The following resources examine outcomes and measuring the impact of care.
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Background The present study investigated the factor structure of positive aspects of caregiving (PAC) scale among primary informal caregivers providing care to persons with dementia (PWD) in Singapore. Methods 282 primary informal caregivers of PWD were recruited from the Institute of Mental Health, and Changi General Hospital and administered the 9-item PAC scale. A confirmatory factor analyses (CFA) was conducted to test the model fit of the 9-item PAC proposed by the scale developer and multiple linear regression was used to investigate the significant socio-demographic correlates. Results CFA showed that the 2-factor structure including ‘Self-Affirmation’ and ‘Outlook on Life’ had an acceptable model fit. After controlling for confounding variables, Malay caregivers were associated with higher scores on PAC and ‘Self-Affirmation’ compared to caregivers of other ethnicities. Caregivers with Secondary or below education level had higher PAC and ‘Outlook on Life’ scores. Caregivers who had received formal training scored higher in PAC, ‘Self-Affirmation’ and ‘Outlook on Life’. Discussion The present study confirmed that the 2-factor structure of the 9-item PAC was suitable for informal caregivers of PWD in Singapore. The findings have important implications for locally available interventions to enhance caregiver’s psychological well-being and reduce burden of care.
Purpose: The Family Burden Interview Schedule (FBIS-24) and the Zarit Caregiver Burden Interview (ZBI-22) are among the most widely used measures for assessing caregiving burden, but their psychometric performances have not been compared in the same study of caregivers of people living with schizophrenia (PLS). This is important because the measures assess overlapping constructs-the FBIS-24 assesses objective burden (e.g., completion of manual tasks) and the ZBI-22 assesses subjective burden (e.g., perceived distress, stigma). This study seeks to fill this gap by comparing the reliability and validity of the FBIS-24 and the ZBI-22 in a Chinese community sample of caregivers of PLS. Methods: A Cross-sectional stud was conducted in a community-based mental health service program in Central South part of China. A total of 327 primary family caregivers of PLS completed face-to-face interviews of the FBIS-24, the ZBI-22, the Patient Health Questionnaire (PHQ-9), the Generalized Anxiety Disorder Scale (GAD-7), and the Family Adaptation, Partnership, Growth, Affection and Resolve Index scale (APGAR), and PLS were assessed using the Global Assessment of Function scale (GAF). Results: Our findings show that both the FBIS-24 and ZBI-22 have comparable psychometric performance in terms of the internal consistency, convergent validity and known group's validity. Conclusion: Both the FBIS-24 and the ZBI-22 are psychometrically sound measures of caregiving burden but the choice of which measure to use will depend on the research question.
Insomnia is a major comorbid symptom of chronic pain and is likely to affect caregiver burden. This cross-sectional study investigated the association between insomnia in chronic pain patients and family caregiver burden. Participants were 60 patients with chronic pain of >= 3 months duration. Demographic and clinical information were collected using the Athens Insomnia Scale (AIS), the Pain Disability Assessment Scale (PDAS), the Hospital Anxiety and Depression Scale (HADS), and a pain intensity numerical rating scale (NRS). Family members who accompanied chronic pain patients to hospital completed the Zarit Burden Interview (ZBI). Univariate regression analysis and multiple regression analysis were conducted to clarify the associations between ZBI scores and total/subscale AIS scores. Covariates were age; sex; pain duration; and scores on the PDAS, HADS anxiety subscale, HADS depression subscale, and NRS. Insomnia was independently associated with ZBI scores [beta: 0.27, 95% confidence interval (CI): 0.07-0.52, p = 0.001]. Scores on the AIS subscale of physical and mental functioning during the day were significantly associated with ZBI scores (beta: 0.32, 95% CI: 0.05-0.59, p = 0.007). In conclusion, the findings suggest that in chronic pain patients, comorbid insomnia and physical and mental daytime functioning is associated with family caregiver burden independently of pain duration, pain-related disability, and pain intensity.
Background: Spirituality can give meaning to life, providing support and guidance in complex situations. Despite its importance in palliative care, the role of spirituality for family caregivers of patients under exclusive palliative care has not received enough attention in the literature. We aimed to address the correlation between spirituality and the emotional burden of family members of patients under exclusive palliative care. Methods: This transversal study was conducted in a tertiary private teaching hospital, in Saõ Paulo, Brazil. The study comprised family members of patients receiving palliative care exclusively. Only one caregiver who cared for the patient for at least 2 months was invited to participate. Family members answered the following questionnaires: WHOQOL spirituality, religiousness and personal beliefs (SRPB), Zarit Burden Interview (ZBI) and Self-Reporting Questionnaire (SRQ-20). They were excluded if patients were residing in a Long Stay Institution. Continuous variables were expressed by median and quartiles and analyzed with the Kruskal-Wallis test with Muller-Dunn post-test adjusted by Bonferroni or with the Mann-Whitney test for two groups. We used multivariable linear regression to identify independent predictors of caregiver burden. Results: A total of 178 family members were interviewed in a median of 8 [4-13.25] days after patient admission. Almost 40% of families presented high score of burden. Faith and Meaning in Life were the facets that scored the highest, with a median of 4.50 [4.00-5.00] for both facets. There was an inverse correlation between Zarit score and all of the WHOQOL-SRPB facets, indicating that the lower the spirituality, the greater the emotional burden. Inner peace was the strongest protective factor associated with burden. Conclusions: Psycho-socio-spiritual interaction can improve the coping ability of family caregivers of patients under exclusive palliative care, addressing a critical gap in the provision of holistic palliative care services.
In this study, a cross-sectional, predictive correlation design was used to identify and test a causal relationship between behavior disturbances, coping, family conflict, self-esteem and social support to caregiver burden among dementia caregivers. A total of 450 caregivers of dementia aged over 18 years were recruited from 4 hospitals in northern Thailand based on selected criteria. Demographic Questionnaire, Behavioral Pathology in Alzheimer’s Disease Rating Scale (BEHAVE-AD, The Family Conflict Scale, The Zarit Burden Interview Scale, The Perceived Social Support Questionnaire, The Brief COPE and The Rosenberg Self-Esteem with acceptable reliability coefficients were used to collect data. Data were analyzed using descriptive statistics, Pearson’s Product-Moment Correlation and path analysis by structural equation modeling. Results showed that the modified model fitted with the data and explained 58 % of the variance in caregiving burden among dementia caregivers. Coping and family conflict had a positive direct effect on caregiving burden (p < 0.001), whereas self-esteem and social support had a direct negative effect on caregiving burden (p < 0.001). Behavior disturbance had a positive indirect effect caregiving burden (p < 0.001) via family conflict. Coping had a positive indirect effect on caregiving burden (p < 0.001) via behavior disturbance and family conflict. Social support had a negative indirect effect on caregiving burden (p < 0.001) via family conflict and self-esteem. The results of this study could be used as a guideline for psychiatric nurses in planning an appropriate intervention program to reduce burden of caregivers of dementia patients in Thailand.
Objectives: The study used data from the Canadian Longitudinal Study on Aging to investigate the relationships among social support (measured as affectionate support, emotional/informational support, positive social interaction, tangible support), social participation and depression in caregivers and non-caregivers. Method: Hierarchical multiple regression was used to investigate relationships among social support, social participation, and depression. Analyses of variance were used to examine differences in the means of social support, social participation, and depression between the two participant groups. Results: Higher levels of affectionate support, positive social interaction, and social participation were associated with lower depression scores. Social participation was a significant mediator of the relationship between caregiver status and depression. Caregivers reported significantly higher levels of affectionate support, emotional/informational support, positive social interaction, and social participation than non-caregivers. There were no between-group difference in depression scores. Discussion: The study provides support for the beneficial role of social participation in preserving caregiver mental health. Results are discussed in the context of policy and practice implications for caregivers in Canada.
Purpose The aim of this study was to examine the psychometric properties of the Spanish version of the Experience of Caregiving Inventory (ECI-S), which is designed to assess the caregiver's appraisal of the impact of caring for a relative with a serious mental illness. Methods A cross-sectional study was conducted among 320 caregivers of a relative with an eating disorder to examine: (a) descriptive statistics; (b) internal consistency reliability; (c) the fit of the original ten-factor structure of the ECI through exploratory factor analysis, using a semi-confirmatory approach, for each subscale individually, and (d) concurrent validity. A total of 307 caregivers completed the scale. Results Reliability of the ECI subscales scores was acceptable (alpha = 0.63-0.89). Results replicated the original ten-factor structure of the instrument. The concurrent validity was supported by correlations of the ECI-negative subscale with psychological distress (GHQ-12, 0.43), and with depression and anxiety (HADS, 0.48 and 0.49, respectively). Conclusions The Spanish version of the ECI (ECI-S) demonstrated good psychometric properties in terms of validity and reliability that were similar to the original version. It is an acceptable and valid instrument for assessing the impact on family members of caring for a relative with an eating disorder and can be recommended for use in clinical settings in Spain.
Purpose This study was aimed at investigating the psychometric properties of the Family Crisis Oriented Personal Evaluation Scale (F‐COPES) for Turkish society, which assesses the coping skills of caregivers of individuals with chronic mental illnesses. Design and Methods The study was conducted with 153 family caregivers of patients with a chronic mental illness admitted to the inpatient and outpatient units of two university hospitals and İzmir Schizophrenia Solidarity Association. For the language validity, the translation‐back translation method was performed, for the content validity, expert opinions were obtained, for the construct validity, exploratory and confirmatory factor analysis was performed. For the reliability analysis, Cronbach α reliability coefficient was calculated and the test‐retest reliability analysis was performed. Findings The content validity index of the scale was 0.96. The Cronbach's α reliability coefficient for the overall scale was .80. Factor loadings of the subscales ranged between 0.56 and 0.69 for the Acquiring Social Support subscale, between 0.43 and 0.74 for the Reframing subscale, between 0.53 and 0.74 for the Seeking Spiritual Support subscale. The model fit indexes were as follows: χ2 = 176.369, df = 116, χ2/df = 1.52, RMSEA = 0.059, CFI = 0.90, IFI = 0.91, GFI = 0.88. Practice Implications The results of the present study show that the levels of psychometric properties of F‐COPES in Turkish society are acceptable. It is thought that it would be useful to use the F‐COPES in the assessment of coping behaviors of individuals who give care to patients with a chronic mental illness and that it can be used as measurement tool in studies to be conducted with caregivers of patients with a chronic mental illness to assess their coping skills.
Aim: This study aimed to develop the empowerment scale for family caregivers of community-dwelling people with dementia (PWD) in Japan (EFCD) and to validate the scale. Methods: The questionnaires were mailed to 820 family caregivers of PWD. The first version of the EFCD based on interviews with family caregivers and elderly care specialists and content validity results was tested. Participants also completed the Revised Scale for Caregiving Self-Efficacy and the General Health Questionnaire. For the EFCD development procedure, construct validity was evaluated by item analysis and exploratory factor analysis. Criterion validity was tested using Spearman's correlations between scores of the three scales. Reliability was evaluated using Cronbach's alpha, intraclass correlation coefficients (ICC), and Bland and Altman analysis. The final model was verified by confirmatory factor analysis. Results: Data from 304 family caregivers were analyzed. Exploratory factor analysis identified a 16-item, four-factor structure for the final version of the EFCD, as follows: (a) Excellent Practice in Dementia Care; (b) Understanding the Essence of Dementia Care; (c) Caring for Oneself as well as for the Person with Dementia; and (d) Having Peers with Shared Support Activities. Reliability and validity of the scale was established using the methods described. Conclusions: The developed EFCD is a reliable and valid measure that provides a simple assessment of empowerment among family caregivers of PWD.
Background: Family caregivers are important sources of care for hemodialysis patients. Although caring for a family member is a pleasant feeling, experiencing lots of physical and psychological caregiving burden influences the quality of life among family caregivers of hemodialysis patients. This study aimed to design and validate the quality of life inventory for family caregivers of patients on hemodialysis. Methods: A sequential-exploratory mixed method was conducted in Tehran, Iran, in 2017-2018. In the qualitative phase, the researcher conducted in-depth semi-structured interviews with 19 participants. Finally, a pool of 93 items was extracted from this phase. Then, psychometric properties such as face validity (Impact Score>1.5), content validity ratio (CVR>0.63), content validity index (Item Content Validity Index: ICVI>0.78, Scale Content Validity Index/Average: SCVI/Ave>0.8) and Kappa value (Kappa>0.7, internal consistency (Cronbach’s alpha>0.7), relative reliability (ICC:interclass correlation coefficient),absolute reliability (Standard Error of Measurement: SEM and Minimal Detectable Changes: MDC), convergent validity (Correlation Coefficient between 0.4-0.7), interpretability, responsiveness, feasibility, and ceiling and floor effects were assessed Results: The quality of life inventory for family caregivers of hemodialysis patients was developed with 34 items and five factors (namely patient care burden, conflict, positive perception of situations, self-actualization, fear, and concern). The findings confirm that the scale is acceptable regarding validity, reliability and other measurement features. Conclusions: This inventory is consistent with the health care status in Iran. Therefore, it can be used to measure the quality of life among family caregivers of hemodialysis patients.
Background Family members often need to be supported in informal care of the elderly and desire to be involved into care planning and decision‐making. Valid and reliable instruments are needed to measure how family members perceive the care and support they receive from nurses for older family members living at home. Aim The purpose of this study was to translate the 20‐item social support scale of the Family Functioning, Family Health and Social Support (FAFHES) questionnaire from English to German and test the validity and reliability of the scale among Swiss‐German‐speaking family caregivers of home‐dwelling elderly people who receive home healthcare services. Methods A cross‐sectional study was conducted to test the empirical and psychometric properties of the translated and culturally adapted version of the social support questionnaire. A factor analysis with the principal component analysis PCA was used to test construct validity. The internal consistency of items was measured with the Cronbach`s alpha coefficient. Results After a rigorous translation process the original 20‐item questionnaire was adapted into a 19‐item version and tested with family caregivers (n = 207) of home‐dwelling elderly. Psychometric testing of the German version of the social support questionnaire revealed that the three factors – affirmation, affect and concrete aid – were congruent with the original questionnaire. The accounted variance was 79.5% and the internal consistency determined by the Cronbach's alpha was 0.973. Conclusion The German version of the social support scale of the FAFHES questionnaire is a valid and reliable instrument to assess family perceived support on three dimensions – affirmation, affect and concrete aid – received from nursing professionals. The questionnaire should be tested further in other German‐speaking populations.
Background: Chemotherapy is one of the treatment modalities for cancer. The side effects of treatment, at times, can affect the emotional well-being of patients and their caregivers, thereby leading to distress. This paper aims at screening and identifying levels of distress among patients undergoing chemotherapy and their caregivers. Subjects and Methods: A cross-sectional study design was used. Patients (n = 102) undergoing chemotherapy in the outpatient daycare unit and their caregivers (n = 101) were screened for distress using the National Comprehensive Cancer Network distress thermometer and the problem checklist. Data were analyzed using descriptive and inferential statistics. Results: Patients (53.4%) and their caregivers (22.2%) reported experiencing moderate-to-severe levels of distress. Patients reported significant distress in the areas of physical (P = 0.000) and emotional problems, whereas caregivers reported distress in the areas of family (P = 0.000) and emotional problems. There was no significant difference in emotional problems (P = 0.05) between the patients and their caregivers. There was a positive correlation between physical and emotional problems (r = 0.760, P = 0.000). Majority of patients (85.2%) and caregivers (80.1%) showed interest to avail psycho-oncology services. Conclusions: Distress is prevalent among patients with cancer undergoing chemotherapy and their caregivers. Clinical implications highlight the need to identify and address caregiver distress during routine distress screening for patients using specific psychosocial interventions. Future research warrants the use of administering specific assessments to identify severe psychological issues, such as depression and anxiety for patients reporting severe levels of distress on the screening tool.
Objective Cancer diagnosis affects patients, their families, and their caregivers in particular. This study focused on the validation of the CareGiver Oncology Quality of Life (CarGOQoL) questionnaire in Portuguese caregivers of patients with multiple myeloma, from the caregiver's point of view. Method This was a cross-sectional study with 146 caregivers of patients with multiple myeloma from outpatient medical oncology and clinical hematology consultations from five hospitals in north and central Portugal. Participants were assessed on quality of life (QoL), psychological morbidity and social support. Result The Portuguese version maintains 17 of the original 29 items version, maintaining general coherence and a dimensional structure that is clinically interpretable. Reliability findings indicated good internal consistency for the total scale (0.86) and respective subscales (0.75 to 0.88), which is in agreement with the alpha values from the previous CarGOQoL validation study for the corresponding subscales (0.74 to 0.89) and total scale (0.90). Significance of results The CarGOQoL is a reliable and valid tool for clinical trials and intervention programs to assess QoL in caregivers of myeloma patients. Future studies should validate the adapted version in caregivers of other types of cancer patients including other chronic diseases.
Due to inadequate human and financial resource support, the development of mental health services in Cambodia has been undertaken by various non-governmental organizations (NGOs). Schizophrenia is the most common functional psychotic disorder, causing severe and chronic symptoms, and the programs provided by the NGOs should have enhanced the quality of life (QoL) of patients and their caregivers; however, epidemiological research, which is a driving force behind the recognition of mental health as a global public health concern, is lacking for schizophrenia in Cambodia. This study therefore aimed to create QoL evaluation questionnaires available in Khmer (the Cambodian language) for patients with schizophrenia and family caregivers, and to identify the social determinants and predictors of their QoL. This cross-sectional study recruited 59 patients and 59 caregivers attending three clinics operated by two NGOs: the Transcultural Psychosocial Organization (TPO) Cambodia and the Supporters for Mental Health (SUMH) Cambodia. We conducted linguistic validation of the Schizophrenia Quality of Life Questionnaire 18-item version (S-QoL 18) and the Schizophrenia Caregiver Questionnaire (SCQ), then analyzed correlations between the QoL dimensions and socio-demographic factors. The main findings of this study were as follows: 1) the newly created Khmer versions of S-QoL 18 and SCQ are relatively good psychometric tools that are suitable for research to identify patients' and caregivers' needs to improve their QoL; and 2) engaging in paid work or being of the post-Khmer Rouge generation results in higher QoL for patients, but having low household economic status or being affected by chronic disease leads to lower QoL for family caregivers. These findings are useful for enabling community mental health professionals and aid organizations to create programs to lessen the patient and caregiver burden in Cambodia. Further research is necessary to develop practical projects that will improve patients' and caregivers' QoL in various clinical settings in Cambodia.
Background: The aim of the study was to develop a multidimensional quality of life instrument suitable for use among individuals across cultures who have an informal care role for older persons. Methods: Participants were informal carers of older adults in the United Kingdom (n = 308), United States (n = 164), and China (n = 131). We carried out exploratory and confirmatory factor analyses of 61 items derived from the eight-factor Adult Carers Quality of Life Questionnaire with newly added items to define both traditional and nontraditional informal care roles. Results: Findings suggest a 24-item quality of life scale with a six-factor structure to caring for older adults that assesses (a) exhaustion, (b) adoption of a traditional carer role, (c) personal growth, (d) management and performance, (e) level of support, and (f) financial matters. Conclusion: We present a new scale to assess the multidimensional aspects of quality of life among those caring for older adults.
Informal caregivers of persons with dementia often report high levels of anxiety, depression and burden. Nonetheless, other less evaluated psychological symptoms might also influence their health-related quality of life (HRQoL). The aim of this study was to comprehensively analyse other psychological symptoms and their influence on the health-related quality of life of informal caregivers. Fifty-four informal women caregivers and fifty-six women non-caregivers were recruited to participate in the study. Psychological symptoms were assessed using the Symptom Check-List-90-Revised (SCL-90-R) questionnaire and the HRQoL with the EuroQoL-Five Dimensions and Three Levels (EurQoL-5D-3L) questionnaire. Significant between-group differences were found in the majority of scales in the SCL-90-R questionnaire (p < 0.01) and caregivers also reported a worse HRQoL than non-caregivers (p < 0.05). Several psychological symptoms such as obsession-compulsive (beta = 0.47), hostility (beta = 0.59), and somatization (beta = 0.49) had a significant impact on caregivers' HRQoL (R-2 explained between 0.17 and 0.30 of the variance). Caregivers are at a higher risk of suffering other psychological symptoms and show a moderate-high level of psychiatric morbidity, which therefore explains the poorer HRQoL outcomes. Supporting interventions should be provided to mitigate these psychological symptoms in order to improve their general distress and HRQoL.
Background Family caregivers of elderly patients with spinal tumours experience considerable pain and burden during the care process. This study aims to investigate the factors associated with caregiver burden in family caregivers of elderly patients with spinal tumours. Methods A total of 220 elderly patients with spinal tumours (age >= 65 years) hospitalized at the spine centre of our hospital from January 2015 to December 2017 and their family caregivers were recruited for this cross-sectional study. All participants completed a sociodemographic questionnaire. Caregiver burden, social support and self-efficacy were assessed by the Chinese version of the Zarit Burden Interview (ZBI), the Social Support Rating Scale (SSRS) and the General Self-Efficacy Scale (GSE), respectively. The factors related to caregiver burden were analysed by multivariate analysis. P < 0.05 was considered statistically significant. Results The 216 elderly patients with spinal tumours were 71.59 +/- 8.49 years old, and their caregivers were 70.46 +/- 9.13 years old. A total of 170 patients were cared for by their spouses, who accounted for 78.7% of all caregivers. The ZBI score for the family caregivers was 35.5 +/- 7.5, and most caregivers (84.5%) reported a moderate or heavy burden. The factors related to caregiver burden included patient paralysis, the primary cancer site, chemotherapy and/or radiation, cognitive dysfunction, functional status, monthly income, pain score, caregivers' SSRS score, and GSE score. Conclusions Most family caregivers of elderly patients with spinal tumours have a considerable caregiver burden. Interventions based on social support and self-efficacy can help reduce caregiver burden.
Purpose: To examine the level of caregiving burden and sleep quality as well as their interrelationship amongst family caregivers of Chinese male patients with advanced cancer. Method: A cross-sectional study was conducted in Hong Kong. The Caregiver Reaction Assessment (CRA) and the Pittsburgh Sleep Quality Index (PSQI) were used to measure caregiving burden and sleep quality of the family caregivers. Results: A total of 96 family caregivers were recruited. Disrupted schedule (3.8; SD = 0.8) was rated as the most affected consequence of caregiving burden. Around 78.1% of the caregivers suffered from sleep problems. Hierarchical multiple regression revealed that health problems due to caregiving burden was independently associated with poor sleep quality after controlling for socio-demographic characteristics of both patients and caregivers (regression coefficient, B = 2.09, P = 0.012). Conclusions: Caregiving burden amongst family caregivers of male patients with advanced cancer was remarkably high and associated with poor sleep quality. Strategies aiming to alleviate caregiving burden of caregivers may help break this vicious cycle to enhance the sleep quality of caregivers. Results also underscore the need to assess and develop intervention to relieve caregiving burden for family caregivers of cancer patients.
Objective The Carer Support Needs Assessment Tool (CSNAT) was developed in the UK and has been shown to be effective to assess and address support needs of family carers of terminally ill patients at home. In German language, there is a lack of an evidence-based comprehensive assessment tool for family carers in palliative home care. The objectives of this study were to translate and develop a culturally adapted version of the CSNAT for a German-speaking context including the assessment of feasibility, face, and content validity. Method A translation and validation study was conducted in three steps: (1) translation of CSNAT following International Society for Pharmacoeconomics and Outcomes Research criteria; (2) cognitive testing in five German-speaking regions in Germany, Austria, and Switzerland with 15 family carers; and (3) pilot testing in palliative home care services. Evaluation was by telephone interviews with those involved in the assessments (family carers, health care professionals) and a focus group discussion with the health care professionals. Data were analyzed using content analysis. Results The regional idiomatic variety raised challenges in the process of translation. Cognitive testing revealed semantic, conceptual, syntactic, and idiomatic issues. During the pilot, 25 assessment conversations were held. Carers reported that the German version called KOMMA was brief, easy to understand and to complete, and helpful. They appreciated that the items adequately addressed their support needs and reminded them of their own strengths and resources. Health care professionals observed good acceptance by carers, the expression of unexpected patterns of needs, and extensive assessment conversations, but some raised concerns that the assessment process might shift attention to carers' needs at the cost of the patients. Significance of results A multi-step process of translation, cognitive testing, and pilot testing led to a culturally well-acceptable German tool (KOMMA). Comprehensibility, acceptance, face, and content validity, as well as feasibility were demonstrated.
Background Delirium is a common condition in critically ill patients, affecting nearly half of all patients admitted to an intensive care unit (ICU). Family caregivers of critically ill patients can be partners in the early recognition, prevention and management of delirium provided they are aware of the signs/symptoms and appropriate non-pharmacological strategies that might be taken. Valid, reliable instruments that assess family caregiver knowledge are essential so that nurses can prepare family caregivers to be effective partners. The purpose of the current study was to (a) adapt an existing caregiver delirium knowledge questionnaire (CDKQ) for use by nurses to measure a family caregiver's delirium knowledge in the ICU; and (b) examine the psychometric properties and structure of the adapted Caregiver ICU Delirium Knowledge Questionnaire (CIDKQ). Methods In this cross-sectional study, a multidisciplinary team developed the 21-item CIDKQ (possible score range: 0-21) and administered it to 158 family caregivers of critically ill patients. Descriptive statistics were examined for all variables. The CIDKQ was analyzed for face validity, content validity, reliability and internal consistency. Results The mean CIDKQ score was 14.1 (SD: 3.5, range = 2 to 21). Path analysis revealed that a family caregiver's delirium knowledge in the actions and symptoms dimensions had a direct effect on knowledge of delirium risk factors. The CIDKQ was found to have face validity and reliability (Cronbach's alpha = 0.79). Conclusions The findings indicated good validity and reliability of the CIDKQ as a measure of ICU delirium knowledge in family caregivers of critically ill patients.
Background: Health-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. Methods: A 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. Results: CSI 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. Conclusion: In 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 registration: This manuscript was retrospectively registered on 05-04-2016 in the Netherlands Trial Register (NTR5932). http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=5932.
This study aims to develop and validate the Scale for Partnership in Care between staff and families of older adult nursing home (NH) residents—for Family (SPIC-F). The components of partnership were identified on the basis of literature reviews and focus group interviews. The content validity of 41 preliminary items was verified by 10 experts, and a pilot study was conducted. The reliability and validity of the instrument was tested on 330 families of older adult NH residents. The final instrument comprised 20 items in three categories: professional caring and support, cooperative relationship and information sharing, and participation in care. Each item is rated on a four-point Likert scale, with total scores ranging from 20–80. The reliability of the instrument was 0.95, and test–retest ICC was 0.83. This instrument could be utilized to develop interventions to establish an efficient partnership and assess its outcomes.
Caregivers of individuals with heart failure are at high risk for diminished quality of life because of the energy involved in providing necessary care. Caring for someone with chronic heart failure can affect caregivers' physical, psychological, and social health, collectively referred to as the burden of care, and may also affect family functioning. The current cross-sectional study aimed to investigate the relationship between caregiver burden and family functioning in caregivers of older adults with heart failure in southeastern Iran using the Zarit Burden Inventory and the Family Assessment Device based on the McMaster Model of Family Functioning. The Pearson correlation coefficient, independent t test, and analysis of variance were used to determine relationships among variables. Results showed a significant correlation between burden of care and total score of family functioning. Therefore, it is necessary to take measures to reduce burden of care for caregivers through education and support programs and to improve their family functioning and quality of life.
Aim: Considering that exercise programmes are related with a range of benefits for end-stage renal disease patients, we evaluated the association between haemodialysis (HD) patients’ involvement in intradialytic exercise training with the burden of their family caregivers. Methods: In this cross-sectional study, 60 caregivers of HD patients were recruited, 30 of them who cared for patients that regularly participated in an exercise programme during dialysis sessions and 30 caregivers who looked after patients undergoing usual HD treatment without intradialytic exercise. The caregivers were submitted to the Caregiver Burden Scale (CBS) and their quality of life (short-form-36 (SF-36)), anxiety and depression levels were assessed. Data were expressed as mean ± SD or median (interquartile range). Results: Multiple linear regression showed that the global CBS score was significantly associated with the exercise training after adjusting for age, educational level and anxiety level of caregivers, and dependency level of patients measured by the Lawton scale (coefficient of determination = 0.53; adjusted coefficient of determination = 0.48). Additionally, the caregivers of HD patients submitted to intradialytic exercise (42.0 ± 12.9 years, 33.3% male) compared to caregivers of patients undergoing usual treatment (50.7 ± 17.5 years, 26.7% male) exhibited less caregiver burden (global CBS score = 1.2 (0.2) vs 1.9 (0.7), P < 0.001), better quality of life (physical component score = 53.7 (9.6) vs 49.7 (16.2) and mental component score = 50.6 (17.5) vs 28.2 (32.5), P < 0.05) and lower anxiety (7.2 ± 4.2 vs 10.8 ± 4.1, P = 0.001) and depression levels (3.0 (3.3) vs 6.0 (5.3), P = 0.034), respectively. Conclusions: Intradialytic exercise training in HD patients was associated with lower burden of their family caregivers.
Background: A diagnosis of Parkinson's disease (PD) has a significant psychological impact on both the person diagnosed and their loved ones, and can have a negative effect on family relationships. Caring for someone with a long-term progressing illness may cause anticipatory grief, i.e., experienced before a bereavement. This has been widely studied in illnesses such as dementia and cancer, but less so in relation to PD. The study aims were: (I) to demonstrate the occurrence of anticipatory grief experienced by carers of people with PD; (II) to explore how this grief relates to caregiver burden and caregiver depression and demographic variables. Methods: Family carers of people with moderate to advanced PD (Hoehn & Yahr stages 3-5) were invited to complete a survey, including demographic questions and three questionnaires: Zarit Burden Interview (ZBI); 16-item Geriatric Depression Scale (GDS); and Anticipatory Grief Scale (AGS). Results: Anticipatory grief was common among carers of people with PD [mean AGS score =70.41; standard deviation (SD) =16.93; sample range, 38-102]. Though distinct concepts, carers with higher burden and depression scores also experienced more anticipatory grief symptoms. Carers experiencing higher anticipatory grief tended to be caring for someone of a younger age, displaying more non-motor symptoms, at a more advanced disease stage, and who considered either themselves and/or their loved one as depressed. Conclusions: Carers of people with advanced PD experienced anticipatory grief, as well as depression and a high caregiver burden. To improve carer outcomes, our focus should include the period both before and after the death of a loved one, and carers should receive regular psychological assessment and support.
OBJECTIVES: Hepatic encephalopathy (HE) is common in advanced cirrhosis and is characterized by marked neuropsychiatric abnormalities. However, despite its severity and effects on brain function, the impact of HE on psychological status of patients has not been adequately assessed. The aim of this study was to evaluate the effect of HE on psychological status of patients and their informal caregivers. METHODS: Fifteen patients with cirrhosis and episodic or persistent HE and their corresponding informal caregivers were included. Semistructured interviews were performed in patients and caregivers. Quality of life (QoL) was assessed by the short-form 36 in both patients and caregivers, and the Zarit burden score was measured in caregivers. The analysis of interviews was performed using qualitative methodology. RESULTS: HE causes a major psychological impact on patients with HE. The first episode of HE caused a very significant impact that was reported with deep feelings, mainly of fear, anger, misery, anxiety, and sorrow, which persisted with time. Symptoms causing more psychological impact on patients were impaired ability to walk and speak. All effects were associated with a marked impairment in QoL. The psychological impact was also marked in caregivers who had a major burden, as assessed by the Zarit score. Moreover, QoL, particularly the mental component score, was markedly impaired in caregivers in intensity similar to that of patients. DISCUSSION: HE has a profound psychological impact on patients and their informal caregivers, associated with a marked negative influence on QoL. The psychological effects of HE on patients and caregivers should be evaluated and treated.
Purpose: Many patients with advanced cancer receive primary supports from informal caregivers (IC). As patient health deteriorates, IC assume increasing responsibility, often accompanied by distress. We investigated the quality of life (QOL) of IC of patients referred to a palliative radiotherapy (PRT) program. Methods: IC accompanying patients to a dedicated PRT clinic completed a survey based on the validated Caregiver Quality of Life Index-Cancer (CQOLC). Demographics, burden, and engagement in support services were evaluated. Summary statistics were calculated, and parameters were assessed for association with CQOLC scores by a generalized linear model. Results: Two hundred one surveys were analyzed representing 197 unique patients. The mean age was 68.3 years, with predominantly lung (25.0%) and prostate (19.3%) malignancies. 24.4% had been in hospital/long-term care within the previous 7 days. IC were 60.8% female, and 60.6% were the patient’s spouse. 69.5% lived with the patient and 38.3% were additionally employed. IC spent a daily mean of 6.6 h (SD 7) assisting with instrumental (72.5%) and basic (37.5%) activities of daily living. Mean CQOLC score was 82.1/140 (SD 20). 63.8% of IC had previously accessed support service(s), most commonly home care (37.2%) and pharmacy (29.1%). 55.9% indicated interest in services not yet accessed. Multivariate analysis revealed additional employment, cohabitation, poor patient performance status, and interest in accessing more support services significantly correlated with higher IC burden. Conclusions: Employing the CQOLC to screen IC of patients referred to a PRT program permits early identification of vulnerable IC to facilitate linkage with appropriate supports.
The study objective was to develop and test a new survey instrument that measures caregiver-centered communication. We developed a questionnaire inspired by the National Cancer Institute framework on patient-centered communication, focusing on family caregiver communication for this tool. The questionnaire includes 5 subscales: exchange of information, relationship with team, emotions, managing care, and decision-making. The initial questionnaire was reviewed by domain experts for face validity and edited further to include 30 items. We administered the modified questionnaire to 115 family caregivers of patients with serious illness in various settings. Cronbach α for the entire scale was 0.97 and ranged from 0.82 to 0.93 for the 5 subscales. Participants found that the survey addressed important concepts and that items were in most cases easy to understand. This instrument provides a structured way to assess caregiver-centered communication, addressing a pressing need for tools that measure the extent to which communication is responsive to the needs and preferences of family caregivers. Further testing and refinement are needed to improve the ease of use and examine the reliability and validity of this measure.
Background and Purpose: The Portuguese instrument for informal caregivers' skills providing care of aged people after a stroke (ECPICID-AVC) evaluates the capacities that informal caregivers must have for supporting aged stroke survivors. The purpose was to adapt and validate the ECPICID-AVC to be used in Brazil. Methods: A methodological study was conducted. Results: The terms with the lowest degree of comprehension were adapted. The factor analysis suggested the exclusion of three items and that the remaining be grouped into six domains. The factor loadings varied from 0.525 to 0.924. The internal intra-assessor consistency was satisfactory (ICC = 0.94, CI 95%). Total reliability was considered excellent (Cronbach's alpha = 0.914). Conclusions: The ECPICID-AVC is considered appropriate for using in Brazil.
Purpose: The Singapore Caregiver Quality of Life Scale (SCQOLS) was recently developed and validated in two languages - English and Chinese. The total and domain scores are scaled to range from 0 to 100. However, the scale is not at the interval-ratio level of measurement. To facilitate interpretation, we established the percentiles of the scale’s total and domain scores among family caregivers of patients with advanced cancers and demonstrate the effect size in terms of differences in relation to caregiver and patient characteristics. Methods: Data were drawn from a cross-sectional survey of family caregivers of patients with stage III or IV solid cancers in Singapore. Quantile regression was used to estimate the percentiles in relation to caregiver and patient characteristics. Results: Participants in adjacent categories of patient’s performance status and caregiver’s having other family members to share caregiving duties differed by 3 to 5 points in median quality of life total score and most domain scores (each Bonferroni-adjusted P, P[B], < 0.05). Ethnicity was associated with the Physical Well-being and Experience & Meaning domain scores (each P[B] < 0.05), with variable direction and magnitude. Education was associated with Mental Well-being and Financial Well-being (each P[B] < 0.05). Equations and examples for calculation of the percentiles are provided. Conclusion: Percentiles and effect size estimates are provided to facilitate interpretation of the SCQOLS.
Objectives: The Singapore Caregiver Quality of Life Scale (SCQOLS) comprises five domains and 51 items in total. This study aimed to develop and evaluate short forms of SCQOLS. Study Design and Setting: Data were collected from 612 family caregivers of patients with advanced cancers in Singapore. Exploratory factor analysis and best subset regression were used to identify candidate items for each domain. The short forms were evaluated for measurement properties. Results: Inclusion of at least two items per domain in the short form gave correlation coefficients of at least 0.8 with the corresponding domain scores in the full-length version. The short forms and full-length version had similar correlation coefficients with Negative Personal Impact and Positive Personal Impact measures. Two of the five domains of the 10-item version had Cronbach's alpha 0.50 and test-retest reliability 0.65. A 15-item version of the scale with two to four items per domain performed satisfactorily in all aspects evaluated. Conclusion: A 15-item short form of the SCQOLS (SCQOLS-15) is valid and reliable for the assessment of the overall and domainspecific quality of life of family caregivers. A 10-item short form (SCQOLS-10) may serve as a quick, valid and reliable assessment of the overall level of quality of life.
Aim: The study aims to examine whether characteristics of patients with Acquired Brain Injury–ABI (time elapsed since injury, level of dependence and behavioral problems) and resilience factors of the caregiver predicted caregiver well-being (quality of life, anxiety,depression and positive aspects of caregiving). Methods: 78 voluntary family caregivers (75.6% female) of patients with ABI completed the Barthel Index, Head Behavior Injury Scale, Questionnaire of Resilience in Caregivers of Acquired Brain Injury, WHOQOL-BREF, Hospital Anxiety and Depression Scale,and Positive Aspects of Caregiving Scale. Correlation analysis and stepwise regression were carried out. Results: Time elapsed since injury showed a negative relationship with positive aspects of caregiving. On the other hand, care-recipients’ behavioral problems showed significant associations with all caregiver variables: negatively with quality of life and positive aspects of caregiving, and positively with anxiety and depression. Regarding resilience, we found a positive relationship with quality of life and positive aspects of caregiving, and a negative association with anxiety and depression, showing better predictive power with depression. Conclusions: We confirm the relevance of developing multidisciplinary caregiver intervention programmes focused on positive ways to handle care-recipients’ behavioral problems and developing positive coping skills, such as positive reinterpretation, acceptance and seeking social support, that may optimize caregiver resilience.
Background The McGill Quality of Life Questionnaire - Expanded (MQOL-E) and the Quality of Life in Life-Threatening Illness-Family Carer/Caregiver version (QOLLTI-F) are developed for use with patients facing the end of life and their family carers, respectively. They are also developed for possible use as companion instruments. Contemporary measurement validity theory places emphasis on response processes, i.e. what people feel and think when responding to items. Response processes may be affected when measurement instruments are translated and adapted for use in different cultures. The aim of this study was to translate and examine content validity and response processes during completion of MQOL-E and QOLLTI-F version 2 (v2) among Swedish patients with life-threatening illness and their family carers. Methods The study was conducted in two stages (I) translation and adaptation (II) examination of content validity and response processes using cognitive interviews with 15 patients and 9 family carers. Participants were recruited from the hemodialysis unit, heart clinic, lung clinic and specialized palliative care of a Swedish county hospital. Patients had life-threatening illness such as advanced heart failure, advanced chronic obstructive pulmonary disease, end-stage kidney disease or advanced cancer. Patients were outpatients, inpatients or receiving home care. Results Patients and family carers respectively believed that the items of the MQOL-E and QOLLTI-F v2 reflect relevant and important areas of their quality of life. Although some items needed more time for reflection, both instruments were considered easy to understand. Some changes were made to resolve issues of translation. Participants expressed that reflecting on their situation while answering questions was valuable and meaningful to them, and that responding was an opportunity to express feelings. Conclusions The results of response processes pertaining to the Swedish translations of both MQOL-E and QOLLTI-F v2 contribute evidence regarding content validity, linguistic equivalence and cultural appropriateness of the translated instruments. In addition, results show that the instruments may support conversations on matters of importance for quality of life between patients and/or family carers and health care professionals. Further research is needed to study the psychometric properties of Swedish translations.
Background Caregivers play a pivotal role in providing care for mentally ill patients. Increase in caregiver burden can make them vulnerable to mental illness themselves.Aims We assessed the severity of burden of care and its association with depression, anxiety and quality of life among caregivers of patients with alcohol use disorder (AUD) and schizophrenia. Methods This was an observational, cross-sectional, single-centred study of 50 consecutive caregivers of patients with AUD and schizophrenia. Participants were recruited from the psychiatry outpatient department of a tertiary care hospital between January and June 2017. The caregivers were further assessed by demographic details, Hospital Anxiety Depression Scale for assessment of depression and anxiety, Zarit Burden Interview for assessment of caregiver burden and WHO Quality Of Life-BREF for assessment of quality of life. Statistical data were analysed using GraphPad InStat V.3.06 (California). Multiple linear regression analysis was applied to identify the predictors of caregiver burden. Results Burden of care experienced by caregivers of patients with AUD is as high as that of caregivers of patients with schizophrenia (U=1142.5, p=0.46). Caregivers experiencing high burden of care are likely to have symptoms of anxiety (U=22, p<0.001), depression (U=32, p<0.001) and poor quality of life (U=84.5, p<0.001). Female caregivers are likely to experience higher burden of care (U=819.5, p=0.006). For caregivers of patients with schizophrenia, anxiety, environmental health, socioeconomic status and patients’ occupation can predict burden of care, while for caregivers of patients with AUD, depression and environmental health can predict burden of care. Conclusion Our study suggests that caregivers of patients with AUD experience burden of care as high as that of caregivers of patients with schizophrenia. Caregivers with high burden of care are more likely to have depression, anxiety and poor quality of life. Trial registration number CTRI/2017/03/008224.
Background: Family caregivers of patients on haemodialysis can experience life changes and depression. Aims: This study assessed the self-perceived burden on their family caregivers of haemodialysis patients in Jordan, and the caregivers' perceived burden of caregiving and depression. The predictors of caregiver outcomes were determined. Methods: This cross-sectional study included 190 patients on haemodialysis and their caregivers in Jordan. Patients' self-perceived burden on their caregivers was assessed using the self-perceived burden scale. For caregivers, burden was assessed using the Oberst caregiving burden scale and Bakas caregiving outcomes scale - difficulty subscale. Caregivers' depression was assessed using the patient health questionnaire-9. Mean scores and standard deviations (SD) were calculated. Multiple regression analysis was done to determine the predictors of caregiver outcomes. Results: Patients thought that they were a moderate to severe burden on their caregivers (mean score 36.31, SD 3.48). Caregivers perceived themselves as moderately burdened, and thought that their lives had changed for the worse because of caregiving (mean score 2.82, SD = 0.98). Caregivers were moderately depressed (mean score 1.80, SD 0.42). Multiple regression analysis showed that the perceived difficulty of caregiving tasks and patients' self-perceived burden predicted the caregiver outcomes. The difficulty of caregiver tasks explained 38% of the overall variance in the caregiver outcomes. Patient's self-perceived burden on their caregivers explained 16.4% of the variance. Conclusion: Factors that affect the burden on caregivers of dialysis patients should be identified and interventions considered to support caregivers and reduce this burden.
Background Alzheimer's disease and related dementias are associated with increasing health burden in low- and middle-income countries. Less well-recognized is the potential health burden experienced by other affected individuals, such as family caregivers. In this study, we sought to profile the burden of care and its association with symptoms of depression and anxiety among informal caregivers of people living with dementia in rural southwestern Uganda. Method We conducted a cross-sectional study of 232 family caregivers of people with dementia. The key measured variables of interest were caregiving burden (Zarit Burden Index) and symptoms of depression and anxiety (Depression Anxiety Stress Scales). We fitted multivariable regression models specifying depression and anxiety symptoms as the primary outcomes of interest and caregiving burden as the primary explanatory variable of interest. Results Family caregivers of people with dementia experience significant caregiving burden, with each item on the Zarit Burden Index endorsed by more than 70% of study participants. Nearly half [108 (47%)] of caregivers had Zarit Burden Interview scores >60, suggestive of severe caregiving burden. In multivariable regression models, we estimated a statistically significant positive association between caregiving burden and symptoms of both depression [b = 0.42; 95% confidence interval (CI) 0.34-0.49] and anxiety (b = 0.37; 95% CI 0.30-0.45). Conclusion Family caregivers of people with dementia in rural Uganda experience a high caregiving burden, which is associated with symptoms of depression and anxiety. Interventions aimed at reducing caregiving burden may have important collateral mental health benefits.
Purpose: To estimate informal caregiver (ICG) strain in people from a glaucoma clinic.; Methods: Patients with glaucoma were consecutively identified from a single clinic in England for a cross-sectional postal survey. The sample was deliberately enriched with a number of patients designated as having advanced glaucoma (visual field [VF] mean deviation worse than -12 dB in both eyes). Patients were asked to identify an ICG who recorded a Modified Caregiver Strain Index (MCSI), a validated 13 item instrument scored on a scale of 0-26. Previous research has indicated mean MCSI to be >10 in multiple sclerosis and Parkinson's disease. All participants gave a self-reported measure of general health (EQ5D).; Results: Responses from 105 patients (43% of those invited) were analysed; only 38 of the 105 named an ICG. Mean (95% confidence interval [CI]) MCSI was 2.4 (1.3, 3.6) and only three ICGs recorded a MCSI > 7. The percentage of patients with an ICG was much higher in patients with advanced VF loss (82%; 9/11) when compared with those with non-advanced VF loss (31%; 29/94; p = 0.001). Mean (standard deviation) MCSI was considerably inflated in the advanced patients (5.6 [4.9] vs 1.5 [2.2] for non-advanced; p = 0.040). Worsening VF and poorer self-reported general health (EQ5D) of the patient were associated with worsening MCSI.; Conclusion: ICG strain, as measured by MCSI, for patients with non-advanced glaucoma is negligible, compared with other chronic disease. ICG strain increases moderately with worsening VFs but this could be partly explained by worse general health in our sample of patients.
Background: To examine the relationship between social support and depressive symptoms of Chinese family caregivers of older people with disabilities, and to evaluate the role of caregiver burden as a potential mediator of that relationship.; Methods: A survey questionnaire was completed face-to-face by 567 primary family caregivers of older people with disabilities in four provinces in China. Covariates that may affect depressive symptoms, such as the characteristics of disabled people (socio-economic factors, functional and cognitive capacity) and caregivers (caregiver duration and self-rated health of caregivers) were collected. Social support was measured by the Multidimensional Scale of Perceived Social Support (MSPSS); depressive symptoms were assessed by the shortened 10 item version of Center for Epidemiological Studies Depression scale (CES-D); and the caregiver burden was assessed by the Zarit Burden Interview (ZBI).; Results: The prevalence of depressive symptoms among caregivers was 37.7%. Higher levels of social support was negatively associated with lower depressive symptoms. This relationship was partially mediated by the caregiver burden, where higher levels of the caregiver burden were negatively associated with depressive symptoms. Furthermore, caregivers who were women, spent extended time in caregiving and were in poor health, reported significantly higher depressive symptoms.; Conclusions: Our results indicated that social support was negatively associated with depressive symptoms in family caregivers and in the caregiver burden. The caregiver burden partially mediated the social support-depressive symptoms association. Interventions for family caregivers should include increasing social support, health monitoring and structured interventions to reduce the caregiver burden and attenuate family caregivers' depressive symptoms.
Background: Providing informal care for a relative or friend with medical or mental needs can extol a physical burden on the caregiver, including impaired aspects of sleep quality such as suboptimal sleep duration, lengthened sleep latency, frequent awakenings, daytime sleepiness, and poor self-rated sleep quality. Diminished sleep quality can worsen the health in the caregiver, including dysregulation of hypothalamic-pituitary-adrenal axis (HPA) activity. Few studies have attempted to describe sleep in young adults who provide regular informal care. This study examines subjective and objective indicators of sleep quality and diurnal cortisol rhythms among young adult caregivers relative to non-caregiving peers. We expect that caregivers will exhibit poorer objective and subjective sleep quality and greater dysregulation in diurnal cortisol indices, than demographically similar non-caregivers, and that caregivers with poorer sleep will exhibit pronounced cortisol dysregulation.; Methods: Participant self-reported sleep quality over the prior month via the Pittsburgh Sleep Quality Index and objective sleep quality was observed via wrist actigraph for three consecutive days. Diurnal salivary cortisol was also measured across the three days of actigraph monitoring.; Results: Informal caregivers exhibited more self-reported sleep disturbance and greater sleep latency than non-caregivers, as well as more objectively measured sleep fragmentation. Caregivers with a shorter sleep duration were observed to have flatter diurnal cortisol slopes than caregivers with a relatively longer sleep duration.; Conclusions: Young adult caregivers appear to be at risk for impairment in sleep quality, which in turn might impact health through HPA axis dysregulation. Longitudinal research is needed to identify these relationships across time.
Background: Providing care often causes negative reactions and psychological distress in family caregivers of patients with heart failure. How these 2 constructs are related has not been fully explored.; Objective: The aims of this study were to describe caregiver reactions to caregiving and psychological distress and to determine the associations between caregiver reactions to caregiving and psychological distress in family caregivers of patients with heart failure.; Methods: In this secondary analysis of a cross-sectional study, the sample included 231 patients and their family caregivers. The Chinese version of the Hospital Anxiety and Depression Scale was used to assess psychological distress (ie, symptoms of anxiety and depression), and the Caregiver Reaction Assessment was used to measure both negative and positive caregiver reactions to caregiving, including financial problems, impact on schedule, health problems, lack of family support, and self-esteem.; Results: Of the participants, 15.2% and 25.5% of caregivers reported symptoms of depression and anxiety, respectively. Impact on schedule was the most common caregiver reaction, followed by financial problems. Impact on schedule was related to both the caregivers' symptoms of depression (odds ratio [OR], 1.705; P = .001) and anxiety (OR, 1.306; P = .035), whereas financial problems were only related to symptoms of anxiety (OR, 1.273; P = .011).; Conclusions: The findings suggest that interventions for reducing the negative impact on schedule of caregiving and helping to solve the caregivers' financial concerns might help to relieve their symptoms of depression and anxiety.
Objective: To evaluate the validity and reliability study of the Supportive Care Needs Survey for partners and caregivers of cancer patients in Turkish society (SCNS-P&C-T).; Methods: This cross-sectional survey followed by a test-retest reliability and psychometric validation study was conducted with 270 participants. The research data were collected using a patient and caregiver demographic survey, the SCNS-P&C-T, the Caregiver Strain Index, and the Hospital Anxiety and Depression Scale.; Results: Ten expert opinions were found to be consistent for content validity of the scale (I-CVI = 0.993, S-CVI = 0.956). The confirmatory factor analysis could not confirm the factor structure of the original scale. Therefore, an exploratory factor analysis was performed and the scale factor structure was determined. These factor structures are (a) psychological and emotional needs, (b) health care and information, (c) work and social needs, (d) communication and family needs.; Conclusion: The SCNS-P&C-T is a valid and reliable tool which can be used to identify unmet needs among caregivers in Turkish populations.
Objective: To measure the psychological distress among the informal caregivers of disabled young adults with traumatic brain injuries (TBI) and to identify its associated factors.; Methods: An analytical cross sectional study was conducted with 76 informal caregivers of young adults (19 - 50 years) with TBI, using admission records of one of the tertiary care hospitals in Karachi, Pakistan from 2015 to 2016. Data were collected using a structured questionnaire comprising a general demographic questionnaire and the General Health Questionnaire- 28. The effect of the predictors on the psychological distress was determined by applying multiple linear regression analysis.; Results: The mean score of the psychological distress was found to be 23.5±14.28. The findings indicated that anxiety and insomnia, and social dysfunction were the most affected domains of psychological distress; whereas, depression was the least affected. Factors including the management of finances, number of children, patient's gender, and patient's level of disability and lack of socialization were positively associated with the level of distress. As reported by participants, religious beliefs served as a coping mechanism for most of them.; Conclusions: The study showed a high level of distress among informal caregivers of young adults with TBI. For recognizing the psychological effects of TBI in patients and their informal caregivers, it is important to initiate and ensure the provision of psychological support to the patients and their families.
The purpose of this study was to develop and evaluate the Family Caregiver Identity Scale (FCIS), an instrument designed to measure the extent to which an individual identifies with the family caregiver role. The process of instrument development outlined in the Standards for Educational and Psychological Testing was combined with Dillman's four stages of pretesting. This was a multistage, iterative process, including several revisions based on feedback from experts, interviews, and pilot testing. Factor analyses were performed to test the hypothesized model of caregiver identity. A version of the FCIS consisting of 18 items was created and demonstrated initial evidence of validity. The FCIS will enable gerontological professionals to assess caregiver identity. The absence of caregiver identity is a factor in caregivers not accessing support services. This study contributes to the growing body of research connecting caregiver identity and support service utilization by caregivers.
Introduction: Living with a person with dementia (PWD) causes physical and psychological problems in family caregivers (FCGs), as well as a reduction in their Quality of Life (QOL). The purpose of this study was to examine the possible effectiveness of the therapeutic songwriting method for improving the QOL and well-being of FCGs of PWD. Methods: The sample of caregivers (n = 21) was divided into three homogeneous groups that received 12 intervention sessions. A non-randomized, quasi-experimental design with repeated measures (pre-post intervention) was employed to determine a possible therapeutic effect. The State-Trait Anxiety Inventory (STAI), Short-Form Health Survey (SF-36v2), Beck Depression Inventory, and Rosenberg Self- Esteem Scale were administered before and after the intervention. Results: The results showed a decrease in anxiety and depression scores and an increase in scores of self-esteem after the intervention. Regarding QOL, post-intervention scores in the Mental Component Summary and Mental Health were significantly higher. In contrast, a small effect size was observed for difference between pre-test and post-test on the subscales of QOL: General Health, Social functioning, Role Emotional and Bodily Pain. Discussion: This exploratory study concludes that therapeutic songwriting can help to reduce caregivers' symptoms of depression and anxiety and improve their perceived self-esteem and QOL. This work reinforces the progress made to date and provides new results that highlight the benefits of music therapy for FCGs of PWD.
Background/objective: Anxiety is common in patients experiencing neurocritical illness and their family caregivers. Resilience factors like mindfulness and coping skills may be protective against symptoms of emotional distress, including anxiety. Less is known about the interplay of anxiety symptoms and resilience factors between patients and caregivers. The purpose of this study is to examine the trajectory of anxiety symptoms among dyads of neurocritical care patients without major cognitive impairment and their family caregivers and to elucidate the relationship between resiliency (e.g., mindfulness and coping) and anxiety in these dyads.; Methods: Prospective, longitudinal study of adults admitted to the neurological intensive care unit (Neuro-ICU) and their caregivers. Dyads of patients (N = 102) and family caregivers (N = 103) completed self-report measures of mindfulness (Cognitive Affective Mindfulness Scale-Revised) and coping (Measure of Current Status-Part A) during Neuro-ICU hospitalization and anxiety symptoms (anxiety subscale of the Hospital Anxiety and Depression Scale) during hospitalization and at 3- and 6-month follow-up. We used actor-partner interdependence modeling to predict the effect of one's own baseline characteristics on one's own and one's partner's future anxiety symptoms.; Results: Rates of clinically significant anxiety symptoms were 40% for patients and 42% for caregivers at baseline. Of these, 20% of patients and 23% of caregivers showed moderate and severe symptoms. Approximately, one-third of patients and caregivers reported clinically significant anxiety symptoms at 3- and 6-month follow-ups, with more than 20% endorsing moderate or severe symptoms. Patients' own baseline mindfulness, coping, and anxiety symptoms were associated with lower anxiety symptoms at all time points (ps < 0.001)-this was also true for caregivers. For both patients and caregivers, one's own baseline mindfulness predicted their partner's anxiety symptoms 3 months later (p = 0.008), but not at 6-month follow-up.; Conclusions: Anxiety symptoms in Neuro-ICU patient-caregiver dyads are high through 6 months following admission. Mindfulness is interdependent and protective against anxiety in dyads at 3-month but not 6-month follow-up. Early, dyad-based interventions may prevent the development of chronic anxiety in patients without major cognitive impairment and caregivers.
Background. To create efficacious interventions for military family caregivers (MFCs), it is important to understand the characteristics and predictors of completers and dropouts of newly developed supportive interventions. Aim. The purpose of this study was to examine completion patterns in MFCs enrolled in an educational intervention feasibility study. Method. Baseline data are presented from MFC completers (n = 64) and dropouts (n = 60) of a national feasibility study for an innovative intervention. Measures include depression (Patient Health Questionnaire-2), anxiety (Generalized Anxiety Disorder-7), somatic symptoms (Patient Health Questionnaire-15), quality of life (World Health Organization Quality of Life-Brief), relationship satisfaction (Relationship Assessment Scale), and military care recipient number of injuries. Analysis of variance was used to evaluate differences between completers and dropouts and logistic regression was used to identify predictors of intervention completion. Results. Results indicated that MFCs with greater anxiety, χ2(3) = 10.33, p = .02; depression, χ2(1) = 8.18, p = .004; somatic symptoms, F(1, 106) = 6.26, p = .01; care recipient number of injuries, F(1, 118) = 16.31, p < .001; lower general satisfaction with treatment, F(1, 96) = 4.34, p = .04; and lower satisfaction with accessibility and convenience with treatment, F(1, 89) = 4.18, p = .04, were significantly more likely to complete the intervention. After multivariate analysis, the sole predictor of intervention completion was the number of care recipients' injuries, χ2(6) = 14.89, N = 77, p < .05. Conclusions. Overall, findings indicate that MFCs who were more "at risk" were more likely to complete the intervention. Findings present patterns of intervention completion and provide insight on areas in need of further investigation on intervention development supporting the needs of MFCs.
Introduction: Oral cancer is now a major public health problem in India. It does not only affect the patient, but also has a deep psychosocial impact on the family caregivers who are deeply involved with the cancer patient for nursing, timely medication, and consulting the doctor. Studies have found that the caregivers often suffer from depression, anxiety, and fear of losing their near and dear ones. This study aims to capture the psychosocial impact of oral cancer on the family caregivers.; Materials and Methods: This was a cross-sectional study carried out in a tertiary care hospital with the primary caregivers of those oral cancer patients who completed their treatment and came for follow-up after 2-3 months of treatment completion. The study participants were recruited till a sample size of 100 was reached. This was adequate to report proportions with an error of 10%. We have used "The Caregiver Quality of Life Index - Cancer" scale to capture the psychosocial impact of oral cancer on primary caregiver of the patient. The study was initiated after obtaining approval from the Institutional Ethics Committee. Informed written consents were obtained from all the study participants before beginning the interviews.; Results: Caregivers played an important role in the recovery of the patients. However, the strain of caregiving resulted in increased emotional stress among them. We found 56% of the family caregivers were female and 41% were male. Majority of the caregivers who accompanied the patients to hospital were the spouses. For the caregivers, the mean score for burden of the disease was found to be 60.0 (±20.2), that for disruption was 50.4 (±21.7), and for positive adaptation was 61.4 (±20.7).; Conclusion: Caregivers, who are usually invisible to the health-care team, should be recognized and their mental and physical well-being should also be given attention.
Purpose: 1) To compare levels of emotional symptoms and health-related quality of life between patients with heart failure and their family caregivers; and 2) to examine whether patients' and caregivers' emotional symptoms were associated with their own, as well as their partner's health-related quality of life. Method: In this cross-sectional study, 41 patients-caregiver dyads (78% male patients, aged 68.6 years; and 83% female caregivers, aged 65.8 years) completed all nine dimensions of the Brief Symptom Inventory and the Minnesota Living with Heart failure Questionnaire. Dyadic data were analysed for 6 sub-scales of the Brief Symptom Inventory, using the Actor–Partner Interdependence Model. Results: There were no statistically significant differences in emotional symptoms and health-related quality of life between patients with heart failure and their caregivers. Patients' and caregivers' emotional symptoms were associated with their own health-related quality of life. Caregivers' anxiety, phobic anxiety, obsession-compulsion, depression and hostility negatively influenced their partner's (i.e. the patient's) health-related quality of life. There were no partner effects of patients' emotional symptoms on the health-related quality of life of caregivers. Conclusions: The results of this study suggest that patients may be particularly vulnerable to the emotional distress, i.e. thoughts, impulses and actions of their caregivers. It may be possible to improve patients' health-related quality of life by targeting specific detrimental emotional symptoms of caregivers.
Objective: To investigate the relationship of 2 health-related quality-of-life (QOL) item banks (Emotional Suppression and Caregiver Vigilance), developed for caregivers of service members/veterans with traumatic brain injury (TBI), to caregivers' positive and negative affect.; Setting: Community.; Participants: One hundred sixty-five caregivers of service members/veterans with TBI.; Design: Retrospective database analysis.; Main Measures: TBI-CareQOL Emotional Suppression; TBI-CareQOL Caregiver Vigilance; measures of negative (Patient-Reported Outcomes Measurement Information System [PROMIS] Depression, PROMIS Anger, TBI-CareQOL Caregiver-Specific Anxiety, National Institutes of Health Toolbox [NIHTB] Perceived Stress, GAD-7) and positive affect (Neuro-QOL Positive Affect and Well-being, NIHTB Self-efficacy, NIHTB General Life Satisfaction, Family Resilience Scale for Veterans, TBI-QOL Resilience).; Results: When considered separately, linear regression showed that higher levels of Emotional Suppression and greater Caregiver Vigilance were individually associated with more negative affect and less positive affect. When considered together, the pattern of findings was generally consistent for both Emotional Suppression and Caregiver Vigilance with regard to negative affect and for Emotional Suppression with regard to positive affect. However, when considered together, Caregiver Vigilance was no longer related to positive affect.; Conclusions: Caregivers with high emotional suppression and/or vigilance are more likely to show emotional distress and less likely to have positive affect than caregivers with lower levels of emotional suppression and vigilance. A combination of education and individual counseling targeting coping with negative emotions and TBI-related problems may be beneficial.
Aim: Family caregivers have limited abilities that make them vulnerable to the care needs of patients. Therefore, it seems necessary to evaluate their caring ability. The aim of this study was to design an instrument for assessing the caring ability of family caregivers of cancer patients.; Methods: This was a sequential exploratory mixed-method study, carried out in two qualitative and quantitative phases. The concept of caring ability and its dimensions were explained using conventional content analysis in the qualitative phase. The research participants included 41 family caregivers of cancer patients and professional caregivers who were selected using purposeful sampling method until reaching data saturation. The scale items were designed using the results of the qualitative phase of the study, as well as the review of relevant literature. In the quantitative phase, the scale was validated using content and face validity, construct validity, as well as internal consistency and stability.; Results: The primary item pool was prepared in 108 items. Content validity was determined using CVR with a cut-off point (0.62), CVI with a cut-off point (0.8) and kappa coefficient (κ) (>0.75). The validity of 72 items was confirmed. Then, the overlapping items were merged and eventually the 45-item scale entered the face validity stage and five items with an impact factor < 1.5 were omitted. Results of KMO = 0.904 and Bartlett = 6184.012 (p < 0.001) justified the need for factor analysis. Scree plot indicates five factors with eigenvalues above 1 and 67.7% of the total variance, including 'Effective role play, Fatigue and Surrender, Trust, Uncertainty, and Caring ignorance'. Reliability of the 31-item instrument indicated a Cronbach's alpha coefficient of 0.93 and ICC of 0.94.; Conclusions: Caring abilities scale (CAI) of family caregivers of patients with cancer is a valid and reliable instrument that can assess caregivers' caring ability.
Background and Purpose- Persistent depression after ischemic stroke is common in stroke survivors and may be even higher in family caregivers, but few studies have examined depressive symptom levels and their predictors in patient and caregiver groups simultaneously. Methods- Stroke survivors and their family caregivers (205 dyads) were enrolled from the national REGARDS study (Reasons for Geographic and Racial Differences in Stroke) into the CARES study (Caring for Adults Recovering from the Effects of Stroke) ≈9 months after a first-time ischemic stroke. Demographically matched stroke-free dyads (N=205) were also enrolled. Participants were interviewed by telephone, and depressive symptoms were assessed with the 20-item Center for Epidemiological Studies-Depression scale. Results- Significant elevations in depressive symptoms (Ps<0.03) were observed for stroke survivors (M=8.38) and for their family caregivers (M=6.42) relative to their matched controls (Ms=5.18 and 4.62, respectively). Stroke survivors reported more symptoms of depression than their caregivers (P=0.008). No race or sex differences were found, but differential prediction of depressive symptom levels was found across patients and caregivers. Younger age and having an older caregiver were associated with more depressive symptoms in stroke survivors while being a spouse caregiver and reporting fewer positive aspects of caregiving were associated with more depressive symptoms in caregivers. The percentage of caregivers at risk for clinically significant depression was lower in this population-based sample (12%) than in previous studies of caregivers from convenience or clinical samples. Conclusions- High depressive symptom levels are common 9 months after first-time ischemic strokes for stroke survivors and family caregivers, but rates of depressive symptoms at risk for clinical depression were lower for caregivers than previously reported. Predictors of depression differ for patients and caregivers, and standards of care should incorporate family caregiving factors.
We investigated quality of life (WHOQoL-BREF), perceived stress (PSS-10), anxiety and depression (HADS-M), life satisfaction (SWLS), and serum levels of interleukin-6 (IL-6), C-reactive protein (CRP), and cortisol in family caregivers (n = 94) and professional caregivers (n = 48) of demented patients, as well as among noncaregivers (n = 30). Compared with professional caregivers, family caregivers had higher scores in HADS-M depression (P = .003) and anxiety (P = .033), lower life satisfaction (P = .04), and lower quality of life in psychological (P = .02) and social relationship (P = .03) domains. There were no differences in serum levels of IL-6, CRP, or cortisol between caregivers and control participants. In multivariable analysis, when family relationship was considered together with the time period of caregiving and results of the Mini-Mental State Examination test in care recipients (n = 118, 12.49 ± 7.99), only family relationship influenced scores in HADS-M depression (P = .004), SWLS scores (P = .011), and WHOQoL-BREF scores in psychological (P = .011) and social relationship (P = .008) domains. In conclusion, family caregivers are more stressed and have deeper depressive and anxiety disorders, lower life satisfaction, and lower quality of life than professional caregivers.
Having 2 or more relatives involved in the informal care of people with dementia is frequent worldwide. There are, however, few comparisons of primary and secondary caregivers and even fewer of those who are caring for the same person. Our study aimed to contrast these 2 experiences of caregiving. We compared 2 related samples of 61 primary and 61 secondary family caregivers of the same persons with dementia in a nonrandomized cross-sectional study. Caregivers' main outcome assessments were the Zarit Burden Interview (for subjective burden), the General Health Questionnaire (for psychological distress), and the Positive Aspects of Caregiving scale. We controlled for caregiver variables (e.g., demographics, caregiving arrangements, social support, sense of coherence) and the neuropsychiatric symptoms of dementia. Subjective burden was higher in primary than secondary caregivers (p = .013), but positive aspects of caregiving did not differ (p = .150). Psychological distress was high at clinically relevant levels in primary and secondary caregivers, without statistically significant differences between groups (p = .456). The findings demonstrate that notwithstanding the difficulties faced by primary caregivers, secondary caregivers may also experience clinically significant distress. Therefore, their needs for assistance and support should be addressed more systematically. These findings call for systemic family-focused interventions in dementia that address the support each person provides or might provide, as well as the psychological distress each person may feel.
Informal caregivers play a crucial role in supporting persons with multiple sclerosis (MS), a neurodegenerative disease resulting in progressive worsening of physical and cognitive functioning. While research extensively showed that caregiving workload can be perceived as burdensome, little attention was devoted to the relation connecting workload and caregivers' well‐being. Building on previous literature on stress and coping, the aim of this study was to test the mediational role of coping between caregivers' tasks and well‐being. A group of 680 caregivers of persons with MS (M age = 46.45; 51.2% women) was recruited in eight Italian MS centres between June 2015 and December 2016. Caregiving tasks related to basic activities of daily living (ADL), instrumental ADL, psycho‐emotional and social‐practical care were assessed through the Caregiving Tasks in MS Scale; coping strategies (avoidance, criticism and coercion, practical assistance, supportive engagement, positive reframing) were investigated through the Coping with MS Caregiving Inventory; well‐being was evaluated through the Psychological Well‐Being Scales. Analyses substantiated a multi‐mediation model including tasks in basic ADL, psycho‐emotional and social‐practical care, and the coping strategies avoidance, criticism/coercion, supportive engagement, positive reframing. Basic ADL care was negatively related to psychological well‐being through lower use of supportive engagement and positive reframing. By contrast, psycho‐emotional and social‐practical tasks were both negatively and positively related to psychological well‐being, through higher use of avoidance and criticism/coercion as well as supportive engagement and positive reframing. Findings suggest that caregiving tasks are not solely detrimental to well‐being, but they may also provide a positive contribution through the adaptive coping strategies supportive engagement and positive reframing. Findings also highlighted task‐specific areas that could be targeted in intervention in order to effectively lighten burden and promote well‐being among caregivers.
Background and Objectives: Dementia is becoming increasingly prevalent and family caregivers have been providing most of the care for persons with dementia. This caregiving is a mentally and physically demanding task. "The Berlin Inventory of Caregiver Stress-Dementia" (BICS-D) is a theory driven, multidimensional assessment which was developed as part of the Longitudinal Dementia Caregiver Stress Study (LEANDER).; Research Design and Methods: The inventory consists of 25 subscales with a total of 121 items. Analyses of the psychometric properties of the inventory were based on responses from 594 caregivers.; Results: Factor analyses confirm the multidimensionality of the inventory. The reliabilities of the subscales (Cronbach's α) are between .72 and .95. Validity and sensitivity of the inventory were also confirmed. Differing patterns of burden could be demonstrated for different relatives (partners, children, and daughters-in-law) as well as for different degrees of severity of dementia.; Discussion and Implications: The scores derived for the instrument have support for reliability and validity, and sensitivity to change. It is suitable for the differential measurement of burden experienced by different subgroups of caregivers as well as for the evaluation of interventions. The different subscales of the battery can also be used separately, depending on the study's objectives.
Objectives: Providing care for family members with Alzheimer's disease (AD) might awaken ambivalent feelings in caregivers. This topic, however, has received little research attention. Having reliable and valid scales is a first step in expanding our knowledge in this area, particularly among different cultural groups, as ambivalent emotions have been found to be dependent on culture. Thus, the aims of this study were (1) to test the reliability and validity of the Caregiving Ambivalence Scale (CAS) among Israeli Jewish and Arab caregivers of individuals with AD and (2) to examine the contribution of caregivers' ethnocultural affiliation (Jewish/Arab) to the experience of ambivalent feelings. Methods: Structured face-to-face interviews were conducted with 370 family caregivers (adult children and spouses) of elderly people with AD. Approximately half of the participants (55.3%) were Israeli Jews (79.5% female; 61.3% adult children; mean age = 65.52), and the rest (44.7%) were Israeli Arabs (87.4% female; 72% adult children; mean age = 54.28). Results: Our findings indicated that the CAS has good-to-excellent internal reliability and validity both in Hebrew and Arabic. Additionally, as expected, ethnocultural affiliation (Jewish/Arab) made a unique - although modest - contribution to the explanation of ambivalence as reflected in the CAS score, with Arab caregivers reporting significantly higher levels of ambivalent feelings than did Jewish caregivers. Conclusions: The CAS is a reliable and valid structured measure to assess ambivalent feelings among Arab and Jewish caregivers of individuals with AD in Israel. Cultural context is a unique factor in understanding their mixed emotions.
Purpose: The pressure on healthcare budgets remains high, partially due to the ageing population. Economic evaluation can be a helpful tool to inform resource allocation in publicly financed systems. Such evaluations frequently use health-related outcome measures. However, in areas such as care of older people, improving health outcomes is not necessarily the main focus of care interventions and broader outcome measures, including outcomes for those providing informal care, may be preferred when evaluating such interventions. This paper validates a recently introduced well-being measure, the ICECAP-O, in a population of informal carers for people with dementia from eight European countries.; Methods: Convergent and discriminant validity tests were performed to validate the ICECAP-O using data obtained in a sample of 451 respondents from Germany, Ireland, Italy, the Netherlands, Norway, Portugal, Sweden and the UK. These respondents completed a number of standardized questionnaires within the framework of the Actifcare project.; Results: The ICECAP-O performed well among informal carers, in terms of both convergent and discriminant validity. In the multivariate analysis, it was found to be significantly associated with the age of the person with dementia, EQ-5D-5L health problem index of the person with dementia, carer-patient relationship, care recipient CDR, carer LSNS Score, the PAI score, and Perseverance Time.; Conclusion: The ICECAP-O appears to be a valid measure of well-being in informal carers for people with dementia. The ICECAP-O may therefore be useful as an outcome measure in economic evaluations of interventions aimed at such informal carers, when these aim to improve well-being beyond health.
Context: Family satisfaction with care is an important quality indicator in palliative care.; Objectives: This study aimed to translate and validate the 10-item Family Satisfaction with End-of-Life Care (FAMCARE) tool.; Methods: Family caregivers of patients with advanced cancer were recruited. FAMCARE was translated from English to Chinese using a forward and backward translation process. Chinese-speaking caregivers were interviewed with the preliminary Chinese FAMCARE, and phrasing was edited to ensure clarity of the items. Subsequently, a baseline and follow-up survey in English and the finalized Chinese version were performed to assess psychometric properties. Cronbach's alpha (α) and intraclass correlation coefficient were used for internal consistency and test-retest reliability, respectively. Validity was assessed with Spearman's correlation coefficient (r). The Comprehensive Needs Assessment Tool-Caregiver (CNAT-C) and a one-item assessment by caregivers regarding "good-care" acted as a validity criterion. Pooled analysis of both languages and language-specific analyses were performed.; Results: There were 259 participants; 134 and 125 participants filled in the English and Chinese versions, respectively. Pooled analysis showed that the intraclass correlation coefficient of FAMCARE was 0.95; α was 0.91. There was a moderate positive correlation between the total FAMCARE scores and "good-care" (r = 0.54) and a moderate negative correlation between the total FAMCARE score and the CNAT-C "Healthcare Staff" domain (r = 0.41). There was a weak negative correlation between the total FAMCARE score and the CNAT-C domain of "family and social support" (r = -0.13). Language-specific analyses revealed similar results regarding FAMCARE's psychometric properties.; Conclusion: FAMCARE showed good reliability and validity.
Background: The experience of grief in family caregivers as they provide care for persons with dementia is often overlooked. The Marwit-Meuser-Caregiver-Grief-Inventory (MM-CGI) is one among the few scales that capture such experiences. In a recent study, MM-CGI was found to contain three subscales identifying dimensions of loss in caregivers - Personal-Sacrifice Burden (PSB), Heartfelt Sadness, Longing and Worry (HSLW), and Felt Isolation (FI). We aimed to evaluate the validity and utility of these dimensions in a multiethnic Asian population.; Methods: Family caregivers(n=394) completed MM-CGI and scales assessing caregiver burden, depression and gains. Internal-consistency reliability was examined using Cronbach's α, test-retest reliability using intraclass-correlation-coefficient, and construct validity using Pearson's correlation-coefficient. The utility of the MM-CGI dimensions was evaluated by comparing caregivers with high subscale scores across dementia stages and caregiving relationship.; Results: The three dimensions of MM-CGI exhibited adequate internal-consistency, test-retest reliability, construct validity, and known-group validity. PSB correlated most strongly with caregiver burden(r=0.78); HSLW with caregiver depression(r=0.75); and FI with caregiver burden and caregiver depression(r=0.60 respectively). Caregivers with high total grief scores tended to experience most difficulty with HSLW(90.8%), followed by PSB(75.4%) and FI(46.2%). The three dimensions also increased across the dementia stages, with FI higher in mild dementia, PSB higher in moderate dementia, and HSLW higher in severe dementia. Spousal caregivers experienced most difficulty in HSLW, whereas children caregivers experienced similar levels of difficulty across the dimensions.; Conclusions: The three dimensions of MM-CGI captured distinct aspects of caregiver grief in a multiethnic Asian population and would enable more individualized assessments and interventions for caregiver grief.
Background: Family caregivers of patients in the intensive care unit (ICU) experience impairments in the quality of life. Previous studies report that psychological quality of life improves over time, but there has been limited longitudinal research, and measurement points have differed. Factors such as age, gender, and posttraumatic stress symptoms have been found to be associated with the quality of life, but level of hope and its associations with the quality of life have not been investigated.; Objectives: The objective of this study was (1) to evaluate changes in the quality of life in family caregivers during the first year after a patient's admission to the ICU and (2) to identify associations between patients' and family caregivers' background characteristics, posttraumatic stress symptoms, hope, and quality of life.; Methods: A longitudinal study design with five measurement points was used. Family caregivers completed study questionnaires at enrolment into the study and at 1, 3, 6, and 12 months after the patient's admission to the ICU. The quality of life was measured with the 12-Item Short Form Health Survey.; Results: Family caregivers (N = 211) reported improved psychological quality of life during the first year after the patient's admission to the ICU, but it was still lower than the psychological quality of life reported in norm-based data. Being on sick leave, consulting healthcare professionals (e.g., general practitioner), and increased level of posttraumatic stress symptoms were significantly associated with psychological quality of life, whereas hope was not. Reported physical quality of life was comparable to norm-based data.; Conclusion: Family caregivers of patients in the ICU reported impairments in quality of life during the first year after the patient's admission to the ICU. Being on sick leave, consulting healthcare professionals, and reduced posttraumatic stress symptoms may improve mental quality of life.
Familial caregivers are often directly involved in treatment of patients with chronic wounds, however, less is known about their personal impairment, and specific support is lacking for these important members of the therapeutic team regarding wound care. The aim of this study was to investigate the influence of wound care provided by family members on their quality of life, and to create a suitable questionnaire to describe the affected personal aspects. A five-part questionnaire, named ELWA, was created by the authors and answered by 30 familial caregivers of 30 respective patients with chronic leg ulcers. One third of the caregivers reported receiving no medical advice about detailed wound care at all. A lack of information regarding details of the disease correlated with personal strain. Additional costs, anxiety, frustration, and reduced spare-time activities were among the top-rated factors affecting quality of life of family members. The results from this newly created questionnaire point out the needs for familial caregivers of patients with chronic wounds and may help to establish individual support. Implementation of clinical treatment strategies is planned through multicentre application.
Background and aims: Liver transplantation provides an opportunity of survival for patients with liver failure; however, this procedure is known to be psychologically and physically fatiguing for patients and their informal caregivers. The aim of this study was to investigate how perceived social support and the distribution of dependency were associated with the psychological wellbeing of patients waiting for liver transplantation and their caregivers, as a dyad. Methods: The present was a cross-sectional study. Ninety-five participants were recruited at a hospital in Northern Italy, during the psychological evaluation for inclusion in the transplantation list: 51 patients (19 with alcohol-related illness) and 44 family caregivers. Both patients and caregivers filled in a Symptom Checklist and Kelly's Dependency Grids. Patients also compiled the Medical Outcome Study Social-Support Survey, and caregivers compiled the Family Strain Questionnaire Short-Form. Results: Caregivers reported important levels of strain and strongly related to a worsening of their own and patients' symptoms. Patients with alcohol-related pathologies had a narrower social network, which corresponded to an increase in family strain. On the sample as a whole, regression analyses showed that perceived social support and dependency measures did not predict patients' and caregivers' symptoms. Nevertheless, cluster analysis identified a group of caregivers who distributed their dependency more and experienced lower levels of depression, anxiety, and strain. Conclusions: These results suggest the usefulness of a dyadic approach in the research, prevention, and care of liver diseases. A deeper comprehension of the functioning of dyads will help practitioners in the identification of situations at risk.
Although family satisfaction is recognized as a critical indicator of quality care for persons with serious illness, Spanish-language measures are limited. The study aims were to develop a Spanish translation of the short-form Family Satisfaction With End-of-Life Care (FAMCARE), investigate its psychometric properties in Hispanic caregivers to patients with Alzheimer's disease and related dementias (ADRD; N = 317; 209 interviewed in Spanish), and add parameters to an existing item bank. Based on factor analyses, the measure was found to be essentially unidimensional. Reliabilities from a graded item response theory model were high; the average estimate was 0.93 for the total and Spanish-language subsample. Discrimination parameters were high, and the model fit adequate. This is the first study to examine the performance of the short-form FAMCARE measure among Hispanics and caregivers to patients with ADRD. The short-form measure can be recommended for Hispanics and caregivers to patients with ADRD.
Background: This study prospectively evaluated distress, depressive and anxiety symptoms as well as associated factors in family caregivers (FC) of advanced cancer patients at initiation of specialist inpatient palliative care.; Methods: Within 72 h after the patient's first admission, FCs were asked to complete German versions of the Distress Thermometer, Generalized Anxiety Disorder 7-item scale (GAD-7), Patient Health Questionnaire depression module 9-item scale (PHQ-9) for outcome measure. Multivariate logistic regression analyses were used to identify associated factors.; Results: In 232 FCs (62% spouses/partners), mean level of distress was 7.9 (SD 1.8; range, 2-10) with 95% presenting clinically relevant distress levels. Most frequent problems were sadness (91%), sorrows (90%), anxiety (78%), exhaustion (77%) and sleep disturbances (73%). Prevalence rates of moderate to severe anxiety and depressive symptoms were 47 and 39%, respectively. Only 25% of FCs had used at least one source of support previously. In multivariate regression analysis, being female (OR 2.525), spouse/partner (OR 2.714), exhaustion (OR 10.267), and worse palliative care outcome ratings (OR 1.084) increased the likelihood for moderate to severe anxiety symptom levels. Being female (OR 3.302), low socio-economic status (OR 6.772), prior patient care other than home-based care (OR 0.399), exhaustion (OR 3.068), sleep disturbances (OR 4.183), and worse palliative care outcome ratings (OR 1.100) were associated with moderate to severe depressive symptom levels.; Conclusions: FCs of patients presenting with indication for specialist palliative care suffer from high distress and relevant depressive and anxiety symptoms, indicating the high need of psychological support not only for patients, but also their FCs. Several socio-demographic and care-related risk-factors influence mental burden of FCs and should be in professional caregivers' focus in daily clinical practice.
The Modified Caregiver Strain Index is a widely used tool to screen for caregiver strain in family caregivers. This study presents the Portuguese version of the Modified Caregiver Strain Index and explores its psychometric properties in a sample of 347 informal caregivers of older dependent individuals. Factor analysis revealed a two-factor structure and indicated satisfactory internal consistency. Criterion-related validity was supported by positive significant correlations with the emotional health of the caregiver (psychological distress). The findings show evidence of reliability and validity of the Portuguese version of the Modified Caregiver Strain Index encouraging its use in clinical and research fields.
Purpose: The level of support needed for adaptive functioning and behavioral problems of individuals with intellectual disabilities (ID) can be a source of stress for caregivers. The aim of this study was to explore the moderating role of caregivers' age on the associations between these stressors and quality of life (QoL) of the family caregivers. As these sources of stress in people with ID can coexist, the triple interaction between stressors and age was also examined. Methods: 208 relatives (mean age = 50.98 years, SD = 12.86) of people with ID participated in the research. Participants answered a questionnaire with sociodemographic variables, measures of stressors (level of support for adaptive functioning of the people with ID and behavioral problems) and measures of QoL (WHOQOL-BREF). Results: The association between the level of support needed for adaptive functioning and lower QoL was only significant among older relatives, whereas the association between behavioral problems and lower QoL was only significant among younger relatives. A three-way interaction between behavioral problems, level of support needed, and age indicated that the association between the level of support for adaptive functioning and QoL in older relatives was greater when there were higher levels of behavioral problems. Conclusions: The role of caregivers' age in their QoL differs depending on the nature of the stressor, and an accumulation of stressors can have a particularly negative impact on older caregivers. Interventions should be adapted for caregivers of different ages and take into account the particular sources of stress they have to cope with.
Background and Objectives: A 2008 European consensus on research outcome measures in dementia care concluded that measurement of carer quality of life (QoL) was limited. Three systematic reviews (2012, 2017, and 2018) of dementia carer outcome measures found existing instruments wanting. In 2017, recommendations were published for developing reliable measurement tools of carers' needs for research and clinical application. The aim of this study was to develop a new instrument to measure the QoL of dementia carers (family/friends).; Methods: Items were generated directly from carers following an inductive needs-led approach. Carers (n = 566) from 22 English and Welsh locations then completed the items and comparator measures at three time points. Rasch, factor, and psychometric (reliability, validity, responsiveness, and minimally important differences [MIDs]) analyses were undertaken.; Results: Following factor analysis, the pool of 70 items was refined to three independent scales: primary SIDECAR-D (direct impact of caring upon carer QOL, 18 items), secondary SIDECAR-I (indirect impact, 10 items), and SIDECAR-S (support and information, 11 items). All three scales satisfy Rasch model assumptions. SIDECAR-D, I, S psychometrics: reliability (internal ≥ .70; test-retest ≥ .85); convergent validity (as hypothesized); responsiveness (effect sizes: D: moderate; I and S: small); MIDs (D = 9/100, I = 10/100, S = 11/100).; Discussion and Implications: SIDECAR scales demonstrate robust measurement properties, meeting COSMIN quality standards for study design and psychometrics. SIDECAR provides a theoretically based needs-led QoL profile specifically for dementia carers. SIDECAR is free for use in public health, social care, and voluntary sector services, and not-for-profit organizations.
Objectives: The aim of the present study is to validate the Positive Aspects of Caregiving (PAC) scale in Greek informal family caregivers of patients with dementia, in order to assess its psychometric properties. Methods: Two hundred and forty-seven dementia caregivers completed the Greek version of the PAC (G-PAC) scale in correlation with the following psychometric tools, the Beck Depression Scale, the Zarit Burden Interview (ZBI), the Beck Anxiety Inventory (BAI), the Quality of Life-AD (QoL-AD), the Perceived Stress Scale (PSS), and the Neuropsychiatric Inventory (NPI). Caregivers were included in the study after they had been initially informed of its purpose and completed the informed consent. Results: The Principal Component Analysis (PCA) extracted two factors for the G-PAC, which is also in agreement with the original version, which is Enriching Life and Affirming Self. Concurrent validity suggested significant correlations between G-PAC and behavioral and psychological symptoms of dementia and with perceived stress. In regard to the reliability measures, the results showed that the G-PAC scale has very good internal reliability and high levels of test-retest reliability. Conclusions: The scale is a both valid and reliable tool, and therefore it can be used to assess the positive aspects of caregiving in dementia caregivers. Clinical implications: The development of positive psychology measures in dementia care can be regarded as the cornerstone of the psychotherapeutic interventions addressed to caregivers, and therefore helping them to adapt better in their caregiving role.
Aim: This study aimed to develop a “family caregiver needs-assessment scale for end-of-life care for senility at home” (FADE) and examine its reliability and validity. Method: A draft item pool was developed based on a literature review, and simplified to 30 items in four domains. Next, the item pool was reviewed by four visiting nurses and four researchers and refined to 15 items. A cross-sectional study was then conducted using a self-reported questionnaire. Questionnaires were sent to 2703 visiting nurses. The survey questions included participants’ basic demographic information, the importance of each item according to a modified scale, basic demographics for cases of death by senility at home, satisfaction with each item of the modified scale in an example case, and assessment of the case using the Japanese version of the Support Team Assessment Schedule (STAS-J). Internal consistency was assessed using Cronbach’s alpha. Construct validity was confirmed using confirmatory factor analysis, and correlation between the new scale and the STAS-J was used to assess criterion-related validity. Results: In total, 461 visiting nurses provided valid responses. The exploratory and confirmatory factor analyses identified 12 items from two factors: “Needs for adaptation to senility bereavement” and “Needs for essential skills in supporting a dignified death by senility.” The final model showed appropriate index values: standardized root mean residual = 0.057, Tucker–Lewis index = 0.920, Akaike information criterion = 191.6, and Bayesian information criterion = 298.2. Cronbach’s alpha for the entire scale was 0.908, and was above 0.840 for each factor. The correlation coefficient between STAS-J and the entire scale was 0.259–0.427 (p<0.001). Conclusions: The FADE scale showed acceptable internal consistency and concurrent validity. The scale can help clarify issues and desires that present themselves at home related to adaptation to senility bereavement and essential skills in supporting a dignified death by senility. Addressing these issues and desires is expected to reduce caregivers’ anxiety and burden, and means the older adults under their care may be respected and enabled to live with dignity and peace.
Background and Objectives Delirium creates distinct emotional distress in patients and family caregivers, yet there are limited tools to assess the experience. Our objective was to develop separate patient and family caregiver delirium burden instruments and to test their content and construct validity. Research Design and Methods Two hundred forty-seven patients and 213 family caregivers were selected from an ongoing prospective cohort of medical-surgical admissions aged ≥70 years old. New patient and family caregiver delirium burden instruments were developed and used to measure the subjective experiences of in-hospital delirium. Delirium and delirium severity were measured by the Confusion Assessment Method (CAM) and CAM-Severity (long form). Results Both Delirium Burden (DEL-B) instruments consist of eight questions and are measured on a 0 – 40 point scale. Final questions had good clarity and relevancy, as rated by the expert panel, and good internal consistency (Cronbach's α =.82–.86). In the cohort validation, Patient DEL-B (DEL-B-P) was 5.1 points higher and Family Caregiver DEL-B (DEL-B-C) was 5.8 points higher, on average, for patients who developed delirium compared to those who did not (p <.001). Test–retest reliability of DEL-B-C at baseline and 1 month was strong (correlation =.73). Delirium severity was mildly-moderately correlated with DEL-B-P (correlation =.34) and DEL-B-C (correlation =.26), suggesting contribution of other factors. Discussion and Implications We created instruments to reliably measure and evaluate the burden of delirium for patients and their family caregivers. Although additional validation is indicated, these instruments provide a key first step toward measuring and improving the subjective experience of delirium for patients and their families.
Objective: To analyze the association between the caring ability and the burden, stress and coping of family caregivers of people in cancer treatment. Method: A crosssectional study with 132 family caregivers. The following instruments were applied: a characterization instrument, the Caring Ability Inventory, the Zarit Burden Interview, the Perceived Stress Scale, and the Brief COPE. The Spearman Correlation was used with significance <5%. Results: There were significant and positive correlations between total caring ability and: burden - interpersonal relationship (p=0.03); stress (p=0.02) and maladaptive coping (p=0.00); and inversely proportional correlations with problem-focused coping (p=0.03). The courage had inversely proportional correlation with: self-efficacy (p=0.03), interpersonal relationship (p=0.00), stress (p=0.04) and maladaptive coping (p=0.00). The knowledge had significant and positive correlation with problem-focused coping (p=0.00), adaptive coping (p=0.01), and inverse correlation with stress (p=0.02). Conclusion: The level of caring ability correlates with levels of stress and burden, and with the type of coping strategy used by family caregivers.
Background: There is increasing interest in assessing the effects of interventions on older people, people with long-term conditions and their informal carers for use in economic evaluation. The Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer) is a measure that specifically assesses the impact of social care services on informal carers. To date, the ASCOT-Carer has not been preference-weighted. Objectives: To estimate preference-based index values for the English version of the ASCOT-Carer from the general population in England. Methods: The ASCOT-Carer consists of 7 domains, each reflecting aspects of social care-related quality of life in informal carers. Preferences for the ASCOT-Carer social care-related quality of life states were estimated using a best-worst scaling exercise in an online survey. The survey was administered to a sample of the general adult population in England (n = 1000). Participants were asked to put themselves into the hypothetical state of being an informal carer and indicate which attribute they thought was the best (first and second) and worst (first and second) from a profile list of 7 attributes reflecting the 7 domains, each ranging at a different level (1-4). Multinomial logit regression was used to analyze the data and estimate preference weights for the ASCOT-Carer measure. Results: The most valued aspect by English participants was the 'occupation' attribute at its highest level. Results further showed participants rated having no control over their daily life as the lowest attribute-level of all those presented. The position of the 7 attributes influenced participants' best and worst choices, and there was evidence of both scale and taste heterogeneity on preferences. Conclusion: This study has established a set of preference-based index values for the ASCOT-Carer in England derived from the best-worst scaling exercise that can be used for economic evaluation of interventions on older individuals and their informal carers.
Purpose/background: Accumulating evidence shows that bereaved family caregivers report elevated distress for an extended period, which compromises their quality of life. A first step in the development of programs to enhance bereaved caregivers' quality of life should be determining the needs they experience to manage the loss, and the needs that are not being satisfied. Thus, this study aimed to develop a new measure to assess unmet needs among bereaved family caregivers.; Method: The 20-item Needs Assessment of Family Caregivers-Bereaved to Cancer measure was developed and validated with bereaved cancer caregivers 5 (n = 159) and 8 (n = 194) years after the initial cancer diagnosis of the index patient, when stress in providing care to the patient was assessed.; Results: Exploratory factor analysis yielded two primary factors: unmet needs for reintegration and unmet needs for managing the loss. Bereaved caregivers who were younger and ethnic minority, and who had greater earlier perceived stress of caregiving, reported their needs were more poorly met (t > 2.33, p < .05). The extent to which bereaved caregivers' needs to manage the loss were not perceived as being met was a consistent and strong predictor of poor adjustment to bereavement at both 5- and 8-year marks (t > 1.96, p < .05), beyond the effects of a host of demographic and earlier caregiving characteristics.; Conclusion: Findings support the validity of the Needs Assessment of Family Caregivers-Bereaved to Cancer and suggest that interventions to help bereaved caregivers manage the loss by assisting their transition to re-engagement in daily and social activities will benefit caregivers by mitigating bereavement-related distress years after the loss.
Background: The purpose of the present study was to determine a statistically valid cutoff score for the Zarit Burden Interview (ZBI) in order to identify family caregivers at risk for depression and anxiety to guide for further assessment and future intervention. Methods: The ZBI, the Patient Health Questionnaire (PHQ), and the Generalized Anxiety Disorder Scale (GAD) were administered to a representative community sample of 327 family caregivers of schizophrenia individuals. A ZBI cutoff score was determined using three different statistical methods: tree-based modeling, K-means clustering technique and linear regression, followed by contingency analysis and receiver operating characteristic (ROC) curve to compare between depression and anxiety scale scores with the ZBI cutoff. Results: Findings suggest that a cutoff score of 48 in ZBI has significant predictive validity for identifying caregivers at risk for both depression and anxiety. A ZBI cutoff of 48 showed sensitivity of 73% for PHQ and 70% for GAD, specificity of 80% for PHQ and 79% for GAD, PPV (positive predictive value) of 75% for PHQ and 73% for GAD, NPV (negative predictive value) of 78% for PHQ and 76% for GAD. Conclusions: This cutoff score would enable health care providers to assess family caregivers at risk and provide necessary interventions to improve their quality of life in this important role.
Background Recent studies indicate that informal caregivers provide support to family members who are undergoing haemodialysis although the amount and type of activities provided and the burden of this is not well‐known. Objectives To analyse the burden and support activities of informal caregivers caring for adults receiving haemodialysis. Methods A cross‐sectional study recruited 178 adult informal caregivers (family members or close friends) of patients who had been undergoing haemodialysis for more than three months. Caregiver burden was measured by the Zarit Caregiver Burden Scale (ZCBS). Difficulty and time‐spent on caring tasks were assessed using the Oberst Caregiver Burden Scale (OCBS). Demographic characteristics were also collected. Results Most informal caregivers were female (55.6%) between 30 and 60 years of age (66%) and were a spouse of the person receiving haemodialysis. Overall, informal caregivers reported a high level of burden in caring (M = 40.15, standard deviation [SD] = 10.46) with 80.9% identifying the level as severe. However, the caring activities were perceived as slightly difficult (M = 24.5, SD = 8.81) and not requiring much time (M = 29.47, SD = 8.75). Predictors of greater informal caregiver burden were having their own health problems, greater time required to provide care, and doing more difficult tasks (R2 = 0.43, p < 0.01). Conclusion While the caregiving activities were not reported to take much time, there was a high level of burden on informal caregivers. Renal nurses are ideally placed to assess for caregiver burden and to provide education and support to them.
The objective of this study was to analyze the psychometric properties of the Spanish version of the Eysenck Personality Questionnaire Revised-Abbreviated (EPQR-A) in informal caregivers. Trained, independent evaluators administered the EPQR-A and evaluated informal caregivers' depressive symptoms, automatic negative thoughts, self-efficacy, and pleasant social contacts, and clinical experts assessed major depressive episode in 592 caregivers (87.2% women, mean age 55.4 years). Women scored significantly higher on Neuroticism than men (p < .001). Subscale internal consistencies were .77 for Neuroticism, .75 for Extraversion, .47 for Sincerity; and .24 for Psychoticism. These four factors accounted for 38.1% of total variance. However, a three-factor model (excluding Psychoticism) better fit the data. Neuroticism was significantly, inversely correlated with both self-efficacy (r = -.35) and pleasant social contacts (r = -.22), and positively correlated with both depressive symptoms (r = .59) and negative thoughts (r = .53). Extraversion was significantly, inversely correlated with both depressive symptoms (r = -.22) and negative thoughts (r = -.22), and positively correlated with both self-efficacy (r = .36) and pleasant social contacts (r = .16). A cutoff score of 4 on Neuroticism suitably discriminated between depressed and non-depressed informal caregivers (sensitivity = 68.1%, specificity = 79.9%).
Background and Objectives This article reviews an instrument used in cross-national research with dementia family caregivers-the Revised Scale for Caregiving Self-Efficacy (RSCSE). Although the RSCSE has been translated into multiple languages, few studies have examined scale performance across samples. We examine congruence of psychometric, reliability, and validity data to inform research and practice. Methods We conducted citation searches using Scopus, Google Scholar, Web of Science, and PsycINFO. Identified dementia caregiving studies cited the original RSCSE article and described results of English and/or non-English translations of the scale. Results Peer-reviewed published studies (N = 58) of dementia family caregivers included data for Arabic, Chinese, English, French, Italian, and Spanish translations of the RSCSE; the majority (72%) reported use of non-English translations. Studies utilizing confirmatory factor analytic approaches reported findings consistent with the original development study. Internal consistency, convergent/discriminant validity, and criterion validity indices were congruent across diverse cross-national caregiving samples assessed with different translations. Data supported the RSCSE's sensitivity to change following specific psychosocial caregiving interventions. Discussion The reliability and validity of different translations of the RSCSE support continued use with cross-national samples of dementia family caregivers. Limitations of the scale point to the need for further self-efficacy measurement development within caregiving domains. Consistent with Bandura's discussion of social cognitive theory in cultural contexts, personal agency for caregiving challenges remains generalizable to cross-national populations. This review discusses the implications for cross-cultural research and practice.
Objective This study explored the association between healthcare needs and quality of life (QoL) of Korean cancer family caregivers according to the time lapse after cancer diagnosis. Methods Self‐administered comprehensive needs assessment tool and EuroQol‐5‐dimension index for 686 cancer family caregivers were classified into four groups according to time lapse after cancer diagnosis (≤12, 13–36, 37–60,>60 months). We estimated the association between unmet needs and QoL by multiple linear regression analyses after adjusting for age, sex, cancer site and caregivers’ comorbid conditions. Results Female or elder caregivers had lower QoL and higher unmet needs. The highest unmet needs existed in healthcare staff domain followed by information/education domain persistently along all periods. QoL of caregivers was significantly associated with family/social support and health/psychological problem during the time lapse of ≤12 months as well as >60 months. Practical support was consistently associated with QoL across all time lapses. Religious/spiritual support and hospital facilities and services showed significant association with QoL only in ≤12 months and >60 months respectively. Conclusions The QoL of Korean cancer family caregivers was differentially associated with their unmet needs according to the time lapse after cancer diagnosis and by specific domains of needs.
Objective: To test the effects of Life Enhancing Activities for Family Caregivers (LEAF), a 6-week positive emotion regulation intervention, on outcomes of positive emotion, depression, anxiety, and physical health as measured by the Patient-Reported Outcomes Measurement Information System® (PROMIS®). Method: A randomized controlled trial (N 170) comparing LEAF (N 86) to an emotion reporting/waitlist condition (N 84) in dementia caregivers. LEAF was individually delivered online by trained facilitators. Participants in the control condition completed daily online emotion reports and then crossed over into the intervention condition after 6 weeks. The study was registered with Clinicaltrials. gov (NCT01825681) and funded by R01NR014435. Results: Analyses of difference in change from baseline to 6 weeks demonstrated significantly greater decreases in PROMIS® depression (d <.25; p.02) and Quality of Life in Neurological Disorders (NeuroQOL) anxiety (d <.33; p-.01), as well as improvements in PROMIS® physical health (d.24; p.02) in the intervention condition compared to the emotion reporting/waitlist control. The intervention also showed greater improvements in positive emotion (d.58; p-.01) and positive aspects of caregiving (d.36; p-.01). Increases in positive emotion significantly mediated the effect of LEAF on depression over time. Conclusions: This randomized controlled trial of the online-facilitated positive emotion regulation intervention in dementia caregivers demonstrated small to medium effect sizes on caregiver well-being and shows promise for remotely delivered programs to improve psychological well-being in caregivers of people with dementia and other chronic illnesses.
Purpose: This study aimed to test the validity and reliability of the five-level EuroQol five-dimensional (EQ-5D-5 L) instrument in family caregivers (FCs) of leukemia patients in Heilongjiang of China. Methods: A cross-sectional survey was conducted on 298 family caregivers (FCs) of leukemia patients from three major cancer centers in the capital city of Heilongjiang province of China. Their dimensional scores of the EQ-5D-5 L were compared with those of the WHOQOL-BREF to test the convergent validity (constructs measuring the same concept) and divergent validity (constructs measuring different concepts) of the EQ-5D-5 L. Repeated surveys were conducted on 271 participants to determine the test-retest reliability of the EQ-5D-5 L. Results: The four physical dimensions (mobility, self-care, usual activities, and pain/discomfort) of the EQ-5D-5 L had moderate or high correlations with the physical health domain of the WHOQOL-BREF, with a correlation coefficient (r) ranging from 0.459 to 0.559. The anxiety/depression dimension of the EQ-5D-5 L had a high correlation (r = 0.667) with the psychological domain of the WHOQOL-BREF. By contrast, lower but still significant physical-to-psychological correlations were found between the two instruments (r ranging from 0.219 to 0.396). In addition, the EQ-5D-5 L dimensional scores showed no or weak correlations with the environment and social domains of the WHOQOL-BREF (r ranging from 0.016 to 0.207). High test-retest reliability (> 0.7) was evident. Conclusion: The Chinese version of the EQ-5D-5 L has satisfactory reliability and validity in FCs of leukemia patients. It can be used to elicit utility of health-related quality of life in FCs of leukemia.
Objectives: Informal caregivers of veterans are providing care for a population whose specialized care needs require increased investments on the part of caregivers and for longer durations. Empirical evidence shows negative mental health effects on these caregivers at rates that outpace those seen in caregivers in the general population. With a growing need and limited resources, effective interventions are needed to improve mental health outcomes in this special population of caregivers. Methods: This pilot, randomized control trial tested the effectiveness of a mindfulness-based intervention at improving perceived stress, depressive symptoms, anxiety, and worry compared to waitlist controls in a sample of 23 caregivers of veterans. Results: The Mann-Whitney U tests used to determine whether groups differed in change scores (post minus pre) indicated that there were significant differences between the mindfulness and waitlist control group in perceived stress (U = 21.5, p =.006, r = .57), anxiety (U = 24.0, p =.009, r = .54), and worry (U = 29.5, p =.024, r = .47). Results from the Wilcoxon signed-rank tests indicated that caregivers in the mindfulness group reported a significant reduction in perceived stress (Z = − 2.50, p =.013, r =.75) and anxiety (Z = − 2.81, p =.005, r =.85), whereas the waitlist control group reported higher mean symptoms at the end of the intervention period. Conclusions: Given these promising results, policymakers, health practitioners, and veteran-related programs should increase efforts to provide caregivers of veterans with mindfulness-based interventions to improve mental health outcomes.
Objectives: As a degenerative disease, the progression of dementia needs continued care provision and poses both psychological and financial burden for family caregivers of persons with dementia (PWD). This study seeks to compare predictors of care costs and caregiver burden, and to identify modifiable factors that could alleviate the burden faced by dementia caregivers. Methods: This study interviewed 231 PWD-caregiver dyads in a dementia clinic at a teaching hospital in southern Taiwan in 2013. A follow-up study was conducted a year later, and 167 dyads completed the second interview. Data collected included PWD characteristics, caregiver characteristics, relationship to PWD, and social support to caregivers. Caregiver burden was measured with the Zarit Burden Interview instrument. The association between each predictor variable and cost of care and caregiver burden scores was examined using linear mixed models. Results: Predictors of care costs were found to be different from predictors of caregiver burden: functional declines measured by Katz's activities of daily living (ADL) scale were associated with total cost as compared to behavioral disturbance measured by Neuropsychiatric Inventory (NPI), which showed no impact on care costs. However, NPI was a significant predictor of caregiver burden. Caregivers who were better-off financially also reported significantly lower caregiver burden. Conclusions: Since predictors of care costs were different from the predictors of caregiver burden, providing training to caregivers in addressing PWD's behavioral disturbance and proving financial assistance to low income caregivers could be effective in reducing caregiver burden.
Objectives: A limitation of adult day service (ADS) research is that there remains little understanding of how these community-based long-term care programs operate to benefit clients or family caregivers (i.e. the process of ADS use). The purpose of this study was to validate the ‘ADS Process and Use Measures’ (APUM) which were developed to assess such mechanisms. Method: Participant observation and semi-structured interviews in two ADS settings resulted in qualitative data to inform a conceptual model, subscales, and Likert-scale items. Three experts in ADS research reviewed the initial 129-item version of the APUM to establish content validity, and 27 family caregivers of current or prior ADS clients provided feedback on face validity of a subsequent 58-item version. Results: Principal components and confirmatory factor analyses on a sample of 269 family members of ADS clients recruited from 90 programs throughout the U.S. established a measure featuring 5 domains, 12 reliable subscales, and 49 items. Analysis of discriminant and convergent validity found that various subscales from four of the domains (Why ADS is Used, Events Prior to Use, Why ADS Does Not Work, and Pathways to Benefits) were significantly associated (p < 0.05) with family caregiver distress and ADS client quality of life variables. Conclusion: The ADS Process and Use Measures effectively assess mechanisms of program benefit and could help to enhance the overall quality of these critical community-based long-term care options for older persons and their families.
BACKGROUND: Family caregivers play an important role in the care of patients receiving palliative care, yet little is known about the financial impact of family caregiving in this context. A lack of existing validated tools for collecting data on the costs of family caregiving in palliative care has resulted in a weak and limited evidence base. The aim of the study was to describe the development and initial piloting of a new survey tool which captures data on the costs of family caregiving in palliative care: the Costs of Family Caregiving (COFAC) questionnaire. METHODS: Development and piloting of the COFAC questionnaire involved 2 phases: (1) questionnaire development based on published evidence and cognitive interviews with service users; and (2) validity testing involving expert review and piloting with bereaved caregivers. RESULTS: Questionnaire content was generated from previously published research and related to work-related costs, carer time costs and out-of-pocket expenses. 2 group cognitive interviews with 15 service users refined content of the draft questionnaire. Face validity was established through expert review with 9 academics and clinicians. Piloting with 8 bereaved caregivers established acceptability and feasibility of administration. CONCLUSIONS: The COFAC tool has been shown to be valid, acceptable to bereaved caregivers and feasible to administer. The COFAC questionnaire is recommended for economic research in palliative care which seeks to capture data from a broad societal perspective which includes family caregiver costs.
Background: Families of patients with organ transplants experience many problems, both with the onset of illness and during the hospitalisation of their relative for an organ transplant. The healthcare providers try their best to give high-quality care to patients. However, they neglect quality of life and psychosocial needs of family caregivers. Aims: This study aimed to assess the psychosocial needs and quality of life of the family caregivers of post-transplant patients and the relationship between these two variables. Methods: This descriptive correlational study was conducted on liver, kidney and bone marrow transplant wards in the largest transplant centre affiliated with a university of medical science in south-eastern Iran. The sample included 230 family caregivers of post-transplant patients, who were selected using quota sampling. Data were collected using the 45-item questionnaire of psychosocial needs (the Critical Care Family Needs Inventory) with five dimensions (assurance, comfort, information, proximity and support), and the Short Form-36 Quality of Life questionnaire with eight scales (physical functioning, physical problems, emotional problems, social functioning, pain, vitality, mental health and perception of health). In the Critical Care Family Needs Inventory, 1 indicates not important and 4 very important. In the Short Form-36 Quality of Life questionaire, 0 indicates the worst health and 100 the best health. Results: The participants rated the mean of their psychosocial needs as important (3.18 ± 0.27). Also, the mean of quality of life of participants was at an undesirable level (45.17 ± 92.66). The psychosocial needs of the caregivers showed a poor, inverse significant relationship with their quality of life (r = −0.16, p = 0.01). Conclusion: The results showed that with increasing psychosocial needs of family caregivers of post-transplant patients, their quality of life declines. Healthcare providers should implement developed plans and appropriate strategies to fulfil psychosocial needs and improve the quality of life of family caregivers of these patients.
BACKGROUND: Validated instruments are needed to assess the delivery of patient-centred care (PCC) to people with intellectual disabilities (PWIDs) needing 24-h care in residential settings. Eight dimensions of PCC have been identified: taking patients' preferences into account; access to care; emotional support; physical comfort; information and education; involvement of family and friends; coordination of care; and continuity and secure transition. Objective of this study is to validate an instrument to assess these eight PCC dimensions among informal caregivers of PWIDs in residential settings (institutional settings as well as group homes in the community). The original 24-item instrument was developed and validated among professionals providing care to PWIDs. METHODS: This study was conducted in a disability care centre in the Netherlands. All informal caregivers of PWIDs living in institutional settings or group homes in the community in need of 24-h care were invited to participate (n = 941). The response rate was 31% (n = 289). We tested the instrument using structural equation modelling, and examined its validity and reliability. RESULTS: Confirmatory factor analyses revealed good indices of fit and overall internal consistency, as represented by Cronbach's alpha values. All eight dimensions of PCC were related positively to satisfaction with care (all p ≤ 0.001). As expected, informal caregivers were less critical of PCC and its underlying dimensions, except for information and education, than were professionals working in the same disability care centre. CONCLUSIONS: The psychometric properties of the 24-item PCC instrument for informal caregivers (PCC-IC) were satisfactory, indicating that the PCC-IC is valid and reliable for the assessment of the eight dimensions of PCC among informal caregivers of PWIDs in residential settings.
Objectives: Caregivers of hospitalized older adults experience elevated levels of stress and are at risk of poor health outcomes. There is a lack of screening tools based on self-reported caregiver variables incorporating both protective and risk factors, for early identification of at-risk caregivers. This study reports the development of a caregiver-centric screening tool to identify risk of depression at admission and predicts 3-month risk of depression and quality of life amongst caregivers of older adults with an unplanned admission. Design, Setting and Participants: This prospective cohort study was conducted in the medical wards of a tertiary-care hospital from July 2015 to May 2017. We recruited family caregivers of patients aged 65 years and above who fulfilled the following criteria: a) unplanned admission, b) not residing in nursing homes; and c) requiring assistance in activities of daily living. Measurements: We examined 11 candidate caregiver variables (mastery, burden and nine demographic variables). Risk of depression (score ≥8 on Hospital Anxiety and Depression Scale (HADS-D) depression subscale) was the primary outcome, and was assessed during the index admission. Logistic regression models were used to identify risk factors and risk scores (weights). The total risk scores were then stratified into three risk levels. Predictive validity of the screening tool was assessed using 3-months post-discharge risk of depression and health-related quality of life (HRQoL). Results: The study included 274 caregiver-patient dyads. The mean (SD) age of the caregivers was 59 (10) years with 33.6% caregivers screening positive for risk of depression. The final model comprised three caregiver variables: mastery, burden and education. The total risk scores ranged from 0 to 6 and showed good discrimination (AUC:0.82, 95% CI: 0.77 to 0.87). Caregivers were classified into low-risk (0–1 points), intermediate-risk (2–4 points), and high-risk (5–6 points) groups, with corresponding rates of risk of depression (HADS-D≥8) of 10.7%, 44.6% and 73.3%, during admission. Relative risk rates of the intermediate- and high-risk group using the low-risk group as reference were 4.16 and 6.84 respectively. At 3-months post-discharge, the rates of caregivers at risk of depression or having poor HRQoL also increased corresponding to the three risk levels as per baseline, supporting the predictive validity of the tool. Conclusions/Implications: The caregiver-centric tool is a novel, practical, self-administered, relatively brief caregiver-centric instrument that can be used for rapid screening and stratification of caregivers at risk of depression. Uniquely, the tool comprised of assessment of protective factor (mastery) in addition to risk factors to provide a holistic assessment of the caregiver. It can be incorporated as part of older adults’ admission evaluation so that prompt intervention can be rendered to their at-risk caregivers.
A cross-sectional study design involving a total of 230 participants, recruited through Alzheimer's Disease Foundation Malaysia (ADFM), was adopted to access and correlate caregiver strain index (CSI) and resilience (RES) levels of the AD caregivers with various patients’ and caregivers’ factors. Findings revealed that 77.7% of caregivers had a high level of stress, and there was a significant negative correlation between RES and CSI (P < 0.001). Care recipients’ physical function was negatively associated with CSI level. Caregivers’ gender and employment status were not directly associated with CSI but were significantly associated with caregivers’ RES level. Among the mediator variables, years of care was related to increase CSI and adult-children of AD patients experienced a higher level of caregiver strain compared to the other caregiver groups (P = 0.025). Thus, interventions to improve the family caregivers’ RES level, and support for AD patients will be helpful in lowering the strains of AD caregivers.
Objective: The purpose of this study was to examine the most effective and available English and Spanish language caregiver assessments for providers and caregivers. Methods: Assessments were included if they screened for caregiving-related concerns, including stress, depression, and caregiving burden and could be administered directly to caregivers in person or online. Results: Eighteen assessments are designed to assess caregiver burden, distress, depression, and grief. Six did not have psychometric data to support efficacy but are widely used in clinical and research settings. Six were validated in Spanish, and one other is available in Spanish but not validated. Conclusion: As many as 80% of care recipients are cared for in the home by family members who act as informal caregivers. Caregivers of persons with dementia may experience depression symptoms, high caregiver burden, and feelings of being constrained. Due to the lack of psychometric evidence available, the validity of some assessments is questionable.
BACKGROUND AND PURPOSE: The informal care demands of primary malignant brain tumor (PMBT) patients include unique issues associated with neurological and cognitive symptoms. Existing caregiver needs questionnaires do not include these disease-specific symptoms, which are particularly distressing. Therefore, we have developed the neuro-oncology Caregiver Needs Screen (CNS) and evaluated its psychometric properties. METHODS: The 32-item instrument was developed based on PMBT caregiver interviews (N = 109) and expert review. The CNS was tested along measures of depression, anxiety, burden, and mastery in 122 PMBT caregivers. Principal components analysis was used to examine item properties and internal structure. Internal consistency reliability and construct validity were assessed. RESULTS: Six subscales were identified with internal consistency ranging between alpha = .653 and .857. Convergent validity was verified by moderate/high correlations between measures of caregiver well-being and CNS scale scores. CONCLUSIONS: Findings provide preliminary evidence of reliability and validity for the CNS. This instrument can be useful when assessing caregivers' needs for supportive care.
While dementia caregivers are regarded as a population with high unmet needs, there is little consensus as to how caregivers’ needs should be conceptualized and measured. This article describes how dementia caregivers’ needs are currently assessed in the scientific literature with the goal of suggesting guidelines for the enhancement of future measurement of caregiver needs. A review of 26 articles identified overarching themes within measurement approaches including variation in methodological rigor, proxy indicators of need, dual needs assessment of caregiver and person with dementia (PWD), and third-party needs assessment. We recommend future research dedicate theoretical attention to the conceptualization and classification of caregivers’ needs to build a stronger foundation for measurement. The measurement development process should capitalize on mixed-methodology and follow instrument development and validation guidelines set forth by measurement theory. Reliable and valid instruments are essential to developing services and policies that address dementia caregivers’ needs.
Families are considered as primary sources of care for individuals suffering from mental disorders. However, one of the major stresses in families is the infliction of a family member with mental illnesses causing dysfunction in health dimensions or generally their quality of life. Currently, most experts believe that religion can affect physical health and other aspects of human life. So, the aim of this study was to investigate “the relationship between care burden and religious beliefs among family caregivers of mentally ill patients.” This cross-sectional study was carried out in Iran on 152 families with mentally ill patients who were hospitalized in psychiatric wards. The sampling method was nonprobability and consecutive sampling method. The data collection instruments included a demographic characteristic questionnaire, Religious Beliefs, and Zarit Care Burden Questionnaires. The mean score for care burden was 30.99 (SD = 16.45). 5.9% of the participants reported a low level, and 39.5% experienced a moderate level of care burden. Moreover, the mean score for religious beliefs was 115.5 (SD = 13.49), and majority of the participants (70.4%) were endowed with strong religious beliefs. There were no significant associations between care burden and intensity of religious beliefs among the study samples (P = 0.483). Considering the results of this study indicating experience of moderate-to-high levels of care burden in families with mentally ill patients, it is recommended to consider such families and their religious beliefs as contributing factors in coping with challenges of mental disorders.
Aim Increasing demands for care provision to older adults require good physical and mental health among caregivers. Few studies have examined the health status and correlates of quality of life among caregivers of older adults. The present study therefore sought to examine the prevalence of chronic physical conditions, psychological distress, and correlates of physical and mental quality of life among caregivers of older adults (≥60 years) in Singapore. Methods Participants were 285 informal caregivers who were providing care to an older relative. Participants were recruited at the Institute of Mental Health, Singapore, and they completed self-report measures on chronic physical morbidity, psychological distress, and physical and mental quality of life. Multiple regression models were constructed to examine correlates of physical and mental quality of life. Results More than half of the caregivers had at least one chronic physical condition (58.6%) and psychological distress (52.6%). Chronic physical morbidity, psychological distress, and secondary education status were associated with lower physical quality of life. Psychological distress, younger age, primary education status, and more time spent caregiving were associated with lower mental quality of life. Conclusion Poor physical and mental health among caregivers may impair their ability to provide adequate care to older adults with progressive medical needs. It is important for medical practitioners not to neglect the physical and mental health of caregivers through continued assessment of chronic physical morbidity, psychological distress, and quality of life.
Purpose: We aimed to assess the influence of anxiety and depression on the physical and mental quality of life (QoL) in patient with chronic obstructive pulmonary disease (COPD) and caregiver dyads, detect the simultaneous effect of anxiety and depression of each partner on the other’s QoL and determine the dyadic patterns. Methods: A cross-sectional descriptive design was used. The actor–partner interdependence model estimated by structural equation modeling was used for the dyadic analysis. Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7 (GAD-7) and 12-Item Short-Form Health Survey (SF-12) were used to measure depression, anxiety and QoL, respectively. Results: Eighty COPD dyads were enrolled in the study. Patients presented higher depression symptoms and poorer physical and mental QoL than their caregivers, whereas comparable levels of anxiety were found in patients and caregivers. The model exploring the effects of depression and anxiety on mental QoL found that patients’ depressive symptoms negatively influence their mental QoL, and caregivers’ anxiety and depression symptoms negatively impact their mental QoL. The model exploring the effects of anxiety and depression on physical QoL detected one statistically significant actor effect with patients’ depressive symptoms negatively influencing their physical QoL, and two partner effects with caregivers’ anxiety worsening patients’ physical QoL and caregivers’ depression improving patients’ physical QoL. Conclusions: The results suggest that caregivers’ psychological distress influences caregivers’ mental QoL and patients’ physical QoL. Therefore, health-care professionals should assess and treat anxiety and depression in both members of the COPD dyad to improve their QoL.
Objectives: Quality of life among Hong Kong's family dementia caregivers is a current heightened public health concern. This was one of the first East Asian studies to examine the role of family expressed emotion (EE) in the negative caregiver outcomes associated with dementia caregiving. EE comprises overinvolved and critical communications in families of people with mental illness. In this research, caregiver EE was evaluated as a mediator of the relationship between behavioral and psychological problems associated with dementia (BPSD) and negative caregiver outcomes. Method: Participants were 89 Hong Kong family caregivers (79% female, 84% married, 43% >50 years of age) of people with diagnosed dementia, recruited from elder day care centers. Caregivers completed the Neuropsychiatric Inventory (NPI), Cohen Mansfield Agitation Inventory (CMAI), Level of Expressed Emotion scale (LEE), Zarit Burden Interview, and Center for Epidemiological Studies Depression Scale (CES-D). Results: Agitation, delusions, hallucinations, aggression and irritability were BPSD most associated with caregiver burden and depression. EE significantly mediated the BPSD-negative caregiver outcome relationship. Among EE subscales, intrusiveness was significantly more common and less associated with negative caregiver outcomes. Caregiving hours, low family support, and religious nonaffiliation were associated with EE and poorer caregiver outcomes. Conclusions: The negative impact of BPSD on dementia caregivers in Hong Kong is influenced by EE. Higher scores on EE intrusiveness may be partly accounted for by filial piety, a strong sense of family responsibility characterized by high attentiveness to elderly family members. As EE is a potentially modifiable factor, interventions are considered.
Introduction: In May 2010, the Caregivers and Veterans Omnibus Health Services Act of 2010, was signed into law in the United States, establishing the Program of Comprehensive Assistance for Family Caregivers (PCAFC) provided through the VA Caregiver Support Program (CSP). Prior to this program, over half of family caregivers reported being untrained for the tasks they needed to provide. The training through PCAFC represents the largest effort to train family caregivers in the U.S., and the features of the program, specifically a monthly stipend to caregivers and access to a Caregiver Support Coordinator at each VA medical center nationally, make it the most comprehensive caregiver support program ever enacted in the U.S. Methods: The purpose of this study is to examine the association between PCAFC participation and caregiver well-being following enrollment, comparing participating PCAFC caregivers to caregivers who applied to but were not approved for PCAFC participation (non-participants). Well-being is defined using three diverse but related outcomes: depressive symptoms, perceived financial strain, and perceived quality of the Veteran's health care. Additional well-being measures also examined include the Zarit Burden Inventory and positive aspects of caregiving. Results: The survey sample comprised of 92 caregivers approved for PCAFC and 66 caregivers not approved. The mean age of responding caregivers was 45; over 90% of caregivers were female; and over 80% of caregivers were married in both groups. We find promising trends in well-being associated with PCAFC participation. First, the perception of financial strain declined among participants compared to non-participants. Second, while depressive symptoms did not improve for the PCAFC caregivers, depressive symptoms increased among non-participants. Third, perceived quality of the Veteran's VA healthcare was no different between participants and non-participants. However, the 158 returned surveys reflect only a 5% response rate; hence this evidence is preliminary. Conclusion: Despite cautioning that results be interpreted as preliminary, this study provides unique descriptive information about young caregivers of U.S. post-9/11 Veterans, and offers a first step in filling the evidence gap about how comprehensive caregiver support in the U.S. may affect caregiver well-being. These preliminary findings should be explored and validated in a larger sample.
Background: There is insufficient research into informal caregivers' quality of life (QoL) in Poland. The purpose of this work is to study predictors that considerably affect QoL of informal caregivers (IC) providing home care for seniors with chronic diseases and a functional performance deficit. Materials and methods: In the cross-sectional research design, ICs were randomly chosen among the geriatric population receiving care in 5 primary health care settings. The WHOQoL-AGE questionnaire was used to assess QoL of ICs (n=138). The Barthel scale and Polish version of the Abbreviated Mental Test Score (AMTS) were applied to assess individuals with chronic diseases and functional and mental performance deficits (n=138). The Geriatric Depression Scale Short Form (GDS-SF) was used to measure the extent of risk of depressive symptoms in care-receivers. A hierarchical regression analysis was carried out to determine predictors of caregivers' QoL. Results: Mean values in the group of seniors provided with home care were as follows: the Barthel scale M=43.20, SD=27.06, the AMTS M=7.78 (SD=1.65), and the GDS-SF M=7.34 (SD=3.10). QoL of ICs (the WHOQoL-AGE) was M=70.14 (SD=15.31). Significant predictors of caregivers' QoL turned out to be support in care given by others β =0.605, p<0.001, experience in care β =-0.220; p<0.001, caregivers' health self-assessment β =0.174, p<0.001, and depressive disorders in care-receivers GDS β = −0.178, p<0.001. Conclusions: The QoL of ICs who provide care for individuals with chronic diseases and a functional performance deficit improves with an increase in the support they receive from others, their higher health self-assessment, and greater experience in care. An increase in depressive symptoms in care-receivers determines a lower level of caregivers' QoL.
Aims: Most caregiving literature focuses on individual-level outcomes, with sparse knowledge on family-level outcomes. Therefore, the purpose of this study was to describe the family quality of life (FQOL) of people with dementia and identify factors that influence their FQOL, as perceived by family caregivers. Methods: A convenience sample of 31 family caregivers of people with dementia was interviewed using a modified version of the Family Quality of Life Survey (FQOLS-2006). Statistical analyses were conducted to examine domain level and global FQOL outcomes. Results: Although caregivers reported the highest level of attainment in the domain of family health, they were also least satisfied with this domain. Global FQOL was significantly associated with caregiver health, care-recipient co-morbidities of psychological and motor problems, and three (health, leisure, community) of the nine FQOL domain level outcomes. Conclusion: Encouraging families to increase leisure participation can improve their health and global FQOL
In late stage Parkinson's disease (PD) (i.e., Hoehn and Yahr (HY) stages IV-V), both motor and nonmotor symptoms (NMS) are pronounced, and the patients become increasingly dependent on help in their daily life. Consequently, there is an increasing demand on health-care and social care resources for these patients and support for their informal caregivers. The aim of this study was to assess satisfaction with care in late stage PD patients and to identify factors associated with satisfaction with care. Moreover, to assess their informal caregivers' satisfaction with support and to identify factors associated with caregivers' satisfaction with support. Factors potentially associated with satisfaction with care/support were assessed in 107 late stage PD patients and their informal caregivers (n=76) and entered into multivariable logistic regression analyses. Fifty-eight (59%) of the patients and 45 (59%) of the informal caregivers reported satisfaction with their overall care/support. Patients satisfied with their care reported higher independence in activities of daily living (ADL) (Katz ADL index; P=0.044), less depressive symptoms (Geriatric Depression Scale, GDS-30; P=0.005), and higher individual quality of life (QoL) (Schedule for the Evaluation of Individual Quality of Life Questionnaire, SEIQoL-Q; P=0.036). Multivariable logistic regression analyses identified depressive symptoms (P=0.015) and independence in ADL (P=0.025) as independently associated with satisfaction with care. For informal caregivers, the analyses identified patients' HY stage (P=0.005) and caregivers' QoL (Alzheimer's Carers Quality of Life Inventory, ACQLI; P=0.012) as independently associated with satisfaction with caregiver support. The results indicate that an effective both pharmacological and nonpharmacological PD therapy is important, to adequately treat motor and NMS (e.g., depressive symptoms) in order to improve depressive symptoms and patient independence in ADL. This may benefit not only the patients, but also their informal caregivers.
Objective: To identify, in caregivers of patients with Alzheimer’s disease (AD) dementia, factors associated with subjective (personal, physical, emotional, and social) and objective (informal caregiver time and costs) caregiver burden. Design: Prospective longitudinal European observational study: post-hoc analysis. Setting: Clinic. Participants: Community-dwelling patients in France and Germany aged ≥ 55 years (n = 969) with probable AD and their informal caregivers. Measurements: Mini-Mental State Examination (MMSE), Alzheimer’s Disease Cooperative Study—Activities of Daily Living (ADCS-ADL), 12-item Neuropsychiatric Inventory (NPI-12), Zarit Burden Interview (ZBI), informal caregiver basic and instrumental ADL hours (Resource Utilization in Dementia instrument), and informal caregiver costs. Mixed-effect models of repeated measures (MMRM) were run, including baseline and time-dependent covariates (change from baseline [CFB] to 18 months in MMSE, ADCS-ADL, and NPI-12 scores) associated with CFB in ZBI score/informal caregiver time over 36 months (analyzed using linear regression models) and informal caregiver costs over 36 months (analyzed using generalized linear models). Results: Greater decline in patient function (ADCS-ADL) over 18 months was associated with increased subjective caregiver burden (ZBI), hours, and costs over 36 months. Increased behavioral problems (NPI-12) over 18 months also negatively impacted ZBI. Cognitive decline (MMSE) over 18 months did not affect change in caregiver burden. Conclusions: Long-term informal caregiver burden was driven by worsening functional abilities and behavioral symptoms but not cognitive decline, over 18 months in community-dwelling patients with AD dementia. Identifying the drivers of caregiver burden could highlight areas in which interventions may benefit both caregivers and patients.
Despite widespread recognition of the usefulness of a biopsychosocial approach in social work, there are limited studies exploring how social workers can use this approach to support the health and wellbeing of carers of young people with first episode psychosis (FEP). Validated questionnaires and anthropometric measures were used to assess the physical health and wellbeing of 42 carers of young people with FEP. Carers had moderate levels of negative caregiving consequences, quality of life, and health status. More than half (52.4%) of carers were experiencing social isolation. Many carers were overweight (78.6%), had a high risk for type 2 diabetes (39.0%), and had hypertension (33.3%). Practical implications of a biopsychosocial approach to social work that supports both clients and their carers are discussed. Social workers can better utilise the biopsychosocial approach in working with young people with first episode psychosis and their carers. Holistic care using a biopsychosocial approach should support individuals and their families in both physical and mental health. Social workers can further support the health and wellbeing of carers by collaborating with medical and other allied health colleagues within multidisciplinary teams, and by referring carers with physical health problems to general practitioners.
Objective: To develop a valid and reliable tool to measure triadic decision making between older adults with multiple chronic conditions (MCC), their informal caregivers and geriatricians. Methods: Video observational study with cross-sectional assessment of interaction during medical consultations between geriatricians (n = 10), patients (n = 108) and informal caregivers (68) by three calibrated raters at the geriatric outpatient department of two Dutch hospitals. The Observer OPTIONMCC instrument was developed, based on the 'Dynamic model of SDM in frail older patients' and the 'Observing Patient Involvement in Decision Making - 5 item scale' (Observer OPTION-5). Results: Factor analysis confirms that it is acceptable to regard the new scale as a single construct. The 7-item single factor solution explained 62.76% of the variability for geriatricians, 61.60% of the variability for patients and 54.32% of the variability for informal caregivers. The inter-rater ICC for the total Observer OPTIONMCC score was .96, .96, and .95 (resp. geriatricians, patients, informal caregivers), with values ranging from .60 to .95 for individual items, showing good levels of agreement. Conclusion and Practice Implications: We conclude that Observer OPTIONMCC is sufficiently valid and reliable to be used for the assessment of triadic SDM in populations of older patients with MCC.
Health and social sciences literature recognises the significance of psychological resilience in relation to stressful life events. Providing ongoing care for a friend or relative with dementia can be inherently stressful. The aims of this qualitative study were to: (a) explore discrepancies and congruency between definitions of resilience in the academic literature and carers own conceptualisations; (b) assess differences and similarities in conceptualisations of resilience between carers with high, medium and low resilience scores; (c) compare carers’ perceived level of resilience with the level of resilience when measured on a standardised tool. Participants were recruited from an earlier study examining levels of resilience and well‐being in UK carers of people with dementia. A subset of carers were identified using theoretical sampling, to ensure a diversity of participant characteristics and caring experience. Thirteen carers took part in semi‐structured interviews between September and October 2017. Interpretative description was used to elicit findings relevant to clinical practice. We found carers’ definitions were concordant with clinical and academic definitions described in the literature. However, they extended the concept and placed greater value on the role of self‐compassion. Carers recognised that the appearance of resilience may have negative consequences in terms of securing support from others. Scores on the Brief Resilient Coping Scale did not always match carers’ own perceptions of their level of resilience. Additionally, service providers’ offers of support did not always reflect carers’ priorities. Aligning these two areas would better enable carers and providers to work together to identify resources to support resilience.
Background/objective: although informal caregivers (ICG) find caring for a relative mainly satisfying, it can be difficult at times and it can lead to a state of subjective burden characterised by -among others- fatigue and stress. The objective of this study is to analyse the relationship between perceived social support and subjective burden in providing informal care to frail older people. Methods: a descriptive cross-sectional study was conducted using data from a large nationwide longitudinal effectiveness study. Pearson correlations were calculated between the variables for support and burden. Logistic regression models were applied to determine the association between being unsatisfied with support and burden, taking into account multiple confounding variables. Results: of the 13,229 frail older people included in this study, 85.9% (N = 11,363) had at least one informal caregiver. Almost 60% of the primary informal caregivers manifested subjective burden, measured with the 12-item Zarit-Burden-Interview (ZBI-12). The percentage of informal caregivers that were unsatisfied with support from family and friends was on average 11.5%. Logistic regression analysis showed that being unsatisfied with support is associated with burden (OR1.85; 95%CI1.53–2.23). These results were consistent for the three groups of impairment level of the frail older persons analysed. Conclusions: the association between perceived social support and subjective caregiver burden was explored in the context of caring for frail older people. ICGs who were unsatisfied with support were more likely to experience burden. Our findings underline the importance of perceived social support in relation to caregiver burden reduction. Therefore efforts to improve perceived social support are worth evaluating.
In this cross-sectional study, we aimed to determine factors influencing the health status of caregivers of stroke survivors. A total of 126 caregivers of stroke survivors were recruited from three outpatient clinics in Thai Nguyen National General Hospital, Vietnam, from November 2016 to March 2017. Data were collected through six instruments: a demographic questionnaire, the Modified Barthel Index, the Zarit Burden Interview Scale, the Multidimensional Scale of Perceived Social Support, the Family Caregiver Conflict Scale, and the Short Form-36 Health Survey. Stepwise multiple regression was employed to analyze the data. Caregiver burden, patient's functional status, caregiver's age, and social support together explained 80.3% of the variations in health status of caregivers of stroke survivors. Caregiver burden was the strongest predictor of health status of these caregivers. Based on the findings, nurses should take caregiver's age, functional status of stroke survivors, caregiver burden, and social support into consideration when preparing family caregivers to provide care for stroke survivors. To reduce perceived caregiver burden, family support interventions should be embraced to enhance health status of the caregivers of stroke survivors.
Objectives: To determine whether specific external signs of emotional distress (ESED) can be an indirect measure of emotional distress in caregivers.; Methods: A cross-sectional multicentre design was used. 148 primary caregivers of advanced cancer patients attended in four Spanish palliative care units participated in this study. The emotional distress of caregivers was measured using both the Emotional Distress of Caregivers Scale and a psychological interview. Health professionals collected data using a standard clinical interview process after a brief training period.; Results: More than half the caregivers (60%) presented with emotional distress. A positive correlation (r=0.566) was found between the intensity of ESED and emotional distress per se. Caregivers who presented emotional distress showed more ESED than those that did not (p<0.01). The study found significant differences for the categories 'visible signs of sadness, fear, crying, feeling overwhelmed' (p<0.001), 'difficulty in separating from the patient: family refuses to let the patient make decisions and insists on care' (p<0.001) and 'visible signs of anger, irritability or frequent disagreement with therapeutic measures' (p<0.001). No significant differences were found with respect to gender. The set of items to measure these external signs presented an adequate reliability assessed using Cronbach's alpha (α=0.773).; Conclusions: The assessment of ESED in caregivers could serve as a useful method to assess their emotional distress. Incorporating the systematic assessment of these external signs as part of the assessment of the emotional distress of primary caregivers could improve the overall assessment and treatment provided to these caregivers.
Purpose: In resource-limited settings, family caregivers (FCGs) of adult cancer patients (ACPs) function in a context marred by high patient symptom burden, limited cancer care services and support and high caregiving burden. Despite this predicament, little is known about the quality of life (QoL) of FCGs in these settings. The study aimed to explore the determinants of QoL among FCGs of ACPs in Uganda.; Methods: A cross-sectional design was used to collect data from 284 FCGs of ACPs. The study questionnaire was composed of the Katz Index, Family Pain Questionnaire, modified Chronic Pain Self-efficacy Scale and the Caregiver Quality of Life-Index-Cancer.; Results: The mean age of FCGs was 36 ± 13.8 years. Most ACPs had stage 3 or 4 cancer (56%), severe pain (66.2%), reported moderate pain relief (51.1%) and were on chemotherapy (60.9%). The overall QoL of FCGs (70.2 ± 20.3) was moderate and 46.8% had low QoL. Most FCGs had high positive adaptation or financial concerns (55.3%) and low QoL in terms of burden (50.7%), disruptiveness (53.5%) and support (56.7%). The main determinants of overall QoL were FCGs' knowledge and self-eficacy for cancer pain management. The determinants of burden, disruptiveness, support and positive adaptations and financial concerns are reported.; Conclusion: The key determinants of the QoL of FCGs were knowledge and self-efficacy for cancer pain management. In Uganda and similar settings, interventions to build FCGs capacity in cancer-related pain and other symptom management may help to enhance the QoL of FCGs and the ACPs.
Background and objectives: Severe mental disorders require informal care, usually provided by family members of the affected. The aim of the study is to examine the burden of informal caregiving for individuals with schizophrenia and affective disorders prior to hospital admission in Bulgaria. Methods: The study has an observational, cross-sectional, retrospective design. Individuals with schizophrenia and affective disorders and their caregivers are evaluated upon the patients’ admission for inpatient treatment. The objective and subjective consequences of providing informal care are evaluated with the Burden Assessment Scale (BAS) as a primary outcome measure. Its factor structure and determinants of high burden of care are examined. Results: 117 individuals with mental disorder and 117 caregivers are evaluated, dichotomized in two groups according to the patient's diagnosis. The time spent in informal care is 5.7 hours per day (SD = 2.9) for schizophrenia and 3.9 hours per day (SD = 3.0) for affective disorders, p =.002. The mean score on the BAS is 44.7 (SD = 11.0) and 42.0 (SD = 12.8) respectively, p =.221. A common pattern of the burden with a 5-factor solution explaining 66% of the variance is presented, including the factors Limitations, Conflicts, Guilt, Trap, and Stigma. Contributors for the increase in the BAS are stigma (p <.001), history of threats (p =.014), supervision for disturbing behaviour (p <.048), younger age of the caregivers (p =.043), spouses/partners to the patients (p <.001), less social contacts (p =.017) and provision of informal care on a daily basis (p =.027). Conclusions: The caregivers of individuals with schizophrenia and affective disorders experience considerable objective and subjective burden.
Objectives: Informal caregivers are vulnerable to poor mental health and quality of life (QoL). Self-compassion may protect against this. This study investigated depression and QoL in partner caregivers of people with a long-term or neurological condition (e.g. dementia or spinal cord injury) and explored the extent to which QoL and self-compassion are predictive of depression. Design: A cross-sectional, questionnaire design. Methods: Participants were recruited from charities and support groups. Partner caregivers (N = 57) completed assessments of depression, QoL, and self-compassion. Results: Over half (61.8%) of caregivers experienced at least mild symptoms of depression, illustrating high prevalence among caregivers compared with the general population. Overall QoL was poor compared with non-caregivers. QoL was poorest in the physical domain (M = 51.9, SD = 10.1) and highest in the environmental domain (M = 64.9, SD = 15.8). Both self-compassion and QoL were significant predictors of depression (p < 0.05), explaining 48.8% of the variance. Hours spent providing care was also significantly predictive of depression (p < 0.05). Conclusion: Self-compassion and QoL may be important targets for supportive interventions for this population. This study underscores the importance of developing supportive interventions for informal partner caregivers, and developing self-compassion in these.
Several studies have highlighted the significant role of families in end-of-life care. Carers' well-being may depend on how they experience the care and support provided to their loved ones. This study was conducted to investigate family caregivers' assessment of specialized end-of-life care in a sample of 119 close family members in Iceland. The response rate was 58.8% (n = 70). Furthermore, the aim was to assess the psychometric characteristics of the Icelandic version of Family Assessment of Treatment at the End of Life (FATE). Descriptive statistics were used to describe the characteristics of the data. Results indicate that good communication and understanding of all parties concerned are the foundation for family caregivers' satisfaction with end-of-life care. Participants were generally satisfied with the care provided, whereas some important aspects of care were rated as excellent. Evaluation of management of symptoms reported in this study should be given specific attention in future studies considering its unsatisfactory outcomes. Nurses need to be aware of the impact that physical suffering of the patient might have on the family caregivers. The Icelandic version of the Family Assessment of Treatment at the End of Life instrument is a psychometrically sound instrument useful for measuring caregivers' satisfaction with service provided at the end of life, although modifications would improve the instrument for use on this population.
Objective: Develop and validate an instrument to assess family resilience and, more specifically, the family dynamics and resources, estimating the adaptation flexibility to cancer disease. Cohesion, communication, coping style and relational style were considered as critical functional areas in the construction of the instrument.; Design: Two cross-sectional studies. Study 1: identification of factorial structure of the questionnaire in two samples with different cancer sites. Study 2: validation of the questionnaire in patients with cancer in two different phases of their therapeutic pathway.; Participants and Setting: A total of 213 patients with a histologically confirmed non-metastatic breast or prostate cancer and 209 caregivers were recruited for the two studies from an oncological hospital in Italy.; Outcome Measures: The Resilience Scale for Adults and the Family Resilience (FaRE) Questionnaire, developed by the researchers, were administered to all patients and caregivers who gave consent.; Results: In study 1, the 60-item version of the FaRE Questionnaire underwent discriminant and construct validity, internal consistency and factorial analysis. Comparisons between patient and caregiver populations showed that patients perceived higher levels of family resources (p=0.048) and that patients with prostate cancer perceived less social support compared with patients with breast cancer (p=0.002). Factor analysis demonstrated four domains: communication and cohesion, perceived social support, perceived family coping, and religiousness and spirituality. In study 2, the validity and factorial structure of the final scale, composed of 24 items, were confirmed. The Cronbach alpha of all subscales was above 82. Normative values for patients with breast cancer can provide indications of family resilience levels.; Conclusions: Preliminary findings showed acceptable psychometric properties for the FaRE Questionnaire to evaluate family resilience in oncological patients and their caregivers. Further research should test its sensibility to change to assess its use as a psychoemotional monitoring tool and its validity in other medical contexts.
Aims and Objectives: This study aimed to analyse the prevalence and factors associated with suicidal ideation among family caregivers of people with mental disorders.; Background: Studies conducted with family caregivers of people with dementia and cancer point out a high prevalence of suicidal ideation among these subjects; however, this aspect has not yet been investigated among family caregivers of people with mental disorders.; Design: This is a cross-sectional study, conducted with 537 family caregivers of patients from 16 Psychosocial Care Centers (CAPS) of the 21st Health Region of the state of Rio Grande do Sul, Brazil.; Methods: Question 17 of the Self-Reporting Questionnaire (SRQ-20) was used for suicidal ideation screening. The prevalence of suicidal ideation was calculated according to sociodemographic and care variables, with confidence interval estimate (95% CI). Crude and adjusted odds ratios were calculated by logistic regression. The Guidelines to Reporting of Observational Studies in Epidemiology (STROBE Statement) was adhered in this study (See File S1).; Results: The prevalence of suicidal ideation found in this study for the 30 days preceding the interview was 12.5% (95% CI: 10-15). The factors associated with the outcome were lower age, lower schooling, feeling of burden, self-report of stress problem and dissatisfaction with family relationships.; Conclusion: The prevalence of suicidal ideation among the studied family caregivers was high and strongly associated with issues regarding care, showing the need for interventions that provide support.; Relevance For Clinical Practice: Nurses are a large part of the workforce of the community mental health services. The careful characterisation of the subjects who show suicidal ideation, as performed in this study, may reveal specificities capable of refining the diagnostic potential for establishment of action plans in a timely manner, avoiding possible attempts or even the consummation of suicide.
Background: The aim of the present study is to analyse the variables associated with the family care of people diagnosed with serious mental illness.; Material and Methods: A cross-sectional study was carried out involving caregivers of people with serious mental illness (SMI) who were known to the mental health services in Valencia (España) and associations for those with SMI. The sample comprised 417 caregivers who completed a sociodemographic questionnaire and the Zarit Burden Interview. Bivariate analyses (t-test, analysis of variance and Pearson correlation) were performed, as was a multiple linear regression model. Values of p < .05 were considered significant. The study was carried out in accordance with the recommendations of the ethics committees of the participating institutions.; Results: The statistical analyses showed significant associations between the sociodemographic and clinical variables of the caregivers and patients and the burden felt by caregivers of people with SMI. The importance of both formal and informal social support stands out as a protective factor against the consequences of the illness's impact on the main caregiver.; Conclusions: The role of spaces of mutual support is crucial. The results suggest that family psychoeducational programmes should be created, applied and evaluated in all mental healthcare services so as to reinforce training in mental health matters and provide support and assessment to caregivers in order to ease their burden.
Development and evaluation of supportive caregiver interventions has become a national priority. This study's aim was to evaluate how caregivers participating in the Department of Veterans Affairs (VA) Caregiver Support Program (CSP) use and value supportive services. Qualitative semi-structured interviews ( N = 50 caregivers) were the core of a mixed-methods design, and surveys ( N = 160) were supplemental. Caregivers who had used CSP services valued emotional, functional, and health care navigational support, calling support groups and the program coordinator their "lifeline." However, many described a lack of connection with the program-not knowing about or successfully engaging in program services-and needed more information about available resources. Caregivers in rural areas or caring for individuals with specific diseases reported needing tailored services to meet their unique needs. Policy makers and practitioners should proactively promote supportive services for caregivers. Future research should explore strategies for reducing barriers to accessing tailored support to meet the needs of a diverse caregiver population.
Background: This paper describes the Co-Care-KIT, a reflective toolkit designed to provide insights into the diverse experiences of home-based informal caregivers during the delivery of care to a relative or loved one. Objective: The aim of this study was to evaluate the toolkit, including a custom-designed journal, tools for photography-based experience sampling, and heart rate tracking, which enables caregivers to collect and reflect on their positive and negative daily experiences in situ. Methods: A 2-week field study with informal caregivers (N=7) was conducted to evaluate the Co-Care-KIT and to capture their daily personal emotional experiences. The collected data samples were analyzed and used for collaborative dialogue between the researcher and caregiver. Results: The results suggest that the toolkit (1) increased caregivers’ awareness of their own well-being through in situ reflection on their experiences; (2) empowered caregivers to share their identities and experiences as a caregiver within their social networks; (3) enabled the capturing of particularly positive experiences; and (4) provided caregivers reassurance with regards to their own mental health. Conclusion: By enabling capturing and collaborative reflection, the kit helped to gain a new understanding of caregivers’ day-to-day needs and emotional experiences.
Huntington's disease (HD) is a rare genetic neurodegenerative disorder that causes motor disorders, neuropsychiatric symptoms and a progressing deterioration of cognitive functions. Complex issues resulting from the hereditary nature of HD, the complexity of symptoms and the concealed onset of the disease have a great impact on the quality of life of family carers. The caregivers are called the "forgotten people" in HD, especially with relation to genetic counseling. This study aims to explore the reliability and validity of the Huntington's Disease Quality of Life Battery for carers (HDQoL-C) within a Polish population. A total of 90 carers recruited from the Enroll-HD study in Polish research centers of the European Huntington's Disease Network completed a polish translation of the HDQoL-C. Data were subjected to Principle Components Analysis (PCA) and reliability measures. The Polish version of the shortened versions of the HDQoL-C is similarly valid compared to the original English version and suitable for use within this population. The HDQoL-C has previously demonstrated a wide range of benefits for practitioners in capturing and understanding carer experience and these benefits can now be extended to Polish speaking populations.
Background We aimed to investigate the burden of informal care in Hungary (HU), Poland (PL) and Slovenia (SI). Methods A cross-sectional online survey was performed involving representative samples of 1000 respondents per country. Caregiving situations were explored health status of informal caregivers/care recipients and care-related quality of life were assessed using the EQ-5D-5L and CarerQol-7D. Results The proportion of caregivers was (HU/PL/SI) 14.9, 15.0 and 9.6%, respectively. Their mean age was 56.1, 45.6 and 48.0, and the average time spent on informal care was 27.6, 35.5 and 28.8 h/week. Chronic care was dominant (> 1 year: 78.5%, 72.0%, 74.0%) and care recipients were mainly (own/in-law) parents. Average EQ-5D-5L scores of care recipients were 0.53, 0.49 and 0.52. For Poland and Slovenia, EQ-5D-5L scores of informal care providers were significantly lower than of other respondents. Average CarerQol-7D scores were (HU/PL/SI) 76.0, 69.6 and 70.9, and CarerQol-VAS was 6.8, 6.4 and 6.6, respectively. Overall, 89, 87, and 84% of caregivers felt some or a lot fulfilment related to caring. Problems with combining tasks with daily activities were most important in Hungary and Slovenia. Women had a higher probability of being a caregiver in Hungary. CarerQol-7D scores were significantly associated with caregivers’ EQ-5D-5L scores. In Hungary and Poland, living in a larger household was positively, while caring for patients with mental health problems was negatively associated with CarerQol-7D scores. Conclusions These first results from the Central and Eastern European region using preference-based measures for the evaluation of informal care can serve as a valuable input for health economic analyses.
Background: Burden of caregivers of people with mental illness (PWMI) is considered to be a negative impact of the care provided by the family to the patient. However, little is known about the extent of the burden among caregivers of PWMI in Ethiopia. The aim of this study, therefore, is to assess the magnitude and associated factors of burden among caregivers of PWMI at Jimma University Medical Center, 2017.; Methods: Institution-based cross-sectional study design was employed among 406 conveniently selected caregivers of PWMI and interviewed using a structured questionnaire. Family burden interview schedule (FBIS) was used to assess burden of caregivers. Bivariate and multivariable linear regression analyses were performed to determine the predictors of burden among caregivers.; Results: Nearly two-thirds [264 (65.0%)] of the participants were male with a mean age of 38.45 ± 12.03 years. The mean score for burden among caregivers on family burden interview schedule was 23.00 ± 10.71. Age of the caregivers (β = 0.18, p < 0.001), being female caregiver (β = 2.68, p < 0.01), duration of contact hours with the patient per day (β = 0.74, p < 0.001), perceived stigma by the caregiver (β = 0.47, p < 0.001), and providing care for patients who had history of substance use in life (β = 1.52, p < 0.05) were positive predictors of higher burden among caregivers. Whereas, caregivers' income (β = 7.25, p < 0.001), caregivers who had no formal education (β = 4.65, p < 0.01), and caregivers' social support (β = 0.78, p < 0.001) were negatively associated with higher burden among caregiver.; Conclusion: Caregivers of people with mental illness experience enormous burden during providing care for their relatives with mental illness. Therefore, creating community awareness and targeted interventions in the area of treatment access, stigma, financial, and other social support for people with mental illness and their caregivers would help out to reduce these burdens.
Objective: The issues surrounding a patient's terminal phase of cancer and the imminent death of the individual represent a major family crisis affecting all its members. The goal of this study was to assess the prevalence of psychological morbidity in family caregivers of persons with terminal cancer in terms of psychological distress, depression, anxiety, somatization, and complicated anticipatory grief, and to determine which factors may influence these responses. Method: One hundred and twelve family caregivers of individuals with terminal cancer completed an assessment protocol comprising the Brief Symptom Inventory (depression, anxiety, somatization, and a computed score for global distress), the Marwit-Meuser Caregiver Grief Inventory - Short Form (anticipatory grief), the Family Inventory of Needs (importance and satisfaction of needs), and the Systemic Clinical Outcome Routine Evaluation -15 (family functioning). Prevalence of psychological morbidity was determined through descriptive and frequency statistics. Predictors of psychological morbidity were ascertained through structural equation modelling methods. Result Regarding the prevalence of psychological morbidity in family caregivers, 66.1% reported high levels of distress, 68.8% showed high risk of depression, 72.3% showed high risk of anxiety, 50.9% reported high levels of somatization, and 25.9% showed high risk of complicated anticipatory grief. It was found that the predictors of age, gender, relationship to the family member with terminal cancer, the caregiving role played (i.e., primary vs. nonprimary), the satisfaction of needs by healthcare professionals, and family functioning play an important role in terms of one's risk of developing psychological morbidity. Significance of results This study revealed an alarming prevalence of psychological morbidity in family caregivers of individuals living with terminal cancer, making it crucial to move forward from a patient-centered approach to a family-centrad approach to reduce the risk of family maladjustment when facing the imminent death of a family member and to prevent postdeath unadjusted responses.
Objective: To assess the quality of life and the burden of female caregivers.; Method: Descriptive, cross-sectional, quantitative study carried out with 224 informal caregivers from March to July 2016. Three instruments were used: a characterization form for the caregiver, the WHOQOL-Bref questionnaire and the Zarit Burden Interview. The following tests were used: Cronbach's Alpha, Kolmogorov-Smirnov, Kruskal-Wallis, Spearman and Mann-Whitney.; Results: The mean age of caregivers was 51.8 years with a standard deviation of 13.7. They were predominantly married, had a low income and low level of education, were first-degree relatives, had been providing care for one to five years and presented some pathology. The associations of quality of life that presented statistical significance were: income, marital status, number of people living with the caregiver and time of care.; Conclusion: The burden was negatively correlated with QOL, that is, the greater the burden, the more impaired will be the life of these caregivers.
Improving the quality of life of carers is the ultimate goal of carers’ policy and support services. This article discusses the issues and challenges in conceptualising and comparing carers’ quality of life in England and Japan, based on developing a Japanese version of the self-completion Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer). Since supporting carers in employment is a key concern in both countries, we particularly focus on this group of carers.
Aim: The aim of this study was to assess the caregiver burden over time of patients with haemorrhagic stroke and the determinants of this. Background: Identification of the predictors for caregiver burden can be used to improve the outcomes of stroke survivors and caregivers. Few studies focus on the caregiver burden of patients with haemorrhagic stroke and how this changes over time. Design This was a prospective longitudinal study. Methods: A convenience sample of 202 stroke survivor/caregiver pairs were recruited in the neurosurgery unit from March 2015 to March 2016. The participants were assessed at three different times by face to face or telephone interview. Caregiver burden was assessed using the Bakas Caregiver Outcomes Scale. Sociodemographic data and other characteristics of the pairs were also collected. Multiple linear regression was performed to identify the determinants. Results: Caregiver burden decreased from T1 to T3 significantly. The physical function, depression of stroke survivors, and self‐rated burden of caregivers were the most important determinants for overall caregiver burden. The factors identified explained 41.6% to 67.4% of overall burden. Conclusion: Caregiver burden decreased over time, affected by factors from patients and caregivers. More professional caregivers are needed to support informal carers.
Objective: This study examined the relationship between caregiver burden and reward and how each relates to factors, such as depression, within the caregiving dyad.; Method: A total of 101 older adults and their primary family caregivers were recruited upon enrolling in home health care services. Patients were assessed for sociodemographic information, depression, disability, pain, and caregiver support at baseline and at 8 weeks. Caregivers were assessed at baseline for sociodemographic information, depression, caregiver burden, caregiver reward, and caregiving tasks they provide.; Results: Burden and reward were significantly inversely correlated, but differentially associated with distinct patient and caregiver variables. Patients whose caregivers reported higher baseline levels of caregiver reward were more likely to have lower depression scores at follow-up.; Discussion: Given that different aspects of patients and caregivers influence reward and burden, assessing caregivers for both burden and reward may better target caregiver interventions at the individual and family levels, particularly for older adult depression.
Background: Family caregivers of people living with dementia can experience feelings of burden and stress but the concept of sense of coherence has been identified as an important protective trait against the negative impact of caregiving. Despite this, there has been no psychometric evaluation of the Sense of Coherence scale-13 with this population. Therefore, a psychometric evaluation was conducted using a mixed-methods approach.; Method: Five hundred and eighty-three caregivers of people living with dementia participated in the study. We examined the feasibility, internal consistency, construct validity, floor and ceiling effects, concurrent validity and face validity of the Sense of Coherence scale-13.; Results: The Sense of Coherence scale-13 demonstrated adequate internal consistency. Sense of coherence was positively related to resilience, sense of competence and health related quality of life, demonstrating good concurrent validity. However, the face validity of the scale was assessed as poor.; Conclusion: The sense of coherence scale performed well under psychometric evaluation however guidance for caregivers should be examined and revised to reflect feedback from caregivers who completed this study, which could lead to improved face validity for this scale.; Trial Registration Number: ISRCTN10748953 . Registered 18th September 2014.
Purpose: The caregiver roles and responsibilities scale (CRRS) was developed to facilitate formal assessment of broad life impacts for informal (i.e. unpaid) caregivers to people with cancer. Here we report the development and initial validation.; Methods: The CRRS was developed from the thematic analysis of two interview studies with cancer patients (stage III-IV breast, gynaecological, lung or melanoma) and caregivers. In the evaluation studies, participants completed the CRRS alongside the Caregiver Quality of Life-Cancer, the main criterion measure for concurrent validity, and the WHOQOL-BREF for additional convergent validity data. Questionnaires were completed at baseline, 7-days and 2-months. Demographic data and patient characteristics were collected at baseline.; Results: Two-hundred and forty-five caregivers to people with stage I-IV breast, colorectal, gynaecological, head and neck, lung or renal cancer or melanoma completed the CRRS at least once. The final 41 core items selected comprised five subscales: Support and Impact, Lifestyle, Emotional Health and Wellbeing, Self-care and Financial Wellbeing as well as three standalone items. Missing data rate was low (0.6%); there were no ceiling or floor effects for total scores. Cronbach's alpha was 0.92 for the CRRS-41; 0.75-0.87 for the subscales. CRRS showed good test-retest reliability (ICC = 0.91), sensitivity to change and the predicted pattern of correlation with validation measures r = 0.75-0.89. The standalone 7-item jobs and careers subscale requires further validation.; Conclusions: Initial evaluation shows the CRRS has good validity and reliability and is a promising tool for the assessment of the effects of cancer and cancer treatment on the lives and wellbeing of informal caregivers.
Aims and Objectives: To investigate the factors influencing caregiver burden in families of hospitalised lung cancer patients.; Background: Even though cancer symptoms among hospitalised lung cancer patients are serious and negatively affect caregivers, few research regarding to the factors of caregiver burden in hospitalised lung cancer patient has been carried out.; Design: Cross-sectional, descriptive and correlational study.; Methods: A convenience sample of hospitalised lung cancer patients (n = 107) was recruited from K University hospital in South Korea. Family depression, social support and caregiver burden as well as patients' lung cancer symptoms were measured using peer-reviewed and standard measurement tools. Descriptive statistics and parametric tests including stepwise regression were used to analyse the data. The STROBE guideline has been used to report this study.; Results: Caregiver burden among the families of hospitalised lung cancer patients was high; the regression model for caregiver burden among participants' families was significant. Depression among families was found to be the most influential factor for caregiver burden, followed by patients' lung cancer symptoms.; Conclusions: This study revealed that family caregivers' depression and patients' lung cancer symptoms were the most significant factors for families' caregiver burden. Future research should be conducted to identify the causes of depression among families of hospitalised lung cancer patients and develop management programmes to address such causes. It is also necessary to investigate the causes of increased caregiver burden that differentiate families of lung cancer patients from other cancer patients and provide education to help such families understand such causes.; Relevance To Clinical Practice: Findings from this study show that family's depression and lung cancer symptoms were significant factors for caregivers' burden. Hence, it is suggested for the healthcare providers to find for the best solution/strategies to reduce the caregiver's burden.
Objective: The primary aim of this investigation is to provide a novel dyadic test of a model of loneliness and health-related quality of life (HRQoL) in a sample of Latinas with breast cancer and their informal caregivers. Design: At baseline, dyads completed measures of loneliness and HRQoL. At a 3-month follow-up, they returned to complete the HRQoL measure. Associations were tested with the Actor–Partner Interdependence Model. Sample: About 234 Latinas with breast cancer diagnosed within the past year and their informal caregivers participated in the investigation. Findings: Loneliness was concurrently and negatively associated with HRQoL at baseline for both survivors and caregivers. Survivors' baseline loneliness, controlling for their baseline HRQoL, negatively predicted their HRQoL at 3 months. Survivors' HRQoL at baseline also predicted caregivers' HRQoL at 3 months. Conclusion: Loneliness is a risk factor for declines in HRQoL among cancer survivors. Their caregivers are also at risk for degraded HRQoL when the survivor experiences compromised HRQoL. Loneliness complicates the HRQoL of the cancer survivor–caregiver dyad.
Purpose: To examine the illness perceptions of informal carers of persons with depression, using the theoretical framework of Leventhal's Common-Sense Model (CSM) and to determine whether these illness perceptions are predictors of anxiety and depression, as measures of psychological well-being. Methods: A cross-sectional survey was conducted with 94 Maltese individuals caring for a person with depression within a community setting. The informal carers completed the modified Illness Perception Questionnaire (IPQS-Relatives version) and the Hospital Anxiety and Depression Scale (HADS). Data were analysed using descriptive statistics, Spearman's rank order correlations and ANCOVA regression models, to identify predictors of anxiety and depression respectively in the informal carers. Results: The informal carers perceived depression as a cyclical condition, having negative consequences on both the patient and on themselves. Participants perceived the causes of depression to be mainly psychosocial in nature and generally viewed the treatment as effective. Caring for a person with depression was perceived as having a considerable negative emotional impact on them. Years of caring was identified as a predictor of anxiety accounting for 20.4% of the variance, and timeline chronicity beliefs, consequences (relative) and illness coherence were identified as predictors of depression, accounting for 56.8% of the variance. Conclusion: Illness cognitions are significant predictors of depression, thereby suggesting that cognition-based interventions may be effective in targeting depression in these informal carers. Thus, health professionals should explore the carers' personal understanding of the disease, their timeline beliefs and the perceived consequences of providing care, as they relate to their psychological well-being.
Aim: Depression among caregivers of older persons is a serious concern, but it is often overlooked and neglected in developing countries. The aim of this study was to examine the relationship between perceived social support and depression in informal caregivers of community-dwelling older persons in Chile.; Methods: We analyzed cross-sectional secondary data on 377 dyads of community-dwelling older persons and their informal caregivers from a nationwide survey in Chile. The Duke-UNC Functional Social Support Questionnaire (FSSQ) was used to measure caregivers' perceived social support, and the Center for Epidemiologic Studies Depression Scale assessed their depression.; Results: In this study, 76.9% of the caregivers perceived a high level of social support, and 46.9% were assessed as having depression. Based on multivariable analysis, factors that decrease the likelihood of being depressed are a high level of social support (odds ratio (OR) = 0.311, 95% confidence interval (CI): 0.167-0.579) and having taken holidays in the past 12 months (OR = 0.513, 95%CI: 0.270-0.975). Factors that increase the likelihood of being depressed are being a female caregiver (OR = 2.296, 95%CI: 1.119-4.707), being uninsured (OR = 4.321, 95%CI: 1.750-10.672), being the partner or spouse of the care recipient (OR = 3.832, 95%CI: 1.546-9.493), and the number of hours of care (OR = 1.053, 95%CI: 1.021-1.085).; Conclusion: Higher levels of perceived social support and holidays were associated with lower levels of depression. However, being female, being the care recipient's partner or spouse, being uninsured, and having long care periods had detrimental effects. Interventions to preserve and enhance perceived social support could help improve depressive symptoms in informal caregivers. Additionally, support should be available to caregivers who are women, uninsured, and the care recipient's partner or spouse, as well as those who provide care for long hours, to ensure they have respite from their caregiving role.
Aim: The present study aimed to examine the associations among behavioral and psychological symptoms of dementia (BPSD) of persons with dementia (PWD), care burden and family‐to‐work conflict (FWC) of employed family caregivers. Method: A cross‐sectional study was carried out with employed adult daughter or son (or in‐law) caregivers for PWD from two rural cities in Japan. FWC, care burden and the degree of BPSD were evaluated by the Survey Work‐Home Interaction‐NijmeGen, Zarit Burden Scale‐Short Version and Dementia Behavior Disturbance Scale, respectively. Of the 200 questionnaires distributed, 130 were returned. A total of 53 respondents were not employed, and seven questionnaires had missing data for demographic variables, Survey Work‐Home Interaction‐NijmeGen, Zarit Burden Scale‐Short Version or Dementia Behavior Disturbance Scale. Thus, complete data from 70 respondents were analyzed through structural equation modeling. Results: The mean age of employed family caregivers was 56 years, and 34 (48.5%) were men. The mean age of PWD was 84 years, and there were 68 (68.6%) men. The path model with a good fit was shown (root mean square error of approximation 0.136, comparative fit index 0.960 and goodness of fit index 0.965). The path model showed that BPSD affected FWC, and that the association was partially mediated by care burden. Conclusions: The results show that a decrease in not only care burden, but also BPSD, of PWD is important for employed family caregivers to reduce their FWC and maintain their work–life balance.
Background: Dementia is prevalent among older adults and frequently causes dependence on family caregivers. Caregivers may experience a form of stigmatization called affiliate stigma that negatively affects their mental health. The current study sought to establish the psychometric properties of a tool to measure affiliate stigma among Iranian caregivers. Methods: Overall, 541 caregivers of older people with dementia were included in this cross sectional study. Several measures were used to assess the psychometric properties of the Affiliate Stigma Scale (ASS) including the Zarit Burden Interview (ZBI), Hospital Anxiety and Depression Scale (HADS), Short Form 12 (SF-12), Rosenberg Self-Esteem Scale (RSES), and Multidimensional Scale of Perceived Social Support (MSPSS). Convergent and discriminate validity were examined.Exploratory and confirmatory factor analyses were utilized to assess the factor structure of the Ass and a Rasch model was used to evaluate the measurement functioning of the scale. Results: Factor loadings ranged from 0.69 to 0.83 and test-retest reliability from 0.72 to 0.89.Item difficulty ranged widely from -0.66 to 0.89. No considerable differential item functioning (DIF) was found across gender. Confirmatory factor analysis confirmed the three cognitive,effective, and behavioral dimensions of the scale (comparative fit index [CFI]=0.931 to 0.995,root mean square error of approximation [RMSEA]=0.046 to 0.068). Internal consistency was acceptable (Cronbach's α: 0.88 to 0.94). Significant and positive relationships were found between affiliate stigma and depression, anxiety, and care giving burden (β =0.35 to 0.46). Conclusion: The ASS is a psychometrically valid measure for assessing affiliate stigma in Iranian caregivers of people with dementia. Application of this tool among other caregivers, language sand cultures deserves further study.
Purpose: To know the health perceived by the family caregivers of Alzheimer's disease, according to the relationship of kinship and the duration of the care in mild‐to‐moderate stage of dementia. Design and Methods: Cross‐sectional descriptive study in 255 caregivers. The instruments used were an ad hoc questionnaire and the Goldberg General Health Questionnaire (GHQ‐28). Findings: The presence of acute and chronic mental pathology has been observed. Specifically in the spouses and children, severe depression and social dysfunction, and in periods of care between 2 and 5 years, mainly anxiety and insomnia have been observed. Practice Implications: The relationship of kinship and the duration of care must be taken into account in the planning of specific interventions in these caregivers.
Background: Family members frequently provide long-term care for stroke survivors, which can lead to psychological strain, particularly in the presence of cognitive decline.; Objectives: To profile anxious and depressive symptoms of family caregivers at 5 years post-stroke, and to explore associations with stroke survivor cognitive decline.; Methods: As part of a 5-year follow-up of the Action on Secondary Prevention Interventions and Rehabilitation in Stroke (ASPIRE-S) cohort of stroke survivors, family members completed a self-report questionnaire. Symptoms of anxiety and depression were assessed using the HADS-A and CES-D. Cognitive decline in stroke survivors was assessed from the caregiver's perspective using the IQCODE, with cognitive performance assessed by the MoCA. Data were analyzed using logistic regression models.; Results: 78 family members participated; 25.5% exhibited depressive symptoms, 19.4% had symptoms of anxiety. Eleven stroke survivors (16.7%) had evidence of cognitive decline according to both the IQCODE and MoCA. Family members of stroke survivors with cognitive decline were significantly more likely to report symptoms of depression [age-adjusted OR (95% CI): 5.94 (1.14, 30.89)] or anxiety [age-adjusted OR (95% CI): 5.64 (1.24, 25.54)] than family members of stroke survivors without cognitive decline.; Conclusions: One-fifth of family caregivers exhibited symptoms of anxiety and one-quarter symptoms of depression at 5 years post-stroke. Stroke survivor cognitive decline was significantly associated with both depressive and anxious symptoms of family caregivers. Family members play a key role in the care and rehabilitation of stroke patients; enhancing their psychological wellbeing and identifying unmet needs are essential to improving outcomes for stroke survivors and families.
Background and Purpose: This study aimed was to measure the quality of life, fatigue, stress, and depression in a consecutive sample of caregivers of multiple sclerosis (MS) patients.; Methods: We included data from 131 consecutive caregivers of MS patients [age=51.2±12.8 years (mean±SD), males=53.4%, duration of caregiving=10.0±6.3 years]. We assessed the quality of life, fatigue, stress, and depression of the caregivers using the 36-item Short Form Health Survey, Krupp Fatigue Severity Scale, Kingston Caregiver Stress Scale, and Hamilton Scale for Depression, respectively. The disability status of the patients was assessed using the Kurtzke Expanded Disability Status Scale. We used linear regression models to identify possible correlations between all of the aforementioned scales, while multivariable logistic regression models were employed to assess the correlations of caregiver fatigue with caregiver characteristics and patient disability.; Results: The linear regression analyses revealed that caregiver fatigue was positively associated with stress and negatively correlated with both physical health status and mental health status. Caregiver stress was positively associated with depression and negatively correlated with both physical health status and mental health status. Depression was negatively correlated with both caregiver physical health status and mental health status. In multivariable logistic regression analysis, caregiver fatigue was found to be independently associated with education status [odds ratio (OR)=0.61, 95% CI=0.37 to 0.99], history of chronic disease (OR=5.52, 95% CI=1.48 to 20.55), other chronic diseases in the family (OR=7.48, 95% CI=1.49 to 37.47), and the disability status of the patient (OR=1.36, 95% CI=1.03 to 1.80).; Conclusions: Fatigue, stress, and depression in caregivers of MS patients are negatively correlated with their physical health status and mental health status. Caregiver fatigue is independently associated with education status, history of chronic disease, other chronic disease in the family, and patient disability.
Background and Objectives: This paper describes the development of an item pool for a needs-based self-report outcome measure of the impact of caring for a relative, friend or neighbour with dementia on carer quality of life. The aims are to give a detailed account of the steps involved and describe the resulting item pool.; Methods: Seven steps were followed: generation of an initial item set drawing on 42 needs-led interviews with carers; a content and face validity check; assessment of psychometric potential; testing of response formats; pre-testing through cognitive interviews with 22 carers; administration rehearsal with two carers; and final review.; Results: An initial set of 99 items was refined to a pool of 70 to be answered using a binary response format. Items were excluded due to overlap with others, ceiling effects, ambiguity, dependency on function of the person with dementia or two-part phrasing. Items retained covered a breadth of areas of impact of caring and were understandable and acceptable to respondents.; Conclusions: The resulting dementia carer-specific item pool reflects the accounts of a diverse sample of those who provide care for a person with dementia, allowing them to define the nature of the impact on their lives and resulting in a valid, acceptable set of items.
Background: Stroke is highly debilitating and requires long-term care. Informal caregivers of stroke survivors play important roles in stroke rehabilitation. Caring for stroke survivors can negatively affect the caregivers' well-being and may adversely impact on their caregiving quality and subsequently on stroke survivors' well-being. There seems to be a dearth of research on the relationships between caregivers' and stroke survivors' well-being.; Aims and Objectives: This study was designed to determine the relationships among informal caregivers' burden and quality of life (QOL) and stroke survivors' QOL and community reintegration.; Methods: This ethically certified cross-sectional survey involved 82 stroke survivors (mean age = 60.48 ± 11.13 years) and their 82 primary caregivers (mean age = 36.13 ± 13.69 years) consecutively recruited from seven conveniently sampled tertiary hospitals in Nigeria. Caregivers Strain Index, Igbo-culture adapted Maleka Stroke Community Reintegration Measure and Short-Form 36-item Health Survey questionnaires were used to assess the caregivers' burden, survivors' community reintegration and QOL (of survivors and caregivers), respectively. Data were analysed using descriptive statistics, Spearman rank, Mann-Whitney U and Kruskal-Wallis tests at alpha level of 0.05.; Results: The mean stroke survivors' community reintegration and QOL were 34.05 ± 21.54% and 34.93 ± 16 ± 49%, respectively. The mean caregivers' QOL and burden scores were 74.49 ± 12.61% and 9.13 ± 3.18, respectively. About 80.5% of the caregivers experienced significant burden. Stroke survivors' QOL and community reintegration, and caregivers' QOL and burden significantly correlated with one another (p < 0.05). Poststroke duration, survivor-caregiver cohabitation duration, survivors' community-dwelling duration and daily care-giving hours significantly correlated with each of stroke survivors' community reintegration and QOL, and caregivers' burden and QOL (p < 0.05).; Conclusions: Stroke survivors' community reintegration and QOL were poor while caregivers' had moderate QOL and high prevalence of significant burden. Significant correlations exist between caregivers' well-being and stroke survivors' QOL and community reintegration. Interventions targeted at reducing caregivers' burden may help improve both caregivers and survivors' well-being.
Background and aims: Since May 2011, over 23 000 caregivers of Veterans seriously injured on or after September 11, 2001 have enrolled in the Program of Comprehensive Assistance for Family Caregivers (PCAFC). PCAFC provides caregivers training, a stipend, and access to health care. The aim of this study is to describe the characteristics of caregivers in PCAFC and examine associations between caregiver characteristics and caregiver well-being outcomes.; Methods: We sent a web survey invitation to 10 000 PCAFC caregivers enrolled as of September 2015. Using linear and logistic regressions, we examine associations between PCAFC caregiver characteristics and caregiver outcomes: perceived financial strain, depressive symptoms (Center for Epidemiologic Studies Depression Scale [CESD-10]), perceived quality of Veteran's Veterans Health Administration (VHA) care, and self-reported caregiver health.; Results: We had complete survey data for 899 respondents. Since becoming a caregiver, approximately 50% of respondents reported reducing or stopping work. Mean time spent providing care was 3.8 years (median 3, IQR 1-5) with an average of 4.9 weekdays (median 5, IQR 5-5) and 1.9 weekend days (median 2, IQR 2-2). The mean CESD-10 score was 8.2 (median 7, 4-12), at the cutoff for screening positive for depressive symptoms. A longer duration of caregiving was associated with having 0.08 increase in rating of financial strain (95% CI, 0.02-0.14). Caregiver rating of the Veteran's health status as "fair" or better was a strong predictor of better caregiver outcomes, ie, self-reported caregiver health. However, higher levels of education were associated with worse caregiver outcomes, ie, lower global satisfaction with VHA care, higher CESD-10 score, and higher rating of financial strain.; Conclusions: Higher depressive symptoms among longer duration caregivers, coupled with high rates of reductions in hours worked, suggest interventions are needed to address the long-term emotional and financial needs of these caregivers of post-9/11 Veterans and identify subpopulations at risk for worse outcomes.
Objective: Thoracic radiotherapy (TRT) may result in toxicities that are associated with performance declines and poor quality of life (QOL) for patients and their family caregivers. The purpose of this randomized controlled trial was to establish feasibility and preliminary efficacy of a dyadic yoga (DY) intervention as a supportive care strategy. Methods: Patients with stage I to III non-small cell lung or esophageal cancer undergoing TRT and their caregivers (N = 26 dyads) were randomized to a 15-session DY or a waitlist control (WLC) group. Prior to TRT and randomization, both groups completed measures of QOL (SF-36) and depressive symptoms (CES-D). Patients also completed the 6-minute walk test (6MWT). Dyads were reassessed on the last day of TRT and 3 months later. Results: A priori feasibility criteria were met regarding consent (68%), adherence (80%), and retention (81%) rates. Controlling for relevant covariates, multilevel modeling analyses revealed significant clinical improvements for patients in the DY group compared with the WLC group for the 6MWT (means: DY = 473 m vs WLC = 397 m, d = 1.19) and SF-36 physical function (means: DY = 38.77 vs WLC = 30.88; d = .66) and social function (means: DY = 45.24 vs WLC = 39.09; d = .44) across the follow-up period. Caregivers in the DY group reported marginally clinically significant improvements in SF-36 vitality (means: DY = 53.05 vs WLC = 48.84; d = .39) and role performance (means: DY = 52.78 vs WLC = 48.59; d = .51) relative to those in the WLC group. Conclusions: This novel supportive care program appears to be feasible and beneficial for patients undergoing TRT and their caregivers. A larger efficacy trial with a more stringent control group is warranted.
Objective: Assess the burden and identify the burden-related factors in home-baded informal caregivers of bedridden elderly attended by the Family Health Strategy. Methods: Analytical, cross-sectional study involving 208 informal caregivers. The data were collected between February and July 2017 by applying the characterization script and the Informal Caregiver Burden Assessment Questionnaire. For analysis purposes, the Statistical Package for the Social Science, version 20.0 was used. Descriptive (central trend and dispersion, absolute and relative frequency measures) and inferential (Mann-Whitney and Kruskal-Wallis tests; Spearman correlation test) statistics were applied. Results: The mean total burden score was 71.1 (±26.3). A statistically significant difference was observed in the total burden and domain scores according to the variables: marital status of caregiver, degree of kinship with the elderly and all clinical variables of the caregivers. A positive correlation was registered between the burden and the caregiver's age and between the burden and number of daily hours spent on care. Conclusion: The burden was higher for the partners, caregivers with comorbidities, pain related to the activity performed and caregivers who considered their health as regular.
Aims: Very little works have been reported on the issues of burden perceived by the caregivers of head-and-neck cancer (HNC) patients. Job of the caregiver is complex, and it limits their social, psychological, and economical well-being. Our study aims at assessing caregivers' strain during radiation therapy (RT) of HNC patients using the Modified Caregivers' Strain Index (MCSI) Scale. Materials and Methods: In this single-institutional cross-sectional study, we interviewed caregivers of HNC patients undergoing curative RT. Along with MCSI, a 13-point questionnaire, which was self-administered in local languages; we collected baseline data of patients and their caregivers. Scores were evaluated. For each question, score varies 0–2. Higher the Median Hazard Score (H Score), more was the level of the strain. Results: We interviewed 24 participants. Response rate was 100%. About 45.8% of patients were in Stage III. The median age of caregivers was 40 years; 58.3% were male, 79.2% were employed, and 58.3% were belonging to the upper-lower class. Nearly 66.6% were spouse of the patients and 70.8% belong to joint family. In MCSI score analysis, H Score was 22 (range 14) with a minimum score of 14 and maximum score of 26. The most common score was 20. About 65.1% of participants responded Score 2 in all aspects of strain indices. Travel time had a significant positive association with total H Scores (Pearson's r = 0.663, P < 0.05). Conclusion: Majority of the caregivers was suffering from severe physical, personal, emotional, and social/financial strain. This issue must be addressed in holistic cancer care.
Background: Family caregivers of operated neurosurgery patients function as informal extensions of the health system. But they are untrained and unprepared for their new role. It has been felt that their problems related to care provision can be resolved by appropriate training.; Aim: This study aimed to compare the impact of self-instruction manual-based training of family caregivers of operated neurosurgery patients on their knowledge regarding care provision and care practices.; Setting: Tertiary care hospital setting located in North India.; Design: Randomized controlled trial.; Materials and Methods: A randomized controlled trial was done among the operated neurosurgery patients and their caregiver dyads (n = 90). They were randomly allocated to receive either self-instruction manual and one-to-one training (TP1) or self-instruction manual only (TP2). Block randomization method was used. Sequentially numbered sealed envelope was used for allocation concealment. Monthly follow-up was done for 3 months. The primary outcome measure was knowledge gain of the caregivers.; Statistical Analysis Used: Chi-square test, Student's t-test, paired t-test, repeated measures analysis of variance, and Bonferroni's correction were used.; Results: The attrition rate was 15.5%. Intention-to-treat analysis was followed. Caregivers in the TP1 group had significant knowledge gain (95% confidence interval of mean difference 9.4-14.5, P < 0.05). The number of caregivers who had followed correct caregiving practices was significantly more in the TP1 group.; Conclusion: Training of caregivers by providing information along with one-to-one training is an effective strategy for improving the knowledge and skills of caregivers regarding care provision of the operated neurosurgery patients.
Objectives: Familism is a cultural value that has been shown to be important for understanding the dementia caregiving process. The aim of this study is to analyze the psychometric properties of the Revised Familism Scale (RFS).; Method: Face-to-face assessments were done with 199 dementia family caregivers. Exploratory factor analysis, discriminant validity, and reliability analyses of the RFS were carried out.; Results: The results suggest that the RFS has good psychometric properties and is composed of three factors: "Familial interconnectedness", "Familial obligations", and "Extended family support".; Conclusion: The RFS seems to be a reliable measure of familism, a multidimensional construct measuring a relevant cultural value for dementia family caregivers.
Hematopoietic cell transplant (HCT) can cause significant distress in patients and their informal caregivers. Despite advances in reduced-intensity conditioning and supportive care, few recent studies have reported rates of clinically significant post-traumatic stress disorder (PTSD) symptomatology. Goals of the current study were to examine rates of PTSD and distress in patients and caregivers and to identify sociodemographic and clinical risk factors for PTSD. As part of an annual survivorship survey, 2157 HCT recipients and their caregivers were mailed self-report measures of PTSD and distress. Patients also completed self-report measures of sociodemographic information (eg, age, sex, employment status). Clinical variables (eg, time since transplant, transplant type) were captured in the transplant database. A total of 691 recipients (56% age 60 or above at the time of survey, 47% women, median 10.1 years post-HCT) and 333 caregivers provided PTSD data and were included in the current analyses. More caregivers reported PTSD (6.6%) than patients (3.3%; P =.02). Patients or caregivers who had PTSD reported significantly higher distress related to uncertainty, family strain, medical demands, finances, identity, and health burden (P <.0001) compared with those without PTSD. Patient but not caregiver PTSD was associated with more recent transplant (P =.01 and P =.16, respectively). Rates of PTSD are relatively low in long-term survivors of HCT and their caregivers. Nevertheless, results are consistent with other studies of cancer caregiving suggesting that caregivers often experience greater distress than patients. Timely referral to psychosocial services should be offered to both HCT recipients and caregivers reporting symptoms of PTSD.
Objectives: This study examined whether geographical proximity is a predictor of depressive symptoms, and whether family and friend support can moderate the relationship between geographical proximity and depressive symptoms. Method: A survey of 557 adult child primary caregivers was conducted in Shanghai, China in 2013. Geographical proximity was measured as a categorical variable: coresidence, short distance (less than 30 minutes' travel time), and long distance (more than 30 minutes' travel time). Family and friend support were assessed using the Multidimensional Scale of Perceived Social Support. Depressive symptoms were evaluated using the Center on Epidemiologic Studies Depression Scale. Multiple regression analyses and interaction terms were used to test the moderating roles of family and friend support. Results: Adult child caregivers who live more than 30 minutes away from care recipients experienced higher depressive symptoms than coresiding caregivers (β =.114, p <.01). Family support (β = −.408, p <.05) and friend support (β = −.235, p <.05) were protective factors that lessened depressive symptoms for long-distance adult child caregivers. Conclusion: This study adds spatial dimension to caregiving literature and extends stress process theory. These findings have important implications for service planning and social support for adult child caregivers.
Chinese family caregivers of dementia patients suffer considerable grief in their caregiving activity; little research has been conducted on dementia caregivers' grief in China. This study aims to (a) confirm the factor structure of the Mandarin version of the Marwit-Meuser Caregiver Grief Inventory-Short Form (MM-CGI-SF), (b) evaluate the levels of family caregivers' grief, and (c) explore the best predictors of family caregivers' grief. A cross-sectional study was conducted to collect data from 91 caregivers of dementia patients. The Mandarin version of the MM-CGI-SF had a three-factor structure. Family caregivers' grief was at an average level. Family caregivers' monthly household income and caring time per day predicted their own grief. The Mandarin version of the MM-CGI-SF possessed the same factor structure as the original English version, and the Chinese family caregivers experienced an average grief which was predicted by the monthly household income and caring time per day of the caregivers.
Purpose: To evaluate the quality of life (QoL) and social support among family caregivers of a family member with a mental illness and to identify factors associated with the QoL.; Methods: This is a cross-sectional study, where participants were recruited and independently interviewed using a questionnaire, consisting of demographic characteristics, the Medical Outcome Survey SF-36 form, and social support rating scales. Multiple stepwise regression analysis was used to analyse the factors related to QoL.; Results: 181 family caregivers were recruited in Shandong province, China. On a composite QoL score, family caregivers perceived that their QoL was poor (68.3), especially in the aspects of role-physical (61.3), role-emotional (57.6) and mental health (63.0). We also found family caregivers received low social support, especially in objective support and utilization of social support. Patient's illness state, care time, financial burden and objective support were significantly correlated to caregivers' QoL in the physical component score (PCS). Patient's illness state, patient's marital status, family monthly income, caregiver's knowledge about the illness, caregivers coordinating caring, life and work, subjective support received and utility of support were significantly associated with caregivers' QoL in the mental component score (MCS).; Conclusions: Social support had a significant correlation with caregivers' QoL. Caregivers should be encouraged to request assistance from other family members and friends in providing care, especially when caregivers are unemployed or long-time carers. Mental health education campaigns and helping families to maintain and enhance a supportive social network may provide useful means to improve caregivers' QoL.
In numerous countries, lay (family) caregivers are the primary providers of care for community-dwelling patients with a tracheostomy.; Purpose: The purpose of this descriptive study was to determine health care practices and the burden on family caregivers for patients with a tracheostomy living at home.; Methods: The research population included 50 caregivers (average age 55.60 ± 1.39 years; 25 [50%] female) who provided care to 50 patients (average age 63.50 ± 1.72 years; 35 [70%] male) who were discharged from the otorhinolaryngology clinic of an education and research hospital in Turkey. Patient and caregiver characteristic data and tracheostomy care practices were collected via face-to-face interviews between caregivers and researchers using paper-and-pencil questionnaires. The 18-item Zarit Caregiver Burden Interview also was completed; responses to statements are rated on a scale of 0-4, where 0 = never, 1 = rarely, 2 = sometimes, 3 = often, and 4 = almost always. Total scale scores range from 0 to 88; higher scores indicate greater burden. Data were transferred into a statistical analysis program.; Results: The mean score for the Zarit Caregiver Burden Scale was 42.44 ± 1.93, inferring caregivers were moderately burdened. Caregiver burden scores were significantly higher among female caregivers, caregivers without health insurance, caregivers requiring help, caregivers with chronic illness, more daily care time (hours), and duration of total care (months). Patient burden scores were significantly higher among persons requiring provision of daily nebulization and oxygen therapy, external cannula cleaning, and daily patient care.; Conclusion: This study illuminates the burdens faced by lay/family caregivers of patients with a tracheostomy and identifies for community health clinicians the challenges, care requirements at home, and burden of family caregivers that must be addressed.
Purpose: The primary objective of this study was to quantify cancer family caregiver (FCG) quality of life (QOL) in a Southern Albanian population and to determine whether differences exist between 4 domains of QOL (physical, psychological, social, and spiritual). This study also sought to compare QOL in our cohort to QOL in historical studies that used the same survey instrument, and to examine correlations between demographic characteristics and QOL to identify any high-risk groups.; Methods: A sample of 40 FCGs was recruited at the Mary Potter Palliative Care Clinic in Korçe, Albania. Each participant completed the City of Hope Quality of Life (Family Version), a validated 37-question instrument that measures caregiver well-being in 4 domains: physical, psychological, social, and spiritual well-being.; Results: There were no significant differences between the composite scores of the 4 QOL domains in our study. However, there were differences when comparing self-reported QOL between domains ("Rate your overall physical/psychological/social/spiritual well-being"). The QOL measured in our study was significantly lower than in 3 studies from the United States that used the same questionnaire. There were no significant correlations between demographic groups and QOL.; Conclusions: This study examines the impact that the paucity of palliative services has on the QOL of Albanian cancer FCGs. Although there were no domains of QOL or demographic groups identified in our study that were faring significantly worse than others, the poor overall QOL provides further evidence to support the continued development of palliative services for both patients and family members in Albania.
Introduction: In palliative care, family caregivers are often faced with experiences of grief in anticipation of the loss of a close person. An instrument designed to measure this form of grief is the Anticipatory Grief Scale, which includes 27 items and has been used in several studies in various contexts. However, the instrument has not been validated.; Aim: The aim was to evaluate the psychometric properties, focusing on the factor structure, of the Anticipatory Grief Scale in a sample of family caregivers in palliative care.; Methods: The study had a cross-sectional design. Data were collected from an intervention study in palliative home care that took place between 2013 and 2014. In total, 270 family caregivers in palliative care completed a baseline questionnaire, including the Anticipatory Grief Scale. The factor structure of the scale was evaluated using exploratory factor analysis.; Results: The initial factor analysis suggested a four-factor solution, but, due to weak communalities, extensive crossloadings, and item inconsistencies, the model was problematic. Further analysis supported that the scale should be reduced to 13 items and two factors. The two subscales captured the behavioral and emotional reactions of grief in family caregivers in palliative care and were named Behavioral reactions and Emotional reactions. This modified version will hereafter be named AGS-13.; Conclusions: This validation study of the Anticipatory Grief Scale resulted in a revised two-factor model, AGS-13, that appears to be promising for use in palliative care but needs to be tested further.
Spillover effects on the welfare of family members may refer to caregiver health effects, informal care time costs, or both. This review focuses on methods that have been used to measure and value informal care time and makes suggestions for their appropriate use in cost-of-illness and cost-effectiveness analyses. It highlights the importance of methods to value informal care time that are independent of caregiver health effects in order to minimize double counting of spillover effects. Although the concept of including caregiver time costs in economic evaluations is not new, relatively few societal perspective cost-effectiveness analyses have included informal care, with the exception of dementia. This is due in part to challenges in measuring and valuing time costs. Analysts can collect information on time spent in informal care or can assess its impact in displacing other time use, notably time in paid employment. A key challenge is to ensure appropriate comparison groups that do not require informal care to be able to correctly estimate attributable informal care time or foregone market work. To value informal care time, analysts can use estimates of hourly earnings in either opportunity cost or replacement cost approaches. Researchers have used widely varying estimates of hourly earnings. Alternatively, stated-preference methods (i.e. contingent valuation, conjoint analysis) can be used to value the effect of informal care on utility, but this can entail double counting with health effects. Lack of consensus and standardization of methods makes it difficult to compare estimates of informal care costs.
Purpose: The older population has reached to 8.5%, and the prevalence of frailty is reported as 39.2% in Turkey. The purpose of the study was to assess caregiver burden in families who care for frail older adults in Turkish culture.; Method: This descriptive study was conducted in Turkey between June and October 2017. Frail older adults who had no severe cognitive impairment were included. Data were measured using the Older Adult Information Form, Edmonton Frailty Scale, Caregiver Information Form, and Zarit Burden Interview.; Results: In total, 131 older person/caregiver dyads were analyzed; the Zarit Burden Interview mean score was 37.59 ± 18.20. Caregivers with less education and providing care more than 8 hours experienced a higher burden ( p < .05). The severity of frailty significantly correlated with the caregiver scores ( R = .36, p < .01).; Conclusion: The caregiver burden in Turkish family caregivers was found mild to moderate and correlated with the degree of frailty. Policymakers should focus on culture-specific formal caregiver services.
Background: Families and friends provide a considerable proportion of care for patients and elderly people. Caregiving can have substantial effects on caregivers' lives, health, and well-being. However, because clinical trials rarely assess these effects, no information on caregiver burden is available when evaluating the cost effectiveness of treatments. Objective: This study develops an algorithm for estimating caregiver time using information that is typically available in clinical trials: the EQ-5D scores of patients and their gender. Methods: Four datasets with a total of 8012 observations of dyads of caregivers and a gamma model with a log-link estimated with the Bayesian approach were used to estimate the statistical association between patient scores on the EQ-5D-3L dimensions and the numbers of hours of care provided by caregivers during the previous week. The model predicts hours of care as mean point estimates with 95% credible intervals or entire distributions. Results: Model predictions of hours of care based on the five EQ-5D dimensions ranged from 13.06 (12.7-14.5) h/week for female patients reporting no health problems but receiving informal care to 52.82 (39.38-66.26) for male patients with the highest level of problems on all EQ-5D dimensions. Conclusions: The iCARE algorithm developed in this study allows researchers who only have patient-level EQ-5D data to estimate the mean hours of informal care received per week, including a 95% Bayesian credible interval. Caregiver time can be multiplied with a monetary value for caregiving, enabling the inclusion of informal care costs in economic evaluations. We recommend using the tool for samples that fall within the confidence intervals of the characteristics of our samples: men (age range 47.0-104.2 years), women (age range 55-103 years).
Objective: Idiopathic Parkinson's disease (IPD) is a chronic progressive neurodegenerative movement disorder characterized by motor and non-motor symptoms that affects patients' quality of life and caregiver burden. The aim of our study was to assess the caregiver burden (CB) in early and late stages of disease and to search if there was a relationship between quality of life and CB.; Methods: A total of 74 patients who were diagnosed as having IPD by a movement disorder neurologist according to United Kingdom Brain Bank Criteria and their caregivers were randomly selected for participation the study. Staging of PD was performed by the neurologist based on the Hoehn and Yahr (H&Y) Scale. Disease severity was determined using the Unified Parkinson's Disease Rating Scale (UPDRS). CB was evaluated using the Zarit Caregiver Burden Inventory (ZCBI). The Hospital Anxiety and Depression Scale (HADS) and the Beck Depression Inventory (BDI) were used to assess anxiety and depressive symptoms in patients with IPD and their caregivers. The Short-Form Health Survey instrument (SF-36) was used to evaluate quality of life of the patients. The Mini-Mental State Examination (MMSE) was administered to patients to evaluate gross cognitive status.; Results: Seventy-four patients (male, 58.1%) were included in the study. The mean age of patients was 66.18±8.5 and the mean duration of disease was 67.23±41.8 months. According to the H&Y scale, the patients were divided into two groups; stage I-II as early stage and stage III-V as late stage. Group 1 (H&Y I-II) consisted of 40 patients, and group 2 (H&Y III-V) comprised 34 patients. The mean duration of disease and UPDRS scores were significantly higher in group 2 (p=0.003, p=0.001, respectively). Significant differences were found in group 2 according to BDI. There were significant differences between group 1 and 2 according to SF-36 subdomains such as general health, emotional role, social functioning, pain, and mental health (p=0.019, p=0.038, p=0.005, p=0.004, p=0.014, respectively). However, there were no significant differences between these two groups concerning CB.; Conclusion: Although CB was found in 35 (47.3%) caregivers in our study, we found no significant differences between the caregivers of patients with early and late-stage IPD patients. We thought that this might be due to strong family relationships and cultural dynamics in Turkey. Burden was found to be higher in depressive patients' CGs and CGs who had depressive symptoms. It is important to recognize depressive symptoms earlier to protect the relationship between the CG and the patient because the main providers of care are family members.
Background: Caring role, especially in chronic diseases, has a negative impact on the health of family caregivers and can affect their quality of life. Therefore, this study aimed to investigate the care burden and quality of life in family caregivers of hemodialysis patients and their relationship with some characteristics of caregivers and patients.; Methods: This study was conducted as a descriptive-analytic study in Isfahan from January to February 2017. Sampling was done using census. The number of participants was 254. The data gathering tools consisted of a three-part questionnaire including demographic characteristics, the Zarit questionnaire for caring burden, and SF-36 quality of life questionnaire. Data were analyzed using descriptive statistics, Pearson correlation coefficient test, Spearman's coefficient, ANOVA, and univariate general linear regression. A significant level of 5% was considered.; Results: The mean scores of the quality of life and caring burden were 30.54±9.89 and 44.98±6.82, respectively in caregivers. The age of the patient under care (P<0.001), cost of medications (P=0.008), and hours of care in 24 hours (P<0.001) had a significant relationship with care givers' quality of life. Also, univariate general linear regression revealed that care burden had a significant relationship with the quality of life (P=0.003).; Conclusion: Family caregivers who experienced more caring burden had a low quality of life. The researchers suggest that supportive and educational programs should be designed and implemented for this group of patients and their caregivers.
Objective: To determine the frequency of high burden of care on family members of patients with Schizophrenia. Study Design: Descriptive, Cross-sectional study. Place and Duration: Department of Psychiatry, Civil Hospital Karachi for Six months from 15th September, 2014 till 15th March, 2015. Methodology: Caregivers fulfilling the selection criteria were enrolled. "Zarit Burden Interview" (ZBI) was used for assessment of high burden over caregivers of schizophrenic patients. Different demographic factors like gender, age, education and employment status were also assessed. Results: Out of 150 caregivers, majority 83.3% were married followed by 9% being single and 9% being widow. In this study 58% caregivers had high burden as measured on ZBI. Out of those having high burden 52.8% were males while 47.2% were females. While gender distribution in caregivers having no burden 65% was males and 35% were females. Conclusion: This study reveals a high burden among caregivers living with patients of Schizophrenia.
Design: Validation cross-sectional study. Objectives: Even though caregiver burden (CB) represents a well-recognised concern among caregivers of people with a spinal cord injury (SCI), there are no specific questionnaires designed for its evaluation. This study aimed to assess the psychometric properties of the Caregiver Burden Inventory in Spinal Cord Injury (CBI-SCI), which was modified from its original version, and specifically its construct and reliability. Setting: Multicentre study in four urban spinal units across Italy. The CBI-SCI was administered to family caregivers in outpatient clinics.Methods: CBI-SCI was administered in a toolset composed of a sociodemographic questionnaire, the Family Strain Questionnaire-Short Form (FSQ-SF), the Short Form-36 (SF-36), and the Modified Barthel Index (MBI). The CBI-SCI construct validity was assessed through an exploratory factor analysis. The internal consistency of the questionnaire was examined using Cronbach's alpha (α) coefficient for the total scale and its subscales. Concurrent validity was evaluated performing Pearson's correlation coefficient with all instruments included in the toolset. Results: The CBI-SCI was administered to 176 participants from February 2016 to September 2017. Factor analysis highlighted the five-factored structure of the questionnaire. The total scale Cronbach's α was 0.91 (p < 0.001). All the five subscales of CBI-SCI showed an acceptable internal consistency, ranging from 0.76 to 0.91 (p < 0.001). Pearson's correlation coefficients of the CBI-SCI with all the administered instruments were statistically significant (p < 0.001), showing congruent relations. Conclusion: The CBI-SCI, due to its validity and reliability, may represent a valuable instrument to evaluate the CB longitudinally in SCI.
Background: The quality of life of family caregivers of patients with advanced cancers is an important concern in oncology care. Yet, there are few suitable measurement scales available for use in Asia. This study aims to develop and evaluate a locally derived measurement scale in English and Chinese to assess the quality of life of family caregivers of patients with advanced cancers in Singapore.; Methods: Scale contents were generated from qualitative research that solicited inputs from family caregivers. Six hundred and twelve family caregivers of patients with advanced cancers were recruited, of whom 304 and 308 chose to complete the English and Chinese versions of the quality of life scale, respectively. A follow-up survey was conducted for test-retest reliability assessment. Analyses began with pooling all observations, followed by analyses stratified by language samples and ethnic groups (among English-speaking participants).; Results: Factor analysis identified 5 domains of quality of life. The Root Mean Square Error of Approximation was 0.041 and Comparative Fit Index was 0.948. Convergent and divergent validity of the total and domain scores were demonstrated in terms of correlation with the Brief Assessment Scale for Caregiver and its sub-scales and a measure of financial concern; known-group validity was demonstrated in terms of differences between groups defined by patient's performance status. Internal consistency (Cronbach's alpha) of the total and domain scores ranged from 0.86 to 0.93. Test-retest reliability (intraclass correlation coefficient) ranged from 0.74 to 0.89. Separate analyses of the English- and Chinese-speaking samples and ethnic groups gave similar results.; Conclusion: A new, validated, multi-domain quality of life measurement scale for caregivers of patients with advanced cancers that is developed with inputs from family caregivers is now available in two languages. We call this the Singapore Caregiver Quality Of Life Scale (SCQOLS).
People with mental illness and their family caregivers often perceive public stigma, which may lead to stigma-related stress (or stigma stress). However, no instruments have been developed to measure this stress for family caregivers of people with mental illness. We modified an instrument that measures the stigma stress of people with mental illness (i.e., the cognitive appraisal of stigma as a stressor) and examined the psychometric properties of the scores of the newly developed instrument: the Family Stigma Stress Scale (FSSS). Primary family caregivers of people with mental illness in Southern Taiwan ( n = 300; mean age = 53.08 ± 13.80; 136 males) completed the FSSS. An exploratory factor analysis showed that the FSSS score had two factors; both factor scores had excellent internal consistency (α = .913 and .814) and adequate test-retest reliability ( r = .627 and .533; n = 197). Significant correlations between FSSS factor scores and other instruments supported its concurrent validity and the ability of the FSSS to differentiate between clinical characteristics, for example, having been previously hospitalized or not. The FSSS is a brief and effective measure of the stigma stress of family caregivers of people with mental illness.
Objective To develop new patient-reported outcome (PRO) measures to better understand feelings of loss in caregivers of individuals with traumatic brain injury (TBI). Design Cross-sectional survey study. Setting Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. Participants Caregivers (N=560) of civilians with TBI (n=344) or service members/veterans (SMVs) with TBI (n=216). Interventions Not applicable. Main Outcome Measures Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) Feelings of Loss-Self and TBI-CareQOL Feelings of Loss-Person with Traumatic Brain Injury item banks. Results While the initial exploratory and confirmatory factor analyses of the feelings of loss item pool (98 items) potentially supported a unidimensional set of items, further analysis indicated 2 different factors: Feelings of Loss-Self (43 items) and Feelings of Loss-Person with TBI (20 items). For Feelings of Loss-Self, an additional 13 items were deleted due to item-response theory-based item misfit; the remaining 30 items had good overall model fit (comparative fit index [CFI]=0.96, Tucker-Lewis index [TLI]=.96, root mean squared error of approximation [RMSEA]=.10). For Feelings of Loss-Other, 1 additional item was deleted due to an associated high correlated error modification index value; the final 19 items evidenced good overall model fit (CFI=0.97, TLI=.97, RMSEA=.095). The final item banks were developed to be administered as either a Computer Adaptive Test (CAT) or a short-form (SF). Clinical experts approved the content of the 6-item SFs of the 2 measures (3-week test-retest was r =.87 for Feelings of Loss-Self and r =.85 for Feelings of Loss-Person with TBI). Conclusions The findings from this study resulted in the development of 2 new PROs to assess feelings of loss in caregivers of individuals with TBI; TBI-CareQOL Feelings of Loss-Self and TBI-CareQOL Feelings of Loss-Person with TBI. Good psychometric properties were established and an SF was developed for ease of use in clinical situations. Additional research is needed to determine concurrent and predictive validity of these measures in the psychological treatment of those caring for persons with TBI. Highlights • Feelings of loss are common in caregivers of persons with traumatic brain injury. • Two new self-report measures of caregiver feelings of loss were developed. • These self-report measures can help identify feelings of entrapment in caregivers.
Objective To develop a new measurement system, the Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL), that can evaluate both general and caregiving-specific aspects of health-related quality of life (HRQOL) in caregivers of persons with traumatic brain injury (TBI). Design New item pools were developed and refined using literature reviews, qualitative data from focus groups, and cognitive debriefing with caregivers of civilians and service members/veterans with TBI, as well as expert review, reading level assessment, and translatability review; existing item banks and new item pools were assessed using an online data capture system. Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses were utilized to develop new caregiver-specific item banks. Known-groups validity was examined using a series of independent samples t tests comparing caregivers of low-functioning vs high-functioning persons with TBI for each of the new measures, as well as for 10 existing Patient-Reported Outcomes Measurement Information System (PROMIS) measures. Setting Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. Participants Caregivers (N=560) of civilians (n=344) or service members/veterans with TBI (n=216). Interventions Not applicable. Main Outcome Measures The TBI-CareQOL measurement system (including 5 new measures and 10 existing PROMIS measures). Results Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses supported the development of 5 new item banks for Feelings of Loss-Self, Feelings of Loss-Person with TBI, Caregiver-Specific Anxiety, Feeling Trapped, and Caregiver Strain. In support of validity, individuals who were caring for low-functioning persons with TBI had significantly worse HRQOL than caregivers that were caring for high-functioning persons with TBI for both the new caregiver-specific HRQOL measures, and for the 10 existing PROMIS measures. Conclusions The TBI-CareQOL includes both validated PROMIS measures and newly developed caregiver-specific measures. Together, these generic and specific measures provide a comprehensive assessment of HRQOL for caregivers of civilians and service members/veterans with TBI. Highlights • The TBI-CareQOL measurement system includes new and existing self-report measures. • Measures were developed specific to caring for someone with traumatic brain injury. • Generic measures also evaluate important quality of life constructs for caregivers.
Objective To examine the reliability and validity of Patient-Reported Outcomes Measurement Information System (PROMIS) measures of sleep disturbance and fatigue in traumatic brain injury (TBI) caregivers and to determine the severity of fatigue and sleep disturbance in these caregivers. Design Cross-sectional survey data collected through an online data capture platform. Setting A total of 4 rehabilitation hospitals and Walter Reed National Military Medical Center. Participants Caregivers (N=560) of civilians (n=344) and service member/veterans (SMVs) (n=216) with TBI. Intervention Not applicable. Main Outcome Measures PROMIS sleep and fatigue measures administered as both computerized adaptive tests (CATs) and 4-item short forms (SFs). Results For both samples, floor and ceiling effects for the PROMIS measures were low (<11%), internal consistency was very good (all α≥0.80), and test-retest reliability was acceptable (all r ≥0.70 except for the fatigue CAT in the SMV sample r =0.63). Convergent validity was supported by moderate correlations between the PROMIS and related measures. Discriminant validity was supported by low correlations between PROMIS measures and measures of dissimilar constructs. PROMIS scores indicated significantly worse sleep and fatigue for those caring for someone with high levels versus low levels of impairment. Conclusions Findings support the reliability and validity of the PROMIS CAT and SF measures of sleep disturbance and fatigue in caregivers of civilians and SMVs with TBI. Highlights • The Patient-Reported Outcomes Measurement Information System (PROMIS) sleep and fatigue measures are both reliable and valid. • The PROMIS sleep and fatigue measures are clinically relevant for caregivers. • Caregivers of persons with brain injury have problems with sleep and fatigue.
Background: Palliative care for older people with life-limiting diseases often involves informal caregivers, but the palliative care literature seldom focuses on the negative and positive aspects of informal caregiving.; Objective: To assess the association of proximity to end of life (EOL) and dementia caregiving with informal caregivers' burden of care and positive experiences and explain differences in outcomes.; Design: Data on 1267 informal caregivers of community-dwelling older people were selected from a nationally representative cross-sectional survey and analyzed using analysis of variance and multivariable regression analyses.; Measurements: The Self-Perceived Pressure from Informal Care Scale and the Positive Experiences Scale were administered to assess caregiver burden and positive experiences with providing care.; Results: Dementia care, both at EOL and not at EOL, was associated with the most caregiver burden relative to regular care. Dementia care not at EOL was associated with the fewest positive experiences, and EOL care not in dementia with the most positive experiences. Only the differences in burden of care could be explained by variables related to stressors based on Pearlin stress-coping model.; Conclusions: Informal caregivers of people with dementia are at risk not only of high caregiver burden but also of missing out on positive experiences associated with caregiving at EOL. Future research should examine how dementia-related factors reduce positive caregiving experiences, in order to make palliative care a positive reality for those providing informal care to community-dwelling persons with dementia.
Objective: This study aims to translate the Caregiver Self-Assessment Questionnaire (CSAQ) into Turkish language and to test its reliability and validity in Turkish informal family caregivers.; Materials and Methods: This is a cross-sectional and methodological study. Eighty family caregivers (54.53 ± 12.07 years; range 25 to 77 years; 65 females, 15 males) were included in the study. Demographic properties of the participants (age, sex, education, occupation, marital status), relationship with care recipient, caregiving time, main diseases of the patients were recorded. After that CSAQ, Caregiver Well-Being Scale (CWBS) and Hospital Anxiety Depression Scale (HADS) were used for data collection. A test-retest interval of seven-days was used to assess the reliability. Internal consistency between the items was assessed by Cronbach's alpha coefficient. For reliability; test-retest reliability, intraclass correlation coefficient, and paired sample t tests were used. Intercorrelation of variables was performed with Spearman's rho tests. A ROC curve and sensitivity and specificity analysis were performed to determine the ability of the CSAQ to predict depression or anxiety.; Results: Totally 80 participants completed test/retest procedures. Content Validity Index values of the Items were sufficient and all items were included in the questionnaire. During exploratory factor analysis, 1 factor with eigenvalues greater than 1 were extracted, explaining 62.36% of the total variance. The corrected item total correlation coefficients for Item 2 and Item 5 were found to be <0.3. Therefore, these two items were omitted. Cronbach's α value was found as 0.90 (excellent level). Test-retest reliability (Intraclass correlation coefficient values range: 0.93-0.97) of the CSAQ was found to be excellent. Statistically negative moderate correlations were detected between CSAQ total score and CWBA basic needs and activities of living sub scores (rho = -0.605, rho = -0.523, p < 0.001), while positive strong correlations were detected between HADS depression and anxiety scores (rho = 0.610, rho = 0.651, p < 0.001). CSAQ score of 9 or greater resulted in a sensitivity of 0.56 and a specificity of 0.87 for depression and sensitivity of 0.84 and a specificity of 0.83 for anxiety. According to the scoring instructions of CSAQ with the positivity of any one of four criteria, we found sensitivity of 0.87 for depression and 0.96 for anxiety.; Conclusion: The Turkish version of the CSAQ is a valid and reliable questionnaire for evaluating stress-levels of informal family caregivers. Implications for rehabilitation Measures of caregivers' psychological status are of clinical value. The Caregiver Self-Assessment Questionnaire functions as a screening measure for symptoms of depression and anxiety. The Turkish version of the Caregiver Self-Assessment Questionnaire is a valid and reliable questionnaire for evaluating stress-levels of informal family caregivers.
Background: Primary caregivers of people with disability provide extensive physically and emotionally demanding care. Objectives: The aim of this study was to quantify the burden of high psychological distress in primary carers of people with disability and identify modifiable factors in relation to high psychological distress. Methods: The 2015 national 'Survey of Disability, Ageing and Carers in Australia' was used to derive a nationally representative sample and estimate weighted prevalence rates of high psychological distress (Kessler scores >=22) in primary carers of people with disability. Risk factors were evaluated using weighted logistic regression models with lasso techniques. Results: Approximately 27% of carers had high psychological distress. Nearly half of the study population reported changes in their health and wellbeing. A delay in general practitioner (GP) visits was common and associated with >2-fold increase in risk of high psychological distress. Discussion: The findings suggest targets for early diagnosis and intervention, and adequate referrals from GPs to meet the health needs of carers.
Objective: Quality of life of people with dementia and their family carers is strongly influenced by interpersonal issues and personal resources. In this context, relationship quality (RQ) and sense of coherence (SOC) potentially protect and promote health. We aimed to identify what influences RQ in dyads of people with dementia and their carers and to examine differences in their perspectives. Methods: Cross-sectional data were used from the Actifcare cohort study of 451 community-dwelling people with dementia and their primary carers in eight European countries. Comprehensive assessments included the Positive Affect Index (RQ) and the Orientation to Life Questionnaire (SOC). Results: Regression analyses revealed that RQ as perceived by people with dementia was associated with carer education, stress, and spouse caregiving. RQ as perceived by carers was associated with carer stress, depression, being a spouse, social support, reported neuropsychiatric symptoms of dementia, and carer SOC. Neuropsychiatric symptoms and carer stress contributed to discrepancies in RQ ratings within the dyad. The only factor associated with both individual RQ ratings and discrepancies was carer stress (negative feelings subscore). No significant differences in the overall perception of RQ were evident between spouses and adult children carers, but RQ determinants differed between the two. Conclusions: In this European sample, carer SOC was associated with carer-reported RQ. RQ determinants differed according to the perspective considered (person with dementia or carer) and carer subgroup. A deeper understanding of RQ and its determinants will help to tailor interventions that address these distinct perspectives and potentially improve dementia outcomes.
Purpose We aimed to address gaps identified in the evidence base and instruments available to measure the quality of life (QOL) of family carers of people with dementia, and develop a new brief, reliable, condition-specific instrument. Methods We generated measurable domains and indicators of carer QOL from systematic literature reviews and qualitative interviews with 32 family carers and 9 support staff, and two focus groups with 6 carers and 5 staff. Statements with five tailored response options, presenting variation on the QOL continuum, were piloted (n = 25), pre-tested (n = 122) and field-tested (n = 300) in individual interviews with family carers from North London and Sussex. The best 30 questions formed the C-DEMQOL questionnaire, which was evaluated for usability, face and construct validity, reliability and convergent/discriminant validity using a range of validation measures. Results C-DEMQOL was received positively by the carers. Factor analysis confirmed that C-DEMQOL sum scores are reliable in measuring overall QOL (ω = 0.97) and its five subdomains: ‘meeting personal needs’ (ω = 0.95); ‘carer wellbeing’ (ω = 0.91); ‘carer-patient relationship’ (ω = 0.82); ‘confidence in the future’ (ω = 0.90) and ‘feeling supported’ (ω = 0.85). The overall QOL and domain scores show the expected pattern of convergent and discriminant relationships with established measures of carer mental health, activities and dementia severity and symptoms. Conclusions The robust psychometric properties support the use of C-DEMQOL in evaluation of overall and domain-specific carer QOL; replications in independent samples and studies of responsiveness would be of value.
Aims and objectives This study set out to describe caregiver experience, health‐related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis and to explore factors associated with caregivers’ health‐related quality of life and life satisfaction. Background Knowledge about factors related to caregivers’ health‐related quality of life and life satisfaction is important for identification of those at risk for ill health and for development of support and care. Design A cross‐sectional study.MethodsForty‐nine informal caregivers and 49 patients were included. Standardised and study‐specific questionnaires were used for data collection on caregiver experience (Caregiver Reaction Assessment), health‐related quality of life (EuroQol Visual Analogue Scale, SF‐36), life satisfaction (Life Satisfaction Checklist) and caregiver‐ and patient‐related factors. Associations were explored by regression analyses. Results Both positive and negative caregiver experience were reported, and health‐related quality of life and life satisfaction were below national reference values. Positive experience was associated with better and negative with worse mental health‐related quality of life. Factors related to informal caregivers (sex, age, living conditions) and patients (anxiety and/or depression) were related to caregivers’ health‐related quality and life satisfaction. Conclusion The results indicate the need to consider the individual caregiver's experience when planning services, care and support. It is important to adopt person‐centred care, not only for patients but also for their informal caregivers, as factors related to both parties were associated with the informal caregivers’ health‐related quality of life and life satisfaction. Relevance to clinical practice Our study suggests that promoting positive experience and providing services and support to reduce negative aspects of caregiving might be important strategies for healthcare personnel to improve informal caregivers’ health.
Background: The 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.; Methods: One 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.; Results: Mean 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).; Conclusion: Caregiver 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.
This study aimed to clarify the relationship between social cohesion and family care burden. The social capital indicators of Kondo et al. and the short version of the Zarit Care Burden Interview Scale in Japanese (J-ZBI_8) were used. Data were analyzed by multiple regression models. Seventy-one caregivers responded. Factors showing statistical significance in the multiple regression analysis included "receipt of emotional support" (p = 0.009) and "instrumental support provided" (p = 0.010). Social support was suggested to have a possible effect on the care burden of the main caregivers to relate to less burden. The gap between the original ideal loss and the social role caused by providing nursing care is likely to increase the degree of care burden.
Objective: Although various short forms of Zarit Burden Interview (ZBI) have been developed, there is a lack of standard psychometric testing and comparison among them. The study aims to examine the psychometric properties of ten short versions of the most frequently used ZBI among a sample of schizophrenia caregivers and to find the one with the best performance. Methods: Cross-sectional door-to-door survey of ZBI-22 and a series of validated instrument data from 327 family caregivers of schizophrenia patients in a Chinese rural community were conducted from October 2015 to January 2016. Reliability was assessed using McDonald's omega coefficient (ω). Validity including concurrent validity, known group's validity, and criterion validity were assessed by Spearman correlations and Mann-Whitney U tests. Overall discrimination ability was evaluated using the area under the receiver operating characteristic curve (AUC). Results: Reliability was generally good for all short forms (ω = 0.69-0.84), except for the Gort ZBI-4 (ω = 0.58), which is acceptable considering its small item numbers. Concurrent validity was good across all various ZBI forms with significant negative correlations with patient's function (r = -0.34 to -0.48, p < 0.01), as well as significant positive correlations with caregiver's depression (r = 0.49-0.65, p < 0.01), and anxiety symptoms (r = 0.45-0.58, p < 0.01). Known groups' validity (carers with disease vs. without disease; carers being parents vs. spouse vs. others) showed inconsistent results among various short forms. Criterion validity was generally good for all short forms with significant positive correlations with Family Burden Interview Schedule (r = 0.67-0.75, p < 0.01), except for the Higginson ZBI-1(r = 0.57, p < 0.01). Discriminative ability was also good for all short forms (AUC range: 0.85-0.99), with various cutpoints proposed. Among all ten short forms, the Ballesteros ZBI-12 and the Gort ZBI-7 outperformed others with almost equally good performance in comprehensive psychometric testing. Conclusions: This study provides support for the reliability, validity, and discriminative ability of the ten various short forms of ZBI for use among schizophrenia family caregivers, with the Ballesteros ZBI-12 and the Gort ZBI-7 endorsed as the best ones.
Background: This study assessed the health related quality of life of family caregivers (FCs) of leukemia patients by using the health utility scores derived from the EuroQol five-dimensional (EQ-5D) questionnaire. Methods: A cross-sectional survey was undertaken on 306 family caregivers of leukemia patients to assess their health utility using the EQ-5D-3L. Participants were recruited from three hospitals in China's Heilongjiang province. The health utility scores of the participants were estimated based on the Chinese EQ-5D-3L value set and compared with those of the local general population. Factors predicting the health utility scores were identified through the Kruskal-Wallis analysis of variance and median regression analyses. Results: FCs had lower health utility scores than the general population (p < 0.001). The participants with a lower socioeconomic status had lower utility scores and reported more problems than those with a higher socio-economic status. Better family function and higher social support were associated with higher health utility scores. The type of leukemia, household income, and social support are significant predictors of health utility scores of the FCs. Chronic lymphocytic leukemia, low socio-economic status, and low social support are associated with lower health utility scores of the FCs. Conclusions: FCs for leukemia patients have lower health utility scores than the local general population, as measured by the EQ-5D-3L. There is an immediate need to address the health concerns of FCs, who play an important role in the Chinese health care system.
Background: Potentially harmful behaviour (PHB) by caregivers is detrimental to the physical and psychological well‐being of care recipients. In Japan, few studies have investigated caregivers’ PHB towards dementia patients. This study examined PHB in family caregivers of dementia patients with behavioural and psychological symptoms of dementia (BPSD) and identified factors related to PHB. Methods: Following primary consultations at an elderly psychiatric patient department, we enrolled 133 pairs of dementia patients and their family caregivers. We assessed PHB using the Japanese version of the modified Conflict Tactics Scale. We defined the presence of PHB as two or more points (PHB frequency of ‘sometimes’ or more) on at least one indicator of the modified Conflict Tactics Scale. We investigated the prevalence of PHB in relation to the clinical characteristics of the patients and their family caregivers. We evaluated BPSD using the Neuropsychiatric Inventory and caregiver burden using the eight‐item Japanese version of the Zarit Caregiver Burden Interview. Results: Of the family caregivers, 48.9% showed PHB. Multivariate analysis identified the following association with PHB: caregiver's Zarit Caregiver Burden Interview total score (odds ratio [OR], 1.09 per unit increase; 95% confidence interval [95%CI], 1.02–1.16), and Neuropsychiatric Inventory scores for patient irritability (OR, 1.22 per unit increase; 95%CI, 1.06–1.40), appetite/eating disorders (OR, 1.41 per unit increase; 95%CI = 1.08–1.84) and daughters‐in‐law caregivers (OR, 0.17, 95%CI, 0.05–0.57). Conclusions: Specific BPSD symptoms could contribute to the expression of PHB. In addition to decreasing caregiver burden, more intensive treatment and care strategies are required to manage individual symptoms.
Objective: To assess the association between perceived stigma and discrimination and caregiver strain, caregiver well-being, and patient community reintegration.; Design: A cross-sectional survey study of 564 informal caregivers of U.S. military service veterans of wars in Iraq and Afghanistan who experienced traumatic brain injuries or polytrauma (TBI/PT).; Setting: Care settings of community-dwelling former inpatients of U.S. Department of Veterans Affairs Polytrauma Rehabilitation Centers.; Participants: Caregivers of former inpatients (N=564), identified through next-of-kin records and subsequent nominations.; Interventions: Not applicable.; Main Outcome Measures: Caregiver strain, depression, anxiety, loneliness, and self-esteem; as well as care recipient community reintegration, a key aspect of TBI/PT rehabilitation.; Results: Family stigma was associated with strain, depression, anxiety, loneliness, lower self-esteem, and less community reintegration. Caregiver stigma-by-association was associated with strain, depression, anxiety, loneliness, and lower self-esteem. Care recipient stigma was associated with caregiver strain, depression, anxiety, loneliness, lower self-esteem, and less community reintegration.; Conclusions: Perceived stigma may be a substantial source of stress for caregivers of U.S. military veterans with TBI/PT, and may contribute to poor outcomes for the health of caregivers and for the community reintegration of the veterans for whom they provide care.
Introduction It is important to understand the experiences of elderly people with dementia and their family caregivers. Moreover, the maintenance of family caregivers’ satisfaction with co-occupation is important to ensure that they intend to continue providing care. This study developed and validated the Measure of Supporting Co-occupation, which assesses co-occupation involving elderly people with dementia and their family caregivers. Method This study used a cross-sectional design and questionnaire survey. Participants were recruited from 21 institutions. Descriptive statistics were calculated for the following domains: ‘evocation of the story of co-occupation’, ‘intention to continue co-occupation’ and ‘preferred co-occupation’. The construct validity and reliability of the ‘intention to continue co-occupation’ domain were examined using exploratory factor analysis, confirmatory factor analysis and Cronbach’s alpha. The criterion-related validity of the ‘intention to continue co-occupation’ was examined by means of correlations with other scales. Results There were 115 pairs of participants. Good criterion-related validity and internal consistency were confirmed for the ‘intention to continue co-occupation’ domain. However, confirmatory factor analysis showed insufficient model fitness. Conclusion The ‘intention to continue co-occupation’ domain is not ready for clinical application due to insufficient model fitness, it is necessary to revise the Measure of Supporting Co-occupation.
Background: Caregivers are often unprepared and overwhelmed with the responsibilities of providing care to stroke survivors, which can lead to negative physical and psychological effects.; Purpose: To evaluate the impact of the Family Informal Caregiver Stroke Self-Management (FICSS) program on burden and life changes resulting from providing care among family caregivers of stroke survivors.; Methods: A prospective pre-test and post-test design using quantitative and qualitative data was used to evaluate the program with a convenience sample of 42 caregivers. The four-module facilitated program consisted of small group-guided discussion. Quantitative evaluations were completed at baseline, 2 weeks and 6 months (post-intervention), and qualitative data were collected at 2 weeks and 6 months. Life changes and burden were measured using the Bakas Caregiving Outcome Scale (BCOS) and the Oberst Caregiving Burden Scale (OCBS), respectively.; Results: The BCOS scores increased consistently over time, showing significant differences at 6 months compared with 2 weeks (mean difference: 5.29, 95% confidence interval [CI]: 0.30-10.28, p=0.04) and baseline (mean difference: 7.58, 95% CI: 2.92-12.23, p=0.001). The OCBS time scores decreased consistently over time, showing a significant difference at 6 months compared with baseline (mean difference: -5.20, 95% CI: -0.96 to -9.44, p=0.02). The OCBS difficulty scores fluctuated over time, resulting in no overall difference from baseline to 6 months. Qualitative themes were consistent with the positive quantitative findings.; Conclusion: Study results suggest that the FICSS program may result in reduced caregiver burden and improved life changes resulting from providing care.
Objectives: To compare the effectiveness of 2 caregiver interventions with known efficacy: the Resources for Enhancing Caregiver Health‐Offering Useful Treatment (REACH‐OUT) and the New York University Caregiver Intervention (NYUCI). Design: 1:1 randomized pragmatic trial. Setting: New York City. Participants: Informal Hispanic caregivers of persons with dementia (N=221; mean age 58.2, 82.8% female, 63.3% adult children, 31.7% spouses). Intervention: Participants were randomized to 6 months of NYUCI (n=110) or REACH‐OUT (n=111), balanced on characteristics at baseline. All participants were referred for social supportive services. Measurements: The primary outcomes were changes between baseline and 6 months in depressive symptoms, measured using the Geriatric Depression Scale (GDS), and caregiver burden, measured using the Zarit Caregiver Burden Scale (ZCBS). Results: There were no differences in outcomes between NYUCI and REACH‐OUT. Both interventions showed a reduction in burden (REACH‐OUT: 5.2 points, 95% confidence interval (CI)=2.2–8.1, p<.001; NYUCI: 4.6‐points, 95% CI=1.7–7.5, p=.002). There were no significant changes on the GDS. Effects for the ZCBS were significant only for spouses and older caregivers. Conclusion: Although there were no significant intervention group differences, both interventions resulted in significantly reduced burden for Hispanic caregivers at 6 months, particularly for spouses and older caregivers.
Background Caregivers of breast cancer survivors experience various types of burden, which in turn is linked to patients' physical and psychological status. Family resilience might be able to decrease caregiver burden and facilitate survivors' individual resilience, and individual resilience might be related to caregiver burden. Nevertheless, these relationships have not yet been confirmed. Objective To determine the relationships between family resilience, breast cancer survivors' resilience, and principal caregivers' caregiver burden, as well as determine whether breast cancer survivors' individual resilience plays a mediating role in the relationship between family resilience and caregiver burden. Design Cross-sectional study design. Setting The comprehensive cancer center of a public hospital in Shandong Province, China. Participants The sample comprised 108 dyads of early-stage breast cancer survivors and their principal caregivers. Methods The principal caregivers completed the Shortened Chinese Version of the Family Resilience Assessment Scale and the Chinese Version of the Zarit Caregiver Burden Interview, while the breast cancer survivors completed the 10-item Chinese version of the Connor-Davidson Resilience Scale and provided their sociodemographic information. The mediating effect of individual resilience was estimated using the bootstrap method via IBM SPSS Amos 21.0. Results Caregiver burden was significantly negatively associated with both family resilience and breast cancer survivors' individual resilience (both p <.01). Furthermore, individual resilience mediated the relationship between family resilience and caregiver burden (b = −0.052; 95% confidence interval: −.412, −.036). Conclusions The findings suggest that both family resilience and breast cancer survivors' individual resilience may ease caregiver burden among the principal caregivers of breast cancer survivors, and family resilience tends to promote the survivors' individual resilience. Therefore, family resilience and survivors' individual resilience should be enhanced for breast cancer survivors and their family to ease the principal caregivers' caregiver burden.
Background: Cancer and its treatment can result in psychological distress in both adults with cancer and in their family caregivers. This psychological distress acts as a significant adverse factor in patient-caregiver dyads. The study purposes included: (i) to assess anxiety and depression in adults with cancer and their family caregivers, and examine the dyadic relationship of anxiety and depression in patient-caregiver dyads; (ii) to investigate factors that may modify these relationships; and (iii) to explore the impact of anxiety and depression on patient-caregiver dyad quality of life (QOL).; Methods: This was a secondary analysis of a cross-sectional study. Participants consisted of 641 patient-caregiver dyads. Participants completed a survey assessing adults with cancer-related, family caregiver-related, and family-related variables using a demographic/clinical information sheet. In addition, anxiety/depression and QOL were assessed by using the Chinese version of the Hospital Anxiety and Depression Scale and SF-12 respectively. Data were analyzed by using descriptive statistics, Pearson correlations, subgroup analysis, and the Actor-Partner Interdependence Model.; Results: Nearly one-third of participants had experienced anxiety and depression. Adults with cancer and family caregivers experienced a similar degree of anxiety and depression. Correlations (r) of anxiety and depression between patient-caregiver dyads ranged from 0.25 to 0.32. Various factors influencing the anxiety and depression relationship between patient-caregiver dyads were identified, including adults with cancer-related (e.g., age, gender, marital status, level of being informed about the disease, different types of cancer and treatment), family caregiver-related (e.g., being the spouse of a patient, duration in their role as a family caregiver, and amount of time spent on caregiving each day), and family-related (family relationship pre- and post-cancer, financial burden on the family due to cancer treatment) variables. To some extent, both actor and partner effects were identified for anxiety and depression on the QOL of patient-caregiver dyads.; Conclusions: Study findings call attention to anxiety and depression, as well as related factors, in patient-caregiver dyads. The underlined essential components and focus of intervention, which will be developed to decrease psychological distress and improve QOL in patient-caregiver dyads, included individual characteristics of patient-caregiver dyads, family relationship, and anxiety and depression in their counterparts.;
Caring for a patient with Alzheimer disease (AD) represents a real challenge that can have considerable long-term psychological and physical consequences. The aim of this study was to evaluate the impact of the perception of being recognized on both the psychophysical health and the level of burden reported in caregivers of patients with AD. The secondary aim was to evaluate the association between the use of a home care assistance service and the burden and psychophysical health in caregivers. The Caregiver Burden Inventory (CBI), the 36-item Short-Form Health Survey (SF-36), and a visual analog scale (VAS) to evaluate the level of perception of being recognized were administered to 31 caregivers of patients with AD. Data were also collected from patients with AD using the Mini-Mental State Examination (MMSE). The level of perception of being recognized was significantly and negatively correlated with total burden ( r = -0.36; P = .045) and objective burden ( r = -0.53; P = .002). It was also significantly and positively correlated with the MMSE score ( r = 41; P = .02). Regression models showed that only the perception of being recognized, and not MMSE, significantly predicted lower caregiver objective burden scores. Furthermore, the use of a home care assistance service significantly predicted higher caregiver physical functioning. The perception of being recognized by an AD relative significantly predicted the caregiver's objective burden associated with a shortage of time. The use of a home care assistance service also resulted in a promotion in the caregiver's social functioning. Further studies are needed to confirm these results.
Objectives: This study evaluated the change in the concerns, wellbeing, and lifestyle behaviors of informal caregivers of people with cancer attending Penny Brohn UK's Living Well Course (LWC), a self-management education intervention. Design: A pre–postcourse design collected self-reported quantitative and qualitative data from informal caregivers attending a LWC. Setting/Location: Penny Brohn UK is a United Kingdom-based charity (not-for-profit) providing specialist integrative, whole person support, free of charge, to people affected by cancer. Subjects: Informal caregivers taking part in a Penny Brohn UK LWC between June 2014 and May 2016 attending alongside the person with cancer. Intervention: The LWC is a structured 15 h, multimodal group self-management educational course, designed to help people affected by cancer learn tools and techniques to help build resilience. Trained facilitators deliver LWCs to around 12 people with various types and stages of cancer and their informal caregivers. Outcome measures: Measure Yourself Concern and Wellbeing (MYCaW) completed precourse and at 6 weeks postcourse; and bespoke 6-week follow-up Patient Reported Experience Measure. Results: Four hundred eighty informal caregivers attended a LWC June 2014 to May 2016. One hundred eighteen completed a 6-week follow-up MYCaW: MYCaW Concerns 1 and 2 showed statistically significant improvements (p < 0.0001), there was no significant improvement in wellbeing. Informal caregivers' most reported concerns relating to themselves were psychological and emotional issues (59%). The primary concern of the caregiver for the care recipient was related to the physical health of the person with cancer (40%). Eighty-seven percent of responding informal caregivers stated that the LWC enabled health self-management. Conclusions: The LWC was followed by an improvement in informal caregivers' concerns, and increased self-management of their own health needs. More studies, with larger sample size, are needed to explore if better self-management by informal caregivers may also lead to improvements in patients' health and wellbeing.
Background and Objective: Psycho-education is an intervention integrating psychotherapeutic and educational strategies. Whilst carer psycho-education is known to aid in psychiatric disorders, at present there is no known tool to assess the degree to which this is routinely provided by mental health professionals. Our objective was to develop and validate a tool, in English, which assesses psycho-education of carers of psychiatric patients in Pakistan. Methods: A questionnaire was generated in English. It was pretested on twenty male and female carers and was refined to attain a more reliable version. Sixty bilingual male and female primary carers, who were fluent in English, and had been in a care-giving role for more than three months were requested to complete the developed Questionnaire for the Assessment of Psycho-Education of Carers (APEC) at Fatima Memorial Hospital Psychiatry Out-patient department within a period of four months from December, 2017 to April, 2018. Carers were identified via patients presenting to a psychiatric OPD. Responses were analyzed for reliability and test retest consistency using Cronbach's alpha analysis, Intraclass correlation coefficients, factor analysis and Paired t-test. Results: APEC was found to be easily understandable and capable of adequately assessing aspects of psycho-education. A high degree of internal consistency was demonstrated on cronbach's alpha analysis. Cronbach's α coefficient for various domains was sufficiently high ranging from 0.76 to 0.960. Similarly, domains of (APEC) were highly correlated. Test-retest reliability was assessed by computing the correlation between Visits 1 and 2 scores. Conclusion: The developed questionnaire can adequately assess psycho-education of primary carers in mental health settings.
Purpose: This study tried to identify changes in family burden after the introduction of the long-term care insurance and to examine the factors influencing subjective and objective caring burden and depression of family caregivers of elders receiving home-based long-term care. Methods: Data were collected from 203 family caregivers of elders from August 1 to 31, 2015 using questionnaires. They were analyzed in descriptive statistics, t test, ANOVA test, and multiple regression analysis. Results: The mean score of depression was 7.24, which suggested mild depression level. The subjective family burden was 2.71 and the objective burden 3.04. The factors affecting depression included subjective burden (t=5.08, p<.001), objective burden (t=2.80, p=.006), time of elderly care per day (t=-3.61, p< .001), caregiving duration (t=3.33, p=.001), age (t=3.13, p=.002), family relationship (t=2.48, p=.014), and economic status (t=1.99, p=.047). Conclusion: The family burden was most important influencing factor on caregiver's depression. Therefore, services and supports to alleviate caregivers' burden in the home-based care should be added to long-term care.
Background: Different kinds of chronic diseases might imply different dimensions of caregiver burden, not previously described among the caregivers to recipients from the general elder population. Aim: The main objective was to examine differences in burden between the 343 caregivers to persons with different diagnoses. Methods: A group of elderly recipients of informal care (n = 343) from the general population study ‘Good Aging in Skåne’ (GÅS) Sweden, were divided into five diagnostic groups: dementia (n = 90), heart and lung diseases (n = 48), stroke (n = 62), fractures (n = 66), depression (n = 40) and the group “other”, consisting of different diagnoses (n = 37) according to ICD-10. Differences in burden were analyzed using the Caregiver Burden Scale (CBS), a 22-item scale consisting of five dimensions: general strain, isolation, disappointment, emotional involvement and environmental burden. A total burden index comprises the mean of all the 22 items and a higher score indicates a higher burden. Results: The most common diagnosis associated to caregiving was dementia and fracture and the median hours weekly for informal support with instrumental ADL for the five diagnostic groups ranged from 7 to 45 h for spouses and from 4 to 7 h for parents. The highest proportion of caregivers scoring high total burden was seen among recipients with dementia (50%) and depression (38%); the OR for high total burden for the dementia group was 4.26 (2.29-7.92) and depression group 2.38 (1.08-5.24) adjusted for covariates like age, gender and ADL and these two groups had higher self-perception of burden in all the dimensions, especially the dimension’s emotional burden and strain. Conclusion: Informal support constitutes a substantial time for instrumental ADL for the diseased elders. Caregivers to persons with dementia and depression experience high burden.
Objectives: To compare depression and psychological well-being between caregivers of schizophrenic patients and non-caregivers and to study the burden of caregiving as a relative risk for depression and psychological well-being.; Methods: This cross sectional comparative study was conducted at International Islamic university Islamabad from January to September 2017. Fifty informal caregivers of schizophrenic patients from 19 to 55 years of age were included in the study. The control group consisted of age and socio-economic status matched healthy volunteers who did not have any psychological or medical patient at home needing care and assistance. For measurement of study variables i.e., burden of caregiving, depression and psychological well-being, instruments used were Zarit Burden Interview (ZBI), The Beck Depression Inventory (BDI) and Warwick-Edinburgh Mental Well-Being Scale (WEMWBS) respectively.; Results: Results were analyzed using MANOVA followed by One-Way ANOVA. Findings indicated that informal caregivers of schizophrenia have greater depression and poor psychological well-being in comparison to the non-caregiver controls. Association of caregiving burden with psychological well-being and depression was calculated using Chi Square test and relative risk.; Conclusion: Caregiving adversely affects informal caregivers' mental health and wellbeing. Informal caregiving is a burden for the caregivers; health status of family members involved in caregiving should be routinely assessed to enhance their health-related quality of life.
Objective: To evaluate the satisfaction of family caregivers with a mental health inpatient service in Brazil.; Methods: This was a cross-sectional study with a quantitative approach. A sample of 80 caretaking family members answered the abbreviated version of the Brazilian Mental Health Services' Family Satisfaction scale (SATIS-BR) and a sociodemographic questionnaire. Categorical variables were expressed as frequencies and percentages and quantitative variables as means and standard deviations. Interactions among variables and indexes of the scale were analyzed using the Student's t test, Pearson correlation coefficient and analysis of variance.; Results: The results showed a high mean overall satisfaction score when considering the categorization of the items of the scale, with higher satisfaction indexes in the 'Treatment results' subscale and lower ones in the 'Reception and competence of staff' and 'Privacy and confidentiality' subscales. In the comparison of the samples studied, greater scores were observed in general satisfaction and in factors in the medical residency care model than in the attending psychiatrist model. There were no significant differences in terms of family member satisfaction in relation to sociodemographic variables.; Conclusion: Family member satisfaction was high. The need for improvement in aspects related to the infrastructure of services was evident. This paper underlines the importance of continuous and regular evaluations of the services provided, focusing on the satisfaction of users and family members in order to better understand the factors that contribute towards the quality of care provided.
Background Higher patient-caregiver mutuality is associated with improved patient and caregiver outcomes, but no studies have tested the psychometric characteristics of the mutuality scale (MS) in heart failure (HF) patient and caregiver population. Objectives To test the validity and reliability of the MS. Methods A cross-sectional design. The MS validity and reliability were tested with confirmatory factor analysis (CFA) and hypothesis testing, and with Cronbach's alpha and model-based internal consistency index, respectively. Results CFA supported the validity of the MS in the HF patient and caregiver versions. Hypothesis testing showed significant correlations between both versions of the MS and anxiety, depression, quality of life, and self-care. Also, MS caregiver version scores correlated significantly with caregiver preparedness. Cronbach's alphas and the model-based internal consistency index ranged between 0.72 and 0.94 in both versions. Conclusions The Mutuality Scale showed supportive validity and reliability for HF patients and caregivers.
Objectives: The stress-related psychological symptoms experienced by informal family caregivers do not always improve or resolve after the death of the care recipient. The purpose of this study was to explore the independent associations of sociodemographic variables, personality and coping, environmental variables, and caregiver guilt with the sleep quality and psychological distress of former family caregivers of individuals with dementia following care recipient's death.; Method: A cross-sectional, correlational study was conducted with a sample of 171 former family caregivers of people with dementia. Participants completed an online survey comprised of six instruments and demographic items. Caregiver personal variables (e.g. personality and coping), environmental variables, guilt, psychological distress (depressive and anxiety symptoms), and sleep quality were evaluated using psychometrically validated measures.; Results: In bivariate analysis, post-caregiving guilt was significantly associated with depressive and anxiety symptoms (p < 0.01). After controlling for covariates, dysfunctional coping and neuroticism explained 32% of the variance in depressive symptoms (R2 = .52, ΔR2 = .32, F(5, 165) = 36.24, p < .001) and 24% of the variance in anxiety symptoms (R2 = .41, ΔR2 = .24, F(5, 165) = 22.65, p < .001), while dysfunctional coping, pre-loss depression, and extraversion accounted for 16% of the variance in sleep quality (R2 = .30, ΔR2 = .16, F(6, 164) = 11.44, p < .001).; Conclusion: This study demonstrates the critical role of personal variables, including personality traits, coping strategies, and pre-loss depression, in explaining psychological distress and sleep quality in this sample of former dementia caregivers.
Introduction: Family and friends of seriously ill patients are key partners in providing support and health care at home, managing relationships with clinicians, and navigating complex health care systems. Becoming a knowledgeable, confident, and effective caregiver is a developmental process we term 'caregiver activation' and could be facilitated by clinicians equipped with suitable tools. Managing Your Loved One’s Health (MYLOH) is a new tool to identify gaps in caregivers' knowledge, skills, and access to clinical and personal support. Created in partnership with caregivers and clinicians, MYLOH items reflect the essential dimensions of caregiving and can be used to tailor caregiver coaching to domains of greatest need. In this study, we extend MYLOH's initial focus on dementia care to caregivers of patients with other chronic life-limiting illnesses. Methods: MYLOH was completed by primary caregivers (n = 190) of people with a range of advanced chronic illnesses enrolled in the LifeCourse study, an innovative, whole-person approach to health management. Item relevance and responses were compared by group across MYLOH items and domains using z-tests for equality of proportions. Results: All MYLOH items were relevant to caregiving for all types of chronic illness; only 13% of caregivers answered “not my responsibility” to any question. MYLOH identified caregiving struggles across patient diagnosis groups with a few, disease-specific ‘hotspots’. Overall, 64% of caregivers scored low in activation on at least one healthcare management task, especially getting enough help with caregiving, managing everyday caregiving tasks, understanding/managing medications, and knowing how to respond to rapid changes in care recipients' health status. No difficulty was unique to a specific type of care recipient illness. Conclusions: MYLOH has potential as a tool for identifying caregiver coaching and support needs in managing a range of serious chronic illnesses. Caregiving difficulties endorsed by over 20% of caregivers should be core components of chronic illness management programs regardless of disease focus, with disease-specific tailoring as required. MYLOH may be useful in evaluating caregiver interventions and health systems’ performance in integrating caregivers into the care management of patients with complex life-limiting illness.
Despite the abundance of randomized clinical trial interventions for family caregivers (FCs) who look after persons with dementia, the extent to which these findings can be effectively implemented in a real‐world clinical setting is questionable.1 Indeed, a prompt and practical support programme for real clinical settings would benefit FCs, especially given the long hours that they spend caregiving,2 but few studies have investigated easily implemented support programmes for FCs.
Therefore, the objectives of this study were two‐fold: (i) to explore the possibility of nurses providing prompt and practical support to ‘high‐risk’ FCs who require some assistance on days when they visit a memory clinic; and (ii) to investigate whether such prompt albeit brief support would reduce the extent of subjective burden among FCs.
Although research shows that most parents and adult children report generally positive and supportive ties, there is also evidence that negative interactions and emotions are common in intergenerational relationships. To investigate this complexity, researchers have moved beyond simple models to orientations and approaches that recognise contradictory emotions and attitudes regarding family relationships in later life. These efforts have given rise to what has come to be termed the 'intergenerational ambivalence' perspective. In this article, we explore the applicability of this perspective to the issue of family caring. We begin by reviewing recent developments in the intergenerational ambivalence perspective. We then discuss a paradox: although caring appears to be a situation particularly prone to conflicting emotions, little research has focused specifically on ambivalence among carers. We present results from our work that shed light on the measurement of carer ambivalence, as well as substantive findings regarding sources of ambivalence for carers.
Background: Today, most cancer treatment is given in outpatient treatment centers. In this process, family members who are responsible for the primary care of the patient have difficulty coping with the side effects of the disease and the treatment. This can change the reactions of family members to care giving, affecting the physical and psychological health of family members. Aim: This study has been carried to determine the relationship between caregiving burden and quality of life (QOL) of family caregivers of outpatients receiving chemotherapy. Method: This descriptive and cross-sectionalstudy was carried out 120 patients' family caregivers applying to the outpatient center of university to receive chemotherapy. The data were collected through "Personal Information Form", "Caregiver's Stress Index'', " Cancer Patients' Caregiver Family Members' Life Quality Scale (CQOLC) " and by the researchers. Result: It has been determined that the family caregivers being female, having a low level of education, having a job, having lower incomes than their expenses, giving care for their spouses and giving care 21 hours and over daily have the worst QOL. All the family caregivers giving care reported that they live psychological distress while looking after the patient. Due to chemotherapy, all the family members providing care stated to have difficulties while handling the side effects occurred in patients. It was found that 30.8% of the family members could not cope with nausea, 29.1% with fatigue, 24.2% with loss of appetite, and 19.2% with vomiting. Conclusion: By reducing the maintenance burden of family member caregivers, it can be considered that the QOL of both family members and patients may increase.
Background: The consequences and high costs of psychiatric disorders impact family caregivers greatly. Health services should identify and provide accessible support programs to facilitate effective caregiver coping.; Purpose: The aim of this study was to determine the effectiveness of a theory-of-planned-behavior-based problem-solving training program on the coping styles of family caregivers of psychiatric inpatients.; Methods: In this two-group, randomized control trial, 72 family caregivers were randomly assigned to either a control group receiving standard care or an intervention group receiving a training program (eight sessions over 4 weeks). Demographic information was recorded at baseline, and the Coping Inventory for Stressful Situations was administered to both groups at baseline, immediately postintervention, and 1-month follow-up.; Results: Immediately after the intervention, the intervention group earned significantly higher task-oriented coping style scores (mean difference = 5.03, p = .015) than the control group, but no significant difference was detected between the two groups for either emotion- or avoidance-oriented coping style scores. At 1-month follow-up, the intervention group earned significantly higher scores than the control group for task-oriented (mean difference = 8.56, p < .001) and emotion-oriented (mean difference = 7.14, p = .002) coping styles. No improvement in avoidance-oriented coping style at the postintervention or follow-up time points was detected.; Conclusions: Implementation by nurses and other health professionals of problem-solving training programs that are based on the theory of planned behavior is recommended to strengthen the use of task- and emotion-oriented approaches that help family caregivers of psychiatric patients better cope with stress.
Aim: The majority of caregivers for stroke patients in Malaysia are informal caregivers, although there are no valid tools to measure their knowledge regarding caregiving. Therefore, this study validated the Caregiving Knowledge Questionnaire (CKQ-My) as an assessment of Malaysian stroke caregivers' knowledge regarding patient positioning and feeding. Methods: Back-to-back translation was used to produce a bilingual version of the questionnaire. Hand drawings were used to replace photographs from the original questionnaire. Face validity and content validity were assessed, and construct validity was determined by comparing responses from informal caregivers, medical students, and primary care doctors. Finally, the internal consistencies of the subscales were determined. Results: Pretesting showed that the translated version was sufficiently easy to understand. Internal consistency for the positioning subscale (28 items, Cronbach's α = 0.70) and feeding subscale (15 items, Cronbach's α = 0.70) was good. Mean scores for the positioning subscale for caregivers (mean: 17.1 ± 3.9), medical students (mean: 18.9 ± 3.1), and doctors (mean 21.5 ± 2.2) were significantly different (F = 5.28, P ' = 0.011). Mean scores for the feeding subscale for caregivers (mean 13.1 ± 2.5), medical students (mean 16.1 ± 1.9), and doctors (mean 16.1 ± 2.4) also differed significantly (F = 6.217, P = 0.006). Conclusions: CKQ-My has good internal consistency and construct validity for the subscales measuring stroke caregivers' knowledge about positioning and feeding of stroke patients. It has potential as an assessment of effectiveness of caregiver training and for future studies on long-term stroke outcomes in Malaysia.
Background Family carers of people living and dying with dementia experience grief. The prevalence, predictors and associated factors of grief in this population have been identified, and psychosocial interventions to decrease grief symptoms have been implemented. However, the effect of psychosocial interventions on family carers’ grief, loss or bereavement has not been examined. Objective To synthesize the existing evidence regarding the impact of psychosocial interventions to assist adjustment to grief, pre- and post-bereavement, for family carers of people with dementia. Inclusion criteria Types of participants Family carers of older persons with dementia (>65 years). Types of interventions Psychosocial interventions in health and social care facilities, and community settings designed to assist family carers adjust to grief during the dementia trajectory and/or following death. Comparisons No treatment, standard care or treatment as usual, or an alternative intervention. Types of studies Experimental and epidemiological study designs. Outcomes Grief in family carers including anticipatory, complicated and prolonged grief disorder measured with validated instruments. Search strategy A three-step strategy sought to identify both published and unpublished studies from 1995. Methodological quality Assessed by two independent reviewers using standardized critical appraisal tools from the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI). Data extraction The standardized data extraction tool from JBI-MAStARI was used by two reviewers independently. Data synthesis Statistical pooling of results was not possible due to the heterogeneity of the interventions and the outcome measures. Results Data were extracted from three studies. Study designs were a randomized controlled trial; a pre-test, multiple posttest quasi-experimental; and a single group, repeated measures. The interventions were multi-component, had durations of nine to 26 weeks and were delivered while care recipients were alive. All studies were undertaken in the United States. There were 327 family carers, of which 197 received a psychosocial intervention. Family carers were predominantly female (84.7%), Caucasian (73.4%) and caring for their spouse (44.3%). All care recipients had dementia; 68.5% had Alzheimer’s disease. Two studies measured anticipatory grief, and the third study reported normal and complicated grief. Moderate benefits to anticipatory grief were evident upon completion of the “Easing the Way” intervention (effect size -0.43, P = 0.03). After controlling for research design and control variables, for every hour increase in the interventions focusing on family carers’ cognitive skills, there were associated decreases in carers’ normal grief (parameter estimate [PE]= -0.81, P = 0.02) and complicated grief (PE=-0.87, P = 0.03). For every hour increase in the interventions focusing on carer behavior, there was an associated decrease in carers’ complicated grief (PE = -1.32, P = 0.04). For every hour increase in the interventions focusing on care recipient behavior, there was an associated decrease in carers’ complicated grief (PE = -2.91, P = 0.04). Conclusion There is little evidence upon which to base practice with regard to interventions to reduce any aspects of grief. Findings suggest that different pre-death interventions might be warranted depending upon a family carer’s unique clinical presentation and combination of risk factors. Cognitive skills training provided while the care recipient is alive may positively impact normal and complicated grief following the death of the care recipient. When the cognitive skills training is provided in conjunction with behaviorally oriented interventions that improve the wellbeing of the carer and care recipient, carers’ complicated grief symptoms may be reduced.
Background: Concerns about death may alienate and negatively impact communication among family members of patients with life-threatening illness. Little is known about the relationship of death anxiety to quality of life in cancer family caregivers. Objective: The aim of this study was to examine relationships between sociodemographic and patient-related factors, social support, and religiosity with death anxiety and quality of life in Iranian cancer family caregivers. Methods: Three hundred thirty family caregivers from an urban regional cancer institute in Iran participated in a descriptive-correlational study that incorporated sociodemographic surveys and validated death anxiety (Templer Scale) and Quality of life (Family Version) instruments. Results: Caregivers reported moderate levels of death anxiety and decrements in QOL. Quality of life was inversely associated with death anxiety (r = -0.30, P .001). Female caregivers who were daughters had higher death anxiety, whereas male caregivers who were sons reported higher quality of life. Conclusions: Death anxiety is associated with lowered quality of life in Iranian family caregivers. Multiple factors may impact death anxiety and quality of life relevant to the socioreligious milieu. Implications for Practice: Addressing concerns that increase death anxiety may improve quality of life and lower stress associated with adapting to the family caregiver role. Caregiving responsibilities, added to challenges associated with personal, family, and professional life, impact multiple aspects of QOL. As nurses increasingly care for patients from diverse backgrounds, it becomes more imperative that support for family caregivers that promotes psychological adaptation and quality of life is needed. References
Background There is a lack of good-quality instruments measuring stigma experienced by family members of stigmatised people. Aims To develop a self-report measure of stigma among families of people with intellectual and developmental disabilities and examine associations between family stigma and other variables. Method The new Family Stigma Instrument (FAMSI) was tested with 407 family carers, 53% of whose offspring had an autism spectrum disorder in addition to intellectual disability. They also completed measures of subjective well-being, caregiver burden, self-esteem and social support. Results The FAMSI yielded a five-factor structure and had good reliability. Perceived family stigma, caregiver burden and subjective well-being were the strongest predictors of family stigma. Conclusions This instrument can advance our understanding of the impact of stigma on family members. It can also help us understand sociodemographic, psychosocial and contextual variables of both the carer and cared for person that may influence family members' experiences.
Purpose of the Study: Ambivalence has been described as simultaneous positive and negative emotional experiences. Although ambivalent feelings are often reported by dementia family caregivers, the effect of these feelings on caregivers' mental health has not been studied. Furthermore, the measurement of ambivalence specific to caregiving situations has not been studied. The aims of this study are to analyze the psychometric properties of the Caregiving Ambivalence Scale (CAS) and, drawing upon the stress and coping model, to test whether ambivalent feelings significantly contribute to caregivers' distress. Design and Methods: Participants were 401 dementia family caregivers. Face-to-face interviews were conducted which included measures of ambivalence, depressive (CES-D) and anxious symptomatology (POMS), stressors (disruptive behaviors subscale of the RMBPC), and sociodemographic information. Results: Results from exploratory, parallel, and confirmatory factor analyses suggest that the CAS has a unidimensional structure, explaining a 64.26% of the variance of ambivalent feelings. Good reliability and validity indexes were found, including a Cronbach's alpha of .86. The results revealed significant (p < .01) positive associations with depressive and anxious symptomatology, and frequency and reaction to disruptive behaviors. Ambivalent feeling scores significantly contributed to the explanation of caregivers' depressive and anxious symptoms after controlling for sociodemographic and stressor variables. Implications: The CAS shows good psychometric properties that recommend its use as a measure of ambivalent feelings in caregivers and appears to be a relevant variable for understanding caregivers' mental health.
The purpose of this study was to investigate whether the well-being of caregivers is mediated by the association between behavioral and psychological symptoms in elderly relatives and the quality of sleep experienced by caregivers using a mediational model. The participants were 105 working family caregivers in Japan. We assessed well-being based on the Kessler Scale 10, self-rated health, and satisfaction in daily life. Our results showed that the well-being in working family caregivers was impacted by the severity of behavioral and psychological symptoms in elderly relatives. Well-being in working family caregivers was also affected by quality of sleep. Maintaining good quality of sleep in working family caregivers is important for reducing caregiver burden and psychological distress, and for improving the balance between work and family life.
PURPOSE To examine prediction power of personality traits, expressed emotion, and coping strategies on caregivers' burden. DESIGNS AND METHODS Cross-sectional descriptive correlational design was used to collect data from 196 caregivers using the Self-Administered Questionnaire from Jordanian caregivers of patients with serious mental illness. FINDINGS Jordanian caregivers had a moderate-to-severe burden level (M = 47.1, SD = 11.5). Burden had a significant negative relationship with coping (r = -.15, p = .04) and significant positive relationship with personality dysfunction (r = .16, p = .021). Emotional expression, coping, and personality were found to be significant predictors of burden (F = 5.16, p = .002). PRACTICE IMPLICATIONS Mental health professionals need to address family caregivers in their plans of care.
OBJECTIVE. The purpose of this study was to examine the effectiveness of the Family Caregiver Training Program (FCTP) for caregivers of people with dementia.METHOD. A random assignment control group research design with a 3-mo follow-up was implemented.RESULTS. Thirty-six family caregivers of people with dementia demonstrated an increase in activity of daily living (ADL) knowledge (p < .001) and maintenance of that knowledge 3 mo posttest. Caregiver confidence, regardless of group assignment, improved; however, it was not maintained. Burden, depression, and occupational performance and satisfaction remained unchanged for the intervention group; however, physical health as it pertained to quality of life improved 3 mo posttest (p < .001).CONCLUSION. Findings demonstrate that the FCTP can effectively provide knowledge to family caregivers on how to assist people with dementia with ADLs. Even when standard care was provided, there was limited information on ADLs that family caregivers faced daily.
INTRODUCTION: This study determined whether the multicomponent rehabilitation programme of a memory clinic had positive outcomes on ameliorating everyday functioning, quality of life, mood and behavioural disturbances of persons with dementia and reducing distress and burden of caregivers. METHOD: A retrospective pre-test-post-test study without control group was conducted on the first cohort of persons with dementia (n=30) and their caregivers (n=30), who participated in a programme lasting for a maximum of 1 year with 25 1-hour counselling sessions. The assessment contained an evaluation of everyday functioning in basic, instrumental and advanced activities of daily living, cognition, mood, emotional and behavioural disturbances, quality of life and caregiver burden. RESULTS: Eight participants dropped out prematurely. For persons with dementia (n=22), participating in the programme did not improve everyday functioning and cognition but ameliorated quality of life significantly (Z=-2.7, p=0.006, 95 per cent CI (.003-.005)) and stabilized mood, emotional and behavioural disturbances for 60 per cent or more of them. For caregivers (n=22), the mild to moderate burden of care remained stable or got better for 63.6 per cent of the caregivers. CONCLUSION: This programme appears to be promising and valuable, and might reduce institutionalization rates. Future explorations are recommended to research how participants evolve and to investigate which participants responded in a positive way.
With an ageing population, there are increasing numbers of experienced family carers (FCs) who could provide peer support to newer carers in a similar care situation. The aims of this paper are to: (i) use a cross-sectional study design to compare characteristics of volunteers and recipients of a peer support programme for FCs of people with dementia, in terms of demographic background, social networks and psychological well-being; and (ii) use a longitudinal study design to explore the overall impact of the programme on the volunteers in terms of psychological well-being. Data were collected from programmes run in Norfolk, Northamptonshire, Berkshire and four London boroughs between October 2009 and March 2013. The volunteer role entailed empathic listening and encouragement over a 10-month period. Both carer support volunteers (N = 87) and recipient FCs (N = 109) provided baseline demographic information. Data on social networks, personal growth, self-efficacy, service use and well-being (SF-12; EuroQol Visual Analogue Scale; Hospital Anxiety and Depression Scale; Control, Autonomy, Self-Realisation, Pleasure-19) were collected prior to the start of the intervention (N = 43) and at either 3- to 5 month or 10 month follow-up (N = 21). Volunteers were more likely than recipients of support to be female and to have cared for a parent/grandparent rather than spouse. Volunteers were also more psychologically well than support recipients in terms of personal growth, depression and perceived well-being. The longitudinal analysis identified small but significant declines in personal growth and autonomy and a positive correlation between the volunteers' duration of involvement and perceived well-being. These findings suggest that carers who volunteer for emotional support roles are resilient and are at little psychological risk from volunteering.
Objective Drawing on the Stress Process Model, this study examines cancer caregiving in Albania. We used conditional process analysis to test the relationship between psychological distress and quality of life through social support and to examine whether gender moderates pathways in this mediation model. Methods Face-to-face interviews were conducted with a non-probability sample of 377 caregivers from the public oncology service. Standardized measures were selected based on psychometric properties and cross-cultural adequacy; all had good internal consistency. Results Participants reported high levels of psychological distress, moderate social support, and poor quality of life. Compared with men, women had higher levels of distress, worse quality of life, and comparable levels of support. Men were more likely to be caring for a spouse and to rely on friends, while women also cared for others and relied more on family. Social support mediated a strong negative relationship between psychological distress and QoL. These pathways did not differ by gender. Conclusions Cancer is increasing rapidly in developing countries, where family caregiving is the preferred and often only option for long-term, intensive care. This study points to high risks for psychological distress and reduced quality of life, especially for female caregivers in Albania. Findings further highlight the importance of social supports an as avenue for prevention and intervention to improve quality of life for both men and women.
Objectives: The aim of this article was to identify the best predictors of distress suffered by family carers (FCs) of geriatric patients. Methods: A cross-sectional study of 100 FC-geriatric patient dyads was conducted. The negative impact of care (NIoC) subscale of the COPE index was dichotomized to identify lower stress (score of #15 on the scale) and higher stress (score of ≤16 on the scale) exerted on FCs by the process of providing care. The set of explanatory variables comprised a wide range of sociodemographic and care-related attributes, including patient-related results from comprehensive geriatric assessments and disease profiles. The best combination of explanatory variables that provided the highest predictive power for distress among FCs in the multiple logistic regression (LR) model was determined according to statistical information criteria. The statistical robustness of the observed relationships and the discriminative power of the model were verified with the cross-validation method. Results: The mean age of FCs was 57.2 (±10.6) years, whereas that of geriatric patients was 81.7 (±6.4) years. Despite the broad initial set of potential explanatory variables, only five predictors were jointly selected for the best statistical model. A higher level of distress was independently predicted by lower self-evaluation of health; worse self-appraisal of coping well as a caregiver; lower sense of general support; more hours of care per week; and the motor retardation of the cared-for person measured with the speed of the Timed Up and Go (TUG) test. Conclusion: Worse performance on the TUG test was only the patient-related predictor of distress among the variables examined as contributors to the higher NIoC. Enhancing the mobility of geriatric patients through suitably tailored kinesitherapeutic methods during their hospital stay may mitigate the burden endured by FCs.
Caregivers of persons with dementia (PWD) can experience loss and grief long before the death of the person. Although such experience of caregiver grief is measurable, available scales (such as the Marwit–Meuser Caregiver Grief Inventory, MM-CGI) are lengthy and have overlaps with other caregiving constructs. We developed a briefer scale that captures the essence of caregiver grief—with comparable psychometric properties and total score to MM-CGI, as well as less overlap with other caregiving constructs. Family caregivers of community-dwelling PWD (N = 394) completed questionnaires containing MM-CGI and other caregiving scales. Initially, we split the study samples into two —the derivation sample (n = 179) was used to develop a brief scale that best predicts MM-CGI (using the best-subset approach with tenfold cross-validation), whereas the validation sample (n = 215) verified its actual performance in predicting MM-CGI. Thereafter, we evaluated the derived scale in its reliability and validity, and mapped its scores to MM-CGI using the equipercentile equating method.We derived a 6-item scale, which explained 84.1% of the variability in MM-CGI and had area under the receiver operating characteristic curve of .96 in discriminating high caregiver grief (95% CI: .94–.99). It had single dimension in confirmatory factor analysis (comparative fit index = .98; Tucker–Lewis index = .97) and maintained good psychometric properties similar to those of MM-CGI, while showing lower correlation with caregiver burden and depression. It also had scores that could be mapped to MM-CGI with reasonable precision. We developed the first brief scale with less than 10 items that can conveniently and accurately measure caregiver grief, which opens the way for grief-related interventions in clinical care. Notably, this 6-item scale was developed using rigorous methods and demonstrated consistent evidence of capturing the essence of caregiver grief.
Background: Unpaid carers are the mainstay of support for people with dementia. Admiral Nursing (AN) is the only specialist nursing service that specifically focuses on supporting such carers, but evidence of its effectiveness, costs and relationships with other health and social care services is limited. This project aimed to address this gap and explore the feasibility of a full-scale formal evaluation. Objectives: To explore the relationships between characteristics of carers and people with dementia, service type and input and outcomes; to develop and test data collection methods for subsequent economic evaluation; to explore the effect of AN on outcomes and costs, compared with usual care; to explore the perceived system-wide impact of specialist support for carers of people with dementia, compared with usual care; and to implement new data collection methods in AN, which could also be used by other services, to facilitate evaluation. Design: A mixed-methods study, using secondary analysis of an administrative data set, and primary (cross-sectional) quantitative and qualitative data collection. Setting: Qualitative research with carers in four areas of England; a survey of carers in 32 local authority areas (16 with and 16 without AN); and qualitative interviews with professionals in four areas. Participants: Thirty-five carers of people with dementia and 20 professionals were interviewed qualitatively; 346 carers completed in-scope questionnaires (46% through AN services and 54% from matched non-AN areas). Interventions: Specialist nursing support for carers of people with dementia (with AN as an exemplar) compared with usual care. Main outcome measures: The Adult Social Care Outcomes Toolkit for Carers; the EuroQol-5 Dimensions, five-level version; and the Caregiver Self-Efficacy for Managing Dementia Scale. Data sources: Dementia UK’s AN administrative data set. Results: Admiral Nurses are successfully targeting the most complex cases. They work predominantly with older carers who have the main responsibility for the person with dementia, who are heavily involved in caring activity and who may be at risk. Three outcome areas that are important to carers of people with dementia and are potentially affected by receiving support are (1) carer self-efficacy, (2) carer quality of life (3) and carer mental and physical health. The carers in the survey receiving support from AN were older, were more heavily involved in caring and had poorer outcomes than carers not in receipt of such support. When these differences were controlled for, carers supported by AN had better outcomes, although the differences did not reach statistical significance. Health and social care costs were similar in both groups. The perceived system-wide impact of services, such as AN, is not well understood by professional stakeholders. Limitations: Challenges were experienced in identifying similar carers in areas with or without an AN service and in the cross-sectional nature of the work. Conclusions: Specialist nursing support to carers of people with dementia may enable them to continue providing care to the end or very close to the end of the dementia journey. The outcomes for such carers may be no different from, or even slightly better than, those of similar carers without this support, although the costs to health and social care services are the same in each case. Future work: Future research could investigate the impact of specialist support for carers on admission to long-term care. There is also a need for more work to encourage routine use of the selected outcome measures in dementia service delivery. Funding: The National Institute for Health Research Health Services and Delivery Research programme.
Context: The US Congress in 2010 established the Program of Comprehensive Assistance for Family Caregivers (PCAFC) in the Department of Veterans Affairs’ (VA) healthcare system, expanding services for family caregivers of eligible veterans with injuries sustained or aggravated in the line of duty on or after 11 September 2001. The program includes a Caregiver Support Coordinator, stipends for caregivers, education/training, and additional services. Objective: The primary goal of this study was to examine the types of services that family caregivers of veterans use and value, how services are used and any limitations family caregivers’ experienced. Given that few interventions assess caregiver satisfaction with services, there is a gap in the existing literature addressing these outcomes. Methods: We assessed how caregivers use and value services with a national, web-based survey (N=1,407 caregivers) and semi-structured phone interviews (N=50 caregivers). Findings: Caregivers rated all services as helpful and especially valued financial support to be with the veteran, training in skills for symptom management, and assistance with navigating the healthcare system. A majority reported more confidence in caregiving, knowing about resources for caregiving and feeling better prepared to support the veteran’s progress and healthcare engagement. However, only a minority reported awareness of the full range of PCAFC services. Limitations: There was a low response rate to the survey, which may have implications for generalisability to the whole population of caregivers accessing PCAFC. Additionally, we rely on self-report rather than objective measures of service use and outcomes. Implications: This is the first in-depth examination of experiences of caregivers of using the innovative PCAFC model of support. It acknowledges the important role of caregivers in health and long-term (social) care delivery and can be used to inform development of strategies outside the VA healthcare system to recognise caregivers. Findings suggest that a system-wide program to effectively include caregivers as part of the care team should include mechanisms to help connect caregivers with an array of resources, options from which to find those which best fit their personal needs and preferences.
Informal care plays a significant role in the care system for older people in the United Kingdom, and this is projected to increase considerably in the next three decades as the population ages. Understanding these trends requires a good quality measurement of informal care. In this study, the authors compare care-givers’ responses to different informal care questions from the English Longitudinal Study of Ageing (ELSA) to investigate the influence of question design on the self-reporting of informal care. They also analyse spousal care dyads in order to model discrepancies in the reporting of care provision between spouses to provide an insight into the reliability of informal care measurements. The authors find that the most common measures used are likely to be under-estimating both the scale and scope of informal care, and they recommend careful consideration of the content of informal care survey questions in order to operationalise the measures of informal care activities.
Objectives: Qualitative research has suggested that spousal experiences of discontinuity in their relationship with a person who has dementia (i.e. the relationship is experienced as radically changed) may contribute to heightened feelings of burden, entrapment, isolation, guilt and intolerance of behaviours that challenge. By contrast, continuity in the relationship may contribute to a greater sense of achievement and gratification from providing care. The present study served as a quantitative test of these suggestions. Method: A convenience sample of 71 spouses of people with dementia completed three questionnaires - the Zarit Burden Interview (ZBI), the Positive Aspects of Caregiving measure (PAC) and the Birmingham Relationship Continuity Measure (BRCM). Results: In accordance with the hypotheses, the experience of greater relationship continuity (higher BRCM scores) was correlated with fewer negative emotional reactions to caregiving (lower ZBI scores; rho = −.795) and more positive emotional reactions (higher PAC scores; rho = .764). Conclusions: The study provided some quantitative support for suggestions arising from qualitative research about how perceptions of continuity/discontinuity in the relationship may impact on the caregiving spouse's emotional well-being. Helping couples to maintain a sense of continuity and couplehood may assist their emotional adjustment to dementia.
Objective: Previous literature has examined burden and depression predominately as unitary constructs in relation to dementia caregiving. No studies thus far have examined gender differences in the specific components of burden and depression in dementia caregivers. The current study examined whether empirically validated dimensions of caregiver burden differed by gender for dementia caregivers. Methods: The sample consisted of 211 dementia caregivers enrolled in a longitudinal intervention study. Only baseline functioning was evaluated in this study. Levels of burden were assessed using the Zarit Burden Interview (ZBI), and levels of depression were assessed using the Center for Epidemiologic Studies Depression Scale (CES-D). Results: Factor analysis revealed three facets of burden: impact of caregiving on the caregivers’ lives, guilt, and frustration/embarrassment, and four facets of depression: depressed affect, somatic activity, positive affect, and interpersonal feelings. Overall burden (p < .001) and impact of caregiving on the caregivers’ life (p < .001) were significantly higher in females. Overall levels of depression (p = .018), somatic and retarded activity (p = .018), depressed affect (p = .005), and positive affect (p = .012) were significantly higher in females. Conclusions: Findings suggest that distressed male and female dementia caregivers experience caregiving differently. Results from this study could be used to identify gender-specific interventions related to subtypes of burden and depression to optimize quality of life for caregivers.
Objectives: Dyadic activating interventions support both people with dementia and their informal caregivers to maintain activities. For a person-cantered approach referrers need insight in how specific interventions might meet individual needs, characteristics, and preferences of a dyad. This study aimed to develop a set of indicators for three psychosocial dyadic, activating interventions. Method: This study used the ‘RAND Appropriateness Method’ directed at agreement on indicators within a panel of experts. Qualitative research had identified 31 relevant conceptual indicators. A panel of 12 experts in dementia care rated the extent to which these indicators are recognizable in their clinical practice. Indicators with median ratings in the top third segment of the nine-point-scale were considered recognizable. Results: 18/31 conceptual indicators (58%) were found recognizable in 75%–90% of the panelists’ clients. Although consensus on the recognisability of some indicators about the need or preference for physical and social activities was lacking, the respondents nevertheless recommended including these in regular assessments. Other indicators were judged too difficult to recognize in clinical practice. Conclusion: The selected indicators offer guidance to referrers on what intervention(s) to choose, and discuss the appropriateness in a shared decision-making process, thus contributing to a person-cantered approach.
Objectives: Pre-death grief plays a significant role in dementia caregiving, and has adverse impacts on caregivers. It was the purpose of the present study to examine whether a cognitive-behavioural intervention including a grief intervention module could increase caregivers’ coping with pre-death grief and whether these effects could be maintained as of a six-month follow-up assessment. Method: In a randomized-controlled trial examining the effectiveness of a cognitive-behavioural intervention, 273 caregivers were allocated to either an intervention or control group. Intervention group participants received 12 therapy sessions over six months; all participants completed a measure of pre-death grief. The analysis was conducted using latent change models. In the first model, study group was included as a predictor of change in pre-death grief; subsequent models also included care situation and sociodemographic variables. Results: The burden due to pre-death grief was reduced for intervention but not control group participants at the time of the six-month follow-up assessment (Cohen's d = −0.361). When controlling for changes in the care situation and sociodemographic variables, the treatment effect was also found in the assessment completed post intervention (Cohen's d = −0.248). Conclusion: Results indicate that a cognitive-behavioural intervention including grief-specific strategies can successfully foster caregivers’ coping with loss and reduce burden of pre-death grief.
Objectives: Caregiving results in both positive and negative outcomes for caregivers. The purpose of this study was to examine compassion fatigue and compassion satisfaction in family caregivers. Methods: Using a cross sectional descriptive survey design with a convenience sample, 168 family caregivers of individuals with chronic illness completed a web-based survey. Measures included a demographic questionnaire, Caregiver Burden Interview, Brief COPE inventory and Professional Quality of Life (ProQOL). Results: The majority of participants (71%) reported high levels of caregiver burden, moderate to low levels of the compassion fatigue concepts of burnout (59.5%) and secondary traumatic stress (STS) (50%), and moderate levels of compassion satisfaction (82.7%). Regression analyses showed that caregiver burden, time caregiving, coping, social support, and caregiving demands explained a total variance of 57.1%, F(11,119) = 14.398, p < .00 in burnout and a total variance of 56%, F(11, 119) = 13.64, p < .00 in STS. Specifically, behavioural disengagement is a predicator that may indicate early compassion fatigue. Conclusion: Findings suggest that despite high caregiver burden and moderate compassion fatigue, family caregivers are able to provide care and find satisfaction in the role. This study supports the use of compassion fatigue and compassion satisfaction as alternative or additional outcomes to consider in future research.
Objectives: This study describes the process evaluation of the experience sampling method (ESM) intervention ‘Partner in Sight’ for spousal caregivers of people with dementia. The aim was to determine internal and external validity of the intervention and provide information for future implementation in clinical practice. Method: Qualitative and quantitative data on sampling quality (recruitment and randomization, reach) and intervention quality (relevance and feasibility, adherence to protocol) were evaluated using descriptive statistics and conventional content analysis. Results: The participation rate included 31.4%. Due to recruitment difficulties and time constraints the original goal to include 90 caregivers was not met. The intervention was largely performed according to protocol and well received by the participants. Overall, the ESM-derived feedback was considered supportive and increased participants’ awareness of their feelings and behaviour. A large variance was found in the extent to which caregivers applied the feedback into their daily lives. The importance of the personal coach to provide face-to-face feedback and stimulate caregivers to implement new insights into their daily lives was emphasized. Suggestions for improvement were to reduce the time intensity of the programme, to better tailor the programme content to one's personal situation, and to improve the ESM device. Conclusion: Although recruitment barriers were encountered, results indicate that future implementation of the ESM intervention ‘Partner in Sight’ is likely to be feasible in regular health care. If the intervention turns out to be (cost-) effective, a fine-tuned version of the programme could be a valuable addition to the current health care system.
Objective: The aim of this study was to update the literature on interventions for carers of people with dementia published between 2006 and 2016 and evaluate the efficacy of psychoeducational programs and psychotherapeutic interventions on key mental health outcomes (depression, anxiety, burden, and quality of life). Methods: A meta-analysis was carried out of randomized controlled trials of carer interventions using MEDLINE, PsycINFO, Scopus, and Cochrane Central Register of Controlled Trials. Results: The majority of studies were conducted in Western and Southern Europe or the United States and recruited carers of people with Alzheimer's disease or dementia grouped as a whole. The most commonly used outcome measures were depression and burden across studies. The updated evidence suggested that psychoeducation-skill building interventions delivered face-to-face can better impact on burden. Psychotherapeutic interventions underpinned by Cognitive Behavior Therapy (CBT) models demonstrated strong empirical support for treating anxiety and depression and these effects were not affected by the mode of delivery (i.e. face-to-face vs. technology). A modern CBT approach, Acceptance and Commitment Therapy (ACT), seemed to be particularly beneficial for carers experiencing high levels of anxiety. Conclusions: Future research needs to explore the efficacy of interventions on multiple clinical outcomes and which combination of interventions (components) would have the most significant effects when using CBT. The generalization of treatment effects in different countries and carers of different types of dementia also need to be addressed. More research is needed to test the efficacy of modern forms of CBT, such as ACT.
Objective: Problems with everyday functioning are linked to reduced well-being in people with dementia (PwD) and their carers. However, previous research has almost solely investigated the performance of everyday activities, and global functioning without analysing individual activities. This study explored how deficits in initiating and performing individual activities were associated with carer burden and poorer quality of life of carers and PwD. Methods: Carers of people with mild dementia were recruited via 10 National Health Service Trusts, as well as through attending six carer support groups. Carers were asked to complete the revised Interview for Deteriorations in Daily Living Activities in Dementia 2 (R-IDDD2), and measures on carer burden, well-being, and person with dementia well-being. Data were analysed using correlation analysis. Results: Two hundred and seventy-two carers completed the R-IDDD2. Carers were grouped into those with low or high ratings of well-being based on the mean scores. All but three activities on the initiative and/or performance scale were significantly associated with carer burden and carer and PwD quality of life. Engaging in hobbies and maintaining an active social life were most strongly associated with carer and PwD well-being. Initiating computer use, driving, and medication management were not related to carer burden. Conclusions: Findings from this study can have direct implications for improving care management early in the disease. Post-diagnostic support needs to provide more opportunities for PwD, and their carers, to engage in social groups, whilst interventions targeted at living well with dementia need to particularly improve the initiative of engaging in individual hobbies.
Objective: To update a 2010 meta-review of systematic reviews of effective interventions to support carers of ill, disabled, or older adults. This article reports on the most promising interventions based on the best available evidence. Methods: Rapid meta-review of systematic reviews published from January 2009 to 2016. Results: Sixty-one systematic reviews were included (27 high quality, 25 medium quality, and nine low quality). The quality of reviews has improved since the original review, but primary studies remain limited in quality and quantity. Fourteen high quality reviews focused on carers of people with dementia, four on carers of those with cancer, four on carers of people with stroke, three on carers of those at the end of life with various conditions, and two on carers of people with mental health problems. Multicomponent interventions featured prominently, emphasizing psychosocial or psychoeducational content, education and training. Improved outcomes for carers were reported for mental health, burden and stress, and wellbeing or quality of life. Negative effects were reported in reviews of respite care. As with earlier work, there was little robust evidence on the cost-effectiveness of reviewed interventions. Conclusions: There is no ‘one size fits all’ intervention to support carers. There is potential for effective support in specific groups of carers, such as shared learning, cognitive reframing, meditation, and computer-delivered psychosocial support for carers of people with dementia. For carers of people with cancer, effective support may include psychosocial interventions, art therapy, and counselling. Carers of people with stroke may also benefit from counselling. More good quality, theory-based, primary research is needed.
Using two waves of survey data on family carers caring for older adults with multiple chronic conditions in Ontario and Alberta, this article provides a sex and gender analysis of 194 carers' health outcomes. Gender and sex differences were examined on the following health outcomes: general self-efficacy; physical and mental health composite scores; overall quality of life; and the Zarit Burden Inventory – as well as experiences with work interference for carer-employees. Multivariate ordinary least squares linear regressions were used to estimate the effects of sex and gender, controlling for the carer's socio-demographic and geographic characteristics, as well as for the characteristics of the care recipients. Sex and gender were found to have differentiated effects on each health outcome examined, providing evidence for specifically targeting health interventions by sex and gender. First, sex matters, as illustrated by the fact that female carers were found to be experiencing more negative health impacts than male carers (shown in the physical composite score and the quality of life score). This suggests that health-related interventions need to be targeted at female carers. Further, male carers are more likely to experience less carer burden, and more work interference, than female carers. Second, gender matters, as illustrated by the fact that masculine and androgynous genders showed significantly positive associations with general self-efficacy. This suggests that carers with feminine and undifferentiated gender roles experience more challenges with general-self-efficacy and could benefit from training and educational interventions to enhance their confidence in the caring role.
Purpose: Head and neck cancer (HNC) patients suffer from significant morbidity, which may introduce challenging care demands and subsequent stress-induced mind-body interactions for informal caregivers. This prospective study evaluated patient and caregiver predictors of diurnal cortisol rhythm among HNC caregivers during radiation treatment. Method: Patient-caregiver dyads completed measures at radiation treatment start (T1; n = 32) and 5 weeks into treatment (T2; n = 29). Measures included the Functional Assessment of Cancer Therapy-Head and Neck, the Caregiver Quality of Life (QOL) Index-Cancer, the Caregiver Reaction Assessment, the Medical Outcomes Social Support Survey, and the Eating Assessment tool. Patients also received a clinical swallowing evaluation using the Functional Assessment of Oral Intake Scale. Caregiver cortisol concentrations were assessed from salivary samples at T1 and T2. Results: Caregiver cortisol slope became significantly flatter during radiation treatment. Greater caregiver schedule burden was associated with a flatter cortisol slope (b = .35, p = .05) in caregivers at T1. Lower patient functional QOL (b = .41, p = .05) and lower overall caregiver QOL at T1 (b = .39, p = .04) were each separately associated with a flatter cortisol slope in caregivers over treatment. Conclusions: Results suggest the presence of a mind-body interaction in HNC caregivers. Dysregulation in diurnal cortisol rhythm in caregivers was significantly associated with increased caregiver schedule burden and lower patient and caregiver QOL. Targeted interventions developed for HNC caregivers may help to prevent negative health outcomes associated with dysregulated cortisol.
Background: A UK charity, Macmillan Cancer Support has funded a local intervention, whereby carers of people affected by cancer and other long-term conditions at end of life are offered a bespoke package of support. Aim: This short report describes the qualitative experiences of carers in receipt of the intervention. Design: Qualitative research utilising in-depth interviews. Discussions were digitally recorded and transcribed verbatim. Data were analysed using thematic analysis. Setting/participants: Participants were carers (n = 10) in receipt of the intervention. Interviews were conducted between August and September 2014 in Lincolnshire (England). Results: Five themes from the interviews were identified: (1) Awareness and advertising, (2) focus of support on the carer, (3) modes of communication, (4) personal attributes and skills of the support worker (5) streamlining and signposting. Conclusion: The intervention was successful within a social care setting. The participants had no overtly negative opinions on the service in its current format and all held it in high regard. Carers felt a sense of reassurance from having background support and maintained that their situation would have been worse had this support not been there.
Background: An informal care-giver is generally an unpaid individual who looks after the personal and medical needs of the patient. India being a country of traditions and family values, this informal care-giver is usually a family member. These care-givers, being untrained in this job undergo tremendous stress. Available research studies the burden individually in the relatives of chronically medically ill patients and those of psychiatrically ill patients. Furthermore the previous research targets the burden in individual diseases. This study stands out as it makes a comparison between the two broad groups, taking into account almost all possible chronic diseases in each group. Methods: This is a cross-sectional analytical descriptive study that was conducted on the family caregivers of chronically medically ill and psychiatrically ill patients, using the Caregiver's Burden Scale. Data were analyzed by SPSS 20 statistical software and Pearson correlation coefficient tests. Significant difference between area of caregiver burden of medicine and psychiatric patients was tested using relative deviate 'Z' of SEDM test at 5% level of significance. Result: There is a significant difference between each category of Caregiver's Burden Scale among chronically medically ill and psychiatrically ill patients. (P < 0.05). Conclusion: The outcome of this study may help the health care providers in designing stress relief programs for primary care-givers. Overall this study may help better delivery systems of care for both the chronically medically ill as well as psychiatrically ill patients, by proper specific framing and psycho education programs for the caregivers of specific chronic illnesses.
Background Clinicians, researchers and politicians are seeking to better assess caregiver's needs. Challenges exist in broadly implementing this so as to provide appropriate support. The aim of this review was to compile self-administered instruments for assessment of caregiver's needs that are deemed to be scientifically robust. Methods The Medline database was searched for publications reporting self-administered instruments assessing caregiver's needs with acceptable psychometric properties. These instruments were analyzed in terms of the development context, target population, concept, purpose, structure, content and psychometric properties. The dimensions of the needs were listed and categorized. Results A total of nine self-administered instruments were analyzed. They averaged 32 items, they were specifically developed for a targeted subpopulation of caregivers and dedicated to epidemiological research. Response devices were based on Likert scales. The main dimensions of the needs identified were 'Health and Care', 'Psychological - Emotional Support', 'Information - Knowledge', 'Social Life - Work - Finance'. None was specifically geared toward caregivers for the elderly, children or teenagers. In the absence of transcultural validation, no instrument was directly usable in Europe. Conclusions Assessing caregivers' needs is a key part in providing caregivers with appropriate support. The development of self-administered instruments constitutes a complex field that is still underexplored at the international level; strict specifications with psychometric validation are essential. To be efficient, the instrument should be integrated in a larger process including: upstream, recognition, identification and assessment of the overall situation of the caregiver; and downstream, guidance, establishment and follow-up of a suitable action plan.
Introduction: The aim of this literature review is to identify the most common tools used to measure burden in carers of people with Parkinson's disease (PD), heart failure (HF), multiple sclerosis (MS) and chronic obstructive pulmonary disease (COPD). Method: Databases such as Medline, PsycINFO, CINAHL and Academic Search Complete were searched. Studies in which carer burden was measured were included. Results: Zarit Burden Inventory and Caregiver Reaction Assessment were most commonly used to measure carer burden, regardless of the chronic condition. A wide range of other instruments were also used. Conclusions: Even though a range of tools are available, further improvements are necessary in order to enable healthcare professionals to identify carers experiencing high burden.
Time spent on family care of frail older people is difficult to substantiate because of its complex nature. The aim of this study is to check the content validity of existing questionnaires measuring the time spent on caring. Comparing the activities mentioned in the questionnaires with those from other data sources (three validated scales measuring the functional limitations in day-to-day activities and a qualitative study) enabled identification of important drawbacks in the questionnaires reviewed. A comprehensive list of activities was built in order to help future researchers to conduct effective data collection and thereby enable an in-depth analysis of family care supply.
Background In the last decade, the number of patients supported by informal caregivers has substantially increased. In the Italian healthcare context, informal caregivers’ experience of care is a new under-recognized construct, and no assessment tool is available. Measuring caregivers’ experience is important since in Italy the relationship between doctors and patients/relatives is still considered asymmetrical. The current study presented development and initial psychometric properties of the Health Services and Caregiver Experience questionnaire (HSCE), a self-report tool of caregivers’ global experience for inpatient clinical care, including factor structure, reliability and its relations with measures of coping strategies and family strain. Methods The HSCE was administered to a total of 503 informal caregivers of inpatients admitted at an Italian University Hospital (mean age = 48.08 years, SD = 14.82, females = 61.40%). Family Strain Questionnaire-Short Form (FSQ-SF) and Coping Orientations to Problems Experience-New Italian Version (COPE-NVI) were administered to a subgroup of participants. First-grade relatives were 73.10%, whereas 13.20% were second-grade relatives and 13.70% were home-watch caregivers. Results Exploratory and confirmatory factor analyses showed a structure with a single factor, which explained 64.80% of the total variance. All the items had salient loadings. In the two subsamples, HSCE had excellent internal consistency (Cronbach’s alpha = 0.95-0.97). Positive moderate correlations were found between HSCE and FSQ-SF scores (r = 0.45, p < .05), between HSCE and COPE-NVI scale scores, including COPE-NVI positive attitude and COPE-NVI problem solving scores (rs’ range = 0.51-0.57, p < .05). Moreover, a positive large correlation between HSCE and COPE-NVI social support scores emerged (r = 0.72, p < .05). Correlations were not significant between HSCE scores and COPE-NVI turning to religion and avoidance strategies. Conclusions The HSCE resulted to have good psychometric properties. Better caregivers’ experience correlated with stronger family strain but also with better problem solving and social support. The study expanded knowledge on caregiver’s experience in Italy and indicated that HSCE is a valid and reliable tool to measure this under-recognized construct in Italy.
Introduction Carers of peritoneal dialysis patients may suffer from burden, the characteristics of which differ from burden due to dementia, cancer or other dependent conditions. Aims To ascertain the reliability and validity of the Peritoneal Dialysis Carer Burden Questionnaire (PDCBQ), previously created, and to design the burden scale. Methods Observational, multicentre study of carers and patients on peritoneal dialysis for more than 3 months. Sociodemographic characteristics of patients and carers, patient dependency, perceived health (SF-36) and carer burden (Zarit scale) were recorded, as well as PDCBQ via 3 scales: dependence, subjective burden and objective burden. Results One hundred seven patients and their carers from 8 hospitals were evaluable. Carers were mainly women (83.2%), aged 57.50 ± 14.69 years, and 36.4% worked out of the home. The internal consistency of the Zarit scale and the PDCBQ were high (Cronbach's α between 0.808 and 0.901). Significant correlation was found between the Zarit scale and PDCBQ (r = 0.683). The concordance analysis between three degrees of Zarit scale and PDCBQ tertiles was good or acceptable (Kendall τ-b: 0.570, p < 0.001). The exploratory factor analysis of the main factors revealed 3 factors, which were successfully correlated with the design of the PDCBQ. A new carer burden scale was designed. Conclusions The study shows good reliability with high internal consistency of the PDCBQ. Factorial analysis shows good construct and good correlation, and acceptable concordance with the Zarit burden scale confirmed criterion validity. The questionnaire is suitable to be applied in clinical practice.
Background: Living at home following a diagnosis of dementia can be difficult for both the person living with dementia (PwD) and their family caregivers (FCG). Active group music participation may provide an avenue for emotional release, offer psychosocial support to caregivers and stimulate meaningful interaction between caregivers and loved ones with dementia. Therapeutic music interventions also have the capacity to facilitate reminiscence and social engagement and can help to manage challenging symptoms associated with dementia, such as anxiety, apathy, and agitation. Method: This feasibility study examined the acceptability of a 20-week therapeutic group singing intervention (Remini-Sing) and quantitative research assessments for PwD/FCG dyads living in the community. Quantitative measures for the following outcomes were tested for sensitivity and acceptability: relationship quality (PwD and FCG); life satisfaction, caregiver satisfaction, flourishing, and depression for FCGs; and anxiety, apathy, agitation, and quality of life for PwD. Quantitative assessments were conducted before, during (midway) and after 20 weeks of participation in a therapeutic singing group attended by the PwD and FCG together. The Remini-Sing intervention incorporated vocal warm ups, singing familiar songs, learning new songs, and opportunities for social interaction. Qualitative interviews were conducted with all dyads that completed the intervention. Results: Twelve PWD/FCG dyads were recruited and enrolled in the study. High participation and retention rates indicated that the intervention was received favorably by participants. There were no statistically significant changes on measures from pre to post intervention. However, favorable baseline scores on relationship quality and wellbeing measures were sustained over the 20-week intervention. The testing of these measures for feasibility also revealed that some were too difficult for PwD and thus yielded questionable results, some were potentially less relevant, and there were likely floor and ceiling effects on several of the measures utilized. Conclusions: This study demonstrated good feasibility for a research protocol and therapeutic group singing intervention for community-dwelling PwD and their FCGs. Participant reflections and researcher observations yielded useful information guiding the selection of quantitative outcome measures for future research in this area.
Objective To study the level of carer reported distress in mild dementia, over a 3‐year period. Methods This study is part of the Norwegian DemVest‐study and utilises data from carers of people with mild dementia (n = 223). Those diagnosed with dementia with Lewy bodies (DLB, n = 63) and Alzheimer's disease (AD, n = 97) were included together with other dementia types (n = 63). The Relatives' Stress Scale was used to assess the level of reported distress in carers. Descriptive and a linear mixed effects models including diagnosis, time, and the interaction between time and diagnosis were performed. Results Carer distress in mild dementia increased significantly over time (P = 0.011), particularly from baseline until 2 (P = 0.001) years follow‐up. Carer distress in people caring for those with AD increased significantly, from baseline until 2 (P = 0.047) and 3 (P = 0.019) years follow‐up. Distress in carers of people with DLB was high at baseline and remained relatively stable across the 3‐year period. However, admission to a nursing home during the first year of follow‐up was associated with a significantly lower reported carer distress in those caring for a person with DLB (P = 0.002), compared with those caring for a person with DLB living at home. Conclusion Being a carer to a person with mild dementia is associated with increasing distress. However, the burden of distress changes with the diagnosis, time, and situation, which highlights the dynamic nature of the caring role. Findings have important implications for health services for people diagnosed with mild dementia and their carers.
Aim To evaluate the effect of a targeted community‐based psychosocial intervention on self‐efficacy outcomes for care recipient/carer dyads living with early‐stage dementia. Background There is increasing interest in the role of self‐efficacy and self‐management structures in determining positive outcomes for people with dementia. The assumption is that care recipient/carer dyads who receive early support to identify and adjust to dementia‐related changes will cope better in the long term. Design An explanatory sequential mixed‐method design was employed. Primarily quantitative with qualitative data providing a supportive secondary role to expand on and illuminate the quantitative findings. Methods Eighty‐eight dyads were recruited and allocated on a regional basis to an intervention or control group. Intervention group dyads received the Early Diagnosis Dyadic Intervention. Control group dyads received two information manuals. Quantitative data were collected at three time points. Qualitative data were collected via evaluation questionnaires and semistructured interviews. Results Intervention structure, content, and delivery were acceptable to the dyads but few quantitative self‐efficacy findings reached statistical significance. Improvements in self‐efficacy were evident in the postintervention evaluation qualitative responses where dyads expressed greater confidence in identifying and accessing community support. Conclusion There is an urgent need for effective psychosocial interventions to help reduce the impact of dementia symptoms on patients, carers, and society. This study makes an important contribution to our understanding of the capacity of psychosocial interventions to improve self‐efficacy outcomes for care recipient/carer dyads with early‐stage dementia while also illustrating the challenges associated with measuring self‐efficacy in the early stages of the condition.
Background: Caring for persons with dementia (PWD) can create “caregiver burden,” which is associated with negative outcomes for caregivers and PWD. The ZBI (Zarit Burden Interview) is a widely used unitary measure of caregiver burden. However, recent research has found caregiver burden to be multi-dimensional. The purpose of this study was to explore the factor structure of the ZBI within a sample of UK caregivers. A secondary aim was to identify variables that predicted burden dimensions found. Methods: A total of 110 unpaid community caregivers of PWD completed the ZBI. They also completed the EACQ (Experiential Avoidance in Caregiving Questionnaire), DEX (Dysexecutive Questionnaire), PACS (Positive Aspects of Caregiving Scale), and a demographic questionnaire. ZBI data were analyzed via exploratory factor analysis (principal axis factoring). Relationships between burden factors and other variables were studied using Pearson correlations and multiple regression. Results: Analysis identified three burden factors, namely direct impact of caregiving, uncertainty around the future, and frustration/embarrassment. A direct impact of caregiving and frustration/embarrassment has been found previously. Uncertainty over the future is a new factor, which was predicted by adult-child caregiver role, highlighting that spouses and adult children are likely to have different burden experiences. Additionally, uncertainty over the future and frustration/embarrassment were inversely predicted by PACS, suggesting that being mindful of positive aspects of caregiving may function as a protective factor for burden. Conclusions: This study found caregiver burden to be multi-dimensional and uncovered a novel factor in uncertainty over the future, which warrants further exploration. Burden factors were associated with a range of modifiable variables that could be targeted within health and social care interventions to improve outcomes for caregivers and PWD.
The aim of this qualitative study was to explore the impact of a home-based, personalised reminiscence programme facilitated through an iPad app on people living with dementia and their family carers. Semi-structured interviews were used to collect data from 15 people living with dementia and 17 family carers from a region of the United Kingdom. The interviews were recorded, transcribed and analysed using thematic analysis. Six key themes emerged related to usability (‘It’s part of my life now’); revisiting the past (‘Memories that are important to me’); home use (‘It was homely’); impact on the person living with dementia (‘It helped me find myself again’); gains and abilities (‘There is still so much inside’) and impact on relationships (‘It’s become very close’). These themes highlighted the impact of the reminiscence experience at an individual and relationship level for people living with dementia and their carers. The reminiscence experience also appeared to facilitate the development of new insights among participants that emphasised abilities and gains rather than disabilities and losses. The significance of personal memories was a core theme although this was not without its challenges, particularly if memories were distressing. The reminiscence experience was differentiated by individual roles. Carers tended to become more relationship-focused, whereas people living with dementia highlighted the significance of learning new skills. The study concluded that individual specific reminiscence supported by an iPad app can have a positive impact on people living with dementia and their carers at an individual and relationship level.
The use of an Acceptance and Commitment Therapy (ACT) and Schema group intervention with the mental health carer population has a strong justification: 1) There is a theoretical rationale for the role of experiential avoidance and negative expectations of relationships (and associated cognitive fusion) in underpinning mental health carers interpersonal problems; 2) Correlational data demonstrates that the processes targeted by ACT (i.e. experiential avoidance) and Schema therapy (i.e. negative expectations of relationships) are associated with mental health carer's experiences of interpersonal problems; 3) Existing studies demonstrate positive results for ACT based interventions with caregiver populations; 4) Multicomponent carer interventions with two conceptually different approaches have achieved more positive outcomes in prior studies. The current study aims to pilot an ACT and Schema group intervention for mental health carers’ interpersonal problems, examining acceptability and conducting preliminary assessment of effectiveness.
Surveys indicate that many Australians would prefer to die at home, but relatively few do. Recognising that patients and their families may not have the support they need to enable end‐of‐life care at home, a consortium of care providers developed, and received funding to trial, the Palliative Care Home Support Program (PCHSP) across seven health districts in New South Wales, Australia. The programme aimed to supplement end‐of‐life care in the home provided by existing multidisciplinary community palliative care teams, with specialist supportive community care workers (CCWs). An evaluation of the service was undertaken, focussing on the self‐reported impact of the service on family carers (FCs), with triangulation of findings from community palliative care teams and CCWs. Service evaluation data were obtained through postal surveys and/or qualitative interviews with FCs, community palliative care teams and CCWs. FCs also reported the experience of their loved one based on 10 items drawn from the Quality of Death and Dying Questionnaire (QODD). Thematic analysis of surveys and interviews found that the support provided by CCWs was valued by FCs for: enabling choice (i.e. to realise end‐of‐life care in the home); providing practical assistance (“hands‐on”); and for emotional support and reassurance. This was corroborated by community palliative care teams and CCWs. Responses by FCs on the QODD items indicated that in the last week of life, effective control of symptoms was occurring and quality of life was being maintained. This study suggests that satisfactory outcomes for patients and their families who wish to have end‐of‐life care in the home can be enabled with the additional support of specially trained CCWs. A notable benefit of the PCHSP model, which provided specific palliative care vocational training to an existing community care workforce, was a relatively rapid increase in the palliative care workforce across the state.
Objective: Our aim was to evaluate the effectiveness of a modified 8‐week reminiscence therapy on the burden, positive experience, and life satisfaction of older spouse caregivers and the life satisfaction of stroke survivors. Methods: We conducted a randomized controlled trial by using 75 older stroke couples recruited from communities in Zhengzhou, China. We randomly assigned participants to 1 of 3 groups: Group 1 (G1, 25 couples, all attend intervention) and Group 2 (G2, 22 couples, only caregivers attend intervention), who participated in a modified 8‐week reminiscence therapy, and a waiting list (control) group (G3, 28 couples). Interviewers blinded to treatment group assignment administered the life satisfaction to both stroke survivors and caregivers, caregiver burden, and positive experience for caregivers, at preintervention, immediately postintervention, and at 1 month and 3 months after cessation of the intervention. Results: We found a statistically significant interaction between treatment groups and assessment time points for the 4 outcome measures (P < .001). Although the effects were decreased after intervention at 1 month, the improvement in caregivers' positive experience, life satisfaction, burden, and life satisfaction of stroke survivors were still significant (P < .001). Conclusions: The use of a modified 8‐week reminiscence therapy in this study sample improved the life satisfaction of stroke survivors and their spouse caregivers, improved the positive experience of caregivers, and decreased the burden of caregivers.
Objectives: This study aims to analyse the level of distress caused by delirium in patients' family and their nurses, and to identify factors associated with psychological distress in families of older adult inpatients in Intermediate Care Units/IMCUs regarding their global experience during hospitalization. Method: A prospective pilot study was carried out with families and nurses of older adult patients (≥65 y.o.) consecutively recruited from two IMCUs in Intensive Care Medicine Service in a University Hospital. Patients with Glasgow Coma Scale ≤11, brain injury, blindness/deafness and inability to communicate were excluded. Delirium was daily assessed with Confusion Assessment Method/CAM. The distress level regarding this episode in family and nurses was measured with Delirium Experience Questionnaire/DEQ. Family psychological distress of all recruited patients was assessed with Kessler Psychological Distress Scale/K10. Results: This study included 42 inpatients (mean age/MA = 78 y.o., 50% women), 32 families (68.8% sons/daughters, MA = 50.6 y.o., 81.3% women) and 12 nurses caring for delirium patients (MA = 33 y.o., all women). A total of 12 (28.6%) patients had delirium. Distress related to this episode were higher for families than for nurses (M = 3 vs. M = 2), but differences did not reach statistical significance (Z = –1.535, p = 0.125). The hierarchical regression model explained 44.3% of variability in family psychological distress. Higher levels of psychological distress were associated with living with the patient (p = 0.029), presence of previous cognitive decline (p = 0.048) and development of delirium (p = 0.010). Conclusion: These preliminary results show that family psychological distress is higher, when older adult patients developed delirium during hospitalization. Particular attention to these family carers should be given in future development of psychological support and psychoeducational interventions.
In 2013, nearly 43.5 million Americans provided 37 billion hours of uncompensated care to their loved ones. Despite their significant contributions, family caregivers often feel inadequately prepared for their caregiving roles resulting in increased caregiver burden, which impacts their health and well-being. To enhance family caregivers’ sense of preparedness, a tailored multicomponent interdisciplinary caregiver intervention was implemented in an inpatient rehabilitation unit of an urban community hospital in the Midwest.
Feasibility of a multidisciplinary caregiving training protocol for young caregivers in families with ALS. Objectives: To assess the feasibility of a multidisciplinary young caregiver group training protocol for children and youth who provide care to a family member with ALS. Method: Peer group experiential young caregiver model based on theories of self-management and self-efficacy. Training conducted by a multidisciplinary team of therapists in ALS (PT, OT, Speech and social work), as well as assistive device vendors. Demographic data, caregiving tasks and evaluations were collected. Results: The model is feasible for both youth and therapists. Youth found benefit, skill acquisition, and mastery by asking questions, teaching back skills to the group and engaging with peers. Conclusion: This project demonstrates young caregivers will participate in training, and engage with “like” peer group. Future projects will focus on developing a structured survey and observation, testing efficacy in larger groups.
Purpose Measure Yourself Concerns and Wellbeing (MYCaW) is a validated person-centred measure of the concerns and wellbeing of people affected by cancer. Research suggests that the concerns of informal caregivers (ICs) are as complex and severely rated as people with cancer, yet MYCaW has only been used to represent cancer patients’ concerns and wellbeing. This paper reports on the development of a new qualitative coding framework for MYCaW to capture the concerns of ICs, to better understand the needs of this group. Methods This multicentred study involved collection of data from ICs receiving support from two UK cancer support charities (Penny Brohn UK and Cavendish Cancer Care). Qualitative codes were developed through a detailed thematic analysis of ICs’ stated concerns. Results Thematic analysis of IC questionnaire data identified key themes which were translated into a coding framework with two overarching sections (1) ‘informal caregiver concerns for self’ and (2) ‘informal caregiver concerns for the person with cancer’. Supercategories with specific accompanying codes were developed for each section. Two further rounds of framework testing across different cohorts allowed for iterative development and refinement of the framework content. Conclusions This is the first person-centred tool specifically designed for capturing IC’s concerns through their own words. This coding framework will allow for IC data to be analysed using a rigorous and reproducible method, and therefore reported in a standardised way. This may also be of interest to those exploring the needs of ICs of people in other situations.
Carers of individuals with eating disorders (EDs) report high levels of burden and distress and describe a number of unmet needs. As a result, a number of interventions have been designed to support carers, including the “Maudsley eating disorder collaborative care skills workshops,” which comprise six 2‐hr workshops delivered over 3 months for parents and carers of people with EDs. The current study aimed to test a proof‐of‐concept that this workshop could be effectively delivered in 1 day. An additional aim was to assess whether the workshop had direct effects on carer skills. A nonexperimental repeated measures research design was employed, giving measures before and after a 1‐day workshop. Results suggested significant increases in carer self‐efficacy and carer skills, with moderate to large effect sizes. Qualitative analyses supported these results whilst also generating ideas to improve the 1‐day workshop.
The Texas Revised Inventory of Grief (TRIG) was developed to measure the intensity of grief after the death of a close person. It consists of two scales: TRIG I (past behaviors) and TRIG II (present feelings). Because of inconsistencies in previous validations, the instrument needs to be further validated, hence the aim of this study was to evaluate the psychometric properties of the TRIG in a sample of bereaved family caregivers in Sweden. The TRIG was translated to Swedish according to standard principles, and 129 bereaved family caregivers completed the questionnaire. Parallel analysis was used to decide the number of factors to extract, followed by confirmatory factor analysis. An ordinal version of Cronbach's alpha was used to evaluate the internal consistency of the scales. Construct validity was tested against the Hospital Anxiety and Depression Scale (HADS). The factor analyses resulted in one factor being retained for both scales. The internal consistency was excellent (α > 0.9) for both scales. Construct validity was supported by strong correlations between TRIG I and TRIG II as well as moderate correlations between the TRIG scales and HADS. In conclusion, the TRIG has sound psychometric qualities and the two scales should be treated as unidimensional measures of grief. Hence, the instrument is suited to be used in the context of palliative care.
The aim of this pilot study was to test the feasibility and acceptability of a family carer intervention for carers of patients with high-grade glioma (HGG). The intervention consisted of: (1) an initial telephone assessment of carer needs; (2) a personalised tabbed resource file; (3) nurse-led home visit; and (4) ongoing telephone support. Two consumer representatives reviewed the intervention resources. The intervention was then piloted with participants who were the primary carer for patients undergoing treatment for HGG in Western Australia. Two consumers provided feedback on the resource, and 10 carers participated in the pilot. Positive feedback was received about the resource manual and intervention. Suggestions were also made for changes which were implemented into the trial. The surveys were shortened based on feedback. Participants identified a large range of issues during nursing assessments which would not otherwise be identified or addressed for carers receiving routine care. As a result of providing the intervention, the nurse was able to make referrals to address needs that were identified. This pilot study enabled us to refine and test the Care-IS intervention and test the feasibility and acceptability of proposed survey instruments. We were also able to estimate recruitment and retention and the overall study timeline required for the randomised controlled trial we are now conducting. It has also demonstrated the role of the nurse who delivered the intervention and allowed us to refine communication and referral pathways.
Background: Informal caregivers of older adults provide critical support for their loved ones but are subject to negative health outcomes because of burden and stress. Interventions to provide information and resources as well as social and emotional support reduce burden. Mobile apps featuring access to information, assistance with scheduling, and other features can automate support functions inexpensively and conveniently and reach a greater proportion of caregivers than otherwise possible. Objective: The aim of this study was to identify mobile apps geared towards caregivers of older adults, catalog features, and suggest best practices for adoption based on empirical findings of beneficial interventions in the caregiving literature. Methods: Search for apps focused on ones catered for caregivers of older adults in Google Play and iTunes, compiling their features, and identifying features reflecting categories of support identified in successful intervention studies to negative caregiver outcomes. Intervention research indicates that provision of information and resources, assistance in practical problem solving, coordinating care among multiple caregivers, and emotional support reduce caregiver burden. Results: Despite approximately over 200,000 mobile health–related apps, the availability of mobile apps for caregivers is relatively sparse (n=44 apps) as of October 2017. Apps generally addressed specific categories of support, including information and resources, family communication, and caregiver-recipient interactions. Few apps were comprehensive. Only 8 out of 44 (18%) had features that addressed three or more categories. Few apps provided specific stress reduction exercises for caregivers, which is important for reducing burden. Conclusions: Mobile apps have the potential to provide resources, just-in-time information for problem-solving, and stress reduction strategies for caregivers. Many apps offer functions that have been shown to reduce burden and improve health outcomes in caregivers, but few provide emotional support. Using an evidence-based practice approach, mobile apps for caregivers can provide multiple beneficial support functions. Apps can serve a much larger proportion of this highly underserved population in their mobile form than more traditional means, improving their health and quality of life.
Purpose The purpose of this paper is to reflect on the development of a recovery-oriented training programme for mental health care-givers. It also considers the effectiveness of using participatory research methods that promote involvement of people with diverse expertise to co-produce this programme. It presents a rationale for developing recovery-oriented training, which employs blended learning, comprising face-to-face and e-learning. Design/methodology/approach A small advisory group consisting of professionals, experts-by-experience (service users) and -by-caring (care-givers) and an academic developed a blended learning programme about the recovery approach for mental health carer-givers. This paper details the participatory approach supported by an action research cycle that contributed to the design of the programme, and the specific impact of experiential knowledge on its development. Findings Reflections on the advisory group process are described that led to the co-production of the course. This leads to consideration of the value of using this research approach to develop a carer-focused programme. The content of the recovery-oriented training programme is presented which adopts blended learning. This leads to discussion of potential of this format to improve carers’ access to training. Originality/value It is proposed that this recovery-oriented course, building on a previous study, has the potential to positively influence outcomes for the training programme participants (the care-givers) and the person they support. It is suggested that blended learning may in part overcome some of the barriers carers experience to accessing and participating in traditional interventions. Reflections on the process of co-production underline the value of participatory research in designing this recovery-oriented course for carers.
The progression of dementia can severely compromise interpersonal connection and relationship quality between people living with dementia (PwD) and their family caregivers (FCG), leading to social isolation and poor quality of life for both. Therapeutic group singing (TGS) is a socially engaging, stimulating, and supportive pursuit that community-dwelling PwD and their FCG can participate in together. This study aimed to build on the findings from previous research by undertaking a thematic analysis of interviews with nine PwD (five women, four men; mean age = 79.1 years) and nine FCG (five women, four men; mean age = 75.7 years). The interviews explored participants’ perspectives and experiences of a 20-week TGS intervention, underpinned by Kitwood’s model of person-centered care. Inductive thematic analysis resulted in the emergence of five themes which described how TGS for PwD and their FCG: (1) included supportive therapeutic facilitation and design features; (2) made group singing more accessible; (3) fostered new empathic friendships; (4) enhanced relationships between PwD and FCG; and (5) led to personal feelings of wellbeing for both PwD and FCG. Affinity with others who had similar life experiences and challenges created a sense of mutual understanding and camaraderie, which made group singing accessible without fear of judgment and social stigmas. For some PwD/FCG dyads, TGS meant they could continue a lifelong passion for singing together, while others enjoyed participating in singing together for the first time. Both PwD and FCG participants described personal feelings of acceptance, improved social confidence, mood, and purpose. Further, participants valued mental stimulation from TGS such as learning new skills and memory support. A model explaining relationships between themes suggests that TGS with person-centered facilitation features for PwD/FCG dyads led to affinity among group members with ripple effects, which enhanced accessibility to group singing, the formation of empathic friendships, PwD/FCG relationship quality, and personal wellbeing for both PwD and FCG. Psychoemotional, social and cognitive benefits from TGS described by participants in this study are known to promote self-identity, healthy relationships, and quality of life. This research highlights a need for improved availability of TGS for community-dwelling PwD/FCG dyads.
Background: Family caregivers provide the foundation for long-term home care of stroke survivors. The overwhelming stress associated with caregiving hinders the ability of family caregivers to utilise their internal and external resources to cope with this situation, thereby placing their own health at risk. We conducted a randomised controlled trial of a strength-oriented psychoeducational programme on conventional stroke rehabilitation for family caregivers. Objectives: To evaluate the effectiveness of a strength-oriented psychoeducational programme on the caregiving competence, problem-solving coping abilities, caregiver’s depressive symptoms, caregiving burden and resources (family functioning, social support) and physical health (such as caregiving-related injury), as well as potential placement of stroke survivors. Design: A prospective multi-centre and single-blinded randomised controlled trial stratified by survivors’ history of stroke. Setting and participants: Adult stroke patients and their family caregivers were recruited from the medical wards of a regional acute and two rehabilitation hospitals in the Eastern New Territories of Hong Kong. Methods: The design of the trial was based on the relational/problem-solving model. Family caregivers of stroke survivors who had been admitted to the study hospitals completed a set of questionnaires before randomisation, immediately, one- and three-months post-intervention. The control group received usual care, whereas the intervention group received an additional 26-week strength-oriented psychoeducational programme (two structured individual face-to-face pre-discharge education sessions on stroke and its associated caregiving skills and six biweekly post-discharge telephone-based problem-solving coping skills training sessions). Data were analysed using the generalized estimating equation and multiple regression models and chi-square tests. Results: We recruited 128 caregiver–survivor dyads. The intervention group demonstrated significantly greater improvements throughout the study (p < 0.01) in terms of caregiving competence, problem-solving coping abilities and social support satisfaction. This group also displayed significantly greater improvements in terms of family functioning (p < 0.05) at one-month post-intervention, an increased number of social support (p < 0.001) and a lower level of burden at three-month post-intervention. However, there was no significant effect on enabling stroke survivors to remain in their home. Post-hoc analysis showed a significant and indirect effect of problem-solving coping abilities, which suggested its mediating effect on caregiving competence of stroke caregivers. Conclusions: Findings suggest that incorporating a strength-oriented psychoeducational programme into the existing stroke rehabilitation protocol can foster a healthy transition to caregiving among family members of stroke survivors.
Background :Informal caregivers are invaluable partners of the health care system. However, their caring responsibilities often affect their psychological wellbeing and ability to continue in their role. It is of paramount importance to easily identify caregivers that would benefit from immediate assistance. Methods: In this nonexperimental cohort study, a cross-sectional analysis was conducted among 362 informal caregivers (mean age 64.1 years, SD ± 13.1) caring for persons with high care needs (mean age 78.6 years, SD ± 15.0). Caregivers were interviewed using an interRAI-based self-reported survey with 82 items covering characteristics of caregivers including key aspects of wellbeing. A factor analysis identified items in the caregiver survey dealing with subjective wellbeing that were compared against other wellbeing measures. A screener, called Caregiver Wellbeing Index (CWBI), consisting of four items with response scores ranging from 0 to 2 was created. The CWBI was validated in a follow-up study in which 1020 screeners were completed by informal caregivers of home care clients. Clinical assessments of the care recipients (n = 262) and information on long-term care home (LTCH) admission (n = 176) were linked to the screener dataset. The association between the CWBI scores and caregiver and care recipient characteristics were assessed using logistic regression models and chi-square tests. The reliability of CWBI was also measured. Results: The CWBI scores ranging from zero to eight were split in four ‘wellbeing’ levels (excellent, good, fair, poor). In the validation study, fair/poor psychological wellbeing was strongly associated with caregiver reports of inability to continue in their role; conflict with family; or feelings of distress, anger, or depression (P < 0.0001). Caregivers caring for a care recipient that presented changes in behavior, cognition, and mood were more likely to present fair/poor wellbeing (P < 0.0001). Additionally, caregivers with high CWBI scores (poor wellbeing) were also more likely to provide care for someone who was admitted to a LTCH (OR 3.52, CI 1.32–9.34) after controlling for care recipient and caregiver characteristics. The Cronbach alpha value 0.89 indicated high reliability. Conclusion: The CWBI is a valid screener that can easily identify caregivers that might benefit from further assessment and interventions.
The purpose of this study was to quantify the general cancer support activities that long‐term carers of head and neck cancer (HNC) survivors engage in; and the relationships between these care activities and psychological well‐being. Respondents answered a survey detailing their caring activities, the amount of time that they spent on those activities and how comfortable they felt engaging in them. Psychological well‐being was assessed by the Depression Anxiety Stress Scales‐21. A total of 197 carers took part in the study. The majority (76%) were women, mean age 57.4. Mean time since diagnosis was 6.2 years. In the past month, 45% of carers did not spend any extra time per week helping their relative/friend with general caring activities such as cleaning the house; 31% spent 1–19 hr/week and 23% spent 20 or more hours/week doing so. Most carers were comfortable assisting their relative/friend, though more carers felt uncomfortable assisting with HNC‐specific support tasks (31% uncomfortable helping with medication) compared with general support tasks (7% uncomfortable helping with appointments). Feeling uncomfortable with head and neck‐specific care tasks was a significant predictor of experiencing depression and anxiety.
Objective Psychosocial interventions are historically underutilized by cancer caregivers, but support programs delivered flexibly over the Internet address multiple barriers to care. We adapted Meaning‐Centered Psychotherapy for cancer caregivers, an in‐person psychotherapeutic intervention intended to augment caregivers' sense of meaning and purpose and ameliorate burden, for delivery in a self‐administered web‐based program, the Care for the Cancer Caregiver (CCC) Workshop. The present study evaluated the feasibility, acceptability, and preliminary effects of this program. Methods Eighty‐four caregivers were randomized to the CCC Workshop or waitlist control arm. Quantitative assessments of meaning, burden, anxiety, depression, benefit finding, and spiritual well‐being were conducted preintervention (T1), within 2‐weeks postintervention (T2), and 2‐ to 3‐month follow‐up (T3). In‐depth semistructured interviews were conducted with a subset of participants. Results Forty‐two caregivers were randomized to the CCC Workshop. Attrition was moderate at T2 and T3, with caregiver burden and bereavement as key causes of drop‐out. At T2 and T3, some observed mean change scores and effect sizes were consistent with hypothesized trends (eg, meaning in caregiving, benefit finding, and depressive symptomatology), though no pre‐post significant differences emerged between groups. However, a longitudinal mixed‐effects model found significant differential increases in benefit finding in favor of the CCC arm. Conclusions The CCC Workshop was feasible and acceptable. Based on effect sizes reported here, a larger study will likely establish the efficacy of the CCC Workshop, which has the potential to address unmet needs of caregivers who underutilize in‐person supportive care services.
Purpose: The Carer Support Needs Assessment Tool (CSNAT) was developed for use among family caregivers in palliative care for assessment of their support needs. The purpose of this study was to translate and evaluate the validity and reliability of the CSNAT in a sample of Swedish family caregivers and nurses in a palliative care context. Methods: Data for this validation study was collected during 2016 in the context of palliative home care in two larger Swedish cities. The study was conducted in three stages to reach conceptual, semantic, operational and measurement equivalence between the original UK version and the Swedish version. Stage I consisted of translation to Swedish. In Stage II, cognitive interviews were performed with 8 family caregivers and 10 nurses. Data were analyzed based on relevance, clarity and sensitivity. In Stage III, the CSNAT and related self-rating measures (caregiver burden, preparedness for caregiving and quality of life) were completed by 118 family caregivers. Data quality, construct validity and test-retest reliability were evaluated. Results: The CSNAT items were considered relevant and useful to identify areas of support needs. The Swedish CSNAT showed sound psychometric properties with satisfactory data quality and few problems with missing data across items (1.8%-6.1%). All items except one correlated as expected (rho>0.3) with caregiver burden, supporting construct validity. All items had satisfactory test-retest reliability (κw=0.45-0.75). Conclusions: This study further adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family caregivers in palliative care.
An abstract of a study by Tucker et al defining the barriers and opportunities associated with measuring family and caregiver satisfaction with palliative care services in inpatient and ambulatory settings is presented. Hospital Consumer Assessment of Healthcare Providers and Systems surveys which are mandated by CMS and the subsequent Value Based Purchasing payment system has brought increased attention to the potential effects of quality PC services through an emphasis on communication skills, coordination of care, pain management and goals of care discussions.
Context Patients with terminal illnesses often require surrogate decision makers. Prior research has demonstrated high surrogate stress, and that despite standards promoting substituted judgment, most patients do not want their surrogates to make pure substituted judgments for them. It is not known how best to help loved ones fulfill the surrogate role. Objectives To test the effectiveness of an intervention to help surrogate decision makers. Methods One hundred sixty-six patients (41% with amyotrophic lateral sclerosis and 59% with gastrointestinal cancers) and their surrogates at two university medical centers were randomized to an intensive nurse-directed discussion of the end-of-life decision control preferences of the patient (TAILORED) or a discussion of nutrition (CONTROL) 163 completed baseline interviews and underwent the intervention. Results Twelve patients died during follow-up and 137 dyads completed the study. Post-intervention, using all available data, TAILORED patients and surrogates became more likely to endorse mutual surrogate decision making, that is, a balance of their own wishes and what the surrogate thinks best (adjusted odds compared with baseline for patients = 1.78, P = 0.04 adjusted odds for surrogates = 2.05, P = 0.03). CONTROL patients became 40% less likely to endorse mutual surrogate decision making (P = 0.08), and CONTROL surrogates did not change significantly from baseline (adjusted odds = 1.44, P = 0.28). Stress levels decreased for TAILORED surrogates (impact of events scale = 23.1 ± 14.6 baseline, 20.8 ± 15.3 f/u, P = 0.046), but not for CONTROL (P = 0.85), and post-intervention stress was lower for TAILORED than CONTROL (P = 0.04). Surrogates' confidence was uniformly high at baseline and did not change. Caregiver burden (Zarit) increased from 12.5 ± 6.5 to 14.7 ± 8.1 for TAILORED (P < 0.01), while not changing for CONTROL, yet satisfaction with involvement in decision making was higher at follow-up for TAILORED than for CONTROL (71% vs. 52%, P = 0.03). Conclusion TAILORED patients and surrogates who completed the study adopted a more mutual decision-making style, balancing their own wishes with what the surrogate thinks would be best for them. Surrogates reported less stress and more satisfaction. Confidence was high at baseline and did not change. There was a modest increase in caregiver burden. These findings suggest that interventions like TAILORED might positively impact surrogate decision making.
Aim. The aim of this study was to evaluate a heart failure education programme developed for patients and carers in Thailand. Background. Heart failure is major health problem. This is the first trial of a family-based education programme for heart failure patients and carers residing in rural Thailand. Design. Randomized controlled trial. Methods. One hundred patient-carer dyads attending cardiac clinics in southern Thailand from April 2014 - March 2015 were randomized to usual care (n = 50) or a family-based education programme (n = 50) comprising face-to-face counselling, a heart failure manual and DVD and telephone support. Assessments of heart failure knowledge, health-related quality of life, self-care behaviours and perceived control were conducted at baseline, three and six months. Results. Linear mixed-effects model revealed that patients and carers who received the education programme had higher knowledge scores at three and six months than those who received usual care. Among those who received the education programme, when compared with those who received usual care, patients had better self-care maintenance and confidence, and health-related quality of life scores at three and six months, and better self-care management scores at six months, whereas carers had higher perceived control scores at three months. Conclusion. Addressing a significant service gap in rural Thailand, this family-based heart failure programme improved patient knowledge, self-care behaviours and health-related quality of life and carer knowledge and perceived control.
Rationale: Given the high number of young adults caring for a family member, and the potential for adverse psychosocial outcomes, there is a need for a screening tool, with clinical utility, to identify those most vulnerable to poor outcomes and to aid targeted interventions. Objectives: (i) To determine whether current knowledge from cancer literature regarding young carers is generalisable to chronic conditions and, therefore, whether an existing screening tool could be adapted for this population. (ii) To develop a measure of unmet needs in this population and conduct initial psychometric analysis. Design: This was mixed method interviews in study one informed measure development in study two. Inclusion criteria were as follows: having a parent with a chronic condition and being aged 16-24 years. In study 1, an interpretative phenomenological analysis was conducted on interviews from seven young adults (age range 17-19 years). Study 2 explored factor structure, reliability and validity of the Offspring Chronic Illness Needs Inventory (OCINI). Participants were 73 females and 34 males (mean ages 18.22, SD = 1.16 18.65, SD = 1.25). Main outcome measures OCINI, Depression Anxiety and Stress Scale, and the Adult Carers Quality of Life Scale. Results: Interviews communicated that the impact of their parent's condition went unacknowledged and resulted in psychosocial, support and informational needs. An exploratory principal axis analysis of the OCINI yielded five factors. Significant and positive correlations were found between unmet needs and stress, anxiety, and depression, and inversely with quality of life. Conclusions: The scale has applications in clinical settings where these young people, who are at risk of negative psychological outcomes, may be assessed and unmet needs targeted appropriately. References
Aim: Neuromyelitis optica (NMO) is a rare neuro-inflammatory condition characterized by acute relapses causing severe visual or physical disability. The impact on family members and their experiences have not been studied. The study aims were to explore the lived experience of partners of people with NMO and to investigate potential carer burden in this population. Method: A mixed-method design was used; 11 partners of people with NMO completed semi-structured interviews; 54 partners completed Zarit Burden Interview and Hospital Anxiety and Depression Scale. Results: Three qualitative themes influenced partners’ quality of life (QoL): role/relationship; it’s all about them; and the impact of NMO. Life changed dramatically for participants after the first NMO attack, necessitating responsibility for physical, financial, social, and emotional support. As NMO symptoms improved and stabilized, freedom and QoL for spouses also improved, albeit with on-going worries regarding the impact of potential devastating future relapses. Quantitative findings showed mild/moderate carer burden (46%), mild/moderate anxiety (59%), and mild/moderate depression (24%). No partner indicated severe carer burden, anxiety, or depression. Conclusion: Participants regarded themselves as partners rather than carers whom require assessment and support for their emotional and health well-being. Health-care professionals need to acknowledge the important role partners play in the dynamics of the family unit, through greater discussion and inclusion.
Implications for Rehabilitation
The purpose of this study was to provide an overview of caregiver prevalence and characteristics and to estimate the impact of caregiving on health care utilization and expenditures among AARP® Medicare Supplement insureds to inform caregiver intervention strategies. A subgroup with live-in partners was used to investigate the additional effect of live-in health status on caregiver health. Multivariate regression models were utilized to determine caregivers' characteristics and associated impacts on their health care utilization and expenditures. Among respondents (n = 18,928), 14.9% self-identified as caregivers. The strongest characteristics included being younger, healthier, but reporting depression or loneliness. Caregivers of sicker live-ins were female, older and indicated moderate loneliness caregivers of healthier live-ins were younger, healthier, but reported severe loneliness. Caregivers had significantly lower inpatient admissions and medical and prescription drug expenditures. These results indicated an adverse impact on psychological health associated with caregiving but no evidence of a negative impact on physical health.
Purpose: This study aimed to determine how carer distress and psychological morbidity change over time following a patient’s diagnosis of high-grade glioma (HGG) and identify factors associated with changes in carers’ psychological status. Methods: Carers of patients with HGG planned for chemoradiotherapy were recruited to this longitudinal cohort study. Carers completed questionnaires during patients’ chemoradiotherapy and 3 and 6 months later including the following: the Distress Thermometer (DT); General Health Questionnaire-12 (GHQ-12); and three single-item questions about understanding of information presented by health professionals, confidence to care and preparedness to care for their relative/friend. Linear latent growth models were applied. Results: The time 1 questionnaire was completed by 118 carers, of these 70 carers provided responses to the third time point. Carer distress and psychological morbidity were most prominent proximal to diagnosis, but remained high over time. Sixty-two percent of participants had moderate or high distress on the DT at time 1, 61% at time 2 and 58% at time 3. Scores on the DT and the GHQ-12 correlated significantly at all time points as did changes in scores over time (p < .001). However, for individual carers, the DT or GHQ-12 scores at one time point did not strongly predict scores at subsequent time points. Conclusion: In carers of patients with HGG, distress levels are consistently high and cannot be predicted at any time point. Carers should be monitored over time to identify evolving psychological morbidity. The single-item DT correlates highly with GHQ-12 scores and is a suitable tool for rapid repeated screening.
Context Previous studies have supported the psychometric properties of the 22-Item Zarit Burden Interview (ZBI-22) scale among family caregivers of people with various disorders, including Parkinson's disease (PD). However, its short forms have not been psychometrically tested among PD family caregivers, and available psychometric analyses have not accounted for the ordinal nature of item-level data. Objectives To assess the psychometric properties of the ZBI-22 and its short forms among family caregivers of people with PD, while taking account for the ordinal nature of data. Methods Cross-sectional postal survey ZBI-22 data from 66 family caregiver members (59% women mean age 69.6 years) of a local Swedish PD society branch were analyzed according to classical test theory methods based on polychoric/polyserial correlations. Results Missing item responses were = 5%. Corrected item-total correlations were = 0.42 and floor/ceiling effects were <20%, besides for the briefest (4- and 1-item) short forms (20% and 40% floor effects, respectively). Reliability was good for all scales (ordinal alpha 0.89-0.95). External construct validity was in general accordance with a priori expectations. Short forms demonstrated good criterion-related validity (rs 0.87-0.99) and discriminative ability (area under the curve, 0.91-0.98) relative to the full ZBI-22. Conclusion This study provides support for the reliability and validity of the ZBI-22 and its various short forms for use among PD family caregivers. In studies where caregiver burden is a central outcome, either ZBI-22 or ZBI-12 is suggested for use other short forms can be used when caregiver burden is of less central focus or for clinical screening.
Background: Unpaid, informal carers or caregivers play an important role in supporting people living with dementia but the role can be challenging and carers themselves may benefit from support. Alzheimer’s, dementia or memory cafés are one such form of support . These cafés are usually provided in the voluntary sector and are a place where people with dementia and those supporting them, usually family carers, can meet with others in similar situations. Methods: Using semi-structured interviews, this qualitative study explored the experiences of 11 carers from five dementia cafés in and around London, England. Results: Thematic analysis resulted in the identification of four key themes. Cafés provide a relaxed, welcoming atmosphere where carers can go where they feel supported and accepted. Café attendance often brought a sense of normality to these carers’ lives. Carers and those they care for look forward to going and often enjoy both the activities provided and socialising with others. Other highlighted benefits included peer support from other carers, information provision and support from the volunteer café coordinators. Despite diversity in how the cafés were run and in the activities offered, there were many reported similarities amongst carers in the value ascribed to attending the cafés. Conclusions: Dementia cafés appear to be a valuable, perhaps unique form of support for carers giving them brief respite from their caring role. Future research incorporating mixed methods is needed to understand the perspectives of those living with dementia.
Objectives: Stigma compounds the burden experienced by family members of those with a mental illness. This study aimed to examine burden experienced by carers of people with schizophrenia or affective disorders and to explore the relationship between carer burden and stigma. Method: A cross sectional descriptive study was conducted with patient-carer dyads involving 67 patients diagnosed with schizophrenia and 51 diagnosed with affective disorder. Carers completed the Zarit Burden Interview (short version) and stigma was measured using the Stigma Scale and the Internalised Stigma of Mental Illness Scale. Results: Carer burden was significantly higher for schizophrenia than affective disorders. Female carers experienced significantly higher burden than male carers. Diagnosis, gender of carer and stigma predicted 22% of the variance in carer burden, with gender identified as a significant predictor. Conclusions: Reducing stigma related to disclosure of mental illness in carers has the potential to reduce carer burden.
The lay caregiving role is integral to advanced cancer care but places carers' health at risk. A supportive General Practitioner (GP) can help primary lay carers manage their health, if they disclose their concerns. A Needs Assessment Tool for Caregivers (NAT-C) was developed for carers to self-complete and use as the basis of a GP consultation, then tested in a randomised controlled trial. This paper reports a qualitative research study to determine the usefulness and acceptability of the NAT-C in the Australian primary care setting. Convenience samples of 11 carers and 5 GPs were interviewed between September 2010 and December 2011 regarding their experiences with and perceptions of the NAT-C. Open-ended questions were used, and the transcripts were analysed qualitatively to identify themes and patterns. Three major themes were identified: (a) Acceptability of the intervention (b) Impact of the intervention on the GP-patient relationship and (c) Place of the intervention in advanced cancer care. This simple checklist was acceptable to carers, although some were uncertain about the legitimacy of discussing their own needs with their GP. Carer-patients could not be certain whether a GP would be willing or equipped to conduct a NAT-C-based consultation. Such consultations were acceptable to most GPs, although some already used a holistic approach while others preferred brief symptom-based consultations. Although the NAT-C was acceptable to most carers and GPs, supportive consultations take time. This raises organisational issues to be addressed so carers can seek and benefit from their GP's support.
This study aimed to identify the experiences and outcomes of participation in Families4Families Inc., a peer support network for families following acquired brain injury (ABI) in South Australia. Prior to the programme's launch in January 2013, new members of the network were invited to participate in pre- and post-programme phone interviews to identify benefits and limitations of the programme, and identify outcomes of participation. Fifty-five members (20 people with ABI 35 caregivers) participated in pre-programme interviews, with 34 repeating the final interview at the end of the 18-month pilot programme in June 2014. Interview transcripts were imported into Nvivo 10, where comments were analysed using inductive data-driven thematic analysis. Responses to rating questions were analysed using SPSS 20. Attendance records indicate that 39 of 55 participants were involved in the programme (12 active, 27 occasional) and 16 participants did not attend. Active attenders reported that they provided and received higher levels of support and information than those who attended only occasionally, including the significantly higher development of new friendships and contacts (P < 0.001). Statistically significant improvements in knowledge of services by both active and occasional attenders were reported (P = 0.014 and 0.026 respectively) with non-significant improvements for non-attenders. Qualitative analysis of interview transcripts revealed three major thematic benefits of involvement. These include the opportunity to access information, receive emotional support and give back to others in the network. Reasons for no longer participating in the network are explored. Peer support programmes can enable families to share experiences, knowledge, positive coping strategies, understanding of systems and develop new social networks that last beyond the programme. The continuing need for extended regional access is highlighted, with follow-up and referral to counselling and other services also critical to ensure members are appropriately supported through difficult personal experiences.
Despite the important role that family caregivers play managing the care of persons with complex health needs, little is known about how caregivers perceive themselves to be recognized and valued by health care professionals. Our objective was to develop and validate a novel measure, the CAregiver Perceptions About Commun Ication with Clinical Team members (CAPACITY) instrument. Questions focus on perceived quality of communication with the health care team and the extent to which caregivers believe that the health care team considers their capacity and preferences in decision making. A confirmatory factor analysis supported a two-factor solution addressing communication and capacity. Internal consistency reliability was .90 for the communication domain and .93 for the capacity domain. Correlations between these two subscales and individual difference measures provided evidence of convergent and discriminant validity. The CAPACITY instrument may be a useful performance measure that quantifies the extent to which caregivers' experience person- and family-centered health care.
Background: Reforms in the Dutch healthcare system in combination with the aging of the population will lead to a strong increase in the demand for informal care in the Netherlands. A hip fracture is one of the most important causes of hospital admissions among frail elderly and informal caregivers experience stress that may have significantly negative impact on the caregivers’ Quality of Life. The purpose of the study was to determine the nature, intensity and the care-related Quality of Life (CarerQoL) of informal caregivers of elderly patients in the first six months after a hip fracture. In this cross-sectional study, were interviewed the primary informal caregivers of patients with a hip fracture about the informal care provided after one, three or six months following the injury. The CarerQoL of the informal caregivers was measured with the CarerQoL-7D instrument. Results: In total, 123 primary informal caregivers were included. The CarerQoL-7D score was on average 83.7 (SD 15.0) after one, three and six months, and there were no major differences between the measurement time points. The average amount of informal care provided per patient per week was 39.5 during the first six months. Partners of patients with a hip fracture provided significantly more hours of informal care (β 34.0; 95% CI: 20.9 – 47.1). Female informal caregivers stated a significantly lower level of CarerQoL (β -7.8; 95% CI: -13.3 – -2.3). Female caregivers were 3.0 times more likely to experience relational problems (aOR 3.02; 95% CI 1.08-8.43). Caregivers provided care at 6 months were associated with physical health problems (aOR 2.54; 95% CI 1.05-6.14). Conclusions: Informal caregivers, especially partners, are faced with providing care of greater intensity to elderly patients during the first six months after a hip fracture. The CarerQoL was not associated with the intensity of the provided informal care. However, this study shows that a considerable group of informal caregivers for elderly patients with a hip fracture experienced relational, physical and mental health problems that stemmed from providing intensive informal care during the first six months.
Background: The Heart Failure Caregiver Questionnaire (HF-CQ®) was developed to assess subjective outcomes of heart failure caregivers. The HF-CQ® comprises 21 questions on three domains, namely physical, emotional/psychological and lifestyle. The objective of this study was to evaluate the psychometric properties of the HF-CQ®. Methods: Patients (n = 150) with heart failure and their primary caregivers (n = 150) were recruited from 11 sites in USA. Caregivers completed the HF-CQ® and additional questionnaires, namely Caregiver Reaction Assessment, Work Productivity and Activity Impairment questionnaire, EuroQol-5 domain, and the Hospital Anxiety and Depression Scale. Patient-completed Global Impression of Severity, construct validity, concurrent validity, reliability and responsiveness of the HF-CQ® were also assessed. Results: In the physical and lifestyle domains, all items showed acceptable validity. No high correlations between HF-CQ® scores and other caregiver-completed instruments, including the Hospital Anxiety and Depression Scale, Work Productivity and Activity Impairment questionnaire, EuroQol-5 domain or Caregiver Reaction Assessment, were reported. The intra-class correlation coefficient exceeded the threshold for reliability (>0.7) across the physical well-being (0.785), emotional/psychological (0.797), lifestyle (0.787) and total scores (0.850), indicating acceptable reliability. Internal consistency results using Cronbach’s alpha showed the total aggregate score of 0.942 to be reliable. In the responsiveness analyses, each of the three scales and the total score showed responsiveness to changes defined by the Caregiver Global Impression of Severity. The overall caregiver burden score increased with increased severity of illness in the cared-for patients. Conclusions: The study provides initial evidence for the acceptable validity of the HF-CQ® as an instrument to measure heart failure caregiver burden.
Background: Caregivers are responsible for the home care of family members with mental-health disorders often experience changes in their life that can generate stress and burden. The aim of this study was to identify factors associated with the burden of caregivers of family members with mental disorders. Methods: This cross-sectional study was conducted with a non-probability sample of family caregivers, whose patients attended a community services program, the Psychosocial Care Centers, in three cities in the southwest region of Goiás State, Central Brazil. Data collection took place from June 2014 to June 2015. The participants were 281 caregivers who completed a sociodemographic questionnaire and the Zarit Burden Interview (ZBI). Bivariate analyses (t test, analysis of variance, and Pearson correlation) were performed, and variables with values of p < 0.10 and gender were included in a multiple-linear regression model. Values of p < 0.05 were considered significant. Results: The caregivers were mostly female and parents of the patients, were married, with low education, and of low income. The mean ZBI score was 27.66. The factors independently associated with caregivers’ burden were depression, being over 60 years of age, receiving no help with caregiving, recent patient crisis, contact days, and having other family members needing care. Conclusions: This study identified factors that deserve the attention of community services and can guide programs, such as family psycho-education groups, which may help to minimize or prevent the effects of burden on family caregivers responsible for patients’ home care.
Purpose of the Study: To (a) assess the validity and reliability of the 9-item Positive Aspects of Caregiving (PAC) scale among a national sample of caregivers for older adults with functional limitations, (b) develop a shorter version (short-PAC [S-PAC] scale) and assess its psychometric properties, and (c) investigate both scales’ measurement equivalence/invariance (ME/I) across language of administration (Chinese/English/Malay). Design and Methods: Scale/item measurement property assessment, confirmatory factor analysis (CFA), testing the “original” 2-factor model (6 items: first factor; 3 items: second factor), and exploratory FA (EFA) of the 9-item PAC scale was done. Consequently, alternate CFA models were tested. The S-PAC was developed and subjected to CFA. For both scales, convergent (correlation with caregiver esteem) and divergent (correlation with caregiver depressive symptoms) validity, and language ME/I was assessed. Results: For the 9-item PAC scale, the “original” 2-factor CFA model had a poor fit; its EFA and scale/item measurement properties supported a single factor. Among alternate CFA models, a bi-factor model (all nine items: first factor [overall PAC]; six items: second factor [self-affirmation]; three items: third factor [outlook-on-life]) had the best fit. The bi-factor CFA model also had a good fit for the S-PAC scale, developed after eliminating 2 items from the 9-item PAC scale. Both scales demonstrated convergent and divergent validity, and partial ME/I across language of administration. Implications: Both the 9-item PAC and 7-item S-PAC scales can be used to assess positive feelings resulting from care provision among family caregivers of older adults with functional limitations.
Background: Unlike other chronic diseases, dementia caregiving is associated with enormous psychological burden, which stresses the need for caregivers-directed psychosocial interventions. Aim: This randomized controlled trial (RCT) was conducted to evaluate the short-term efficacy of a multi-component psychosocial intervention program for informal caregivers of persons with neurocognitive disorders in Alexandria, Egypt. Methods: Informal caregivers (120) were randomly assigned into intervention and control groups. The intervention group (60) participated in a multi-component program of 8 sessions, including psycho-education, group cognitive-behavioral therapy, and group social support. Program primary outcomes were assessed after program termination (post-1), and three months later (post-2). Measured outcomes included caregivers' knowledge, depression and anxiety symptoms, and perceived burden. Results: Caregivers' depression, anxiety, and perceived burden demonstrated significant drop at post-1, and post-2 compared to the control group (P< 0.001). The intervention group showed significant negative absolute change on depression, anxiety, and perceived burden measures, while on the dementia-related knowledge measure, a significant positive absolute change was found at post-1, and post-2 (P< 0.001), in comparison to controls. All outcome measures recorded a large effect size; the highest was for knowledge (partial eta2 = 0.98), and the least was for perceived burden (partial eta2 = 0.71). Conclusion: A multi-component psychosocial intervention for caregivers of persons with neurocognitive disorders demonstrated a short-term efficacy in reducing their burden, depression, and anxiety, as well as improving caregivers' knowledge. However, further research is needed to investigate long-term efficacy of the intervention.
Background: Anxiety and depression are common among patients with acute illness and their families. In oncology, psychosocial services addressing these symptoms are increasingly part of regular practice. Less is known about psychiatric distress among patients with acute neurological injury (ANI) and their family caregivers. To highlight this inequity in psychosocial intervention across medical services, we compared anxiety and depressive symptomatology shortly following diagnosis among patients facing incurable cancer or ANI and their family caregivers. Methods: Recruited from the same hospital, participants were patients within 8 weeks of receiving a diagnosis of incurable cancer (N = 350) and their family caregivers (N = 275; total patient/caregiver dyads = 275) and patients hospitalized in the Neuroscience ICU in the past 2 weeks (N = 81) and their family caregivers (N = 95; total dyads = 75). Participants reported anxiety and depressive symptoms using the Hospital Anxiety and Depression Scale. Symptomatology was compared across illnesses using independent samples t-tests and multiple regressions controlling for differences in sample demographics. Results: Patients with ANI (M = 6.90) reported greater anxiety symptoms than those with cancer (M = 5.31, p < .001), while caregivers for patients with ANI (M = 5.45) reported greater depressive symptoms than caregivers for patients with cancer (M = 3.81, p < .001). Results remained when controlling for demographic differences between samples. Conclusion: This is the first cross-comparison of psychiatric distress in patients and family caregivers affected by two distinct, life-threatening illnesses early in the illness trajectory. Findings support the priority of addressing psychiatric distress among patients with ANI and their family caregivers, as has been emphasized in the psychosocial oncology field.
Objectives: Standardized measurement of caregiver stress is a component of Medicare’s new health care benefit supporting care planning for people with dementia. In this article we identify existing measures of caregiver stress, strain and burden and propose specific criteria for choosing tools that may be suitable for wide use in primary care settings. We reviewed 22 measures and identified one, the Kingston Caregiver Stress Scale (KCSS), which met all the proposed criteria but had not been studied in a U.S. sample. We conducted a psychometric evaluation of KCSS to determine its potential usefulness as a care planning tool with a U.S. sample. Methods: We examined the internal consistency, test-retest reliability, component structure, and relationship to depression and anxiety in 227 dementia caregivers at two U.S. sites. Results: The KCSS has high internal consistency and test-retest reliability, a strong factor structure, and moderate to high correlations with caregiver depression and anxiety. Conclusion: KCSS is a good candidate for use as part of comprehensive care planning for people with dementia and their caregivers. Clinical Implications: Routine assessment of caregiver stress in clinical care may facilitate timely intervention and potentially improve both patient and caregiver outcomes.
Background: The recovery process of a psychiatric patient is related to his primary informal caregiver's style of coping with stress. There is insufficient literature on validations of instruments that measure coping styles in this population. Objective: To adapt and validate a scale to measure coping strategies in primary informal caregivers. Method: The adapted scale was based on the Extreme Coping Scale of López‐Vázquez and Marván. Items from that scale were adapted for application to informal caregivers. The scale was administered to 122 primary informal caregivers of patients from two psychiatric institutions in Mexico. Psychometric analyses were performed to determine the scale's properties. Results: The scale was composed of 20 items (six less than in the original scale) and two factors: (i) active coping (Cronbach's alpha = .837) and (ii) passive coping (Cronbach's alpha = .718). Discussion: The findings are discussed in the light of the importance of studying the relationship between coping styles and the well‐being of both informal caregivers and psychiatric patients. Implications for practice: The scale could be used by health practitioners and researchers to generate strategies to support the family caregiver, as well as to measure the results of interventions.
Objectives: To estimate the number of caregivers providing assistance to community‐dwelling older persons with and without dementia and with or without substantial disability; to describe the characteristics of caregivers and care recipients in these groups; to characterize the health‐related tasks that caregivers provide; and to estimate associations between the numbers of tasks and caregiver burden. Design: Nationally representative surveys of caregivers and older adults in the United States. Setting: 2011 National Health and Aging Trends Study and National Study of Caregiving. Participants: Community‐dwelling older adults and their family caregivers, who were selected on the basis of having assisted with mobility, self‐care, household activities, transportation, or medical tasks. Measurements: Caregiver burden (emotional, physical, financial difficulties) and restrictions on social participation. Results: Although much larger proportions of older adults with dementia and disability (98.4%, n = 1.0 million) and dementia but not disability (95.5%, n = 1.3 million) received caregiving assistance, the largest absolute number of individuals receiving assistance were older adults without dementia or disability (4.0 million). Within each caregiver group, caregivers provided assistance with at least one task across domains of activity of daily living and instrumental activity of daily living–related assistance (>98%), health systems logistics (>70%), and health management (>50%). There was a significant linear association between number of tasks provided and risk of burden in virtually all caregiver groups and domains of assistance. Conclusion: Caregivers of care recipients without dementia or disability accounted for the largest absolute number of helpers. These caregivers, similar to caregivers of care recipients with dementia or disability, delivered a broad spectrum of health‐related tasks and experienced caregiver burden and restrictions on social participation. Findings support the need for interventions that address the needs of caregivers who have not typically been defined as high risk.
Background: The impact on informal caregivers of caring for people with Alzheimer's disease (AD) dementia can be substantial, but it remains unclear which measures(s) best assess such impact. Our objective was to use data from the GERAS study to assess the ability of the EuroQol 5-dimension questionnaire (EQ-5D) to measure the impact on caregivers of caring for people with AD dementia and to examine correlations between EQ-5D and caregiver burden. Methods: GERAS was a prospective, non-interventional cohort study in community-dwelling patients with AD dementia and their informal caregivers. The EQ-5D and Zarit Burden Interview (ZBI) were used to measure health-related quality of life and caregiver burden, respectively. Resource-use data collected included caregiver time spent with the patient on activities of daily living (ADL). Spearman correlations were computed between EQ-5D scores, ZBI scores, and time spent on instrumental ADL (T-IADL) at baseline, 18 months, and for 18-month change scores. T-IADL and ZBI change scores were summarized by EQ-5D domain change category (better/stable/worse). Results: At baseline, 1495 caregivers had mean EQ-5D index scores of 0.86, 0.85, and 0.82, and ZBI total scores of 24.6, 29.4, and 34.1 for patients with mild, moderate, and moderately severe/severe AD dementia, respectively. Change in T-IADL showed a stronger correlation with change in ZBI (0.12; P < 0.001) than with change in EQ-5D index score (0.02; P = 0.546) although both correlations were very weak. Worsening within EQ-5D domains was associated with increases in ZBI scores, although 68%–90% of caregivers remained stable within each EQ-5D domain. There was no clear pattern for change in T-IADL by change in EQ-5D domain. Conclusions: EQ-5D may not be the optimum measure of the impact of caring for people with AD dementia due to its focus on physical health. Alternative measures need further investigation.
Background: Despite the positive evaluation of various caregiver interventions over the past 3 decades, only very few intervention protocols have been translated to delivery in service contexts. The purpose of this study is to train care counsellors of statutory long term care insurances in problem-solving and to evaluate this approach as an additional component in the statutory care counselling in Germany. Methods: A pragmatic cluster randomized controlled trial in which 38 sites with 58 care counsellors are randomly assigned to provide either routine counselling plus additional problem-solving for caregivers or routine counselling alone. The counsellor training comprises an initial 2-day training, a follow-up day after 4 months, and biweekly supervision contacts with a psychotherapist for 6 months over the phone. The agreed minimum counselling intensity is one initial face-to-face contact including a caregiver assessment and at least one telephone follow-up contact. Caregivers who are positively screened for significant strain in their role are followed up at 3 and 6 months after baseline assessment. Main outcome are caregivers’ depressive symptoms. Discussion: While it is unclear if the expected very low amount of additional counselling time is sufficient to yield any additional effects on caregiver depression, it is also unclear if the additional problem-solving component yields to synergies with routine counselling that is based on information and case management. There are different potential individual and organisational barriers to a consistent intervention delivery like gratification for participation, time for extra work or internal motivation to participate. Trial registration: (ISRCTN23635523)
Background: Healthcare interventions that have positive effects on the stroke survivors’ health-related quality of life (HRQoL) and quality-adjusted life-years (QALYs) might also have positive effects for their spouses in terms of improved HRQoL and/or reduced spousal informal support. However, knowledge about stroke survivors’ HRQoL and QALY and the consequences for their spouses’ HRQoL and QALY is limited. Therefore, the aim of this study was to describe the HRQoL and QALY-weights in dyads of stroke survivors in comparison with dyads of healthy controls, and to study the relationship between the stroke survivors’ QALY-weights and consequences for spouses in terms of QALY-weight and annual cost of informal support, using a long-term perspective.
Methods: Data on stroke survivors, controls, and spouses were collected from the seven-year follow-up of the Sahlgrenska Academy Study on Ischemic Stroke (SAHLSIS). HRQoL was assessed by the SF-36, and the preference-based health state values were assessed with the SF-6D. The magnitude of the support was assessed with a study specific time-diary. An ordinary least squares (OLS) regression was used to estimate the association between stroke survivors’ and spouses’ QALY-weights. A two-part econometric model was used to estimate the association between stroke survivors’ QALY-weights and the time spent and cost of spouses’ informal support.
Results: Cohabitant dyads of 248 stroke survivors’ aged <70 at stroke onset and 245 controls were included in the study. Stroke survivors had lower HRQoL in the SF-36 domains physical functioning, physical role, general health, vitality (P < 0.001), and social functioning (P = 0.005) in comparison with their cohabitant spouses. There was no significant difference in HRQoL for the dyads of controls. The results from the regression analyses showed that lower QALY-weights of the stroke survivors were associated with lower QALY-weights of their spouses and increased annual cost of spousal informal support.
Conclusion: Our results show that the QALY-weights for stroke survivors had consequences for their spouses in terms of annual cost of spousal informal support and QALY-weights. Hence, economic evaluation of interventions that improve the HRQoL of the stroke survivors but ignore the consequences for their spouses may underestimate the value of the intervention.
Objectives: This study hypothesized that higher caregiving demands are related to higher perceived injustice. Furthermore, this study investigated the mediating role of perceived injustice in the link between caregiving demands and caregivers’ psychological well-being. Design: A cross-sectional design. Setting: The Pain Centre of the university medical centre. Subjects: Participants were 184 family caregivers of patients with chronic musculoskeletal pain. Main measures: Participants completed questionnaires that assessed caregiving demands (i.e. The Dutch Objective Burden Inventory), perceived injustice (i.e. The Injustice Experience Questionnaire), how much they considered different sources responsible for the injustice they experienced (i.e. A newly developed inventory), perceived burden (i.e. The Zarit Burden Interview), distress (i.e. The Depression, Anxiety, and Stress Scale), and anger (i.e. The Hostility subscale of the Symptom Checklist-90-Revised). Results: The findings showed that caregiving demands are significantly related to perceived injustice in family caregivers (r = .44; P < .001). Only a small group of family caregivers considered the patient or themselves responsible, but more than half of the caregivers considered healthcare providers at least somewhat responsible for the unjust situation. Finally, perceived injustice mediated the association between caregiving demands and burden (b = .11, CI: .04-.23) and distress (b = .05, CI: .006-.12), but not anger (b = .008, CI: -.01-.06). Conclusion: The findings suggest that perceived injustice plays an important role in the well-being of family caregivers and caregivers’ well-being may be improved by changing their perceptions about their caregiving tasks and their condition.
Background: Stroke is among the major causes of short- and long-term disability. This study aimed to understand the caregivers (CGs) stress in stroke survivors. Materials and Methods: A 22-item questionnaire was administered to 201 CGs of stroke survivors. The variables tested were physical and mental health, social support, financial, and personal problems. CGs were divided into Group A (Barthel index [BI] <75) and B (BI >75) according to patient's BI, according to gender (male and female CG) and relation; spouses (wife, husband), daughters, sons, daughter-in-law, grandchildren, and rest (father, mother, brother, sister, and in-laws). Data were analyzed using SPSS software version–21. Data were analyzed to determine which variables of the patient effects the CG stress. Results: Majority of the CGs (74.62%) were females. 65% of CGs graded their burden as moderate to severe. 81% of CGs had left their work for caregiving. More than half of the CGs felt sleep disturbance and physical strain. Psychological instability and financial burdens were reported in 3/4th of CGs. Group A CGs faced more sleep, financial, health, and social life disturbance. Patient's bladder and bowel problems, shoulder pain, patients noncooperative attitude for medication administration, and physiotherapy were more upsetting for Group A CGs. Female CGs were subjected to more sleep disturbance, physical and psychological stress, faced more difficulty regarding the patient's bladder, bowel, personal hygiene needs, and physiotherapy. Female CGs felt less motivated in caregiving than male CGs. Wives and daughters-in-law experienced more burden. Time spent and burden perceived was more by female CGs (χ2 = 15.199, P = 0.002) than males (χ2 = 11.931, P = 0.018); wives and daughters than other relations (χ2 = 32.184, P = 0.000), (χ2 = 35.162, P = 0.019). Conclusion: Our study showed that caregiving burden was predominantly shouldered by females CGs. CGs faced physical, psychological, and socioeconomic burden. The burden was more evident in female CGs and in patients with severe stroke.
Objectives: To investigate whether community-based (CO) day care with carer support according to the proven effective Meeting Centres Support Programme model is associated with higher satisfaction of people with dementia (PwD) and their informal caregivers (CG) and with a higher job satisfaction among care staff compared to traditional nursing home-based (NH) day care. Method: Data were collected in 11 NH day care centres and 11 CO day care centres. User satisfaction of PwD and CG was evaluated in the 11 NH day care centres ( n PwD = 41, n CG = 39) and 11 CO day care centres ( n PwD = 28, n CG = 36) with a survey after six months of participation. Job satisfaction was measured only in the six NH day care centres that recently transformed to CO day care, with two standard questionnaires before ( n STAFF = 35), and six months after the transition ( n STAFF = 35). Results: PwD were more positive about the communication and listening skills of staff and the atmosphere and activities at the CO day care centre. Also, CG valued the communication with, and expertise of, staff in CO day care higher, and were more satisfied with the received emotional, social and practical support. After the transition, satisfaction of staff with the work pace increased, but satisfaction with learning opportunities decreased. Conclusion: PwD and CG were more satisfied about the communication with the staff and the received support in CO day care than in NH day care. Overall job satisfaction was not higher, except satisfaction about work pace.
Background: It is estimated that global dementia rates will more than triple by 2050 and result in a staggering economic burden on families and societies. Dementia carries significant physical, psychological and social challenges for individuals and caregivers. Informal caregiving is common and increasing as more people with dementia are being cared for at home instead of in nursing homes. Caregiver burden is associated with lower perceived health, lower social coherence, and increased risk of morbidity and mortality. The aim of this trial is to evaluate the effects of information and communication technology (ICT) on caregiver burden among informal caregivers of people with dementia by reducing the need for supervision.
Methods/design: This randomized controlled trial aims to recruit 320 dyads composed of people with dementia living in community settings and their primary informal caregivers. In the intervention group, people with dementia will have a home monitoring kit installed in their home while dyads in the control group will receive usual care. The ICT kit includes home-leaving sensors, smoke and water leak sensors, bed sensors, and automatic lights that monitor the individual’s behavior. Alerts (text message and/or phone call) will be sent to the caregiver if anything unusual occurs. All study dyads will receive three home visits by project administrators who have received project-specific training in order to harmonize data collection. Home visits will take place at enrollment and 3 and 12 months following installation of the ICT kit. At every home visit, a standardized questionnaire will be administered to all dyads to assess their health, quality of life and resource utilization. The primary outcome of this trial is the amount of informal care support provided by primary informal caregivers to people with dementia.
Discussion: This is the first randomized controlled trial exploring the implementation of ICT for people with dementia in a large sample in Sweden and one of the first at the international level. Results hold the potential to inform regional and national policy-makers in Sweden and beyond about the cost-effectiveness of ICT and its impact on caregiver burden.
Trial Registration: ClinicalTrials.gov, NCT02733939. Registered on 10 March 2016.
Objective: In this study, randomized controlled interventional study pattern was used to examine the effects of the “First You Should Get Stronger” program on the caregiving burden and healthy life style behavior of caregivers of dementia patients. Methods: “Zarit Caregiver Burden Scale” and “Healthy Life Style Behavior Scale” were used. The study was completed with 40 caregivers in total with 20 in the intervention group and 20 in the control group. A statistically significant difference was determined between the “Zarit Caregiving Burden Scale” and “Healthy Life Style Behavior Scale” score averages of the intervention group that participated in the “First You Should Get Stronger” program in comparison with those of the control group. Results: It is important for the healths of caregivers to include similar programs for the caregivers of dementia patients in continuous and regular applications. Discussion: The results highlight the importance of the “First You Should Get Stronger”program significantly decreased the caregiving burden and significantly developed the healthy lifestyle behaviors of caregivers in the intervention group. Since dementia is a difficult neurological syndrome with patients cared at home, it generally wears out the caregivers significantly. It is suggested that the nurses and healthcare professionals working with dementia patients are evaluated separately and that they carry out caregiving applications within the scope of the “First You Should Get Stronger” program.
Caring for a relative with dementia is extremely challenging; conventional interventions may not be highly effective or easily available on some occasions. This study aimed to explore the efficacy of mindfulness training in improving stress-related outcomes in family caregivers of people with dementia using a meta-analytic review. We searched randomized controlled trials (RCT) through April 2017 from five electronic databases, and assessed the risk of bias using the Cochrane Collaboration tool. Seven RCTs were included in our review. Mindfulness interventions showed significant effects of improvement in depression (standardized mean difference: -0.58, [95% CI: -0.79 to -0.37]), perceived stress (-0.33, [-0.57 to -0.10]), and mental health-related quality of life (0.38 [0.14 to 0.63]) at 8 weeks post-treatment. Pooled evidence did not show a significant advantage of mindfulness training compared with control conditions in the alleviation of caregiver burden or anxiety. Future large-scale and rigorously designed trials are needed to confirm our findings. Clinicians may consider the mindfulness program as a promising alternative to conventional interventions.
Background: Partners of patients with heart failure provide both practical and emotional support. Many partners assume caregiving responsibilities without being aware of the burden related with this role. Objective: Our work has established that a psycho-educational intervention has benefits at 3, but not at 12 months for patients with heart failure. Further we had not described the long-term effects in caregivers. This study aimed to determine the 24-months effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure and study factors associated with a change in caregiver burden. Design: A randomized controlled study design, with a follow-up assessment after 24 months. Setting and participants: Partners to patients with heart failure were recruited from two hospitals in the southeast of Sweden. Intervention: A three session nurse-led psycho-educational program was tested and included psychosocial support to maintain the partners’ physical and mental functions, and perceived control. Several instrument were used to measure caregiver burden, perceived control, physical and mental health, depression and morbidity. Results: One hundred fifty-five partners were included. There were no significant differences in any index of caregiver burden or morbidity among the partners in the intervention and control groups after 24 months. Overall, the mean total caregiver burden was found to be significantly increased compared to baseline (36 ± 12 vs 38 ± 14, p < 0.05). A younger partner, less comorbidity, higher levels of perceived control, better physical health and less symptoms of depression in patients, and better mental health in the partners were factors associated with absence of increased caregiver burden over time. Discussion and conclusion: Our intervention did not significantly decrease caregiver burden or morbidity. Over time, several aspects of burden increased in both groups. To improve outcomes, individualized and targeted interventions might be beneficial. Registered on ClinicalTrials.gov Identifier NCT02398799.
Background: Despite its popularity, the latent structure of 22-item Zarit Burden Interview (ZBI) remains unclear. There has been no study exploring how caregiver multidimensional burden changed. Objective: The aim of the work was to validate the latent structure of ZBI and to investigate how multidimensional burden evolves with increasing global burden. Methods: We studied 1,132 dyads of dementia patients and their informal caregivers. The caregivers completed the ZBI and a questionnaire regarding caregiving. The total sample was randomly split into two equal subsamples. Exploratory factor analysis (EFA) was performed in the first subsample. In the second subsample, confirmatory factor analysis (CFA) was conducted to validate models generated from EFA. The mean of weighted factor score was calculated to assess the change of dimension burden against the increasing ZBI total score. Results: The result of EFA and CFA supported that a five-factor structure, including role strain, personal strain, incompetency, dependency, and guilt, had the best goodness-of-fit. The trajectories of multidimensional burden suggested that three different dimensions (guilt, role strain and personal strain) became the main subtype of burden in sequence as the ZBI total score increased from mild to moderate. Factor dependency contributed prominently to the total burden in severe stage. Conclusion: The five-factor ZBI is a psychometrically robust measure for assessing multidimensional burden in Chinese caregivers. The changes of multidimensional burden have deepened our understanding of the psychological characteristics of caregiving beyond a single total score and may be useful for developing interventions to reduce caregiver burden.
Objective: The aim of this study was to compare the efficacy of two approaches: multicomponent interventions that focus on working with the carer and dyadic interventions that work with both the carer and the person with dementia. Method: A systematic review involving a search of Medline, EMBASE, and PsycINFO in October 2015 was performed. Randomized controlled trials involving carers of people with dementia and comparing multicomponent interventions with usual care were included. Results: Pooling of all studies demonstrated that multicomponent interventions can reduce depressive symptoms, improve quality of life, reduce carer impact, and reduce behavioral and psychological symptoms of dementia as well as caregiver upset with these symptoms. We were unable to find a significant difference in the effects of dyadic interventions in comparison with carer focused interventions for these outcomes. Discussion: Although effect sizes associated with intervention are small, multicomponent interventions are relatively inexpensive to deliver, acceptable, and widely applicable.
Background: Informal care is often not included in economic evaluations in healthcare, while the impact of caregiving can be relevant for cost-effectiveness recommendations from a societal perspective. The impact of informal care can be measured and valued with the CarerQol instrument, which measures the impact of informal care on seven important burden dimensions (CarerQol-7D) and values this in terms of general quality of life (CarerQol-VAS). The CarerQol can be included at the effect side of multi-criteria analyses of patient interventions or in cost-effectiveness or utility analysis of interventions targeted at caregivers. Objective: At present, utility scores based on relative utility weights for the CarerQol-7D are only available for the Netherlands. This study calculates CarerQol-7D tariffs for Australia, Germany, Sweden, UK, and US. Methods: Data were collected among the general population in Australia, Germany, Sweden, UK, and US by an Internet survey. Utility weights were collected with a discrete choice experiment with two unlabeled alternatives described in terms of the seven CarerQol-7D dimensions. An efficient experimental design with priors obtained from the Netherlands was used to create the choice sets. Data was analyzed with a panel mixed multinomial logit model with random parameters. Results: In all five countries, the CarerQol-7D dimensions were significantly associated with the utility of informal care situations. Physical health problems were most strongly associated with the utility for informal care situations. The tariff was constructed by adding up the relative utility weights per category of all CarerQol-7D dimensions for each country separately. Conclusion: The CarerQol tariffs for Australia, Germany, Sweden, UK, and US facilitate the inclusion of informal care in economic evaluations.
Background: When trying to access interventions to improve their well-being and quality of life, family caregivers face many challenges. Internet-based interventions provide new and accessible opportunities to remotely support them and can contribute to reducing their burden. However, little is known about the link existing between the components, the use of behavior change techniques, and the outcomes of these Internet-based interventions.
Objective: This study aimed to provide an update on the best available evidence about the efficacy of Internet-based interventions for caregivers of older adults. Specifically, the components and the use of behavior change techniques and how they impact on the efficacy of the intervention were sought.
Methods: A systematic review searched primary source studies published between 2000 and 2015. Included studies were scored with a high level of evidence by independent raters using the GRADE criteria and reported caregiver-specific outcomes about interventions delivered through the Internet for caregivers of people aged 50 years and older. A narrative synthesis identified intervention components (eg, content, multimedia use, interactive online activities, and provision of support), behavior change techniques, and caregiver outcomes (eg, effects on stressors, mediators, and psychological health). The risk of bias within the included studies was assessed.
Results: A total of 2338 articles were screened and 12 studies describing 10 Internet-based interventions were identified. Seven of these interventions led to statistically significant improvements in caregiver outcomes (eg, reducing depression or anxiety, n=4). These efficacious interventions used interactive components, such as online exercises and homework (n=4) or questionnaires on health status (n=2) and five of them incorporated remote human support, either by professionals or peers. The most frequently used behavior change techniques included in efficacious interventions were provision of social support (n=6) and combinations of instructions to guide behavior change and barrier identification (n=5). The design and aim of the included studies did not permit determining exactly which component and/or behavior change technique was more efficacious in producing positive outcomes in caregivers. The risk for selection bias was low for all the studies, and low to high for performance, detection, and attrition biases.
Conclusions: In sum, Internet-based interventions that incorporate professional and social support, and provide instructions to change behavior and problem solve in an interactive manner appear to lead to positive outcomes in caregivers. Studies isolating the specific effect of components are needed to improve our understanding of the underlying mechanism of action.
Objective: The Views of Informal Carers Experiences of Services (VOICES) instrument is a postal questionnaire that has been utilized internationally to capture the experiences of end-of-life care during the last months of life. Aotearoa/New Zealand, traditionally a bicultural society, reflects both the European worldview and that of the indigenous Māori. The Māori collectivist worldview considers whānau (extended family) support as key at the end of life and privileges “kanohi ki te kanohi” (face-to-face) meetings. In such a context, how will VOICES be received? Our pilot study was designed to test the effectiveness of an adaptation of the VOICES questionnaire in the New Zealand social setting for both Māori and non-Māori. Method: Cognitive interviews were conducted with 20 bereaved whānau and family members whose relative died between January 1 and April 4, 2014, in one urban New Zealand hospital. Thematic analysis was conducted on the resulting transcripts. Results: We found that, although the questionnaire provides valuable information, administration of the current questionnaire within a bicultural context is problematic. These problems are related to its scope, cultural acceptability, structure, and content. Distribution of the VOICES questionnaire, either through the post or online, without prior consultation, also risks engaging Māori in a culturally inappropriate manner. Significance of results: These findings will prompt revisions to both the content and research approach to implementing VOICES in a bicultural context. Recommendations include prior consultation with local indigenous communities as well as utilization of a mixed-methods approach to utilizing VOICES in a bicultural context. The cognitive interview procedures employed (adjusted for a collectivist worldview) in this study may also prove useful to indigenous groups seeking to develop or adapt questionnaires within a bicultural or multicultural context.
Objective To investigate associations of objective caregiver burden, subjective caregiver burden and positive aspects of caregiving with self-reported health indicators in caregiving partners of persons with a severe physical disability (spinal cord injury).
Design Cross-sectional, observational.
Setting Community, Switzerland.
Participants Caregiving partners of persons with spinal cord injury (n=118, response rate 19.7%).
Outcome measures General health, role limitations due to physical health, role limitations due to mental health, pain intensity, mental health and vitality were assessed using items from the 36-Item Short Form Health Survey (SF-36). Three items were used to assess the frequency of different types of sleep problems.
Results Subjective caregiver burden was associated to all self-reported health indicators. A high subjective burden was linked to poorer general health (OR 6.5, 95% CI 2.0 to 21.5), more role limitations due to physical health (OR 4.2, 95% CI 1.4 to 12.8), more role limitations due to mental health (OR 3.6, 95 % CI 1.1 to 11.7), higher pain intensity (OR 4.0, 95% CI 1.4 to 11.5), poorer mental health (coefficient −17.9, 95% CI −24.5 to −11.2), lower vitality (coefficient −20.3, 95% CI −28.4 to −12.1), and more frequent sleep problems (OR 5.3, 95% CI 1.6 to 18.4). Partners who indicated positive aspects of caregiving further reported better mental health (coefficient 6.5, 95% CI 0.2 to 12.8). Objective burden was not related to any health indicator.
Conclusions Subjective burden and lack of positive aspects of caregiving were associated with poorer physical and mental health. Caregiver health may be promoted through the strengthening of psychological and psychosocial resources.
This rapid literature review was commissioned by NSW Family & Community Services on behalf of the NSW Carers Advisory Council. The review aims to contribute to the evidence to help the Council to better understand the social and emotional health and wellbeing of the carer population and the specific issues and their impact in the carer population. Carers provide ongoing unpaid support to people who need it because of their disability, chronic illness, mental ill-health, dementia or frail age.The primary focus of this review is on evaluations of interventions or programs to support the social and emotional wellbeing of carers. The review also describes the key issues identified in the literature and what is known about the social and emotional health and wellbeing in the carer population. As this is a rapid literature review, it focuses on key issues, themes and solutions identified and may not be comprehensive or exhaustive
Objective: Stroke does not only affect the physical state of patients but also the emotional state of their relatives, most effectively their caregivers. The study aims to examine the mood of caregivers experienced with care for patients with stroke who are highly dependent on the assistance and also to establish the relationship between the emotional state of caregivers and the severity of disability of the patients.
Methods: This study contained a total of 76 patients with sufficient cognitive functions and severe physical disabilities with hemiplegia caused by a cerebrovascular accident and their caregivers and 94 controls. The functional state of patients was assessed by the Barthel Index (BI). Furthermore, emotional state of the caregivers was assessed by the Hospital Anxiety and Depression Scale (HADS) and their life quality was assessed by the SF36 Health Survey.
Results: The mean anxiety (9.73 ± 4.88) and depression rates (9.81 ± 5.05) in the caregivers were significantly higher than those in controls (p<0.001, respectively). Significant impairments were observed in both their mental and physical health. Regression analysis also showed a significant negative correlation between the BI scores and the HADS scores.
Conclusion: Caregivers had an impaired emotional state and the level of their anxiety was associated with the severity of functional disability of the patients. Therefore, the support provided to the caregiver might be influential on the functional recovery of the patients.
Caregivers of people with dementia (PwD) face burden, feelings of loneliness, and social isolation. Previous studies have shown promising effects of online e-health interventions. Using social media may facilitate support for dementia caregiver networks. In an iterative step-wise approach, a social support tool entitled "Inlife" was developed. This paper describes the design of a study evaluating the effects of Inlife and its process characteristics. Methods: A mixed-method, randomised controlled trial with 122 caregivers of PwD will be conducted. Participants will be assigned to either the Inlife social support intervention or a waiting-list control group. After 16 weeks, the control group will obtain access to the Inlife environment. Data will be collected at baseline (T0) and at 8-week (T1), 16-week (T2) and 42-week follow up (T3). The 16-week follow-up assessment (T2) is the primary endpoint to evaluate the results on the primary and secondary outcomes, measured by self-reported questionnaires. The primary outcomes include feelings of caregiver competence and perceived social support. The secondary outcomes include received support, feelings of loneliness, psychological complaints (e.g., anxiety, stress), and quality of life. A process evaluation, including semi-structured interviews, will be conducted to examine the internal and external validity of the intervention. Discussion: Using a mixed-method design, our study will provide valuable insights into the usability, effectiveness, and factors related to implementation of the Inlife intervention. Our study results will indicate whether Inlife could be a valuable social support resource in future routine dementia care. Trial registration: Dutch trial register, NTR6131. Registered on 20 October 2016.
Background: Modern therapeutics and health care improvements prolong stroke patients’ survival however, the degree of disability remains high. Stroke survivors often require caregivers, particularly in the first year after the onset of the stroke. Longitudinal assessment of and factors associated with caregiver burden (CGB) among caregivers of stroke patients has been scarcely discussed. This study aimed to define the changes in CGB in the first year of caregiving among the caregivers of stroke patients and to identify associated factors. Methods: A prospective, multi-centered observational study was conducted in nine public hospitals in Mongolia. We used the Montgomery CGB Scale for assessing CGB, and repeated the assessment after 1 year. Stroke patient characteristics were included in the analyses. Multinomial logistic regressions were conducted to analyze changes in CGB. Results: A paired t-test analysis revealed that demand burden increased (from 12.61 to 11.50, p = 0.034), whereas stress burden decreased (from 10.69 to 11.60, p = 0.016). Although objective burden decreased, the difference was not significant. Factors associated with these changes in CGB were the caregiver’s marital status, the caregiver’s relationship with the patient, financial difficulties, and the patient’s sex and dependency. Discussion: The information on factors predicting changes in CGB in the first year of caregiving provided in this study suggests that social or financial support can assist in reducing CGB among the caregivers of post-stroke patients.
Aim: The aim of this study was to evaluate the effect of spouses' involvement in older patients' care trajectories, using case management as intervention in total hip replacement through fast‐track programmes.
Background: Patients need their spouses to be involved in their fast‐track programmes and this involvement is often associated with improvements in patient outcomes. However, the effect of spouses' involvement in older patients' fast‐track programmes has not yet been investigated.
Design: A two‐group quasi‐experimental design with pre‐test and repeated post‐test measures was conducted in an orthopaedic ward of a Danish Regional Hospital from February 2014–June 2015. Spouse–patient dyads were initially recruited for the control group (n = 14), receiving usual care; dyads for the intervention group (n = 15) were recruited afterwards, receiving case management intervention elements before, during and after admission.
Methods: Face‐to‐face interviews on questionnaires were conducted with spouses and patients at baseline, 2 weeks and 3 months after discharge, measuring spouses' caregiver satisfaction, difficulties and level of anxiety and patients' functional and nutritional status, pain and level of depression.
Results: The results showed that there were no differences between the groups with regard to any of the outcome measures. However, statistically significant improvements were found in the patient groups on functional status, pain and depression and in the groups of spouses on caregiver satisfaction.
Conclusion: The case management intervention seemed to have an effect in patient and spousal groups; however, this improvement could also have been caused by the effect of fast‐track treatment.
Purpose: Informal caregivers (ICs) provide care and improve the quality of life of patients with malignant brain tumor. We analyze the impact of their involvement on themselves from a triple perspective.
Methods: Home-dwelling patients with primary malignant brain tumor underwent a medical examination. ICs burden was evaluated by a self-administered postal questionnaire. Objective burden (Informal Care Time, ICT), subjective burden (Zarit Burden Inventory, ZBI), and financial burden (valuation of lost earnings using the Replacement and Opportunity Cost Methods, RCM, OCM) were evaluated.
Results: ICs (N = 84) were principally women (87 %) and spouses (64 %), of mean age 55 years, who assisted patients of mean age 53 years and with a mean KPS score of 61 (range = 30–90, med = 60). Subjective burden was moderate (mean ZBI = 30). Objective burden was high (mean ICT = 11.7 h/day), mostly consisting of supervision time. Higher subjective and objective burden were associated with poorer functional status (KPS) but not with a higher level of cognitive disorders in multivariate analyses. Other independent associated factors were bladder dysfunction and co-residency for objective burden and working and a poor social network for subjective burden. The 56 working ICs made work arrangements (75 %) that impacted their wages (36 %) and careers (30 %). Financial burden due to uncompensated caregiving hours for Activities of Daily Living had a mean monetary value from Є677(RCM) to Є1683(OCM) per month (i.e., ranging from Є8124 to Є20196 per year).
Conclusions: IC burden is multidimensional. Greater provision of formal care, more IC support programs, and economic interventions targeting IC employment and finances are needed.
Objective: Every year, millions of Americans become informal caregivers to loved ones admitted to Neuroscience Intensive Care Units (Neuro-ICU), and face challenges to Quality of Life (QoL). This study sought to identify associations between resiliency, distress, and caregiver QoL at time of Neuro-ICU admission.; Methods: Informal caregivers (N = 79, Mage = 53, 64% female) of Neuro-ICU patients were recruited and completed self-report questionnaires during the hospitalization. We used hierarchical regression to test relative contributions of caregiver mindfulness, perceived coping abilities, and preparedness for caregiving to caregiver QoL, above-and-beyond non-modifiable patient and caregiver factors (e.g., gender) and caregiver psychological distress (i.e., anxiety, depression, history of mental health conditions).; Results: Preparedness for caregiving was uniquely and positively associated with Physical Health QoL (sr2 = 0.07, p = 0.001), Social QoL (sr2 = 0.05, p = 0.021), and Environmental QoL (sr2 = 0.14, p < 0.001), even after accounting for psychological distress. Mindfulness was uniquely and positively associated with Physical Health QoL (sr2 = 0.12, p < 0.001) and Psychological QoL (sr2 = 0.07, p = 0.004), above-and-beyond variance accounted for by psychological distress.; Conclusions: Mindfulness and preparedness for caregiving emerged as consistent, unique resiliency factors associated with greater caregiver QoL across QoL dimensions. Results highlight the importance of resiliency factors in QoL among Neuro-ICU caregivers and the need for early interventions to support resiliency.
Purpose: This study evaluated the humanistic burden on caregivers of patients with advanced non-small cell lung cancer (aNSCLC) as the disease progresses.; Methods: Data were drawn from a cross-sectional study of patients with aNSCLC and their caregivers conducted in France, Germany, and Italy between 2015 and 2016. Data were collected by medical chart review and patient and caregiver questionnaires. The EuroQol five-dimension three-level (EQ-5D-3L) was used to evaluate patient and caregiver health status. Caregivers also completed the Work Productivity and Activity Impairment (WPAI) questionnaire and Zarit Burden Interview (ZBI).; Results: The population for the analysis consisted of 427 caregivers (mean age 53.5 years; 72.6% female; 54.9% spouse; 36.2% in full-time employment) and 427 matched patients (mean age 66.2 years; 68.6% male). Most (69.5%) patients were receiving first-line therapy for advanced disease. Patients' caregivers provided a mean of 29.5 h of support per week. Significant differences in EQ-5D-3L scores were observed between caregivers of patients receiving first and later lines of therapy in France (0.87 vs. 0.78; p = 0.0055). Among employed caregivers, overall work impairment was considerable and ranged from 21.1% in Germany to 30.4% in France and 29.7% in Italy. Caregivers of patients receiving later lines of therapy in France rated their own health status as significantly worse than did those caring for patients receiving first-line therapy (82.7 vs. 72.9; p = 0.0039).; Conclusions: Informal caregivers provided the majority of support for patients with advanced NSCLC and their caregiving activities impose a significant humanistic burden.
The onset of depressive symptoms is common in home care clients and their caregivers. Understanding the experience of the informal caregiver can assist clinicians in providing services to maximize the well-being of both the client and their caregivers. The objectives of this article are to examine risk factors for the development of depressive symptoms. A longitudinal analysis design was completed for clients with 2+ assessments. The development of depressive symptoms was defined as a Depression Rating Scale score of 3+ on re-assessment. The results-overall, 10.7% of clients experienced new depressive symptoms and clients with a caregiver who was feeling distressed, angry, or depressed were 45% more likely to develop symptoms.
Caring for someone with a mental illness is associated with high levels of burden and psychological distress. Understanding these factors could be important to prevent the development of physical and mental health problems in carers. The purpose of the present study was to determine the contribution of coping styles and social support in predicting the psychological distress reported by informal carers (IC) of individuals with major depression or bipolar disorder. IC (n = 72) of adults with a diagnosed depressive illness were recruited from mental health organizations within the community setting. Carers completed the General Health Questionnaire, Brief COPE, and Social Support Questionnaire. Multiple linear regression analysis revealed that 63% of the variance in psychological distress could be accounted for by adaptive and maladaptive coping styles and perceived quantity and satisfaction with social support. Satisfaction with social support (β = -0.508, P < 0.001) and maladaptive coping (β = 0.369; P < 0.001) were significant predictors of psychological distress. These findings suggest that interventions should consider coping styles, specifically the interaction between maladaptive behaviours and enhancement of quality of support, to assist carers to manage psychological distress, especially earlier in the caring role.
This prospective study investigates informal care networks and their impact on hospice outcomes. Primary caregivers (N = 47) were the main source of data from 2 time points: within a week of enrollment in hospice and bereavement. Data were also collected from 42 secondary caregivers. Intraclass correlation coefficients (ICCs) determined correspondence between primary and secondary caregivers regarding informal care network size. Correlations were used to test associations between variables. Nonparametric paired sample tests were used to analyze change in anger and guilt. The ICC found poor correspondence (-0.13) between primary and secondary caregivers' network descriptions. Correlational analyses found a strong/moderate negative association between quality of dying (QOD) and grief ( r = -0.605, P < .05). Study participants reported increased anger (0.4, P < .05, range 1-5) and guilt (0.4, P < .05, range 1-5), particularly among caregivers with high levels of support. Findings suggest that improving QOD may facilitate postdeath coping for caregivers.
Objective: Examining the causal relationship between employment and informal caring to date has been impeded in countries like Ireland where there is a lack of suitable panel data and/or variables for instrument construction. This paper employs propensity score matching to control for non-random selection into treatment and control groups which controls for differences in employment outcomes between carers and non-carers in Ireland using data from Quarterly National Household Survey 2009 Quarter 3. Earlier papers focus on using regression techniques which may lead to biased estimates.; Results: Results suggest that differences exist between carers and non-carers with respect to their employment status in Ireland. Overall the results suggest that the effects are more significant for those providing greater hours of informal care per week than those providing fewer hours of care per week. The effects estimated in this paper are likely to be more precise as failing to account for potential biases in the relationship are likely to underestimate the true effect of caring on employment outcomes. We find that propensity score matching provides an alternative method of examining the relationship when suitable panel data and/or variables for instrument construction are not available.
Falls are a common cause of morbidity and mortality in older adults. While research has explored the relationship between older care recipient falls and caregiver health, there has been little investigation of the relationship between caregiving tasks and falls in older caregivers. This study assessed associations between falls and caregiving frequency and type of caregiving tasks among informal older caregivers. Data from the Canadian Community Health Survey on Healthy Aging (Public Use Microdata File 2008-2009) (n = 2,934) were examined, using descriptive and logistic regression analyses. Higher frequency of caregiving was positively associated with falls, although those who performed household chores were less likely to report falling in the past year. Results suggest there may be an association between factors related to caregiving and falls in older caregivers. More research using longitudinal and experimental data is needed to better understand the relationship between caregiving tasks and falls in older caregivers.
Background: Web-based peer support interventions have shown promise in reducing social isolation and social support deficits among informal caregivers, but little research has examined how caregivers use and perceive these interventions.; Objective: In this study, we examined utilization and perceptions of a Web-based social support intervention for informal caregivers of wounded, ill, and injured United States military service members and veterans.; Methods: This was a mixed-methods study that used quantitative survey data and qualitative data from focus groups and interviews with informal caregivers enrolled in a Web-based peer support intervention to explore their use and perceptions of the intervention. The intervention was delivered via a website that featured interest groups organized around specific topics, webinars, webchats, and messaging functionality and was moderated by professionally trained peers. This study occurred in the context of a quasi-experimental outcome evaluation of the intervention, where intervention participants were compared with a group of military caregivers who were not enrolled in the intervention.; Results: Survey findings indicated that caregivers used the website infrequently, with 60.7% (128/211) visiting the website once a month or less, and passively, with a minority (32/144, 22.2%) of users (ie, those who had visited the website at least once during the past 3 months, N=144) posting comments or links to the network. Nonetheless, most users (121/144, 84.0%) endorsed moderate or greater satisfaction with the website on the survey, and focus group and interview participants reported benefiting sufficiently from passive use of the website (eg, reading posts). Quantitative and qualitative findings suggested that users viewed the website primarily as a source of informational support. Among 63.2% (91/144) of users who completed the survey, the most commonly reported network-related activity was obtaining information from the network's resource library, and focus group and interview participants viewed the network primarily as an informational resource. Focus group and interview participants expressed an unmet need for emotional support and the desire for a more personal touch in the forms of more active engagement with other caregivers in the network and the creation of local, in-person support groups for caregivers.; Conclusions: These findings suggest that Web-based peer support interventions may lend themselves better to the provision of informational (vs emotional) support and may need to be supplemented by in-person peer support groups to better meet caregivers' needs for emotional support.
Background: In the MEETINGDEM project, the Meeting Centers Support Program (MCSP) was adaptively implemented and evaluated in three European countries: Italy, Poland, and the United Kingdom. The aim of this study was to investigate overall and country-specific facilitators and barriers to the implementation of MCSP in these European countries.; Methods: A qualitative multiple case study design was used. Based on the theoretical model of adaptive implementation, a checklist was composed of potential facilitators and barriers to the implementation of MCSP. This checklist was administered among stakeholders involved in the implementation of MCSP to trace the experienced facilitators and barriers. Twenty-eight checklists were completed.; Results: Main similarities between countries were related to the presence of suitable staff, management, and a project manager, and the fact that the MCSP is attuned to needs and wishes of people with dementia and informal caregivers. Main differences between countries were related to: communication with potential referrers, setting up an inter-organizational collaboration network, receiving support of national organizations, having clear discharge criteria for the MCSP and continuous PR in the region.; Conclusion: The results of this study provide insight into generic and country specific factors that can influence the implementation of MCSP in different European countries. This study informs further implementation and dissemination of MCSP in Europe and may also serve as an example for the dissemination and implementation of other effective psychosocial support interventions for people with dementia and their informal caregivers across and beyond Europe.
Background: Informal caregivers of people with motor neurone disease (MND) take on an extensive role. Caregivers are at increased risk of experiencing psychological distress and burden, yet, there is a lack of intervention programmes to support them.; Aim: The aim of this study was to investigate the feasibility and acceptability of a therapeutic group intervention promoting self-care, problem-solving and mindfulness to informal caregivers of people with MND.; Design: Pilot study that utilised a one-arm pre- and post-design. Acceptability of the intervention was assessed 2 weeks post intervention with a questionnaire designed specifically for this study. Feasibility was assessed with consent, adherence and reasons for non-participation, refusal and attrition. Participants completed baseline and follow-up (6-week post intervention) questionnaires for psychological morbidity, burden, problem-solving, mindfulness and preparedness. Settings/participants: Caregivers of people with a diagnosis of MND within the past 12 months who were 18 years or older; who could speak, read and write in English and who were attending a progressive neurological diseases clinic were eligible.; Results: A total of 13 caregivers participated in one of three group intervention sessions which were focused on self-care, problem-solving and mindfulness. The intervention appeared to be feasible and acceptable. All participants stated that they would recommend the intervention to others. The group format appeared to be highly valued. There was no significant change in measures between pre-intervention and 6 weeks post intervention.; Conclusion: This pilot serves as an initial step for examining interventions for MND caregivers, with the hope of identifying effective, efficient and sustainable strategies to best support this group.
Background: Caregivers of people with dementia are likely to have psychological distress that sometimes results in mental health problems, such as depression. The objective of this study was to examine some predictive factors that are thought to be associated with psychological distress of caregivers of people with dementia in Japan.; Methods: Design: A cross-sectional study.; Sample: As part of a study to estimate the cost of dementia in Japan, 1,437 people with dementia-caregiver dyads were enrolled in the current informal care time study. The measurements in the study included were the basic characteristics of the caregivers and the people with dementia, and the informal care time during a week.; Analysis: Factors that predict caregivers' psychological distress, which was measured by Kessler's Psychological Distress scale (K6) score, were evaluated using univariate and multivariate regression analyses.; Results: Approximately 69% of the caregivers recorded a K6 score higher than 4, while 18% scored higher than 12. According to the results of the logistic regression analysis (cut-off 4/5), the K6 score was associated with mental and comorbid diseases of people with dementia, informal care time, its lower number of caregivers, and the level of nursing care. According to the results of logistic regression analysis (cut-off 12/13), the K6 score was associated with mental symptoms and comorbid disease of people with dementia, sex of caregivers, informal care time, and its lower number of caregivers.; Conclusion: Our findings indicated that the psychological distress of the caregivers is quite high and that informal care time and behavioral and psychological symptoms of dementia are associated with it. These results corroborate with previous findings.
Objective: We aimed to analyze the relationship between optimism and quality of life (QoL) among informal caregivers of patients with dementia (PWD).; Design: In this cross-sectional study, a hierarchical multiple linear regression analysis was used to determine the association between optimism and caregiver's QoL after controlling the effect of different covariates, including burden.; Participants: A sample of 130 PWD and their informal caregivers underwent a comprehensive protocol of assessment.; Measurements: Caregivers completed the Battery of Generalized Expectancies of Control Scales, the Zarit Burden Interview, and the World Health Organization Quality of Life-Brief as measure of QoL. Optimism was estimated based on the combination of three expectancies of control, namely, self-efficacy, contingency, and success.; Results: QoL correlated positively with optimism and negatively with burden. Optimism predicted each dimension of QoL, even after controlling for the effect of sociodemographic, care-recipients' clinical covariates, and burden in all models.; Conclusion: Optimism consistently predicted well-being and QoL in informal caregivers of PWD.
Research on ageing in Nigeria has shown that informal care places economic and psychological strain on the caregivers of the elderly persons. However, objective method of assessment of the burden of care for the elderly among caregivers is lacking. This study was aimed at validating the 12-item Zarit Burden Interview (ZBI) among caregivers of elderly persons in Nigeria in correlation with the Katz Index of Independence in Activities of Daily Living (Katz-ADL), the General Health Questionnaire (GHQ-12) and the Modified Conflicts Tactics Scale for Elder Abuse (MCTS). Eighty primary caregivers of community-dwelling elders were selected using a two-stage cluster sampling from two communities. Principal component analysis with varimax rotation was used to determine the factor structure of the ZBI. Construct validity was assessed using Spearman's correlations between the ZBI, the GHQ-12, Katz ADL and MCTS. Internal consistency and instrument reliability were examined with the Cronbach's alpha split-half correlation. Three factors with eigenvalues greater than 1.0 were extracted on the exploratory factor analysis comprising all 12 items accounting for 68.0% of the total item variance. The reliability analysis gave a Cronbach's α of 0.90 and a split-half correlation coefficient of 0.84. Spearman's correlation (rs) showed good correlation between the ZBI scores and GHQ-12 (rs=0.44, p<0.001), MCTS (rs=0.43, p<0.001) and Katz ADL (rs= -0.50, p <0.001). The 12-item ZBI is a valid and reliable tool for assessing burden in informal settings among caregivers of elderly persons. The tool can be used to assess burden of care among caregivers of elderly persons in community settings.
Objective The aim of the present study was to compare the health status of South Australians with recent experience of caring for an adult with chronic disease with non-carers drawn from the same population. Methods Data were collected via the South Australian Health Omnibus, an annual population-based, cross-sectional survey. Respondents were asked whether they had provided care or support in the last 5 years to someone with cancer, heart disease, respiratory disease, mental illness, neurological disease or dementia. Health status was measured using the Short Form-12 version 1 (SF-12) physical and mental component scale summary scores (PCS and MCS respectively), with poor health status defined as ≥0.5 standard deviation below the normative mean. Logistic regression explored characteristics associated with poor health status.Results Of 3033 respondents analysed, 987 (32.5%) reported caring experience. Poor PCS and MCS were associated with carer status, lower-than-degree-level education, employment status other than employed and annual household income less than A$60000. Being Australian born was a protective factor for PCS, whereas factors protective for MCS were being married or in a de facto relationship and age ≥65 years.Conclusions Providing care or support in the last 5 years is independently associated with poorer health status, but not with the magnitude found in studies of current carers. Future research should explore health status recovery after completion of the caring role, and investigate whether relationships between health and socioeconomic status differ for carers versus non-carers. What is known about the topic? Population-based survey studies in Australia and overseas have consistently found that informal carers have worse health status than non-carers.What does this paper add? Including recent as well as current carers in a population-based sample was associated with less effect on health status compared with studies focused on current carers only. This finding is consistent with the possibility that health status recovers during the 5 years after caring.What are the implications for practitioners? Support for Australian carers is warranted to ensure their continuing contributions to society and return to productivity after their caring role is completed.
Longitudinal studies of caregiver burden when caring for persons with dementia living at home are sparse. The aim of the study was to identify factors associated with caregiver burden and predicting increased burden related to caregivers, persons with dementia and formal care. Data were collected through interviews with 1223 caregivers in eight European countries. Bivariate and multivariate regression analyses were performed. Factors associated with caregiver burden included extensive informal care provision, decreased well-being and reduced quality of life for the caregiver and reduced cognition, decreased quality of life, severe neuropsychiatric symptoms and depression in the person with dementia and caregivers' negative experience of quality of care. Factors predicting an increased burden were diminished caregiver well-being, severe neuropsychiatric symptoms of the person with dementia and caregivers' negative perception of quality of care. The knowledge gained in this study may be useful in developing more adequate service systems and interventions to improve dementia care.
Costs of informal care account for a significant component of total societal costs for many chronic and disabling illnesses. Yet, costs associated with the provision of informal care is seldom included in economic evaluations of new health technologies, increasing the risk of suboptimal decisions on the allocation of resources from the perspective of society. Our objective was to propose a standardized questionnaire for the measurement, valuation, and estimation of caregiver indirect (productivity) and informal care costs as separate mutually exclusive subsets of total costs in cost-of-illness studies and as an input to economic evaluations from the societal perspective. We developed a questionnaire for data collection and step-by-step analysis procedures for resource valuation and cost estimation. Data concerning absenteeism from work and time devoted to informal care were recorded using the recall method. Indirect (productivity) and paid informal care costs were valued and estimated according to the human-capital approach as the loss of production. Unpaid informal care costs were valued and estimated as the loss of leisure time quantified using the opportunity cost and proxy good method. The new questionnaire, titled the Caregiver Indirect and Informal Care Cost Assessment Questionnaire, contains 13 questions regarding caregiver current and previous work status, productivity, and the provision of informal care (stratified by time devoted to household activities, personal care, practical support, and emotional support). The proposed questionnaire should be helpful to inform the design, implementation, and execution of future cost-of-illness studies and economic evaluations from the perspective of society.
Objectives: Informal caregiving is associated with poorer mental and physical health. Little research has yet focused on objectively measured health risk factors, such as metabolic markers. The aim of this study was to investigate whether informal caregiving was associated with markers of metabolism in a large, representative UK longitudinal study. We also investigated whether more intensive caregiving, as indicated by more caregiving hours, was associated with a less favourable metabolic profile.; Study Design/outcome Measures: Using data on 9408 participants aged 16+ from the UK Household Longitudinal Study, we explored the relationship between caregiving and metabolic markers (blood pressure, total and high density lipoprotein cholesterol, glycated haemoglobin and triglycerides). We additionally investigated the importance of caregiving intensity (number of hours spent caregiving per week). Associations between caregiving/caregiving intensity and metabolic markers were tested using gender-stratified linear regression models adjusted for age, household income, education, social class, chronic illness, number of dependent children in the household, body mass index and partnership status.; Results: Men who were informal caregivers had higher total cholesterol levels than non-caregivers (3.25% higher, 95% CI: 0.07, 6.53). Women caregivers also had higher total cholesterol levels and women providing intensive care (over 20 h per week) had higher triglyceride levels (19.91% higher, 95% CI: 7.22, 34.10) and lower levels of high density lipoprotein cholesterol (8.46% lower, 95% CI: 14.51, 1.99); however, associations for women were attenuated in our final models.; Conclusions: Informal caregiving is associated with less favourable lipid profiles. This may be one mechanism through which informal caregiving is associated with increased disease risk. The health of informal caregivers should be a priority for public health.
Many informal caregivers of persons with dementia suffer adverse health consequences. Although established psychoeducation programs are known to benefit caregivers, attending in-person programs is challenging for them. To address this challenge, the Savvy Caregiver Program, an evidence-based psychoeducation program with demonstrated effectiveness for caregiving and disease-related outcomes, was transformed into an on-line program, Tele-Savvy. This article describes the rationale for and design of a prospective longitudinal randomized controlled trial (targeted N = 215), currently underway. The trial aims to establish Tele-Savvy's efficacy in (i) reducing the negative effects of caregiving on caregivers; (ii) promoting care recipients' quality of life; (iii) improving caregiver mastery; and to explore (iv) Tele-Savvy's efficacy among caregivers of different races/ethnicities. The mediating role of mastery will be assessed. Participants are randomized to the active condition (immediate Tele-Savvy participation), attention control, or usual care. Participants in the two latter conditions will complete Tele-Savvy 6 months post-baseline. Multilevel mixed effects models will be used to examine changes in outcomes and to model group by time (months since baseline) interactions. The exploratory aim will be addressed using analysis of covariance and qualitative analysis. This trial's results may be used by healthcare and community organizations to implement Tele-Savvy in dementia care, increasing caregivers' access to this evidence-based intervention.
Background: Case fatality after total anterior circulation stroke is high. Our objective was to describe the experiences and needs of patients and caregivers, and to explore whether, and how, palliative care should be integrated into stroke care.; Methods: From 3 stroke services in Scotland, we recruited a purposive sample of people with total anterior circulation stroke, and conducted serial, qualitative interviews with them and their informal and professional caregivers at 6 weeks, 6 months and 1 year. Interviews were transcribed for thematic and narrative analysis. The Palliative Care Outcome Scale, EuroQol-5D-5L and Caregiver Strain Index questionnaires were completed after interviews. We also conducted a data linkage study of all patients with anterior circulation stroke admitted to the 3 services over 6 months, which included case fatality, place of death and readmissions.; Results: Data linkage (n = 219) showed that 57% of patients with total anterior circulation stroke died within 6 months. The questionnaires recorded that the patients experienced immediate and persistent emotional distress and poor quality of life. We conducted 99 interviews with 34 patients and their informal and professional careers. We identified several major themes. Patients and caregivers faced death or a life not worth living. Those who survived felt grief for a former life. Professionals focused on physical rehabilitation rather than preparation for death or limited recovery. Future planning was challenging. "Palliative care" had connotations of treatment withdrawal and imminent death.; Interpretation: Major stroke brings likelihood of death but little preparation. Realistic planning with patients and informal caregivers should be offered, raising the possibility of death or survival with disability. Practising the principles of palliative care is needed, but the term "palliative care" should be avoided or reframed.
Background: More than 80% of bedridden patients develop bedsores in home care settings. Training of informal caregivers can significantly affect the quality of care to these patients.; Objective: The objective of this study is to compare the effectiveness of two caregiver training strategies on prevention of bedsores among bedridden patients.; Methods: The study was carried out in Chandigarh. The study center was at PGIMER, Chandigarh. Seventy-eight bedridden patients being taken care in their homes were identified. These were randomly allocated into two groups. Group A received Prevention Package I, i.e., self-instruction Manual (SIM), training, and counseling. Group B received Prevention Package 2, i.e., only SIM. All these patients were followed up periodically for 1 year. During each follow-up, patients were observed for bedsore development. Braden scale was used to assess the risk factors of bedsores. Katz scale was used to evaluate the level of functional dependence of patients. Descriptive statistics was used to analyze the data.; Results: The percentage reduction of number of patients at risk of bedsore development as per various domains of Braden Scale was more in Group A as compared to Group B on each successive visit. There was 100% improvement in mobility level in the patients who were totally dependent in both the groups. However, in moderately dependant patients, the improvement in mobility level was more (87%) in Group A as compared to Group B (75%). All the caregivers complied fully with instructions postintervention.; Conclusion: Training of caregivers for the prevention of bedsores among the bedridden patients was effective in improving the practices of the caregivers and also in reducing the risk factors of bedsores. One-to-one training with SIM distribution yielded better results than the use of only SIM.
Background: Many psychosocial and behavioral interventions have been developed for informal dementia caregivers. Because existing meta-analyses only focused on a limited number of interventions and outcomes, how effective these interventions are overall and which interventions components are associated with larger effects has yet to be explored.; Objective: To provide a comprehensive meta-analysis of the effectiveness of psychosocial and behavioral interventions on burden, depression, anxiety, quality of life, stress, and sense of competence in informal dementia caregivers. In addition, we examined if interventions which utilized more sessions and/or were delivered personally (face-to-face) had larger effect sizes. In exploratory meta-regressions, we examined seven additional moderators.; Methods: The protocol was registered with PROSPERO, number CRD42017062555. We systematically searched the literature to identify controlled trials assessing the effect of psychosocial and behavioral interventions on the six outcome measures, for informal dementia caregivers. We performed six random effects meta-analyses, to assess the pooled effect sizes of the interventions. In addition, we performed separate meta-regressions, for each outcome, for each moderator.; Results: The sample consisted of 60 studies. For all outcomes except anxiety, the pooled effects were small and in favor of the intervention group. No moderator was found to systematically predict these effects. There were no indications for publication bias or selection bias based on significance.; Conclusion: Overall, the interventions yield significant (small) effects, independent of intervention characteristics. Future research should explore options to enhance the effectiveness of interventions aimed at assisting informal caregivers.
Objective: To assess the feasibility of conducting a randomized controlled trial of an instructional and educational stroke DVD and determine the feasibility and preliminary efficacy of this intervention in a multinational context.; Design: Non-funded, pilot randomized controlled trial of intervention versus usual care.; Setting: International, multicentre, community-based.; Participants: Community-living adults up to three years post stroke with moderate to severe disability and their nominated informal caregivers.; Interventions: Intervention patients viewed and practised rehabilitation techniques demonstrated in the DVD over six weeks.; Main Measures: Trial feasibility by number of active recruitment sites, recruitment efficiency, randomization and follow-up. Intervention feasibility by patient and caregiver impressions. Preliminary efficacy by the quality of life - 5-level EuroQol-5D (EQ-5D) health status measure, General Health Questionnaire and Centre for Epidemiological Studies-Depression at two months.; Results: In total, 14 recruitment sites were established across eight countries. Recruitment was achieved at nine (64%) sites. Over 16 months, 66 participants were recruited (mean (SD) age = 63.5 (12.47) years) and randomized to intervention ( n = 34) and control ( n = 32) groups. In total, 54 (82%) completed a follow-up assessment. Patient and/or caregiver comments about the benefits and barriers to accessing the intervention were mixed. There were no significant between-group differences in outcomes at two months ( P > 0.05).; Conclusion: Conducting a multinational trial of a stroke DVD requires full funding. The intervention was acceptable to some patients and their caregivers, yet a generalized education approach did not fully meet their needs and/or expectations. A more individualized method may be required to meet peoples' changing needs during stroke recovery.
Background: The Midhurst Macmillan Specialist Palliative Care at Home Service was founded in 2006 to improve community-based palliative care provision. Principal components include; early referral; home-based clinical interventions; close partnership working; and flexible teamwork. Following a successful introduction, the model was implemented in six further sites across England. This article reports a mixed methods evaluation of the implementation across these 'Innovation Centres'. The evaluation aimed to assess the process and impact on staff, patients and carers of providing Macmillan Specialist Care at Home services across the six sites.; Methods: The study was set within a Realist Evaluation framework and used a longitudinal, mixed methods research design. Data collection over 15 months (2014-2016) included: Quantitative outcome measures - Palliative Performance Scale [PPS] and Palliative Prognostic Index [PPI] (n = 2711); Integrated Palliative Outcome Scales [IPOS] (n = 1157); Carers Support Needs Assessment Tool [CSNAT] (n = 241); Views of Informal Carers -Evaluation of Services [VOICES-SF] (n = 102); a custom-designed Service Data Tool [SDT] that gathered prospective data from each site (n = 88). Qualitative data methods included: focus groups with project team and staff (n = 32 groups with n = 190 participants), and, volunteers (n = 6 groups with n = 32 participants). Quantitative data were analysed using SPPS Vs. 21 and qualitative data was examined via thematic analysis.; Results: Comparison of findings across the six sites revealed the impact of their unique configurations on outcomes, compounded by variations in stage and mode of implementation. PPS, PPI and IPOS data revealed disparity in early referral criteria, complicated by contrasting interpretations of palliative care. The qualitative analysis, CSNAT and VOICES-SF data confirmed the value of the Macmillan model of care but uptake of specialist home-based clinical interventions was limited. The Macmillan brand engendered patient and carer confidence, bringing added value to existing services. Significant findings included better co-ordination of palliative care through project management and a single referral point and multi-disciplinary teamwork including leadership from consultants in palliative medicine, the role of health care assistants in rapid referral, and volunteer support.; Conclusions: Macmillan Specialist Care at Home increases patient choice about place of death and enhances the quality of end of life experience. Clarification of key components is advocated to aid consistency of implementation across different sites and support future evaluative work.
Objective: To translate, culturally adapt, and psychometrically evaluate the Spanish version of the "Scale for End-of Life Caregiving Appraisal" (SEOLCAS).; Method: Observational cross-sectional study. Convenience sample of 201 informal end-of-life caregivers recruited in a southern Spanish hospital. The reliability of the questionnaire was assessed through its internal consistency (Cronbach's α) and temporal stability (Pearson's correlation coefficient [r] between test-retest). The content validity index of the items and the scale was calculated. Criterion validity was explored through performing a linear regression analysis to evaluate the SEOLCAS' predictive validity. Exploratory factor analysis was used to examine its construct validity.; Results: The SEOLCAS' reliability was very high (Cronbach's α = 0.92). Its content validity was excellent (all items' content validity index = 0.8-1; scale's validity index = 0.88). Evidence of the SEOLCAS' criterion validity showed that the participants' scores on the SEOLCAS explained approximately 79.3% of the between-subject variation of their results on the Zarit Burden Interview. Exploratory factor analysis provided evidence of the SEOLCAS' construct validity. This analysis revealed that two factors ("internal contingencies" and "external contingencies") explained 53.77% of the total variance found and reflected the stoic Hispanic attitude toward adversity. Significance of resultsThe Spanish version of the SEOLCAS has shown to be an easily applicable, valid, reliable, and culturally appropriate tool to measure the impact of end-of-life care provision on Hispanic informal caregivers. This tool offers healthcare professionals the opportunity to easily explore Hispanic informal end-of-life caregivers' experiences and discover the type of support they may need (instrumental or emotional) even when there are communicational and organizational constraints.
Background: Informal caregivers provide extended support to people with cancer but they receive little support from the health care system to assist them in their caring role. The aim of this single-blind, multi-centre, randomised controlled trial was to test the efficacy of a telephone outcall program to reduce caregiver burden and unmet needs, and improve psychological well-being among cancer caregivers, as well as evaluating the potential impact on patient outcomes.; Methods: Cancer patient/caregiver dyads (N = 216) were randomised to a telephone outcall program (n = 108) or attention control group (n = 108). The primary outcome was self-reported caregiver burden. Secondary endpoints included depressive symptoms, unmet needs, self-esteem, self-empowerment, and health literacy. Data were collected at baseline and at both 1 and 6 months post-intervention. An intention to treat analysis was performed.; Results: The intervention had no effect on the primary outcome (caregiver burden), but reduced the number of caregiver unmet needs (intervention group baseline, mean = 2.66, 95% confidence interval (CI) [1.91-3.54]; intervention group 1 month post intervention, mean = 0.85, 95%CI [0.42-1.44]; control group baseline, mean = 1.30 95%CI [0.80-1.94], control group 1 month post intervention, mean = 1.02 95%CI [0.52-1.69]; p = 0.023). For caregivers at risk for depression, the intervention had a significant effect on caregivers' confidence in having sufficient information to manage their health (p = 0.040). No effects were found for patients' depressive symptoms, unmet needs, self-empowerment, and other health literacy domains.; Conclusions: While caregiver burden was not reduced, the outcall program was effective in reducing unmet needs in caregivers. Provision of cancer information and support via a telephone service may represent a feasible approach to reducing unmet needs among cancer caregiver populations.; Trial Registration: ACTRN12613000731796 ; prospectively registered on 02/07/2013.;
Purpose: The study aims to analyze the incidence of 30-day mortality in elderly patients who underwent surgery for hip fractures and its associated factors.; Methods: A prospective multicentric study was performed. All patients aged ≥ 65 years, with fragility hip fractures, consecutively admitted in two Italian hospitals were included. Patients with periprosthetic or pathological fractures were excluded. Logistic regression was used to identify patient and patient care variables that independently influenced the 30-day mortality and receiver operating characteristic (ROC) curve analysis to assess their predictive capacity on the outcome.; Results: Of the patients, 728 met the inclusion criteria, of whom approximately 5% died within 30 days after admission. The 45.7% of the deceased patients died while hospitalized. Multivariate analysis showed that advancing age was the only independent predictor of 30-day mortality (OR = 1.084, 95% CI = 1.024-1.147), while a higher presence of informal caregivers was a protective factor (OR = 0.988, 95% CI = 0.979-0.997). The area under the ROC curve of the model was 0.723 (CI95% 0.676-0.770) for 30-day mortality in elderly hip fractures patients.; Conclusions: Patients with an advanced age need careful follow-up, especially within 30 days following operation for hip fracture; at the same time, the presence of informal caregivers at the patient's bedside should be promoted.
Aim: Caring for older adults with chronic illness is associated with enormous physical and psychological stress on the informal caregivers. This study assessed burden experienced by caregivers of older adults with chronic illness, explored coping strategies of caregivers in relation to identified chronic conditions and determined the influence of caregiver's burden, caregiver's characteristics and older adult's characteristics on their coping ability.; Method: This is a cross-sectional, correlational study, and data were collected among 325 caregivers of older adults living with chronic illness in Osun State, Nigeria, using a checklist, Katz IADL, Zarit Burden Interview and Brief Cope Scale. Data were analysed using descriptive and inferential statistics.; Findings: Results revealed that the age of the caregivers ranged between 19 and 70 years with a mean of 47.79 (±11.94). They were caring for older adults with heart diseases (47.7%), kidney diseases (8.0%), cancer (10.2%), gastrointestinal disorders (5.5%), stroke (18.5%), diabetes mellitus (10.2%) who had partial (60.9%) to total level of dependency (39.1%). Over 59% of caregivers experienced severe burden, which is associated with religion (p < 0.001). Coping strategies used include religion (7.37 ± 0.85), planning (6.70 ± 0.89), positive reframing (6.42 ± 1.01) and emotion-focused coping (29.97 ± 3.30), which was the most used coping domain. Caregiver's burden was a predictor of emotion-focused (β = -0.16), problem-focused (β = -0.15), dysfunctional (β = -0.14) and the total coping score (β = -0.48). In addition, religion predicted emotion-focused coping (β = 0.69).; Conclusion: This study concluded that caregiving activities impose a severe burden on the caregivers. Religion was the most used, and coping ability is predicted by burden and religion. Therefore, healthcare providers should consider interventions to promote the use of effective coping skills.
Background: In the UK, there are currently 800 000 people living with dementia. This number is expected to double in the next 20 years. Two-thirds of people with dementia live in the community supported by informal carers. Caring for a person with dementia has adverse effects on psychological, physical, social wellbeing and quality of life. The measurement of quality of life of carers of people with dementia is increasingly of interest to health and social care practitioners and commissioners, policymakers, and carers themselves. However, there is lack of consensus on the most suitable instrument(s) for undertaking this. Methods: A systematic review of the literature using COSMIN methodology. Searching of electronic databases (Medline, PsycINFO, CINAHL and Web of Science), reference list and citation searching of key papers was undertaken. COSMIN methodology was used to simultaneously extract data from and assess methodological quality of included studies, and make a recommendation for the instrument with the most high quality evidence for its measurement properties. Results: Ten instruments were suitable for inclusion in this review. The Carer well-being and support questionnaire (CWS) has the best quality evidence for the greatest number of measurement of properties. The Caregiver Well-Being Scale is also worthy of consideration. There is not presently a measure which could be recommended for use in economic evaluations, however the Impact of Alzheimer’s Disease on the Caregiver questionnaire (IADCQ) could potentially be used following further investigation of its measurement properties in a representative population. Conclusion: The CWS is the most appropriate instrument to recommend for the assessment of quality of life in informal carers of people with dementia at present. All instruments included in this review would benefit from more rigorous evaluation of their measurement properties.
Background: Informal caregivers of patients with Amyotrophic Lateral Sclerosis (ALS) or Progressive Muscular Atrophy (PMA) face stressful demands due to severe impairments and prospect of early death of the patients they care for. Caregivers often experience feelings of psychological distress and caregiver burden, but supportive interventions are lacking. The objective of this study is to investigate the effectiveness of a psychosocial support program aimed at enhancing feelings of control over caregiving tasks and reducing psychological distress. This support program is based on an existing program for adult partners of people with cancer and is adapted to meet the needs of ALS caregivers.; Methods: This study is a randomized controlled trial using a wait-list control design. One hundred and forty caregiver-patient dyads, recruited from a nationwide database and through the website of the Dutch ALS Center, will be either randomized to a support program or a wait-list control group. The blended intervention is based on Acceptance and Commitment Therapy and consists of 1 face-to-face contact, 6 online guided modules and 1 telephone contact. The intervention can be worked through in 8 weeks. The effectiveness and the participants' satisfaction with the intervention will be evaluated using a mixed method design. Caregivers and patients will be asked to fill in questionnaires on 4 occasions during the study: baseline, 3 months, 6 months and 9 months. The main study outcome is the psychological distress of the caregiver assessed with the Hospital Anxiety and Depression Scale. Secondary outcomes are caregiver burden, caregiver quality of life, quality of life of the patient and psychological distress of the patient. Group differences in primary and secondary outcomes at 6 months will be compared with linear mixed model analysis. In a subgroup of caregivers we will explore experiences with the support program through semi-structured interviews. Usage of the online modules will be logged.; Discussion: The study will provide insights into the effectiveness of a blended psychosocial support program on psychological distress of caregivers of patients with ALS or PMA, as well as into indirect relations with patients' wellbeing.; Trial Registration: Netherlands Trial Registry NTR5734 , registered 28 March 2016.
Dementia is one of the main causes of disability later in life. Interventions in support of patients with dementia aim at granting the highest level of independence in activities of daily living and at delivering the required facilities; formal and informal caregivers represent the interface between patients and health services. The aims of our study were to assess caregivers' perceived needs and to relate them to their own socio-cultural features and to patients' clinical characteristics. During three consecutive months, 50 caregivers of patients with dementia were interviewed about their needs in the assistance of subjects with dementia by means of three structured questionnaires (Caregiver Needs Assessment [CNA], Zarit Burden Inventory [ZBI], Neuropsychiatric Inventory-Questionnaire [NPI-Q]) and of two open-ended questions. Higher scores of CNA (suggestive of more needs) were associated with a major burden in caregiving and were related to a more severe behavioral and psychological profile of patients with dementia. ZBI was highly correlated with NPI distress score. Among caregivers, the children of patients reported more needs, particularly about information on disease and how to cope with it. CNA emerged as a complete and reliable instrument, with need for safety being the only item missing from the questionnaire and identified by means of the open-ended questions. Our results showed how the use of simple and brief instruments can increase the communication between health operators and caregivers and could thus improve the quality of formal and informal assistance.
Objective: To estimate the additional societal costs for people living with dementia (PwD) with agitation in home care (HC) and institutional long-term care (ILTC) settings in 8 European countries.; Design: Cross-sectional data from the RightTimePlaceCare cohort.; Setting: HC and ILTC settings from 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, and England).; Participants: A total of 1997 PwD (1217 in HC group and 780 lived in an ILTC) and their caregivers.; Main Outcome Measures: Medical care, community care, and informal care were recorded using the Resource Utilization in Dementia (RUD) questionnaire. Agitation was assessed based on the agitation symptoms cluster defined by the presence of agitation and/or irritability and/or disinhibition and/or aberrant motor behavior items of the Neuropsychiatric Inventory Questionnaire (NPI-Q).; Results: Total monthly mean cost differences due to agitation were 445€ in the HC setting and 561€ in the ILTC setting (P = .01 and .02, respectively). Informal care costs were the main driver in the HC group (73% of total costs) and institutional care costs were the main driver in the ILTC group (53% of total costs). After adjustments, the log link generalized linear mixed model showed an association between agitation symptoms and an increase of informal care costs by 17% per month in HC setting (P < .05).; Conclusion: This study found that agitation symptoms have a substantial impact on informal care costs in the community care setting. Future research is needed to evaluate which strategies may be efficient by improving the cost-effectiveness ratio and reducing the burden associated with informal care in the management of agitation in PwD.
Objective: To estimate the additional societal costs for people living with dementia (PwD) with agitation in home care (HC) and institutional long-term care (ILTC) settings in 8 European countries.; Design: Cross-sectional data from the RightTimePlaceCare cohort.; Setting: HC and ILTC settings from 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, and England).; Participants: A total of 1997 PwD (1217 in HC group and 780 lived in an ILTC) and their caregivers.; Main Outcome Measures: Medical care, community care, and informal care were recorded using the Resource Utilization in Dementia (RUD) questionnaire. Agitation was assessed based on the agitation symptoms cluster defined by the presence of agitation and/or irritability and/or disinhibition and/or aberrant motor behavior items of the Neuropsychiatric Inventory Questionnaire (NPI-Q).; Results: Total monthly mean cost differences due to agitation were 445€ in the HC setting and 561€ in the ILTC setting (P = .01 and .02, respectively). Informal care costs were the main driver in the HC group (73% of total costs) and institutional care costs were the main driver in the ILTC group (53% of total costs). After adjustments, the log link generalized linear mixed model showed an association between agitation symptoms and an increase of informal care costs by 17% per month in HC setting (P < .05).; Conclusion: This study found that agitation symptoms have a substantial impact on informal care costs in the community care setting. Future research is needed to evaluate which strategies may be efficient by improving the cost-effectiveness ratio and reducing the burden associated with informal care in the management of agitation in PwD.
Background The Carer Support Needs Assessment Tool (CSNAT) intervention is an evidence-based, person-centered approach to carer assessment and support within palliative care. As such, it requires a change in practice from a practitioner- to a carer-led assessment and support process. A paucity of research has investigated factors affecting implementation of evidence-based interventions within palliative care. Objective To examine differences between high and low adopters of the CSNAT intervention in terms of practitioner attitudes to the intervention and organizational context. Methods Phase IV study of the implementation of the CSNAT intervention at scale in 36 UK palliative care services over 6 months. Survey at baseline and 6 months of practitioners at implementation sites, informed by the Promoting Action on Research Implementation in Health Services (PARIHS) Framework. Survey tools: (a) questionnaire to assess attitudes to the CSNAT intervention; (b) Alberta Context Tool (ACT) to assess organizational context. Monthly data on intervention use enabled service classification as “high” or “low” adopters. Results Surveys returned at baseline were 157/462 and at 6 months were 69/462. Compared with low adoption services, high adopters were more likely to be hospice, at home, and day services; have a higher ratio of internal facilitators to total staff numbers; and higher scores for ACT “informal interactions” denoting more discussions about care between colleagues. Both had similarly positive attitudes to the CSNAT intervention pre-implementation, but by 6 months low adoption services developed significantly more negative attitudes, while high adoption services attitudes mostly remained the same or improved. Linking Evidence to Action Implementation may be more successful for services that offer regular opportunities to use the intervention in practice, have sufficient levels of facilitators, stimulate more staff discussion, and encourage maintenance of positive motivation. Implementation of person-centered interventions needs to plan for such factors. This has informed an implementation toolkit for the CSNAT intervention.
Purpose The burden of caregiving for stroke survivors is well known, but the effect of late stroke rehabilitation on the life situation of informal caregivers is unknown. Here, we assessed changes in the life situation of informal caregivers of stroke survivors enrolled in a multimodal intervention trial. Methods This controlled study was a questionnaire-based survey accompanying a three-armed randomized controlled trial of 123 stroke survivors. The care recipients of 106 caregivers who chose to participate were assigned to rhythm-and-music-based therapy (R-MT; n = 37), horse-riding therapy (H-RT; n = 37), or delayed intervention (control group, n = 32). Perceived changes in the life situation of the caregivers were evaluated with the Life Situation among Spouses after the Stroke Event (LISS) questionnaire before randomization, after the 12-week intervention, and 3 and 6 months later. Results After the intervention, the change in the median LISS score was significantly higher among intervention caregivers (1.5 [interquartile range (IQR) 8.8]) than controls (1.5 [IQR 8.8] vs. 0.0 [IQR 12.0], p = 0.036). The improvement was maintained at 3 months (1.5 [IQR 9.0] vs. 0.0 [IQR 10.5], p = 0.039) but not at 6 months (p = 0.284). Conclusion Engaging stroke survivors in multimodal interventions late after stroke appears to have potential to produce gains also in the general life situation of informal caregivers.
Background: Recent heart failure (HF) patient and informal caregiver (eg, dyadic) studies have either examined self-care from a qualitative or quantitative perspective. To date, the 2 types of data have not been integrated.; Objective: The aim of this study was to understand HF self-care within the context of dyadic engagement.; Methods: This was a cross-sectional, mixed methods (quantitative/qualitative) study. Heart failure self-care was measured with the Self-care of Heart Failure Index (v.6) dichotomized to adequate (≥70) or inadequate (<69). Dyadic symptom management type was assessed with the Dyadic Symptom Management Type scale. Interviews regarding self-care were conducted with both dyad members present. Content analytic techniques were used. Data were integrated using an information matrix and triangulated using Creswell and Plano Clark's methods.; Results: Of the 27 dyads, HF participants were 56% men, with a mean age of 77 years. Caregivers were 74% women, with a mean age of 66 years, representing spouses (n = 14) and adult children (n = 7). Quantitatively, few dyads scored as adequate (≥70) in self-care; the qualitative data described the impact of adequacy on the dyads' behavior. Dyads who scored higher, individually or both, on self-care self-efficacy and self-care management were less likely to change from their life course pattern. Either the patient or dyad continued to handle all self-care as they always had, rather than trying new strategies or reaching out for help as the patient's condition deteriorated.; Conclusions: Our data suggest links that should be explored between dyadic adequacy and response to patients' symptoms. Future studies should assess dyadic adequacy longitudinally and examine its relationship to event-free survival and health services cost.
Background: The GERAS II study aimed to assess societal costs and resource use associated with Alzheimer's disease (AD) for patients and their primary caregivers in Italy and Spain, stratified for different severity stages of AD at baseline. This report presents baseline results for Italy.; Design: GERAS II was a prospective, multicentre, observational study of routine care in AD.; Setting: Community-dwelling patients attending specialist secondary care centres (memory clinics/Alzheimer's Evaluation Units) and their primary informal caregivers were recruited into the study.; Participants: Patients were aged ≥55 years, presented within the normal course of care, had a diagnosis of probable AD and a Mini-Mental State Examination (MMSE) score of ≤26. Patients and caregivers were stratified according to patient AD dementia severity at baseline: mild, MMSE score 21-26; moderate, MMSE score 15-20; or moderately severe/severe, MMSE score <15.; Measurements: Data collected for patients and caregivers included demographics/clinical characteristics; current medication; patient cognitive, functional and behavioural assessments; patient and caregiver health-related quality of life (HRQoL); and patient and caregiver resource use. The costs associated with the resources used were calculated. Costs were broken down into patient healthcare costs, patient social care costs and caregiver informal care costs.; Results: Of 198 patients enrolled from Italy, 29 (15%) had mild AD dementia, 80 (40%) had moderate AD dementia, and 89 (45%) had moderately severe/severe AD dementia. Patient and caregiver characteristics showed some differences between AD dementia severity groups; for example, a numerically higher proportion of patients with mild and moderately severe/severe AD dementia were taking memantine compared with those with moderate AD dementia. Patient functioning and behavioural and psychological symptoms worsened with increasing AD dementia severity (p<0.05 between groups for all measures). No significant difference between the disease severity groups was observed in patient HRQoL, and there was no clear pattern in resource use. However, all measures of caregiver time spent helping the patient differed significantly between groups (p<0.05) and were highest in patients with moderately severe/severe AD dementia. Mean (standard deviation) total monthly societal costs per patient (2013 values) were €1850 (1901), €1552 (1322) and €2728 (2184) for patients with mild, moderate and moderately severe/severe AD dementia, respectively (p<0.001 between groups). Caregiver informal care costs were the greatest contributor to total societal costs and amounted to €1370, €1223 and €2223 per patient per month for mild, moderate and moderately severe/severe AD dementia groups, respectively (p<0.001 between groups).; Conclusion: Total Italian societal costs generally increased with increasing AD dementia severity. However, costs were slightly lower for moderate than for mild AD dementia, possibly reflecting the observed unusual trend of greater caregiver time and higher memantine use in patients with mild versus moderate AD dementia.
Euthanasia is a controversial and complex issue, especially when involving incompetent patients. On December 10, 2015, Quebec became the first Canadian province to give access to medical aid in dying (MAiD) (ie, euthanasia performed by a physician) to competent patients who satisfy strictly defined criteria. Less than 2 years later, Quebec is considering extending MAiD to incompetent patients who made an advance request. With the objective of contributing scientific data to current societal debates, we conducted a survey among 471 informal caregivers of persons with dementia, reached through Alzheimer Societies. We used a series of vignettes featuring a person with Alzheimer disease to investigate respondents' attitudes towards MAiD. The response rate was 69%. Two-thirds [68%; 95% confidence interval, 63%-73%] found it acceptable to extend MAiD to an incompetent patient at an advanced stage of Alzheimer disease who had made a written request while competent, and 91% (95% confidence interval, 87%-94%) found it acceptable at the terminal stage. Self-determination was the most widely endorsed argument in favor of access to MAiD for incompetent patients. Findings suggest strong support among informal caregivers for extending MAiD to incompetent patients, provided they are terminally-ill and had made a written request before losing capacity.;