiences of caregivers of URDs children. RESULTS: The majority of URD caregivers felt burdened by their children's health problems, emotional and behavioural changes. 46.5% reported feelings of care overload, 43% coped poorly with the stress, and many experienced a variety of feelings of distress towards the role of caregiver. While most caregivers struggled with the diagnostic odyssey and were dissatisfied with the healthcare services for URD children, caregivers of children diagnosed through prenatal or newborn screening were significantly less burdened than the parents of children with symptom-based diagnoses. CONCLUSION: Although caregivers of URDs children experience physical and emotional strain, they are often neglected by the healthcare system. A bio-psychosocial approach to URDs should therefore also include family caregivers' physical and psychosocial needs. Apart from financial and emotional support, enhancing access to genetic testing and newborn screening should be prioritised.


Asunto(s)
Padres , Enfermedades Raras , Niño , Recién Nacido , Humanos , Enfermedades Raras/diagnóstico , Cuidadores/psicología , Encuestas y Cuestionarios , Emociones
14.
Trials ; 24(1): 791, 2023 Dec 05.
Artículo en Inglés | MEDLINE | ID: mdl-38053147

RESUMEN

BACKGROUND: Family caregiver interventions are essential to support dementia caregiving. However, such interventions are typically complex and consist of multiple components. Existing evidence rarely delineates the effectiveness and interactions between individual components. To optimise intervention, we adopt the multiphase optimisation strategy (MOST) to test the implementation fidelity and determine the effect of each component and the interactions between each component and the corresponding outcome. METHODS: A prospective, assessor-blinded, randomised clinical trial with fractional factorial design using the MOST principle. Two hundred fifty family dementia caregivers will be randomised to one of 16 experimental conditions in a fractional factorial design involving six intervention components: (1) dementia and caregiving education; (2) self-care skills; (3) behavioural symptom management; (4) behavioural activation; (5) modified mindfulness-based cognitive therapy; and (6) support group. The first one is the core component, and the five remaining will be examined. Physical health, caregiver burden, stress, psychological well-being, anxiety and depressive symptoms, and social support will be assessed over the 12-month study period. Following the intention-to-treat principle, linear mixed models and regression analyses will be used to examine the specific effect of the five components and their two-way interactions to propose the most effective combination. DISCUSSION: This is the first study adopting the multiphase optimisation strategy to identify the most active and engaging components of a psychological intervention for caregivers of patients with dementia. In view that dementia caregiver interventions are increasingly diversified and complex, such knowledge is important to maximise the intervention efficacy and allow the intervention to be implemented within an efficient timeframe and dosage. The optimisation of caregiver support interventions is critical to enhance the health outcomes of caregivers and care recipients, thereby, delaying possible institutionalisation and reducing the costs of long-term dementia care. TRIAL REGISTRATION: This study was retrospectively registered in the WHO Primary Registry - Chinese Clinical Trials Registry (ChiCTR2300071235). (Protocol date 30/10/2020; version identifier 2020-2021-0045). Registered on 9 May, 2023. REPORTING METHOD: SPIRIT guideline was followed. PATIENT OR PUBLIC CONTRIBUTION: No patient or public involvement.


Asunto(s)
Cuidadores , Demencia , Humanos , Cuidadores/psicología , Estudios Prospectivos , Apoyo Social , Grupos de Autoayuda , Demencia/diagnóstico , Demencia/terapia , Demencia/psicología , Calidad de Vida , Ensayos Clínicos Controlados Aleatorios como Asunto
15.
Int J Palliat Nurs ; 29(11): 518-526, 2023 Nov 02.
Artículo en Inglés | MEDLINE | ID: mdl-38039127

RESUMEN

BACKGROUND: People in Thailand receiving palliative care at home can have complex needs and this means that the family caregiver can have a high burden of care. AIM: To assess the impact of a nursing care activities for a home-based palliative care programme (NHBPC) on the care burden among family caregivers and the care quality in older people at the palliative care stage. METHODS: This quasi-experimental repeated measure study was used to investigate the effects of the nursing care activities for a NHBPC programme. RESULTS: The mean caregiving burden and care quality scores in the experimental and control groups at post-test and 2-weeks follow-up showed significant differences (p<.05). In addition, improvement was not seen in the control group. CONCLUSION: The NHBPC programme significantly improved caregiving burden and quality of care in Thai older people and their family caregiver. This confirms that the NHBPC programme plays a crucial role in helping them to improve quality of life.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Humanos , Anciano , Cuidadores , Calidad de Vida , Tailandia
16.
Disabil Rehabil ; : 1-9, 2023 Nov 06.
Artículo en Inglés | MEDLINE | ID: mdl-37933167

RESUMEN

PURPOSE: This scoping review was conducted to synthesize existing literature into a map of the common needs of families caring for patients with traumatic brain injury (TBI) at home. MATERIALS AND METHODS: A systematic search of studies published between January 2012 and December 2022 was conducted across databases. The selected studies reported the needs or unmet needs of patients with TBI and/or their family caregivers (FCs). RESULTS: A total of 12 publications were identified. The results suggest that the common needs of families caring for patients with TBI at home include: information about TBI as a disease; information about the continuum of TBI healthcare services; information about adaptive technologies; education and skilling of FCs; psychological support and counseling; physical and occupational therapy services; follow-up care and transitional care management; respite care; peer support; financial assistance, advocacy, and legal services; emotional support from the family and community; and assistance with physical patient care and instrumental activities of daily living. CONCLUSION: The mapped needs provide insight into supportive interventions required to enhance the health outcomes of patients with TBI and their families during and after rehabilitation. The needs also highlight directions for research and healthcare services for patients with TBI.


The families caring for patients with traumatic brain injury at home end up living in situations characterized by multiple unmet needs, and these can be a source of poor health outcomes for the family and patients with traumatic brain injury.The identified needs of families caring for patients with traumatic brain injury reveal gaps in the discharge planning and care coordination after acute and rehabilitation care.Addressing these needs requires a multidisciplinary approach and planning.Interventions using a holistic approach to address the identified needs may significantly improve the health outcomes of patients with traumatic brain injury and their families.

17.
Palliat Support Care ; : 1-9, 2023 Nov 24.
Artículo en Inglés | MEDLINE | ID: mdl-37997433

RESUMEN

OBJECTIVES: Since the onset of COVID-19 pandemic, additional risk factors affecting family caregivers' mental health have arisen. Therefore, personal stress coping strategies and family dynamics became important factors in reducing the impact of the pandemic on family caregivers' mental health. The present research aimed to estimate the association between COVID-19 stressors and family caregiving burden. Moreover, moderating effects of emotion dysregulation and family functioning on this association were investigated. METHODS: This study analyzed data collected in April 2021 from 154 family caregivers (Mage = 38.79, SDage = 9.36, range = 22-64) recruited through Amazon's Mechanical Turk (MTurk). The impact of COVID-19 stressors on family caregiving burden was tested, and moderating impacts of emotion dysregulation and family functioning were also investigated. RESULTS: Both COVID-19 stress exposure and stress appraisal were positively associated with family caregiving burden. Emotion dysregulation and problematic family functioning were also positively associated with family caregiving burden. A significant moderating effect of emotion dysregulation was found, such that family caregivers with higher emotion dysregulation were likely to feel more caregiving burden when they experienced more COVID-19 stressors. SIGNIFICANCE OF RESULTS: The current research highlighted the role of emotion regulation in reducing the negative impact of COVID-19 stressors on family caregiving burden. The research also emphasizes the need for intervention programs to improve emotion regulation strategies to decrease family caregiving burden during the pandemic.

18.
Cureus ; 15(10): e46537, 2023 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-37927752

RESUMEN

Background Many Americans are informal caregivers providing unpaid care for their loved ones living with chronic conditions, such as dementia and heart failure. As the US population continues to age and live longer with more complex chronic conditions, informal caregivers play an increasingly important role in the care of older adults with functional impairment and multiple comorbidities. Caregivers face many challenges in managing the health of themselves and their loved ones, including physical, emotional, and financial burdens, which may potentially vary by race and ethnicity. Therefore, it is critical to develop culturally tailored solutions, such as smart technology, aimed at improving the quality of life of informal caregivers and care recipients from diverse backgrounds. Methods Data were collected from a convenient sample of 69 informal caregivers in Texas who were members or volunteers for either the International Buddhist Progress Society-Dallas (IBPS Dallas) or University of Texas Medical Branch (UTMB). Caregivers answered questions about their caregiving experiences, including the type of care they provided, challenges they faced, and lessons learned. Responses were stratified by race/ethnicity (White, Hispanic, or Asian American) to assess for potential cultural differences in caregiving experiences. A chi-squared test and one-way analysis of variance (ANOVA) were conducted. Results White, Hispanic, and Asian American caregivers all reported high non-medical related needs. White, Hispanic, and Asian American care recipients all had a high degree of neurological disease and functional impairment. White and Hispanic caregivers were also more likely to offer emotional support (p=0.007) and financial support (p=0.025) than Asian American caregivers. Asian American caregivers reported greater worry about the health-related knowledge of their family members (p=0.040) than White and Hispanic caregivers. Hispanic (18.8%) and Asian American caregivers (12.5%) reported the least knowledge of caregiving-related government policies than White caregivers (43.2%) (p=0.025). Hispanic (18.8%) and Asian American caregivers (18.8%) also reported the least knowledge of available support programs and services for care recipients (p=0.001). Conclusions White, Hispanic, and Asian American informal caregivers vary in their types of worries, care provided, and challenges faced. Our study found that Asian American caregivers reported greater worry about the health-related knowledge of their family members than White and Hispanic caregivers. White caregivers were better at navigating government resources and caregiver support programs than Hispanic and Asian American caregivers. While race and ethnicity are potential factors for these observed differences, several other factors may have played a role, including age, gender, income, education, patient diagnosis, and disease severity. Future research should consider these factors and evaluate a larger and more diverse sample for more definitive racial and ethnic comparisons. Understanding disparities in caregiving experiences is a critical initial step to developing culturally appropriate interventions to reduce caregiving burden and promote the health and well-being of both patients and their informal caregivers from diverse backgrounds.

19.
Epilepsy Behav ; 147: 109411, 2023 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-37672823

RESUMEN

STUDY AIM: To estimate the prevalence of high caregiving burden and depressive symptoms among caregivers (CG) of patients with epilepsy (PWEs) in Hong Kong and identify risk and protective factors for both outcomes after the Model of Stress and Carer Burden (MSCB). METHODS: This cross-sectional study recruited participants from local epilepsy clinics to complete a 15-minute survey on a tablet. Caregiving burden (CB) was assessed using the 4-item Zarit Caregiver Burden Interview. Depressive symptoms were assessed using the 2-item Patient Health Questionnaire. Family functioning was assessed using the Short-Form Family Assessment Device General Functioning Subscale. Sociodemographic data of the caregivers and clinical data of the PWE they cared for were described. Hierarchical logistic regression models were used to analyze the factors associated with the outcomes. RESULTS: A hundred and fifty-one CGs of PWEs were recruited for this study. The prevalence of high caregiving burden (ZBI-4 > 7) for CGs of PWEs was 58.9% (n = 89), whereas the prevalence of high depressive symptoms (PHQ2 > 2) was 23.8% (n = 36). Hierarchical logistic regression analysis revealed that entering patient characteristics and care situations did not enhance the model's predictability. In the full model, a high perceived CB was a risk factor for elevated depressive symptoms. Good physical health protects against depressive symptoms. CONCLUSIONS: Among caregivers of PWE in Hong Kong, a high perceived caregiving burden was a risk factor for elevated depressive symptoms; however, the clinical characteristics of the PWEs were not. Self-reported physical health is a protective factor against increased depressive symptoms.

20.
Children (Basel) ; 10(9)2023 Aug 31.
Artículo en Inglés | MEDLINE | ID: mdl-37761448

RESUMEN

BACKGROUND: The purpose of the present research was to evaluate the quality of life of patients with atopic dermatitis (AD), and that of their mothers. We compared the anxiety and depression scores and caregiving burden of mothers of patients with AD with the same scores of mothers of healthy children. MATERIALS AND METHODS: A total of 153 patients between the ages of 2 months and 16 years with AD in our clinic, and their mothers, were contained in the patient group. An additional 141 healthy cases between the ages of 2 months and 16 years, and their mothers, were included as the control group. The Children's Dermatology Life Quality Index (CDLQI) was completed according to the children's opinions, and the Infant's Dermatitis Quality of Life Index (IDLQI), Family Dermatology Life Quality Index (FDLQI), Beck Depression Inventory (BDI), Beck Anxiety Inventory (BAI), Temperament Evaluation of Memphis, Pisa, Paris and San Diego Autoquestionnaire, and Zarit Caregiver Burden (ZCB) scale were completed based on the mothers' opinions. RESULTS: We detected a positive relationship between the SCORAD index and the IDLQI, CDLQI, and FDLQI scores of children with AD. We found that anxiety, depression, and caregiving burden in mothers of AD cases increased when mothers of AD cases were compared with mothers of healthy children (p < 0.0001, p < 0.0001, and p < 0.002, respectively). Also, based on the mothers' responses, we noted a positive correlation among the BDI, BAI, ZCB, and SCORAD index scores. CONCLUSIONS: Our study found that the quality of life of patients with AD, and that of their mothers, was negatively affected by the disease. We also found that anxiety, depression levels (not at the clinical diagnosis level, and the caregiving burden in mothers of AD cases increased when mothers of AD cases were compared with mothers of healthy children.

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