Duration Of Caregiving Research Articles

Disrupted sleep and associated factors in Australian dementia caregivers: a cross-sectional study

BackgroundSleep disturbance is an issue reported by caregivers. Waking at night is a feature of dementia and by proxy, sleep disturbance among caregivers is reported to be high. Little is known about the characteristics of dementia caregivers’ sleep and the factors that may influence sleep disruption.The purpose of this study was to investigate the sleep characteristics and disturbances of Australian caregivers of a person living with dementia. In addition, it evaluated the psychological wellbeing of caregivers by evaluating associations between mood and sleep in this population.MethodsThis study used a cross-sectional, descriptive, correlation design. Participants were recruited with the assistance of Alzheimer’s Australia, Dementia Australia and targeted social media advertising. In total, 104 adult, primary, informal caregivers of people with dementia participated, completing a questionnaire on demographic characteristics, the Depression, Anxiety and Stress Scale (DASS-21) and the Pittsburgh Sleep Quality Index (PSQI).ResultsIn this study, 76% of caregivers were female who had been caring for someone living with dementia on average for 4.8 years. 44% of participants had two or more co-morbidities namely cardiovascular disease, osteoarthritis and diabetes. 94% of participants were poor sleepers with 84% with difficulty initiating sleep and 72% reporting having difficulty maintaining sleep. Overall, psychological distress was common with high levels of moderate to severe depression, anxiety and stress. Global PSQI scores were significantly positively associated with depression and anxiety, with the strongest correlation seen with stress scores. Depression scores were also moderately associated with daytime dysfunction. Stress was identified as a significant predictor of overall sleep quality.ConclusionsSleep problems are common within the population of dementia caregivers. Due to the nature and duration of caregiving and the progression of dementia of the care recipient, there is the potential for a decline in the caregivers’ mental and physical health. Caregivers of those living with dementia are more likely to have comorbidities, depression, anxiety and stress. Sleep quality is correlated with emotional distress in dementia caregivers although the direction of this association is unclear. Therefore, sleep and psychological wellbeing may be intertwined, with improvements in one aspect resulting in a positive impact in the other.

Determinants of overburdening among informal carers: a systematic review

BackgroundThe world’s population is ageing, resulting in rising care demands and healthcare costs, which in turn lead to a shift from formal to informal care. However, not only is the number of potential informal carers fast decreasing, but also informal caregivers are experiencing a higher caregiver burden. This literature review aims to synthesize the literature on the common determinants of caregiver burden in Western countries, to help ensure future continuation of informal care in the home context, and to improve or sustain the quality of life of caregivers and patients alike.MethodA systematic review of peer-reviewed articles included in PubMed, Scopus, and/or PsychInfo was conducted.ResultsSeventeen articles were included. The most important predictors were the duration of caregiving and the patient’s dependency level, in terms of both physical and mental dependency stemming from decreased cognitive capacity or behavioural problems. Some specific illnesses and role conflicts or captivity also increased caregiver burden, whereas social support lowered it. Being a female caregiver or having an adult–child relationship led to a higher burden.ConclusionsThe most important predictors of caregiver burden are the duration of caregiving and the patient’s dependency level. In addition, the patient’s behavioural problems and cognitive capacity determine dependency level, and thus care burden. Interventions to relieve burden need to be adapted to the illness trajectory of specific diseases and corresponding needs for social support for both the recipient and the caregiver. Changing role expectations, leading to men being more involved, could reduce the disproportionately high burden for women.

Family Caregivers of Veterans Experience High Levels of Burden, Distress, and Financial Strain.

To describe the caregiving experiences and physical and emotional needs of family members and friends who provide care to veterans with mental, physical, and cognitive comorbidities. Cross-sectional study. National telephone surveys administered from 2017 to 2019. Family caregivers of veterans enrolled in the Veterans Affairs (VA) Program of General Caregiver Support Services between October 2016 and July 2018 who responded to a telephone survey (N = 1,509; response rate = 39%). We examined caregiver burden, depressive symptoms, financial strain, satisfaction with care, amount and duration of caregiving, life chaos, loneliness, and integration of caregiver with the healthcare team using validated instruments. We also collected caregiver demographic and socioeconomic characteristics and asked caregivers to identify the veteran's condition(s) and provide an assessment of the veteran's functioning. Average caregiver age was 62.2 (standard deviation [SD] = 13.7) and 69.8 (SD = 15.6) for veterans. Among caregivers, 76.7% identified at White, and 79.9% were married to the veteran. Caregivers reported having provided care for an average of 6.4 years and spending on average 9.6 hours per day and 6.6 days per week providing care. Average Zarit Subjective Burden score was 21.8 (SD = 9.4; range = 0-47), which is well above the cutoff for clinically significant burden (>16). Caregivers reported high levels of depressive symptoms; the sample average Center for Epidemiologic Studies Depression 10-item Scale score was 11.5 (SD = 7.1; range = 0-30). Caregivers also reported high levels of loneliness and financial strain. Caregivers who care for veterans with trauma-based comorbidities reported intensive caregiving and significant levels of distress, depressive symptoms, and other negative consequences. These caregivers require comprehensive support services including access to health care, financial assistance, and enhanced respite care. Planned expansion of VA caregiver support has the potential to provide positive benefits for this population and serve as a model for caregiver support programs outside the VA health care system.

Relationship between Distress Related to Caregiver Burden and Physical Activity in Informal Caregivers of Patients with COPD

Chronic obstructive pulmonary disease (COPD) can lead to increased dependence on the informal caregiver and, consequently, to distress associated with caregiving burden. In the general population, higher levels of physical activity (PA) are related to lower distress levels; however, this relationship has been scarcely studied in COPD. This study aimed to explore the relationship between distress and PA in informal caregivers of patients with COPD, and the influence of caregivers’ (age, sex) and patients’ (age, sex, lung function) characteristics and caregiving duration on this relationship. A cross-sectional study was conducted with 50 caregivers (62.7 ± 9.8 years, 88% female; 78% caring for a spouse/partner; 38% caring >40 h/week; patients’ FEV1=45.2 ± 21.3% predicted). Data collection comprised questions related to the caregiving context, distress related to caregiving burden assessed with the Informal Caregiver Burden Assessment Questionnaire (QASCI; total score, 7 subscales), and self-reported PA with the Habitual Physical Activity Questionnaire (HPAQ). Spearman’s correlation coefficient and linear regressions were used. Significant, negative and moderate correlations were found between the QASCI (28.5 ± 19.8) and the HPAQ (5.2 ± 1.3) (ρ=-0.46; p = 0.01); and between the HPAQ and some QASCI subscales (emotional burden ρ=-0.47; implications for personal life ρ=-0.52; financial burden ρ=-0.44; perception of efficacy and control mechanisms ρ=-0.42; p < 0.01). Two linear regression models were tested to predict QASCI total score including as predictors: 1) HPAQ alone (p = 0.001; r2=0.23); 2) HPAQ and caregiving h/week (p < 0.001; r2=0.34). Higher self-reported PA levels are related to decreased levels of distress associated with caregiver burden in COPD caregivers. Duration of caregiving may negatively influence this relationship.

Quality of life, caregiver burden and mental health disorders in primary caregivers of patients with Cirrhosis.

Caregivers are needed for cirrhotic patients as there is progressive decline in cognition and self-care. We intend to study the quality of life (QOL), psychosocial burden and prevalence of mental health disorders among caregivers. Cross-sectional study where caregivers, defined as person who takes responsibility of providing care to patient, of cirrhotic patients were included. Short form 36 health survey (SF-36) to assess QOL, Zarit Burdern Index12 (ZBI) for caregiver burden (CB). Patient Health Questionnaire (PHQ) identified depression and Generalized Anxiety Disorder (GAD-7) questionnaires, anxiety. Of 132 caregivers, mean age of caregiver was 41.2±10.3years, with female preponderance. Mean MELD was 21.4±7, majority belonged to CHILD C. Comparing the SF36 score of caregivers to normal population showed lower level of QOL for caregivers. Mean ZBI score - 14±5.8. Mean GAD score - 8.1±5.1, 54 (41%) had anxiety. Mean PHQ score - 7.8±5.2, 45 (34%) had depression. Alcoholic cirrhosis, history of hepatic encephalopathy (HE), Anxiety, Depression and recidivism predicted CB. Treatment costs (ODDS-1.15), alcoholic cirrhosis (ODDS -8.9), history of HE (ODDS-7.5) and caregiver duration (ODDS-0.25) predicted anxiety. Treatment costs (ODDS-1.5), caregiver age (ODDS-0.87), spouse as caregiver (ODDS-10.9) and higher education (ODDS-0.79) predicted depression. Caregivers of cirrhotic patients have high prevalence of CB with low QOL and high incidence of anxiety and depression, compared with the general population. Alcoholism in patients precipitates while higher education helps cope up with these disorders.

Factors associated with caregiving appraisal of informal caregivers: A systematic review.

To identify factors associated with the caregiving appraisal of informal caregivers. Caregiving appraisal, the cognitive evaluation of the caregiving situation, is an essential factor in determining positive or negative caregiving outcomes. Identifying factors associated with appraisal is fundamental for designing effective health promotion strategies. A systematic review. PubMed, EMBASE, CINAHL, PsycINFO, Social Sciences Citation Index, Scopus, CNKI and Wanfang Database were searched for papers published from 1984 to December 2018. Keywords related to informal caregivers' caregiving appraisal were used. Cross-sectional and cohort studies were included. The Quality Assessment and Validity Tool for Correlational Studies, and the CASP Cohort Study Checklist were used for quality assessment. Descriptive and narrative synthesis were used to analyse data. Social ecological model was used for classifying the associated factors into different levels. The PRISMA checklist was followed. Forty studies were included. The quality of the studies was moderate to high. Data were organised into three levels (individual, interpersonal and community level) and categorised into modifiable factors (e.g. patient behavioural problems, caregiver self-efficacy and social support) and nonmodifiable factors (e.g. caregiving duration, gender and education). The majority of studies have investigated the factors at the individual level. There are inconsistencies in the understanding of caregiving appraisal, and consensus is needed for conceptual clarity. Caregiving appraisal is associated with three levels of factors. These modifiable factors provide evidence for designing evidence-based interventions, and the nonmodifiable factors help identify confounding factors in assessment and appraisal. Nurses are the best-placed healthcare professionals to support informal caregivers. The three levels of associated factors and the interactive approaches provide direction for informing clinical nursing practice. They also provide evidence for healthcare researchers and policymakers to develop interventions and theoretical perspectives and to better allocate healthcare resources.

Concomitant Benefits of an Auricular Acupressure Intervention for Women With Cancer on Family Caregiver Sleep Quality.

Sleep disturbance is a frequent and significant problem challenge for family caregivers of patients with cancer. A previously tested 6-week auricular acupressure intervention was found to reduce symptom burden in women with cancer. It is possible that such an intervention has a concomitant benefit for family caregivers. The aim of this study was to explore if the effects of an auricular acupressure intervention on major symptoms experienced by women with ovarian cancer improves the sleep quality of family caregivers. A quasi-randomized controlled trial with a repeated-measures design was used. Family caregivers (n = 68) of cancer patients were recruited and completed the Pittsburgh Sleep Quality Index on 4 occasions. Demographic information included age, sex, duration of caring role, and relationship to the patient. Family members with a longer duration of caregiving reported more sleep disturbance at baseline. As the symptom burden of treated women decreased, their family caregivers reported improved Pittsburgh Sleep Quality Index scores at 4 weeks (time 2; Cohen d = 1.075) and 6 weeks (time 3; Cohen d = 1.022). Reducing the symptom burden of patients with cancer can improve the sleep quality of family caregivers. Auricular acupressure is a noninvasive and easy-to-apply intervention that can be applied by caregivers to assist their family member. Nursing staff can implement and test the acupressure intervention into their clinical practice and better support family-based strategies and interventions. Further studies with larger samples are needed to confirm our findings.

Prevalence and Associated Factors of Depressive Disorder in Caregivers of Individuals With Parkinson Disease.

Parkinson disease (PD) is a debilitating neurodegenerative disease. Caring for an individual with PD can have a variety of negative physical and psychological effects on caregivers which may challenge their ability to continue in their caretaking role. The aim of this study was to assess the prevalence and associated factors of depressive disorders in caregivers of individuals with PD using standardized instruments. This study used a cross-sectional design with consecutive sampling. Study participants were recruited from the neurological ward or neurological outpatient clinic of a medical center from August 2018 to July 2019. Caregivers of persons with PD were enrolled and assessed using the Mini International Neuropsychiatric Interview, Hamilton Depression Rating Scale, Hamilton Anxiety Rating Scale, Beck Hopelessness Scale, Brief Fatigue Inventory, Connor-Davidson Resilience Scale, and Big Five Inventory-10. Of the 162 caregivers that completed the study, 67.3% (n = 109) were females. The most common psychiatric diagnosis was depressive disorder (11.1%), followed by insomnia disorder (7.4%) and anxiety disorder not otherwise specified (4.3%); 28% of the caregivers had a psychiatric diagnosis. Using logistic regression analysis, it was found that duration of caregiving (odds ratio [OR] = 1.28; 95% CI, 1.05-1.58), severity of anxiety (OR = 1.86; 95% CI, 1.36-2.53), and severity of fatigue (OR = 1.08; 95% CI, 1.01-1.16) were 3 significant associated factors for the development of depression. Depression was the most prevalent psychiatric diagnosis in caregivers of people with PD. Early diagnosis of these caregivers is crucial to the offering of suitable support and treatment and might improve caregivers' quality of life.

Applying Artificial Intelligence to Predict Self-Reported Poor Health Among Black and Hispanic Caregivers with Mild Cognitive Impairment.

We applied artificial intelligence techniques to build correlate models that predict general poor health in a national sample of caregivers with mild cognitive impairment (MCI). Our application of deep learning identified age, duration of caregiving, amount of alcohol intake, weight, myocardial infarction (MI) and frequency of MCI symptoms for Blacks and Hispanics whereas frequency of MCI symptoms, income, weight, coronary heart disease (CHD), age, and use of e-cigarette for the others as the strongest correlates of poor health among 81 variables entered. The application of artificial intelligence efficiently provided intervention strategies for Black and Hispanic caregivers with MCI.

Parkinson's Disease Caregiver Strain in Singapore.

Background: Caregiver strain is recognized globally with Parkinson's disease (PD). Comparatively little is understood about caregiver burden and strain in Asia.Objective: To investigate caregiver strain for families living with PD in Singapore, in light of international data.Methods: Ninety-four caregivers were recruited via people living with idiopathic PD in Singapore. Caregiver strain was assessed using the Zarit Burden Interview (ZBI); health status was assessing using the Cumulative Illness Rating Scale for Geriatrics (CIRS-G). PD disability measures were the Unified Parkinson's Disease Rating Scale (UPDRS) and modified Hoehn and Yahr (1967) Scale.Results: Primary caregivers of people living with PD in Singapore were mostly cohabiting spouses, partners or offspring. Around half employed foreign domestic helpers. Mean caregiving duration was 5.9 years with an average of eight hours per day spent in caregiving roles. Most care providers were comparatively healthy. Caregivers reported significant levels of strain which increased with greater level of disability (r = 0.36, n = 94, p < 0.001). Associations were significant between caregiver strain and scores on the UPDRS mentation, behavior, and mood subscales [r = 0.46, n = 94, p < 0.001, 95% CI (0.28, 0.60)]. High scores on the UPDRS activities of daily living subscale were associated with caregiver strain [r = 0.50, n = 94, p < 0.001, CI (0.33, 0.64)].Conclusion: Most caregivers in this Singapore sample reported high levels of strain, despite comparatively good physical function. Caregiver strain in PD spans geopolitical and cultural boundaries and correlates with disease severity. These results support the need for better early recognition, education, and support for caregivers of people living with PD.

Effect of instrumental support on distress among family caregivers: Findings from a nationally representative study.

A priority focus on palliative and supportive care is helping the 43.5 million caregivers who care for individuals with serious illness. Lacking support may lead to caregiver distress and poorer care delivery to patients with serious illness. We examined the potential of instrumental support (assistance with material and task performance) to mitigate distress among caregivers. We analyzed data from the nationally representative Health Information National Trends Survey (HINTS V2, 2018). Informal/family caregivers were identified in HINTS V2 if they indicated they were caring for or making healthcare decisions for another adult with a health problem. We used the PROMIS® instrumental support four-item short-form T-scores and the Patient Health Questionnaire (PHQ-4) for distress. We examined multivariable linear regression models for associations between distress and instrumental support, adjusted for sampling weights, socio-demographics, and caregiving variables (care recipient health condition(s), years caregiving (≥2), relationship to care recipient, and caregiver burden). We examined interactions between burden and instrumental support on caregiver distress level. Our analyses included 311 caregivers (64.8% female, 64.9% non-Hispanic White). The unweighted mean instrumental support T-score was 50.4 (SD = 10.6, range = 29.3-63.3); weighted mean was 51.2 (SE = 1.00). Lower instrumental support (p < 0.01), younger caregiver age (p < 0.04), higher caregiving duration (p = 0.008), and caregiver unemployment (p = 0.006) were significantly associated with higher caregiver distress. Mean instrumental support scores by distress levels were 52.3 (within normal limits), 49.4 (mild), 48.9 (moderate), and 39.7 (severe). The association between instrumental support and distress did not differ by caregiver burden level. Poor instrumental support is associated with high distress among caregivers, suggesting the need for palliative and supportive care interventions to help caregivers leverage instrumental support.

Social support and depressive symptoms among family caregivers of older people with disabilities in four provinces of urban China: the mediating role of caregiver burden

BackgroundTo examine the relationship between social support and depressive symptoms of Chinese family caregivers of older people with disabilities, and to evaluate the role of caregiver burden as a potential mediator of that relationship.MethodsA survey questionnaire was completed face-to-face by 567 primary family caregivers of older people with disabilities in four provinces in China. Covariates that may affect depressive symptoms, such as the characteristics of disabled people (socio-economic factors, functional and cognitive capacity) and caregivers (caregiver duration and self-rated health of caregivers) were collected. Social support was measured by the Multidimensional Scale of Perceived Social Support (MSPSS); depressive symptoms were assessed by the shortened 10 item version of Center for Epidemiological Studies Depression scale (CES-D); and the caregiver burden was assessed by the Zarit Burden Interview (ZBI).ResultsThe prevalence of depressive symptoms among caregivers was 37.7%. Higher levels of social support was negatively associated with lower depressive symptoms. This relationship was partially mediated by the caregiver burden, where higher levels of the caregiver burden were negatively associated with depressive symptoms. Furthermore, caregivers who were women, spent extended time in caregiving and were in poor health, reported significantly higher depressive symptoms.ConclusionsOur results indicated that social support was negatively associated with depressive symptoms in family caregivers and in the caregiver burden. The caregiver burden partially mediated the social support-depressive symptoms association. Interventions for family caregivers should include increasing social support, health monitoring and structured interventions to reduce the caregiver burden and attenuate family caregivers’ depressive symptoms.

Effect of Variables on Quality of Life among Caregivers of Patients Undergoing Peritoneal Dialysis.

Background:Most of the studies carried out abroad showed the effect of one or two variables on the constructs of burden, coping strategies, and quality of life (QOL) but nil in India context. These constructs change by cultural factors. The evaluation of variables influencing these constructs may be helpful in fine tuning the interventions to reduce the burden and to improve the QOL of caregivers of patients undergoing peritoneal dialysis (PD).Aim:The aim of this study was to investigate the impact of demographic, social and clinical variables on burden, coping strategies, and QOL in caregivers of patients undergoing PD.Materials and Methods:In this prospective study, we recruited 100 caregivers of patients undergoing PD and made assessment on burden, coping strategies, and QOL and evaluated the effect of demographic, social, and clinical variables on these constructs.Results:None of the studied variables showed effect on burden and coping strategies. Age, gender, duration of caregiving, presence of chronic disease, and duration of the presence of chronic disease showed a significant effect on QOL.Conclusion:The impact of demographic and clinical variables on QOL suggests these variables should be given adequate attention while developing interventions for alleviating the burden and improving the QOL of caregivers of patients undergoing PD.

State of household need for caregivers and determinants of psychological burden among caregivers of older people in Thailand: An analysis from national surveys on older persons.

ObjectivesTo explore the levels and trends of household need for caregivers of older people and to explore the impact of potential determinants of psychological burden among caregivers of older people in Thailand.MethodsThe secondary data analysis was performed using the Survey of Older Persons in Thailand 2007, 2011, and 2014 datasets which conducted by the National Statistical Office of Thailand. The household need for caregivers of older persons refers to having at least one older person in the household who needs a caregiver for assistance with activities of daily living. Caregiver mental health, which is confined to the available 2011 data, is defined as a state of psychological burden. Ordinal logistic regression models were used to explore the impact of potential determinants of psychological caregiver burden.ResultsThe household need for caregivers in Thailand tends to be increasing, from 5.0% in 2007 to 6.6% in 2014. The levels of the household need for caregivers were significantly higher in urban areas, Bangkok, and high socioeconomic households. In terms of psychological caregiver burden, the Thai Mental Health Indicators in 2011 produced, on average, a fair level of mental health, but one-fourth of caregivers had poor mental health. Duration of care for older people, household wealth, and functional dependency significantly predict total caregiver burden. Household characteristics are vital in predicting psychological caregiver burden, and the adjusted effect of the fifth quintile of household wealth was high (odds ratio = 2.34; 95% confidence interval = 1.47–3.73).ConclusionThe increasing need for caregiving in households with an older person can lead to a higher caregiver burden, particularly among those caregivers who care for dependent older people in poor households. Longer duration of caregiving is a factor that mitigates this burden.

Internal and external resources, tiredness and the subjective well-being of family caregivers of older adults: a case study from western Thailand, Southeast Asia.

This study examined the effects of several aspects of care-giving on the subjective well-being (SWB) of family caregivers of older adults. These aspects were comprised of external resources including social support, affection, and internal resources including confidence, positive appraisal and coping strategies, and tiredness. The level of happiness (0-10) was used as the gauge of SWB. The data were from a cross-sectional study of 270 primary family caregivers in western Thailand. Multiple regression models controlling for age, gender, kinship to care for recipients, self-rated health, duration and hours of care-giving were estimated. Both social support in terms of appreciation and admiration for care-giving, as opposed to such care being considered a caregivers' duty, as well as inner strength derived from a positive attitude and self-perceived ability in care-giving were positively associated with SWB. Tiredness had a significant negative association with SWB. The implications of these findings for policy and intervention programs are discussed.

THE EFFECT OF ACTIVITIES OF DAILY LIVING ON FAMILY CAREGIVER SOCIAL ISOLATION

Social isolation has been shown to associate with negative health outcomes including depression and stress. For family caregivers of older adults, the demands on the caregiver often are associated with increasing feelings of loneliness and decreased social contact. The degree to which the caregiver’s social isolation is related to the complexity of the caregiving situation remains unknown. Through a cross-sectional analysis of 526 family caregivers from the Family Caregiver Alliance client record database, an association has been established between care recipient functional decline and caregiver social isolation. Social isolation was measured through the Lubben Social Network Scale and functional decline was measured through ADL/IADL reporting. Covariates controlled for in the analysis included caregiver ethnicity, duration of caregiving, adult child status, caregiver education, care recipient income, and hours per week caregiving. Family caregivers of care recipients with higher functional decline experienced elevated odds of social isolation as compared to family caregivers of care recipients with little to no functional decline. The results from this study highlight the need for medical personnel and non-profit actors to anticipate social isolation as a risk factor for family caregivers of older adults given the care recipient is experiencing functional decline.

CHOICE MODERATES RELATIONSHIPS BETWEEN LEVEL AND DURATION OF CARE AND THE HEALTH IMPACT OF CARING FOR AN OLDER PARENT

The perception of choice in the caregiving role has emerged as a key theme in qualitative gerontological caregiving research but few studies have examined choice quantitatively. The aim of our study was to test whether perceived choice moderated the relation between level and duration of care and the health impact of caring for a parent over the age of 65. We tested these questions in a series of structural equation models using existing data from the National Alliance for Caregiving, Caregiving in the U.S. 2015 Survey. We found that for adult-child caregivers of parents who reported a lack of choice in taking on the caregiving role, greater responsibilities for assistance with activities of daily living (ADLs) (p<0.01) and instrumental ADLS (p<0.01), and greater time providing care (p<0.05) predicted the negative impact of caregiving on caregiver health. The number of ADLs performed also predicted the emotional stress of caregiving for parents (p<0.01). Conversely, for caregivers who reported that they did have a choice in taking on the caregiving role, level and duration of care were not significantly related to the impact of caregiving on caregiver health, or the emotional stress of caregiving. Women were significantly more likely to report a lack of choice than men (p<0.05). Additional research is needed to explore the meaning of choice, and the ways in which choice may be especially constrained for daughters who care for older adults, in order to develop interventions to ameliorate the potentially deleterious health effects of caregiving on adult-children.

Determinants of Burden and Satisfaction in Informal Caregivers: Two Sides of the Same Coin? The CUIDAR-SE Study

The aim of this study conducted in Spain was to analyze and compare burden, severe burden, and satisfaction among informal caregivers in relation to health-related quality of life (HRQoL), type and duration of caregiving, perceived social support, and use of social and health care services. We performed multivariate analyses to identify variables associated with caregiver burden, severe burden, and satisfaction with caregiving, stratified by gender. The results showed that secondary or third-level education, performance of ungratifying tasks, negative coping with caregiving, and more years providing care were associated with greater burden. Variables with protective effect were better perceived health of the person being cared for, better caregiver HRQoL, and high perceived social support. Women were 75% more likely to experience severe burden compared with male caregivers. Burden was reduced by high perceived social support in the case of women and by high caregiver HRQoL in the case of men. The main determinant of caregiving satisfaction for both men and women was perceived social support (OR = 3.11 and OR = 6.64). This study shows the need for interventions that promote gender equality and social support as a means of relieving burden and severe burden and improving satisfaction in both male and female caregivers.

Caregiving tasks and unmet supportive care needs of family caregivers: A U.S. population-based study

ObjectiveTo describe the type of care provided by a nationally-representative sample of informal caregivers, the frequency of unmet supportive care needs, and examine characteristics associated with unmet needs. MethodsUsing data from the Health Information National Trends Survey, we identified caregivers of an adult care recipient. Descriptive statistics examined support provided by caregivers for activities of daily living (ADLs) and instrumental activities of daily living (IADLs) and caregiver perceptions of their needs in five areas: medical/nursing tasks, accessing services, respite care, support groups, and counseling for caregivers. Bivariate statistics examined sociodemographic and caregiver characteristics associated with each need. ResultsAmong 316 caregivers, 30.9% reported at least one unmet supportive care need. Caregivers most often provided support for 0–2 ADLs and 5–7 IADLs. Younger age and longer duration of time caregiving were associated with unmet supportive care needs for medical/nursing training (p = 0.02 and 0.04, respectively). Caregivers providing assistance with more ADLs reported needs for respite care support (p=0.03). ConclusionSubgroups of caregivers that may be most vulnerable with greater unmet supportive care needs are those that are younger, have provided care for longer, and those assisting with more ADLs. Future research should explore these factors to inform intervention development.

CN55 - Investigating the factors related to primary caregivers’ burden in oncology patients in Greece

BackgroundFamily caregivers of cancer patients report high burden leading to poor emotional and physical health. Knowledge of predisposing factors could contribute to its prevention or early detection. The aim of this study was to identify the factors related to caregiver burden among caregivers of cancer patients. Methods90 cancer patients hospitalised in two oncological wards in Crete, Greece and their primary caregivers (PCs) were included in the study. They both provided their demographics, while PCs completed the Bakas Caregiving Outcomes Scale (BCOS), comprising 15 self-rated items (7-point response scale with reduced BCOS scores implying higher burden) and the Hospital Anxiety and Depression Scale (HADS), comprising 14 self-rated items in a 4-point scale (0-3). ResultsMost patients were male (52.2%) and most PCs were female (67.8%), aged 50 to 74 years old (52.2% and 54.4% respectively). The majority of PCs (44.3%) were spouses. The mean of burden using the BCOS was 56.7 (SD 10.9) (range 22-100), 75.6% experienced no burden (total score > 52.5), while 24.4% reported high burden (total score < 52.5). High level of anxiety (≥ 11) using the HADS was reported by 55.6% of PCs and high level of depression (≥ 11) by 20%. The correlations between BCOS and HAD-Anxiety (r=-0.401, p<0.001) and BCOS and HAD-Depression (r=-0.402, p<0.001) were negatively moderate. Older age PCs appear to experience higher burden (r=-0.278, p=0.008) and depression (r=0.372, p<0.001), while the duration of caregiving also imposes more anxiety (r=-0.322, p=0.002) and depression (r=0.262, p=0.013). On the other hand, depression correlates negatively with the educational background of both patients (r=-0.247, p=0,019) and caregivers (r=-0.283, p=0.007). ConclusionsPrimary caregiver anxiety, depression, age, the duration of caregiving and the patient and caregiver educational background are factors related to caregiver burden. Larger sample studies are needed to better identify the factors affecting caregiver burden. Legal entity responsible for the studyThe authors. FundingHas not received any funding. DisclosureAll authors have declared no conflicts of interest.