Caregiver Health Research Articles

Mental health in secondary school-aged children with epilepsy and their primary caregivers: A case control study

PurposeTo describe the prevalence and associated factors of mental health problems in secondary school-aged (11–16 years) children with epilepsy and their primary caregivers compared to a control group without epilepsy. MethodsChildren with epilepsy (n = 60), controls (n = 49), and caregivers (n = 60 epilepsy and n = 49 control group) completed a measure of the child's mental health (Strengths and Difficulties Questionnaire; SDQ). Primary caregivers in both groups completed a measure of their own mental health (Depression, Anxiety, and Stress Scale-21; DASS-21). Factors associated with child and caregiver mental health in the epilepsy group were explored using linear regression. ResultsThere were no significant differences between the epilepsy and control group regarding age, gender, ethnicity and socioeconomic status. A higher proportion of children with epilepsy scored in the at-risk range on the SDQ indicating more mental health problems than the control group, as reported by the children (45% vs. 24 %) (p = 0.026) and caregivers (52% vs. 14 %) (p < 0.001). Primary caregivers of children with epilepsy had more symptoms of depression (p = 0.001), anxiety (p = 0.028) and stress (p = 0.019) than caregivers in the control group. Children with epilepsy with greater motor coordination problems had greater mental health difficulties. Children with epilepsy with more mental health difficulties had caregivers with more difficulties and caregivers of children with earlier onset of seizures had more mental health difficulties. ConclusionsEpilepsy confers a high risk for mental health problems in adolescents and their primary caregivers. There is a need to better understand the relationship between caregiver and child mental health difficulties in epilepsy.

Gender Inequalities of Health and Quality of Life in Informal Caregivers in Spain: Protocol for the Longitudinal and Multicenter CUIDAR-SE Study.

The aging population and increased disability prevalence in Spain have heightened the demand for long-term care. Informal caregiving, primarily performed by women, plays a crucial role in this scenario. This protocol outlines the CUIDAR-SE study, focusing on the gender-specific impact of informal caregiving on health and quality of life among caregivers in Andalusia and the Basque Country from 2013 to 2024. This study aims to analyze the gender differences in health and quality of life indicators of informal caregivers residing in 2 Spanish autonomous communities (Granada, Andalusia, and Gipuzkoa; Basque Country) and their evolution over time, in relation to the characteristics of caregivers, the caregiving situation, and support received. The CUIDAR-SE study uses a longitudinal, multicenter design across 3 phases, tracking health and quality of life indicators among informal caregivers. Using a questionnaire adapted to the Spanish context that uses validated scales and multilevel analysis, the research captures changes in caregivers' experiences amid societal crises, notably the 2008 economic crisis and the COVID-19 pandemic. A multistage randomized cluster sampling technique is used to minimize study design effects. Funding for the CUIDAR-SE study was in 3 phases starting in January 2013, 2017, and 2021, spanning a 10-year period. Data collection commenced in 2013 and continued annually, except for 2016 and 2020 due to financial and pandemic-related challenges. As of March 2024, a total of 1294 participants have been enrolled, with data collection ongoing for 2023. Initial data analysis focused on gender disparities in caregiver health, quality of life, burden, perceived needs, and received support, with results from phase I published. Currently, analysis is ongoing for phases II and III, as well as longitudinal analysis across all phases. This protocol aims to provide comprehensive insights into caregiving dynamics and caregivers' experiences over time, as well as understand the role of caregiving on gender inequality in health, considering regional variations. Despite limitations in participant recruitment, focusing on registered caregivers, the study offers a detailed exploration of the health impacts of caregiving in Spain. The incorporation of a gender perspective and the examination of diverse contextual factors enrich the study's depth, contributing significantly to the discourse on caregiving health complexities in Spain. DERR1-10.2196/58440.

Knowledge, Attitudes and Practices of Health Workers and Caregivers Towards Retinopathy of Prematurity in Uganda: A Mixed‐Methods Study

ABSTRACTIntroductionRetinopathy of prematurity (ROP) is a significant global issue and a leading cause of preventable childhood blindness. Early screening and timely management of preterm babies at risk are crucial. To effectively implement this strategy, it is essential that caregivers and health workers are well‐informed about ROP. This study plays a vital role in assessing the knowledge, attitudes and practices of caregivers and healthcare workers towards ROP in Uganda, providing valuable insights into the current understanding and approach towards this condition.MethodWe conducted a sequential explanatory mixed‐methods study, involving 214 participants. This group included 12 paediatricians, 56 neonatal nurses and 146 caregivers, all of whom play crucial roles in the healthcare system. The study was conducted at two tertiary hospital neonatal clinics in Uganda. A researcher‐administered structured questionnaire was used to collect the data on the participants’ knowledge, attitudes and practices. Descriptive statistics were used to describe variables, while qualitative data were analysed using thematic content analysis.ResultsWe recruited 146 caregivers with a mean age of 29.4 (±standard deviation 6.5) years, 12 paediatricians with a median age of 37 years (IQR: 36–41) and 56 nurses with a median age of 35 years (30–42). The median working duration of health workers at the neonatal unit was 3 (IQR: 1.8–4.2) years. Thirty‐two (21.92%) caregivers and 28 (49.12%) health workers had good knowledge about ROP, whereas 9 nurses and 2 paediatricians did not know about ROP. Barriers to ROP screening included limited resources (equipment, time and skilled personnel) and limited parental involvement. Enhancing collaboration among medical care teams has the potential to improve ROP screening.ConclusionInsufficient knowledge about ROP among caregivers calls for increased efforts to educate and sensitise them about ROP and its risk factors.

Randomised controlled trial of an online mental health and suicide gatekeeper resource for parents and caregivers: study protocol

IntroductionRates of help-seeking for mental disorders and suicide are low among children and adolescents. Parents are viewed as gatekeepers for their care, yet they may lack the knowledge and skills...

Health Coaching Improves Outcomes of Informal Caregivers of Adults With Chronic Heart Failure: A Randomized Controlled Trial.

Caring for someone with heart failure takes an emotional and physical toll. Engaging in self-care may decrease stress and improve the health of informal caregivers. We conducted a randomized controlled trial testing the efficacy of a virtual health coaching intervention, compared with health information alone, on the self-care, stress, coping, and health status of heart failure caregivers. We enrolled 250 caregivers providing care at least 8 hours/week, reporting poor self-care, and able to use technology. All received a tablet device programmed with websites providing vetted information on heart failure and caregiving. Half were randomized to also receive 10 synchronous support sessions virtually with a health coach over 6 months. Data on self-care, stress, coping, and health status were collected at baseline and 3 and 6 months. Linear mixed-effects models were used to assess the interaction between time and treatment group. The sample was majority female (85.2%), White (62.2%), spouses (59.8%), and aged 55±13.6 years. Many were employed full time (41.8%). They had been caring for the patient 8 hours/day for a median of 3.25 years. In the intention-to-treat analysis, caregivers who received the health coach intervention had statistically and clinically greater improvement across 6 months compared with the control group in the primary outcome of self-care maintenance (5.05±1.99; P=0.01) and stress (-4.50±1.00; P<0.0001). Self-care neglect declined significantly (-0.65±0.32; P=0.04), but the difference between the treatment arms disappeared when the results were adjusted for multiple comparisons. Mental health status improved statistically but not clinically (3.35±1.61; P=0.04). Active coping improved in both groups but not significantly more in the intervention group (P=0.10). Physical health status was unchanged (P=0.27). This virtual health coaching intervention was effective in improving self-care and stress in heart failure caregivers.

Suicide risks among caregivers of patients with depressive disorders.

To investigate the suicide risk factors among caregivers of individuals with depression who may develop suicidal ideation due to the ongoing challenges of managing the patient's mood fluctuations. This cross-sectional study enrolled dyads of patients with depression and their caregivers from a medical centre. The assessment included a psychiatric diagnostic interview, the Hospital Anxiety and Depression Scale, the List of Threatening Experiences, Benefit Finding Scale, Numerical Pain Rating Scale, Stigma Subscale of the Explanatory Model Interview Catalogue, Big Five Inventory-10, the Family APGAR Index and the Suicide Assessment Scale. Univariate and multivariate regression analysis were used to explore the interrelationship between the mental health of patients and caregivers. Among the 125 caregivers, 60.0% (n = 75) were females. The most common psychiatric diagnoses were depressive disorders (33 of 125; 26.4%), followed by anxiety disorders (21 of 125; 16.8%) and insomnia disorder (19 of 125; 15.2%). There was a significant association between the stressful life events of depressive patients and the suicide risk of their caregivers. The severity of anxiety and depression in caregivers was significantly associated with the suicide risk among the caregivers. A relationship may exist between the psychological well-being of patients with depression and their caregivers.

Association of Caregiving Receipt With Mental Health Utilization in a National Cohort of Older Adults

ObjectiveThere exist significant age disparities in mental health (MH) utilization, such that older adults, including older veterans, are much less likely to use MH services. In-home caregivers represent a novel, yet understudied, pathway to increase appropriate utilization. We sought to examine the association between receiving caregiving assistance and MH utilization and test moderation effects of cognitive status and depression severity in a sample of older veterans. MethodsCross-sectional, mixed effects logistic regression with moderation analyses was used with a unique data resource combining survey data from the 2000–2012 U.S. Health and Retirement Study with Veterans Affairs (VA) healthcare administrative records. The analytic sample included N=1,957 Community-dwelling veterans (mean age 68.2 [9.7]), primarily male (96.5%) and non-Hispanic white (77.0%). Measures included MH utilization extracted from VA records or self-report; CESD-8 for depressive symptoms; and the Langa-Weir cognitive status classification using the modified TICS. ResultsAfter accounting for demographics, spousal caregiver availability, health factors, and socioeconomic status, caregiving receipt was associated with two-fold odds of MH utilization, compared to receiving no assistance (8,839 person-year observations; OR = 2.02; 95% CI 1.54–2.65) and remained similar following VA policy changes to enhance MH access. Exploratory analyses revealed that categories of cognition and depressive symptoms may moderate the association. ConclusionReceipt of any in-home caregiving is associated with increased likelihood of MH use by older adults. Caregivers may represent an underutilized resource to reduce age-related mental health access disparities.

Gerontology in Public Health: A Scoping Review of Current Perspectives and Interventions.

The intersection of gerontology and public health is increasingly vital due to the global aging population and its implications for health systems. This scoping review aims to map existing literature on gerontology within public health, identify current perspectives, and evaluate interventions tailored to the needs of older adults. A systematic search was performed using predefined keywords across multiple databases, including PubMed, Google Scholar, Scopus, and Web of Science. The review included 42 studies that employed various designs, all focusing on public health interventions targeting the aging population. Key findings indicate a pressing need to integrate gerontological principles into public health practice, recognizing the heterogeneous nature of older adults and the significance of social determinants of health. Interventions ranged from preventive health measures and chronic disease management programs to health promotion activities and caregiver support, including the application of technology to improve health outcomes. However, there was a notable lack of research on diverse populations and mental health interventions. The review also uncovered critical gaps in the literature, such as economic barriers to care access and the necessity for comprehensive policies addressing the aging population's diverse needs. In conclusion, this review emphasizes the importance of a multidimensional approach to effectively addressing older adults' health needs. While several effective interventions exist, there is an urgent need to tackle identified gaps, particularly concerning diverse populations and mental health, to enhance overall health strategies for the aging demographic.

Impact of Caregiving Burden on the Mental Health of Caregivers: A Study of Individuals Caring for Chronically Ill Patients

The present research aims to investigate the relationship between the caregiving burden and its impact on the mental health of caregivers of chronically sick patients. It was hypothesized that the caregiving burden would be positively associated with higher levels of depression, anxiety, and stress among caregivers of chronically sick patients; and caregiving burden would significantly predict the psychological distress (depression, anxiety, stress) in caregivers of chronically sick patients. A sample of 220 caregivers (n=220) was selected conveniently which comprised of 102 males and 118 females selected from the different hospitals. The study employed a correlational research design to collect data, using two standardized scales, the Depression, Anxiety, and Stress Scale-21 (DASS-21) and Zarit Burden Interview. The data were analyzed by using SPSS to investigate the relationship between the caregiving burden and the caregivers' mental health. The findings showed a significant relationship between caregiving burden and increased psychological distress. This implies that higher caregiving burden leads to higher psychological distress. The findings emphasize the importance of proper interventions and support facilities for caregivers. The study adds to the existing knowledge by addressing the impact of the caregiving burden. Additional research is needed to investigate the potential mediator or moderators of the association between the burden and the mental health outcomes, thereby improving our understanding of the intricacies of caregiving experiences.

The effectiveness of emotion-oriented approaches on psychological outcomes and cognitive function in older adults: A meta-analysis of randomised controlled trials.

Emotion-oriented approaches have demonstrated effectiveness in the care of the elderly. However, related studies have reported conflicting results. We aimed to explore the pooled effect of emotion-oriented approaches on the psychological outcomes and cognitive function of older adults through a meta-analysis of randomised controlled trials (RCTs). We searched eight databases - CINAHL, Cochrane, Embase, Ovid MEDLINE, PsycINFO, PubMed, Scopus, and Web of Science - for RCTs from inception to 11 January 2024. Participants aged 60 years or older who received emotion-oriented approaches as the intervention, and reported outcomes of interest in the studies were included. The primary outcome was psychological outcomes (depression, self-esteem, life satisfaction and loneliness), and the secondary outcome was global cognitive function. The pooled effect size was computed in comprehensive meta-analysis 3.0 software using Hedges' g (g) with random-effects model. Furthermore, heterogeneity was assessed through Cochrane's Q and I2 tests. The quality of the included studies was evaluated using the Cochrane Risk of Bias tool. To explore potential sources of heterogeneity, moderator analyses were conducted. We included 37 RCTs and found that emotion-oriented approaches improve depression (g = -0.82, 95% CI = -1.08, -0.56), self-esteem (g = 0.98, 95% CI = 0.31, 1.64), life satisfaction (g = 0.63, 95% CI = 0.37, 0.88), loneliness (g = -2.22, 95% CI = -3.80, -0.64) and global cognitive function (g = 0.34, 95% CI = 0.19, 0.49) in older adults. We also observed significant follow-up effects on depression (g = -1.40, 95% CI = -2.45, -0.34) and loneliness (g = -3.48, 95% CI = 6.02, -0.94). Emotion-oriented approaches are promising interventions in improving psychological outcomes and global cognitive function in older adults. Health care workers should receive training to promote and integrate emotion-oriented approaches into routine care of older adults emphasising the importance of collaborative efforts among health care professionals and caregivers to ensure holistic care delivery.

Burden of care and mental health of informal caregivers of children with developmental disabilities in Sub-Saharan Africa: the moderating role of resilience

Caregivers play the most important role in the care of children with developmental challenges. The care received by children with developmental disabilities from caregivers is essential and indispensable as these children will not function well without such care. However, caregiver characteristics and factors internal to the caregivers, such as their state of mental health or ability to adapt to caregiving stress, may impact the quality of care that they give to these children and require attention. Therefore, we investigated the unique contributions of resilience and burden of care on the mental health of informal caregivers of children with developmental disabilities (N = 228, 165 females, 63 males, mean age = 27.85, SD = 10.02) aged between 16 to 67 years old. Additionally, we examined whether resilience would moderate the association between the burden of care and mental health. The Connor-Davidson Resilience Scale, Zarit Burden Interview, and General Health Questionnaire were used to collect data from the caregivers. The data were then analysed using Pearson correlation and the Hayes PROCESS module in SPSS 27. The results indicated that burden of care was negatively associated with mental health, while resilience was positively associated with mental health. The result further indicated that resilience did not significantly moderate the association between the burden of care and mental health. The study concludes that resilience is a potential protective factor for the mental health of caregivers and should be the target of interventions that seek to improve the quality of care for children with developmental disabilities.

Physical pain among family caregivers to older adults: A scoping review of the literature.

Scholarship on the health of family caregivers to older adults continues to expand. Although existing research suggests that many family caregivers experience pain, which impacts their ability to perform caregiving tasks and is associated with care recipients' unmet needs, the scope of research on family caregivers' pain remains poorly characterized. We conducted a scoping review of research on pain among family caregivers to older adults to characterize existing evidence and identify knowledge gaps. We searched multiple databases spanning from January 2012 to July 2023, identified eligible studies using predefined inclusion/exclusion criteria, and extracted key data (e.g., study design/methodology, pain measurement, caregiver pain type, and major findings). We identified 46 eligible studies conducted in the United States (n = 19) and internationally (n = 27). Studies often focused on caregivers for older adults with specific health conditions, such as cancer (n = 11), dementia (n = 8), or stroke (n = 3). The most commonly employed pain measure was a single-item dichotomous question about pain (n = 16), followed by a visual numeric or visual analog scale (n = 11). Nine studies (five randomized controlled trials) reported on five caregiver pain management interventions, including yoga/exercise programs and caregiver education programs. Existing research on family caregivers' pain offers an important foundation. However, more robust research designs are necessary. We identify possibilities for future studies in addition to opportunities for systematic investigations to support the family caregivers being relied upon to care for the increasing number of older adults.

Psychological Distress, Multicare Needs and Social Resource Utilisation of Family Caregivers of People With Dementia: A Descriptive-Correlational Study.

The population of people with dementia increases yearly, imposing a growing burden on family caregivers. Psychological distress impacts the mental health of family caregivers of people with dementia. Caregiver psychological distress can result in increased social resource utilisation and unmet multicare needs. The study explored the psychological distress of family caregivers of people with dementia and examined the impact on social resource utilisation and multicare needs. A descriptive-correlational study collected data in Taiwan from a cross-sectional sample of family caregivers of people with dementia using a self-report questionnaire. Data were analysed using linear and logistic regression. A total of 301 caregivers provided data for analysis. Nearly two-thirds of caregivers were female with a mean age of 57 years old (SD = 12). Over half of the family caregivers of people with dementia experienced mild-to-moderate psychological distress. The greater the psychological distress, the greater the probability of using social resources (1.09 times per 1-point increase, p = 0.002). Psychological distress was positively associated with the number of caregivers' care needs (β = 0.371, p < 0.001). Findings of this study can assist healthcare professionals in better understanding the psychological distress and care needs of caregivers. Services designed to meet the needs of family caregivers will improve psychological distress.

Mental health of caregivers of children with medical complexity: group-based trajectory modelling

ObjectiveTo describe the mental health trajectories of caregivers of children with medical complexity (CMC) and explore child characteristics associated with below-average caregiver mental health.DesignA secondary analysis of prospectively collected data...

The effect of mindfulness-based interventions on caregiver burden, quality of life and psychological distress in caregivers of adults with chronic diseases: Systematic review and meta-analysis of randomized controlled trials.

Chronic diseases requiring long-term treatment, care, and follow-up can negatively affect the health and well-being of caregivers. Mindfulness-based interventions (MBIs) are increasingly used as a mental health intervention to control the psychological problems experienced by caregivers and improve their quality of life. This systematic review and meta-analysis aimed to provide evidence for a holistic evaluation and synthesis of the effects of MBIs applied to caregivers of adults with chronic disease on the burden, quality of life, and psychological distress. Studies evaluating the effects of mindfulness-based interventions on caregivers of adults with chronic diseases and published through September 2023 were searched using PubMed, Web of Science, Scopus, and EBSCO. Methodological quality was assessed with the modified JADAD scale, and bias was assessed with the Cochrane risk-of-bias tool for randomized trials. Randomized controlled studies were included. The standardized mean difference with a 95% confidence interval was calculated. Heterogeneity was analyzed using the I2 test and Q statistic. Publication bias was assessed with the Egger regression test. This meta-analysis included 12 studies. Pooled evidence found that MBIs resulted in significant improvements in stress, anxiety, depression, and caregiver burden in caregivers of adults with chronic illness but had no significant effects on quality of life, resilience, and mindfulness. The Egger's test showed no evidence of publication bias. MBIs can be considered as a helpful method to increase psychological well-being and reduce caregiver burden in caregivers of adults with chronic diseases. These findings may direct clinicians to conduct mindfulness-based interventions for caregivers of adults with chronic diseases.

Impact of informal caregiving on depressive symptoms among a national cohort of men

BackgroundThere is evidence that unpaid caregiving can have negative effects on the mental health of female caregivers; however, evidence of impacts on male caregivers is limited. This study addressed this...

The role of caregivers in mental health and child development policy and practice

The role of caregivers in mental health and child development policy and practice

Zero-Dose Childhood Vaccination Status in Rural Democratic Republic of Congo: Quantifying the Relative Impact of Geographic Accessibility and Attitudes toward Vaccination.

Despite efforts to increase childhood vaccination coverage in the Democratic Republic of the Congo (DRC), approximately 20% of infants have not started their routine immunization schedule (zero-dose). The present study aims to evaluate the relative influence of geospatial access to health facilities and caregiver perceptions of vaccines on the vaccination status of children in rural DRC. Pooled data from two consecutive nationwide immunization surveys conducted in 2022 and 2023 were used. Geographic accessibility was assessed based on travel time from households to their nearest health facility using the AccessMod 5 model. Caregiver attitudes to vaccination were assessed using the survey question "How good do you think vaccines are for your child?" We used logistic regression to assess the relationship between geographic accessibility, caregiver attitudes toward vaccination, and their child's vaccination status. Geographic accessibility to health facilities was high in rural DRC, with 88% of the population living within an hour's walk to a health facility. Responding that vaccines are "Bad, Very Bad, or Don't Know" relative to "Very Good" for children was associated with a many-fold increased odds of a zero-dose status (ORs 69.3 [95%CI: 63.4-75.8]) compared to the odds for those living 60+ min from a health facility, relative to <5 min (1.3 [95%CI: 1.1-1.4]). Similar proportions of the population fell into these two at-risk categories. We did not find evidence of an interaction between caregiver attitude toward vaccination and travel time to care. While geographic access to health facilities is crucial, caregiver demand appears to be a more important driver in improving vaccination rates in rural DRC.

Navigating the challenges of extending working life: a study of employment support services for older workers in Hong Kong

PurposeThis research highlights age-specific barriers to employment for older workers and the gap between activation policy design and implementation, focusing on difficulties in extending working life under employment support services.Design/methodology/approachThis research employed a qualitative approach, utilizing semi-structured interviews to gather perspectives on extending the working lives of older adults. Eighteen experienced social workers who worked in employment support services for older workers who aged fifty-five and above participated in the study.FindingsThis study underscores the importance of comprehensively understanding the heterogeneity of individuals' circumstances and emphasizes the impact of intersectionality on the development of extending working life. It incorporates individual and familial difficulties, including considering caregiving responsibilities, health issues and housing challenges before exploring employment-related concerns. The study also highlights external factors influencing older workers' employment prospects, including employer perspectives, government support levels and public recognition of the necessity to extend working life.Research limitations/implicationsThis research sheds light on the impact of welfare-related stigma, which imposes obstacles and inflexibility on older workers seeking employment. It ultimately contributes to the sustainability and dynamism of the Asia–Pacific workforce while also informing regional discussions on social security and welfare services.Originality/valueIt uniquely employs the perspectives of social workers providing employment support services to highlight challenges and policy gaps in extending the working lives of older workers in Hong Kong. It also provides practical insights into strategies and mechanisms for extending working life across diverse social contexts.

380P Understanding the burden and mental health of informal caregivers for stomach and pancreatic cancer patients

380P Understanding the burden and mental health of informal caregivers for stomach and pancreatic cancer patients