Exploring the effectiveness of an Internet-based program for reducing caregiver distress using the iCare Stress Management e-Training Program

64 Background: Improving symptom control during end of life (EOL) is a core goal of palliative care. When patients are not able to report their symptoms, caregivers (CG) report symptom intensity as surrogates. Data show that there is good agreement between patients and CG in reporting symptom intensity. However, little is known about factores that influence CGs’ accuracy. The aim of the study was to determine CG accuracy of advanced cancer patients’ symptoms and to identify CG factors that could modify it. Methods: In this prospective study, patients with advanced cancer enrolled in the National Program of Palliative Care at a public Hospital in Santiago, Chile and their CGs independently scored ten patients’ symptoms using the Edmonton Symptom Assessment Scale (ESAS). Correlation between patient and CG scores were estimated for each symptom. Differences between patient and CG scores were calculated for each symptom and were transformed into positive values. A continuous variable was created with the sum of all the differences as an indicator of caregiver overall accuracy, with smaller scores meaning better accuracy. CG depression, anxiety (HADS) and burden (ZARIT) were also assessed. Results: 36 patients and their CG were included in this preliminary analysis. Mean patient age was 64, 20 (56%) females, 13 (36%) had GI cancer, 7 (19%) lung cancer and 16 (45%) other. Mean caregiver age was 53, 25 (69%) female. We found positive correlations between patients’ and caregivers’ assessment of pain, fatigue, nausea, anorexia, dyspnea, depression and insomnia (r > 0.3 and p < .05 for each symptom). CG accuracy ranged between 10 and 44 points (mean 25, standard deviation 9) and was not associated with CG age, gender, depression, anxiety or burden. CG accuracy was negatively associated with CG worrying thoughts as assessed by one of the HADS questions (Coef -3.99, p = .015), meaning that CG were more accurate when their worrying thoughts were higher. This association remained significant when adjusted by CG depression, anxiety and burden. Conclusions: CG are more accurate in reporting patient symptoms when their levels of worrying thoughts are higher. This information may have implications in interpreting CG report during EOL.

Background: Brief family interventions may have a positive impact on family caregivers of mental disorders. This study aimed to evaluate the effect of family psycho-education on depression, anxiety and stress in family caregivers of patients with mental disorders. Methods: This randomized controlled trial designed and evaluated the effectiveness of a group psycho-educational program on 100 caregivers of mental disorders attending in Noor hospital in Isfahan. The caregiver’s depression, anxiety and stress level was assessed using the DASS scale. The participants followed up for a period of three months. Results: Depression, anxiety and stress level decreased significantly in the psycho-educational group. The mean score of the DASS scale in the intervention group was significantly reduced compared to the control group. Conclusion: Our findings confirmed that group intervention program for reducing depression, anxiety and stress levels in Iranian population was effective and may potentially improve the quality of life of both patients and caregivers.

Caregiving of a dependent elderly is one of the gruelling tasks that develops burden of stress among caregivers. The caregiver stress is an important and negative parameter which is harmful for the primary caregivers. In fact, the burden upon the primary caregivers ultimately changes the perception of quality of life. The overburdening of the tasks viz. household as well as caregiving and that is also without required amount of help leads to poor quality of life of the primary caregivers. The present study was conducted on a sample of 60 primary caregivers from middle socio-economic status families situated in the district of Ludhiana city of Punjab. Zarit Burden Interview developed by Zarit et al. (1980) was used to assess the caregiver stress of the primary caregivers. The quality of life of the respondents was assessed by the World Health Organization Quality of Life-Bref questionnaire which was developed by World Health Organization (1997). The results revealed that a major proportion of the respondents reported to possess a low level of quality of life. Statistically significant association was found between the caregiver stress and the overall quality of life as well as across different domains of quality of life of the primary caregivers.

Introduction Cancer is a disease with a high mortality rate and requires care. The identification of cancer with death may cause patients and caregivers not to talk about illness and death. However, communication is one of the most important elements of this disease process. In addition to the inability to talk, the increased responsibilities of caregivers cause physical, economic, social and psychological burdens on caregivers. This can lead to high levels of stress, mental fatigue and depression in caregivers. Poor communication between patients and caregivers is an important factor related to depressive symptoms in caregivers during the caregiving process. Open communication between caregivers and the patient is a factor that can positively affect the disease process. With this study, it can be found that being open communication can reduce depression, anxiety and stress levels in caregivers and support studies to reduce the burden of care of caregivers. Thus, it can be ensured that patients and their caregivers experience the disease process more positively and spend it more positively. Objectives Existing measures of mortality communication may not capture much of the nuance in that cancer caregiver report to be particularly upsetting, so we thought it would be important to examine reliability and validity of the Caregiver’s Communication with the Patient about Illness and Death (CCID) Scale for measuring the extent to which caregivers of cancer patients discuss illness and death with the patientin Turkey. Methods The methodological study will be conducted to establish the validity and reliability of the Caregiver’s Communication with the Patient about Illness and Death (CCID) Scaleto Turkish Culture and to determine the level of mortality communication, expected grief, care burden and mental health problems among cancer caregiver in Eastern Turkey. The sample of the study will consist of cancer caregivers and who agree to participate in the study. The data will be subjected to appropriate methods for statistical analysis and will be used to understand the relationships between mortality communication and grief, depression, anxiety, stress and caregiver burden at caregivers of cancer patients. Results Data extraction is still on going in detailed style by principal authors. Description of studies and the key findings will be presented. Conclusions It is predicted that not discussing illness and death causes an increase in depression, anxiety and stress levels in caregivers. In this study, it is aimed to evaluate depression, anxiety and stress in caregivers of cancer patients who will be evaluated with the scale and to evaluate their relationship with care burden. Disclosure of Interest None Declared

In Malawi, Primary Caregivers (PCGs) of children living with Cerebral Palsy report challenges such as physical strain and lack of resources that affect care giving. Although such experiences affect the PCGs' Quality of Life (QoL), there is paucity of data for Malawi. Understanding their QoL would inform establishment of holistic intervention(s) tailored to meet their needs. Therefore, the purposes of this study were to determine QoL of PCGs of the children who were receiving rehabilitation at Queen Elizabeth Central Hospital (QECH) and Feed the Children (FtC), to identify PCG's and children's socio-demographic factors that may attribute to the perceived QoL, and to compare the PCGs' QoL between the sites. A cross-sectional study was conducted from January to April 2019 on 142 PCGs of children aged between 2 and 18 years of age. All PCGs who were employed for the child-care, or had a chronic sickness were excluded. QoL was assessed using the World Health Organization Brief questionnaire, with a cut-off point of <60% for poor QoL. The severity of children's impairments was assessed using Gross Motor Function Classification System. Descriptive and inferential statistics were conducted to analyze the data. The PCGs' age, sex, marital status and level of education, and child's severity of impairment were compared with QoL. The majority of PCGs (61.30%) had poor QoL, and there was no significant difference in overall QoL of the PCGs between the sites (p<0.31). The PCGs at QECH had significantly higher physical domain mean scores than at FtC (U=1906, p<0.01). The overall QoL differed significantly across the marital statuses of the PCGs (p<0.03). The study has established that most PCGs at both sites possess poor QoL. However, there is need to investigate how the rehabilitation institutions and workers influence the QoL of the PCGs within and between the facilities.

Objective To explore the effects of caregiver burden and quality of life in major caregivers of patients with type 2 diabetes and to discuss the correlation between the two, so as to provide a basis for intervening with quality of life in patients with type 2 diabetes and their major caregivers. Methods Totally 138 major caregivers of diabetes mellitus (DM) patients admitted in the Department of Endocrinology, Shangqiu First People's Hospital from March 2017 to August 2018 were selected by convenient sampling, and investigated with the general information questionnaire, the Family Burden Scale of Disease (FBS) and 36-item Short Form Health Survey (SF-36) . Results The caregiver burden score of the major caregivers of patients with type 2 diabetes was (14.56±7.96) ; the quality of life score was (67.57±19.83) ; and caregiver burden was negatively correlated with quality of life (r=-0.391, P<0.05) . Conclusions The overall caregiver burden in major caregivers of patients with type 2 diabetes remain at a medium level and their quality of life is low. The heavier the caregiver burden in major caregiver of patients with type 2 diabetes, the poorer their quality of life is. Targeted measures should be taken for family caregivers of DM patients to reduce their caregiver burden and improve their quality of life. Key words: Diabetes, type 2; Quality of life; Caregivers; Caregiver burden; Correlation

Objective: To evaluate whether a blended (face-to-face and online) psychosocial support program for caregivers of patients with Amyotrophic Lateral Sclerosis (ALS) and Progressive Muscular Atrophy (PMA), aimed at enhancing feeling of control over caregiving, reduces psychological distress. Methods: A randomized controlled trial using a wait-list control design was conducted. Caregiver-patient dyads were randomly assigned to either the support program (n = 74) or to a wait-list control group (n = 74). The support program, based on Acceptance and Commitment Therapy, consists of 1 face-to-face contact, 6 online guided modules and 1 telephone contact. Participants filled in questionnaires at baseline, 3 and 6 months. Caregivers’ feeling of control over caregiving was assessed using two self-efficacy measures. Primary outcome was caregivers’ psychological distress. Secondary outcomes included caregiver burden, caregiver quality of life and patients’ quality of life and psychological distress. Intention-to-treat and per-protocol analyses were performed using linear mixed models. Results: The support program had no effect on the primary or secondary outcomes, despite a significant positive effect on the intervening variable self-efficacy with regard to control over thoughts. Almost half of the caregivers did not complete the intervention with the most frequently reported reason being lack of time. Caregivers who completed the intervention evaluated the support program positively. Conclusions: The support program did not reduce distress of partners of patients with ALS/PMA but may be beneficial by increasing feeling of control over the caregiving situation. The high level of intervention drop outs may have limited the ability to detect an intervention effect.Trial registration: Netherlands Trial Registry NTR5734, registered 28 March 2016.

Introduction: Caregivers (CGs) of heart failure (HF) patients (PTs) who undergo heart transplantation (HT) or Destination Therapy Mechanical Circulatory Support (DT MCS) provide support to PTs before and after surgery, which may affect their own health-related quality of life (HRQOL). In SUSTAIN-IT, we previously reported that CG HRQOL was good at baseline (i.e., before HT and DT MCS surgery) and was impacted by CG comorbidities and CG anxiety. This report explores change in CG overall HRQOL, depression, and anxiety from baseline to 12 months after HT or DT MCS surgery. Methods: From 10/1/15-12/31/18, 13 U.S. centers enrolled 301 CGs of HF PTs: 193 awaiting HT (92 HT with MCS as a bridge to transplant [HT BTT] and 101 HT without MCS [HT non-BTT]), and 108 awaiting DT MCS. At baseline, 3, 6, and 12 months post HT or DT MCS surgery, CGs completed the following instruments: EQ-5D-3L (Visual Analog Scale [VAS]: 0 [worst] to 100 [best] imaginable health state), PHQ-8 (range=0-24; score ≥10=depressive symptoms requiring evaluation), and STAI-State (range=20-80, higher score=more anxiety). Analyses included unadjusted and baseline-adjusted linear regression models. Results: CGs were age 61.0±10.3 years; the majority were Caucasian (86%), female (86%), spouses (85%) of enrolled HF PTs. At baseline, CG EQ-5D-3L VAS and PHQ-8 average scores were 83.8 ± 13.99 (high) and 2.6 ± 2.85 (low), respectively, for the entire cohort. No significant interval changes in CG HRQOL and depressive symptoms were found within or between groups. DT MCS and HT non-BTT CG anxiety significantly decreased over time (baseline to 12 months) (Figure). Levels of CG anxiety were similar among all groups at 12 months after HT or DT MCS surgery. Conclusions: The demonstrated reduction in anxiety among CGs in the post-operative period provides clinicians with important information to share with CGs when PTs are considering surgical treatment options for HF.

The aim of this study was to examine the efficacy of a collaborative care intervention in reducing depression, pain, and fatigue and improve quality of life. A total of 261 patients with advanced cancer and 179 family caregivers were randomized to a web-based collaborative care intervention or enhanced usual care. The intervention included the following: 1) a web site with written and audiovisual self-management strategies, a bulletin board, and other resources; 2) visits with a care coordinator during a physician's appointment every 2 months; and 3) telephone follow-up every 2 weeks. Primary patient outcomes included measures of depression, pain, fatigue, and health-related quality of life. Secondary outcomes included Interleukin (IL)-1α, IL-1β, IL-6, and IL-8 levels, Natural Killer (NK) cell numbers, and caregiver stress and depression. At the baseline, 51% of the patients reported 1 or more symptoms in the clinical range. For patients who presented with clinical levels of symptoms and were randomized to the intervention, reductions in depression (Cohen's d = 0.71), pain (Cohen's d = 0.62), and fatigue (Cohen's d = 0.26) and improvements in quality of life (Cohen's d = 0.99) were observed when compared to those in the enhanced usual car arm at 6 months. Reductions in IL-6 (φ = 0.18), IL-1β (φ = 0.35), IL-1α (φ = 0.19), and IL-8 (φ = 0.15) and increases in NK cell numbers (φ = 0.23) were observed in comparison with enhanced usual care arm at 6 months. Reductions in caregiver stress (Cohen's d = 0.75) and depression (Cohen's d = 0.37) were observed at 6 months for caregivers whose loved ones were randomized to the intervention arm. The integration of screening and symptom management into cancer care is recommended.

Title: Younger Care Givers of Stroke Survivors Experience Personal Growth through Caregiving Background: Stroke is the leading cause of disability in the US. One in four patients with stroke is disabled. Providing care to these survivors long term is very burdensome to the family. Wellbeing and respite of care givers (CG) has not been studied well in the past. In this study, we focused on quality of life (QOL) of the young care giver (YCG) of stroke survivors. The Retreat and Refresh Stroke Camp (RRSC), initiated in 2004, offers respite, opportunities to develop new relationships, networking, sharing and education/access to resources. Methods: QOL of CG attending the Retreat and Refresh Stroke Camp (RRSC) in 2016 -2017 was assessed using the Adult Carer Quality of Life Questionnaire (ACQOLQ). YCG were defined as 65 years and younger. The ACQOLQ addresses 8 subcategories of QOL. High (11+) subcategory score indicates high QOL in that category, a score (0-5) indicates low QOL and potential difficulties. Emails were sent to all CG with a link to ACQOLQ in Survey Monkey. Results were analyzed using descriptive statistics and unpaired t-test. Results: Seventy four CG responded to the survey. Sixty one percent are YCG (mean 61.2 years), 86.49% female. Approximately 40% YCG provided care &gt;70 hours/week. Mean duration of caring 6.36 years. Mean ACQOLQ score 69.23, indicating mid-range QOL. Seven had a high QOL, 4 had low QOL. Of the eight subcategories, support for caring averaged 7.17; caring choice, 7.43; caring stress, 8.52; money matters, 7.96; personal growth, 8.46; sense of value, 9.61; ability to care, 10.41; and care satisfaction, 9.66. Unpaired t-test, showed higher QOL in personal growth (P&lt;0.05) and more financial concerns (P&lt;0.05) for these YCG. Conclusions: The ACQOLQ provides a benchmark for QOL assessment for the RRSC CG. RRSC may have played a role in improving the self-worth, confidence, feelings of appreciation of CG. RRSC must reach out to populations of higher stroke incidence and families of stroke survivors. Camp Directors will use this information to develop strategies to improve CG freedom, money management, and general support.

IntroductionThe sudden undertaking of being a caregiver for a spouse or family member afflicted with a stroke can cause adverse psychological consequences. In Malaysia, the majority of stroke patients return home to be cared for by family members and continue rehabilitation as outpatients. In most local urban communities, the practice of shared caregiving is observed among stroke caregivers either out of necessity or familism. Sole or primary caregivers who share their homes with stroke patients would be more challenged physically and psychologically compared to secondary or joint caregivers. Sharing the caregiving responsibilities is believed to lighten the burden on primary caregivers. This study aims to determine the proportion and associated factors of depression among urban-dwelling caregivers of home-bound stroke patients receiving long-term care from a university-based primary care clinic.MethodologyA cross-sectional study involving 123 primary and secondary caregivers of stroke patients was conducted at Klinik Primer PPUKM Cheras (KPPC) and the outpatient Medical Rehabilitation Services Department Hospital Canselor Tuanku Muhriz (HCTM), Cheras Kuala Lumpur. A self-administered questionnaire comprising of sociodemographic characteristics, the Beck Depression Inventory-II (BDI-II), and the Multidimensional Scale of Perceived Social Support questionnaire (MSPSS) was used. The functional status of the stroke patients was assessed using the Modified Rankin Score (MRS).ResultsThe proportion of respondents with depression was 20.3% (n=25). Depression was associated with caregivers’ age (CI=42.23-50.09, p=0.016), presence of illness (p=0.001), and being a sole caregiver (p=0.001). There is also an association found between caregiver depression with longer duration post-stroke (CI= 12.75-16.13, p<0.001), longer time spent for caregiving (CI= 117.73-135.87, p=0.004), and more functionally dependant patients (p=0.002).ConclusionDepression affects one in five caregivers of home-bound stroke patients residing in the urban community. The primary care provider should be more vigilant in screening for depression, especially among caregivers who are from older age groups, have ongoing health problems, and are sole caregivers to patients who are functionally dependant.

IntroductionPharmacological interventions to address behavioural and psychological symptoms of dementia (BPSD) can have undesirable side effects, therefore non-pharmacological approaches to managing symptoms may be preferable. Past studies show that music...

IntroductionFamily caregivers play a key role in providing ongoing long-term care and assistance to their loved ones during cancer treatment. However, family caregivers of patients with lung cancer are frequently...

The progressive cognitive, behavioral and social losses experienced by the individual with Alzheimer's disease severely impact the family unit. These losses also influence the duration of home care and contribute to caregiver burden. Most studies lack specific descriptive data on caregiver stressors in home care giving which precipitate institutionalization of the individual with Alzheimer's disease. The purposes of this study were to identify selected caregiver stressors according to the Social Behavior Assessment Schedule (SBAS) and to determine the caregiver stressors precipitating the institutionalization of a family member with Alzheimer's disease. Theoretically, describing and clarifying caregiver burden develops the burden construct and identifies family behavior patterns. Clinically, the study provides direction to nurses in providing anticipatory guidance, direct care interventions, and supportive services to family caregivers. Crisis intervention was used as the theoretical framework. A convenience sample of six primary caregivers participated in this descriptive study. Inclusion criteria included: Having a relative institutionalized with Alzheimer's disease; Being identified as the primary caregiver of the relative prior to the institutionalization; Living in the same household with the relative prior to institutionalization. A retrospective chart review was conducted at a large Midwestern Veteran's Affairs (V.A.) nursing home to identify residents with a diagnosis of Alzheimer's disease. The primary family caregiver was then asked to participate in the study. The study instrument was the SBAS. Inter-rater reliability for the instrument ranges from 0.92-0.99. The SBAS is divided into six sections which measure a patient's disturbed behavior, the patient's social performance, and the adverse effects on the household. Primary family caregivers consented to participate in a semi-structured interview (SBAS) conducted by nurse researchers at the V.A. nursing home. All primary caregivers were female spouses with a mean age of 68.2 years. The care recipients were all men with an average age of 69.54 years. Most care recipients initially had trouble for five to 10 years, but the onset of behaviors which actually precipitated nursing home placement was two years prior to institutionalization. Twelve of the 22 instrument behaviors were descriptive of care recipient behavior. Five behaviors (withdrawal, slowness, indecisiveness, self-neglect, underactivity) were displayed by 100 percent of care recipients. Three other behaviors (odd ideas, misery, forgetfulness) were reported by 83 percent of the caregivers. Obsessionality, odd behavior, unpredictability and irritability were reported by 66 percent of caregivers. Seven behaviors resulted in severe caregiver stress and eight resulted in moderate stress. Over 50 percent of caregivers experienced emotional ill health. Findings indicate that Alzheimer caregivers have multiple stressors for long periods of time which provide opportunities for therapeutic intervention by nurses.

Background: Dementia is one of the major causes of disability and dependency among older people worldwide because itaffects the capacity to remember, ability to think abstractly, language functions, orientation to time and place, appropriate judgement and consequently, personality changes of dementia sufferer. Consequently, dementia sufferer will lose their functional capacity for independence. Under this circumstance,dementia sufferer will require assistance in their daily activities and personal care. Generally, the family members will be the primary caregivers that provide the caregiving role to the dementia sufferer. Therefore, caring for a dependent dementia sufferer may cause the negative effects on physical, psychological, psychosocial, social and financial health of caregivers which can lead stress among the primary caregivers.Objective: The main objective of this study is to measure the stress level among primary caregivers in caring for dementia patient in one of the public hospitals in Kuala Lumpur.Research Method: This is a cross-sectional study. This study will be conducted with apurposive sampling methodwhich is a non-probability sample of primary caregivers, whose caring for dementia patient in one of the public hospitals in Kuala Lumpur. The sample size estimated for this study is 66 of primary caregivers whose is caring for dementia patient. Analysis: Mean and percentage will be used to analyse descriptive data, while Chi-square will be performed for inferential data. Expected outcomes: This study is focus on the stress that the primary caregivers are facing during providing the caregiving of a person with dementia. So, from this study it will be enable the practitioner to not only find ways to help the primary caregivers from the stress of caregiving, but also to measure the effectiveness of interventions that seek to mitigate the stressof caregiving.