Demographic Characteristics Of Caregivers Research Articles

Using Clustering Methods to Map the Experience Profiles of Dementia Caregivers

Using Clustering Methods to Map the Experience Profiles of Dementia Caregivers

Perceptions about Dementia Clinical Trials

AbstractBackgroundThe research community has historically failed to enroll diverse populations in dementia clinical trials. A unique aspect of dementia care research is the requirement of a study partner, who can attest to the care recipient’s clinical and functional capacity. The aim of this study is to assess racial and ethnic differences and the importance of various trial considerations, among dementia caregivers, in their decision to participate in clinical research as study partners.MethodWe embedded a vignette about a hypothetical dementia clinical trial in a nationally representative survey of dementia caregivers, oversampling Black non‐Hispanic and Hispanic caregivers. They were asked about their willingness to participate in the trial with their care recipient, and rated the importance of nine considerations in hypothetical decisions to participate. Caregiver demographic characteristics, care recipient characteristics, and relational characteristics were analyzed as predictors of trial participation in a demographic model. In a second model, caregiver demographic characteristics and the rated importance of the nine considerations were separately analyzed as predictors; both models used survey‐weighted logistic regression.ResultThe sample consisted of 610 caregivers, including 156 Black non‐Hispanic and 122 Hispanic participants. In the demographic model, hypothetical trial participation was negatively associated with caregiver age [OR (odds ratio) = 0.46, P = <0.001], and with care recipient male gender [OR = 0.34, P = 0.007]. In the second model, responsibility to help others by participating in research was significantly associated with participation [OR = 1.56, P = 0.049], while the possibility of the care recipient experiencing serious side effects was negatively associated with participation [OR = 0.51, P = 0.003]. In both models there was no significant difference in hypothetical participation between non‐Hispanic Black and non‐Hispanic White caregivers, or between Hispanic and non‐Hispanic White caregivers.ConclusionHispanic and non‐Hispanic Black dementia caregivers were not less likely than non‐Hispanic White dementia caregivers to participate in a hypothetical dementia clinical trial. Our study suggests that failures to recruit diverse populations in dementia clinical research are not attributable to less willingness among members of underrepresented groups, but may instead reflect structural barriers and historic exclusion from trial participation.

74 Neurobehavioral Symptoms of Dementia as a Risk Factor for Poor Caregiver Sleep Quality

Objective:Caregivers to persons with dementia (PWD) consistently report lower sleep quality than non-caregiving controls. Low sleep quality, in addition to being unhealthy for the caregiver, may also impact the quality of care provided to the PWD. One factor that may contribute to poor sleep among caregivers is neurobehavioral symptoms (NBS) of the PWD. NBS, such as mood changes, lack of motivation, and disinhibition, are consistently rated as some of the most distressing symptoms by caregivers. Furthermore, they can include some symptoms related to sleep, such as nighttime wandering and REM sleep behaviors. Prior correlational research indicates a very strong association between NBS of the PWD and sleep quality of the caregiver. However, there are third variables, particularly demographics of the caregiver, which may better explain this relationship. When these variables are controlled in research, findings on the association between PWD NBS and caregiver sleep quality are mixed. Thus, we sought to investigate the relation between PWD NBS and caregiver sleep quality while controlling for caregiver demographics.Participants and Methods:Fifty caregivers to PWD completed a survey containing the Mild Behavioral Impairment Checklist as a measure of PWD NBS, the Pittsburgh Sleep Quality Index as a measure of caregiver sleep quality, and caregiver demographics. The relationship between PWD NBS and caregiver sleep quality was assessed using hierarchical linear regression. First, we examined the relationship between caregiver demographics (age, gender, income) and caregiver sleep quality. Second, we added NBS to the model to assess for incremental predictive utility by examining change in R2.Results:A significant correlation was found between PWD NBS and caregiver sleep quality, with higher PWD NBS associated with worse caregiver sleep quality (r(48) = .34, p = .014). A hierarchal regression found that caregiver demographics explained a non-significant proportion of variance in reported caregiver sleep quality (F(3, 44) = 1.05, p = .382, R2 = .07). When PWD NBS was added in model two, there was a significant change in variance explained in the overall model (F(1,43) = 2.65, p = .046, AR2 = .13, R2 = .20). Across both models, PWD NBS was the only variable significantly associated with caregiver sleep quality (B = .08, p = .011).Conclusions:In line with previous studies, these results indicate a moderate relationship between PWD NBS and caregiver sleep quality. Furthermore, findings suggested that PWD NBS is a risk factor for poor caregiver sleep quality, above and beyond caregiver demographic characteristics. Individuals designing interventions aimed at improving caregiver sleep quality should consider including PWD NBS as an intervention target. Future research should replicate these findings in a longitudinal sample to further evaluate causality.

#3990 PACE-CKD: HEALTH-RELATED QUALITY OF LIFE OF PATIENTS WITH CKD AND CAREGIVERS: RESULTS FROM A US SURVEY

Abstract Background and Aims The substantial mortality and morbidity burden of chronic kidney disease (CKD) is well described, with the highest burden associated with progression to end-stage kidney disease (ESKD), where kidney replacement therapy (dialysis or kidney transplantation) is indicated. CKD is known to have a detrimental effect on patient health-related quality of life (HRQoL). However, there is a lack of data comparing the impact of CKD on patient and caregiver HRQoL versus the general population. This study aimed to administer validated HRQoL instruments using a quantitative online survey to estimate the HRQoL of patients with CKD and their caregivers compared to the general population. Method A non-interventional survey enrolled adult patients with CKD and caregivers. Patients with a diagnosis of CKD for at least 3 months were included. ESKD was defined as patients with CKD stage 5 or receiving dialysis or a kidney transplant. Caregivers were required not to receive formal payment and must have cared for a CKD patient for a minimum of 1 hour a week in the previous 4 weeks. A general population cohort was also enrolled, matching key patient and caregiver demographic characteristics (e.g. age, sex, and area of residence). Patient and caregiver HRQoL were assessed using the EQ-5D-5L instrument. Caregiver HRQoL was also measured by the CarerQoL-7D carer-specific instrument. Results This analysis is based on 199 patients with CKD and 113 caregivers in the United States who were enrolled between June and July 2022. Patient and caregiver median age was 58 years and 38 years, respectively. There were 32.2% patients who were on dialysis, while 81.4% caregivers were caring for a patient on dialysis. Most dialysis patients (79.7%) were receiving treatment in a clinic or hospital, with 20.4% of patients receiving it at home. Caregivers typically cared for their parent (45.1%) or partner (25.7%) and their duties would most commonly include driving to/from medical appointments (89.4%). When comparing mean [SD] EQ-5D-5L index scores for patients with CKD with the general population, patients had 33.7% lower utility (0.63 [0.27] vs 0.95 [0.08]) and caregivers had 13.8% lower utility (0.81 [0.22]) vs 0.94 [0.11]) versus the general population. EQ-5D-5L index scores were lower in dialysis-dependent patients (0.59 [0.27]) versus non dialysis-dependent patients (0.65 [0.27]). Patients and caregivers reported problems across all EQ-5D domains (anxiety and depression, mobility, pain/discomfort, selfcare and usual activities) when compared to the general population, with anxiety and depression domains scoring highest. According to the CarerQoL-7D index, caregivers for patients with CKD had worse HRQoL than caregivers for other major illnesses, including hip fractures, breast cancer and dementia, according to published estimates [1–3]. Results for patients and caregivers in other countries (United Kingdom, Germany and Mexico) will also be presented at the congress. Conclusion This survey provides new evidence on the HRQoL burden of CKD, both for patients and their caregivers, compared to the general population. Patients with CKD and caregivers incurred substantial detriment to their HRQoL, which was driven by all EQ-5D-5L domains, particularly anxiety and depression. Evidence based policy interventions should aim to slow CKD progression to reduce the large societal burden to patients and their caregivers. Funding: This study was supported by AstraZeneca.

Caregiver Awareness of Safe Pitching Recommendations in Youth Fastpitch Softball Pitchers

Although fastpitch softball participation continues to rise, there is a lack of established pitch count guidelines, potentially putting young female athletes at risk of overuse injuries. In addition to coaches, caregivers' ability to recognize and employ safe pitching guidelines plays an important role in athlete safety. The purpose of this study was to assess caregivers' knowledge of their child's pitching practices and their familiarity with softball pitching recommendations. We hypothesized that caregivers would be unaware of safe pitching recommendations in youth fastpitch softball. Cross-sectional study. A 30-question survey was distributed to caregivers of youth fastpitch softball pitchers in age groups 10U (ie, ≤10 years), 12U, 14U, 16U, and 18U. The survey included questions on the demographic characteristics of caregivers and athletes, caregivers' knowledge of safe pitching recommendations, and athletes' pitching background and throwing habits. Comparisons of responses between the age groups were conducted using the chi-square test, Fisher exact test, or 1-way analysis of variance, as appropriate. A total of 115 caregivers completed the survey. Of the respondents, 84% were between 31 and 50 years, and 81.7% had a degree beyond high school. Only 28.1% of caregivers reported participating in youth sports. When asked to estimate the number of pitches they considered a safe amount during a single outing, 28.7% of caregivers (n = 33) did not provide a limit, 4.3% (n = 5) stated no limit was needed, 32.2% (n = 37) suggested 25 to 80 pitches, 21.7% (n = 25) suggested 81 to 100 pitches, 12.2% (n = 14) suggested 100 to 150 pitches, and 0.9% (n = 1) suggested that >150 pitches were acceptable. These data emphasized that only 14.8% of the caregivers were aware of any pitching guidelines. However, 93% of caregivers acknowledged that they would adhere to recommendations if guidelines were made available. The study findings demonstrated that a majority of caregivers are unaware of current youth fastpitch softball pitching recommendations.

Comparing the Quality of Life of Caregivers for Patients with Hematologic and Solid Malignancies in Kuwait: A Cross-Sectional Study

Cancer incidence is escalating globally, and the Middle East, including Kuwait, is no exception. This study delves into a comparative analysis of the Quality of Life (QOL) experienced by caregivers for patients with hematologic and solid malignancies in Kuwait. The prevalence of cancer in Kuwait is rising, becoming the second leading cause of death after cardiovascular diseases. Colorectal and breast cancer are predominant forms, with an increased occurrence in females. Notably, haematological malignancies, rooted partly in consanguineous marriages, exhibit a distinct prevalence pattern, accounting for a significant proportion of deaths. Kuwait has made substantial investments in bone marrow transplantation programs to address this issue. To understand the impact of caregiving on the QOL of individuals supporting cancer patients, a cross-sectional study was conducted. Caregivers were recruited from the Kuwait Cancer Control Centre outpatient clinics between February 25 and March 25, 2020. Caregivers’ QOL was assessed using the Caregiver Quality of Life Cancer Index (CQoLC) through face-to-face interviews. The study aimed to determine if caregivers were adequately informed before their patients’ discharge and analyse reasons for non-participation. Previous research on caregiver QOL has predominantly focused on Western societies, while this study addresses the Kuwaiti context. The expectation is that findings will contrast with Western studies due to unique cultural and societal dynamics, where women play a pivotal role in caregiving. While males may experience reduced QOL due to work-home time constraints, female caregivers in Arab countries tend to be efficient, albeit with potential skill deficiencies. The study enrolled 117 caregivers, with 65 supporting patients with solid malignancies and 52 caring for hematologic malignancy patients. The demographic characteristics of caregivers were analysed, revealing trends related to age, gender, marital status, employment, education, and living arrangements. Caregivers of solid malignancy patients displayed higher levels of burden compared to hematologic malignancy caregivers, with emotional strain, worry, and sadness being significant factors. While there was a notable refusal rate among potential participants, the study’s insights are valuable. To enhance the QOL of caregivers, especially those supporting outpatient cases, targeted interventions such as palliative care and training programs are crucial. The economic burden on caregivers necessitates policies addressing financial support. The findings of this study contribute to the ongoing efforts to improve the QOL of caregivers in Kuwait, thereby alleviating the multifaceted challenges posed by cancer and its care. This research underscores the importance of tailoring interventions to the specific cultural, social, and economic context of Kuwait to optimize caregiver well-being and patient outcomes.

Role strain and COVID‐era burden among South Asian caregivers of individuals with brain health conditions and disabilities

AbstractBackgroundThe COVID‐19 pandemic has renewed attention to the conflicting demands placed on caregivers worldwide. Nowhere is this more evident than in South Asia, where cultural norms and a scarcity of long‐term care facilities have made the home the locus of caregiving for individuals with brain health conditions and disabilities. A hidden cost of this informal arrangement is the burden experienced by the primary caregiver. This may be exacerbated when traditional caregiving expectations clash with personal aspirations outside the family.MethodThis paper investigates the determinants of burden among 494 informal caregivers in India, Pakistan, and Bangladesh during the COVID‐19 pandemic. The variables, obtained from the Coping with Loneliness, Isolation, and COVID‐19 (CLIC) Global Caregiver study, include caregiver demographic characteristics, features of the caregiving arrangement, and subjective measures of the caregiving experience. The dependent variable in our analysis, the perceived frequency of burden, is rated by respondents on a five‐level scale. Role strain is expected to be greatest among young, educated women living with the care recipient in their own homes. Therefore, burden should exhibit a positive association with female gender, education, and cohabitation, and a negative association with age.ResultOut of the 494 caregivers included in the study, 33.8% experienced increasing burden and 58% experienced loneliness some of the time during Covid‐19. The ordinal logistic marginal effects are consistent with all four hypotheses. Caregiver Burden is found to be positively correlated with female gender (OR,1.92; 95%CI, 0.35,1,03; P=<0.001), the 18‐39 age range (OR,1.71; 95%CI, 0.114, 0,963; P=0.01), poor finances (OR,2.192; 95%CI,0.22,1.34; P=0.006), poor physical health (OR, 2.24, 95%CI, 0.29,1.32, P=0.002), poor mental health (OR,1.86; 95%CI, 0.14,1.10, P=0.011), and care recipients with dementia/Alzheimer's (OR,2.76; 95%CI, 0.52,1.51, P=<0.001) and/or mental health conditions (OR,1.61; 95%CI, 0.02,0.94, P=0.039).ConclusionRole strain may be a significant driver of burden when the caretaker’s educational and professional potential collide with traditional South Asian family obligations. The burden reported by our respondents suggests that role strain may elevate stress among young, educated caregivers. Our results, therefore, provide indirect evidence concerning the changing economic and socio‐cultural context of caregiving in South Asian households.

Understanding Factors That Predict Advance Directive Completion.

Advance care planning was designed for the purpose of ensuring that patients receive care at end of life (EOL) that is congruent with their wishes, goals, and values. Despite the evidence of the negative impact of not having advance directives (ADs), only one-third of adults in the United States have written ADs. Determining the patient's goals of care in the setting of metastatic cancer is vital to the delivery of high-quality healthcare. Although much is known about barriers to AD completion (e.g., the uncertainty of the disease process and trajectory, readiness of patient and family to have these discussions, and patient-provider communication barriers), little is known about the role of both patient and caregiver factors influencing AD completion. This study aimed to understand the relationship between patient and family caregiver demographic characteristics, and processes, and their influence on AD completion. This study was a cross-sectional descriptive correlational design and employed secondary data analysis. The sample was composed of 235 patients with metastatic cancer and their caregivers. A logistic regression analysis was performed to analyze the relationship between predictor variables and the criterion variable of AD completion. Out of the 12 predictor variables, only 2 variables (patient age and race) predicted AD completion. Of those two predictor variables, patient age made a greater and unique contribution to explaining AD completion, compared with patient race. There is a need for further research on cancer patients with historical low AD completion.

Protocol for the Development of a Nutrition and Mealtime Management Questionnaire for Caregivers of Children Ages 4–12 years With Cerebral Palsy in India

Abstract Objectives To develop a Nutrition and Mealtime Management Questionnaire for caregivers of children ages 4–12 years with Cerebral Palsy (CP) in India. Methods The proposed bespoke Nutrition and Mealtime Management Questionnaire for caregivers of children ages 4–12 years with CP in India will be developed using a sequenced approach. A first step would be to use findings from an ongoing scoping review to develop the questionnaire. The focus of the scoping review is to identify key concepts regarding nutrition- and mealtime-related practices used for children with CP and factors that influence mealtime related decisions. Next, the questionnaire is envisioned to broadly comprise three sections: demographic characteristics of caregivers; their nutrition- and mealtime-related knowledge, attitudes, and practices; and physical, sociocultural, and environmental factors that influences mealtime. The questionnaire will be developed in English and then it will be translated to Bengali, the locally spoken language before fielding in the city of Kolkata. Kolkata is the capital city of the state of West Bengal in eastern India. The questionnaire will be pre-tested using cognitive interviews among a convenience sample of five caregivers of children ages 4–12 years with CP. The questionnaire will be modified based on the results of pre-testing if required. The revised questionnaire will be pre-tested again among a convenience sample of another five caregivers. Results N/A as this is a study protocol abstract as denoted in the abstract title. Conclusions The Nutrition and Mealtime Management Questionnaire would be the first tailored dietary questionnaire to assess nutrition- and mealtime-related knowledge, attitudes, and practices; and physical, sociocultural, and environmental factors that influences mealtime practices of caregivers of children with cerebral palsy in India. Funding Sources Lewis Foundation Grant, Georgia State University.

Abstract P211: Stroke Recovery Navigator to Improve Post Stroke Recovery

Social support impacts recovery after stroke. Patient centered navigation programs provide social support and have shown benefit with other patient populations. The purpose of this study is to determine if there is a difference in outcomes for stroke survivors and caregivers who receive navigation services post-discharge. The study used a multi-center quasi-experimental before-after design to examine the impact of a telephone-based stroke navigation. Selected recruitment sites were nine facilities without navigation programs. Facilities provided information to survivors and caregivers about Stroke Recovery Navigator (SRN) prior to discharge and made referrals to the program. Participants were randomized into control and intervention groups using a computer-generated coin flip. Navigators completed telephone assessments within a week of referral. Navigators received the following trainings: Patient Navigation Fundamentals, motivational interviewing, and mental health first aid. The Reintegration to Normal Living (RNLI) scale was completed by all survivors and the Zarit Caregiver Burden scale was completed by all caregivers. The control group completed the initial and final assessments using these tools. In addition to these assessments, the intervention group received an individualized navigation plan and weekly contact by the SRN. The study randomized 301 individuals (82 caregivers, 219 survivors), with completion rate of 32%. Caregiver demographic characteristics and baseline caregiver burden scores were not statistically significant. Caregiver burden in the intervention group were lower compared to the control group, but not statistically significant (p=0.25). Demographic characteristics for survivors were similar between groups. RNLI score for survivors was slightly higher for the intervention group (p<0.10). To achieve statistical significance additional participants were needed. In conclusion differences in quality of life for survivors and caregivers were not statistically significant between the groups. Additional information on the benefits of an SRN program is needed to support its implementation. However, important lessons were learned to improve such program and its design.

The Acceptability and Efficacy of Electronic Data Collection in a Hospital Neurodevelopmental Clinic: Pilot Questionnaire Study.

BackgroundThere is a growing need for cost-efficient and patient-centered approaches to support families in hospital- and community-based neurodevelopmental services. For such purposes, electronic data collection (EDC) may hold advantages over paper-based data collection. Such EDC approaches enable automated data collection for scoring and interpretation, saving time for clinicians and services and promoting more efficient service delivery.ObjectiveThis pilot study evaluated the efficacy of EDC for the Child Development Unit, a hospital-based diagnostic assessment clinic in the Sydney Children’s Hospital Network. Caregiver response rates and preference for EDC or paper-based methods were evaluated as well as the moderating role of demographic characteristics such as age, level of education, and ethnic background.MethodsFamilies were sent either a paper-based questionnaire via post or an electronic mail link for completion before attending their first on-site clinic appointment for assessment. A total of 62 families were provided a paper version of the questionnaire, while 184 families were provided the online version of the same questionnaire.ResultsCompletion rates of the questionnaire before the first appointment were significantly higher for EDC (164/184, 89.1%) in comparison to paper-based methods (24/62, 39%; P<.001). Within the EDC group, a vast majority of respondents indicated a preference for completing the questionnaire online (151/173, 87.3%), compared to paper completion (22/173, 12.7%; P<.001). Of the caregiver demographic characteristics, only the respondent’s level of education was associated with modality preference, such that those with a higher level of education reported a greater preference for EDC (P=.04).ConclusionsThese results show that EDC is feasible in hospital-based clinics and has the potential to offer substantial benefits in terms of centralized data collation, time and cost savings, efficiency of service, and resource allocation. The results of this study therefore support the continued use of electronic methods to improve family-centered care in clinical practices.

Effectiveness of Empowerment Programme on Stress and Care Giving Burden among Care Givers of Chronically Ill Patients Admitted in MMIMS&amp;R Hospital, Mullana Ambala, Haryana

Background- One of the most compassionate and self-sacrificing things a person can do is care for a sickloved one. Caring for a family member with impaired mental and behavioral functioning presents the moststressful of care giving situations. Keeping family caregivers healthy and able to provide care is crucial tomaintaining our nation’s long-term healthcare system.Aims – To assess the effectiveness of Empowerment programme regarding stress and care giving burdenamong care givers of chronically ill patients in experimental and comparison group.Material and Methods - A Quasi Experimental non Equivalent control group pretest post test design. 95care givers of chronically ill patients (50 in experimental and 45 in comparison group) selected from hospitalby using convenience sampling technique. Empowerment programme was administered in experimentalgroup. Selected demographic characteristics, standardized perceived stress scale and standardized care giverburden scale were used to collect data.Results- The study showed that the mean post test 1 and post test 2 stress score was 12.44 ± 2.10 &amp;12.26±2.05 and 14.11 ± 3.11 &amp; 14.40± 3.12 in experimental and comparison group respectively. There wasno significant correlation between stress and care giving burden .There was no association of care givingburden score of the care givers in experimental and comparison group with their selected patient demographiccharacteristics and there was no significant association of care giving burden scores with their selected caregiver demographic characteristics in experimental group and in comparison group except gender.Conclusion- Empowerment programme was effective in reducing stress and care giving burden among caregivers of chronically ill patients

Adaptation and validation of UNICEF/Washington group child functioning module at the Iganga-Mayuge health and demographic surveillance site in Uganda

BackgroundThe UNICEF/Washington Group Child Functioning Module (CFM) assesses child functioning among children between 5 and 17 years of age. This study adapted and validated the CFM at the Iganga-Mayuge Health and Demographic Surveillance Site (IM-HDSS) in Uganda.MethodsThis cross-sectional study was conducted between September 2018–January 2019 at the IM-HDSS. Respondents were caregivers of children between 5 and 17 years of age who were administered modified Washington Group short set (mWG-SS) and CFM. The responses were recorded on a 4-point Likert scale. Descriptive analysis was conducted on child and caregiver demographic characteristics. Exploratory factor analysis (EFA) assessed underlying factor structure, dimensionality and factor loadings. Cronbach’s alpha was reported as an assessment of internal consistency. Face validity was assessed during the translation process, and concurrent validity of CFM was assessed through comparison with disability short form.ResultsOut of 1842 caregivers approached, 1439 (78.1%) participated in the study. Mean age of children was 11.06 ± 3.59 years, 51.4% were males, and 86.1% had a primary caregiver. Based on EFA, vision, hearing, walking, self-care, communication, learning, remembering, concentrating, accepting change, behavior control, and making friends loaded on factor 1 - “Motor and Cognition,” while anxiety and depression loaded on factor 2 - “Mood”. Cronbach’s alpha for the overall CFM was 0.899 (good internal consistency). Cronbach’s alpha for each extracted factor was excellent, motor and cognition (0.904), and mood (0.902). CFM had acceptable face validity. Spearman’s rank correlation between scores of CFM and modified WG short set was 0.51 (p-value < 0.001). The overall mean CFM score was 2.47 ± 3.82 out of 39. The mean score for Mood (1.35 ± 1.42 out of 6) was higher compared to Motor and Cognition (1.12 ± 3.06 out of 33). Comparing modified WG short set and CFM Likert responses, the percent agreement was greatest for “cannot do at all.”ConclusionCFM is a two-factor, valid and reliable scale for assessing disability in Uganda and can be applied to other similar settings to contribute towards disability data from the region. It is an easy-to-administer tool that can help in deeper understanding of context-specific burden and extent of disability in children between 5 and 17 years of age.

Targeting services to reduce need after a child abuse investigation: Examining complex needs, matched services, and meaningful change

Background and purposeMatching needs and services following a child protective services (CPS) investigation is important for families with complex needs (i.e. mental health, substance use, and domestic violence) because several studies indicate that a service match is associated with important child welfare outcomes including decreased substance abuse, lowered rates of maltreatment, and increased family reunification. However, few of these studies have examined whether matching services reduces the different areas of need that service matching targets. In response, this study examined the change in need among families with complex needs that received matched services in a community-based prevention program following an initial CPS investigation. MethodsThe sample consisted of 836 families with complex needs related to mental health, substance use, and domestic violence that had an unfounded or inconclusive CPS investigation between July 2006 and December 2010. Eligible families had a child five or younger that remained at home after an initial CPS investigation and were at moderate to high risk of future maltreatment. The Family Assessment Form (FAF) was used to indicate need in three areas (concrete, clinical, and educational/parenting) and families received an array of services including concrete, educational/parenting, and/or clinical services. A match occurred if a caregiver had an aforementioned need and received a corresponding service. Reduced need was indicated by a change from a mean score of >3 (problematic functioning) on the FAF to a mean score of <3 (adequate functioning). Paired sample t-tests and Pearson Chi-2 analyses were used to examine bivariate associations between matched services by area of need on reduced need. Multivariate logistic regressions were conducted to determine the impact of matched services on reduced need in targeted areas and overall while controlling for caregiver demographic characteristics including ethnicity, age, income, number of caregivers and children, and history of abuse. FindingsBivariate analyses revealed that matched concrete and educational/parenting services was significantly associated with reduced need in targeted areas. For matched clinical services, this pattern was found for mental health and substance use but not for domestic violence. Multivariate analyses indicated that receiving matched concrete services was associated with an increased likelihood of overall reduced need (OR = 3.46; 95% CI = 1.84, 6.52) as was a match for educational/parenting need related to caregiver–child interactions (OR = 2.16; 95% CI = 1.15, 4.04). For clinical need, receiving matched clinical services for mental health (OR = 4.11; 95% CI = 2.39, 7.09) was associated with an overall reduction in need but not for substance use or domestic violence. Conclusion and implicationsMatching needs and services for families with complex needs following a CPS investigation remains important considering the number of families with complex needs that come to the attention CPS. Findings from this study highlight that matching needs and services can reduce targeted areas of need, overall need, and may serve as a catalyst for change in multiple areas of need.

The Relationship Between Diet Nutrition Knowledge and Demographic Characteristics in Family Caregivers of Patients With Dementia

Although the general-care knowledge of family caregivers related to dementia had been studied, little attention has been given to understanding the knowledge of caregivers related to dementia diet nutrition. This knowledge is important to help caregivers handle the eating and nutrition problems of people with dementia (PwD). The purpose of this study was to explore the dementia diet nutrition knowledge of family primary caregivers and to analyze whether demographic characteristics of caregivers and/or the dementia stages of PwD have a relationship with dementia diet nutrition knowledge. A descriptive and cross-sectional study using a questionnaire survey was conducted. A total of 220 primary family caregivers of people with dementia were recruited. Results showed that the average total score for the 13 questions on diet nutrition knowledge was 71.85%. Moreover, only 28.2% of the participants answered the question "Malnutrition is a significant risk during the early stage of dementia" correctly. In addition, the findings showed significant differences in the diet nutrition knowledge of participants based on education level (F = 3.989, p < .05) and the use of foreign (non-Taiwanese) caregivers (t = -2.919, p < .01). The participants had sufficient overall diet nutrition knowledge of dementia. However, they lacked knowledge in specific areas. Family caregivers with higher levels of education and those who hired foreign caregivers had better knowledge scores. The results may be used as a reference for nurses providing dementia dietary education. It is recommended that special attention be given to dietary education when patients are at the early onset phase of the disease and when caregivers have a lower level of education in order to improve the overall quality of dementia dietary care in the community.

Factors associated with health-related quality of life among family caregivers of disabled older adults: a cross-sectional study from Beijing.

Because of the aging population and the shortage of standardized institutional solutions for long-term care (LTC) in China, family caregivers in Beijing are increasingly called upon to provide home care for disabled older adults. Caregivers face a heavy care burden, and decreased physical and mental health (MH). This study aims to describe health-related quality of life (HRQoL) and to identify its predictors for Chinese family caregivers of disabled older adults.A total of 766 caregivers were recruited from 5 communities in the Dongcheng District of Beijing. Measures included the 36-item Short-Form Health Survey (SF-36), the Zarit Caregiver Burden Interview (ZBI) scales, and the Chinese Social Support Rating Scale (SSRS). Hierarchical multiple regression (HMR) analysis was used to identify the predictors.HMR analysis showed that each block of independent variables (demographic characteristics of disabled older adults, demographic characteristics of caregivers, caregiving context, and subjective caregiver burden) had contributed significantly to caregivers’ physical and mental quality of life. Subjective caregiver burden explained the greatest amount of total variance in all MH subscales and the 2nd greatest amount of variance in most physical subscales. Therefore, subjective caregiver burden was the strongest predictor of HRQoL.Our findings suggest that a decrease in caregiver burden can improve caregivers’ HRQoL, and additional social support is important in decreasing the impact of caregiving on HRQoL. Importantly, an LTC system should be established in China as soon as possible.

Agreement about end-of-life (EOL) care among advanced cancer patients and their caregivers: Associations with care received.

10021 Background: Patients with advanced cancer and their caregivers often have different preferences regarding patients’ EOL care. Disagreement in a patient-caregiver dyad can increase stress and result in suboptimal care. Understanding factors that promote agreement, as well as the effect of agreement on care received at EOL, can inform interventions to improve communication and EOL decision-making for patients and caregivers. Methods: 205 patients (Stage III or IV cancer plus limited prognosis) and their caregivers were recruited to a randomized controlled trial of a communication intervention for patients, caregivers, and providers (Cancer Communication Study, PI: Epstein). Before intervention, patients completed the Preferences for Life-Extending Treatment questionnaire, which asked their preference regarding experimental treatment, life support, and palliative care; caregivers were asked about patients’ preferences. Binomial logistic regressions analyses modeled agreement in preferences as a function of patient and caregiver demographic characteristics and EOL care received as a function of patient-caregiver agreement. Results: The majority of patient-caregiver dyads agreed about experimental treatment (60.3%), life support (63.4%), and palliative care (70.7%). Dyads were more likely to agree about palliative care when patients were female (OR = 1.94, p = .03) and non-Hispanic white (OR = 2.10, p = .07) and when caregivers were college educated (OR = 2.04, p = .03). Of the 82 patients who died during study follow-up, 57 (69.5%) received EOL care congruent with their preferences. In 19 of the 38 (50%) cases where patient-caregiver dyads disagreed, caregivers’ preferences predicted EOL care received. Dyadic agreement about life support was associated with increased odds of patients receiving/not receiving life support congruent with their preference (OR = 3.02, p = .02). Conclusions: Facilitating agreement between patients and caregivers could improve receipt of patient-centered care. A communication intervention designed to increase dyadic agreement by helping patients and caregivers discuss challenging EOL decisions might improve EOL care delivery. Clinical trial information: NCT01485627.

Factors associated with health-related quality of life among Chinese caregivers of the older adults living in the community: a cross-sectional study

BackgroundUnder the culture of filial piety and due to the Confucianism spirit in China, family caregivers usually undertake the responsibilities of caring for the older adults. They usually suffer from a heavy burden which is believed to impair their mental and physical health. Thus this study aims to describe the health-related quality of life (HRQOL) among Chinese caregivers of the older adults living in the community and explore the predictors of caregivers’ HRQOL.MethodsA cross-sectional study was conducted through convenience sampling. The study population was composed of 1,144 caregivers of older adults who suffered from one or more types of chronic diseases in 15 communities in 3 eastern cities of China. Family caregivers were interviewed face-to-face using the 36-item Short-Form Health Survey (SF-36) and the ZARIT Caregiver Burden interview (ZBI) scales. The Antonovsky's Sense of coherence (SOC) scale was also used to measure personal coping capability of the caregivers. Hierarchical multiple regression analysis (HMR) was performed to explore the predictors of caregivers’ HRQOL.ResultsThe majority of the caregivers were females (60.0%) or adult children (66.5%). Mental QOL was significantly lower than physical QOL. Hierarchical multiple regression analysis showed that Demographic Characteristics of Caregivers, Patients’ Characteristics, and Subjective Caregiver Burden explained most of the total variance of all aspects of HRQOL. While, Objective Caregiving Tasks was only associated with physical QOL. Subjective Caregiver Burden was the strongest predictor of both physical and mental QOL. SOC was also a strong predictor of physical and mental QOL.ConclusionsThe mental QOL of the caregivers of older adults was disrupted more seriously than physical QOL. Additionally, Subjective Caregiver Burden might decrease caregiver’ health. A decrease in caregiver burden could promote better management of caregiving tasks, and improve HRQOL. Also, coping capabilities, like SOC, are needed to decrease the impact of caregiving on HRQOL of Chinese caregivers of the older adults.

Factors related to depressive symptoms among Chinese caregivers of cancer patients

Caregivers, assuming the responsibilities of caring for patients, are involved in significant emotional and physical caring which may lead to depressive symptoms. However, few studies are available pertaining to related factors of depressive symptoms among cancer caregivers in China. This study aims to evaluate the prevalence of depressive symptoms and to explore its predictive factors. A face-to-face interview was conducted with 312 cancer caregivers in Shenyang. Depressive symptoms were assessed by the Center for Epidemiologic Studies Depression scale. Hierarchical multivariate regression analysis was used to explore the factors related to depressive symptoms. In the hierarchical regression, caregiver demographic characteristics were entered in the first step, patients' characteristics were entered in the second step, objective caregiving loads were entered in the third step, subjective caregiving burden was entered in the fourth step, and Sense of Coherence (SOC) was entered in the last step. The prevalence of caregivers' depressive symptoms was 63.5%. Regression analyses showed that demographic characteristics of caregivers and subjective caregiving burden explained most of the total variance, accounting for 28.5% and 14.6%, respectively. Subjective caregiving burden was positively associated with depressive symptoms, whereas SOC was negatively associated with depressive symptoms. Chinese caregivers of cancer patients experienced higher levels of depressive symptoms. Demographic characteristics of caregivers and subjective caregiving burden were the most significant predictors of depressive symptoms, whereas SOC could attenuate the levels of depressive symptoms. Caregiving burden should be decreased, and SOC is highly recommended to manage caregiving tasks in order to alleviate depressive symptoms.

Caregiver Role Overload and Network Support in a Sample of Predominantly Low-Income, African-American Caregivers of Persons Living with HIV/AIDS: A Structural Equation Modeling Analysis

While informal caregivers play an important role in improving the health of disadvantaged persons living with HIV/AIDS (PLHAs) in the United States, caregiver role overload has the potential for distress. We used latent profile analysis (LPA) to classify caregivers based on their perceived level of support and structural equation modeling (SEM) to examine the relationships among role overload, perceived support, caregiver demographic characteristics, and social network members' characteristics in a sample of 215 predominantly low-income, African-American informal caregivers. The LPA resulted in two classes of caregivers with higher and lower perceived support. The SEM results indicated that caregiver role overload was associated with being in the less supported class, younger age, and limited physical functioning, while social support class was associated with being female and being HIV seropositive in addition to support network characteristics. Interventions should address the support needs of HIV caregivers to reduce their potential for distress.