Caregiver Psychological Distress Research Articles

A cross-sectional study on spouse and parent differences in caregiving experiences of people living with schizophrenia in rural China

BackgroundConflicting evidence exists on whether parent or spouse caregivers experience better outcomes when caring for family members with schizophrenia. The current study aims to examine relative caregiving experiences and impacts of spouse and parent caregivers for people living with schizophrenia (PLS) in China.MethodsA cross-sectional study was conducted in a sample of 264 community-dwelling primary family caregivers of PLS. Face-to-face interviews were conducted to collect information on family caregiving activities; negative caregiving impacts including objective and subjective burden, and caregiver psychological distress such as depression and anxiety; positive caregiving impacts including caregiving rewarding feelings, and family functioning for spouse and parent caregivers.ResultsBoth types of caregivers report engaging in similar caregiving activities and report comparable levels of objective burden. However, parent caregivers report significantly higher subjective burden than spouse caregivers (b = 7.94, 95%CI:2.08, 13.80, P < 0.01), which is also reflected in significantly higher depression (b = 3.88, 95%CI:1.35, 6.41, P < 0.01) and anxiety (b = 2.53, 95%CI: 0.22, 4.84, P < 0.05), and lower family functioning (b = − 1.71, 95%CI: − 2.73, − 0.49, P < 0.01). Despite these differences, both groups of caregivers report comparable rewarding feelings about caregiving.ConclusionsOur findings have implications for family caregivers globally, but especially for countries that adhere to Confucian cultural values and provide guidance for future family intervention programs. Such programs may do well to incorporate cultural values and beliefs in understanding caregiving and kinship family dynamics so as to support family caregivers, and in particular, the specific vulnerabilities of parent caregivers.

The Role of Negative Affectivity in Concurrent Relations Between Caregiver Psychological Distress and Social-Emotional Difficulties in Infants With Early Signs of Autism.

Recent evidence suggests the link between caregiver psychological distress and offspring social-emotional difficulties may be accounted for by offspring temperament characteristics. However, existing studies have only focused on neurotypical children; thus, the current study sought to provide an initial examination of this process among children with varying levels of early autism features. Participants included 103 infants aged 9-16 months (M = 12.39, SD = 1.97; 68% male) and their primary caregiver (96% mothers) referred to a larger study by community healthcare professionals. We utilized caregiver-reported measures of psychological distress (Depression Anxiety Stress Scales), infant temperament (Infant Behavior Questionnaire-Revised) and internalizing and externalizing symptoms (Infant-Toddler Social and Emotional Assessment) and administered the Autism Observation Schedule for Infants (AOSI) at an assessment visit to quantify autism features. Infant negative affectivity was found to mediate positive concurrent relations between caregiver psychological distress and infant internalizing and externalizing symptoms, irrespective of the infants' AOSI score. While preliminary and cross-sectional, these results replicate and extend previous findings suggesting that the pathway from caregiver psychological distress to negative affectivity to social-emotional difficulties might also be apparent among infants with varying levels of autism features. More rigorous tests of causal effects await future longitudinal investigation. LAY SUMMARY: Offspring of caregivers experiencing psychological distress (i.e., symptoms of depression, anxiety, and/or stress) may themselves be at increased risk of poor mental health outcomes. Several previous studies conducted with neurotypical children suggest that this link from caregiver-to-child may be facilitated by children's temperament qualities. This study was a preliminary cross-sectional exploration of these relationships in infants with features of autism. We found that infants' elevated negative emotions were involved in the relation between caregiver heightened psychological distress and children's mental health difficulties, consistent with neurotypical development. Autism Res 2020, 13: 1349-1357. © 2020 International Society for Autism Research, Wiley Periodicals, Inc.

Substance use among HIV-infected adolescents in Uganda: rates and association with potential risks and outcome factors

ABSTRACT This article sets out to investigate alcohol and substance use (ASU) among adolescents living with HIV (ALWH) in the sub-Saharan African setting of Uganda. A cross-sectional analysis of the records of 479 adolescents (aged between 12and 17 years) attending the study, “Mental health among HIV infected CHildren and Adolescents in KAmpala and Masaka, Uganda (the CHAKA study)” was undertaken. ASU was assessed through both youth self-report and caregiver report using the Diagnostic and Statistical Manual of Mental Disorders-5 referenced instruments, the Youth Inventory-4R and the Child and Adolescent Symptom Inventory-5 (CASI-5). Rates and association with potential risk and outcome factors were investigated using logistic regression models. The rate of ASU was 29/484 (5.9%) with the most frequently reported ASU being alcohol 22/484 (4.3%) and marijuana 10/484 (2.1%). Functional impairment secondary to ASU was reported by 10/484 (2.1%) of the youth. ASU was significantly associated with urban residence, caregiver psychological distress and the psychiatric diagnosis of post-traumatic stress disorder. On associations with negative outcomes, ASU was significantly associated with only “ever had sex”. Health care for ALWH in sub-Saharan Africa should include ASU prevention and management strategies.

Multimodal Psychosocial Intervention for Caregivers of Patients Undergoing Hematopoietic Stem Cell Transplantation (HCT): A Randomized Clinical Trial

Background Caregivers (i.e., family and friends) of patients undergoing HCT experience immense caregiving burden during HCT. Multimodal interventions to address the needs of caregivers prior to, during, and after HCT are lacking. Methods We conducted a randomized trial of a multimodal psychosocial intervention (BMT-CARE) for caregivers of patients undergoing autologous and allogeneic HCT at Massachusetts General Hospital. Caregivers were randomly assigned to BMT-CARE or usual care. BMT-CARE was tailored to the HCT trajectory and integrated treatment-related education and self-care with cognitive-behavioral skills and caregiving-specific strategies to promote coping. Caregivers assigned to BMT-CARE met with a trained interventionist in-person, via telephone or videoconferencing for six sessions starting prior to HCT and up to day+60 post-HCT. We assessed Caregiver quality of life (QOL; CareGiver-Oncology-Questionnaire), caregiving burden (Caregiver Reaction Assessment), psychological distress (Hospital Anxiety and Depression Scale), self-efficacy (Cancer Self-Efficacy Scale-Transplant), and coping (Measures of Current Status) at baseline and 60 days post-HCT. We assessed the preliminary efficacy of BMT-CARE for improving caregiver-reported outcomes at 60 days post-HCT using analysis of covariance adjusting for baseline criterion values. We conducted causal mediation analyses to examine whether changes in self-efficacy or coping mediated the effect of the intervention on caregiver QOL and psychological distress at 60 days post-HCT. Results We enrolled 72.5% (100/138) of eligible caregivers. Caregivers randomized to BMT-CARE reported improved QOL (adjusted means: 81.22 [95%CI 77.69, 84.74] vs. 70.96 [95%CI 67.56, 74.36], P Conclusions A brief multimodal psychosocial intervention tailored for caregivers of HCT recipients has promising efficacy for improving QOL, mood, coping, and self-efficacy while reducing caregiving burden during the acute HCT period. Improvements in coping skills and self-efficacy partially account for the effect of BMT-CARE on caregiver QOL and psychological distress.

Optimism as a key to improving mental health in family caregivers of people living with Alzheimer’s disease

Objective: The aim of the present work was to study the serial multiple mediating role of optimism, perceived social support and subjective burden in the relationship between objective burden and psychological distress in caregivers of people with Alzheimer´s Disease (AD).Method: One hundred and forty family caregivers of people living with AD were recruited from randomly selected Alzheimer Association Centres. They answered the General Health Questionnaire (GHQ), the Life Orientation Test-Revised (LOT-R), the Functional Social Support Questionnaire (DUKE.UNC), the Zarit Burden Interview (ZBI) and questions relating to gender, age and the amount of time spent on daily caregiving.Results: Results indicated that objective burden and subjective burden were both high in these caregivers. Optimism mediated on psychological distress through social support and through subjective burden with a full mediation role. When comparisons between indirect effects were performed, optimism was the mediator with the greatest effect between objective burden and psychological distress.Conclusion: This study highlights the indirect role of optimism and the advantages that interventions in optimism training in the early stages of the person with AD could produce. Thus, alleviating subjective burden and increasing perceived social support, which would lead to an improvement in the mental health of family caregivers of people with AD.

The Relationship Between Caregiver Reactions and Psychological Distress in Family Caregivers of Patients With Heart Failure.

Providing care often causes negative reactions and psychological distress in family caregivers of patients with heart failure. How these 2 constructs are related has not been fully explored. The aims of this study were to describe caregiver reactions to caregiving and psychological distress and to determine the associations between caregiver reactions to caregiving and psychological distress in family caregivers of patients with heart failure. In this secondary analysis of a cross-sectional study, the sample included 231 patients and their family caregivers. The Chinese version of the Hospital Anxiety and Depression Scale was used to assess psychological distress (ie, symptoms of anxiety and depression), and the Caregiver Reaction Assessment was used to measure both negative and positive caregiver reactions to caregiving, including financial problems, impact on schedule, health problems, lack of family support, and self-esteem. Of the participants, 15.2% and 25.5% of caregivers reported symptoms of depression and anxiety, respectively. Impact on schedule was the most common caregiver reaction, followed by financial problems. Impact on schedule was related to both the caregivers' symptoms of depression (odds ratio [OR], 1.705; P = .001) and anxiety (OR, 1.306; P = .035), whereas financial problems were only related to symptoms of anxiety (OR, 1.273; P = .011). The findings suggest that interventions for reducing the negative impact on schedule of caregiving and helping to solve the caregivers' financial concerns might help to relieve their symptoms of depression and anxiety.

Psychological Impact of Quarantine on Caregivers at a Children's Hospital for Contact with Case of COVID-19.

Quarantine often provokes negative psychological consequences. Thus, we aimed to identify the psychological and behavioral responses and stressors of caregivers quarantined with young patients after a close contact to a coronavirus disease 2019 case at a children's hospital. More than 90% of the caregivers reported feelings of worry and nervousness, while some of them reported suicidal ideations (4.2%), and/or homicidal ideations (1.4%). Fear of infection of the patient (91.7%) and/or oneself (86.1%) were most frequently reported stressors. A multidisciplinary team including infection control team, pediatrician, psychiatrist, nursing staff and legal department provided supplies and services to reduce caregiver's psychological distress. Psychotropic medication was needed in five (6.9%), one of whom was admitted to the psychiatry department due to suicidality. Quarantine at a children's hospital makes notable psychological impacts on the caregivers and a multidisciplinary approach is required.

Significant Burden and Psychological Distress Among Caregivers of Children With Nephrotic Syndrome: A Cross-Sectional Study.

Background:Childhood nephrotic syndrome (NS) follows a chronic course in most children. However, little is known about the psychosocial burden of NS on the caregivers despite evidence that caregiver burden or impairment in their well-being may alter the outcome of chronic childhood illnesses.Objectives:To determine the frequency and predictors of significant caregiver burden and psychological distress among caregivers of children with NS.Design:A cross-sectional study.Setting:Two pediatric nephrology clinics in Lagos, Nigeria.Patients:We included primary caregivers of children with idiopathic NS for at least 6 months.Measurements:The primary outcomes were psychological distress and significant caregiver burden among caregivers.Methods:We interviewed caregivers using the 12-item General Health Questionnaire (GHQ-12) and the 6-item Zarit Burden Interview (ZBI-6). The GHQ-12 scores ≥ 3 and ZBI-6 scores ≥ 6 indicated psychological distress and significant caregiver burden, respectively.Results:The caregivers were mostly mothers (77.9%) and married (92.4%), whereas the children (n = 172) were mainly male (65.1%). Most of the children (n = 152; 88.4%) had steroid-sensitive NS including 24 (14%) children with frequent relapses or steroid dependence and 20 (11.6%) with steroid-resistant NS. Of the 172 caregivers, 53 (30.8%) and 30 (17.4%) reported psychological distress and significant burden, respectively. Caregivers of children in relapse had adjusted an odds ratio (aOR) with 95% confidence interval (CI) of 2.45 (1.05-5.67) and 3.30 (1.22-8.92) of psychological distress and significant caregiver burden, respectively. Furthermore, caregivers of male children and those who needed help paying for health care had an aOR of 4.61 (1.34-15.68) and 3.06 (1.06-8.87) of significant caregiver burden, respectively.Limitations:The study was limited by its cross-sectional design and the use of generic rather than disease-specific instruments.Conclusion:One in every 6 caregivers of children with idiopathic NS reported significant caregiver burden, and it was associated with psychological distress. Our findings underscore the need for psychosocial support for caregivers of children with NS, especially those with identifiable vulnerability.

The Role of Self-Compassion in the Relationship between Post-Traumatic Growth and Psychological Distress in Caregivers of Children with Autism

Caregivers of children with Autism Spectrum Disorder (ASD) may experience varying degrees of both psychopathological symptoms and enriched personal growth. The mechanisms underlying these associations are not well understood. The aim of the current study was to explore the relationships between post-traumatic growth (PTG) and psychological distress, namely depression, anxiety and stress among caregivers of autistic children in China, with self-compassion as a potential relating factor. One hundred and twenty-one caregivers of children with ASD, ranged in age from 26 to 53, completed the questionnaires. The instruments utilized include a socio demographic questionnaire, Posttraumatic Growth Inventory (PTGI), the Chinese version of the Short Form Depression Anxiety Stress Scales (DASS-21) and the Chinese version of the Short Form Self-Compassion Scale (SCS-SF). The results showed that there was no significant linear or curvilinear relationship between PTG and psychological distress. PTG indirectly correlated with psychological distress through self-compassion. The positive and negative components of self-compassion uniquely correlated with PTG and psychological distress respectively. The findings of this study suggested that PTG may play a protective role of mental health among Chinese caregivers of children with ASD through enhancing self-compassion. More importantly, the current study suggested that self-compassion should be better conceptualized in order to move the relevant research forward.

Psychological distress in partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: what’s the role of care demands and perceived control?

ABSTRACTCaregivers of Amyotrophic Lateral Sclerosis (ALS) and Progressive Muscular Atrophy (PMA) patients often experience psychological distress. Yet, it is unclear which factors explain the variance in psychological distress. This study seeks to evaluate how care demands and perceived control over caregiving influence psychological distress using moderation and mediation analysis. Data were collected as part of a RCT and 148 partners of patients with ALS or PMA were included. Psychological distress was assessed using the Hospital Anxiety and Depression Scale. Care demands were operationalized as physical functioning (Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised) and behavioural changes of the patient (Amyotrophic Lateral Sclerosis-Frontotemporal Dementia-Questionnaire). Perceived control over caregiving was assessed using items adapted from the Job Content Questionnaire. Results showed that more behavioural changes and lower perceived control over caregiving were associated with higher levels of psychological distress in caregivers. Patients’ physical functioning was not significantly related to caregivers’ psychological distress. No moderation or mediation effects were found of perceived control over caregiving on the relationship between demand and psychological distress. Monitoring, psychoeducation and caregiver support with regard to behavioural changes in patients, seem to be important for the wellbeing of caregivers. Caregivers’ perceived control might be a target for future interventions.

Exploring the Moderating Role of Benefit Finding on the Relationship Between Child Problematic Behaviours and Psychological Distress in Caregivers of Children with ASD.

Caregivers of children with ASD often find benefits associated with their caregiving role, and benefit finding predicts lower distress. Child problematic behaviours (CPB), which positively predict caregivers' distress, are perceived to be being less problematic, or more manageable, by caregivers who find benefits. Benefit finding therefore might mitigate the negative psychological impact of CPB. A sample of n = 158 caregivers of children with ASD completed an online survey assessing benefit finding, CPB, and psychological distress. CPB positively, and benefit finding negatively, predicted caregivers' distress. Moderation effects however were not observed. Findings implicate increased CPB and lower benefit finding as risk factors for caregivers' psychological distress. Findings provide clearly definable targets for intervention.

Depression and anxiety symptoms in bereaved caregivers of patients with advanced cancer.

17 Background: Caregivers of patients with advanced cancer experience substantial caregiving burden and psychological distress during the illness course. However, data on depression and anxiety symptoms in bereaved caregivers and factors associated with their psychological distress are lacking. Methods: We conducted a secondary analysis of 168 caregivers enrolled in a randomized trial of early palliative care integrated with oncology care versus oncology care alone for patients newly-diagnosed with incurable lung and non-colorectal gastrointestinal cancers and their caregivers who completed bereavement assessments at 3 months after their loved one’s death. We used the Hospital Anxiety and Depression Scale (HADS) to assess patients’ and caregivers’ depression and anxiety symptoms at baseline within 8 weeks of diagnosis, and at 3-4 months after the patient’s death (for caregivers). We asked caregivers to rate patient’s physical and psychological distress in the last week of life on a 10-point scale. We used linear regression adjusting for randomization and cancer type to explore associations between patient and caregiver factors and bereaved caregivers’ depression and anxiety. Results: 30.4% (51/168) and 43.4% (73/168) of bereaved caregivers reported clinically significant depression and anxiety symptoms, respectively. Younger patient age (B = -0.06, P = 0.041), higher patient baseline anxiety (B = 0.28, P = 0.002), and caregiver rating of worse physical (B = 0.28, P = 0.035) and psychological (B = 0.41, P &lt; 0.001) distress experienced by the patient at the end of life (EOL) were associated with worse depression symptoms in bereaved caregivers. Only caregiver factors, including age (B = -0.07, P = 0.004), female sex (B = 1.60, P = 0.024), and rating of worse psychological distress experienced by the patient at the EOL (B = 0.42, P &lt; 0.001) were associated with worse bereaved caregivers’ anxiety symptoms. Conclusions: Bereaved caregivers of patients with advanced cancer experience substantial psychological distress which is associated with their perceptions of their loved one’s distress at the EOL. Interventions to optimize EOL care for patients and reduce bereaved caregivers’ psychological distress are needed.

The Modified Caregiver Strain Index: Portuguese version.

The Modified Caregiver Strain Index is a widely used tool to screen for caregiver strain in family caregivers. This study presents the Portuguese version of the Modified Caregiver Strain Index and explores its psychometric properties in a sample of 347 informal caregivers of older dependent individuals. Factor analysis revealed a two-factor structure and indicated satisfactory internal consistency. Criterion-related validity was supported by positive significant correlations with the emotional health of the caregiver (psychological distress). The findings show evidence of reliability and validity of the Portuguese version of the Modified Caregiver Strain Index encouraging its use in clinical and research fields.

Older adult caregivers of their spouses with acquired late-life disability: examining the effectiveness of an internet-based meditation program in mitigating stress and promoting wellbeing

ABSTRACTThis article reports a study examining the impact of an internet-based meditation program in mitigating stress and promoting wellbeing among older adult caregivers of their spouses with acquired late-life disability in Central Europe and South Asia compared to leisure. Posttest (T2) the meditation cohort exhibited lower caregiver burden and psychological distress, improved responses to care challenges, and greater wellbeing compared to the leisure group. South Asians, women, middle class, college educated, whose spouses had locomotor and sensory disabilities and lived as a couple alone, reported lesser caregiving burden, improved responses to care challenges, lesser distress and greater wellbeing at T2. Meditation lessons attended and self-practice mediated the relationship between demographic predictors and outcomes and self-practice had the largest positive impact. Meditation influenced certain aspects of caregiver wellbeing more such as self-care and certain specific aspects of wellbeing. Internet-based caregiver interventions are evidence as useful for social work with older caregivers.

Early Adolescent Skills for Emotions (EASE) intervention for the treatment of psychological distress in adolescents: study protocol for randomised controlled trials in Lebanon and Jordan

BackgroundThere are significant barriers to providing accessible, quality mental health care for young adolescents affected by adversity. In an attempt to overcome this, the World Health Organization (WHO) has developed the Early Adolescent Skills for Emotions (EASE) psychological intervention for young adolescents with internalising problems. EASE is group-based (seven sessions for adolescents, three sessions for their caregivers) and can be delivered by non-specialist providers. This paper outlines the study protocols for two trials of EASE in the Middle East - one in Lebanon and one in Jordan.MethodsWe will conduct two, single-blind, two-arm, individually randomised group treatment trials in Lebanon and Jordan, with at least 445 young adolescents per trial. Adolescents will be screened eligible for the trial if they demonstrate levels of psychological distress indicative of internalizing problems requiring treatment. Participants will be randomly assigned to receive the EASE intervention, or enhanced usual care (one home-visit psychoeducation session). The primary outcome is reduction in overall child-reported psychological distress over time, with 3 months post-treatment as the primary end point. Secondary child-reported outcomes include post-traumatic stress symptoms, depression symptoms, daily functioning, and wellbeing. Secondary caregiver-reported outcomes include parenting style, overall child distress, and caregiver psychological distress. Coping strategy use will be explored as a mediator of treatment effects in Lebanon, and relevant moderators of treatment effects will be explored.DiscussionThese trials will provide the first assessments of the effectiveness of the EASE intervention for use in the Middle East, with important implications for the use of low-intensity, non-specialist interventions for this age range.Trial registrationLebanon: ISRCTN75375136. Registered on 11 March 2019.Jordan: Australia New Zealand Clinical Trials Registry, ACTRN12619000341123. Registered on 5 March 2019 (https://www.anzctr.org.au/)

Agreement and Discrepancy on Emotional and Behavioral Problems Between Caregivers and HIV-Infected Children and Adolescents From Uganda.

Background: HIV-infected children and adolescents (CA-HIV) face significant mental health challenges related to a broad range of biological and psychosocial factors. Data are scarce on the agreement and discrepancy between caregivers and CA-HIV regarding emotional and behavioral problems (EBPs) in CA-HIV. Objectives: We determined agreement between self- versus caregiver- reported EBPs and describe factors associated with informant discrepancy among caregiver–youth dyads who participated in the “Mental health among HIV-infected CHildren and Adolescents in KAmpala and Masaka, Uganda” (CHAKA) study. Methods: In a cross-sectional sample, caregiver-reported EBPs were assessed with the Child and Adolescent Symptom Inventory-5 (CASI-5), and self-reported problems were evaluated with the Youth Inventory-4 (YI-4) in 469 adolescents aged 12–17 years and the Child Inventory-4 (CI-4) in 493 children aged 8–11 years. Adolescents were questioned about experiences of HIV stigma. Caregiver psychological distress was assessed with the Self-Reporting Questionnaire (SRQ-20). Linear regression models were applied to identify variables associated with discrepancy scores. Results: Self-reported emotional problems (EPs) were present in 28.8% of adolescents and 36.9% of children, and 14.5% of adolescents self-reported behavioral problems (BPs). There was only a modest correlation (r ≤ 0.29) between caregiver- and CA-HIV-reported EBPs, with caregivers reporting more EPs whereas adolescents reported more BPs. Informant discrepancy between adolescents and caregivers for BPs was associated with adolescent age and caregiver’s employment and HIV status. Among adolescents, EP discrepancy scores were associated with adolescent’s WHO HIV clinical stage, caregiver level of education, and caregivers caring for other children. Among children, EP discrepancy scores were associated with child and caregiver age, caregiver level of education, and caregiver self-rated health status. HIV stigma and caregiver psychological distress were also associated with discrepancy, such that adolescents who experienced HIV stigma rated their EPs as more severe than their caregivers did and caregivers with increased psychological distress rated EBPs as more severe than CA-HIV self-rated. Conclusions: EBPs are frequently endorsed by CA-HIV, and agreement between informants is modest. Informant discrepancy is related to unique psychosocial and HIV-related factors. Multi-informant reports enhance the evaluation of CA-HIV and informant discrepancies can provide additional insights into the mental health of CA-HIV.

Caregiver experiences of racism are associated with adverse health outcomes for their children: a cross-sectional analysis of data from the New Zealand Health Survey

ABSTRACT The study aimed to investigate the association between caregiver experiences of racial discrimination and physical and emotional health outcomes for their children and to explore potential pathway variables in this relation. We analysed data from two instances of the New Zealand Health Survey that provide nationally representative data for children and adults, with high response rates for each of the major ethnic groupings (Indigenous Māori, Pacific, Asian, and European/Other). Questionnaires from the primary caregiver and their child (5 to 14 years) were linked to create n = 2,958 child-primary caregiver dyads in the 2006/07 Survey and n = 2,632 dyads in the 2011/12 Survey. Children whose caregivers reported any experience of racial discrimination had poorer mental health, self-esteem, and behaviour scores on the CHQ PF-28 scale, even after adjustment for caregiver sociodemographic variables. Multivariable models identified a worsening in child emotional health as the number of reported racism experiences increased. Caregiver experiences of racism were not associated with medicated asthma in their children. Multivariable models suggest that caregiver psychological distress may be a pathway linking vicarious racism to poorer child emotional health.

Helping Hispanic Family Caregivers of Persons With Dementia "Get the Picture" About Health Status Through Tailored Infographics.

Background and ObjectivesCaregivers need to understand their health status and the disabilities of the care recipient to engage in effective health management. Infographics tailored with personal health data are a promising approach to facilitating comprehension, particularly for individuals with low health literacy/limited English proficiency. Such approaches may be especially important for dementia caregivers given the high care burden.Research Design and MethodsGuided by the Health Belief Model and the Data-Frame Theory of Sensemaking, we conducted iterative participatory design sessions with Hispanic family caregivers (N = 16) of persons with dementia. We created multiple prototype infographic designs to display scores on validated instruments of topics such as caregiving burden, overall health, and psychological distress. We retained and refined designs participants judged to be easily comprehensible. Analysis focused on identifying the graphical elements that contributed to the comprehensibility of designs and on evaluating participants’ reactions to the designs.ResultsSuccessful infographics used intuitive scaling consistent with caregivers’ perspective of dementia as inevitable decline. Participants reacted to infographics by describing the self-management actions they would take to address the health issue at hand.Discussion and ImplicationsTailored infographics supported caregivers’ comprehension of their health status and served as cues to engaging in self-management. As such, they should be presented in the context of informational support that can facilitate selection of appropriate next steps. This can mitigate the potential mental and physical health consequences of caregiving and enable caregivers to continue to care for their relatives with dementia with less damage to their own well-being.

Depression and anxiety symptoms in bereaved caregivers of patients with advanced cancer.

11623 Background: Caregivers of patients with advanced cancer experience substantial caregiving burden and psychological distress during the illness course. However, data on depression and anxiety symptoms in bereaved caregivers and factors associated with their psychological distress are lacking. Methods: We conducted a secondary analysis of 168 caregivers enrolled in a randomized trial of early palliative care integrated with oncology care versus oncology care alone for patients newly-diagnosed with incurable lung and non-colorectal gastrointestinal cancers and their caregivers who completed bereavement assessments at 3 months after their loved one’s death. We used the Hospital Anxiety and Depression Scale (HADS) to assess patients’ and caregivers’ depression and anxiety symptoms at baseline within 8 weeks of diagnosis, and at 3-4 months after the patient’s death (for caregivers). We asked caregivers to rate patient’s physical and psychological distress in the last week of life on a 10-point scale. We used linear regression adjusting for randomization and cancer type to explore associations between patient and caregiver factors and bereaved caregivers’ depression and anxiety. Results: 30.4% (51/168) and 43.4% (73/168) of bereaved caregivers reported clinically significant depression and anxiety symptoms, respectively. Younger patient age (B = -0.06, P = 0.041), higher patient baseline anxiety (B = 0.28, P = 0.002), and caregiver rating of worse physical (B = 0.28, P = 0.035) and psychological (B = 0.41, P &lt; 0.001) distress experienced by the patient at the end of life (EOL) were associated with worse depression symptoms in bereaved caregivers. Only caregiver factors, including age (B = -0.07, P = 0.004), female sex (B = 1.60, P = 0.024), and rating of worse psychological distress experienced by the patient at the EOL (B = 0.42, P &lt; 0.001) were associated with worse bereaved caregivers’ anxiety symptoms. Conclusions: Bereaved caregivers of patients with advanced cancer experience substantial psychological distress which is associated with their perceptions of their loved one’s distress at the EOL. Interventions to optimize EOL care for patients and reduce bereaved caregivers’ psychological distress are needed.

The Functional Ability of MCI and Alzheimer's Patients Predicts Caregiver Burden.

Sixty patients and their caregivers participated in this study. Patients completed activities of daily living tasks and several neuropsychological tests assessing memory, abstract reasoning, and language. Caregivers completed self-report measures assessing caregiver burden and psychological distress. Results revealed that the mAD caregivers endorsed greater physical burden and feelings of missing out on life compared to MCI caregivers. The mAD caregivers indicated greater depression and anxiety relative to MCI caregivers. Stepwise regression found that fewer patient neuropsychological scores predicted caregiver burden, as compared to patients' daily functioning. Overall, mAD displayed more severe types of burden and psychological distress relative to MCI caregivers and patients' daily functional abilities better predicated caregivers' burden and psychological distress than patients' neuropsychological functioning.