Caregiver Distress Research Articles

Changing practice to improve quality of life in glioma.

As treatment for glioma advances, with an attendant improvement in length of patient survival, the quality of that survival has rightly become an increasingly important patient-centered metric, and health-related quality of life (HRQOL) an important outcome measure. HRQOL is a self-assessed, multidimensional concept encompassing the physical, emotional, and social components of quality of life associated with illness and its treatment. Neurosurgeons caring for patients with gliomas should be aware of the latest research on HRQOL to understand mechanisms by which it can be improved. Neurosurgical outcomes related to surgical complications and neurological deficits can be important determinants of HRQOL and are well understood by neurosurgeons. However, an understanding of more general or global determinants of HRQOL not commonly addressed in the clinic, and implementation of the attendant evidence-based interventions to address them, would be transformative. The authors explore HRQOL determinants related to patient-, social-, tumor-, and treatment-related factors, with a particular emphasis on the strongest determinants, fatigue, sleep disturbance, anxiety, depression, neurocognitive dysfunction, caregiver distress, and end-of-life concerns. Evidence-based interventions are reviewed, including fatigue management, cognitive rehabilitation, insomnia interventions exercise, caregiver training, palliative care, and an overall multidisciplinary team approach. Lastly, features of a program are outlined that would embed HRQOL in neurosurgical care to the benefit of both patients and staff.

Higher Discharge GCS Score is Associated with Both Survival and Long-term Functional Recovery in Patients with Clinically Defined Diffuse Axonal Injury

Abstract Background: Diffuse axonal injury (DAI) refers to widespread axonal damage due to traumatic brain injury. There are very few studies that have specifically looked at outcomes in patients with DAI, where the injury is not associated with accompanying focal lesions (such as haematomas and other mass lesions) or ischaemic brain injury. In this study, we assessed factors that predict mortality and long-term functional outcome of patients with DAI who underwent treatment and rehabilitation in a tertiary care hospital in South India. Methodology: Long-term outcome and neuropsychiatric sequelae were assessed in 160 patients with DAI, who underwent rehabilitation and were on regular follow-up for a median duration of 5 years (interquartile range = 3–6). Cox proportional hazards and logistic regression models were used to determine factors associated with mortality and functional outcome (Glasgow Outcome Scale-Extended [GOSE], Mayo-Portland Adaptability Inventory [MPAI] and Neuropsychiatric Inventory [NPI]). Results: Majority of the 160 patients included in this study were young males (92%) who presented with severe head injury (Glasgow Coma Scale [GCS] score of 5.6 ± 2.1). At the time of follow-up, 94 (58.75%) patients were alive, while 66 (41.25%) were dead. Patients who were alive at the time of follow-up were significantly younger, had higher GCS score and lower Rotterdam computed tomography (CT) grade at presentation compared to those who died. Compromised airway requiring tracheostomy (χ 2 = 21.3; P < 0.001) and abnormal pupil reactivity (χ2 = 30.2, P < 0.001) were significantly associated with mortality. GCS score at discharge was the single most important determinant of mortality (hazard ratio = 0.802, P < 0.001). Among those who were alive, majority (73.4%) had good functional recovery (GOSE score 8). GCS scores (at admission and that at discharge) and Rotterdam CT score independently and significantly predicted MPAI, NPI and caregiver distress scores. Among them, GCS score at discharge was the strongest predictor. In-hospital improvement in GCS correlated with GOSE but not with MPAI and NPI. Conclusion: Higher GCS scores at discharge were strongly associated with both survival and functional recovery in patients with DAI.

CALM & CARE: A CHILD-CENTRED DIGITAL THERAPY PLATFORM FOR MENTAL HEALTH

Mental health, as critical as physical well-being, has gained significant importance during the COVID19 pandemic. Moreover, pandemic-induced lockdowns have exacerbated mental health issues, including suicides, spousal violence, and domestic bullying. Consequently, the demand for digital therapeutics has surged, manifesting as mobile and web applications and facilitating remote access to support. However, children have been underserved in this category despite their vulnerability to the emotional consequences of school closures and caregiver distress. This study's objectives and methodology encompassed developing a child centric digital therapy mobile application, conducting usability testing for optimal user-friendliness, creating content compliant with industry standards, gathering user feedback for improvements and providing ongoing maintenance for the application's effectiveness. The resulting 'Calm & Care' prototype empowers parents to authorise counselling sessions and motivational content for their children at home. Ten families participated in user testing, yielding positive feedback praising the vibrant interface, child-friendly visuals, and simplified language for an enhanced user experience. 'Calm & Care' can enable local clinics to accept mental health patients with lower infection risks and increase treatment success. This research underscores the pivotal role of digital solutions in addressing children's mental well-being during the pandemic.

Relationship Between Hemorrhage Type and Development of Emotional and Behavioral Dyscontrol After Hemorrhagic Stroke.

Emotional and behavioral dyscontrol (EBD), a neuropsychiatric complication of stroke, leads to patient and caregiver distress and challenges to rehabilitation. Studies of neuropsychiatric sequelae in stroke are heavily weighted toward ischemic stroke. This study was designed to compare risk of EBD following intracerebral hemorrhage (ICH) and subarachnoid hemorrhage (SAH) and to identify risk factors for EBD following hemorrhagic stroke. The authors conducted a prospective cohort study of patients hospitalized for nontraumatic hemorrhagic stroke between 2015 and 2021. Patients or legally authorized representatives completed the Quality of Life in Neurological Disorders (Neuro-QOL) EBD short-form inventory 3 months after hospitalization. Univariable and multivariable analyses identified risk factors for EBD after hemorrhagic stroke. The incidence of EBD was 21% (N=15 of 72 patients) at 3 months after hemorrhagic stroke. Patients with ICH were more likely to develop EBD; 93% of patients with EBD (N=14 of 15) had ICH compared with 56% of patients without EBD (N=32 of 57). The median Glasgow Coma Scale (GCS) score at hospital admission was lower among patients who developed EBD (13 vs. 15 among those without EBD). Similarly, admission scores on the National Institutes of Health Stroke Scale (NIHSS) and the Acute Physiology and Chronic Health Evaluation II (APACHE II) were higher among patients with EBD (median NIHSS score: 7 vs. 2; median APACHE II score: 17 vs. 11). Multivariable analyses identified hemorrhage type (ICH) and poor admission GCS score as predictors of EBD 3 months after hemorrhagic stroke. Patients with ICH and a low GCS score at admission are at increased risk of developing EBD 3 months after hemorrhagic stroke and may benefit from early intervention.

Profiles of psychological flexibility and caregiving experience in dementia family caregivers: A latent profile analysis.

To explore the profiles of psychological flexibility among dementia family caregivers and examine their associations with psychological well-being and caregiving factors. Participants were 521 dementia family caregivers in Japan. Latent profile analysis was conducted to explore the profiles of psychological flexibility. The analyses examined differences in depression, anxiety, life satisfaction, and work-family conflict/enrichment between the profiles, and whether sociodemographic variables and caregiving stressors predict the profile. Four distinct profiles were identified: high psychological flexibility (14.2%), moderate psychological flexibility with high commitment (24.7%), moderate psychological flexibility with low commitment (48.0%), and low psychological flexibility (13.1%). The low psychological flexibility profile exhibited the highest scores of depression, anxiety and work-family conflict, followed by the moderate psychological flexibility with low/high commitment profiles, and the high psychological flexibility profile. The high psychological flexibility and moderate psychological flexibility with high commitment profiles exhibited higher life satisfaction than the moderate psychological flexibility with low commitment profile. Caregiving stressors, marital status, and caregiver status predicted the profile. Enhancing defusion and acceptance, rather than increasing commitment to personal values, may be beneficial in supporting distressed caregivers. Having more caregiving stressors, being single/divorced/bereaved, and being a primary caregiver may be useful indicators of decreased psychological flexibility among dementia family caregivers.

Psychosocial Correlates of the Experience of Caregiving Among Caregivers of Patients With Schizophrenia.

Family caregivers provide essential support to their loved ones with schizophrenia with profound outcomes for themselves. The caregiver burden fails to consider the entire caregiving experience, which also incorporates positive aspects of caring. Many potentially significant variables are associated with this. To examine the correlates of the experience of caregiving in caregivers of patients with schizophrenia. The specific objectives were to examine the socio-demographic variables of the patients and caregivers, clinical variables of the patient, caregivers' knowledge of illness, caregivers' perspectives of family functioning, caregiver coping, their social support, psychological distress, quality of life,and their spirituality, religiosity and personal beliefs and the associations of these variables with the caregivers' experience of caregiving. This cross-sectional observational study was conducted between August 2018 and January 2021 at All India Institute of Medical Sciences, New Delhi, India. One hundred and fifty-eightdyads of patients with schizophrenia and their family caregivers were recruited using purposive sampling. Experience of Caregiving Inventory was used to evaluate the caregiving experience. The caregivers were also assessed on socio-demographics, knowledge of illness, family functioning, coping, social support, general mental health, quality of life, and spiritual, religious, and personal beliefs. Patient socio-demographics and clinical variables were also assessed. A negative experience of caregiving was reported by caregivers of patients who had higher positive or negative symptoms of schizophrenia. Impaired Communication, Roles, Affective Responsiveness, Affective Involvement, and General Functioning aspects of family functioning were associated with a negative experience of caregiving. Denial/blame and seeking social support as coping were also associated with a negative experience of caregiving. A negative experience of caregiving was significantly positively correlated with greater psychological distress and poorer quality of life. Greater inner peace was associated with a less negative experience of caregiving. Spiritual strength was associated with a more positive experience of caregiving. Knowledge of mental illness and caregiver social support were not significantly associated with the experience of caregiving. Experience of caregiving is a relevant construct, the understanding of which can help inform caregiver-directed interventions in the future. Specifically, family-based interventions, which include ameliorating patient symptomatology, improving the family environment, strengthening caregivers' coping strategies, attending to caregiver distress, and encouraging spirituality among caregivers, may lead to a less negative and more positive experience of caregiving; and a better quality of life for caregivers.

Caring the caregivers. An online psychological intervention for family caregivers of oncological palliative patients

Aim: analyze the effectiveness of an online delivered psychological intervention program for oncological palliative caregivers in order to reduce the distress and caregiver burden. Methods: The program was developed for primary caregivers of advanced cancer patients, with a life expectancy of less than 6 months. The intervention consisted of 4 weekly sessions. The assessment instruments were the Caregiver Emotional Distress Detection Scale and the Zarit’s Reduced Scale and were applied at the beginning and end of the program. In addition, the main worries of the caregivers were categorized by the Caregiver Emotional Distress Detection Scale. Descriptive statistics and Student’s t were used. Results: 38 caregivers enrolled in intervention, 81.6% of whom were women. Regarding the degree of kinship, 44.7% were descendants of the patient. The distress was significantly reduced after the intervention. Uncertainty remained the main worry at both moments of measurement. Before the program, the second most frequent worry was the suffering of the patient, while after the intervention it was worries about the suffering of other family members. Conclusions: Carrying out this online group psychological intervention program proved to be effective in reducing emotional distress in the main caregivers of cancer patients at the end of life. Uncertainty was a constant concern throughout the program in the relatives.

PSYCHOSOCIAL RISK AND DISTRESS IN CAREGIVERS OF CHILDREN WITH CANCER

Family members experience challenging situations in the diagnosis/treatment of childhood cancer. The illness can affect the family adjustment and adherence to the child/adolescent's care, reflecting on routines and relationships (family, marital, work and social). Cancer can reach high levels of distress in caregivers. The aim of this research was to investigate the relationships between indicators of psychosocial risk and distress in caregivers of children/adolescents with cancer. Fourteen caregivers answered the instruments on: socioeconomic characteristics (Brazil Economic Classification Criterion [CCEB]); psychosocial risk assessment (Psychosocial Assessment Tool [PAT 2.0]); and distress (Distress Thermometer). The data were submitted to descriptive and inferential statistical analysis. It was found that most families presented a "target" classification of psychosocial risk and distress (e.g., worry, nervousness and pain). Inferential analyses did not confirm the hypothesis of a correlation between the level of distress and the total PAT score. However, positive correlations were observed between the domains of the scales, such as: positive correlation between the level of distress and problems with patients; and between partner distress and sibling problems, caregivers' problems, and caregivers' stress reactions. Negative correlations between physical and emotional distress symptoms and PAT domains were also observed. Caregiver distress may represent limitations to treatment, as it impacts emotional well-being and psychosocial functioning, especially in vulnerable families. Further studies are suggested to consider clinical and sociodemographic characteristics in order to understand the relationships between psychosocial variables involved. The need for systematic psychosocial assessment for pediatric oncology care is reinforced.

Exploring Psychosocial Distress in Caregivers of Children and Youth With Special Health Care Needs.

Caring for a child or youth with special health care needs (CYSHCN) can be overwhelming. Parents and caregivers may experience psychosocial distress, such as depression, frustration, and hopelessness. The purpose of the current study was to gain further insight into families' perspectives on the psychosocial impacts of caring for CYSHCN to identify gaps in health care systems and strengthen systems of support. A qualitative descriptive design was used in 16 parents and caregivers. Colaizzi's method of analysis and semi-structured interviews were used. Six themes emerged from this study: (1) Stigma and Isolation, (2) Religion as a Coping Mechanism, (3) Financial Challenges, (4) Bearing the Burden, (5) Familial Denial, and (6) System-Related Concerns. Psychiatric-mental health nurses (PMHNs) are in a pivotal position to use their knowledge, skills, and experiences to guide families. PMHNs can also engage communities and enhance mental health promotion to break the stigma associated with having a CYSHCN. [Journal of Psychosocial Nursing and Mental Health Services, 62(9), 37-46.].

Profiling the medical, functional, cognitive, and psychosocial care needs of adults assessed for home care in Ontario, Canada: The case for long-term 'life care' at home.

Calls to leverage routinely collected data to inform health system improvements have been made. Misalignment between home care services and client needs can result in poor client, caregiver, and system outcomes. To inform development of an integrated model of community-based home care, grounded in a holistic definition of health, comprehensive clinical profiles were created using Ontario, Canada home care assessment data. Retrospective, cross-sectional analyses of 2017-2018 Resident Assessment Instrument Home Care (RAI-HC) assessments (n = 162,523) were completed to group home care clients by service needs and generate comprehensive profiles of each group's dominant medical, functional, cognitive, and psychosocial care needs. Six unique groups were identified, with care profiles representing home care clients living with Geriatric Syndromes, Medical Complexity, Cognitive Impairment and Behaviours, Caregiver Distress and Social Frailty. Depending on group membership, between 51% and 81% of clients had identified care needs spanning four or more Positive Health dimensions, demonstrating both the heterogeneity and complexity of clients served by home care. Comprehensive clinical profiles, developed from routinely collected assessment data, support a future-focused, evidence-informed, and community-engaged approach to research and practice in integrated home-based health and social care.

Enhancing Quality of Life for Caregivers of Adolescents with Emotional Disorders through Digital Skills

Enhancing Quality of Life for Caregivers of Adolescents with Emotional Disorders through Digital Skills

Caregiver Distress and Child Behavior Problems in Children with Developmental Delay from Predominantly Minoritized Backgrounds

ABSTRACT Importance Child behavior problems have been shown to contribute to caregiver distress and vice versa among youth with developmental delay (DD). However, studies have not examined these associations among children and caregivers from underrepresented ethnic/racial backgrounds. Furthermore, research has not explored how associations function differently following internet-delivered treatment or based on the level of acculturation and enculturation. Objective We examined bidirectional associations between caregiver distress (i.e. symptoms of depression, anxiety, and stress) and externalizing and internalizing behavior problems in 3- to 5-year-old children with DD from underrepresented ethnic/racial backgrounds. We also examined the impact of internet-delivered Parent–Child Interaction Therapy (iPCIT) and the moderating role of acculturation and enculturation on these bidirectional associations. Method Children aging out of early intervention services (n = 150) and their primary caregiver were randomized to receive iPCIT or referrals as usual (RAU) in the community. Results Findings provide support for bidirectional associations between child internalizing behavior problems and caregiver depressive symptoms, although there were fewer significant associations among families randomized to iPCIT compared to RAU. Weaker associations were observed among families with higher levels of enculturation, whereas stronger associations were observed among families with higher levels of acculturation. Conclusions Results highlight a sensitive period from age 3.5 to 4 years old for bidirectional associations between caregiver distress and child behavior problems and highlight the importance of addressing family cultural values during treatment. Findings also suggest the utility of internet-delivered behavioral parenting interventions in weakening the effect of child behavior problems on caregiver distress and vice versa.

Demographics, Symptoms, Psychotropic Use, and Caregiver Distress in Patients With Early vs Late Onset Dementia

BackgroundUnderstanding experiences and challenges faced by persons living with Early-Onset Dementia (EOD) compared to individuals diagnosed with Late-Onset Dementia (LOD) is important for the development of targeted interventions. ObjectiveDescribe differences in sociodemographic, neuropsychiatric behavioral symptoms, caregiver characteristics, and psychotropic use. Design, Setting, ParticipantsCross-sectional, retrospective study including 908 UCLA Alzheimer's Dementia Care Program participants (177 with EOD and 731 with LOD). MeasurementsOnset of dementia was determined using age at program enrollment, with EOD defined as age <65 years and LOD defined as age >80 years. Sociodemographic and clinical characteristics were measured once at enrollment. Behavioral symptoms were measured using the Neuropsychiatric Inventory Questionnaire (NPI-Q) severity score and caregiver distress was measured using the NPI-Q distress score. Medications included antipsychotic, antidepressant, benzodiazepines and other hypnotics, antiepileptics, and dementia medications. ResultsEOD compared to LOD participants were more likely men, college graduates, married, live alone, and have fewer comorbidities. EOD caregivers were more often spouses (56% vs 26%, p <0.01), whereas LOD caregivers were more often children (57% vs 10%, p <0.01). EOD was associated with lower odds of being above the median (worse) NPI-Q severity (adjusted odds ratio [aOR], 0.58; 95% CI 0.35–0.96) and NPI-Q distress scores (aOR, 0.53; 95% CI 0.31–0.88). Psychotropic use did not differ between groups though symptoms were greater for LOD compared to EOD. ConclusionPersons with EOD compared to LOD had sociodemographic differences, less health conditions, and fewer neuropsychiatric symptoms. Future policies could prioritize counseling for EOD patients and families, along with programs to support spousal caregivers of persons with EOD.

Effects of dignity therapy on psychological distress and wellbeing of palliative care patients and family caregivers – a randomized controlled study

BackgroundThis study extended the original Dignity Therapy (DT) intervention by including partners and family caregivers (FCs) of terminally-ill cancer patients with the overall aim of evaluating whether DT can mitigate distress in both patients nearing the end of life and their FCs.MethodsIn this multicenter, randomized controlled trial (RCT), a total of 68 patients with life expectancy < 6 months and clinically-relevant stress levels (Hospital Anxiety Depression total score; HADStot ≥ 8) including their FCs were randomly assigned to DT, DT + (including their FCs), or standard palliative care (SPC) in a 1:1:1 ratio. Study participants were asked to complete a set of questionnaires pre- and post-intervention.ResultsThe coalesced group (DT and DT +) revealed a significant increase in patients’ perceived quality of life (FACIT-Pal-14) following the intervention (mean difference 6.15, SD = 1.86, p < 0.01). We found a statistically significant group-by-time interaction effect: while the HADStot of patients in the intervention group remained stable over the pre-post period, the control group’s HADStot increased (F = 4.33, df = 1, 82.9; p < 0.05), indicating a protective effect of DT. Most patients and their FCs found DT useful and would recommend it to other individuals in their situation.ConclusionsThe DT intervention has been well-received and shows the potential to increase HRQoL and prevent further mental health deterioration, illness burden and suffering in terminally-ill patients. The DT intervention holds the potential to serve as a valuable tool for facilitating end-of-life conversations among terminally-ill patients and their FCs. However, the implementation of DT within the framework of a RCT in a palliative care setting poses significant challenges. We suggest a slightly modified and less resource-intensive version of DT that is to provide the DT inventory to FCs of terminally-ill patients, empowering them to ask the questions that matter most to them over their loved one’s final days.Trial registrationThis study was registered with Clinical Trial Registry (ClinicalTrials.gov -Protocol Record NCT02646527; date of registration: 04/01/2016). The CONSORT 2010 guidelines were used for properly reporting how the randomized trial was conducted.

Emotional impacts of racial discrimination on caregiver-child dyads: Can mentalizing-focused parenting groups buffer against racism-related stress?

Black and Latinx caregivers face high risk for parenting stress and racism-related stress due to experiences of racial discrimination (RD). This study aimed to explore the associations between RD, parenting stress, and psychological distress in caregiver-child dyads, as well as the impact of a mentalizing-focused group intervention on caregivers' experiences of RD distress. Ethnoracially minoritized caregivers of children aged 5-17 years old participated in a non-randomized clinical trial (N = 70). They received either a 12-session mentalizing-focused group parenting intervention or treatment-as-usual in outpatient psychiatry. We assessed self-reported frequency and distress related to RD, parenting stress, and psychological distress at baseline (T1) and post-intervention (T2). Caregiver- and self-reported child psychological distress were also measured. The results showed that greater RD frequency and greater RD distress separately predicted higher overall parenting stress and parental role-related distress. Greater RD distress was linked to increased psychological distress in caregivers. Similarly, greater RD frequency and distress among caregivers were associated with higher caregiver-reported, but not self-reported, child psychological distress. No significant changes in RD distress were observed between T1 and T2 for either of the treatment groups. These findings highlight the exacerbating role of RD on parenting stress and psychological distress among ethnoracially minoritized caregivers and their children.

Applying Principles of Cognitive Behavioral Therapy to Support Caregivers of Children With Cancer

Caregivers of children with cancer face a myriad of stressors related to caring for their child that can place them at risk for mental health concerns above and beyond that of the average adult. Additionally, they grapple with the existential distress caused by the possibility that they may outlive their child. Caregiver distress is not only problematic for their own emotional, spiritual, social, and physical well-being, but also affects the family unit and can interfere with aspects of the child’s treatment. Clinicians trained in cognitive behavioral therapy (CBT) are well suited to support caregivers. Moreover, there is a strong evidence base for using interventions that incorporate cognitive and behavioral approaches with caregivers of children with cancer. We describe CBT’s application to this population through several case examples and also highlight important special considerations.

How Community-Based Health and Social Care Professionals Support Unpaid Caregivers: Experiences From One Health Authority in Ontario, Canada.

In Ontario, Canada, rising rates of caregiver distress have been the 'canary in the coal mine' for a health system out of balance with the needs of an ageing population. Community-based health and social care professionals are well placed to play an important role in the caregiver support process; however, a gap has remained in the understanding of if and how caregiver support strategies are operationalized or experienced by community service providers (CSPs). The goal of this study was to describe how CSPs interpreted policy and how those interpretations may enable their work in supporting unpaid caregivers. Using a qualitative constructionist design, we interviewed 24 participants and reviewed 92 publicly available documents. Braun and Clarke's method of thematic analysis was used for analysis strategy. Four overarching themes were identified: (1) community care as a priority, (2) sidewalk accountability, (3) creative care planning through partnerships, and (4) challenges to care delivery. We found that the importance of caregivers to the health system was reflected in organizational policy and strategy. There is an opportunity to improve health outcome for caregivers and the population alike through strong leadership and a clear shared vision. Our findings also suggested that social capital was a significant factor in enabling providers in their work, leveraging long-standing relationships, and accumulated local knowledge to implement highly creative care plans.

Relationship Between Acculturation and Mental Health in Korean American Family Caregivers of Community-Dwelling Persons Living with Dementia.

Despite the growing number of Korean American (KA) family caregivers for persons with dementia, little is known about how acculturation might affect caregiving stress in this population. Acculturation is a variable of considerable interest in caregiving research due to its significance in understanding the impact of cultural perceptions and expectations on the caregiving role and its relation to mental health outcomes. A cross-sectional descriptive study using baseline data from an ongoing randomized controlled trial of dementia caregiver intervention was performed to examine the association between acculturation and mental health outcomes among KA caregivers (n = 32) for persons with dementia. Self-report survey questionnaires including a bidirectional acculturation scale, Center for Epidemiologic Studies Depression Scale, the Perceived Stress Scale, and the Zarit Burden Interview were administered in person in English or Korean by trained bilingual community health workers. The primary independent variable, acculturation, was assessed using a 24-item inventory. It measured two sets of cultural orientation: Korean orientation and American orientation. The mean age was 67 years (SD = 11.8) and 87% were women. Half of the caregivers were spouses of persons with dementia, while the other half were offspring caregivers. In the multiple linear regression model, caregiver acculturation toward Korean cultural orientation had a significant and positive association with depressive symptoms (β = .62; SE = 0.25; p-value = .02) and perceived stress (β = .29; SE = 0.13; p-value = .03) after adjusting for age and self-efficacy. No significant effect of American cultural orientation was found for caregiver burden, perceived stress, or depressive symptoms. Our findings suggest that exploring the role of acculturation in caregiving and its relation to outcomes, particularly caregiver distress, may be valuable for future studies aiming to understand specific elements of cultural values and practices in the acculturation process related to mental health outcomes among immigrant Korean American caregivers.

Health literacy, eHealth literacy and their association with burden, distress, and self-efficacy among cancer caregivers.

Health literacy skills are vital for cancer caregivers in helping cancer survivors to navigate their diagnosis, treatment, and recovery but little is known. This study explored health literacy and eHealth literacy among cancer caregivers and the relationship between health literacy/eHealth literacy and potential associated factors. Informal caregivers who had cared for an individual with cancer completed a survey which collected demographic data and measured caregiver health literacy, eHealth literacy, self-efficacy, burden, and distress. Seven percent of caregivers had inadequate health literacy. Caregivers scored lowest on health literacy domains related to caregiver social support, information seeking and understanding care recipient preferences. eHealth literacy was associated with self-efficacy and burden while, different health literacy domains were associated with burden ('Understanding care recipient needs and preferences'), self-efficacy ('Cancer-related communication with the care recipient' and 'Understanding care recipients needs and preferences') and distress ('Proactivity and determination to seek information', 'Understanding care recipient needs and preferences', 'Understanding the healthcare system'). Findings highlight key areas of need regarding cancer caregiver health literacy which future research can target. Given the observed relationship between aspects of health literacy and burden, distress and self-efficacy future work could be carried out on how to alleviate high levels of burden and distress and how to enhance self-efficacy among cancer caregivers by addressing health literacy skills. Findings from this study will inform the development of health literacy interventions to support caregivers to build their health literacy skills and enable this group to better support cancer survivors as a result.

Educating Families of Brain Injury Patients During Acute Rehabilitation: A Quality Improvement Project.

Lack of information is cited as a source of distress for caregivers of patients with brain injury during the recovery process. This is a quality improvement project with the purpose of educating family members of brain injury patients about acute inpatient rehabilitation and providing a reliable source of information through the Model Systems Knowledge Translation Center Traumatic Brain Injury Model Systems Factsheets. The study was conducted in the brain injury unit of an acute inpatient rehabilitation facility and a total of 32 family members participated in the study. Educational sessions were provided verbally by phone based on the Model Systems Knowledge Translation Center-Traumatic Brain Injury Model Systems "Traumatic Brain Injury and Acute Inpatient Rehabilitation" Factsheet. Surveys with five confidence statements and Likert scale-graded responses were verbally administered by phone immediately before and after each educational session to evaluate for understanding. There was a statistically significant increase in confidence for all five confidence statements when comparing pre- and posteducation responses ( P < 0.05, Wilcoxon signed-rank test). This quality improvement project thereby presents an effective and feasible framework for teaching, improving communication, and providing valuable information to families early in the brain injury rehabilitation course.