Caregiver Strain Index Scores Research Articles

Açık Kalp Cerrahisi Geçiren Yaşlı Hastaların Refakatçilerinin Bakım Yükü ve Stres Durumlarının İncelenmesi: Tanımlayıcı Araştırma

Objective: This study aimed to examine the care burden and stress levels of companions of elderly patients undergoing open heart surgery. Material and Methods: This descriptive and cross-sectional study was carried out in a university hospital with 44 companions giving care to elderly patients who underwent open heart surgery. Data were collected using a questionnaire which was prepared by the researchers and consists of four parts. The first part includes a patient introduction form and the second part includes a companion introduction form. The third and fourth parts consist of the Burden Interview and the Caregiver Strain Index. Research data were collected by face-to-face interview method. Descriptive statistics, independent sample t-test, one-way analysis of variance, and correlation analyses were used for data analysis. Results: The mean age of the companions included in the study was 51.50±13.2 (minimum: 28, maximum: 74). Of the companions, 77.3% were female; 84.1% were married; 40.9% were the spouses of the patients; 34.1% were literate, primary-secondary school graduates, and high school graduates; 45.5% were housewives. The mean Burden Interview score was 30.34±11.92 and the mean Caregiver Strain Index score was 5.65±3.62. There was a positive statistically significant correlation between the mean Burden Interview score and the mean Caregiver Strain Index scores (r=0.744, p=0.000). Conclusion: This study showed that an increase in care burden cause an increase in stress.

Impact on caregivers of adult patients receiving parenteral support for short-bowel syndrome with intestinal failure: A multinational, cross-sectional survey.

BackgroundPatients with short‐bowel syndrome and intestinal failure (SBS‐IF) require parenteral support (PS) and may need long‐term home‐care support. This survey assessed the impact of care provision on adult caregivers of adult patients receiving PS for SBS‐IF.MethodsAn online, cross‐sectional survey of caregivers of adults with a self‐reported physician diagnosis of SBS‐IF was conducted in France, Germany, Italy, the UK, and USA. Impact on caregivers was evaluated using the 18‐item Caregiver Strain Index (CSI), the Work Productivity and Activity Impairment Questionnaire: Specific Health Problem (WPAI:SHP), and self‐reporting impact questionnaires.ResultsCaregivers (N = 121; aged 51 ± 13.7 years; 59% women) provided assistance for a mean of 9.9 ± 12.53 years; 77% were providing care 7 days per week. Patients (51 ± 16.4 years; 56% women) of caregivers were typically family members: spouse/partner (61%), adult son/daughter (19%), or parent (10%). Caregivers reported experiencing some strain (CSI score 4 ± 3.4). Among 71 of 73 employed caregivers, the WPAI:SHP assessment showed that caregivers missed 7% ± 12.7% of work hours in the preceding week and were present but not productive at work 37% ± 23.1% of the time; 28% of caregivers reported a reduced number of working hours because of caregiving. Many caregivers reported limitations in recreational activities (53%), and ≥30% had difficulty spending time with family and friends. Caregivers (87%) also reported worrying about the patient's health.ConclusionsCaregivers of adult patients with SBS‐IF experience negative daily personal impacts and loss of productivity arising from their caregiving responsibilities.

Caregiver burden in patients with behavioural variant frontotemporal dementia and non-fluent variant and semantic variant primary progressive aphasia

Studies on caregiver burden in patients with frontotemporal lobar degeneration are rare, differ methodologically and show variable results. Single center longitudinal pilot study on caregiver burden and potential risk factors in patients with behavioural variant frontotemporal dementia (bvFTD) and semantic (svPPA) and non-fluent variants (nfvPPA) primary progressive aphasia. Forty-six bvFTD, nine svPPA, and six nfvPPA patients and caring relatives were analysed for up to 2 years using the Mini-Mental State Examination as global measure for cognitive performance, Frontal Assessment Battery (frontal lobe functions), Frontal Behavioural Inventory (personality and behaviour), Neuropsychiatric Inventory (dementia-related neuropsychiatric symptoms), Barthel Index and Lawton IADL Scale (basic and instrumental activities of daily living), the Caregiver Strain Index (CSI), and in most participants also the Zarit Burden Interview (ZBI). CSI baseline sum scores were highest in bvFTD (mean ± SD 5.5 ± 3.4, median 5, IQR 6), intermediate in svPPA (2.9 ± 2.3; 3; 3.5) and low in nfvPPA (1.6 ± 2.1; 1; 2). Similar differences of caregiver burden were found using the ZBI. During follow-up, CSI and ZBI sum scores deteriorated in svPPA, not in bvFTD and nfvPPA, and correlated significantly with personality and behaviour, neuropsychiatric symptoms, caregiver age, and instrumental, but not basic activities of daily living, Mini-Mental State Examination scores or frontal lobe functions. This study reveals differences in caregiver burden in variants of frontotemporal lobar degeneration. Caregivers should be systematically asked for caregiver burden from the time of the diagnosis to provide comprehensive support in time.

Burden of Spinal Muscular Atrophy (SMA) on Patients and Caregivers in Canada.

Background:Spinal muscular atrophy (SMA) is a rare neurodegenerative disease characterized by progressive muscular weakness, which occurs in one in 6,000 to 10,000 live births. The burden of SMA on Canadian patients and caregivers is not known.Objective:To characterize the burden of SMA in Canada as reported by patients and caregivers, including disease and treatment impacts, indirect costs, and caregiver burden.Methods:Surveys were distributed by Cure SMA Canada and Muscular Dystrophy Canada to individuals with SMA and their caregivers. The online surveys were anonymous and completed between January 28 and February 21, 2020.Results:965 patient and 962 caregiver responses met the eligibility criteria. Patients reported SMA subtypes as: type I (25.0%), type II (41.3%), type III (29.3%). Using the EQ-5D, patients were shown to have impaired quality of life with an average health utility index of 0.49 (SD: 0.26). The median expenditure was $4,500 CAD (IQR: $1,587 – $11,000) for assistive devices; $6,800 CAD (IQR: $3,900–$13,000) on health professional services; and $1,200 CAD (IQR: $600 –$3,100) on SMA-related travel and accommodation in the past 12 months. Caregivers reported needing respite care (45.7%), physiotherapy for an injury from a lift/transfer (45.7%), or other health impacts (63.3%). Caregivers reported changes to personal plans, sleep disturbances, and work adjustments, with a mean Caregiver Strain Index score of 7.5 [SD: 3.3].Conclusion:SMA in Canada is associated with a significant burden for patients and their caregivers.

Effect of Reiki on the stress level of caregivers of patients with cancer: Qualitative and single-blind randomized controlled trial

ObjectiveThis study aimed to evaluate the effect of Reiki on stress levels of individuals caring for patients with cancer. MethodsThe study was conducted a pretest–posttest, single-blind randomized controlled trial and qualitative study using a semi-structured in-depth interview. In this study, women who were primary caregivers of patients with cancer treated in a university hospital were randomized to Reiki and sham Reiki groups. The Reiki group received Reiki to nine main points for 45 min, once a week for 6 weeks, while the sham Reiki group received the same points during the same period without starting energy flow. CSI scores and salivary cortisol levels were evaluated at baseline and at the end of the study, whereas systolic and diastolic blood pressure and pulse rate were evaluated before and after application every week. After the study, the opinions of the Reiki group on Reiki experience were collected by using a questionnaire consisting of semi-structured questions. ResultsThe study was completed with a total of 42 caregivers. The sample size was calculated based on the difference in Caregiver Strain Index (CSI) scores before and after the intervention. According to the power analysis, with α = 0.05 and β = 0.20, the effect size was 1.71 and the power 99 %. Post-intervention CSI scores declined in the Reiki group compared with that in the sham Reiki group (p < 0.05). No significant difference was found between the groups in terms of saliva cortisol levels (p > 0.05). According to the results of the general linear model repeated measure and Friedman tests, which were conducted to evaluate the change in systolic and diastolic blood pressure and pulse rate over a 6-week period, the values of these parameters decreased before and after each application compared with the caregivers in the sham Reiki group (p < 0.05). All caregivers stated that they found the caring process less stressful after the Reiki sessions and felt relieved compared with the pre-therapy period, and some of their physical complaints decreased. ConclusionReiki reduces the stress levels of caregivers, is effective in regulating blood pressure and pulse rate, does not cause a significant change on saliva cortisol level, and provides relief to caregivers.

A Pilot Study of a Comprehensive Financial Navigation Program in Patients With Cancer and Caregivers.

Few studies have engaged patients and caregivers in interventions to alleviate financial hardship. We collaborated with Consumer Education and Training Services (CENTS), Patient Advocate Foundation (PAF), and Family Reach (FR) to assess the feasibility of enrolling patient-caregiver dyads in a program that provides financial counseling, insurance navigation, and assistance with medical and cost of living expenses. Patients with solid tumors aged ≥18 years and their primary caregiver received a financial education video, monthly contact with a CENTS counselor and PAF case manager for 6 months, and referral to FR for help with unpaid cost of living bills (eg, transportation or housing). Patient financial hardship and caregiver burden were measured using the Comprehensive Score for Financial Toxicity-Patient-Reported Outcomes (COST-PRO) and Caregiver Strain Index (CSI) measures, respectively, at baseline and follow-up. Thirty patients (median age, 59.5 years; 40% commercially insured) and 18 caregivers (67% spouses) consented (78% dyad participation rate). Many participants faced cancer-related financial hardships prior to enrollment, such as work change or loss (45% of patients; 39% of caregivers) and debt (64% of patients); 39% of caregivers reported high levels of financial burden at enrollment. Subjects received $11,000 in assistance (mean, $772 per household); 66% of subjects with income ≤$50,000 received cost-of-living assistance. COST-PRO and CSI scores did not change significantly. Patient-caregiver dyads were willing to participate in a financial navigation program that addresses various financial issues, particularly cost of living expenses in lower income participants. Future work should address financial concerns at diagnosis and determine whether doing so improves patient and caregiver outcomes.

Caregiver strain on informal caregivers when providing care for older patients undergoing major abdominal surgery: a longitudinal prospective cohort study

BackgroundHealth-care systems nowadays rely on complementary patient care by informal caregivers. The need for, and burden on, informal caregivers will likely increase in the upcoming years. This study aimed to examine the burden on caregivers when providing care for elderly patients undergoing major abdominal surgery.MethodsA single-centre longitudinal cohort study was conducted between November 2015 and June 2018 in the Amphia hospital in Breda, the Netherlands. Patients aged 70+ undergoing elective surgery for colorectal carcinoma (CRC) or an abdominal aortic aneurysm (AAA) were included in this study. Informal caregiver burden was assessed and compared over time using the Caregiver Strain Index (CSI) at the outpatient clinic visit, at discharge, 2 weeks post-discharge and after 6 and 12 months. The effects of patient- and caregiver-related factors on the experienced caregiver strain were examined.ResultsCSI scores of 248 caregivers were significantly increased at discharge (3.5 vs 2.6; p < 0.001) and 2 weeks post-discharge (3.3 vs 2.6; p < 0.001). After 12 months, scores dropped below baseline scores (1.8 vs 2.6; p = 0.012). The highest strain was observed 2 weeks post-discharge for AAA patients and at discharge for CRC patients. Older age, physical or cognitive impairment and burden of comorbidity were associated with an increased caregiver strain at baseline. Type of surgery was independently associated with the change in mean CSI scores over time; a bigger change in caregiver burden is observed after open surgery.ConclusionIn the early postoperative period, perceived caregiver strain was significantly increased. Psychological support for caregivers may be advisable, with timing of this support depending on diagnosis and patient-related factors.Trial registrationThis manuscript was retrospectively registered on 05-04-2016 in the Netherlands Trial Register (NTR5932). http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=5932

Surviving a stroke in South Africa: outcomes of home-based care in a low-resource rural setting

ABSTRACTBackground: Little is known of stroke outcomes in low- and middle-income countries with limited formal stroke rehabilitation services and of homebased-stroke services delivered within the primary health care (PHC) context by community health workers (CHWs).Objectives: To describe and analyze the outcomes of patients with stroke from a rural PHC setting in the Western Cape, South Africa.Methods: In a longitudinal survey, 93 stroke patients, referred to home and community-based care services (HCBC) between June 2015 and December 2017, were assessed at baseline, one month and three months. Changes in function (Barthel Index (BI)), caregiver strain (Caregiver Strain Index (CSI)), impact of environmental factors and satisfaction with stroke care were measured.Results: HCBC was delayed, fragmented and brief (median session duration 20 minutes (IQR 15.0–30.0)). Although function improved significantly, dependence remained high: median BI score changed from 40.0 (IQR 15.0–70.0) to 62.5 (IQR 30.0–81.25) (p = .019). A third (33.0% (30/91)) of caregivers initially experienced strain and the median CSI score remained 3.0 (IQR 0.0–7.0) (p = .672). Overall, patient and caregiver satisfaction with HCBC was low with only 46.9% (31/66) of caregivers and 17.4% (12/69) of patients satisfied with all aspects of care. Only 47.6% of assistive product needs were met. Environmental factors negatively impacted on patient function and caregiving.Conclusions: Clinical practice pathways and referral guidelines should be developed for the HCBC platform. Specific training of CHWs, focusing on how to educate, support and train family caregivers, provide assistive devices and refer to health services is needed.

Measuring burden in caregivers of people with multiple sclerosis: psychometric properties of the CSI questionnaire.

BackgroundUnderstanding caregiver strain may be crucial to determine which interventions are most needed to mitigate the negative impact of caring for people with multiple sclerosis (MS). The Caregiver Strain Index (CSI) is a brief self-assessment tool for measuring the caregivers’ perceived level of burden. Limited information is available on the psychometric performance of the CSI in MS.ObjectiveThe objective of this study was to assess the factor structure and construct validity of the CSI in MS.MethodsA multicenter, cross-sectional study in adults with relapsing-remitting and primary-progressive MS (McDonald 2010 criteria) was conducted. A non-parametric item response theory (IRT) procedure, Mokken analysis, was conducted to assess the dimensional structure of the CSI. A parametric IRT model for dichotomous responses, Rasch model, was conducted to assess item characteristics. Discriminative validity was assessed comparing the distribution of its overall score between people with mild and moderate-severe disability according to the Expanded Disability Status Scale.ResultsA total of 72 MS caregivers were studied. The prevalence of a high level of strain was 23.6% (n=17). Internal reliability was high (Cronbach’s alpha =0.91). According to Mokken analysis, CSI represented a unidimensional construct of caregiver burden although two of the total 13 items (#1 and #13) could not be assigned to any factor by an automatic item selection procedure. Without these items, the scalability moved from a weak (Hi =0.37) to a medium scale (Hi =0.44). However, the item characteristic curve of the Rasch model showed a range of appropriate difficulty and the item and person parameters showed good fit (Andersen likelihood ratio test =18.40, df =11; P-value =0.07; all item values for the infit). The CSI score showed a good discriminative validity between the levels of disability of the care recipient.ConclusionThe CSI questionnaire shows appropriate psychometric characteristics being a useful instrument to assess different aspects of burden in MS caregivers in clinical practice.

Association between burden and depression in caregivers of dementia patients

Aim: The pilot study aimed to determine the association between burden and depression in caregivers caring for dementia patients. Design: Quantitative research; a cross-sectional study. Methods: Data were collected using a set of standardized questionnaires. Patients' performance in activities of daily living was assessed using the Barthel scale. The subset for caregivers included the Zarit Burden Interview, Caregiver Strain Index and Beck Depression Inventory. Results: The pilot study sample comprised 100 lay caregivers of dementia patients. More than 50% of caregivers of patients with moderate to severe dementia experienced moderate to severe burden as compared with those caring for individuals with mild or minimal depression. The median burden scores were 54 and 38 in caregivers with and without depression, respectively. There was no statistically significant difference in burden scores with respect to depression. There were positive correlations between depression measured with the Beck Depression Inventory and both Zarit Burden Interview scores (0.4898) and Caregiver Strain Index scores (0.3379). Conclusion: The pilot study results confirm that caregivers are at risk for the development of depression associated with burden of care for dementia patients. It is essential to pay attention to carers, testing them regularly to assess both caregiver burden and the development of depression.

Caregiver burden after stroke: changes over time?

Introduction and aim: Many caregivers of stroke patients experience a high burden. This study aims to describe the course of burden in individual caregivers in the first year after stroke.Methods: This study is part of the Stroke Cohort Outcomes of REhabilitation study, a multicentre, longitudinal cohort study including consecutive stroke patients admitted to two rehabilitation facilities. Caregivers were asked to complete the Caregiver Strain Index and questions on their sociodemographic characteristics 6 and 12 months post admission. Patients’ sociodemographic and clinical characteristics were extracted from medical records.Results: A total of 129 caregivers were included, 72 completed the Caregiver Strain Index twice. Of them, 19 (26.4%) were men, median age 59 (range 27–78) years. A consistently high or low burden was reported by 15 (20.8%) and 49 (68.1%), respectively, whereas 8 (11.1%) reported a high burden at either 6 (n = 3) or 12 months (n = 5).Discussion: In the majority of caregivers of stroke patients the perceived caregiver burden is consistent over time. However, as in 11.1% caregiver burden changes from 6 to 12 months, caregiver burden should be measured repeatedly until 12 months after stroke. Caregivers living together with a patient who suffered a haemorrhagic stroke seem to be more at risk for a high burden.Implications for rehabilitationMany caregivers of stroke patients experience a high burden.The Caregiver Strain Index score at 6 months is a good predictor for the score at 12 months.In some caregivers the high burden is not yet present at 6 months, therefore monitoring caregiver burden throughout the first year after stroke seems warranted.Caregivers living together with a patient who suffered a haemorrhagic stroke seem to be more at risk for a high burden.

Caregiver Burden for Patients With Severe Osteoarthritis Significantly Decreases by One Year After Total Knee Arthroplasty

BackgroundThe impact of total knee arthroplasty (TKA) on patients’ informal caregivers (eg, family members, friends) has gone largely ignored. The goals of this study are to measure the impact of TKA on the caregiver and identify factors contributing to higher burden. MethodsOne hundred fifty primary TKA patients and their designated caregivers were prospectively enrolled. The Caregiver Strain Index (CSI) was completed by caregivers preoperatively, at 4 weeks, and at 1 year after surgery. Additional outcomes included the Knee injury and Osteoarthritis Outcome Score for patients only and the Veterans Rand 12 Item Health Survey for both patients and caregivers. Univariate analysis and multivariate regression modeling were performed. ResultsMean CSI scores at 1 year were significantly lower than preoperative values (P < .01), where lower scores indicate better results. Higher mean CSI values for younger caregivers were identified preoperatively (r = −0.21, P < .01) and at 4 weeks (r = −0.26, P < .01). There were higher mean CSI values for employed caregivers preoperatively (P = .01) and at 4 weeks (P < .01). A negative correlation was identified between CSI and the caregiver’s Veterans Rand 12 Item Health Survey Mental Component Score preoperatively (r = −0.15, P = .03) and at 4 weeks (r = −1.5, P = .03). ConclusionCaregiver burden nearly doubled in the early postoperative period, which was related to several caregiver and patient factors. However, the burden was close to zero by 1 year postoperatively. Thus, TKA is a beneficial intervention for both patient and caregiver.

Quality of life, burden and satisfaction with care in caregivers of patients with a spinal cord injury during and after rehabilitation.

Longitudinal, prospective cohort study. To examine the course that burden, quality of life (QoL) and satisfaction with care taken in Dutch caregivers of patients with a SCI. Adelante Rehabilitation Centre and Dutch community, the Netherlands METHODS: Caregiver Strain index (CSI), Short Form36 (SF-36) and Caregivers' Satisfaction with (Stroke) Care Questionnaire (C-SASC) were administered to caregivers (n = 37) of patients with a recently acquired SCI at the start of rehabilitation (T1), discharge from rehabilitation (T2) and at 8 weeks (T3), 6 months (T4) and 18 months after discharge (T5). During rehabilitation, 20 caregivers (54%) experienced high levels of burden (cutoff >6). CSI scores significantly decreased during follow-up (median CSI score T1:7 IQR[5,10], T5:4 IQR[1,7], p = 0.010), at T5 5 caregivers (24%) scored >6 on burden. Initial low scores on QoL improved significantly in the SF-36 domains 'social-functioning', 'emotional-role-functioning', 'mental health' and 'vitality'. Overall satisfaction with care of caregivers was good (C-SASC: median 3, IQR[3,4]) and stable over time. Moderate strongly negative correlations were found between total CSI-score and 'social-functioning' (T2-T3-T4), 'emotional-role-functioning' (all time points), 'mental health' (all time points) and 'vitality' (all time points) with p values < 0.041. This study demonstrates the high burden and a low QoL on the 'the Mental Health Component' domains (or MHC) of caregivers during inpatient rehabilitation. During the early home phase, we found a significant improvement in burden and MHC. Clinicians working with both SCI-patients and caregivers should be aware of the possible high burden and low QoL of caregivers during rehabilitation.

Correlates of Positive Aspects of Caregiving Among Family Caregivers of Patients with Acute Myeloblastic Leukaemia.

To evaluate the positive aspects of caregiving and its sociodemographic and clinical correlates in family caregivers of patients with Acute Myeloblastic Leukaemia (AML). A total of 30 caregivers of the patients with AML were evaluated on the Scale for Positive Aspects of Caregiving Experience (SPACE), Family Burden Interview (FBI) and Schedule and Caregiver Strain Index (CSI). On the SPACE, the mean score was highest for the domain of motivation for the caregiving role, followed by the domain of 'caregiving personal gains', 'caregiver satisfaction' and least score was seen in the domain of 'self-esteem and social aspect of caring'. All the SPACE domains were negatively correlated with financial burden, disruption of routine family activities, disruption of family interaction, physical health and subjective burden domains of FBI. Effect on physical health of others domain of FBI correlated negatively with all domains of SPACE except 'self esteem and social aspect of caregiving'. FBI total objective burden was negatively correlated with motivation for caregiving role, caregiver satisfaction and total SPACE score. All SPACE domains were negatively correlated with adaptation and inconvenience domains and total CSI score. Lower level of positive caregiving experience is reported by caregivers who experience high level of caregiver burden.

Improved health-related quality of life, participation, and autonomy in patients with treatment-resistant chronic pain after an intensive social cognitive intervention with the participation of support partners.

Despite the availability of various specific treatments, most patients with chronic pain (CP) consider their pain problem as undertreated. Recently, multiple sclerosis (MS) patients who were given an intensive 3-day social cognitive treatment with the participation of support partners experienced lasting improvements in health-related quality of life (HRQoL) and self-efficacy. In this study, a similar intervention was given to treatment-resistant CP patients with stressors, relational problems with support partner, and distress, anxiety or depression. Before and 1, 3, and 6 months after the intervention, patients completed the Euro-Qol 5 Dimensions 5 Levels (EQ-5D-5L) and Impact on Participation and Autonomy (IPA) questionnaires (primary outcomes), and the Survey Of Pain Attitudes (SOPA), the Four-Dimensional Symptom Questionnaire (4DSQ) (distress, depression, anxiety, and somatization), and Visual Analog Scale for pain intensity, whereas the support partners completed the Caregiver Strain Index (CSI) questionnaire. Differences between baseline and post-treatment were tested via paired t-tests (significance level 0.05). Of the 39 patients who were included, 34 (87.2%) completed the 3-day treatment. At 1, 3, and 6 months, improvements were seen in EQ-5D-5L-Index (+40.6%; +22.4%; +31.7%), Health Today (+61.8%; +36.3%; +46.8%), Control attitude (+45.8%; not significant [NS]; +55.0%) and decreases in IPA-Problems (−14.8%; NS; −20.4%), Harm attitude (−18.9%; −15.0%; −17.7%), Distress (−17.7%; −31.8%; −37.1%), and Depression (−37.4%; −31.4%; −35.7%) scores. The CSI score had decreased by −29.0%, −21.4%, and −25.9%, respectively. In conclusion, after an intensive 3-day social cognitive intervention, treatment-resistant CP patients experienced substantial and lasting improvements in HRQoL and in problematic limitations to participation and autonomy, in association with improvements in pain attitudes, depression, and distress. To assess whether this innovative approach may be an effective treatment for this subgroup of CP patients, future randomized controlled studies are needed.

Are Disagreements in Caregiver and Patient Assessment of Patient Health Associated with Increased Caregiver Burden in Caregivers of Older Adults with Cancer?

As patients age, caregivers increasingly provide essential support and patient information. We sought to determine if patient-caregiver assessments of patient health differ and if differences contribute to burden in caregivers of older adults with cancer. One hundred patients, aged ≥65, and their caregivers independently assessed patient function, comorbidity, nutrition, social activity, social support, and mental health. Caregivers completed the Caregiver Strain Index (CSI). Patient-caregiver assessments were compared using the Wilcoxon signed rank test and paired t test. Association between caregiver burden and differences between patient-caregiver assessments was examined using generalized linear regression. Median patient age was 70 (range 65-91) and 70% had advanced disease. Sixty percent of patients reported requiring help with instrumental activities of daily living (IADLs); most had good social support (median Medical Outcomes Study [MOS]-Social Support Survey score 92) and mental health (median Mental Health Inventory score 85).Caregivers were a median age of 66 (range 28-85), 73% female, 68% spousal caregivers, and 79% lived with the patient. Caregivers rated patients as having poorer physical function (more IADLs dependency [p = .008], lower Karnofsky Performance Status [p = .02], lower MOS-Physical Function [p < .0001]), poorer mental health (p = .0002), and having more social support (p = .03) than patients themselves. Three-quarters of caregivers experienced some caregiver burden (mean CSI score 3.1). Only differences in patient-caregiver assessment of the patient's need for help with IADLs were associated with increased caregiver burden (p = .03). Patient-caregiver assessments of patient function, mental health, and social support differ. However, only differences in assessment of IADLs dependency were associated with increased caregiver burden. As patients age, there is a higher incidence of frailty and cognitive impairments. As a result, caregivers play an increasingly vital role in providing information about patient health to healthcare providers, which is used to help healthcare providers tailor treatments and optimize patient health. These findings highlight that caregiver reporting in older adults with cancer may not replace patient reporting in those older adults who are otherwise able to self-report. Furthermore, clinicians should check for caregiver burden in caregivers who report providing more help with instrumental activities of daily living than patients themselves report and provide appropriate support as needed.

Caregiver strain and posttraumatic stress symptoms of informal caregivers of intensive care unit survivors.

Many intensive care unit survivors (ICU) are confronted with undesirable and long-lasting impairments in physical, cognitive, and mental health, but not only patients are at risk of developing this post-intensive care syndrome (PICS). Family members can experience symptoms of depression, anxiety, and posttraumatic stress disorder (PTSD). This cluster of complications is called PICS-family. To describe the level of caregiver strain and posttraumatic stress-related symptoms in relatives of ICU survivors. We conducted a cohort study in a general hospital between July 2010 and May 2014. Relatives of ICU survivors, mechanically ventilated for > 48 h in the ICU, were asked to complete a questionnaire 3 months after discharge from critical care. Symptoms of PTSD and caregiving concerns were assessed using the Trauma Screening Questionnaire and the Caregiver Strain Index (CSI). A total of 94 relatives visiting our post-ICU clinic completed the questionnaires. Twenty-one percent of the caregivers had a CSI score of 7 or more, indicating high levels of strain. Six percent had CSI scores indicating severe strain (CSI > 10). PTSD-related symptoms were seen in 21% of the caregivers. The mean time spent on caregiving was 10 h (interquartile range 6-17 h) per week. This study shows that relatives of ICU survivors could experience strain 3 months after hospital discharge and are at risk of developing PTSD-related symptoms. This complements existing data that relatives are at risk of psychological symptoms. Knowledge can lead to improvements and means to prevent these symptoms. (PsycINFO Database Record

The Effects of a Patient-Caregiver Education and Follow-Up Program on the Breast Cancer Caregiver Strain Index.

Background:In recent years, the caregiving responsibilities of cancer patients’ family members have increased dramatically. Reducing caregiver strain and burden supports the mission of professional nursing.Objectives:The aim of this study was to determine and compare the caregiver strain index scores of breast cancer informal caregivers, before and after a patient-caregiver educational and telephone follow-up program.Patients and Methods:This is an experimental two-group design study. Participants were recruited from an outpatient chemotherapy unit of the largest hematology and oncology research center in Northwest Iran. Thirty patient-caregiver pairs were randomly allocated to intervention and control groups. The intervention group received 2 face-to-face education sessions at bedside and 4 subsequent telephone follow-up sessions. The control group received routine care. Pre and post tests were administered in both groups pre and post intervention. To analyze the data, SPSS (13th version) software was used.Results:The caregiver strain index decreased significantly in the intervention group after the patient-caregiver education and follow-up (P < 0.001), while the control group’s scores did not change (P = 0.04).Conclusions:It appears that the patient-caregiver education and follow-up program had a beneficial effect on the caregiver strain index compared to the usual care.

Higher Levels of Caregiver Strain Perceived by Indian Mothers of Children and Young Adults with Cerebral Palsy Who have Limited Self-Mobility

ABSTRACTAim: Describe and compare the caregiver strain experienced among Indian mothers of children and young adults with cerebral palsy (CP) living in low resource settings. Methods: 62 consecutive children and young adults with spastic CP (mean age 6.0 ± 4.5, range 2–21) and their parents were recruited from an outpatient physiotherapy department for this cross-sectional study. Ability to walk was classified using the Gross Motor Function Classification System and mother's caregiver strain was measured using caregiver strain index (CSI). Results: Mothers of children and young adults who have limited self-mobility perceived higher caregiver strain (mean CSI score 12.0 ± 1.3, p < 0.05) than mothers of children who can walk (mean CSI score 4.5 ± 3.0, p < 0.05). All 46 mothers of children and youth in GMFCS levels IV and V reported high levels of caregiver stress compared with only three of 16 mothers of children and youth who walk (levels I and II). Conclusions: Physiotherapists and occupational therapists serving children and youth with CP are encouraged to partner with families to identify goals for ease of caregiving, activity, and participation at home and in the community.

Caring for a child with Cerebral Palsy: The experience of Zimbabwean mothers.

BackgroundThe needs of caregivers of children with disability may not be recognized despite evidence to suggest that they experience increased strain because of their care-giving role. This strain may be exacerbated if they live in under-resourced areas.ObjectivesWe set out to establish the well-being of caregivers of children with Cerebral Palsy (CP) living in high-density areas of Harare, Zimbabwe. In addition, we wished to identify factors that might be predictive of caregivers’ well-being. Finally, we examined the psychometric properties of the Caregiver Strain Index (CSI) within the context of the study.MethodCaregivers of 46 children with CP were assessed twice, at baseline, and after three months, for perceived burden of care and health-related quality of life (HRQoL) using CSI and EQ-5D respectively. The psychometric properties of the CSI were assessed post hoc.ResultsThe caregivers reported considerable caregiver burden with half of the caregivers reporting CSI scores in the ‘clinical distress’ range. Many of the caregivers experienced some form of pain, depression and expressed that they were overwhelmed by the care-giving role. No variable was found to be associated with clinical distress. The CSI demonstrated good overall internal consistency (Cronbach's Alpha = 0.8), stability over time (Z = 0.87, p = 0.381) and was significantly and negatively correlated with the EQ-5D VAS (Spearman's rho = −0.33, p = 0.027), demonstrating concurrent validity.ConclusionCaregivers must be monitored routinely for their level of distress and there is an urgent need to provide them with support. The CSI is likely to be a valid measure of distress in this population.