Informal Caregivers Of Individuals Research Articles

Facilitators and obstacles to the use of a cognitive orthosis for meal preparation within the homes of adults with a moderate to severe traumatic brain injury: Informal caregivers and health-care professionals’ perspectives

ABSTRACT A cognitive orthosis named COOK was developed and implemented to facilitate meal preparation for adults with severe traumatic brain injury (TBI) living in an alternative housing unit. This study aimed to explore facilitators and barriers to the potential use and implementation of COOK in a new context (i.e., within the homes of people living with a TBI in the community). For this purpose, 20 stakeholders (e.g., health-care professionals, clinical coordinators, informal caregivers of individuals with TBI) were interviewed. Participants identified various potential benefits of this technology (e.g., improving independence and confidence of people with TBI) and facilitators (e.g., clinical and technical supports, helpful functionalities) that could facilitate the use and implementation of COOK within a home environment. However, numerous questions remained unanswered regarding the logistics surrounding the implementation of such technology. Thus, further studies and modifications are required to facilitate future implementation of this technology among individuals living in their own homes.

Development of a Novel Measure of Informal Caregiver Burnout

Burnout is a concept which has permutated most settings over recent decades. However, due to its roots in occupational research there exists both theoretical and practical gaps to consider when measuring burnout within non-occupational settings, such as informal caregiving. This study developed and validated a measure of burnout for informal caregivers of individuals with Alzheimer’s disease and dementia, the Informal Caregiver Burnout Inventory (ICBI). Theoretical and methodological implications are discussed. Development included a 10-step method for scale development proposed by Boateng and colleagues (2018). Expert feedback on item appropriateness and clarity was collected from 33 caregivers or related professional experts and used to modify the original item-bank. Following this, a national sample of 255 current caregivers was gathered. This survey included the ICBI, two gold-standard measures of burnout, and measures of depression and caregiver burden. Item reduction analysis was used to remove items with poor item-total and inter-domain correlations. The ICBI shows good item-agreement (Cronbach’s alpha= .88) and principles of Item Response Theory were used to measure item- and scale-wide information captured. Convergent validity was then compared against other measures of burnout using Bland-Altman Plots. Divergent validity was similarly assessed by comparing the ICBI to a depression questionnaire. Finally, the predictive validity of each burnout measure was compared to their association with burden and depression. This study suggests that the ICBI may perform adequately as an index of caregiver burnout, and thus is address a methodological and clinical gap in current efforts to understand the dynamics of caregiving.

Self-Care for Caregivers of Individuals Living With Multiple Sclerosis: Testing Mediation Models of Caregiver Stress, Health, and Self-Care

Individuals with Multiple Sclerosis (MS) often receive home health care, yet little research investigates the health of informal caregivers of individuals with MS. We tested a mediation model in which associations between caregiver stress and caregiver self-care were explained by each of four a priori caregiver health factors—caregiver negative affect, pain, tiredness, and functional limitations. Participants ( n = 60 informal caregivers) were recruited online or in-person from March—July 2018, and completed an online survey assessing demographics and their caregiving experience. After controlling for demographics, only caregiver tiredness mediated the association between caregiver stress and caregiver self-care. Therefore, caregiver tiredness may be an important construct for assessment, intervention, and future research, among caregivers of individuals with MS, and among anyone providing home health care. These findings have research, clinical, and policy implications.

An Integrative Review of Measuring Caregiver Burden in Substance Use Disorder.

Family caregivers contribute to engagement in treatment and adherence, reduced substance misuse and relapse, and increased well-being of recipients with substance use disorder. However, providing care has also been associated with negative emotional and physical health outcomes for caregivers. The purpose of this integrative review was to determine what instruments are used to measure caregiver burden in informal caregivers of individuals with substance use disorder. An integrative review framework was applied to examine empirical and theoretical literature to answer the guiding research question, "How is caregiver burden measured in caregivers of individuals with substance use disorder?" PubMed, CINAHL, and APA PsychINFO were searched using a combination of search terms. The initial 1,198 articles were narrowed to 32 that fit the search criteria and purpose of the review. A variety of scales have been used to measure caregiver burden. Caregiver burden is operationalized as objective or subjective burden. Objective burden refers to changes in the home, finances, employment, social life, and leisure, whereas subjective burden refers to the emotional reaction of the caregiver in coping with providing care. Caregiver burden was most often reported as moderate to severe in populations with substance use disorder. Attributes measured included anxiety, depression, stress, worry, displeasure, care recipient behavioral problems and substance abuse, stigma, relationship strain, financial expenses, social support, family disruption, and the effect on caregiver physical and emotional health. Specific instruments that can accurately evaluate objective and subjective caregiver burden are needed to measure the quality of caregiver health. More research is necessary to better understand the physical and emotional health of caregivers of persons with substance use disorder and the factors that contribute to increased quality of life. Understanding the relationship between outcomes and protective factors could help nurses to develop prevention strategies and treatment interventions aimed at decreasing the psychosocial trauma and stress associated with caregiver burden.

Relational Satisfaction of Spousal/Partner Informal Caregivers of People with Multiple Sclerosis: Relational Commitment, Caregiving Burden, and Prorelational Behavioral Tendencies.

Relational satisfaction of spousal/partner informal caregivers of people with multiple sclerosis (MS) is important for continued care and support. Previous studies have examined relational satisfaction in terms of well-being and quality of life of informal caregivers. Based on the Rusbult investment model, we directly studied the relational satisfaction of spousal/partner informal caregivers of individuals with MS. In doing so, we investigated possible effects that commitment to relationship, caregiving burden, and prorelational behavioral tendencies might have on relational satisfaction. Nine hundred nine adult spousal/partner informal caregivers of people with MS completed measures of relational satisfaction (Kansas Marital Satisfaction Scale), commitment to relationship (15-item commitment measure), caregiving burden (Zarit Burden Interview), and prorelational behavioral tendencies (adapted Prosocial Tendencies Measure). Participants also provided demographic information (age, sex, duration and type of relationship [spouse, partner]). Structural equation modeling highlighted commitment to the relationship as the strongest predictor of relational satisfaction. Caregiving burden was found to affect relational satisfaction directly and through commitment to relationship. Prorelational behavioral tendencies were found to affect less relational satisfaction. Commitment to relationship, namely, intent to persist, had the highest positive effect on satisfaction. Caregiving burden was found to have a two-way negative relationship to commitment to relationship. These findings suggest that specialists should enhance the intent-to-persist aspect of commitment because it seems to have an alleviating effect regarding caregiving burden (which itself negatively affects relational satisfaction).

Family cohesion, burden, and health-related quality of life among Parkinson's disease caregivers in Mexico.

Informal caregivers of individuals with Parkinson's disease face a range of responsibilities that increase as the disease progresses. As a result of these stressors, caregivers are vulnerable to decreased health-related quality of life (HRQOL). Guided by the stress process model of caregiving, the present study examined the relations between family cohesion, perceived burden, and mental and physical HRQOL among Parkinson's disease caregivers in Mexico. It was hypothesized that perceived burden would mediate the relations of family cohesion and mental and physical HRQOL. Ninety-five family caregivers of individuals with Parkinson's disease in Mexico City, Mexico, participated in the study. Multiple regression was utilized to conduct mediation analyses. Results indicated that burden fully mediated the relation between family cohesion and mental HRQOL, and family cohesion was not associated with physical HRQOL. Findings extend the stress process model cross-culturally and lend support for the importance of family cohesion and perceived burden in determining caregiver mental HRQOL. Clinical health promotion interventions should target perceived burden and family cohesion together to improve mental HRQOL among familial caregivers in Mexico.

Self-efficacy and Stress Among Informal Caregivers of Individuals at End of Life.

Researchers have established associations between the stressors of providing informal care and caregiver health risks. Despite the negative consequences, researchers have identified the existence of protective factors that have the potential to buffer or prevent stress. The purpose of this study was to determine the relationship between self-efficacy and stress in adult informal caregivers providing end-of-life care. This cross-sectional, associational study analyzed data from questionnaires completed by adult informal caregivers providing end-of-life care for an adult in North Texas. Questionnaires provided measures of self-efficacy, stress, and caregiver perceived health. Findings indicated caregiver self-efficacy globally had a significant correlation with stress, whereas caregivers' confidence in caring for themselves had a significant negative relationship with perceived stress. Specifically, study findings indicate caregivers with greater confidence in managing demands of caregiving have lower levels of stress, and caregivers with greater confidence in caring for themselves, specifically, have lower levels of perceived stress. Study findings highlight the importance of caregivers' self-care needs. Health care practitioners should recognize and intervene to support caregivers' self-care needs in order to prevent additional, needless health problems in this population.

High Priority Problems Experienced by Informal Caregivers of Individuals With Heart Failure

The purpose of this study was to identify high priority problems experienced by informal caregivers when providing care for individuals with heart failure in the home. This secondary analysis was part of a cross-sectional, descriptive study using online self-report instruments (N = 530), including one researcher-developed item identifying top priority problems for heart failure caregivers. Content and quantitative data analyses were conducted. Performing multifaceted activities and roles that evolve around daily heart failure demands (n = 463) and maintaining caregiver physical, emotional, social, and financial well-being (n = 138) were the two most common themes experienced by caregivers of individuals with heart failure. Each of these two problems had several dimensions. Another theme was providing unending care (n = 40), with two dimensions.

Experiences, attitudes, and perceptions of caregivers of individuals with treatment-resistant schizophrenia: a qualitative study

BackgroundTreatment-resistant schizophrenia (TRS) affects about one-third of individuals with schizophrenia. People with TRS do not experience sustained symptom relief and at the same time have the most severe disease-related disability and associated costs among individuals with severe mental disorders. Like caregivers of people with treatment-responsive schizophrenia, caregivers of individuals with TRS experience the disease burden along with their care recipients; however, for those providing care for individuals with TRS, the stress of the burden is unrelenting due to uncontrolled symptoms and a lack of effective treatment options. The objective of this study is to better understand the burden of TRS from the caregiver perspective and to explore their perception of available treatments.MethodsEight focus groups with non-professional, informal caregivers of individuals with TRS were conducted in 5 US locations. TRS was defined as failure of ≥2 antipsychotics and persistent moderate-to-severe positive symptoms of schizophrenia, per caregiver report.ResultsThe 27 caregivers reported an average of 37 h/week providing direct care, and 21 reported being on call “24/7.” Caregivers commonly reported that their care recipients exhibited symptoms of auditory hallucinations (89%), agitation/irritability/hostility (81%), suspiciousness (78%), tangentiality (74%), and cognitive impairment (74%); 70% of caregivers ranked suspiciousness/persecution as the most challenging symptom category. Caring for an individual with TRS impacted many caregivers’ finances, career prospects, social relationships, and sense of freedom. Additionally, multiple medication failures led to a sense of hopelessness for many caregivers.ConclusionsPersistent positive symptoms caused significant perceived burden, feelings of being overwhelmed and having no relief, and substantial negative impacts on caregivers’ emotional and physical health. To address these substantial unmet needs, policy makers should be aware of the need for practical, social, and emotional support for these caregivers and their families. Additionally, new treatment options for TRS should be developed.

Problems experienced by informal caregivers of individuals with heart failure: An integrative review

ObjectivesThe purpose of this review was to examine and synthesize recent literature regarding problems experienced by informal caregivers when providing care for individuals with heart failure in the home. DesignIntegrative literature review. Data sourcesA review of current empirical literature was conducted utilizing PubMed, CINAHL, Embase, Sociological Abstracts, Social Sciences Full Text, PsycARTICLES, PsycINFO, Health Source: Nursing/Academic Edition, and Cochrane computerized databases. 19 qualitative, 16 quantitative, and 2 mixed methods studies met the inclusion criteria for review. Review methodsComputerized databases were searched for a combination of subject terms (i.e., MeSH) and keywords related to informal caregivers, problems, and heart failure. The title and abstract of identified articles and reference lists were reviewed. Studies were included if they were published in English between January 2000 and December 2016 and examined problems experienced by informal caregivers in providing care for individuals with heart failure in the home. Studies were excluded if not written in English or if elements of caregiving in heart failure were not present in the title, abstract, or text. Unpublished and duplicate empirical literature as well as articles related to specific end-stage heart failure populations also were excluded. Methodology described by Cooper and others for integrative reviews of quantitative and qualitative research was used. Quality appraisal of the included studies was evaluated using the Joanna Briggs Institute critical appraisal tools for cross-sectional quantitative and qualitative studies. ResultsInformal caregivers experienced four key problems when providing care for individuals with heart failure in the home, including performing multifaceted activities and roles that evolve around daily heart failure demands; maintaining caregiver physical, emotional, social, spiritual, and financial well-being; having insufficient caregiver support; and performing caregiving with uncertainty and inadequate knowledge. ConclusionsInformal caregivers of individuals with heart failure experience complex problems in the home when providing care which impact all aspects of their lives. Incorporating advice from informal caregivers of individuals with heart failure will assist in the development of interventions to reduce negative caregiver outcomes. Given the complex roles in caring for individuals with heart failure, multicomponent interventions are potentially promising in assisting informal caregivers in performing these roles.

Psychological Distress Among Caregivers of Individuals With a Diagnosis of Schizophrenia or Schizoaffective Disorder.

The aim was to quantify caregiver distress among informal caregivers of individuals with schizophrenia or schizoaffective disorder and identify its correlates. From December 2014 through April 2015, ads posted with mental health advocates and the media recruited informal caregivers, age ≥21 years, to complete an online questionnaire. It included the ten-item Perceived Stress Scale (PSS) (0, no distress; 39, highest) and hypothesized distress correlates in four groups: caregiver and care recipient characteristics; caregiver role demands; caregiver social supports; and caregiver cognitive appraisals of caregiving. Three hypotheses were tested: first, distress is significantly related to variables from each group; second, social supports moderate the effects of role demands on distress; and third, cognitive appraisals mediate the effects of role demands on distress. Hypotheses were tested with multiple linear regression equations and structural equation models (SEMs). Of 2,338 Web site "hits," 1,708 individuals consented, 1,398 were eligible, and 1,142 had complete data. Most caregivers were women (83%), white (89%), and college educated (59%), with a mean±SD age of 55.6±13.0. Compared with U.S. norms on the PSS (13.4±6.5), mean caregiver distress was high (18.9±7.1). According to SEMs, variables from each group were associated with distress. Contributing most to greater distress were caregiver health problems, providing frequent caregiving assistance, monitoring medication, having limited social support, and appraising caregiving negatively. Cognitive appraisals mediated the effects of demands on distress. Social support had a significant direct effect only. Caregiver distress was relatively high and related to multiple variables, some of which are potentially modifiable.

Development and feasibility of Inlife: A pilot study of an online social support intervention for informal caregivers of people with dementia.

BackgroundInformal caregivers of individuals with dementia have an increased risk to face social isolation due to progression of the disease. Online social media interventions might offer a new opportunity to increase access to social support and enhance positive interactions and openness in dementia care networks.ObjectiveThis explorative pilot study describes (1) the development of an online social support intervention Inlife, and (2) the evaluation of the feasibility of this intervention and the measurements to assess its effectiveness.MethodsThe Medical Research Council (MRC) framework guided the development of the online social support intervention. This is a stepwise approach that integrates potential users’ views with the development and validation of the program content. The program was developed by combining (1) individual caregiver interviews (n = 10), (2) focus group sessions with experts and web designers (n = 6), and (3) individual think-aloud tests (n = 2). Subsequently, a pilot study with informal caregivers was conducted (n = 25) to examine the program’s feasibility and preliminary effectiveness. Online self-report measures were completed at baseline and at four follow-up time points.ResultsIn total, 23 participants completed the newly developed Inlife intervention. Despite the high number of low-active users (17/23, 73%), Inlife had a good feasibility score of 7.1 (range: 1–10). The Calendar and Timeline were used most frequently and contributed to better care coordination and positive interactions.ConclusionsAlthough the Inlife platform received a sufficient feasibility rating, the uptake was not optimal. Therefore, the Inlife platform was adapted to limit the number of low-active users and improve user friendliness. Recommendations for additional treatment adherence were provided. The development according to the MRC framework and the sufficient feasibility rating of Inlife formed the basis for a future effectiveness study.

A Proposal of an innovative program for informal caregivers of patients with mood disorders

IntroductionIntervention with informal caregivers (IC) of psychiatric patients is internationally recognized as relevant and a priority. However, the existing responses in this area are still insufficient, especially regarding caregivers of individuals with mood disorders (MD). Mindfulness and compassion focused therapy have proven to be an effective approach in stress reduction and in improving emotional and social well-being of caregivers of patients with other conditions. However, no studies testing these new approaches in IC of patients with MD have been carried out. The objective of this work is to present a research project that aims to develop, implement and empirically test the effectiveness of an innovative group program to help informal caregivers of individuals with mood disorders to cope with the negative impact of the disease and reduce caregiver burdens.MethodsThe design of this experimental study to test the program's efficacy is a non-randomised controlled trial (nrct) with 12 months follow-up, with a mixed assessment methodology (quantitative and qualitative analysis). A sample of 60 informal caregivers of individuals with chronic MD will be constituted (n = 30 Control group; n= 30 Experimental group).ResultsWe expect the program to promote significant changes in participants in terms of several emotional variables (eg: burden, stress, resilience, compassion and quality of life).ConclusionsFurther efforts to continue studying the impact of interventions in caregivers should be carried out, as a way to improve the quality of life of caregivers and their ability to provide informal care to MD patients.Disclosure of interestThe authors have not supplied their declaration of competing interest.

Impact of caregiver activities and social supports on multidimensional caregiver burden: analyses from nationally-representative surveys of cancer patients and their caregivers.

Informal caregivers of individuals with cancer may experience substantial burdens. To develop interventions to support these caregivers, it is crucial to quantify and understand the domains of burdens potentially experienced by caregivers and factors contributing to each domain. Using data from two national surveys, the National Survey of Caregiving (NSOC) linked to the National Health and Aging Trends Survey (NHATS), we identified all participants in the NHATS diagnosed with cancer who had a caregiver participating in the NSOC. Guided by a theoretical model, twenty-two items in the NSOC related to caregiver health, mood and outlook were included in factor analysis to develop scales capturing domains of burden. Multivariable regression analyses examined whether activities performed by caregivers and supports for caregivers were associated with these burden scales. Analysis of responses from 373 caregivers of cancer patients identified three scales: emotional burden; psychological burden; and relationship with the patient. Providing assistance managing medical care was associated with increased emotional and psychological burden, while assistance with non-medical issues increased psychological burden and worsened relationships with patients. Caregiver provision of direct patient care activities was also associated with increased burden but improved relationships with patients. Use of caregiver supports showed mixed associations with burden. Using a nationally-representative sample of cancer patients and their caregivers and brief publicly-available survey questions, we present three scales addressing different aspects of caregiver burden that are responsive to caregiver activities and social supports. This may assist in developing and evaluating intervention to decrease caregiver burden.

Emotional vitality in caregivers: application of Rasch Measurement Theory with secondary data to development and test a new measure

Objective: To describe the practical steps in identifying items and evaluating scoring strategies for a new measure of emotional vitality in informal caregivers of individuals who have experienced a significant health event. Design: The psychometric properties of responses to selected items from validated health-related quality of life and other psychosocial questionnaires administered four times over a one-year period were evaluated using Rasch Measurement Theory. Setting: Community. Subjects: A total of 409 individuals providing informal care at home to older adults who had experienced a recent stroke. Main measures: Rasch Measurement Theory was used to test the ordering of response option thresholds, fit, spread of the item locations, residual correlations, person separation index, and stability across time. Results: Based on a theoretical framework developed in earlier work, we identified 22 candidate items from a pool of relevant psychosocial measures available. Of these, additional evaluation resulted in 19 items that could be used to assess the five core domains. The overall model fit was reasonable (χ2 = 202.26, DF = 117, p = 0.06), stable across time, with borderline evidence of multidimensionality (10%). Items and people covered a continuum ranging from −3.7 to +2.7 logits, reflecting coverage of the measurement continuum, with a person separation index of 0.85. Mean fit of caregivers was lower than expected (–1.31 ±1.10 logits). Conclusion: Established methods from the Rasch Measurement Theory were applied to develop a prototype measure of emotional vitality that is acceptable, reliable, and can be used to obtain an interval level score for use in future research and clinical settings.

Needs assessments of memory disorder patients.

Previous research shows that informal caregivers of individuals with a memory disorder experience financial strain, declining physical health, and psychological distress. Various resources and services have been developed to address and/or prevent these potential outcomes, yet caregivers continue to be negatively affected by the demands of caregiving. We hypothesize that better identification and clarification of concrete patient and caregiver needs will aid in the modification and improvement of the available resources. The purpose of this study is to determine the psychosocial needs of the cognitively impaired population and their caregivers. A one-page Needs Assessment was created to address areas of potential concern for the individual with a memory disorder and the caregiver. This assessment was administered during visits to an outpatient clinic in Philadelphia. A total of 204 Needs Assessments were collected. The significant needs found in our study cohort include sleep, exercise, clinical trials, education, and assistance with ADLs and IADLs. This study satisfied the initial identification of caregiver and patient needs; now each must be explored further to determine how to successfully meet such needs. If the primary needs of the patient can be met by a focused service, the caregiver will no longer be the sole provider of meeting the specific need. This will decrease the involved role of the caregiver, maximize patient homecare, minimize caregiver stress, and increase the quality of life for both the patient and caregiver.

An Exploratory Study of Decision Making by Informal Caregivers of Individuals With Multiple Sclerosis

The types of assistance informal caregivers provide has been well documented. However, the day-to-day decisions and the resources caregivers use to make decisions have not been investigated. This study explored the decisions made by informal caregivers of multiple sclerosis care recipients and the resources they use to inform those decisions. A qualitative, exploratory-descriptive research design was used. Two separate in-depth face-to-face, audiotaped interviews were completed with each caregiver. Interviews were transcribed verbatim, and data were analyzed using thematic content analysis. Results revealed that multiple sclerosis caregivers make decisions in four topic areas: healthcare, financial, social, and family. Decisions increased in complexity and severity as the care recipient's disease progressed. Triaging acute illnesses, managing medication side effects, and end-of-life decisions were the most difficult for caregivers. Caregivers used a variety of resources to support their decision making and identified areas where resources were lacking. By more fully understanding the types of decisions informal caregivers make and the resources they use to aid these decisions, healthcare professionals can develop interventions that support these devoted individuals, increasing the quality of life for both the caregiver and the care recipient.

Work productivity and health of informal caregivers of persons with advanced cancer

The purpose of this study was to describe health promotion behaviors and work productivity loss in informal caregivers of individuals with advanced stage cancer. Using a cross-sectional, correlational design, 70 caregivers completed measures of health behaviors, mood, social support, and burden. Absenteeism and presenteeism were evaluated in employed caregivers (n = 40). Caregivers reported low levels of physical activity. The mean percentage of work productivity loss due to caregiving was 22.9%. Greater work productivity loss was associated with greater number of caregiving hours, higher cancer stage, married status, and greater anxiety, depression, and burden related to financial problems, disrupted schedule, and health. Nurses should assess caregivers and provide health promotion interventions, which may ultimately reduce the economic impact of caregiving.

Pilot Study of a Brief Behavioral Sleep Intervention for Caregivers of Individuals with Dementia

Informal caregivers of individuals with dementia experience higher rates of poor sleep quality and depression than the general population. Short-term behavioral interventions have been shown to improve sleep quality in other caregiver populations. The purposes of this study were to determine the feasibility of the CAregiver Sleep Intervention (CASI) in a small sample of caregivers of both community-dwelling and institutionalized individuals with dementia. The caregivers were given CASI, a 5-week behavioral sleep intervention combining relaxation, stimulus control, and sleep hygiene with personal goal setting, delivered at the caregiver's convenience. Caregivers reported no increased burden with CASI. The intervention was well received, and sleep quality and depression trended toward improvement. CASI appears to be feasible and beneficial in this small sample and warrants further study in caregivers of individuals with dementia.

Depressed mood in informal caregivers of individuals with mild cognitive impairment.

This study estimates the prevalence of depressed mood in caregivers of individuals with mild cognitive impairment (MCI) and assesses whether demographics, stressors, intrapsychic strain, and gain are associated with depressed mood. A secondary analysis of baseline data from the Alzheimer's Disease Cooperative Study MCI trial was conducted using a cross-sectional, correlational design. Descriptive statistics to estimate the prevalence of caregiver depressed mood and univariate and block-wise logistic regression analyses were used. The prevalence of depressed mood in 769 caregivers was 24.6% (95% confidence interval, 21.5-27.7). The odds of being depressed were significantly higher in younger, nonspousal caregivers with less education, who cared for MCI patients with lower activities of daily living functioning, and who perceived greater relational deprivation, higher levels of self-loss, and personal gain. Controlling for relevant variables, relational deprivation and caregiver education continued to be significantly associated with depressed mood. Relational deprivation may be important for future interventions.