Development and Psychometric Testing of the Caregiver Self-Efficacy in Contributing to Patient Self-Care Scale

ObjectivesCaregiver self-efficacy—a caregiver’s belief in his/her ability to contribute to patient self-care—is associated with better patient and caregiver outcomes in single chronic conditions. It is, however, unknown if caregiver self-efficacy improves patient and caregiver outcomes in multiple chronic conditions (MCCs) because there is no instrument to measure this variable. We developed the 10-item Caregiver Self-Efficacy in Contributing to patient Self-Care (CSE-CSC) scale for that purpose, and we tested its psychometric characteristics in caregivers of patients with MCCs.MethodsIn this cross-sectional multisite study, we tested the structural validity of the CSE-CSC scale with exploratory and confirmatory factor analysis, and we tested construct validity by correlating CSE-CSC scores with those of the Caregiver Contributions to Self-Care of Chronic Illness Inventory. We also tested reliability, and precision of the CSE-CSC scale.ResultsThe 358 enrolled caregivers (mean age 54.6 years; 71.5% female) cared for patients with an average of 3.2 chronic conditions. Structural validity was good, and it showed 2 factors within the scale. Construct validity showed significant correlations between scores of the CSE-CSC scale and the Caregiver Contributions to Self-Care of Chronic Illness Inventory. Reliability coefficients were between 0.90 and 0.97. Measurement error yielded satisfactory results.ConclusionsThe CSE-CSC scale is valid, reliable, and precise in measuring caregiver self-efficacy in contributing to patient self-care in MCCs. Because caregiver self-efficacy is a modifiable variable, the CSE-CSC scale can be used in clinical practice and research to improve patient and caregiver outcomes.     

Development of the final version of the occupational adaptation questionnaire for family caregivers

BackgroundGiven the growing role of family caregivers in meeting the increasing demand for ageing-related care in Japan, the occupational adaptation of family caregivers needs to be evaluated.MethodsThis study developed the Occupational Adaptation Questionnaire for Family Caregivers (OAQC) and evaluated its reliability, validity, and effectiveness. To develop the OAQC item pool, the construct ‘Occupation of nursing care engaged in by family caregivers’ was evaluated. Using the Delphi method, 8 experts evaluated 64 items and confirmed that 41 items adequately represented the domain. The scale was then completed by 216 family caregivers of users of outpatient service establishments affiliated with hospitals in the Chubu region. The validity of the scale items was tested, and statistical analysis was performed. The construct validity and internal consistency of the OAQC were examined using exploratory factor analysis and the ω coefficient, respectively.ResultsThe discrimination ability and difficulty level were calculated using the item response theory. The findings showed that the scale’s reliability and validity were satisfactory. Construct validity was acceptable for 16 items with 5 factors. The OAQC also had high internal consistency, reliability, and effectiveness. The item slope parameters and difficulty parameters revealed good item response, indicating that the scale could effectively measure family caregivers’ occupational adaptation.ConclusionThe scale was compatible with the data obtained from family caregivers. Given its overall effectiveness, data obtained using the OAQC can contribute towards implementing personal care support programs for caregivers and enriching their lives by offering support from an occupational adaptation perspective.     

Tools to evaluate medication management for caregivers of people living with dementia: A systematic review

BackgroundCaregivers often undertake medication management for people living with dementia without formal training. There is a need to evaluate caregiver medication management practices for people living with dementia to identify and address the key issues that contribute to caregiver burden.ObjectivesThis study aimed to identify and summarize approaches that evaluate medication management for caregivers of people living with dementia and appraise caregiver''s involvement in aspects of medication management.Search StrategyA systematic search was undertaken in five databases: Medline, Embase, PsycINFO, Scopus and International Pharmaceutical Abstracts. Studies written in English that contained tools and surveys that evaluated aspects of medication management for caregivers of PWD were included.ResultsA total of 10 studies were included. Medication selection was assessed in six studies, supply and monitoring/review was captured in seven studies, with administration assessed in nine studies. Caregivers were commonly involved in decision‐making for medication changes (77.1%–86.8%) and in the ordering (55.9%–86.0%) and collection (87.0%–92.4%) of medications. Reported caregiver involvement in medication administration showed a wide range (44%–94.7%) between the studies. Challenges in administration were commonly related to polypharmacy and dosage regimen complexity.ConclusionsCurrent tools capture specific aspects of medication management, with medication administration the most evaluated aspect of medication management. Future research is needed to develop a tool to holistically evaluate the complexities of medication management for caregivers of people living with dementia to minimize adverse events at transitions of care.Public ContributionFrom the authors'' previous research, caregivers highlighted the need to address key issues in medication management for people living with dementia.     

A 3-Item Screening Scale for Caregiver Burden in Dementia Caregiving: Scale Development and Score Mapping to the 22-Item Zarit Burden Interview

ObjectivesBrief screening scales for caregiver burden are much needed in routine dementia services to efficiently identify caregivers of persons with dementia (PWD) for further intervention. Although the 22-item Zarit Burden Interview (ZBI) is often used, its available screening versions have not performed as well as the full version in distinguishing significant burden. We developed a brief screening scale that is valid and comparable to ZBI in distinguishing caregiver burden.Design and settingBaseline data of an ongoing cohort study.ParticipantsFamily careivers of community-dwelling PWD (n = 394).MeasuresParticipants completed questionnaires containing ZBI and other caregiving scales. Initially, we split the study samples into 2—the derivation sample (n = 215) was used to develop a brief scale that best distinguishes significant burden (using the best-subset approach with 10-fold cross-validation), whereas the validation sample (n = 179) verified its actual performance in distinguishing significant burden. We then evaluated the derived scale in its internal consistency reliability, factorial validity, known group validity, and construct validity, and mapped the scores between the brief scale and ZBI using the equipercentile equating method.ResultsWe derived a 3-item scale which had comparable performance to ZBI in distinguishing significant burden (area under the receiver operating characteristic curve 0.86, 95% confidence interval 0.81-0.92). It had a single dimension in exploratory factor analysis and maintained good psychometric properties similar to those of ZBI. It also explained 77.8% of the variability in ZBI, and had scores that could be mapped to ZBI with reasonable precision.Conclusions and ImplicationsWe have derived a highly accessible tool to screen for caregiver burden, which can have a wider health system effect of expanding the reach of caregiver-focused interventions to services involved in the care of PWD. Notably, this screening tool was developed using rigorous methods and demonstrated comparability to ZBI in its validity, reliability, and total scores.     

Variation in Hospice Experiences by Care Setting for Patients With Dementia

ObjectivesUse of hospice care among patients with dementia has been steadily increasing. Our objectives were to characterize quality of hospice care experiences among decedents who had a primary diagnosis of dementia and their caregivers and investigate differences across settings of hospice care.DesignWe analyzed Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey data from caregiver respondents whose family members received hospice care.Setting and ParticipantsData from 96,845 caregiver respondents whose family members had a primary diagnosis of dementia and died in 2017 or 2018 while receiving hospice care in 2829 hospices.MethodsWe calculated quality measure scores overall and stratified by setting, adjusting for mode of survey administration and differences in case mix, and examined variability in hospice-level scores among decedents with dementia.ResultsMean quality measure scores ranged from 69.0 (Getting Hospice Care Training) to 90.9 (Getting Emotional Support). Measure scores varied significantly across settings, with caregivers of decedents who received care in a nursing home (NH), acute care hospital (ACH), or assisted living facility (ALF) consistently reporting poorer quality of care. Hospice-level scores varied substantially, with a wide range between the 10th and 90th percentiles of hospice performance (eg, 25 points).Conclusions and ImplicationsThere are important opportunities to improve hospice care for patients with dementia and their caregivers, particularly with respect to caregiver training, symptom management, and across all dimensions within the NH, ACH, and ALF settings. Variability in care experiences across hospices, as well as long lengths of stay for those with dementia, highlight the importance of informed and timely hospice referral.     

Development and Preliminary Evaluation of Chinese Preschoolers’ Caregivers’ Feeding Behavior Scale

BackgroundCaregivers’ feeding behavior plays a crucial role in the development of overweight and obesity in preschoolers. However, to date, there is no broadly accepted scale or questionnaire for assessing preschoolers’ caregivers’ feeding behavior in China.ObjectiveTo develop a scale that can be used to assess preschoolers’ caregivers’ feeding behavior in China and to conduct a preliminary evaluation of the scale’s reliability, validity, and discriminative ability.DesignThe scale was created through a literature review and qualitative interviews with the target population. Items were reviewed by 50 caregivers of preschoolers and 10 experienced pediatricians, and 95 items were selected to form a draft scale. The draft scale underwent three rounds of investigation, and the results from these evaluations were used to select items that formed the final scale.Participants/settingThree groups of caregivers (n=175, 400, and 912) were sampled and stratified from urban and suburban kindergartens in the cities of Jinan and Xi’an between March 2016 and October 2017 to participate in evaluations of the draft scale. From these caregiver groups, 146, 362, and 768 participants completed valid questionnaires, respectively, which were used in the scale’s evaluation.Primary outcome measuresThe general demographic data of the participants and scores of each item in the scale were the primary outcome measures.Statistical analyses performedExploratory factor analysis and variability analysis were used to evaluate the draft scale, based on data from two rounds of investigation. The structure of the scale was explored through confirmatory factor analysis, and its reliability, construct validity, and discriminative ability were evaluated based on data from a third round of investigation.ResultsThe Chinese Preschoolers’ Caregivers’ Feeding Behavior Scale (CPCFBS) consisted of 35 items and seven dimensions; the total cumulative variance contribution rate was 58.6%; the Cronbach’s α coefficient was .91; the split-half reliability coefficient was 0.89; and the test–retest reliability coefficient was 0.85. The age and weight status of the children and the caregivers’ age and education levels, as well as family incomes and child-caregiver relationships, were correlated with feeding behavior.ConclusionsThe CPCFBS appeared to have good reliability and construct validity in specific Chinese populations. Future studies are needed to confirm existing findings in different Chinese populations with larger sample sizes.     

Effectiveness of Powerful Tools for Caregivers on Caregiver Burden and on Care Recipient Behavioral and Psychological Symptoms of Dementia: A Randomized Controlled Trial

ObjectiveThe aim of this study was to evaluate the effectiveness of a psychoeducational intervention, Powerful Tools for Caregivers (PTC), for family caregivers of individuals with dementia.DesignA pragmatic, 2-arm randomized controlled trial compared the PTC intervention, as delivered in practice, to usual care. Participants randomized to usual care functioned as a control group and then received the PTC intervention.InterventionPTC is a 6-week manualized program that includes weekly 2-hour classes in a group setting facilitated by 2 trained and certified leaders. The educational program helps caregivers to enhance self-care practices and manage emotional distress.Setting and participantsTwo stakeholder organizations delivered the intervention in community settings. Participants were family caregivers of individuals with dementia recruited from the community in Florida.MethodsPrimary outcomes were caregiver burden and behavioral and psychological symptoms of dementia of the care recipient. Secondary outcomes included caregiver depressive symptoms, self-efficacy, self-rated health, and life satisfaction. Measures were collected at baseline (n = 60 participants), postintervention (n = 55), and at 6-week follow-up (n = 44).ResultsIntent-to-treat analyses found PTC reduced caregiver burden (d = −0.48) and depressive symptoms (d = −0.53), and increased self-confidence (d = 0.68), but found no significant benefit for behavioral and psychological symptoms of dementia in care recipients. PTC was rated highly by participants and program attrition was low, with 94% of caregivers completing at least 4 of the 6 classes.Conclusions and implicationsAlthough no significant effects were found for behavioral and psychological symptoms of dementia, this trial supports the effectiveness of PTC to improve caregiver outcomes as delivered in the community.     

A Responsive Feeding Questionnaire Based on Self-Determination Theory for Caregivers of Chinese Toddlers

ObjectiveTo develop and test the psychometric properties of a responsive feeding questionnaire (RFQ) on the basis of Self-Determination Theory for caregivers of toddlers aged 12–24 months in China.DesignItem generation, preliminary evaluation items, refinement questionnaire, and psychometric properties testing.SettingToddlers’ caregivers from Shandong Province, China, were surveyed online between June 2021 and February 2022 (n = 616).Main Outcome MeasureContent, face, and construct validity and reliability of the RFQ.AnalysisContent validity was performed on the basis of expert panel feedback and cognitive interviews among caregivers. Construct validity was evaluated using principal component analysis with varimax rotation. Test-retest reliability was conducted with a sample of 105 caregivers.ResultsOver 3 phases of testing, a new instrument was developed to measure responsive feeding in toddler caregivers. The instrument was reliable, with an internal consistency of 0.87 and an intraclass correlation of 0.92. The principal component analysis identified a 3-factor solution (autonomy support, positive involvement, appropriate response) aligning with a theoretical framework from Self-Determination Theory. The final version of the instrument included 23 items.Conclusions and ImplicationsThe 23-item RFQ has been validated in a Chinese population. Future research needs to validate this instrument in other countries and with children of different ages.     

Measuring quality and level of care provided by family caregivers of persons with dementia: protocol for a systematic review of validated instruments

BackgroundChanges in the quality-of-life (QoL) of family caregivers as they care for their loved ones with dementia over time may affect the quality or level of care that these caregivers provide. We do not know if validated instruments exist to directly measure this quality or level of care. The purpose of this systematic review is to identify validated instruments for measuring the quality or level of care provided by family caregivers of persons with dementia.MethodsWe will include articles containing a validated instrument or questionnaire designed to measure quality or level of care provided by the aforementioned group of caregivers. The included articles may utilize the tools in primary or secondary data analyses, or evaluate the tools'' psychometric properties. The following electronic databases will be searched from inception date to the present: Medline, CINAHL Complete, Cochrane Central, and PsycINFO. We will also search the gray literature, the reference lists of included articles, and contact experts in the field to help identify relevant instruments. Included articles will be required to report on an instrument measuring at least one of the following outcomes: quality of care, level of care, appropriateness of care, amount of time spent providing care, and caregiver performance. Two reviewers will independently screen retrieved citations, extract data, and assess the methodological quality of each included article. A narrative synthesis method will be used to describe the findings.DiscussionResults of this systematic review will show whether validated instruments exist to measure the quality or level of care provided by family caregivers of persons living with dementia. This will make it possible to develop initiatives that are targeted towards improving the quality or level of care provided by family caregivers.     

Problemas en el proceso de adaptación a los cambios en personas cuidadoras familiares de mayores con demencia

ObjectiveTo identify and analyse problems in adapting to change among the family caregivers of relatives with dementia.MethodQualitative study based on the methodology of Charmaz's Constructivist Grounded Theory. Seven focus groups were conducted in different primary health care centres in the province of Jaen (Spain). Eighty-two primary family caregivers of relatives with dementia participated by purposeful maximum variation sampling and theoretical sampling. Triangulation analysis was carried out to increase internal validity.ResultsWe obtained three main categories: ‘Changing Care’, ‘Problems in the process of adapting to change’ and ‘Facilitators of the process of adapting to change’. Family caregivers perform their role in a context characterized by personal change, both in the person receiving the care and in the social and cultural context. The challenge of adaptation lies in the balance between the problems that hamper adaptation of the caregiver to new situations of care and the factors that facilitate the caregiver role.ConclusionsThe adaptation of family caregivers to caring for a person with dementia is hindered by the lack of formal support and under-diagnosis of dementia. The adaptation process could be improved by strengthening formal support in the early stages of care to reduce the stress of family caregivers who must teach themselves about their task and by interventions adapted to each phase in the development of the caregiver role.     

Professional caregivers' mental health problems and burnout in small-scale and traditional long term care settings for elderly people with dementia in the Netherlands and Belgium

ObjectivesThe aim of this study was to provide an insight into burnout and mental health problems of professional caregivers working in traditional and small-scale long term care settings for elderly residents with dementia in the Netherlands and Belgium.DesignThis study was part of a larger study investigating similarities and differences between traditional and small-scale long term care settings for elderly residents with dementia. In this article, the perspective of the professional caregiver is of central importance. A survey was conducted among professional caregivers of residents with dementia, older than 65 years, at 2 measurement moments (at baseline and after 12 months).SettingThe questionnaire was administered to professionals working in traditional and small-scale long term care settings in the Netherlands and Belgium.ParticipantsProfessional caregivers (n = 80) working in 5 different care settings completed a questionnaire.MeasurementsThe questionnaire included items on personal data, mental health problems (GHQ-12), and burnout (UBOS-C, divided into emotional exhaustion, depersonalization, and personal accomplishment). Analyses were conducted using Mixed Models analysis.ResultsAlthough mental health problems and emotional strain increased significantly over time in both types of settings and countries, overall levels of health problems and burnout were low. As regards emotional strain, professional caregivers in small-scale living facilities showed significantly increased levels in comparison with traditional units. Two significant differences between the countries were also found, with less “depersonalization” and more “personal accomplishment” in Dutch settings compared with Belgian settings. No differences emerged for type of setting or over time on “depersonalization” and “personal accomplishment.” The analyses were controlled for age, sex, educational level, and work experience in dementia care, but did not yield significant effects.ConclusionOwing to cutbacks in expenditure, the growing number of people with dementia, and the heavier workload, the working environment will become increasingly challenging. Future research should focus on training professional caregivers working in long term care settings how to maximize the quality of client interaction while keeping burnout and mental health problems to a minimum.     

Supporting Informal Caregivers of People With Dementia in Cost-Effective Ways: A Systematic Review and Meta-Analysis

ObjectivesCaring for persons with dementia is a heavy burden for informal caregivers. This study aimed to appraise the economic evidence of interventions supporting informal caregivers of people with dementia.MethodsLiterature was searched, and trial-based studies evaluating the costs and effects of interventions supporting informal caregivers of people with dementia were included. Cost data were analyzed from both healthcare and societal perspectives. Random-effects models were used to synthesize cost and effect data, based on mean differences (MDs) or standardized MDs.ResultsOf 33 eligible studies identified from 48 588 records, 14 (42.4%) showed net savings in total cost regardless of analytical perspectives. Among 22 studies included in meta-analyses, caregiver-focused psychosocial interventions showed improvements in caregivers’ psychological health (n = 4; standardized MD 0.240; 95% confidence interval 0.094-0.387); nevertheless, the increases in societal cost were significant (n = 5; MD 3144; 95% confidence interval 922-5366). Psychological intervention and behavioral management engaging patient-caregiver dyads showed positive effects on caregivers’ subjective burden, also with increases in total cost. Subgroup analyses indicated that the inclusion of different intervention components, the caregiver characteristics, and the follow-up periods could affect the costs and effects of interventions supporting informal caregivers.ConclusionsPsychosocial interventions directed at informal caregivers and dyad-based psychological and behavioral interventions are effective but also expensive. The use of these interventions depends on the society’s willingness to pay. More comprehensive economic evidence of interventions supporting informal caregivers is required, and the design of intervention should focus more on different intervention components, characteristics of patients and caregivers, and healthcare systems.     

Development of a quality of life questionnaire for nursing home residents in mainland China

Objective

To develop and validate a quality of life (QOL) questionnaire for nursing home (NH) residents in mainland China.

Methods

A cross-sectional study including a development sample (n?=?176) and validation sample (n?=?371) of NH residents aged 60 and older was conducted between 2015 and 2016 in Jinan, Shandong Province, China. Resident interviews, literature reviews, expert panels, and pilot studies were used to identify QOL domains and items pertinent to NH life. Exploratory and confirmatory factor analysis were used to develop and validate a QOL questionnaire. Reliability (internal consistency, spilt-half reliability, and test–retest reliability) and validity (construct and criterion validity) were evaluated for the questionnaire.

Results

The self-report Chinese NH QOL questionnaire had 9 domains and 38 items including physical health (4 items), food enjoyment (6 items), security (3 items), environmental comfort (5 items), autonomy (2 items), meaningful activity (3 items), interrelationship (6 items), family relationships (3 items), and mood (6 items). The nine-factor model was confirmed with the following fit indices: χ²/df?=?1.872, root mean square error of approximation?=?0.049, comparative fit index?=?0.913, and Tucker-Lewis index?=?0.903. The 38-item NH QOL questionnaire showed satisfactory construct validity, criterion validity, internal consistency (Cronbach’s alpha?=?0.89, spilt-half reliability?=?0.73, test–retest reliability?=?0.76).

Conclusions

The NH QOL questionnaire appears to be a reliable and valid instrument and should be incorporated into a set of quality measures for use with NH residents in mainland China

     

Important components for Dutch in‐home care based on qualitative interviews with persons with dementia and informal caregivers

BackgroundDementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs.ObjectiveTo identify important components of in‐home care for persons with dementia and their informal caregivers in the Netherlands.DesignSemi‐structured interviews across the Netherlands, between March and June 2019 using thematic analysis.Setting and participantsPersons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi‐structured interviews findings.ResultsFive themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers.ConclusionThis study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.     

The Attitudes Toward Tube-Feeding in Advanced Dementia (ATT-FAD) Questionnaire: A Valid and Reliable Tool

Abstract

Registered Dietitians (RDs) should participate in interdisciplinary feeding discussions for patients with advanced dementia, but research on how RDs make such feeding recommendations is scarce. This study developed and validated a theory-based questionnaire to assess the knowledge, beliefs, and attitudes of RDs regarding feeding tube use among older adults with advanced dementia. The instrument was drafted based on the Social Ecological Model, and face and content validity were established through an expert panel review. Pilot testing with 70 RDs provided an initial measure of internal consistency reliability and reduced the number of items in the survey. Efficacy testing with 662 RDs allowed for a second analysis of internal consistency reliability and eliminated additional items. Construct validity was then established using validation by extreme groups and exploratory factor analysis, yielding six subscales, each with adequate internal consistency and test-retest correlation coefficients: (I) Total Knowledge, (II) Knowledge Self-Efficacy, (III) Religion/Spirituality/Culture, (IV) Personal Values, (V) Perceived Organization and Training, and (VI) Perceived Policy. The survey, based on the Social Ecological Model, was deemed a valid and reliable tool to assess RDs’ knowledge and attitudes regarding feeding tube use among older adults with advanced dementia.     

Selecting the Best Instruments to Measure Quality of End-of-Life Care and Quality of Dying in Long Term Care

ObjectivesTo compare available instruments and investigate which best measure the quality of end-of-life care (QOC) and quality of dying (QOD) in long term care settings, in terms of validity, reliability, and feasibility.DesignFamily and professional caregivers of long term care decedents completed postdeath interviews and questionnaires between November 2007 and April 2009.SettingNursing home and residential care/assisted living settings in the United States and the Netherlands.ParticipantsTwo hundred and sixty four families of decedents with (48%) and without (52%) dementia in the United States, and 70 families and 103 professional caregivers of decedents with dementia in the Netherlands.MeasurementsTen instruments to evaluate the QOC and QOD in long term care, an additional overall assessment of QOC/QOD, and an assessment of the perception of the relevance and ease of use of each instrument. Criteria for validity, reliability, and feasibility were set forth for good, intermediate, and poor performance.ResultsNone of the instruments scored positively on all criteria. In both countries, of the QOC instruments, the End-of-Life in Dementia-Satisfaction With Care (EOLD-SWC) best met the criteria, followed by the Family Assessment of Treatment at the End-of-Life Short Version, the Family Perception of Care Scale, and Family Perception of Physician-Family Caregiver Communication. Of the QOD instruments, the End-of-Life in Dementia–Comfort Assessment at Dying (EOLD-CAD) and Mini-Suffering State Examination (MSSE) met more of the criteria than others. The EOLD-CAD performed better on content and construct validity than the MSSE. The MSSE performed better on feasibility.ConclusionWe recommend the EOLD-SWC to measure QOC, and the EOLD-CAD and MSSE to measure QOD in populations with dementia and in mixed long term care populations of nursing home or residential care home/assisted living residents, because they performed best in both countries. Use of the same instruments allows for comparison of the results between studies.     

Development and validation of the caregiver roles and responsibilities scale in cancer caregivers

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.

     

Adaptación y validación de la escala CCAENA© para evaluar la continuidad asistencial entre niveles de atención en Colombia y Brasil

ObjectiveTo adapt and to validate the scale of the questionnaire Continuity of Care between Care Levels (CCAENA^©) in the context of the Colombian and Brazilian health systems.MethodsThe study consisted of two phases: 1) adaptation of the CCAENA^© scale to the context of each country, which was tested by two pretests and a pilot test, and 2) validation by means of application of the scale in a population survey in Colombia and Brazil. The following psychometric properties were analyzed: construct validity (exploratory factor analysis), internal consistency (Cronbach's alpha and item-rest correlations), the multidimensionality of the scales (Spearman correlation coefficients), and known group validity (chi-square test).ResultsOf the 21 items of the original scale, 14 were selected and reformulated based on a statement with response options of agreement to a question with frequency response options. Factor analysis showed that items could be grouped into three factors: continuity across healthcare levels, the patient-primary care provider relationship, and the patient-secondary care provider relationship. Cronbach's alpha indicated good internal consistency (>0.80 in all the scales). The correlation coefficients suggest that the three factors could be interpreted as separated scales (<0.70) and had adequate ability to differentiate between groups.ConclusionThe adapted version of the CCAENA^© shows adequate validity and reliability in both countries, maintaining a high equivalence with the original version. It is a useful and feasible tool to assess the continuity of care between healthcare levels from the users’ perspective in both contexts.     

Family caregivers’ perceptions of hospital‐based allied health services post‐stroke: Use of the Measure of Processes of Care to investigate processes of care

Aim: To investigate family caregiver perceptions of allied health professional processes of care and support in hospital following stroke, and to test an adapted version of the Measure of Processes of Care (MPOC) for its suitability of use in the stroke care setting. Methods: The first stage involved the adaptation and refinement of the MPOC, designed to measure caregiver perceptions of processes of professional care and support across five care dimensions. The second stage involved mailing out of questionnaires to primary caregivers of stroke survivors. A total of 107 completed questionnaires were included in the analysis. The reliability of the adapted questionnaire was assessed and summary statistics were computed. Results: The reliability of the adapted MPOC was found to be high, with good internal consistency of items within each subscale. Mean scores indicated that caregivers were most likely to report negative perceptions of the way allied health professionals engaged with and supported them, particularly in the area of information provision. Conclusion: The number of families being affected by stroke is predicted to rise substantially in the near future. Allied health professionals have a significant role to play in supporting family caregivers. Results highlight caregiver‐identified areas of weakness in current clinical practice.     

Depression in People With Dementia and Caregiver Outcomes: Results From the European Right Time Place Care Study

ObjectiveTo investigate the cross-sectional associations between depression in people with dementia and both caregiver burden and quality of life in 8 European countries, and to test these associations compared with the presence of other neuropsychiatric symptoms.DesignCross-sectional study.Setting and ParticipantsIn total, 1223 dyads comprised of informal caregivers and people with dementia living in a community-dwelling setting, recruited from the Right Time Place Care study, a cohort survey from 8 European countries.MeasuresTo test the associations between depression (according to the Cornell Scale for Depression in Dementia) and informal caregiver burden (defined by the Zarit scale and hours of supervision in terms of Resource Utilization in Dementia), distress (defined by the Neuropsychiatric Inventory Questionnaire distress score), and quality of life (according to the visual analogue scale and 12-item General Health Questionnaire).ResultsLinear regressions showed an association between depression and main outcomes (Zarit scale: β 3.7; P = .001; hours of supervision: β 1.7; P = .004; Neuropsychiatric Inventory Questionnaire distress score: β 1.2; P = .002). A similar association was found concerning psychological and overall well-being (12-item General Health Questionnaire: β 1.8; P < .001; Euroqol Visual Analogue Scale: β −4.1; P = .003). Both associations remained significant despite the presence of other NPS and after adjusting for confounders.Conclusions and ImplicationsFurther studies are needed to assess whether providing tailored strategies for optimizing diagnosis and managing of depression in people with dementia might improve caregiver quality of life and reduce their burden in the community-dwelling setting.