Caregiver Esteem Research Articles

Perceived burden and need for support among caregivers of cancer patients

Background The aims of this study were to examine (1) the perceived burden among caregivers and identify those in risk of high burden and (2) the need for support among caregivers and identify associated factors. Materials and methods Cancer patients who participated in an educational program at the Montebello Center (MBC) in Norway between May 2021 and February 2022 were asked to invite a caregiver to answer a questionnaire. The caregiving burden was assessed with the Caregivers Reaction Assessment (CRA) that consists of 24 questions scored from 1 (strongly disagree) to 5 (strongly agree), covering five domains. A mean sum score was calculated for each domain. Higher subscale scores indicate higher levels of burden, except for caregiver esteem where a high score indicates a low burden. Need for support was assessed with 13 questions. Results Of 464 invitations, 185 caregivers responded (response 40%), median age was 58.0 years and 58% were male. Caregiver burden mean scores were: 2.6 (SD 1.03) for Impact on schedule, 2.1 (SD 0.79) for Lack of family support, 2.1 (SD 0.76) for Impact on health, 2.0 (SD 0.86) for Impact on finances, and 4.2 (SD 0.47) for Caregiver esteem. Female caregivers, younger, higher education, having comorbidities, caring for patients having recurrence of cancer, and shorter time since diagnosis were associated with higher burden measured on individual subscales of the CRA. Most reported needs were information about: cancer, late effects and rehabilitation services and support from peers and professionals to cope with the new situation. Younger, caregiver comorbidity and recurrence of cancer of the patient were associated with more needs. Conclusions The results indicate that caregivers of cancer patients participating at the MBC report moderate caregiver burden, however, numerous caregivers reported need for support within several areas. Our findings need to be confirmed in a larger unselected group.

Negative and positive experiences of caregiving among family caregivers of older blunt trauma patients.

ObjectivesFamily caregivers play a fundamental role in the care of the older blunt trauma patient. We aim to identify risk factors for negative and positive experiences of caregiving among family caregivers.DesignProspective, nationwide, multi-center cohort study.Setting and participants110 family caregivers of Singaporeans aged≥55 admitted for unintentional blunt trauma with an Injury Severity Score (ISS) or New Injury Severity Score (NISS)≥10 were assessed for caregiving-related negative (disturbed schedule and poor health, lack of family support, lack of finances) and positive (esteem) experiences using the modified-Caregiver Reaction Assessment (m-CRA) three months post-injury.MethodsThe association between caregiver and patient factors, and the four m-CRA domains were evaluated via linear regression.ResultsCaregivers of retired patients and caregivers of functionally dependent patients (post-injury Barthel score <80) reported a worse experience in terms of disturbed schedule and poor health (β-coefficient 0.42 [95% Confidence Interval 0.10, 0.75], p = .01; 0.77 [0.33, 1.21], p = .001), while male caregivers and caregivers who had more people in the household reported a better experience (-0.39 [-0.73, -0.06], p = .02; -0.16 [-0.25, -0.07], p = .001). Caregivers of male patients, retired patients, and patients living in lower socioeconomic housing were more likely to experience lack of family support (0.28, [0.03, -0.53], p = .03; 0.26, [0.01, 0.52], p = .05; 0.34, [0.05, -0.66], p = .02). In the context of lack of finances, caregivers of male patients and caregivers of functionally dependent patients reported higher financial strain (0.74 [0.31, 1.17], p = .001; 0.84 [0.26, 1.43], p = .01). Finally, caregivers of male patients reported higher caregiver esteem (0.36 [0.15, 0.57], p = .001).Conclusions and implicationsNegative and positive experiences of caregiving among caregivers of older blunt trauma patients are associated with pre-injury disability and certain patient and caregiver demographics. These factors should be considered when planning the post-discharge support of older blunt trauma patients.

Cancer patients' diagnosis and symptoms and their family caregivers' self-efficacy and social support are associated with different caregiver reactions.

To describe caregiver and patient characteristics that are associated with negative and positive reactions in family caregivers (FCs) of cancer outpatients. A total of 194 FCs completed the Caregiver Reaction Assessment (CRA) scale 6months after start of new treatment in patients with breast, ovarian, colorectal, or head and neck cancer. Linear regression models were used to examine which caregiver characteristics (i.e. demographic, self-efficacy and social support) and patient characteristics (i.e. clinical, symptoms) were associated with each of the CRA subscales (caregiver esteem, lack of family support, and impact on health, schedule and finances). Less social support was significantly associated with poorer scores on all subscales (B -0.01/0.01). Also, poorer scores on one or more of the CRA subscales were reported by FCs who had lower self-efficacy (B -0.02), a higher level of education (primary B 0.42, secondary B 0.22), more medical conditions (B 0.06), and were female (B 0.20), and by FCs of patients with colorectal (B 0.45) or head and neck cancer (B 0.27), and those who reported a higher symptom burden (B 0.28/0.49). Both caregiver and patient factors were associated with reactions in FCs of cancer outpatients. This information can be used by healthcare personnel to identify FCs who need additional support (e.g. counselling), and to increase focus on strengths and assets within the caregivers (e.g. support groups).

Mental health and reactions to caregiving among next of kin of older people (65+) with multi-morbidity discharged home after hospitalization.

Older people with multi-morbidity are major users of healthcare and are often discharged from hospital with ongoing care needs. This care is frequently provided by informal caregivers and the time immediately after discharge is challenging for caregivers with new and/or additional tasks, resulting in anxiety and stress. This study aimed to describe mental health, with particular reference to anxiety and depression and reactions to caregiving, and to investigate any associations between the two, in next of kin of older people with multi-morbidity after hospitalisation. It also aimed to explore the association between the demographic characteristics of the study group and mental health and reactions to caregiving. This was a cross-sectional questionnaire study using the Hospital Anxiety and Depression Scale and the Caregiver Reaction Assessment. The study group consisted of 345 next of kin of older people (65+) with multi-morbidity discharged home from 13 medical wards in Sweden. Data were analysed using descriptive and analytical statistics. To identify whether reactions to caregiving and next of kin characteristics were associated with anxiety and depression, a univariate logistic regression analysis was performed. More than one quarter of respondents showed severe anxiety and nearly one in 10 had severe depressive symptoms. The frequencies of anxiety and depression increased significantly with increased negative reactions to caregiving and decreased significantly with positive reactions to caregiving. Regarding caregiving reactions, the scores were highest for the positive domain Caregiver esteem, followed by the negative domain Impact on health. Women scored significantly higher than men on Impact on health and spouses scored highest for Impact on schedule and Caregiver esteem. Nurses and other healthcare professionals may need to provide additional support to informal caregivers before and after discharging older people with significant care needs from hospital. This might include person-centred information, education and training.

Anxiety and Depression Associated With Burden in Caregivers of Patients With Brain Metastases.

To describe and examine the relationship between caregiver burden and the affective disorders anxiety and depression in caregivers of patients with brain metastases. . Cross-sectional, descriptive, correlational. . Moores Cancer Center at the University of California, San Diego. . 56 family caregivers of patients with brain metastases from solid tumors at other primary sites. . Self-administered survey. . Caregiver burden, anxiety, and depression. . With the exception of caregiver esteem, no statistically significant relationships were noted between impact on schedule, a dimension of caregiver burden, and screening positive for affective disorders. . Findings from this study support previous reports indicating that the odds of having anxiety and depressive symptoms are greater in family caregivers who report higher levels of caregiver burden. . The identification and management of caregiver burden are important considerations for a comprehensive cancer care program. Addressing the needs of the cancer caregiver, who is at heightened risk for various psychological, physical, financial, and social problems, is increasingly vital.

Repetitive Negative Thinking: The Link Between Caregiver Burden and Depressive Symptoms.

To explore whether repetitive negative thinking (RNT) mediates the pathway between subscales of caregiver burden and depressive symptoms. . Cross-sectional pilot study. . Bone marrow unit at the University of Louisville Hospital in Kentucky and caregiver support organizations in Louisville. . 49 current cancer caregivers who were primarily spouses or partners of individuals with lymphoma or leukemia and provided care for a median of 30 hours each week for 12 months. . Caregivers completed questionnaires assessing caregiver burden, RNT, and depressive symptoms. . Caregiver burden, RNT, and depressive symptoms. . Results showed that RNT mediated the relationship between burden (as a result of impact on schedule or finances) and depressive symptoms. Although burden from a lack of family support and impact on health was positively related to depressive symptoms, these relationships were not mediated by RNT. In addition, caregiver esteem was not associated with RNT or depressive symptoms. . RNT plays an important role in maintaining and potentially exacerbating caregiver distress. Assessment and intervention regarding RNT in cancer caregivers may reduce depressive symptoms prompted by burden from an impact on schedule or finances. . Nurses may be significant in connecting caregivers experiencing RNT to resources and professionals to enhance adaptive coping and potentially prevent depressive symptoms.

Validity and Reliability of the Positive Aspects of Caregiving (PAC) Scale and Development of Its Shorter Version (S-PAC) Among Family Caregivers of Older Adults.

To (a) assess the validity and reliability of the 9-item Positive Aspects of Caregiving (PAC) scale among a national sample of caregivers for older adults with functional limitations, (b) develop a shorter version (short-PAC [S-PAC] scale) and assess its psychometric properties, and (c) investigate both scales' measurement equivalence/invariance (ME/I) across language of administration (Chinese/English/Malay). Scale/item measurement property assessment, confirmatory factor analysis (CFA), testing the "original" 2-factor model (6 items: first factor; 3 items: second factor), and exploratory FA (EFA) of the 9-item PAC scale was done. Consequently, alternate CFA models were tested. The S-PAC was developed and subjected to CFA. For both scales, convergent (correlation with caregiver esteem) and divergent (correlation with caregiver depressive symptoms) validity, and language ME/I was assessed. For the 9-item PAC scale, the "original" 2-factor CFA model had a poor fit; its EFA and scale/item measurement properties supported a single factor. Among alternate CFA models, a bi-factor model (all nine items: first factor [overall PAC]; six items: second factor [self-affirmation]; three items: third factor [outlook-on-life]) had the best fit. The bi-factor CFA model also had a good fit for the S-PAC scale, developed after eliminating 2 items from the 9-item PAC scale. Both scales demonstrated convergent and divergent validity, and partial ME/I across language of administration. Both the 9-item PAC and 7-item S-PAC scales can be used to assess positive feelings resulting from care provision among family caregivers of older adults with functional limitations.

The relationship between family functioning and caregiving appraisal of dementia family caregivers: caregiving self-efficacy as a mediator

ABSTRACTObjectives: The aim of this study was to explore caregiving self-efficacy as a mediator for the association between family functioning and caregiving appraisal of dementia family caregivers in Taiwan.Method: This study adopted a cross-sectional correlational design. Purposive sampling was used to recruit 115 dyads of dementia patients and family caregivers from the outpatient neurological clinics of two hospitals in northern Taiwan. Data were gathered through interviews with a structured questionnaire, which included demographic characteristics for caregivers and patients, family functioning, caregiving self-efficacy, as well as positive and negative aspects of caregiving appraisal.Results: Family functioning, patients' activities of daily living score, Neuropsychiatric Inventory caregiver distress, and three domains of self-efficacy were significantly associated with caregiver burden. Hierarchical multiple regression analyses indicated that self-efficacy for obtaining respite (SE-OR) significantly explained 20.5% of the variance in caregiver esteem. Caregiver perceived worsened health status, family functioning, and SE-OR significantly explained 59% of the variance in caregiver burden. The mediation test only supported the partially mediating role of SE-OR on the relationship between family functioning and caregiver burden, while the mediating effect of self-efficacy for responding to disruptive behaviours and controlling upsetting thoughts were insignificant.Conclusion: Our findings provided preliminary evidence for health professionals recommending that future studies should assess the family dynamic and health problems of caregivers, and develop appropriate family-centred interventions that focus on strengthening interfamily support and respite services to alleviate caregiver burden.

Providing care to relatives with mental illness: reactions and distress among primary informal caregivers.

BackgroundThe responsibility of caring for relatives with mental illness often falls on the family members. It has been reported that the reactions to or consequences of providing care are what rendered the role of a caregiver challenging and hence a source of distress. This present study thus aimed to identify socio-demographic correlates of caregiving experiences using the Caregiver Reaction Assessment (CRA) and to examine the associations between reactions to caregiving and psychological distress.MethodsA total of 350 caregivers with relatives seeking outpatient care at a tertiary psychiatric hospital were recruited for this study. Distress among caregivers was assessed using the Patient Health Questionnaire (PHQ-9). The CRA was administered to measure reactions from caregiving in four domains including impact on schedule and health (ISH), impact on finance (IF), lack of family support (LFS) and caregiver esteem (CE). Participants also completed a questionnaire that asked for their socio-demographic information. Multivariable linear regression analysis was first used with domains of CRA as outcome variables and socio-demographic variables as predictors in the models. The next set of multivariable linear regression analysis tested for the association between CRA domains and distress with CRA domain scores as outcome variables and PHQ-9 score as predictor, controlling for socio-demographic variables.ResultsSocio-demographic correlates of CRA domains identified were age, education, employment, income and ethnicity. Domain scores of CRA were significantly associated with PHQ-9 score even after controlling for socio-demographic variables. A higher distress score was associated with greater impact felt in the domain of ISH (β = 0.080, P < 0.001), IF (β = 0.064, P < 0.001), and LFS (β = 0.057, P < 0.001), and was associated with lower CE domain scores (β = −0.021, P < 0.05).ConclusionThis study identified several socio-demographic correlates of caregiving reaction in the different domains. Each of these domains was found to be significantly associated with caregiver distress. Higher distress was associated with stronger impact on the negative domains and a lower impact in the positive domain of caregiving reaction. Interventions such as educational programs at the caregiver level, and also promoting wider social care support in these domains may help to address caregiver distress.

Candidacy for conversation partner training in aphasia: findings from a Dutch implementation study

Background: Aphasia rehabilitation should comprise a family-centred approach, involving main conversation partners in the rehabilitation process as soon as possible. A standardised approach to conversation partner training (CPT) became available in the Netherlands with the release of Partners of Aphasic clients Conversation Training (PACT). PACT was introduced in clinical practice in a multi-centre implementation study with 34 participating dyads.Aims: To explore candidacy for CPT by describing the characteristics of dyads where the conversation partner engaged in CPT and to identify which characteristics had the potential to predict benefit of PACT.Methods and Procedures: A pre-post treatment design was used in a multi-centre study. Pre- and post-CPT measures of psychosocial characteristics (caregiver burden, depression and coping) from the partner and behavioural characteristics (cognitive, linguistic and communicative) from the person with aphasia (PWA) were collected. Partner experience was assessed using four scales from the Intrinsic Motivation Inventory. Pre-post measures were analysed using paired T-tests and Wilcoxon signed ranks tests. Multiple regression analyses were used to assess potential predictors of training outcomes.Outcomes and Results: Partners of people with moderate to severe aphasia engaged in PACT when it was first introduced in clinical practice (N = 34 dyads). Mean time post-onset was 11.5 months. Partners enjoyed the practical training in which they actively engaged through experiential learning methods. Partner scores increased significantly over the intervention time on task-oriented and avoidance-oriented coping skills and their symptoms of depression lowered significantly. Caregiver esteem was found to be a positive predictor of feelings of competence and enjoyment with the training. Older partners enjoyed the training less. More effort was given to the training by the partner when the aphasia was more severe.Conclusions: This study found that partners are willing to engage in CPT once the PWA returned home and the dyads were engaging in more everyday conversations in their home environment. The results underline the importance of partner characteristics, such as motivation, coping style and a positive outlook on caregiving as possible selection criteria for CPT.

PC-FACS

PC-FACS

Finding Benefit in Bereavement among Family Cancer Caregivers

Even though cancer is the second most common cause of death, little is known about the extent to which family caregivers find meaning and benefit in the loss, and associated demographic characteristics and caregiving experiences. This study addressed this gap in our knowledge. Family caregivers participated in a nationwide survey for cancer caregivers two years after the relative's diagnosis (T1). Of those, 121 were identified as bereaved by five years postdiagnosis (T2) and provided valid data for the study variables. Participants were primarily middle-aged, spouse of the deceased, and bereaved for an average of 2.9 years. Perceived caregiving stress, caregiver esteem, and patient's cancer severity as indicators of initial caregiving stressors and caregivers' demographics were measured at T1. Social support and time since bereavement as indicators of current resources and benefit finding in bereavement as an outcome were measured at T2. Reports of personal growth from bereavement emerged in multiple domains, although some caregivers were less likely to find benefit: nonspousal caregivers who had greater caregiving stress and spousal caregivers with lack of social support. Findings suggest that bereavement programs designed to help bereaved caregivers find meaning in the loss should be personalized reflecting individual differences in caregiving stress and caregiver esteem. Such programs should also be tailored differently for spousal versus nonspousal caregivers.

Parental caregiving of children prior to hematopoietic stem cell transplant

Using the Caregiver Reaction Assessment (CRA), we assessed positive reactions and burdens of the caregiving experience among parental caregivers (n = 189) of children scheduled to undergo hematopoietic stem cell transplant. Although widely used in non-parental caregivers, the CRA has not been used in parents of pediatric patients. Reliability (Cronbach's alpha: .72-.81 vs. .63) and concurrent validity (correlation: .41-.61 vs. .28) were higher for negatively framed than positively framed subscales. Results indicate that the caregiving experience is complex. The parents experienced high caregiver's esteem and moderate family support, but also negative impacts on finances and schedule, and to a lesser degree, health. Compared to non-parental caregivers, parental caregivers experienced higher esteem and more impact on finances and schedule.

Adherence to Oral Chemotherapy in Childhood Acute Lymphoblastic Leukemia: An Evolutionary Concept Analysis

To clarify the concept of adherence to daily oral chemotherapy in children with acute lymphoblastic leukemia (ALL), to examine its implications for clinical practice, and to provide a foundation for further research and knowledge development. Published literature identified through the MEDLINE®, CINAHL®, PsycINFO, and ERIC databases. Identified attributes of adherence to oral chemotherapy in childhood ALL included motivation, persistence, collaboration, mindfulness, cognitive capacity, flexibility, active participation, and identification of key participants in the process. Identified antecedents included a diagnosis of leukemia, the perceived value of adherence, and patient, family, and healthcare system-related factors. Identified consequences included the potential for maintaining optimal drug levels and improving disease outcome, as well as increased patient and caregiver esteem through active participation in the process. Adherence in the context of childhood ALL is defined as the active self-care behavior of taking (or having the responsibility for administering) daily oral chemotherapy, in collaboration with and according to the instructions of the healthcare provider over a defined, prolonged treatment period. Adherence to oral chemotherapy in childhood ALL is a complex, multidimensional behavior that involves not only a willingness to follow the prescribed regimen over a prolonged period, but also the cognitive capacity and psychomotor skills to carry out the process. Nurses should recognize the importance of clear communication of medication instructions, reinforcement of adherence-related behaviors, and assistance with common issues such as pill-swallowing skills and reminder systems in caring for children with ALL.

Factors Influencing Agreement in Symptom Ratings By Lung Cancer Patients and Their Significant Others

Comparisons of symptom ratings and health-related quality of life between significant others and patients have been the focus of numerous studies during the past decades. Additional studies are needed to assess the discrepancies identified in this work. In the present cross-sectional exploratory study, focus has been on evaluating the accuracy of significant other proxy ratings and on investigating factors that influence agreement between lung cancer patients and significant others based on dyadic assessments from 52 patients and 54 significant others. Results indicate that the levels of agreement are fair to good, but that significant others consistently rate the patients' symptoms higher and functioning lower than the patients do themselves. Factors found to influence agreement in various dimensions of symptoms and functioning were gender, patient age, and significant others' self-reported lack of family support, health problems, and caregiver esteem.

Gender differences in caregiving stress among caregivers of cancer survivors

Despite a growing body of research on male caregivers, limited information is available on male caregivers of cancer survivors. Furthermore, few studies have examined the unique contribution of caregiver esteem as well as care-recipient's functional status as potential mediators of the link between gender and caregiving stress. Thus, the present study examines how the caregiver's perception of providing care to a spouse with cancer differs by gender. The proposed mediators, caregiver's esteem and care-recipient's psychosocial and physical functioning, were tested simultaneously, utilizing structural equation modeling. Results revealed that both caregiver's esteem and care-recipient's psychosocial functioning were significant mediators, but in different directions. Specifically, husband caregivers reported higher caregiver's esteem, which resulted in reporting less stress from providing care to their wife with cancer. On the other hand, when husband caregivers provided care to their wife with poorer psychosocial functioning, they reported greater stress from caregiving. Husband caregivers will benefit from programs designed to educate them to effectively assist their wife's psychosocial adjustment to cancer by reducing their stress from providing care.

Development and testing of a new outcome measure of relationship between patients with Alzheimer's disease and their partners.

In mild Alzheimer's disease (AD), loss of relationship with the patient is a significant consequence for the partner (relative) and may be amenable to improvement with effective intervention. To evaluate relationship dynamics, the authors developed and tested content and discriminative validity of the self-administered Partner-Patient Questionnaire for Shared Activities among 100 partners of patients with mild to moderate Alzheimer's disease. Principal component analysis confirmed that interference in 17 activities derived from the literature and partner-specified activities comprised a relationship factor; internal consistency was very high. Time spent caregiving, caregiver esteem, lack of family support, and impact on partner health and activities were significant predictors of the Partner-Patient Questionnaire for Shared Activities, but the patient's cognitive and mood states were not. The Partner-Patient Questionnaire for Shared Activities warrants additional psychometric testing as a measure of Alzheimer's disease outcome.

Concepts in caregiver research.

To clarify and delineate conceptualizations of the effects of caregiving for nursing research and practice with family caregivers. The biopsychosocial (psychosocial and physiological) sequelae, both negative and positive, associated with providing care for a relative or friend with a chronic illness. Literature reviewed was obtained via searches of CINAHL, MEDLINE, and PsycInfo computerized databases through mid-2002. Key words for the searches were caregiver, caregiving, family caregiving, caregiver burden, and caregiver appraisal. Reports of both earlier reviews of literature and original research were included. Negative concepts included caregiver burden, hassles, strain, and stress. Positive concepts included caregiver esteem, uplifts of caregiving, caregiver satisfaction, finding or making meaning through caregiving, and gain in the caregiving experience. A neutral concept for describing the caregiving process is caregiver appraisal. Although earlier studies were focused on negative aspects of caregiving, more recent research has also included positive aspects. More attention should be given to (a) gender and cultural differences in caregiving, (b) development of flexible interventions, and (c) the biophysical sequelae of caregiving.

The changes in caregiver burden following nursing home placement

This longitudinal study explored changes in perceived burden among Taiwanese family caregivers ( n=77) from nursing home placement of an elder to four months postadmission. Higher burden at placement was related to the level of dependence of the care recipients ( p=0.004), or caregiver's poor health ( p<0.01). After nursing home placement for four months, global burden decreased ( p<0.01) contributed primarily by lessened burden in three sub-scales: lack of family support, impact of schedule and impact of health. Burden scores on caregiver esteem and impact of finances were not decreased after placement. Duration of caregiving was the only demographic factor predicting change in global burden ( p<0.001). Changes in impact on finances, and impact on health were, respectively, predicted by the perceived health ( p=0.005), and religious preference ( p=0.01). These results provide valuable information to healthcare providers for an understanding of the changes of caregiving burden after nursing home placement and the correlates of these changes, which may help devise an appropriate policy for alleviating the caregiver's burden.

Caregiving and care receiving among a technologically dependent heart failure population.

This descriptive study investigated health-related quality of life (HRQOL) and caregiving/care receiving among 20 end stage heart failure patients receiving community-based inotropic infusions and among their 18 family caregivers. The analysis revealed that care recipients perceived considerable impairment from their disease process and poor HRQOL despite the use of inotropic infusions. Perceived powerlessness was identified as a predictor of the recipients' mental health status, while caregiver esteem adversely affected recipient HRQOL. Although insufficient preparation to care and caregiving tasks significantly contributed to the negative aspects of care provision. the esteem and mental health of the caregiver significantly enhanced HRQOL among caregivers.