Adult Caregivers Research Articles

Caring for the child with a tracheostomy through the eyes of their caregiver: A photovoice study

PurposeThis qualitative descriptive study aimed to explore the daily experiences of caregivers of children with medical complexity with a tracheostomy at home. MethodsThis study used photovoice, a participatory action research methodology. Adult English-speaking caregivers of children with a tracheostomy, living in Texas, with access to a smartphone were recruited. Photographs taken by participants and an interview guide were used to guide semi-structured interviews with caregivers. ResultsEight participants were recruited. After analyzing photographs and caregiver interviews, four main themes were identified: role transition, daily challenges, finding support, and thriving in the new normal. ConclusionsCaregivers take on multiple roles, including providing medical care, advocating for their children, and educating others. While facing emotional challenges such as guilt, fear, and exhaustion, caregivers rely on external support systems, emphasizing the need for nurses and healthcare providers to provide comprehensive support and improve the accessibility of home nursing services. Practice implicationsThe findings of this study can inform nurse-led interventions and advocacy efforts aimed at supporting marginalized children with medical complexity with a tracheostomy and their families. These efforts may include enhancing communication and collaboration between families, healthcare workers, and the public, providing comprehensive, proactive support for caregivers, and improving access to home nursing services.

Predictors of mental well-being among family caregivers of adults with intellectual and developmental disabilities during COVID-19.

Internationally, stresses related to the COVID-19 pandemic negatively affected the mental health of family caregivers of adults with intellectual and developmental disabilities (IDDs). This cross-sectional study investigated demographic, situational and psychological variables associated with mental wellbeing among family caregivers of adults with IDDs during the COVID-19 pandemic. Baseline data from 202 family caregivers participating in virtual courses to support caregiver mental well-being were collected from October 2020 to June 2022 via online survey. Mental well-being was assessed using total scores from the Warwick-Edinburgh Mental Wellbeing Scale. Demographic, situational and psychological contributors to mental well-being were identified using hierarchical regression analysis. Variables associated with lower levels of mental well-being were gender (women); age (<60 years old); lack of vaccine availability; loss of programming for their family member; social isolation; and low confidence in their ability to prepare for healthcare, support their family member's mental health, manage burnout and navigate healthcare and social systems. Connection with other families, confidence in managing burnout and building resilience and confidence in working effectively across health and social systems were significant predictors of mental well-being in the final regression model, which predicted 55.6% of variance in mental well-being (P < 0.001). Family caregivers need ways to foster social connections with other families, and support to properly utilise healthcare and social services during public health emergencies. Helping them attend to their needs as caregivers can promote their mental health and ultimately improve outcomes for their family members with disabilities.

Systematic review of burden&amp;quality of life in caregivers of children with schizophrenia (SyREN)

Abstract Background Schizophrenia is a chronic, disabling disorder that affects 23.6 million people worldwide, with patients often needing extensive assistance and care. Main caregivers are frequently family members who may present a reduced quality of life (QoL) due to the high-level burden of care. Literature mostly focuses on the burden caused by other mental disorders or by schizophrenia in both the adult and child population. We aim to assess the burden and QoL in caregivers of children and adolescents with schizophrenia. Methods We conducted a Systematic Review of articles published between 2013 and 2023 on MEDLINE, Scopus, Web of Science, APA PsycARTICLES, CINAHL. We included studies in which a validated instrument was used to measure the burden of caregiving and QoL for adult caregivers of children and adolescent schizophrenic patients. The results were reported following the PRISMA guidelines. Results We identified 1388 studies. We removed 610 duplicates. After screening 788 studies on title and abstract and 52 for full-text, we included one cross-sectional study in China based on the STROBE Checklist. Significant correlations between burden of care and schizophrenia severity, children’s age, period of care, education, sex, residence, and income were reported. Additionally, we screened 7 qualitative studies. Social stigma and struggle were the most frequently reported feelings, and financial burden was the most common external factor associated with a worse quality of life. Conclusions This review revealed a significant research gap in this field. This lack of focused research underscores the urgent need for targeted investigations into the experiences of caregivers of children and adolescents with schizophrenia. Addressing these knowledge gaps will improve support systems and interventions tailored to the unique needs of this population, such as disease-specific advisory, mental health services, social and financial support, and self-help groups. Key messages • We identified a research gap for burden and quality of life in informal caregivers of children with schizophrenia. Education, sex and income of caregivers relate to the burden of care. • Further research is needed to develop strategies to improve support systems and interventions tailored to the unique needs of this population.

An evaluation over time: Dipsalut’s “Program for families”

Abstract Issue Dipsalut’s “Program for Families” is a parental skills and positive parenting program aimed at all fathers, mothers, and other adult caregivers of children aged 3 to 12 in the province of Girona, Spain. The Program is based on the Convention on the Rights of the Child (1989), which recommends that states promote programs that develop parenting styles that respect children’s rights to be heard and recognized. Research supports that offering parenting skills to parents contributes to the child’s well-being throughout the growth stage. Description The program began in 2018 in a pilot phase that lasted until 2019, when the first evaluation was done to compare different methodologies. After selecting a definitive one (based on the method of Adele Faber and Elaine Mazlish), in 2023, an external evaluation was done, with a follow-up of participants from previous editions. In this evaluation process, we considered the durability of the contents over time, evolutions of assistance, and comparison of the modalities of 4 and 6 sessions. A quantitative methodology has been used through a self-administered questionnaire addressed to the participants (387 responses). Results Impact of the program: 78% of parents value the program as having a positive impact on their parenting skills. Durability: there are differences in how the passage of time affects content retention. Impact of attendance: the parenting skills of those who have attended all program sessions last longer. The attendance percentage at all sessions was higher (61.4%) in the four-session modality. Lessons Although families do not remember all the tools learned, their confidence, the improvement in the family atmosphere, and the fact that they feel more skilled are maintained over time. Main messages: Families have improved their parenting skills since the program gives them more tools to manage family conflicts, to promote their children’s self-esteem and to encourage their autonomy. Key messages • With the positive parenting program, parents increase their self-confidence to manage the challenges of parenting, especially in intra-family communication and conflict management. • It is essential to promote positive parenting programs with an experiential methodology and maintained over time.

Mental health impacts of spousal caregiving intensity in the US.

In the US, spouses are a major source of informal care for older adults and, therefore, key to the US national strategy to provide long-term care to the growing population of older adults. Understanding the mental health impacts of spousal caregiving is therefore critically important. Existing studies on the topic have often been limited by methodological limitations, and most overlook the role of caregiving intensity. In this study, we assess the impact of providing different intensities of caregiving to a spouse on mental health outcomes using data from the Health and Retirement Study. We address the endogeneity of the decision to provide different caregiving intensities using an augmented inverse probability weighted (AIPW) estimator adapted to handle multivalued treatments. We check the robustness of our estimates to the AIPW's identifying assumptions by re-estimating the model using a dynamic fixed effects estimator. We find strong evidence that becoming a caregiver is associated with worsened mental health outcomes for women, while the evidence for men is weaker. When disaggregating by caregiving intensity, we find that transitions into high-intensity caregiving lead to large increases in depression symptoms and the probability of exhibiting major depression for both men and women. The overall mental health impact of transiting into caregiving is driven almost exclusively by the negative impact of high-intensity caregiving, as transitions into low- and moderate-intensity caregiving are not associated with worsening mental health in most specifications. This study provides timely insights that can inform the targeting of long-term care policies and programs aimed at supporting family caregivers of older adults.

Caregiving burden, social support, and psychological well-being among family caregivers of older Italians: a cross-sectional study

ObjectivesThis study aimed to identify factors affecting the psychological well-being of family caregivers of dependent older adults in Italy. Understanding these variables is essential for designing interventions to prevent negative outcomes in at-risk caregivers. The research explored how varying levels of caregiving burden and types of perceived social support influence psychological well-being.MethodsA cross-sectional study was conducted among 387 family caregivers of older adults in the Marche region (Italy) between November 2019 and March 2020. Data were collected via a structured questionnaire assessing psychological well-being (WHO-5 Well-Being Index), caregiving burden, and social support (COPE Index). Statistical analyses were performed using Jamovi software, with a significance threshold set at p &amp;lt; 0.05.ResultsA significant negative correlation was found between caregiving burden and psychological well-being [r (364) = − 0.540, p &amp;lt; 0.001], with caregiving burden being a significant predictor of psychological well-being reduction (R2 = 0.290; F = 150, p &amp;lt; 0.001). A threshold value of 2 (on a 1–4 scale) was identified, where caregiving burden predicted a significant reduction in psychological well-being. Conversely, greater perceived social support was positively correlated with better psychological well-being [r (357) = 0.348, p &amp;lt; 0.001] and was a significant predictor of it [R2 = 0.121; F = 49.2, p &amp;lt; 0.001]. Support from social and health services had the most notable impact on psychological well-being. Moreover, social support mitigated the negative impact of caregiving burden on psychological well-being.ConclusionThe study confirms that high caregiving burden adversely affects caregivers’ psychological well-being, while social support plays a protective role. These findings highlight the need for interventions focused on reducing caregiving burden and enhancing support systems for family caregivers.

Perceived burden in adult and pre-elderly informal caregiver

Purpose: Nowadays, caregiver’s role becomes increasingly important in providing care and support for old people who suffered from chronic diseases. Adult and pre-elderly informal caregiver have different growth and development tasks. It is important to identify their perceived burden. The aim of this research was to compare informal caregiver’s perceived burden between adults and pre-elderly. Method: This research was conducted in Sukoharjo Village between March – December 2023. Research design was cross sectional design and simple random sampling technique was used. Total respondent was 74 persons and categorized into adults and pre-elderly group. The instrument of this research was The Informal Caregiver Burden Assessment Questionnaire (QASCI-The Questionario de Avaliacao de Sobrecarga do Cuidador Informal) which has been tested for validity and reliability. Result: Significant differences was found between adults and pre-elderly perceived burden (p=0.000). Adults standard deviation was 25,28 higher compared to pre-elderly standard deviation. This was meant that adult perceived burden was greater than pre-elderly. Conclusion: Adult informal caregiver’s perceived burden was greater than pre-elderly. They have more responsibilities such as taking care of the household, earn living, and educate their children. Good coping mechanisms and family support are needed to overcome the excessive stressors due to caring process.

Preferences in treating polyomavirus infection in kidney transplant recipients: A discrete choice experiment with patients, caregivers, and clinicians.

Treatment strategies for BK polyomavirus (BKPyV) infection in kidney transplant recipients are heterogeneous among clinicians. We aimed to identify the treatment preferences of key stakeholders for BKPyV infection and measure the trade-offs between treatment outcomes. Adult kidney transplant recipients, caregivers, and clinicians were eligible to participate in a discrete choice experiment between February 2021 and June 2022. The five treatment-related attributes were achieving viral clearance and optimal graft function, as well as reducing the risk of graft loss, acute rejection, and complications. Results were analyzed using multinomial logistic models. In total, 109 participants (57 kidney transplant recipients, 10 caregivers, and 42 health professionals) were included. The most important attribute was the risk of graft loss, followed by side effects and acute rejection. As the risk of graft loss increased, all participants were less inclined to accept an assigned treatment strategy. For instance, if graft loss risk was increased from 1% to 50%, the probability of uptake of a treatment strategy for BKPyV infection was reduced from 87% to 3%. Graft loss is the predominant concern for patients, caregivers, and health professionals when deciding on the treatment for BKPyV infection, and should be included in intervention trials of BKPyV infection.

The association between caregiver burden, social capital, and family functioning among caregivers of older adults with PSD - A cross-sectional study.

This study aimed to explore the relationships between social capital, family functioning, and caregiver burden in caregivers of older adults with post-stroke dementia (PSD). A cross-sectional correlational study was conducted between November 2017 and April 2018 among 105 caregivers of older adults with PSD using a demographic questionnaire, the Social Capital Scale, Family APGAR Index (APGAR), and Caregiver Burden Inventory (CBI).An independent samples t-test was also utilized to compare caregiver burden based on demographic characteristics. Statistical analysis comprised Pearson correlation analysis and multiple regression analysis using SPSS version 22.0 to identify influencing factors. Significant negative correlations were found between caregiver burden and variables such as social capital (p < .001) and family functioning (p < .01). The results of the multivariate analysis revealed that social capital, physical condition, and duration of caregiving were the main influencing factors (β = 58.162, ΔR2 = 0.289, p < .001). These findings suggest that nurses should continue to prioritize the well-being of patients' families, and collaborative efforts should be made to establish care facilities that cater to both medical and social needs.

Supportive interventions for family caregivers of adults with mental illness: An integrative review

Supportive interventions for family caregivers of adults with mental illness: An integrative review

Does Social Support Alleviate the Caregiving Burden of Adult Children? Evidence from Chinese Long-Term Care Insurance Pilot Program

ABSTRACT In China, and many other developed nations, public long-term care insurance (LTCI) is a commonly adopted approach to meet long-term care needs, but its impact on the burden of family caregivers remains uncertain. This study investigated whether a parent having LTCI alleviates the caregiver burden for the adult child caregiver. Data derived from the 2011, 2013, and 2018 China Health and Retirement Longitudinal Study (N = 4595 adult child caregivers). Guided by the stress-appraisal model, Difference-in-Difference (DID) methods were used to investigate the spillover effects of LTCI on caregiver stressors and burden. The results show that having public LTCI in place in a location is associated with reduced caregiver burden among adult child caregivers through its effects on secondary stressors (wealth, health, and sleep problems) and hours of caregiving. Findings suggest that the LTCI is an effective form of social support for aiding family caregivers and alleviating their burden.

Internet usage buffers the effect of loneliness on subjective health among informal caregivers of older adults

ABSTRACT Informal caregivers of older adults usually suffer from loneliness, which makes them vulnerable to reduced health outcomes. This study attempted to explore whether internet usage mitigates the effects of loneliness on subjective health among informal caregivers of older adults. A sample of 1089 informal caregivers (mean age = 58.0 ± 15.7 years, 60.3% females) providing unpaid cares for older adults in the United States were investigated. Their loneliness, subjective health, and utilization of caregiving-related online resources were measured. Descriptive statistics and correlation analyses were conducted to summarize the sample’s characteristics and determine the relationships among the study variables, respectively. Finally, a multivariate regression analysis with an interaction term was performed to test the moderating effect of internet usage. Results indicated that loneliness was significantly negatively associated with subjective health. Furthermore, after controlling for demographic and caregiving-related factors, the moderating effect of internet usage on the link between loneliness and subjective health was significant, namely, the negative association between loneliness and subjective health was less pronounced at higher levels of internet usage. Hence, in addition to alleviating loneliness, providing caregiving-related online services and promoting positive utilization of resources on the internet may be potential intervention targets to improve informal caregivers’ health.

Is the Treatment Worse than the Disease?: Key Stakeholders’ Views about the Use of Psychiatric Electroceutical Interventions for Treatment-Resistant Depression

Psychiatric electroceutical interventions (PEIs) use electrical or magnetic stimulation to treat psychiatric conditions. For depression therapy, PEIs include both approved treatment modalities, such as electroconvulsive therapy (ECT) and repetitive transcranial magnetic stimulation (rTMS), and experimental neurotechnologies, such as deep brain stimulation (DBS) and adaptive brain implants (ABIs). We present results from a survey-based experiment in which members of four relevant stakeholder groups (psychiatrists, patients with depression, caregivers of adults with depression, and the general public) assessed whether treatment with one of four PEIs (ECT, rTMS, DBS, or ABIs) was better or worse than living with treatment-resistant depression (TRD) and then provided a narrative explanation for their assessment. Overall, the prevalence of many narrative themes differed substantially by stakeholder group—with psychiatrists typically offering different reasons for their assessment than non-clinicians—but much less so by PEI modality. A large majority of all participants viewed their assigned PEI as better than living with TRD, with their reasons being a mix of positive views about the treatment and negative views about TRD. The minority of all participants who viewed their assigned PEI as worse than living with TRD tended to express negative affect toward it as well as emphasize its riskiness, negative side effects, and, to a lesser extent, its invasiveness. The richness of these narrative explanations enabled us to put in context and add depth to key patterns seen in recent survey-based research on PEIs.

A First-Person Account of Caring for a Parent With Dysphagia.

Research has shown that caregiver burden is compounded by dysphagia experienced by the care recipient. However, little is known about the caregiver perception of the caregiving experience, highlighting both the positive and negative experiences. As such, the purpose of this clinical focus article was to provide a first-person account of an adult caregiver of an aging parent with dysphagia and relate their experiences to current literature to inform clinical practice. The caregiver provided a detailed account of her experiences caring for her father with dysphagia. Her account was analyzed to identify recurring themes in the literature regarding the caregiving experience and to identify gaps in dysphagia-related caregiver support. The caregiver's story is organized into seven main sections: (a) life before dysphagia, (b) dysphagia onset and diagnosis, (c) dysphagia management and support, (d) community support, (e) impact on family relationships, (f) social and emotional health, and (g) current perspectives on the caregiving experience. The challenges associated with caregiving clearly impact the caregiver's overall well-being, but she received abundant support from her family, community-based speech-language pathologist, and caregiver support groups. The caregiver's experiences, while not applicable to every caregiver caring for a loved one with dysphagia, can offer valuable insights to clinicians and other caregivers facing similar situations.

Mobile Phone Text Message Reminders to Improve Vaccination Uptake: A Systematic Review and Meta-Analysis.

Mobile phone text message reminders (MPTMRs) have been implemented globally to promote vaccination uptake and recall rates. This systematic review evaluated the effectiveness of MPTMRs on vaccination recall rates. We included randomized controlled trials of caregivers of children, adolescents, or adults who received MPTMRs for improving vaccine uptake and recall visits. We searched the Cochrane Central Register of Controlled Trials (CENTRAL), PubMed, and Scopus to identify relevant studies published up to 24 January 2024. We used Cochrane's Risk of Bias tool to assess the included studies and reported the results as risk ratios with 95% confidence intervals, using a random effects model. We identified 25 studies for inclusion. All studies were assessed as having a low risk of bias. The evidence supports MPTMRs for improving vaccination uptake compared to usual care (RR = 1.09 [95%CI: 1.06, 1.13], I2 = 76%). Intervention characteristics, country setting, country economic status, and vaccination type had no bearing on the effectiveness of the intervention. MPTMRs have a positive effect, albeit relatively small, on vaccination uptake. These findings may assist public health practitioners, policymakers, and vaccine researchers in evidence-based decision making that focuses on MPTMRs and their impact on vaccination coverage.

Developing a Policy Model to Support Family Caregivers of Dependent Older Adults in Bangkok

This article aims to present the situation of family caregivers of dependent older individuals in the Bangkok area and proposes a model policy to support them. This study used mixed methods with a multi-phase design. Based on 357 participants, the results indicate that family caregivers in Bangkok faced problems, with moderate levels (x ̅ = 2.51) in caring for older dependents and their roles as direct caregivers. Yet, they hold high expectations for support (x ̅ = 3.86). The proposed model comprises four components derived from exploratory factor analysis of quantitative data, supplemented by qualitative data from a case study involving five individuals, tested and assessed by Bangkok executives or representatives (totaling six individuals), along with seven practitioners supporting older adult caregivers. These components include establishing systems, mechanisms, rights, and welfare; supporting work and relaxation; creating all-inclusive care service units for dependent older individuals; and providing medical and public health services. Implementing local-level policies is crucial for supporting family caregivers, with the Department of Older Persons collaborating with civil society for integration and engagement. Through this collaboration, concrete forms of support for family caregivers of independent older individuals are expected to be established.

Measuring adolescent girls' agency.

The last decade has experienced a surge of interventions focused on improving adolescent girls' agency. Yet measuring adolescent girls' agency continues to be a challenge, limiting the ability to track impact. This study addresses this evidence gap by constructing and validating a multidimensional measure of agency among adolescent girls in Ethiopia. This study utilized cross-sectional data from 3033 in school adolescent girls aged 10-12 years and 15-17 years and their adult female caregivers collected as part of the Gender and Adolescent: Global Evidence study in 2017-2018 in Ethiopia. This study constructed a measure of agency among the sample and evaluated both known group and convergent validity of the scale. Twenty-two indicators across three domains (decision-making, voice, and mobility) were used to characterize adolescent girls' agency. The data was randomly divided into two halves for exploratory and confirmatory factor analyses separately. While six factors of agency emerged from the initial exploratory analysis, two factors (decision-making and mobility factors) defined adolescent girls' agency from the confirmatory factor analysis. Known-groups validity of the agency scale was confirmed-the scores on the two domains (decision-making and mobility) and the overall agency scale was higher for older girls compared to younger girls and for girls in urban households compared to those in rural households. Convergent validity of the scale was not confirmed. This study advances adolescent girls' agency measurement by providing a validated multidimensional measure that can be used to support future policy and research.

Experiences of Family Caregivers of Older Adults With Dementia in Korea During the COVID-19 Pandemic: A Qualitative Analysis.

To explore the experiences of family caregivers of older adults with dementia in Korea during the coronavirus disease 2019 pandemic. In-depth interviews were conducted with eight family caregivers of older adults with dementia from September to October 2021. Collected data were analyzed using Giorgi's phenomenological methodology. Four themes were derived: A Rough Journey With Worry, A Desolate Life in a Disconnected World, Frustration Due to Health Deterioration, and Looking Toward the Future Despite Heavy Responsibility. This study is meaningful as it increases our understanding of the experiences and needs of individuals with dementia and their family caregivers, and results can assist in finding ways to help them cope with their difficulties during future pandemic situations. [Journal of Gerontological Nursing, 50(10), 42-48.].

Nurse Telephone Support for Caregivers of Older Adults at Hospital Discharge

Informal caregivers who provide home-based care frequently experience stress and burden that adversely affect their health-related quality of life (HRQOL). To evaluate the efficacy of the Further Enabling Care at Home (FECH+) program for the HRQOL of caregivers of older adults discharged home from the hospital. This multicenter, parallel, 2-group randomized clinical trial, with blinded baseline and outcome measurements, was conducted at 3 hospitals in 2 states in Australia. Recruitment took place between August 2020 and July 2022, and follow-up was performed for 12 months after hospital discharge. Participants were dyads of caregivers and patients. Eligible caregivers were aged 18 years or older who provided informal home-based care at least weekly for a patient aged 70 years or older. Caregivers were enrolled when their patient was discharged from the hospital. Dyads were randomly assigned to either the intervention or control group. Data analysis followed an intention-to-treat approach. Caregivers in the intervention group received the FECH+ program, structured nurse support of 6 telephone calls over 6 months after the patient's discharge plus usual discharge care. Caregivers in the control group received usual care alone. Primary outcome was caregivers' HRQOL 6 months after discharge, which was measured using the Assessment of Quality of Life 8-Dimension (AQOL-8D). Secondary outcomes were caregivers' HRQOL 12 months after discharge as well as preparedness to care (measured using the Preparedness for Caregiving Scale), self-efficacy (measured using the Caregiver Inventory), and levels of strain and distress (measured using the Family Appraisal of Caregiving Questionnaire) at 6 and 12 months after discharge. Baseline and outcome measurements were administered by telephone at 3, 6, and 12 months after discharge. A total of 547 dyads (caregivers: 405 females [74.0%], mean [SD] age, 64.50 [12.82] years; patients: 296 females [54.1%], mean [SD] age, 83.16 [7.04] years for the intervention group and 83.45 [7.20] years for the control group) were included in the intention-to-treat analysis. There was no significant difference in caregivers' HRQOL between the 2 groups at the primary time point of 6 months (difference in AQOL-8D score, 0.01; 95% CI, -0.02 to 0.03; P = .62) after hospital discharge. In this randomized clinical trial, the FECH+ program-a nurse telephone support intervention for caregivers of older adults after hospital discharge-did not significantly improve caregivers' HRQOL at 6 months after discharge compared with usual care. Additional examination is warranted into improving caregivers' HRQOL at the time of their patient's hospital discharge. Australian New Zealand Clinical Trials Registry Identifier: ACTRN12620000060943.

Healthcare system navigation difficulties among informal caregivers of older adults: a logistic regression analysis of social capital, caregiving support and utilization factors

BackgroundInformal caregivers of older adults play a vital role in improving the degree to which older adults access community and healthcare services in a seamless and timely manner. They are fulfilling important navigation and support roles for their older care recipients. However, there is still little knowledge of the most significant facilitators and barriers to effective and efficient system navigation among caregivers. This paper aims to fill these knowledge gaps through investigation of the key factors (i.e., social capital/cohesion, caregiving supports, and utilization factors) affecting navigation difficulties faced by informal caregivers of older adults.MethodsThe Behavioural-Ecological Framework of Healthcare Access and Navigation (BEAN) model is used to frame the study. Using the General Social Survey on Caregiving and Care Receiving 2018, we analyzed 2,733 informal caregivers whose primary care recipients were aged 65 or older. Hierarchical logistic regression was conducted to identify the relationship between system navigation difficulties among informal caregivers and four sequentially ordered blocks of predictors: (1) sociodemographic (2), social capital/cohesion (3), caregiving supports, and (4) healthcare demand.ResultsThe fully adjusted model showed that the probability of reporting navigation difficulties was lower for caregivers with social capital/cohesion compared to those without social capital/cohesion. In comparison, the probability of reporting navigation difficulties was higher among caregivers with caregiving support and among caregivers whose care receivers use a higher amount of health service use. Several sociodemographic covariates were also identified.ConclusionOur findings support certain aspects of the BEAN model. This study extends our understanding of potential facilitators and barriers that informal caregivers of older adults face while navigating complex community and health systems. There is a need to implement coordinated schemes and health policies especially for older adults with mental/neurological issues to address the challenges of their caregivers given the specific vulnerability identified in this study. The need for further research using different approaches to examine the disproportionate impact of COVID-19 on caregivers’ system navigation experience is crucial.