Caregiver Reaction Assessment Research Articles

Caregivers’ Burden and Anticipatory Grief Increases Acute Health Care Use in Older Adults with Severe Dementia

ObjectivesTo assess the bidirectional association of caregivers’ burden and anticipatory grief with acute health care use (inpatient or emergency admission) among older adults with severe dementia. DesignProspective cohort. Setting and ParticipantsA total of 215 family caregivers of older adults with severe dementia in Singapore were surveyed every 4 months for 3 years (up to 10 surveys). We measured caregiver burden using the Caregiver Reaction Assessment scale and anticipatory grief using the Marwit Meuser Caregiver Grief Inventory-Short Form. MethodsUsing separate multivariable mixed-effects logistic regressions, controlling for relevant confounders, we assessed the association of caregiver burden and anticipatory grief (independent variables measured at time t) with older adults' acute health care use in the next 4 months (outcome measured at time t + 1). We also performed separate multivariable mixed-effects linear regressions to assess the association of older adults’ acute health care use in the past 4 months (independent variable measured at time t) with caregiver burden and anticipatory grief (outcomes measured at time t). ResultsAt baseline, 33% of the older adults had an inpatient or emergency admission in the past 4 months. Regression results showed that higher caregiver burden [odds ratio (OR), 1.58; 95% CI, 1.15–2.16] and anticipatory grief (OR, 1.02; 95% CI, 1.00–1.04) significantly increased the likelihood of older adults experiencing acute health care use in the next 4 months. However, older adults' acute health care use in the past 4 months did not significantly change their caregivers’ burden or anticipatory grief. Conclusions and ImplicationsHigher caregiver burden and anticipatory grief increase the likelihood of older adults having acute health care use. Addressing caregivers’ well-being has implications for reducing acute health care use in older adults and the economic burden of severe dementia.

Trajectories of negative and positive experiences of caregiving for older adults with severe dementia: application of group-based multi-trajectory modelling.

Family caregivers of older adults with severe dementia have negative and positive experiences over the course of caregiving. We aimed to delineate joint trajectories (patterns over time) for negative and positive experiences, identify risk factors associated with membership of joint trajectories, and ascertain the association between joint trajectories and caregivers' outcomes after the death of the older adult. Two hundred fifteen family caregivers of older adults with severe dementia in Singapore were surveyed every 4 months for 2 years, and 6 months after the death of the older adult. Using group-based multi trajectory modelling, we delineated joint trajectories for positive (Gain in Alzheimer Care Instrument) and negative (sub-scales of modified Caregiver Reaction Assessment) experiences of caregiving. We identified four joint trajectories - "very high positive, low negative" (23% of caregivers), "high positive, moderate negative" (28%), "very high positive, moderate negative" (28%), and "high positive, high negative" (21%). Caregivers of older adults with more behavioural symptoms, and who did not receive strong emotional support from family were more likely to have "high positive, moderate negative" or "very high positive, moderate negative" trajectory. Compared to caregivers with "very high positive, low negative" trajectory, caregivers with "very high positive, moderate negative" or "high positive, high negative" trajectories expressed greater grief and distress, with the latter also having lower spiritual well-being and quality of life at 6 months after the death of the older adult. The caregiving experiences for older adults with severe dementia vary between caregivers but remain stable over time. Modifiable risk factors identified for trajectories involving negative experiences of caregiving may be targeted in future interventions to improve the experience of caregiving and caregiver quality of life and distress after the death of the older adult. http://www. gov (NCT03382223).

Development of a short form of the Japanese version of the Caregiver Reaction Assessment (CRA-J-10) among informal caregivers of older adults.

To support informal caregivers, a simple assessment tool capturing the multidimensional nature of caregiving experiences, including negative and positive aspects, is required. We developed a short form of the Japanese version of the Caregiver Reaction Assessment (CRA-J), a multidimensional assessment scale for caregiver experiences. The internet survey involved 934 Japanese informal caregivers aged 20-79 years (mean age = 58.8 years; 50.2% women) who completed questionnaires, including the CRA-J 18 items (CRA-J-18), consisting of five domains, such as impacts on schedule and finances and positive experiences of caregiving. A 10-item short version of the CRA-J (CRA-J-10; 0-50 points), which was prepared by selecting the two items with the highest factor loadings from each domain, was tested for model fit by confirmatory factor analysis (CFA) and was analyzed for correlations with the CRA-J-18, Zarit Burden Interview (ZBI), Positive Aspects of Caregiving Scale (PACS), Patient Health Questionnaire-9 (PHQ-9), and WHO-Five Well-Being Index (WHO-5). The area under the curve (AUC) in the receiver operating characteristic was evaluated as discriminability for depressive symptoms (PHQ-9 ≥ 10 points). The CFA indicated a good model fit in the CRA-J-10. The CRA-J-10 correlated well with the CRA-J-18 and other variables (CRA-J-18, r = 0.970; ZBI, r = 0.747; PACS, r = -0.467; PHQ-9, r = 0.582; WHO-5, r = -0.588) and showed good discriminant performance for the presence of depressive symptoms (AUC = 0.793, 95% confidence interval = 0.762-0.823). The CRA-J-10 allows a simple assessment of caregiver experiences, helping support informal caregivers. Geriatr Gerontol Int 2024; 24: 290-296.

Spirituality moderates the relationship between cancer caregiver burden and depression.

Cancer has become a chronic disease that requires a considerable amount of informal caregiving, often quite burdensome to family caregivers. However, the influence of spirituality on the caregivers' burden and mental health outcomes has been understudied. This study was to examine how caregiver burden, spirituality, and depression change during cancer treatment and investigate the moderating role of spirituality in the relationship between caregiver burden and depression for a sample of caregivers of persons with cancer. This secondary analysis used a longitudinal design employing 3 waves of data collection (at baseline, 3 months, and 6 months). Family caregivers completed the Caregiver Reaction Assessment, Spiritual Perspective Scale, and the PROMIS® depression measure. Linear mixed model analyses were used, controlling for pertinent covariates. Spirituality, total caregiver burden, and depression remained stable over 6 months. More than 30% of the caregivers had mild to severe depressive symptoms at 3 time points. There was evidence of overall burden influencing depression. Of note was a protective effect of caregivers' spirituality on the relationship between depression and caregiver burden over time (b = -1.35, p = .015). The lower the spirituality, the stronger the relationship between depression and burden, especially regarding subscales of schedule burden, financial burden, and lack of family support. Spirituality was a significant resource for coping with caregiving challenges. This study suggests that comprehensive screening and spiritual care for cancer caregivers may improve their cancer caregiving experience and possibly influence the care recipients' health.

Factors contributing to emotional distress when caring for children with imperforate anus: a multisite cross-sectional study in China.

Imperforate anus (IA) has a life-long impact on patients and their families. The caregivers of children with IA (CoCIA) might experience distress, which could be detrimental to them physically and mentally. However, there are limitations in the related studies. This study aimed to investigate the prevalence of IA and the associated factors contributing to the distress experienced by CoCIA. A cross-sectional study was conducted in three tertiary children's hospitals from November 2018 to February 2019. Distress was assessed using the Chinese version of the Kessler Psychological Distress Scale, and possible determinants were assessed by the Caregiver Reaction Assessment, the Parent Stigma Scale, the Parent Perception of Uncertainty Scale, and the Social Support Scale. Demographic and clinical information was also collected. Multiple regression analysis was performed to explore the association between variables. Out of 229 CoCIA, 52.9% reported experiencing a high level of distress or above. The data analysis revealed that health problems associated with caregiving, stigma, uncertainty, social support, and children who underwent anal reconstruction surgery 1 year before or earlier could significantly predicate caregivers' distress, and these factors could explain 50.1% of the variance. The majority of the caregivers of children with IA experience high levels of distress, particularly when their children undergo anal reconstruction surgery 1 year before or earlier. Additionally, health problems related to caregiving, stigma, uncertainty, and low social support could significantly predicate caregivers' distress. It is important for clinical staff to be aware of the prevalent situation of caregivers' distress and to make targeted interventions focused on addressing modifiable factors that should be carried out in family-based care.

Spiritual Coping in Family Caregivers of Patients With Advanced Cancer: A Cross-Sectional Study

ContextFamily caregivers face significant challenges when providing care to individuals with advanced cancer. Spiritual coping strategies may support caregivers in addressing these challenges. ObjectivesWe evaluated spiritual coping levels among Chinese family caregivers of patients with advanced cancer and explored associated factors. MethodsThis cross-sectional study recruited 358 family caregivers of patients with advanced cancer. The Spiritual Coping Scale was used to evaluate spiritual coping levels, while various scales, including the Caregiver Reaction Assessment Scale, General Self-Efficacy Scale-Schwarzer, and Perceived Social Support Scale, were used to identify influencing factors. T-tests and analysis of variance were used for group comparisons. Pearson's correlation and multivariate linear regression were used to analyze the associated factors. ResultsChinese family caregivers of patients with advanced cancer had moderate spiritual coping levels. Differences in spiritual coping levels were observed in sex, religion, and the presence or absence of anxiety and depression (p < 0.05). Women and caregivers who identified as religious had higher levels, while those with anxiety or depression had lower levels. Spiritual coping was positively correlated with self-efficacy and spiritual health (p < 0.01). Multiple linear regression analysis revealed that religion, anxiety, depression, self-efficacy, and spiritual health were statistically significant associated factors for spiritual coping scores, explaining 43.3% of the variance in scores (F = 53.769, p < 0.001). ConclusionThe spiritual coping of Chinese family caregivers should be considered by health care providers, who should focus on alleviating their anxiety and depression while improving self-efficacy and spiritual health, especially among nonreligious caregivers.

QOL-08. LONGITUDINAL EFFECTS OF A PSYCHOLOGICAL INTERVENTION FOR CAREGIVERS OF PATIENTS WITH PRIMARY MALIGNANT BRAIN TUMORS: SECONDARY ANALYSIS OF A RANDOMIZED CONTROLLED TRIAL

Abstract BACKGROUND Caregivers of patients with primary malignant brain tumors (PMBT) experience high rates of anxiety. In our randomized controlled trial assessing the effects of a caregiver-directed, telehealth-based psychological intervention (“NeuroCARE”), NeuroCARE participants had significantly lower anxiety symptoms (primary outcome) and depression symptoms, and better self-efficacy and coping immediately post-intervention compared to usual care (UC). We subsequently examined the longitudinal effects of NeuroCARE on caregiver-reported outcomes across all study timepoints. METHODS We enrolled and randomized 120 caregivers of patients with PMBT to NeuroCARE (N = 60) versus usual supportive care (N = 60). Eligible participants had significant baseline anxiety symptoms (Generalized Anxiety Disorder-7 score ≥ 5). We collected caregiver-reported anxiety symptoms (Hospital Anxiety and Depression Scale (HADS)–Anxiety Subscale), depression symptoms (HADS–Depression Subscale), self-efficacy (Lewis Cancer Self-Efficacy scale), coping (Measure of Current Status), quality of life (QOL; CareGiver Oncology Quality of Life survey), caregiver burden (Caregiver Reaction Assessment) and post-traumatic stress disorder (PTSD) symptoms (PTSD Checklist for DSM-5) at baseline, 11 weeks (immediately post-intervention) and 16 weeks (one-month post-intervention). We used mixed effects linear regression models to assess longitudinal intervention effects on study outcomes. RESULTS Enrolled caregivers had a mean age of 53 years; the majority were female (99/120; 82.5%) and were the patient’s spouse/partner (84/120; 70%). NeuroCARE participants experienced greater improvement than UC in depression symptoms (change/week [slope]: -0.09 vs. -0.01, p = 0.041), self-efficacy (slope: 0.64 vs. -0.17, p = 0.006) and coping (slope: 0.31 vs. -0.01, p &amp;lt; 0.001). We observed non-statistically significant differences between NeuroCARE and UC for change in anxiety symptoms (slope: -0.13 vs. -0.05, p = 0.059) and QOL (slope: 0.26 vs. 0.04, p = 0.050). Study arms did not differ in longitudinal trajectories for caregiver burden or PTSD symptoms. CONCLUSIONS NeuroCARE participants experienced greater improvements over time in depression symptoms, self-efficacy, and coping than UC participants, highlighting the sustained benefits of this caregiver-directed supportive intervention.

Quality of Relationships and Caregiver Burden: A Longitudinal Study of Caregivers for Advanced Cancer Patients.

In a longitudinal design, this study investigates the role of the quality of relationships in the well-being of caregivers for a family member with advanced cancer, specifically, the quality of relations among family members and the caregiver's commitment to caregiving. Following the stress process model, good quality of relations and caregiver's high commitment should be resources mitigating caregiver burden, even though overinvestment in the caregiver role may lead to the opposite outcome. Data were drawn from a longitudinal study of 336 caregivers of advanced cancer patients in an urban community, who were interviewed shortly after patient diagnosis and again 3 months later. Caregiver burden is measured by 4 subscales (17 items) of the Caregiver Reaction Assessment. We used a random-effect model to investigate the association between caregiver burden and the 2 focused contributing factors-caregiver commitment and family relationship quality-when other covariates were controlled. A fixed-effect model then examines the association between the changes in caregiver burden and related time-varying factors, including caregiver commitment, when family relationship quality was used as a moderator. Both the random and fixed-effect models consistently show that a cancer caregiver's positive commitment to the patient reduces caregiver burden, and family relationship quality provides an overall moderating influence that reduces the felt burden. The quality of relations between the caregiver and patient and with others in the family network is critical in understanding caregiver burden in advanced cancer and should be viewed as part of long-term family dynamics.

Impact of a COVID-19-Related Lockdown on the Experience of Informal Caregiving in Singapore

Introduction: Lockdowns, while limiting COVID-19 transmission, can affect provision of care by informal caregivers and their caregiving experience. We assessed, among informal caregivers in Singapore, (a) the perceived impact of a 2-month (April to May 2020) nationwide lockdown on their care provision, (b) correlates of different perceptions of the impact of the lockdown on care provision, and (c) association of different perceptions of the impact with negative and positive experiences of caregiving. Methods: In the August 2020 wave of the Singapore Life Panel (SLP; nationally representative, longitudinal monthly survey of Singapore citizens and permanent residents aged 50–70 years at baseline), 1,094 participants identified as informal caregivers reported whether their care provision became easier, remained the same, or became harder during the lockdown, compared to before the lockdown. We used multinomial logistic regression to assess the association of caregiver, care recipient, and caregiving context characteristics with their perceptions. Linear regression models examined the association of their perceptions with negative and positive experience domains of the modified Caregiver Reaction Assessment. Results: Just over one-third (36.1%) of the informal caregivers reported that their care provision became harder during the lockdown compared to before the lockdown. However, nearly one-fifth (18.0%) said that it became easier, and the rest (45.9%) said that it remained the same. Care provision was more likely to be perceived as having become harder among caregivers who were male, of Chinese ethnicity, in worse health, whose care recipients had functional limitations, who did not have caregiving support from cohabiting family members before the lockdown, and who had caregiving support from non-cohabiting family members before the lockdown. The perception that care provision became easier was less likely among caregivers who were of higher age, were unemployed, were socially isolated, and whose care recipients had functional limitations. Caregivers who perceived that care provision became harder during the lockdown were worse-off in negative experiences of caregiving. Conclusion: A nationwide lockdown did not make care provision harder for all informal caregivers. However, informal caregivers for whom it did were more likely to have greater negative experiences of caregiving. The heterogeneity of the impact of lockdowns and the possibility of offering flexibility to non-cohabiting family members who support caregiving should be important considerations when planning for such disruptions.

Predictors of Healthcare Utilization in Family Caregivers of Persons With a Primary Malignant Brain Tumor.

BACKGROUND: Negative physical health results from the emotional stress of providing care to a family member with a primary malignant brain tumor; however, the downstream effects on caregivers' healthcare utilization (HCU) are unknown. This analysis examined associations between caregivers' emotional health and markers of HCU during the 6 months after patients' diagnoses. METHODS: Caregivers' self-report HCU data from a longitudinal study with 116 neuro-oncology caregivers were analyzed. Healthcare utilization was operationalized as number of prescription medications, reporting visits to primary care providers (PCPs), nature of PCP visit, number of comorbid conditions, and change in comorbid conditions. Potential predictors were caregivers' depressive symptoms (Center for Epidemiologic Studies-Depression Scale), hours providing care per day, mastery (Pearlin and Schooler), and burden (Caregiver Reaction Assessment). Logistic mixed effects modeling were used. RESULTS : Caregivers with higher levels of depressive symptoms ( P < .01), anxiety ( P = .02), burden related to schedule ( P = .02), and abandonment ( P < .01) were more likely to report worsening comorbid conditions. Those with higher mastery ( P = .02) were less likely to report worsening comorbid conditions. Caregivers who had a PCP visit and reported higher burden related to feelings of self-esteem ( P = .03) were more likely to report an illness-related visit. CONCLUSION : Findings suggest a relationship between neuro-oncology caregivers' emotional health and their HCU. Data highlight the importance of caregivers' PCPs identifying caregivers at risk for deteriorating health and increased HCU and intervene to ensure caregivers' self-care.

Insomnia Burden among Informal Caregivers of Hospitalized Lung Cancer Patients and Its Influencing Factors

ObjectiveThis study aimed to reveal the insomnia burden and relevant influencing factors among informal caregivers (ICs) of hospitalized patients with lung cancer. MethodsA cross-sectional study on ICs of hospitalized patients with lung cancer was conducted from December 31, 2020 to December 31, 2021. ICs’ burden was assessed using the Caregiver Reaction Assessment (CRA), Hospital Anxiety and Depression Scale (HADS), and Insomnia Severity Index (ISI). Linear and logistic regression models were used to identify the influencing factors. ResultsAmong 289 ICs of hospitalized patients with lung cancer, 83 (28.72%), 53 (18.34%), and 14 (4.84%) ICs experienced mild, moderate, and severe insomnia, respectively. The scores concerning self-esteem, lack of family support, financial problems, disturbed schedule, and health problems were 4.32 ± 0.53, 2.24 ± 0.79, 2.84 ± 1.14, 3.63 ± 0.77, and 2.44 ± 0.95, respectively. ICs with higher Activities of Daily Living Scale (ADLS) scores were associated with a lower risk of insomnia, with an odd ratio (OR) and 95% confidence interval (CI) of 0.940 (0.898–0.983). Among the ICs, female gender (OR = 2.597), alcohol consumption (OR = 3.745), underlying medical conditions (OR = 11.765), long-term caregiving experience (OR = 37.037), and higher monthly expenses (OR = 5.714) were associated with a high risk of insomnia. ConclusionOf the hospitalized patients with lung cancer, 51.9% experienced insomnia. Patients’ ADL, ICs gender, alcohol consumption, underlying medical conditions, caregiving duration, and monthly expenses were influencing factors. Therefore, prompt screening and early intervention for ICs of patients with lung cancer is necessary.

An analysis of caregiver burden assessments using the International Classification of Functioning, Disability, and health (ICF): what aspects of burden are measured, and what is missing?

Purpose To determine if commonly used caregiver burden assessments, Zarit Burden Interview(ZBI), Caregiver Reaction Assessment Scale(CRA), Caregiver Burden Inventory(CBI), and Caregiver Strain Index(CSI), provide clinicians and researchers with a comprehensive understanding of the burden that informal caregivers face. Materials and methods Meaningful concepts, identified from these assessments, were linked to the most appropriate and precise International Classification of Functioning, Disability, and Health (ICF) code by experienced coders using a validated standardized ICF linking technique. Descriptive statistics were used to examine and compare the comprehensiveness of each assessment. Results A total of 120 meaningful concepts identified from 83 items, represented three of the four ICF domains: 1) Body functions (27%), 2) Activities and Participation (29%), and 3) Environmental factors (5%). Eleven percent of concepts were too vague to be coded, and 25% were clearly defined but not included in the ICF. Six of the 17 epidemiologic factors of caregiver burden were covered by the assessments combined. Conclusions Linking commonly used caregiver burden assessments to the ICF and comparing the results to the epidemiologic factors of caregiver burden suggests that the assessments may not be capturing many of the factors associated with caregiver burden. This, in turn, may be hindering the development and implementation of effective caregiver education and interventions.

Longitudinal Analysis of Caregiver Burden in Head and Neck Cancer

Despite the critical role of caregivers in head and neck cancer (HNC), there is limited literature on caregiver burden (CGB) and its evolution over treatment. Research is needed to address evidence gaps that exist in understanding the causal pathways between caregiving and treatment outcomes. To evaluate the prevalence of and identify risk factors for CGB in HNC survivorship. This longitudinal prospective cohort study took place at the University of Pittsburgh Medical Center. Dyads of treatment-naive patients with HNC and their caregivers were recruited between October 2019 and December 2020. Eligible patient-caregiver dyads were 18 years or older and fluent in English. Patients undergoing definitive treatment identified a caregiver as the primary, nonprofessional, nonpaid person who provided the most assistance to them. Among 100 eligible dyadic participants, 2 caregivers declined participation, resulting in 96 enrolled participants. Data were analyzed from September 2021 through October 2022. Participants were surveyed at diagnosis, 3 months postdiagnosis, and 6 months postdiagnosis. Caregiver burden was evaluated with the 19-item Social Support Survey (scored 0-100, with higher scores indicating more support), Caregiver Reaction Assessment (CRA; scored 0-5, with higher scores on 4 subscales [disrupted schedule, financial problems, lack of family support, and health problems] indicating negative reactions, and higher scores on the fifth subscale [self-esteem] indicating favorable influence); and 3-item Loneliness Scale (scored 3-9, with higher scores indicating greater loneliness). Patient health-related quality of life was assessed using the University of Washington Quality of Life scale (UW-QOL; scored 0-100, with higher scores indicating better QOL). Of the 96 enrolled participants, half were women (48 [50%]), and a majority were White (92 [96%]), married or living with a partner (81 [84%]), and working (51 [53%]). Of these participants, 60 (63%) completed surveys at diagnosis and at least 1 follow-up. Of the 30 caregivers, most were women (24 [80%]), White (29 [97%]), married or living with a partner (28 [93%]), and working (22 [73%]). Caregivers of nonworking patients reported higher scores on the CRA subscale for health problems than caregivers of working patients (mean difference, 0.41; 95% CI, 0.18-0.64). Caregivers of patients with UW-QOL social/emotional (S/E) subscale scores of 62 or lower at diagnosis reported increased scores on the CRA subscale for health problems (UW-QOL-S/E score of 22: CRA score mean difference, 1.12; 95% CI, 0.48-1.77; UW-QOL-S/E score of 42: CRA score mean difference, 0.74; 95% CI, 0.34-1.15; and UW-QOL-S/E score of 62: CRA score mean difference, 0.36; 95% CI, 0.14-0.59). Woman caregivers had statistically significant worsening scores on the Social Support Survey (mean difference, -9.18; 95% CI, -17.14 to -1.22). The proportion of lonely caregivers increased over treatment. This cohort study highlights patient- and caregiver-specific factors that are associated with increased CGB. Results further demonstrate the potential implications for negative health outcomes for caregivers of patients who are not working and have lower health-related quality of life.

Telehealth-based psychological intervention for caregivers of patients with primary malignant brain tumors: A randomized controlled trial.

12008 Background: Caregivers of patients with primary malignant brain tumors (PMBT) face unique challenges caring for someone with a progressive neurological illness. In preliminary studies, we found that 50% or more of caregivers had clinically significant anxiety symptoms in the months following the patient’s PMBT diagnosis. However, few interventions have been developed to specifically target anxiety symptoms in this population. Methods: We conducted a randomized controlled trial evaluating the efficacy of NeuroCARE, a population-specific intervention addressing anxiety in caregivers of patients receiving treatment at two academic centers. Eligible caregivers were within six months of the patient’s PMBT diagnosis and had clinically significant anxiety symptoms (score ≥ 5 on the Generalized Anxiety Disorder-7 tool). Participants were randomized 1:1 to NeuroCARE or usual care. NeuroCARE consisted of six one-on-one telehealth sessions with a mental health clinician or trainee and incorporated evidence-based skills for 1) coping with worry, 2) using assertive communication techniques, 3) optimizing social support, and 4) promoting relaxation and healthy sleep. Participants completed questionnaires at baseline, 11 weeks (immediately post-intervention) and 16 weeks (1 month post-intervention). Our primary endpoint was anxiety symptoms at 11 weeks (Hospital Anxiety and Depression Scale (HADS) – Anxiety Subscale score). We also assessed depression symptoms (HADS – Depression Subscale), quality of life (QOL; Caregiver QOL survey), caregiver burden (Caregiver Reaction Assessment), self-efficacy (Lewis Cancer Self-Efficacy scale), coping (Measure of Current Status) and post-traumatic stress disorder (PTSD) symptoms (PTSD Checklist for DSM-5). We used analysis of covariance to evaluate the effect of NeuroCARE versus usual care on these outcomes. Results: We enrolled 120 caregivers (60 per arm, mean age = 53 years, 83% female), the majority of whom were caring for their spouse/long-term partner (70%), child (17%), or parent (7%). At 11 weeks, NeuroCARE participants reported significantly lower anxiety symptoms than those assigned to usual care (means: 8.87 vs 10.69, p = 0.008). NeuroCARE caregivers also reported significantly lower depression symptoms (6.08 vs 7.77, p = 0.004) and better self-efficacy (128.81 vs 111.17, p &lt; 0.001) and coping (32.25 vs 25.65, p &lt; 0.001) at 11 weeks. Study groups did not differ with respect to caregiver burden, PTSD symptoms, or QOL at 11 weeks. Conclusions: A population-specific telehealth-based psychological intervention (NeuroCARE) led to significantly lower anxiety and depression symptoms and better self-efficacy and coping among caregivers of patients with PMBT compared with usual supportive care. Clinical trial information: NCT04109209 .

Assessing impact, needs and quality-of-life among informal carers of people with pancreatic cancer, a prospective study: the PAN-CARER study protocol

IntroductionApproximately 10 300 people are diagnosed with pancreatic cancer each year in the UK. The cancer and its treatment inflict a significant physical, functional and emotional burden on patients. Research...

Burden of Family Caregivers of Patients with Oral Cancer in Home Care in Taiwan.

Oral cancer is currently the fourth leading cause of cancer-related death in Taiwan. The complications and side effects of oral cancer treatment cause a tremendous burden on patients' family caregivers. This study explored the burden on primary family caregivers of patients with oral cancer and its related factors. One hundred and seven patients with oral cancer and their primary family caregivers were included through convenience sampling. The Caregiver Reaction Assessment (CRA) scale was employed as the primary research instrument. The primary factors of caregiver burden, in descending order, were disrupted schedules (M = 3.19, SD = 0.84), a lack of family support (M = 2.82, SD = 0.85), health problems (M = 2.67, SD = 0.68), and financial problems (M = 2.59, SD = 0.84). The CRA scores of the caregivers differed significantly in terms of education level (t = 2.57, p < 0.05) and household income (F = 4.62, p < 0.05), which significantly predicted caregiver burden (R2 = 0.11, F = 4.32, p = 0.007). The study results provide a reference for healthcare professionals to identify the factors for family caregiver burden, as well as the characteristics of patients and family caregivers particularly vulnerable to caregiver burden, thus improving family-centred care.

Economic Impacts and Quality of Life for Caregivers of Patients with Retinitis Pigmentosa: A Cross-Sectional Japanese Study.

Retinitis pigmentosa (RP) is the second leading cause of visual impairment in Japan and causes progressive vision loss in affected patients. Caregiving for patients with RP is associated with socioeconomic impacts; however, data on the magnitude and scope of these impacts are lacking. This cross-sectional study surveyed informal caregivers of patients with RP in Japan. The questionnaire assessed the socioeconomic status of participants; work impacts through the Work Productivity and Activity Impairment Questionnaire adapted for caregivers; and quality of life impacts through the Japanese version of the Caregiver Reaction Assessment (CRA) and the 5-level EQ-5D version (EQ-5D-5L). Of the 37 participating caregivers, 28 (75.7%) were employed. Among those, the average annual income was 2,722,080 yen (n = 20) and the mean loss of work productivity was 6.6%. The mean EQ-5D-5L index score was 0.882, and the mean CRA total score was 2.1. A mild to very severe impact on family life, leisure and hobbies, social life, and mental health was experienced by 83.8%, 78.4%, 75.7%, and 70.3%, respectively. These results suggest that caregivers of patients with RP may be disadvantaged in terms of employment and income and may experience wide-ranging impacts on their quality of daily life.

Caregiving burdens of family members of patients living with hepatocellular carcinoma.

Caregiving burden is common among family caregivers (FCs). In Taiwan, no reports have compared caregiving burden according to disease stage, or explored the comprehensive factors of caregiving burden in the FCs of patients with hepatocellular carcinoma (HCC). The aim of the study was to investigate caregiving burden at different diagnosis stages and its potential predictors in the FCs of patients with hepatocellular carcinoma. This descriptive, cross-sectional study included 192 FCs. Caregiving burden was measured using the Caregiver Reaction Assessment tool. The predictive factors of caregiving burden in the FCs of patients with HCC were identified using a linear regression model. The global caregiving burden had no significant differences between the four disease stages. The lack of family support and impact on schedule were significantly higher at the terminal stage than at the earlier stage. The risk factors of caregiving burden were high depression, high financial demand, heavy caregiving tasks, advanced age and frequent patient contact, which obtained a variance of 47.8% in the regression model. Healthcare providers need to proactively identify and assess FCs with risk factors of caregiving burden and provide appropriate interventions specific to individual needs at different disease stages.

The experience of being a caregiver of patients with digestive cancer, from patients and caregivers' perception: A mixed study.

Caregivers are essential in the care of a patient with digestive cancer. Considering their experience and needs is crucial. To explore the experience of caregivers of patients with digestive cancer and to compare the perspectives of patients and caregivers. A mixed-methods study with a cross-sectional prospective and a comprehensive qualitative dimension was performed in a medical oncology unit in a French tertiary hospital. Dyads made of patients with digestive cancer and their caregiver were recruited. The Caregiver Reaction Assessment (CRA) and the Supportive Care Needs Survey for Partners and Caregivers (SCNS-PC) questionnaires were distributed to caregivers. The CRA was used to measure the caregiver burden and the SCNS-PC was used to identify the unmet supportive care needs of caregivers. Semi-structured interviews with the dyads were conducted. Qualitative interviews addressed various dimensions of the caregiver's experience from each dyad's member perspective. Thirty-two caregivers completed the questionnaires. Responses showed high self-esteem, schedule burden, and a need for care and information services. Ten dyads participated in the interviews. Three themes emerged from the caregiver's interviews: illness is an upheaval; loneliness and helplessness are experienced; caring is a natural role with positive outcomes. Four themes emerged from patient's interviews: the caregiver naturally assumes the role and gets closer; he is the patient's anchor; his life is disrupted; anxiety and guilt accompany the desire to protect him. In comparing patient and caregiver data, the main theme of disagreement was their relationship. Caregiver care does not appear to be optimal, particularly in terms of their need for information. Patients have a fairly good representation of their experience, but the caregivers' opinion need to be considered.

Family Caregivers of Adult Cancer Patients in Oman: Predictors of Caregivers' Self-efficacy for Cancer Pain and Related Symptom Management at Home.

Family caregivers (FCGs) contribute significantly to the management of pain and other symptoms experienced by their family member with cancer and may not receive preparation to meet the changing patient needs. The aim of this study was to identify the predictors of FCG self-efficacy (SE) for pain and related symptom management of adult family members with cancer. Data were collected from 165 Omani FCGs. The questionnaire comprised the caregiver cancer pain and related symptom management SE scale, the Katz index, Caregiver Reaction Assessment, and Family Pain Questionnaire. Electronic medical records provided data on patients' cancer diagnosis, pain, and symptoms. Predictors of SE were examined using linear regression analysis. Most FCGs were female (58.2%) and children of the patient (53.9%). Most patients were on chemotherapy or palliative care (82.4%) and had at least stage 3 cancer (58.8%). Family caregivers reported average SE. The predictors of SE were as follows: patients' functional status (β = 40.90, P = .001), patients' pain intensity (β = -15.10, P = .036), FCGs' confidence in controlling the patients' pain (β = 28.80, P = .000), FCGs' self-rated health (β = -25.90, P = .038), and interaction of FCGs' knowledge level with patients' pain intensity (β = -1.31, P = .008), caregiving hours (β = -0.10, P = .025), and impact of caregiving on FCGs' physical health (β = 1.29, P = .031). Family caregivers' health status, knowledge, caregiving demands, patient functional status, and pain intensity have a significant effect on caregivers' symptom management. A deliberate model of care that includes supportive interventions to enhance the abilities of FCGs with symptom management is needed in Oman.