Outcomes of family involvement in care intervention for caregivers of individuals with dementia

BACKGROUND: Despite the increasing number of individuals with dementia relocated from caregiving at home to a nursing home, there is only a small body of literature examining the influence of institutional family-oriented practices on family member perceptions of care and family-staff relationships. OBJECTIVE: The study tested the effects of the Family Involvement in Care partnership intervention on family members' perceptions of their caregiving role, relationships with staff, and satisfaction with the care of relatives with dementia residing in special care units as well as the effects on staff attitudes toward families and staff satisfaction with a caregiving role. METHODS: A quasi-experimental design with nonequivalent groups and repeated pretest and posttest measures was used to examine the effects of the Family Involvement in Care intervention. The study recruited 14 Midwestern nursing home special dementia care units, matched by aegis and staff turnover, and randomized from matched pairs to experimental and control conditions. The samples included 185 family members and 895 staff. The Family Involvement in Care intervention is a protocol for family and staff negotiation of a written partnership agreement. Family caregiver outcomes were measured using instruments pretested for reliability and validity. Data were analyzed using hierarchical linear modeling. RESULTS: With adjustment for multiple tests, statistically significant beneficial intervention effects were found in three areas of family caregiver outcomes (emotional reactions to the caregiving role, perceptions of relationships with staff, and perceptions of care for relatives) and in one of three areas of staff outcomes (staff perceptions of the family caregiving role). For family members, effects were found for the measures assessing loss, captivity, staff disregard, resident activities, and physical care. Some of the intervention effects for family members were found only for caregivers of the same generation as the resident. For staff, effects were found for measures of dominion, disruption by family, and irrelevance of family. CONCLUSIONS: The results of the study indicate that the Family Involvement in Care intervention improves the caregiving experience of family members in nursing homes as well as nursing home staff attitudes toward family members. The intervention did not influence the perceived conflict with staff on the part of family caregivers or the perception of a partnership with family caregivers on the part of staff.     

Seizing possibilities for positive family caregiving in nursing homes

Aims. This paper explores the ways family members reconstruct meaning through seizing possibilities for positive caregiving in nursing homes. Background. The importance of the ability of family caregivers to adapt and accommodate has been well documented in international family caregiving research. Through engagement in caregiving activities, families learn to modify, adapt and accommodate to changes in their situation and relationships. The support family caregivers experience in learning to accommodate change is crucial in enabling them to reconstruct positive aspects of caregiving in a long‐term aged care context. Method. In this study, a hermeneutic phenomenological approach was adopted informed by the philosophical world views of Heidegger and Gadamer. Data collected by in‐depth interviews and participant observations, from a purposeful sample of 14 family caregivers, underwent hermeneutic analysis. Results. Five shared meanings associated with seizing possibilities for positive caregiving were revealed: accommodating new and different ways of caring; feeling a part of the nursing home community; seeing the whole picture; learning to care in stress‐reducing ways and learning to seize possibilities for self. Conclusion. This paper illustrates how families, through caregiving experience in nursing homes, learn to become active managers, negotiating, accommodating and redeveloping a sense of future viewed with hope, strength and positive anticipation. Relevance to clinical practice. By highlighting what is attributed significance by families, a critical examination of the difficult issues which obstruct the development of meaningful partnerships among nurses, family and their relatives is facilitated. In particular, an examination of tensions at an ideological level supports the need for future research to focus its efforts on examining the ways of implementing nursing care that facilitates partnerships that incorporate and build upon positive and equal relations among staff, families and residents in the context of the nursing home setting.     

Development and Psychometric Testing of the Suicide Caring Competence Scale (SCCS) for Family Caregivers in Taiwan

Suicide caring competence is important for family caregivers to care their relatives with suicidal tendencies. The purpose of this study was to develop and test the psychometric properties of the Suicide Caring Competence Scale (SCCS) for family caregivers in Taiwan. A 20-item SCCS was tested on 165 family caregivers. Confirmatory factor analysis indicated that five subscales with 19 items best fit the data. The Cronbach's α and test–retest reliability of the SCCS was 0.90 and 0.81, respectively. The SCCS demonstrated acceptable construct validity and reliability. Nurses can use the SCCS to assess the suicide caring competence of family caregivers.     

Family and paid caregivers of hospitalized patients in Korea

Aim. To examine patient need for family and paid caregivers during hospitalization and determine factors related to caregiver use and the economic burden for paid caregivers. Background. Provision of nursing care is influenced by the characteristics of the society and its health care system. An influencing factor in Korea is the involvement of family caregivers in inpatient care. Korean society has preserved the strong tradition of family bonds and filial responsibility for caregiving. However, the ability of Korean families to assist hospitalized family members has decreased as the society becomes more industrialized. Design. A cross‐sectional study design was used, employing data from the Seoul Citizens’ Health Survey, a community‐based interview survey with 3203 inpatients in Seoul, conducted in 2001. Methods. Distributions of caregivers and related factors were explored by employing univariate comparisons and multivariate logistic regression analyses. Results. During hospitalization, 87% of patients needed caregivers. A greater need for caregivers was found in children, women giving birth and patients with disability, longer length of stay and discharge from general hospitals. Family members were the primary caregivers while 3% of inpatients used private paid caregivers. Having paid caregivers was associated with being female, older, high household income, disability, longer stay and discharge from general hospitals. The average daily expense for paid caregiver was 38·5 US dollars (USD) and 73% of patients perceived it as burdensome. Conclusions. The demonstrated need for caregivers may suggest that patients rely on family and paid caregivers in receiving assistance and care during hospitalization. Therefore, implementation of policies to relieve the burden of caregivers is necessary at both institutional and national levels. Relevance to clinical practice. Nursing services need to be redesigned in response to changing needs and expectations of patients and their family members.     

Validity and reliability of Turkish Caregiver Burden Scale among family caregivers of haemodialysis patients

Aims and objectives. To investigate the validity and reliability of the Caregiver Burden Scale in family members who provide primary care for haemodialysis patients. Background. In Turkey, there is a need for a multi‐dimensional instrument to evaluate the caregiver burden in people who provide care for patients with chronic diseases. Design. A methodological study. Methods. The study sample consisted of 161 family members who provide primary care for haemodialysis patients. The forward‐backward translation method was used to develop the Turkish Caregiver Burden Scale. The reliability was based on internal consistency investigated by Cronbach’s alpha and item–total correlation. The factorial construct validity of the scale was tested with confirmatory factor analysis. By means of convergent and divergent validity, correlation between Caregiver Burden Scale and 36‐Item Short Form Health Survey (SF‐36) and correlation between Caregiver Burden Scale and the Maslach Burnout Scale were investigated. Results. Cronbach’s alpha and item–total correlations results suggested that there was good internal reliability. We found five underlying factors similar to original Scale’s five‐factor solution. The confirmatory factor analysis five‐factor model represented an acceptable fit. Factor loadings were significant, with standardised loadings ranging from 0·43–0·81. By means of divergent validity, all sub‐dimension scores and the total score of the Caregiver Burden Scale were negatively correlated with the SF‐36, whereas there was a positive correlation with the emotional exhaustion and depersonalisation subscales of the Maslach Burnout Scale as expected. Conclusion. These results suggest that the Caregiver Burden Scale is a reliable and valid instrument which can be used with confidence in Turkish caregivers for haemodialysis patients to screen caregiver burden. Relevance to clinical practice. The burden experienced by people who provide care for patients with chronic diseases can be evaluated with the Caregiver Burden Scale. Additionally, the Caregiver Burden Scale can be used in the evaluation of the effectiveness of attempts to decrease caregiver burden.     

Psychometric properties of the Norwegian Person‐centred Climate Questionnaire from a nursing home context

Background: The physical and psychosocial environments in nursing homes influence the residents’ everyday life as well as their well‐being and thriving. The staff’s perceptions of and relationships with the residents are crucially important to quality care. Quality care is described often as person‐centred. Few measurement tools exist that focus on person‐centred care in nursing homes. Objective: The aim of this study was to evaluate the psychometric properties of the Norwegian version of the Person‐centred Climate Questionnaire–Staff version (PCQ‐S). Design: This study had a cross‐sectional survey design. Participants and Settings: Two hundred and nine healthcare and support staff in five nursing homes in the eastern part of Norway. Methods: The Swedish PCQ‐S was translated into Norwegian with forward and backward translation. The relevance of the items included in the questionnaire was assessed by an expert panel of 10 nursing home care staff, because the questionnaire has not been used in this context previously. A psychometric evaluation using statistical estimates of validity and reliability was performed. The discriminatory capacity of the questionnaire was also tested. Results: The content validity index was satisfactory (0.78). The PCQ‐S showed high internal consistency reliability in that Cronbach’s α was satisfactory for the total scale (0.92) and the three subscales (0.81, 0.89 and 0.87). The test–retest reliability was also satisfactory as evident from a Spearman’s correlation coefficient of 0.76 (p < 0.01) between the total PCQ scores at test and retest. The Norwegian version retained the original factor structure of the Swedish version. Conclusion: As the psychometric evaluation showed satisfactory validity and reliability scores, this study supports the Norwegian version of the PCQ‐S when applied to a sample of nursing home staff.     

The validity and reliability of a Chinese version of the family burden interview schedule

BACKGROUND: The caregiver burden within the family is one of the most commonly used outcome variables in research studies of patient care provision. However, few measures of family caregiver burden have been validated for use with Asian populations. OBJECTIVE: To examine the reliability and validity of the Chinese version of the Family Burden Interview Schedule. METHOD: The first phase of the investigation involved translation and back translation of the measure for burden and a review by an expert panel. In this phase, equivalence between the Chinese and English versions, content validity, and test-retest reliability of the Family Burden Interview Schedule were assessed using a sample including 30 family caregivers of mental patients. The second phase established the internal consistency and construct validity of the scale using a sample comprising 185 family caregivers of patients with schizophrenia. Sensitivity of the scale for families of schizophrenic patients was examined through comparison with 40 caregivers of patients who had major affective disorder. RESULTS: The Chinese version of the Family Burden Interview Schedule adequately addressed the original concepts and dimensions, achieving 96% on the Content Validity Index. These results demonstrated high levels of equivalence with the original English version (intra-class correlation [ICC] of .87 for the overall scale and.80-.89 for the six domains). It also demonstrated a high internal consistency (Cronbach alpha of .87 for the scale and .78-.88 for the domains) and adequate test - retest response stability (r = .83 for the scale and r = .88-.92 for the domains). The mean scores for the overall scale and domains of the Family Burden Interview Schedule differed significantly between the family providers of care for the two illness groups and between the groups with high and low time involvement in caregiving. The principal components analysis showed the presence of five factors that together explained 65.85% of the variance. It also demonstrated high factor loadings as well as item-to-scale and between-subscales intercorrelations, indicating good construct validity of the burden measure. DISCUSSION: The findings for the psychometric properties of the Chinese version of the Family Burden Interview Schedule established its potential as a research instrument for measuring caregiver burden among Chinese patients with schizophrenia.     

Development of instruments to measure appraisal of care among Japanese family caregivers of the elderly.

The purpose of this study was to develop two instruments for the evaluation of positive and negative appraisal of care among family caregivers of elderly Japanese care recipients within the framework of caregiver adaptation. The positive appraisal of care instrument (PAC) includes domains of relationship satisfaction, role confidence, consequential gain, and normative fulfillment. The negative appraisal of care instrument (NAC) includes domains of role exhaustion, isolation, relationship difficulty, and symptom management difficulty. The PAC and NAC are self-administered questionnaires and were developed from data collected from 337 family caregivers of relatives aged 65 years and over who were using visiting nursing services from 21 organizations in multiple areas of Japan. Out of 87 items, 21 PAC items and 14 NAC items were selected based on content and construct validity and internal consistency examination. Results show evidence of validity and reliability for the PAC and NAC, although some NAC domains may benefit from further refinement. The PAC and NAC will be useful research tools for examining elder caregiving experience and evaluating nursing care for elders.     

Reliability and validity of the Algase Wandering Scale – version 2 for Japanese people with dementia

In Japan, where older people already make up more than 23% of the population and the proportion is still growing, the burden on those caring for people with dementia is an increasing problem. This burden is magnified by wandering behavior, a peripheral symptom. Thus, there is a need for an objective measure of wandering behavior to determine what constitutes effective care. In this study, we translated the Algase Wandering Scale – Version 2 into Japanese, and examined its reliability and validity. Ambulatory residents with dementia were selected from two nursing homes and two wards specializing in dementia care in hospitals in Japan. Nurses and care workers taking care of these residents answered questionnaires regarding the residents. From the results, the Algase Wandering Scale – Version 2, Japanese version, was examined for inter‐rater reliability, stability, internal consistency, and concurrent validity. The results of the analysis in the present study demonstrated that the Algase Wandering Scale – Version 2, Japanese version, has reliability and validity, and that it can measure the presence or absence of wandering and its severity. Surveys of residents with various wandering patterns in many facilities and verification of construct validity are warranted in the future.     

Mastery, burden, and areas of concern among family caregivers of mentally ill persons

In an era of limited resources for mental health care, family interventions need to target areas where they are responsive to families' expressed needs. Although family burden has been documented, less is known about the areas of concern that families feel they need direct assistance with, to be effective caregivers. Telephone interviews were conducted with 30 family members of mentally ill relatives. Burden, sense of mastery, and contexts of caregiving were assessed. Open-ended questions elicited further understandings of caregiving concerns. The most frequently identified burden was "worry about the future." The greatest concern was "dealing with sadness and grief." Recommendations for assessing family concerns are presented.     

Family caregiver perspectives on social relations of elderly residents with dementia in small‐scale versus traditional long‐term care settings in the Netherlands and Belgium

Aims and objectives. To provide insight into family caregiver perspectives on social relations within the ‘caregiving triangle’ between family caregiver, professional caregiver and elderly resident with dementia. Results were compared between traditional versus small‐scale long‐term care settings in the Netherlands and Belgium. Background. Residential dementia care is shifting towards a more holistic and person‐centred approach. Until now, little is known about family caregiver perspectives. Design. A quasi‐experimental longitudinal design. Methods. This study was part of a larger research project focusing on the quality of life of residents with dementia in traditional and small‐scale settings (n = 179). This study focused on family caregivers related to these residents (n = 64). They filled in a questionnaire containing 25 items (baseline and after 12 months) related to their perspectives on the interaction within the ‘caregiving triangle’. Analyses were performed using mixed models and logistic regression. Results. Compared to traditional settings, family caregivers of relatives with dementia living in small‐scale settings had more contact with the professional caregivers, were more satisfied with this contact and felt that staff paid more attention to their feelings as family members. They also reported that staff showed better listening skills towards the residents. Furthermore, compared to those in Belgium, family caregivers in the Netherlands perceived staff to be less hurried and more accepting of help from family and felt that staff more often takes the resident seriously. Conclusion. In the move towards more person‐centred care for residents with dementia, this study finds preliminary evidence for the importance of integrating the family perspective. Relevance to clinical practice. Gaining more insight into the perspectives of family caregivers on the social relations within the ‘caregiving triangle’ may provide knowledge about the importance of the social system surrounding elderly residents with dementia and can provide pointers for future research.     

Korean version of the Revised Caregiving Appraisal Scale: a translation and validation study

AIM: This paper is a report of a study to examine the reliability and validity of a Korean version of the Revised Caregiving Appraisal Scale with Korean caregivers of older stroke survivors. BACKGROUND: The Revised Caregiving Appraisal Scale was developed in the United States of America for an American English-speaking population to measure primary caregivers' appraisals of potential stressors and the efficacy of their coping efforts related to caregiving experiences. METHODS: Using the back-translation method, the instrument was translated into Korean. The Korean version of the Revised Caregiving Appraisal Scale was self-administered by 147 primary family caregivers recruited from three outpatient clinics and two home health agencies in Korea. The study was conducted in 2005. RESULTS: In this sample, Cronbach's alpha for the total scale was 0.86. Reliability coefficients for each of the five subscales ranged from 0.40 to 0.85. Two subscales, burden and satisfaction, showed good reliability; one subscale, impact, showed marginally acceptable reliability; two subscales, mastery and demand, had low reliability. Principal components factor analysis of the Korean version of the Revised Caregiving Appraisal Scale yielded six factors. Except for the mastery domain, which was divided into two factors, the other factors were similar to those in the original scale. CONCLUSION: The Korean version of the Revised Caregiving Appraisal Scale had adequate reliability and validity in a sample of Korean caregivers of stroke survivors. It can be used to assess the impact of caregiving and interventions on Korean caregiver attitudes. Further studies are needed with different categories of caregiver.     

Psychometric properties of the extended Care Dependency Scale for older persons in Egypt

Aim. The aim of this study was to determine the validity and reliability of the modified Arabic Care Dependency Scale for self‐assessment of older persons in Egypt and to compare these self‐assessments to proxy assessments by care givers and family members. Background. The Care Dependency Scale is an internationally used instrument to measure care dependency. The Arabic version may improve data collection on this phenomenon in the Middle East where the population is ageing. Design. A cross‐sectional study with a sample of 611 older persons living in Greater Cairo. Participants belonged to three groups: nursing home residents, home care recipients and non‐care recipients; 459 participants were also rated by proxies and 171 repeated their self‐assessment after two weeks. Methods. The correlation between sum scores of the Care Dependency Scale and the Activities of Daily Living scale was calculated to establish criterion validity. Construct validity was determined by comparing care recipients and non‐care recipients with regard to their Care Dependency Scale sum scores and by exploratory factor analysis. Intraclass coefficients were used to assess test‐retest reliability of self‐ratings for each item. Mean differences between self and proxy assessment were calculated. Results. The Care Dependency Scale had a strong correlation to the Activities of Daily Living scale and is able to distinguish between care recipients and non‐care recipients. Factor analysis revealed one factor for basic needs and one factor for psychosocial needs. ICC values were >0·7 for most items related to the factor for basic needs among care recipients. Proxy assessment yielded higher care dependency than self assessment. Conclusion. Care Dependency Scale items for basic needs are suitable to assess care dependency among Egyptian care recipients. Relevance to clinical practice. Assessment of care dependency is useful to obtain data for appropriate resource allocation among care recipients.     

Development and Preliminary Testing of the Quality of Spiritual Care Scale

ContextThe provision of spiritual care is considered a key element of hospice and palliative care, but there is a paucity of empirically developed quality-of-care measures in this domain.ObjectivesTo describe the development and reliability and validity of the Quality of Spiritual Care (QSC) scale in family caregivers.MethodsWe conducted analyses of interviews conducted that included the QSC scale with family members of residents who died in long-term care settings taken after the resident had died. To determine reliability and validity of the QSC scale, we examined internal consistency, concurrent construct validity, and factor analysis with promax rotation.ResultsOf 165 family caregivers of decedents who were asked whether they received spiritual care, 91 (55%) responded yes, and 89 of these (98%) completed at least 80% of the QSC items. Two items (i.e., satisfaction with and value of spiritual care) were perfectly correlated so the latter item was dropped in scale development. Factor analysis identified two factors, personal spiritual enrichment (mean pattern matrix loading = 0.77) and relationship enrichment (mean pattern matrix loading = 0.72). Reliability analysis yielded a Cronbach's alpha of 0.87, and item-total correlations for all items were in excess of 0.55. Preliminary validity of the QSC was supported by significant and expected correlations in both direction and magnitude with items from validated instruments conceptually associated with the quality of spiritual care.ConclusionPreliminary testing of the QSC scale suggests that it is a valid and reliable outcome measure of the quality of spiritual care at the end of life.     

How much should we expect? Family caregiving of AIDS patients in rural Uganda.

The aim of this study was to measure the burden of care for family caregivers of AIDS patients. A cross-sectional exploratory design was used to describe the care experiences of family caregivers of AIDS care recipients. A questionnaire was used to interview 120 family caregivers of AIDS patients from four rural areas in western Uganda. The questions asked were related to 12 domains of family caregiving. Care burden scores of caregivers were calculated. It was found that care burden scores were high in all domains except those regarding relationships within the families and substance abuse. Serious work overload and low health status were reported. The high burden of caregiving puts family caregivers at risk for decreased health status and increased social isolation and depression.     

Problem-solving counseling for caregivers of the cognitively impaired: effective for whom?

BACKGROUND: Individualized problem-solving counseling for caregivers of cognitively impaired relatives is thought to help caregivers cope with the stress and burden of caregiving. Few studies have shown the effectiveness of counseling for these caregivers. OBJECTIVES: To determine the effectiveness of individualized problem-solving counseling by nurses for caregivers and the expenditures of health care utilization. METHOD: Caregivers (n = 77) of the cognitively impaired living at home were randomized to receive nurse counseling or not. Psychosocial adjustment to their relative's illness, psychological distress, burden, coping skills, and expenditures were measured after 6 months and 1 year. RESULTS: Although on average, all caregivers receiving nurse counseling indicated no improvement in psychosocial adjustment to their relative's illness, psychological distress, or caregiver burden, they found counseling very helpful and it was effective for a subgroup of caregivers. Those with poor logical analysis coping skills at baseline had decreased psychological distress (F(1,53) = 9.7, p = .003) and improved psychosocial adjustment (F(1,53) = 4.7, p = .035) after 1 year. Caregivers in control and counseling groups whose relatives entered a nursing home improved their psychosocial adjustment 23% on average whereas those continuing to live in the community decreased by 8%. Almost half as many relatives entered nursing homes in the counseling group (n = 9 vs. n = 5) but these compared to control group relatives had greater annualized per person expenditures for health and social services (Cdn$23,437 vs. Cdn$15,151). CONCLUSIONS: Caregivers found nurse counseling most helpful. Those indicating infrequent use of logical analysis coping skills showed benefits.