Sample Of Informal Caregivers Research Articles

“It’s a delicate dance”: How informal caregivers experience the role and responsibilities of supporting someone living with a lower-grade glioma

Abstract Background People with lower-grade gliomas (LGG) often require long-term support with a condition that causes substantial symptom burden and is likely to progress. Partners, family, and friends often become informal caregivers (IC), but the types of support they provide, and their experiences of this, have not been well investigated. We aimed to understand how ICs experience the role and responsibilities of supporting people with LGG. Methods This descriptive qualitative study used semistructured interviews to explore the role and responsibilities of a purposive sample of ICs across the United Kingdom, who currently, or in the past 5 years, support(ed) someone with an LGG. Interviews were audio-recorded and transcribed, and an inductive thematic analysis was conducted. Results Nineteen ICs were interviewed (mean age 54.6 years; 5 males/14 females). While most participants spoke about “Being a ‘carer’,” the level of care provided varied. Participants conveyed their experiences with “Adjusting for cognitive difficulties,” “Emotional protection,” “Supporting participation in daily life,” and “Healthcare advocacy.” ICs often felt “abandoned” by healthcare services to provide required care themselves, and reported experiences with “Balancing the challenges of caregiving,” including conflict with work/childcare. Issues around “Maintaining the care recipient’s independence” were interwoven throughout. Conclusions ICs of people with LGG provide wide-ranging support to help manage the consequences of the illness. Consideration of ways to help ICs with the challenges of fulfilling this role, particularly, balancing support provision without inhibiting the care recipient’s independence, could help improve outcomes for ICs and people with LGG.

The role of hyperarousal for understanding the associations between sleep problems and emotional symptoms in family caregivers of people with dementia. A network analysis approach.

Caregiving for a family member with dementia is a stressful situation that has been associated with symptoms of depression, anxiety, and insomnia. Several models have highlighted the role of hyperarousal for understanding sleep disorders; however, there is little evidence about how insomnia, depression, and anxiety are linked together. Network analysis could help to explore the mechanisms underlying the associations between these disorders. A total of 368 community-dwelling family caregivers of a person with dementia took part in the study. The depression-anxiety-sleep symptoms network was composed of 26 items using the R package qgraph to estimate and visualise the network. The results showed that the strongest symptoms in the network were shakiness, tension, restlessness, nervousness, and restless sleep. Tension was the symptom with the most predictive power, restless sleep was the most important shortcut node in the connection between other symptoms. The central stability coefficient showed adequate indices. The strength of hyperarousal symptoms suggested a prominent role of this variable. Our results invite the hypothesis that sleep problems may trigger symptoms specific to depression via fatigue or energy loss. This study is the first to examine the network structure of the associations between the symptoms of depression, anxiety, and insomnia in a sample of informal caregivers, and to explore the role of hyperarousal in this network.

P117: The role of hyperarousal for understanding the association among sleep problems and emotional symptoms in family caregivers of people with dementia. A network analysis approach.

Objective:Caregiving for a family member with dementia is a highly stressful situation that may last up to several years, and has been associated with symptoms of depression, anxiety, and sleep problems. These disorders frequently co-occur, with previous studies suggesting a bidirectional relationship between sleep and psychiatric disorders (i.e., anxiety and depression). Several models have highlighted the role of hyperarousal for understanding sleep disorders; however, there is little evidence about how sleep problems, depression and anxiety are linked together. Network analysis (NA) could help exploring the mechanisms underlying the associations between anxiety, depression, and sleep disturbances.Methods:Participants were 368 family caregivers of a person with dementia. The depression-anxiety-sleep symptoms network was composed of 26 items. All the analyses were done using R (version 4.1.1).Results:Symptoms of tension, shakiness, restlessness, nervousness, and anxiety were strongly connected with the symptom feeling depressed. Symptoms of insomnia were connected to trouble focusing, which was linked to feeling that everything is an effort and apathy. The strongest nodes in the network were shakiness, tension, restlessness, nervousness, and restless sleep. Tension was the node with the most predictive power, while restless sleep was the node with the highest betweenness. Central stability coefficient showed adequate indices.Conclusion:Hyperarousal symptoms (e.g., tension, restlessness) were the most strongly connected symptoms and showed close connection with symptoms of depression. The strength of these nodes suggests a prominent role of hyperarousal to maintaining, or even fueling, anxiety and depressive symptoms. Besides, our results invite the hypothesis that sleep problems may trigger symptoms specific to depression via fatigue or energy loss. Even though this study is limited by its cross-sectional design, it is the first to examine the network structure of the associations between symptoms of depression, anxiety, and sleep problems in a sample of informal caregivers, and to explore the role of hyperarousal in this network. Future studies should explore the temporal association between symptoms and the network dynamics, including response to the potential treatments.

Mind-Body Practice and Family Caregivers' Subjective Well-Being: Findings From the Midlife in the United States (MIDUS) Study.

Objectives: Informal caregiving has been associated with higher stress and lower levels of subjective well-being. Mind-body practices including yoga, tai chi, and Pilates also incorporate stress reducing activities. The current study aimed to examine the association between mind-body practice and subjective well-being among informal family caregivers. Methods: A sample of informal caregivers were identified in the Midlife in the United States study (N = 506, M ± SDage = 56 ± 11, 67% women). We coded mind-body practice into three categories, including regular practice (participating in one or more of them "a lot" or "often"), irregular (participating "sometimes" and "rarely") and no practice ("never"). Subjective well-being was measured using the 5-item global life satisfaction scale and the 9-item mindfulness scale. We used multiple linear regression models to examine associations between mind-body practice and caregivers' subjective well-being, controlling for covariates of sociodemographic factors, health, functional status, and caregiving characteristics. Results: Regular practice was associated with both better mindfulness-related well-being (b = 2.26, p < .05) and better life satisfaction (b = 0.43, p < .05), after controlling for covariates. Discussion: Future research should examine whether there is a selection effect of caregivers with higher well-being being more likely to choose these activities, and/or if mind-body practices are effective non-pharmacological interventions to improve family caregivers' quality of life.

The Value of Technology to Support Dyadic Caregiving for Individuals Living With Heart Failure: Qualitative Descriptive Study

BackgroundThe demand for health services to meet the chronic health needs of the aging population is significant and remains unmet because of the limited supply of clinical resources. Specifically, in managing heart failure (HF), digital health sought to address this gap during the COVID-19 pandemic but highlighted an access issue for those who could not use technology-mediated health care services without the support of their informal caregivers (ICs). The complexity of managing HF symptoms and recurrent exacerbations requires many patients to comanage their illness with their ICs in a care dyad, working together to optimize patient outcomes and health-related quality of life. However, most HF programs have missed the opportunity to consider the dyadic perspective despite interdependencies on HF outcomes.ObjectiveThis study aims to characterize the value of technology in supporting caregiving for individuals living with HF.MethodsMotivated by an observed unique pattern of engagement in patients enrolled in our Medly HF management program at the Peter Munk Cardiac Centre in Toronto, Canada, we conducted 20 semistructured interviews with a convenience sample of ICs. All interviews were analyzed using the iterative refinement of a codeveloped codebook. The team maintained reflexivity journals to reflect the impact of their positionality on their coding. Themes were first derived deductively using HF typologies (patient-oriented dyads, caregiver-oriented dyads, and collaboratively oriented dyads) and then inductively refined and recategorized based on concepts from the van Houtven et al framework.ResultsWe believe that there is a need to formally and intentionally expand HF technologies to include dyadic needs and goals. We suggest defining 3 opportunities in which value can be added to technological design. First, identify how technology may be leveraged to increase psychological bandwidth by reducing uncertainty and providing peace of mind. We found that actionable feedback was highly desired by both partners. Second, develop technology that can serve as a member of the dyad’s support system. In our experience, automated prompts for patients to take measurements can mimic the support typically provided by ICs and ease their workload. Third, consider how technology can mitigate the dyad’s clinical knowledge requirements and learning curve. Our approach includes real-time actionable feedback paired with a human-in-the-loop, nurse-led model of care.ConclusionsOur findings identified a need to focus on improving the dyadic experience as a whole by building IC functionality into digital health self-management interventions. Through a shared model of care that supports the role of the patient in their own HF management, includes ICs to expand and enhance the patient’s capacity to care, and acknowledges the need of ICs to care for themselves, we anticipate improved outcomes for both partners.

Food Insecurity in a Sample of Informal Caregivers in 4 Southern US States.

IntroductionGiven the disproportionate burden of food insecurity in the southern US states and the high prevalence of caregiving in this area, we assessed caregiving-related predictors of food insecurity among caregivers in 4 southern US states.MethodsWe used data from the 2015 Behavioral Risk Factor Surveillance System (BRFSS) for individuals aged 18 years or older who resided in Alabama, Louisiana, Mississippi, and Tennessee to assess the association between caregiving status and food insecurity, accounting for the complex survey design of BRFSS. Caregiving-related predictors of food insecurity were identified by using multivariable logistic regression.ResultsWeighted counts of caregivers and noncaregivers were 356,198 and 652,737, respectively. Prevalence of food insecurity was higher among caregivers than noncaregivers (35.9% vs 25.9%). Adjusting for sociodemographic predictors, caregivers had 56% (95% CI, 1.30–1.87; P < .001) higher odds of food insecurity than noncaregivers. Among caregivers, those caring for a spouse or a partner (adjusted odds ratio [aOR] = 1.7; 95% CI, 1.02–2.85; P = .04) had significantly higher odds of food insecurity compared with those caring for parents or parents-in-law. Caregivers who had been caregiving for 6 months to 2 years had higher odds of food insecurity compared with those who had been caregiving for less than 6 months (aOR = 1.88; 95% CI, 1.12–3.16; P = .02). Caregivers who reported a need for support services had higher odds of food insecurity compared with those who did not (aOR = 3.38; 95% CI, 2.19–5.21; P < .001). Caregivers caring for people with musculoskeletal conditions, compared with people with neurologic conditions, had higher odds of food insecurity (aOR = 3.47; 95% CI, 1.52–7.91; P = .003).ConclusionCaregiver screening for food insecurity in health care settings and linkage to appropriate food and caregiving support resources should be prioritized by future health policies.

HPR72 Predictors of Food Insecurity in a Sample of Informal Caregivers in Southern States in the United States

Southern US states bear a disproportionate burden of food insecurity (FI). Prevalence and predictors of FI among informal caregivers is not well understood. This study estimated the prevalence and sociodemographic and caregiving related predictors of FI among caregivers in Alabama (AL), Mississippi (MS), Tennessee (TN) and Louisiana (LA). Data from 2015 Behavioral Risk Factor Surveillance System (BRFSS) survey was used. Individuals aged 18 years or higher and residing in AL, MS, TN, and LA were included in the sample.

Sleep Quality Among Informal Caregivers During the COVID-19 Pandemic: A Cross-Sectional Study.

Sleep is an integral component of health. The impact of the COVID-19 pandemic on sleep quality among informal caregivers, individuals who provide unpaid care or assistance to family members or friends, assisting older adults is not well understood. Therefore, informal caregivers in the United States providing care for individuals aged 50+ were recruited via Amazon’s Mechanical Turk, an online platform for enrolling study participants into social and behavioral science research, to complete an online survey. The sample of informal caregivers (n = 835) was 69% male and 55% non-Hispanic. Multivariable linear regression models were constructed to assess the associations between sleep disturbance scores (SDS) and sleep-related impairment scores (SIS) and caregiving-related measures (hours caregiving/week, length of time spent caregiving, and caregiver burden), demographics, and region of the United States. The analysis determined that Black (β = 2.6, 95% CI [−4.3, −0.9]) and Asian informal caregivers (β = −1.8, 95% CI [−3.4, −0.3]) had lower mean SIS than White caregivers, the referent group. In addition, increasing caregiver burden was associated with increased SDS (β = 0.8, 95% CI [0.6, 1.0]) and SIS (β = 1.3, 95% CI [0.7, 1.6]). In conclusion, higher caregiver burden was associated with higher SIS and SDS, suggesting that informal caregivers' sleep should be assessed, and when needed interventions should be offered.

Validating the Psychosocial Functioning during COVID-19 Questionnaire among a Sample of Informal Caregivers.

The COVID-19 pandemic has had a dramatic impact on global economies and societies. Although social distancing policies are needed to contain the spread and impact of COVID-19, they also impose a psychological and economic burden on people who are already experiencing increased distress such as caregivers. Yet, few measures have been developed and validated to measure the psychosocial impact of COVID-19. Utilizing item response theory (IRT), the purpose of this study was to develop and psychometrically validate a measure of psychosocial functioning—the Psychosocial Functioning during COVID-19 (PFC-19) Questionnaire—to assess changes in social interaction, mental health, health behavior, and global functioning among a sample of informal caregivers during the COVID-19 pandemic. The analytic sample (n = 733) was recruited from Amazon Mechanic Turk (MTurk) (69% male, 55% white). Results suggest a two-factor measure, assessing global functioning (14 items) and affective response (8 items), with strong evidence for reliability, validity, and dimensionality. Future research should replicate this factor structure in other samples.

SUPPORT AND EDUCATION NEED FULFILLMENT IN INFORMAL DEMENTIA CAREGIVERS

Caregivers vary widely in their need for and utilization of support services, and there are many reasons for this (e.g., time or financial cost, distance, perception of need). This study explored the disparity between services that are desired and those that are utilized, and examined the hypothesis that unmet needs are a determinant of caregiver burden. An online sample of informal caregivers (N=151) responded to a questionnaire containing a list of common caregiver support services: sharing duties, professional transportation, respite care, non-profit community organizations, financial counseling, caregiver education programs, support groups. Participants were presented with a list of support services and information and asked to indicate A) which they desired and B) which they had received while providing care. Respite care and financial counseling were identified as support that caregivers were unable to obtain, while caregiving education and family/friend support were most commonly fulfilled. A linear regression model controlling for demographic variables was constructed. Unfulfilled support needs accounted for 40.6% of variance in caregiver burden, however the final model included only total ratio of unfulfilled services, transportation services, stress management skills, professional treatment for the caregiver, and behavioral management skills. Results highlight the unique contribution of certain support services in burden reduction. These findings imply a need to improve accessibility to caregiver support, especially those which require payment (e.g., transportation aids and mental healthcare). Further implications and actionable changes related to caregiver support services are discussed.

Abstract TP312: Developing a Mobile Application for Stroke Informal Caregivers

Background: Following stroke, many survivors require assistance with activities of daily living from untrained individuals. These informal caregivers assume multiple new responsibilities, which can generate stress, especially when their own needs are inadequately addressed during a patient’s recovery. Methods: A nationwide survey mailed to 11,720 stroke survivors through the National Stroke Association with a cover letter asking them to give the IRB approved informed consent and survey to their informal caregiver, if applicable. The 17 question survey asked caregivers about demographics, if they own a cell/smart phone, and the caregiver’s opinion about what resources in a mobile app (if any) would be useful – namely: 1) scheduling multiple tasks, 2) finding information about stroke resources, 3) finding local resources, 4) tracking fitness and diet, and 5) communication with their stroke survivor. The survey was developed using focus groups in 2 states. For all questions logistic regression determined if there were racial, gender, or age disparities. Results: 396 stroke caregivers [(299 (76%) female, 96 (24%) African-American, 42 (11%) Hispanic/Latino, and 210 (53%) Caucasian], aged 20-99 years (mean 59.5 ± 13.3) returned surveys; 96% owned a cell phone; 60% of all caregivers owned a smart phone. Caregivers in this sample reported features of the app to be important including: doctor/rehab appointments (80%, 95% CI, 76-84%), links to trustworthy medical information (84%, 95% CI 80-87%), stroke support groups in my area (81%, 95% CI 77-85%), exercises (76%, 95% CI 71-80%), and a touch screen with useful phrases (76%, 95% CI 71-80%). When examining the utility of the 5 app resources (outlined above), Latino (88%-74%) and African-American (84%-77%) caregivers reported the highest rate of usefulness across the 5 aspects). As age increased, the caregivers’ reporting of mobile app usefulness decreased ( p &lt; 0.05). However, in the oldest group (63+), 67-79% of caregivers reported that all 5 resources would be useful in a mobile app. Conclusions: Implementation of a mobile app unique to stroke caregivers with resources is desired by this diverse, national sample of informal caregivers and holds potential to alleviate stress and improve patient’s recovery.

Subjective burden among spousal and adult-child informal caregivers of older adults: results from a longitudinal cohort study.

BackgroundPressures on informal caregivers are likely to increase due to increasing life expectancy and health care costs, which stresses the importance of prevention of subjective burden. The present study examined the correlates of overall subjective burden and multiple burden dimensions among spousal and adult-child caregivers of Dutch older adults, both cross-sectional and longitudinal (12-months follow-up).MethodsIn 2010 and 2011 baseline and follow-up data was collected in a sample of informal caregivers and care recipients in the Northern provinces of the Netherlands. Subjective burden included 7 burden dimensions and a summary score for overall subjective burden, based on the Care-Related Quality of Life Instrument (CarerQoL-7D). Objective stressors were the time investment in caregiving (hours of household care, personal care, practical care) and the health situation of the care recipient, including multimorbidity, functional limitations (Katz Index of Independence Basic Activities of Daily Living (ADL) and Instrumental Activities of Daily Living (IADL), and cognitive functioning problems (EQ-5D + C). Correlates of subjective burden were evaluated with linear and logistic regression analyses. ResultsThe sample consisted of 356 caregivers at baseline (43% spousal, 57% adult-child caregivers), and 158 caregivers at follow-up (45% spousal, 55% adult-child caregivers). At baseline and follow-up, spousal caregivers experienced a higher overall subjective burden, and reported more often mental health problems, physical health problems, and problems with combining daily activities, compared to adult-child caregivers. For spousal caregivers, a poorer health situation of the care recipient was associated with higher subjective burden, while adult-child caregivers reported higher levels of subjective burden when their time investment in caregiving was high. Subjective burden at follow-up was mainly explained by baseline subjective burden.ConclusionsThese results indicate that for effective caregiver support, it is crucial to take the type of care relationship into account, since the level and correlates of overall subjective burden and burden dimensions varied for spousal and adult-child caregivers. In addition, reducing subjective burden will also positively impact the subjective burden over time.Electronic supplementary materialThe online version of this article (doi:10.1186/s12877-016-0387-y) contains supplementary material, which is available to authorized users.

Survey nonresponse among informal caregivers: effects on the presence and magnitude of associations with caregiver burden and satisfaction.

BackgroundInformal caregiving is becoming more relevant with current trends such as population ageing. However, little is known about nonconsent and nonresponse bias in caregiving research. We investigated nonconsent and nonresponse bias in a sample of informal caregivers who participated in the LifeLines Cohort Study, and were invited for participation in an additional caregiving study.MethodsWe compared socio-demographic characteristics, caregiver health, caregiving situation, and caregiver outcomes of nonconsent and consent caregivers, and nonresponse and response caregivers, on LifeLines data, by using Chi-square tests, Independent Sample T-tests, and Mann-Whitney tests. Furthermore, we examined the influence of nonconsent and nonresponse on the presence and magnitude of the associations between caregiver characteristics and two commonly used caregiving outcomes (caregiver burden and satisfaction). We conducted multinomial logistic regression analyses, including interaction terms with nonconsent and nonresponse.ResultsWithin a subcohort of 8443 caregivers, aged >18 years, 5095 caregivers (60 %) gave consent for participation in the caregiving study. Within the subgroup of 2002 caregivers who received the questionnaire, 965 (48 %) responded. Caregivers who were highly involved in caregiving (i.e. high time investment, high caregiver burden), gave more commonly consent to participate, and responded more often to the questionnaire. Nonconsent and nonresponse influenced the associations between caregiver characteristics and caregiver burden for only a few characteristics, mainly indicating the level of caregiving involvement (e.g. time investment, caregiving duration). Especially for caregiver burden, these indicators were stronger for consent and response caregivers than for nonconsent and nonresponse caregivers.ConclusionsOur findings are important for caregiving research, as they emphasized that participation might not be evenly distributed among caregivers, and that the possibility of nonconsent and nonresponse bias should be considered.Electronic supplementary materialThe online version of this article (doi:10.1186/s12889-016-2948-6) contains supplementary material, which is available to authorized users.

RELACIÓN ENTRE DEPRESIÓN Y SOBRECARGA EN CUIDADORES DE PACIENTES CON DEMENCIA TIPO ALZHEIMER

Alzheimer’s disease (AD) is the most common type of dementia. Due to the progressive decline it generates, patients require permanent care. People who take care of these patients may suffer negative psychological, physical and social consequences. The aim of the study was to determine the correlation between the level of depression and burden in a sample of 84 formal and 92 informal caregivers of patients diagnosed with AD, in the city of Bucaramanga, Colombia. It was carried out a Non-experimental, cross-sectional and correlational study. We used the Depression State/Trait Inventory, and Zarit’s Burden Interview (version for informal caregivers and another one adjusted for using with formal caregivers). We found a statistically significant correlation ( p< .01) between burden and depression (state/trait) in the sample of informal caregivers, but not in the formal caregivers. Further research about the relationship between negative affect and burden, and the influence of contextual variables in that relationship are necessary.

Differential response to depression prevention among a sample of informal caregivers: Moderator analysis of longer-term follow-up trial data

Depression is one of the most common mental disorders in caregivers. Therefore, preventive interventions for this population are needed, especially for caregivers with subclinical symptoms of depression. However, no study to date has identified the characteristics of caregivers that help to predict who will or will not benefit from such a preventive intervention. This study aimed to identify moderators of response to intervention comparing problem solving and usual care in indicated prevention of depression among informal caregivers. A randomized controlled trial was conducted involving 173 participants who were allocated to the problem-solving intervention (n=89) or the usual-care control-group (n=84), with 12-months follow-up. Socio-demographic, care-related and clinical variables at baseline were analyzed as potential moderators of intervention response at 12-months follow-up. Age and emotional distress emerged as significant moderators. Those caregivers younger than 65 years and with higher emotional distress at baseline were more likely to benefit from the intervention than from usual care. Simultaneous consideration of multiple moderators found that intervention was indicated for 95.4% of the sample. Considering these moderators in clinical decision-making could contribute to matching treatments and health service users in a more personalized and effective way.

Het meten en waarderen van mantelzorg met de CarerQol

Measurement and valuation of informal care using the CarerQol Ill or disabled persons often rely, to a large extent, on the care provided by informal caregivers. Economic evaluations adopting a societal perspective should include informal care. If informal care is ignored, these evaluations may recommend a non-optimal alternative if interventions are compared in which informal caregivers play a substantial role. The CarerQol instrument is intended to measure and value carer outcomes. Different (inter)national studies use this instrument, including a large Dutch research project on elderly care (Nationaal Programma Ouderenzorg). This paper presents the results of some psychometric properties of the CarerQol. A study among a heterogeneous sample of informal caregivers shows that the feasibility of the instrument was good and the validity was encouraging. Next research will further investigate the psychometric properties of the CarerQol, in specific the validity among a new heterogeneous population of caregivers and the reliability of the instrument. In addition, future research will focus on the establishment of tariffs for the CarerQol. These tariffs enable the inclusion of the effects of informal care in economic evaluations, and therefore increase the chance accurate conclusions will be drawn from these evaluations. Keywords: informal care, economic evaluations, CarerQol instrument