Health, Work, and Social Problems in Spanish Informal Caregivers: Does Gender Matter? (The CUIDAR-SE Study).
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SUBMITTER: Pena-Longobardo LM
PROVIDER: S-EPMC8306791 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:(1) Background: This study investigated how potential shifts in patients’ formal and informal care utilization during the COVID-19 pandemic impacted their informal caregivers in terms of their subjective burden, psychological wellbeing, and happiness. (2) Methods: A retrospective cohort study design was employed for a panel of Dutch informal caregivers of persons with mental health problems (n = 219) in June 2020. Descriptive statistics and differences between means were determined for the patients’ informal and care utilization and informal caregivers’ subjective burden, happiness, and psychological wellbeing. Three mediation analyses were conducted using the PROCESS macro. (3) Results: Informal caregivers reported significantly worse happiness and subjective burden scores during the COVID-19 pandemic compared with before the lockdown. There were minimal shifts in patient’s care utilization reported, with the exception of a decrease in significant emotional and practical support provided by the informal caregiver. In the mediation analyses, there was not a significant indirect effect of shifts in patients’ formal care utilization on informal caregivers’ subjective burden, psychological wellbeing, and happiness through shifts in patients’ informal care utilization. (4) Discussion and conclusion: Whilst we found that shifts in patients’ care utilization during the first wave of the pandemic did not affect the informal caregiver in the short term, it is unclear what the long-term impact of the pandemic might be on informal caregivers. More research should be conducted to understand the implications of short- and long-term impact of substitution on informal caregivers of persons with mental health problems, with special consideration of the COVID-19 context and uptake of e-health technology.
| S-EPMC9778175 | biostudies-literature
Project description:BackgroundSocial support is a key component in maintaining cancer caregiver well-being, and many resources exist to facilitate caregivers' use of social support (eg, cancer support groups). This study sought to determine how informal cancer caregivers use social resources over the course of caregiving.MethodsThe data are from the Comprehensive Health Enhancement Support System study of informal caregivers (n = 202) of patients with recently diagnosed lung cancer. Caregivers self-reported their sociodemographic and caregiving characteristics and social resource use over 6 months. Generalized additive models were used to assess social resource use over time, and generalized estimating equation logistic regression models were used to assess the correlates of social resource use.ResultsNearly two-thirds of caregivers reported any social resource use. The most prevalent social resources were faith-based groups (38%) and social clubs (30%). Only 1 in 4 caregivers participated in a formal resource such as counseling (11%) or a cancer support group (6%). Social resource use was lowest immediately after the diagnosis and increased over time. Formal resource use exhibited a nonlinear association with time such that formal resource use peaked approximately 9 to 10 months after the cancer diagnosis. Caregivers were more likely to report social resource use if the patient also reported social engagement.ConclusionsThis study has found that many cancer caregivers do not use social resources, although social resource use increases over time after the cancer diagnosis. Because of the association between social engagement and well-being, this information may inform future research and interventions to improve outcomes for cancer caregivers and their families.
| S-EPMC6952577 | biostudies-literature
Project description:BackgroundDravet syndrome (DS) is a rare developmental and epileptic encephalopathy that presents with frequent and prolonged seizures resistant to treatment as well as cognitive problems such as behavioral and developmental delays. However, there is a lack of scientific literature on the impact of this condition on caregivers and the family unit.ObjectivesTo find out the social and emotional impact of DS on the family unit, to provide a comprehensive understanding of the disease's effects on both the family and caregivers.Materials and methodsA tailored online survey was administered to Spanish DS families, collecting data on the employment, financial, emotional, and social status of patients and caregivers.ResultsA total of 112 Spanish caregivers participated in the study. The mean age of the 112 parents was 46.61 years, and 77.68 % of them were mothers. The majority of caregivers had to quit their jobs or reduce their working hours to take care of their child with DS, being the most of them mothers. Most of the caregivers felt that they were not well-informed by healthcare professionals (HCPs) and the Spanish National Health System (NHS). Despite access to resources, families often face financial strain and challenges in obtaining sufficient support, highlighting the need for enhanced social, economic, and psychological backing. In addition, both sentimental and social relationships were negatively impacted in the vast majority of respondents.ConclusionsThe study advocates for policy reforms, integrated social services, community programs, and multidisciplinary efforts to improve the quality of life and social integration for those affected by DS.
| S-EPMC11324968 | biostudies-literature
Project description:Along with the burden commonly experienced by informal caregivers (ICs) of people with dementia (PwD), associated with the progressive decline that accompanies dementia, the lockdown due to the public health crisis has had a great negative impact on the emotional wellbeing, physical health, and social relationships of ICs. Support interventions through telemedicine represent an opportunity for ICs to learn the skills required for the care and maintenance of social networks. In this work, a narrative review of the effects of e-health training and social support interventions was carried out. A literature search was conducted using the ProQuest, Ovid, and Scopus databases. Information regarding social support (SS), psychological interventions, and training for the management of medications and behavioral changes was extracted. One hundred and nine studies were included in this review. Forums and training platforms were the main tools for ICs. The most effective platforms to improve SS include the participation of both ICs and health professionals. However, no significant improvements in objective caring skills were identified. Platforms developed specifically for ICs should be based in tools that ICs are familiar with, because many ICs have not yet incorporated Information and Communication Technologies in many activities of their daily lives. Education in the digitalization to ICs of PwD should be one of the priority objectives in telehealth interventions.
| S-EPMC8345641 | biostudies-literature
Project description:A systematic overview of mental and physical disorders of informal caregivers based on population-based studies with good methodological quality is lacking. Therefore, our aim was to systematically summarize mortality, incidence, and prevalence estimates of chronic diseases in informal caregivers compared to non-caregivers. Following PRISMA recommendations, we searched major healthcare databases (CINAHL, MEDLINE and Web of Science) systematically for relevant studies published in the last 10 years (without language restrictions) (PROSPERO registration number: CRD42020200314). We included only observational cross-sectional and cohort studies with low risk of bias (risk scores 0-2 out of max 8) that reported the prevalence, incidence, odds ratio (OR), hazard ratio (HR), mean- or sum-scores for health-related outcomes in informal caregivers and non-caregivers. For a thorough methodological quality assessment, we used a validated checklist. The synthesis of the results was conducted by grouping outcomes. We included 22 studies, which came predominately from the USA and Europe. Informal caregivers had a significantly lower mortality than non-caregivers. Regarding chronic morbidity outcomes, the results from a large longitudinal German health-insurance evaluation showed increased and statistically significant incidences of severe stress, adjustment disorders, depression, diseases of the spine and pain conditions among informal caregivers compared to non-caregivers. In cross-sectional evaluations, informal caregiving seemed to be associated with a higher occurrence of depression and of anxiety (ranging from 4 to 51% and 2 to 38%, respectively), pain, hypertension, diabetes and reduced quality of life. Results from our systematic review suggest that informal caregiving may be associated with several mental and physical disorders. However, these results need to be interpreted with caution, as the cross-sectional studies cannot determine temporal relationships. The lower mortality rates compared to non-caregivers may be due to a healthy-carer bias in longitudinal observational studies; however, these and other potential benefits of informal caregiving deserve further attention by researchers.
| S-EPMC9141545 | biostudies-literature
Project description:BackgroundDementia is a major public health concern associated with significant caregiver demands and there are technologies available to assist with caregiving. However, there is a paucity of information on caregiver needs and preferences for these technologies, particularly from a sex and gender perspective. To address this gap in research, the objectives of this study are to examine (1) the knowledge of technology, (2) perceived usefulness of technology, (3) feature preferences when installing and using technology and (4) sex and gender influences on technology needs and preferences among family caregivers of persons with dementia (PWD) across North America.MethodsA secondary analysis was conducted on an existing cross-sectional survey with family caregivers of PWDs. Respondents were recruited through the Alzheimer Society of Canada, the Victorian Order of Nurses and Adult Day Programs and other Canadian health care provision institutes. Descriptive statistics, bivariate and multivariate analyses were used to describe the study sample, uncover differences between male and female caregivers and examine sex and gender influences on caregivers' technology needs and preferences.ResultsA total of 381 eligible responses were received over a nine month data collection period. The majority of respondents did not know much about and never used any technologies to assist with caregiving. "Being easy to install", "easy to learn how to use" and "cost" were identified as the most important features when purchasing and setting up technology, while "reliability" was identified as the most important feature when using technology. Most respondents were willing to pay up to $500 to acquire individual technologies. Controlling for other socio-demographic variables, female respondents were more likely to have some or more knowledge about technology for caregiving while male respondents were more willing to pay higher amounts for these technologies compared to their female counterparts.ConclusionsAs one of the first studies of its kind, our findings represent a step towards the incorporation of sex and gender considerations such as cost and reliability in technology design and promotion for caregivers. Future efforts are warranted to establish an in-depth understanding of sex and gender influences in relation to other social and environmental factors.
| S-EPMC7236350 | biostudies-literature
Project description:PurposeCancer threatens the social well-being of patients and their informal caregivers. Social life is even more profoundly affected in advanced diseases, but research on social consequences of advanced cancer is scarce. This study aims to explore social consequences of advanced cancer as experienced by patients and their informal caregivers.MethodsSeven focus groups and seven in-depth semi-structured interviews with patients (n = 18) suffering from advanced cancer and their informal caregivers (n = 15) were conducted. Audiotapes were transcribed verbatim and open coded using a thematic analysis approach.ResultsSocial consequences were categorized in three themes: "social engagement," "social identity," and "social network." Regarding social engagement, patients and informal caregivers said that they strive for normality by continuing their life as prior to the diagnosis, but experienced barriers in doing so. Regarding social identity, patients and informal caregivers reported feelings of social isolation. The social network became more transparent, and the value of social relations had increased since the diagnosis. Many experienced positive and negative shifts in the quantity and quality of their social relations.ConclusionsSocial consequences of advanced cancer are substantial. There appears to be a great risk of social isolation in which responses from social relations play an important role. Empowering patients and informal caregivers to discuss their experienced social consequences is beneficial. Creating awareness among healthcare professionals is essential as they provide social support and anticipate on social problems. Finally, educating social relations regarding the impact of advanced cancer and effective support methods may empower social support systems and reduce feelings of isolation.
| S-EPMC6394690 | biostudies-literature
Project description:BackgroundThere is limited understanding of the contribution made by older people and their caregivers to acute healthcare in the home and how this compares to hospital inpatient healthcare.ObjectivesTo explore the work of older people and caregivers at the time of an acute health event, the interface with professionals in a hospital and hospital at home (HAH) and how their experiences relate to the principles underpinning comprehensive geriatric assessment (CGA).DesignA qualitative interview study within a UK multi-site participant randomised trial of geriatrician-led admission avoidance HAH, compared with hospital inpatient care.MethodsWe conducted semi-structured interviews with 34 older people (15 had received HAH and 19 hospital care) alone or alongside caregivers (29 caregivers; 12 HAH, 17 hospital care), in three sites that recruited participants to a randomised trial, during 2017-2018. We used normalisation process theory to guide our analysis and interpretation of the data.ResultsPatients and caregivers described efforts to understand changes in health, interpret assessments and mitigate a lack of involvement in decisions. Practical work included managing risks, mobilising resources to meet health-related needs, and integrating the acute episode into longer-term strategies. Personal, relational and environmental factors facilitated or challenged adaptive capacity and ability to manage.ConclusionsPatients and caregivers contributed to acute healthcare in both locations, often in parallel to healthcare providers. Our findings highlight an opportunity for CGA-guided services at the interface of acute and chronic condition management to facilitate personal, social and service strategies extending beyond an acute episode of healthcare.
| S-EPMC7444665 | biostudies-literature
Project description:To develop psychometrically sound, culturally relevant, and linguistically equivalent English and Spanish self-report measures of social health guided by a comprehensive conceptual model and applicable across chronic illnesses.The Patient-Reported Outcomes Measurement Information System (PROMIS) Social Health Workgroup implemented a mixed methods approach to evaluate earlier results (v1.0); expand and refine domain definitions and items; translate items into Spanish; and obtain qualitative feedback. Computer-based and paper/pencil questionnaire administration was conducted with a variety of U.S. respondent samples during 2009-2012. Analyses included exploratory factor analysis (EFA), confirmatory factor analysis (CFA), two-parameter logistic item response theory (IRT) modeling, evaluation of differential item functioning (DIF), and evaluation of criterion and construct validity.Qualitative feedback supported the conceptualization of the Social Health domain framework (Social Function and Social Relationships subcomponents). Validation testing participants (n = 2,208 English; n = 644 Spanish) were diverse in terms of gender, age, education, and ethnicity/race. EFA, CFA, and IRT identified 7 unidimensional factors with good model fit. There was no DIF by language, and good evidence of criterion and construct validity.PROMIS English and Spanish language instruments (v2.0), including computer-adaptive tests and fixed-length short forms, are publicly available for assessment of Social Function (Ability to Participate in Social Roles and Activities, and Satisfaction with Social Roles and Activities) and Social Relationships (Companionship; Emotional, Informational and Instrumental Support; and Social Isolation). Measures of social health will play a key role in applications that use ecologic (or determinants of health) models that emphasize how patients' social environments influence their health.
| S-EPMC4159098 | biostudies-other
Project description:BACKGROUND:Recent research among cancer survivors suggests that health behaviors and coping are intertwined, with important implications for positive behavior change and health. Informal caregivers may have poor health behaviors, and caregivers' health behaviors have been linked to those of survivors. AIMS:This hypothesis generating study assessed the correlations among health behaviors and coping strategies in a population of lung and colorectal cancer caregivers. METHOD:This cross-sectional study used data from the Cancer Care Outcomes Research & Surveillance Consortium. Caregivers ( n = 1,482) reported their health behaviors, coping, and sociodemographic and caregiving characteristics. Descriptive statistics assessed the distribution of caregivers' health and coping behaviors, and multivariable linear regressions assessed the associations between health behaviors and coping styles. RESULTS:Many informal caregivers reported regular exercise (47%) and adequate sleep (37%); few reported smoking (19%) or binge drinking (7%). Problem-focused coping was associated with greater physical activity and less adequate sleep (effect sizes [ESs] up to 0.21, p < .05). Those with some physical activity scored higher on emotion-focused coping, while binge drinkers scored lower (ES = 0.16 and 0.27, p < .05). Caregivers who reported moderate daily activity, current smoking, binge drinking, and feeling less well rested scored higher on dysfunctional coping (ES up to 0.49, p < .05). DISCUSSION:Health behaviors and coping strategies were interrelated among informal cancer caregivers. The relationships suggest avenues for future research, including whether targeting both factors concurrently may be particularly efficacious at improving informal caregiver self-care. CONCLUSION:Understanding the link between health behaviors and coping strategies may inform health behavior research and practice.
| S-EPMC5623644 | biostudies-literature