Caregiver Health Research Articles

Aging Well Together: Promoting Brain Health for Aging Individuals with IDD and Their Families

Adults with intellectual and developmental disabilities (IDD) have been historically excluded from participating in aging-focused research, continue to experience barriers accessing appropriate health care, and encounter distinct challenges as they age compared to people without IDD. These challenges and their effects often extend to their immediate support system, including family caregivers, including parents, siblings, and other kin. Family caregivers, often in the role of 'perpetual caregivers,' can struggle to support aging adults with IDD as they also concurrently experience the effects of their own aging, potentially hindering their ability to provide lifelong care. As parents age, the burden of care may shift to others within this support network such as siblings who, due to various constraints (e.g., geographic location, personal obligations, and financial restrictions) can also experience challenging caregiving responsibilities. Research on the mental health of family caregivers has predominantly focused either on the impact of caregiving among parents of people with IDD (and to a lesser extent on siblings) or on late-life caregivers of aging adults without IDD. This leaves a significant gap in understanding how to support caregivers during mid-late adulthood as their family member with IDD ages or as they themselves undergo age-related changes. 
 In this paper, we provide a brief overview of research on family caregiving of older adults with IDD, followed by a description of a national effort, The Brain Health-IDD initiative. This initiative aims to develop strategies that will support the promotion of brain health in aging adults with IDD and their family caregivers. As part of this effort, family caregivers, both siblings and parents of adults with IDD are working together with researchers and clinicians to co-design, co-deliver and evaluate a virtual education program for families. 
 The paper concludes by reflecting on the program's importance from the perspective of sibling and parent caregivers. This inclusive approach emphasizes the broader responsibility of supporting families navigating the challenges of disability and aging in mid-late adulthood, highlighting the need for support and awareness across all levels of care. 

Caregiver Mental Health: A Crucial Piece of the Recovery Puzzle

Caregiver Mental Health: A Crucial Piece of the Recovery Puzzle
 The role of a caregiver is multifaceted, encompassing physical, emotional, and sometimes financial responsibilities. Caregivers, whether family members or friends, find themselves navigating various emotions, uncertainties, and responsibilities. The stressors of caregiving and the emotional burden erode their own mental well-being, creating a silent crisis that is left out of the caregiver narrative.
 Studies reveal that caregivers grapple with anxiety, depression, and burnout. Poor mental health is well documented in the caregiving literature.
 One crucial avenue for support lies in psychoeducational programs tailored to caregivers. These initiatives offer practical tools to manage stress, enhance communication, and manage overall mental health. By equipping caregivers with knowledge, we empower them to navigate the challenges with greater understanding and confidence.
 Peer support networks represent another vital facet of caregiver well-being. Establishing communities where caregivers can share experiences, exchange coping strategies, and find solace in shared understanding is paramount. Breaking the isolation barrier can significantly alleviate the emotional burden on caregivers, creating a sense of belonging in a community that comprehends their unique struggles.
 Yet, the responsibility does not rest solely on caregivers and their communities. Institutions and policymakers must step forward to enact supportive measures. By addressing systemic barriers, we acknowledge the societal responsibility to nurture the mental health of those who selflessly nurture others.
 In nurturing the mental health of caregivers, we fortify the backbone of the recovery process, ensuring a more resilient, compassionate, and sustainable path forward.
 
 

The Cost and Cost-Effectiveness of an Integrated Wasting Prevention and Screening Intervention Package in Burkina Faso and Mali

BackgroundLittle is known about costs and cost effectiveness of interventions that integrate wasting prevention into screening for child wasting. ObjectivesThis study’s objective was to estimate the cost and cost-effectiveness of an intervention that integrated behavior change communication (BCC) and small-quantity lipid-based nutrient supplements (SQ-LNS) into platforms for wasting screening in Burkina Faso (a facility-based platform, where BCC was enhanced compared with standard care) and Mali (a community-based platform, with standard BCC). MethodsActivity-based costing was used to estimate the cost per child-contact for the intervention and the comparison group, which did not receive the intervention. Costs were ascertained from accounting records, interviews, surveys, and observations. The number of child-contacts was calculated using population size estimates and average attendance rates for each service. Costs per disability-adjusted life year (DALY) averted were estimated using a Markov model populated with data from the parent trials on impact of wasting incidence and treatment coverage. ResultsIn the intervention group in Burkina Faso, the cost per child-contact of facility-based screening was $0.85 of enhanced BCC was $4.28, and of SQ-LNS was $8.86. In Mali, the cost per child-contact of community-based screening was $0.57, standard BCC was $0.72, and SQ-LNS was $4.14. Although no SQ-LNS costs were incurred in the comparison groups (hence lower total costs), costs per child-contact for screening and BCC were higher because coverage of these services was lower. The intervention package cost $1073 per DALY averted in Burkina Faso and $747 in Mali. ConclusionsIntegration of wasting prevention into screening for child wasting led to higher total costs but lower unit costs than standard screening due to increased coverage. Greater cost-effectiveness could be achieved if BCC were strengthened and led to improved caregiver health and nutrition practices and if screening triggered appropriate use of services and higher treatment coverage.

Prevention and Treatment of Malnutrition in Older Adults Living in Long-Term Care or the Community: an Evidence-based Nutrition Practice Guideline

Malnutrition in older adults can decrease quality of life and increase risk of morbidities and mortality. Accurate and timely identification of malnutrition, as well as subsequent implementation of effective interventions, are essential to decrease poor outcomes associated with malnutrition in older adults. The Academy of Nutrition and Dietetics Evidence Analysis Center conducted a systematic review of the literature to develop an evidence-based nutrition practice guideline for the prevention and treatment of malnutrition in older adults. The objective of this guideline was to provide evidence-based recommendations to identify, prevent, or treat protein-energy malnutrition in older adults (mean age ≥65 years) living in long-term care and community settings. This guideline provides 11 nutrition recommendations to inform shared decision making among dietitians, members of the health care team, family members or caregivers, and older adults living in long-term care or the community to prevent or treat malnutrition. Topics include dietitian effectiveness, nutrition assessment tools, oral nutrition supplements, food fortification, and home-delivered and congregate meals. Guideline implementation should include consideration of the importance of comprehensive individualized nutrition care for older adults. Future research is needed to address gaps that were identified related to the validity, reliability, and feasibility of nutrition assessment tools, as well as the effectiveness of dietitian interventions on outcomes of interest in older adults living in long-term care and the community.

Depression and anxiety between nurses and nursing assistants working in long-term care facilities during the COVID-19 pandemic.

This study investigated the levels of depression and anxiety in nurses and nursing assistants working in long-term care facilities during the COVID-19 pandemic. We also explored the potential causes of depression and anxiety in nurses and nursing assistants working in long-term care facilities during the pandemic. The COVID-19 pandemic has had a considerable impact on long-term care facilities. The high infection and mortality rates for COVID-19 have resulted in an increased workload for caregivers. The COVID-19 pandemic exposedcaregivers working in long-term care facilities to higher risks of anxiety and depression. Additionally, the high risk of infection in the work environment and concerns about spreading COVID-19 to family members and long-term care facility residents led to various forms of stress among caregivers. The present study was a cross-sectional study. Questionnaires were used to investigate depression and anxiety among regarding nurses and nursing assistants working in long-term care facilities during the pandemic. The depression and anxiety levels of the nurses were higher than nursing assistants, but had no statistically significant difference (p=0.551). The factors influencing levels of depression and anxiety in nurses contained facility affiliation and experience working. In terms of nursing assistants, age, marital status, and facility affiliation were correlated with the levels of depression and anxiety. The pandemic has severely impacted caregivers. In the process of implementing pandemic prevention measures and providing care for COVID-19 patients, safeguarding the psychological health of caregivers is also essential. The levels of depression and anxiety in nurses were higher than in nursing assistants working in long-term care facilities during the pandemic. Long-term care facilities managers are recommended to enhance the education and training process for caregivers. Managers are also recommended to ensure provision of sufficient amounts of pandemic prevention equipment and resources.

We-Care-Well: exploring the personal recovery of mental health caregivers through Participatory Action Research.

Family caregivers play a critical role in supporting the recovery journeys of their loved ones, yet the recovery journeys of family caregivers have not been well-explored. Using a Participatory Action Research approach, we explore the personal recovery journeys of family caregivers for individuals with mental illness. This case study involved piloting and exploring the impact of a novel online workshop series offered to mental health caregivers at Ontario Shores Center for Mental Health Sciences. Recovery courses and workshops conventionally engage patients living with mental health conditions. In the current case, the recovery model is adapted to the needs and experiences of their family caregivers, resulting in a pilot workshop series called "We Care Well". Through participant-led discussions, interactive and take-home activities, and experiential learning, caregivers co-created workshop content and engaged in peer-learning on seven personal recovery-oriented topics. This included: self-care, resilience-building, non-violent communication, storytelling, and mental health advocacy. Throughout the sessions, participants implemented their learnings into their caregiving roles, and shared their experiences with the group to progress through their own recovery journeys. The We Care Well series was found to be an effective intervention to adapt and apply the personal recovery framework to mental health caregivers. PAR, and co-design are viable approaches to engage caregivers in mental health research, and can facilitate knowledge exchange, as well as relationship building with peers and program facilitators.

Experıences of loss and theır management by ınformal caregıvers ın the communıty. Perceıved Qualıty of Lıfe of people wıth chronıc dıseases

Background: Informal caregivers play a vital role in caring for patients with chronic illnesses, but this care can significantly affect their mental health and well-being, particularly after the loss of the patient. Due to the significance of the issue and limited research in the field, it is important to identify factors associated with the mental health of informal caregivers. Method and Material: This study aimed to investigate the experiences of loss and their management by informal caregivers of people with chronic diseases. Specifically, it evaluated the relationship between experiences of loss and (1) mental health and (2) socio-demographic characteristics of informal caregivers. A quantitative survey was conducted on a sample of 98 informal caregivers of patients with chronic diseases, using the Core Bereavement scales BEQ-24 and DASS-21. Results: The data analysis revealed that 25.5% of informal caregivers were prepared to experience loss, while only 12.2% sought psychological support to manage their experiences. Informal caregivers often experienced loss with sadness, loneliness, and nostalgia while recalling memories with the deceased patient. Fewer caregivers experienced guilt, self-blame, and anger or sought to fulfill their emotional and existential needs. The study also found that experiences of loss were associated with symptoms of depression, anxiety, and stress in informal caregivers of people with chronic diseases. Conclusions: The study underscores the impact of caring for patients with chronic illnesses on mental health and wellbeing of informal caregivers, particularly after the loss of the patient. The results highlight the need for interventions to support informal caregivers.

Cost-consequence analysis of ambulatory clinic- and home-based multidrug-resistant tuberculosis management models in Eswatini.

We compared the cost-consequence of a home-based multidrug-resistant tuberculosis (MDR-TB) model of care, based on task-shifting of directly observed therapy (DOT) and MDR-TB injection administration to lay health workers, to a routine clinic-based strategy within an established national TB programme in Eswatini. Data on costs and effects of the two ambulatory models of MDR-TB care was collected using documentary data and interviews in the Lubombo and Shiselweni regions of Eswatini. Health system, patient and caregiver costs were assessed in 2014 in US$ using standard methods. Cost-consequence was calculated as the cost per patient successfully treated. In the clinic-based and home-based models of care, respectively, a total of 96 and 106 MDR-TB patients were enrolled in 2014, with treatment success rates of 67.8% and 82.1%. Health system costs per patient treated were slightly lower in the home-based strategy (US$19 598) compared to the clinic-based model (US$20 007). The largest costs in both models were for inpatient care, administration of DOT and injectable treatment, and drugs. Costs incurred by patients and caregivers were considerably higher in the clinic-based model of care due to the higher direct travel costs to the nearest clinic to receive DOT and injections daily. In total, MDR patients in the clinic-based strategy incurred average costs of US$670 compared to US$275 for MDR-TB patients in the home-based model. MDR-TB patients in the home-based programme, where DOT and injections was provided in their homes, only incurred out-of-pocket travel expenses for monthly outpatient treatment monitoring visits averaging US$100. The cost per successfully treated patient was US$31 106 and US$24 157 in the clinic-based and home-based models of care, respectively. The analysis showed that, in addition to the health benefits, direct and indirect costs for patients and their caregivers were lower in the home-based care model. The home-based strategy used less resources and generated substantial health and economic benefits, particularly for patients and their caregivers, and decision makers can consider this approach as an alternative to expand and optimise MDR-TB control in resource-limited settings. Further research to understand the appropriate mix of treatment support components that are most important for optimal clinical and public health outcomes in the ambulatory home-based model of MDR-TB care is necessary.

Health literacy and household financial loss on malaria treatment for children under five in Ghana: a patients' perspective.

Inadequate health literacy increases medical costs and leads to poor health outcomes. However, there is a paucity of empirical evidence of such associations in sub-Saharan Africa. This study investigates how the household cost of malaria in children under five in Ghana varies based on different levels of health literacy. A cross-sectional survey involving 1270 caregivers of children under five was conducted. The survey included health literacy questionnaire and several pieces of sociodemographic and behavioural variables. We created seven caregiver health literacy profiles by scoring nine dimensions. The mean total cost for managing malaria among respondents was US$20.29 per episode. The total household cost for caregivers with high health literacy (Profile 1) (US$24.77) was higher than all other profiles, with the lowest cost (US$17.93) among the low health literacy profile (Profile 6). Compared with Profile 4, caregivers with high health literacy (Profile 1) spent more on managing malaria in children, while those with the lowest health literacy (Profile 7) spent less. The current study presents a snapshot of malaria treatment costs, and argues that low health literacy may lead to increased costs due to possible reinfections from delayed healthcare use. There is a need for longitudinal studies to understand causal relationship between health literacy and household expenses on malaria treatment to inform policy development and interventions. This study explores the impact of caregiver health literacy levels on the cost of managing malaria incidents in children under five in Ghana. High health-literate caregivers incurred the highest total household cost at US$24.77, with US$17.93 incurred by lower health-literate caregivers per malaria episode.

The effect of emotional freedom techniques (EFT) on anxiety and caregiver burden of family caregivers of patients with heart failure: A quasi-experimental study.

Family members are at the forefront of providing care to patients with chronic illnesses, such as heart failure (HF). Since patient caregiving can affect the mental and physical health of family caregivers, the implementation and training of new psychological interventions by nurses are considered important and necessary for family caregivers. Therefore, the aim of this study was to evaluate the effect of emotional freedom techniques (EFTs) on anxiety and caregiver burden of family caregivers of patients with HF. This study was a quasi-experimental study, in which 91 family caregivers participated. The family caregivers were assigned into two groups of intervention (n = 46) and control (n = 45). Data were collected using a demographic information form, Zung Self-Rating Anxiety Scale (SAS), and Caregiver Burden Inventory (CBI) developed by Novak and Guest. The intervention group underwent EFT training within six sessions, while the control group received no training. Descriptive statistics (mean, standard deviation, and absolute and relative frequency) and inferential statistical tests such as Chi-square, Fisher's exact, and independent t-tests were run, and the data were analyzed by Statistical Package for the Social Sciences (SPSS) version 23 software. The findings showed that the intervention group had a significant improvement in reducing anxiety (P > 0.001). In addition, EFT significantly reduced caregiver burden among family caregivers of HF patients (P > 0.001). EFT could significantly reduce anxiety and caregiver burden in family caregivers of patients with HF in our study. Therefore, nurses working in clinical settings are recommended to learn and use EFT to reduce the anxiety and caregiver burden of patients' family caregivers.

Changes in rural caregivers' health behaviors while supporting someone with cancer: A qualitative study.

Caring for someone with cancer has a significant impact on usual routines, including caregivers' ability to maintain their own health and wellbeing. Caregivers living in rural areas face additional challenges in supporting someone with cancer, and little is known about the impact of caregiving on the health behaviors of rural caregivers. Therefore, this study explored how caring for someone with cancer affected rural caregivers' health behaviors. Through semi-structured interviews, 20 rural caregivers described changes in their health behaviors while caring for someone with cancer and the factors underlying these changes. Specific prompts were provided for diet, physical activity, alcohol, smoking, sleep, social connection and leisure, and accessing health care when needed. Interviews were audio-recorded and transcribed verbatim. Content analysis was used to identify changes in health behaviors and the factors underlying these changes. The factors identified were mapped to the socioecological framework, identifying areas for intervention across multiple levels (individual, interpersonal, organizational, community, and policy). Rural caregivers reported both positive and negative changes to their diet, physical activity, alcohol, and smoking. Sleep, social connection and leisure, and accessing health care were negatively impacted since becoming a caregiver. Designing interventions to address rural caregivers' coping strategies, reduce carer burden and fatigue, improve access to cooking and exercise facilities and social support while away from home, reduce the need to travel for treatment, and increase the financial support available could yield widespread benefits for supporting the health and wellbeing of rural caregivers.

The negative impact on sleep for caregivers of children with intestinal failure on long-term parenteral nutrition

ObjectivesSurvival rates for children with intestinal failure (IF) have improved with care provided in the home by family caregivers. Our objective was to compare total nocturnal sleep time (TST-N) in caregivers of children with IF on home PN to caregivers of children with a chronic medical condition. MethodsA comparative cross-sectional study of sleep was completed. All participants completed actigraphy and subjective measures of sleep (Pittsburgh Sleep Quality Index [PSQI], Multidimensional Assessment of Fatigue (MAF), Epworth Sleepiness Scale (ESS)). Univariate analysis was completed with an alpha value of < 0.05 considered significant. ResultsThirty-eight caregivers of children with IF and 29 caregivers of children without a chronic medical condition participated. Caregivers of children with IF achieved less sleep than caregivers of children without a chronic medical condition (7.0 vs 7.7 h, p < 0.01) resulting in 45 min less sleep per night. Caregivers of children with IF also demonstrated a shorter period of uninterrupted sleep (2.9 vs 4.2 h, p < 0.01), increased wake after sleep onset (49 vs 29 min, p < 0.01), increased night awakenings (8.9 vs 6.0, p < 0.01) and increased PSQI scores (7.7 vs 4.3, p < 0.01) compared to caregivers of healthy children. ConclusionCaregivers of children with IF demonstrated decreased nighttime sleep amounts and sleep quality compared to caregivers of children without a chronic medical condition. This sleep debt may have significant consequences for the long-term health and wellbeing of caregivers and highlights the importance of further research to determine what supports are required to decrease the long-term impact for IF caregivers.

Self-Reported Well-Being of Family Caregivers of Children with Medical Complexity

ObjectiveProvide an in-depth and psychometrically rigorous profile of the emotional well-being and sleep-related health of family caregivers of children with medical complexity (CMC). MethodsCross-sectional survey study of family caregivers of CMC receiving care from a pediatric complex care center between May 2021 and March 2022. Patient Reported Outcomes Measurement Information System Short-Forms (PROMIS-SF) assessed global mental health, emotional distress (anxiety, depression, anger), psychological strengths (self-efficacy, emotional regulation, meaning and purpose), and sleep-related health (fatigue, sleep-related impairment). Student’s t-tests compared the sample’s mean T-scores to US population norms. Pearson’s correlation coefficient (ρ) examined associations between measures of psychological strengths and emotional distress. Unadjusted linear regression analyses explored relationships between well-being outcomes and child and caregiver characteristics. ResultsCompared to US population norms, caregivers of CMC (n = 143) reported significantly lower global mental health and emotional regulation ability as well as elevated symptoms of anxiety, depression, anger, fatigue, and sleep-related impairment (all P < .01). Whereas participants reported a significantly higher sense of meaning and purpose (P < .05), levels of self-efficacy were not significantly different from population norms. We observed moderate-to-strong inverse relationships between psychological strengths and emotional distress (ρ range, −0.39 to −0.69); with the strongest inverse associations found between emotional regulation ability and emotional distress. In exploratory analyses, caregiver race and ethnicity, socioeconomic status, and child health insurance type were significantly associated with caregiver well-being. ConclusionFamily caregivers of CMC report poor well-being, most notably, increased symptoms of anxiety and reduced global mental health and sleep-related health.

The needs for digital health and eHeath literacy of cancer patients, caregivers, and healthcare providers: A multicenter, descriptive correlational study

PurposeDigital health is an indispensable tool, but its use depends on the eHealth literacy (eHL) of end-users. This study aimed to understand the need for digital health and eHL among cancer patients, caregivers, and healthcare providers and to identify differences in digital health needs related to the eHL of cancer patients. MethodsA multicenter, descriptive correlational study was conducted and included a total of 209 patients, 150 caregivers and 150 healthcare providers. Digital health needs were identified, and eHL was measured using the Korean version of the eHealth Literacy Scale. Differences in digital health needs in relation to the eHL of patients were analyzed. ResultsThe most necessary digital health functions among cancer patients and caregivers were ‘information and education on symptom management after cancer treatment’ and ‘education on coping methods for each type of cancer’ (87.1–94.0%). Healthcare providers reported the need for a digital health function for ‘medication information’ and assisting in ‘medical appointments’ (96.7–98.0%). The preferred types of digital health were telemonitoring, mobile services, and telemedicine by telephone (81.3–90.5%). The mean eHL score of the cancer patients was 28.84 ± 6.75. Differences existed in the need for digital health functions and preferences for digital health types between cancer patients with high and low eHL. ConclusionsCancer patients and caregivers expressed strong needs for digital health that provide information and education about symptom management and coping with cancer. Digital health interventions for cancer care need to be developed to reflect the identified needs and preferences and eHL of end-users.

Analysis of the Educational Conditions of Two-Year-Old Children in Kindergartens in Slovakia: A Study from Teachers' Perspectives

The aim of the research was to find out teachers' opinions on selected conditions of upbringing and education of 2-year-old children in kindergartens in Slovakia. These may influence decisions about the admission of 2-year-old children to kindergarten and the quality of the conditions of their education. The research method was an online questionnaire, created and processed in SURVIO software. The survey was conducted in spring 2023. 594 kindergarten teachers completed the questionnaire. The results of the research showed that the family and the nursery are preferred for the upbringing and education of 2-year-old children (50.5%). If 2-year-old children are admitted to kindergarten, they must have certain prerequisites and be in a class with their peers (57.1%). They cannot wear diapers in kindergarten (79.7%) and have to cope with separation from parents (78.2%). 2-year-olds can be in kindergarten if a teacher's assistant works in the classroom (61.5%). Teachers (55.4%) do not prefer a health worker or caregiver with 2-year-olds (51%). For pedagogical work with 2-year-old children, teachers only need a secondary education (39.2%), some already have a bachelor's degree (27.2%). The results confirmed the insufficient methodological support of the issue by the state (60.5%) and the importance of the development of information and methodological material in the KEGA project No. 001UMB-4/2022. It will be used by teachers to improve the conditions for the education of two-year-old children in kindergartens in Slovakia.

WCN24-2293 Knowledge, Attitude and Practice Towards Clean Intermittent Catheterization Among Health Care Professionals and Caregivers of Children with Neurogenic Bladder in Tikur Anbessa Specialized and Zewditu

WCN24-2293 Knowledge, Attitude and Practice Towards Clean Intermittent Catheterization Among Health Care Professionals and Caregivers of Children with Neurogenic Bladder in Tikur Anbessa Specialized and Zewditu

Factors Influencing the Mental Health of Caregivers of Children with Cerebral Palsy

IntroductionCerebral palsy refers to a heterogeneous group of non-progressive neurodevelopmental disorders manifesting in infancy or childhood and varying in severity. It characterized by impaired motor function, sensation, and depressed intellectual abilities. Functional limitations in patients with cerebral palsy may result in chronic dependency, thereby compromising caregivers’ mental health and interfering with the integrity of the family structure.ObjectivesThis study aimed to determine the different factors affecting the mental health of caregivers of children with cerebral palsy and to raise awareness among healthcare providers.MethodsA cross-sectional study was conducted among caregivers of children with cerebral palsy in National Guard Health Affairs-Jeddah, Saudi Arabia, using the Depression Anxiety Stress Scale-21, a validated questionnaire assessing: depression, anxiety, and stress. This questionnaire was used to assess the mental health of the caregivers. In addition, factors reflecting child’s health condition, such as visual impairment, number of emergency department visits, and number of Pediatric Intensive Care Unit admissions were reported to investigate the impact on the caregiver’s mental health.ResultsThe sample included 40 caregivers, of which 72.5% were mothers. According to the Depression Anxiety Stress Scale-21 score, 12.5% (n = 5) of the caregivers had moderate depression scores, 10% (n = 4) revealed extremely severe depression, and 10% (n = 4) showed moderate anxiety. Furthermore, 12.5% (n = 5), 15% (n = 6), and 7.5% (n = 3) of the caregivers have scored as moderate, severe, and extremely severe stress levels, respectively. Caregivers’ depression, anxiety, and stress scores were significantly (p ≤ 0.05) associated with the impact of vision of their dependent children, frequent hospital admissions, and frequent emergency department visits. Increased Pediatric Intensive Care Unit admissions in the past year were also significantly associated with higher caregiver anxiety scores.ConclusionsTo the best of our knowledge, the dimension of caregivers’ stress and anxiety and their association with the children’s dependency level is not well documented in our region. Caregivers of children with cerebral palsy reported having mental health challenges associated with the children’s vision, frequent need for acute medical care, and hospital admissions.Healthcare workers should provide early and proactive planning of medical and social support for children and their families using a family-centered approach.Disclosure of InterestNone Declared

Health effects of caregiving and coping with severe mental disorders: A caregivers' experience.

Informal caregivers are an essential health resource in the care of persons with severe mental disorders, particularly in South Africa where access to mental healthcare services is limited. The study aimed to explore and describe the coping strategies used by informal caregivers and the specific health impacts they face in the context of severe mental disorders in South Africa. The study was conducted in Bushbuckridge municipality situated in the northeastern parts of Mpumalanga province, South Africa. A descriptive qualitative methodology was used to conduct semi-structured interviews with 12 purposefully selected participants. Audio-recorded interviews were translated, transcribed and analysed inductively on NVivo12 using reflexive thematic analysis. The themes identified were caregivers' experience of consequences of caregiving and caregivers' experience of coping with their caregiving role. Participants experienced negative consequences on their emotional, mental and physical health. The participants use internal and external resources to cope with the challenges they face, and many highlighted using emotion-focused coping strategies. The findings revealed an urgent need to develop support strategies to strengthen informal caregivers' coping and promote good health particularly in rural South Africa where informal caregivers play a crucial role in the management of severe mental disorders. The finding demands that policymakers and healthcare providers prioritise the health and well-being of the informal caregivers. There should be policies targeted specifically at developing and implementing caregiver-orientated healthcare services.

Revisiting the association between grandparenting and mental health in China: New evidence from the harmonized CHARLS.

In the context of the global aging challenge, an increasing number of middle-aged and older adults (MAOAs) are engaging in grandparenting. However, the effect of grandparenting on the mental health of caregivers has shown inconsistent findings. To effectively promote healthy aging, it is imperative to adopt a comprehensive perspective and employ a rigorous approach to further investigate the relationship between these two social phenomena. The data from the Harmonized China Health and Retirement Longitudinal Study were analyzed, focusing on MAOAs with at least one grandchild. Mental health assessments used the center for epidemiologic studies depression scale scale. The study employed a series of difference-in-differences (DID) models, especially complemented by propensity score matching, to evaluate the average treatment effect for the treated (ATT) on mental health of caregivers, considering covariates like personal and family characteristics. The intervention perspective includes both the provision and cessation of grandparenting. The study found that providing grandchildren care does not have a significant effect on the mental health of grandparents, in comparison to those who have never engaged in such care (ATT=-0.172, T=0.65, p=0.517 in the PSM-DID model). Furthermore, ceasing this care also appears to have no substantial effect on the mental health of the caregivers, relative to individuals who have consistently offered grandchildren care (ATT=0.060, T=0.26, p=0.795 in the PSM-DID model). Furthermore, subsequent robustness analyses consistently supported these findings, even when considering data from different survey waves. In contrast to many prior studies that have reported either positive or negative effects, our research reveals that grandparenting exerts no significant effect on the mental health of MAOAs. Consequently, health practitioners and policymakers should carefully consider the diverse cultural context when tailoring interventions and support strategies.

Randomized controlled trial of a positive emotion regulation intervention to reduce stress in family caregivers of individuals with Alzheimer’s disease: protocol and design for the LEAF 2.0 study

BackgroundCaring for a loved one with Alzheimer’s disease can be stressful, resulting in poorer emotional and physical health among family caregivers. Although supportive resources for caregivers are available, distance, caregiver health, and the daily demands of caregiving are barriers to access. Based on research demonstrating the importance of positive emotions in coping with stress, our previous trial showed that dementia caregivers who participated in facilitated, web-based delivery of a positive emotion regulation intervention called LEAF (Life Enhancing Activities for Family caregivers) experienced increased positive emotion and decreased depression and anxiety. Building on this evidence, the LEAF 2.0 study aims to test whether web-based, self-guided delivery can confer similar benefits for caregivers of individuals with Alzheimer’s disease.MethodsThis paper presents the design and methods for LEAF 2.0, a 3-arm web-based randomized controlled trial (N = 500) in which family caregivers of patients with Alzheimer’s disease (AD) are randomized to (1) the LEAF intervention facilitated remotely via the web (N = 200), (2) the LEAF intervention self-guided online (N = 200), or (3) an emotion reporting control (N = 100), which then crosses over to the intervention after approximately 6 months, half to the facilitated arm and half to the self-guided arm. We aim to (1) compare the effect of the facilitated and self-guided LEAF positive emotion interventions to an emotion reporting control condition on AD caregiver well-being (positive emotion, depression, anxiety, and perceived stress) and secondary outcomes (caregiving burden, caregiving self-efficacy, positive aspects of caregiving, quality of care, and AD patient quality of life); (2) assess whether effects are mediated by improvements in positive emotion or other aspects of caregiver well-being; and (3) test whether caregiver age or gender or the care recipient’s dementia severity moderates the effects of the intervention.DiscussionIf demonstrated to be effective, LEAF can be widely disseminated and ultimately have a significant impact on the stress experienced by AD caregivers and the well-being of people living with Alzheimer’s disease.Trial RegistrationClinicalTrials.gov NCT03610698.