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Objectives: This study identified the classes (i.e., patterns) of caregivers' activities, based on their engagements in caregiving activities, and explored the characteristics and the caregiver burden of these classes., Methods: This study was a secondary analysis of a cross-sectional survey on the profiles of family caregivers of older adults in Hong Kong. A latent class analysis approach was adopted to classify family caregivers (N = 932) according to their routine involvements in 17 daily caregiving activities: 6 activities of daily living (ADLs) and 8 instrumental activities of daily living activities (IADLs) in addition to emotional support, decision making, and financial support. Multinomial logistic regression and multiple linear regression illuminated the characteristics of the classes and compared their levels of caregiver burden., Results: The family caregivers fell into 5 classes: All-Round Care (High Demand, 19.5%), All-Round Care (Moderate Demand, 8.2%), Predominant IADLs Care (High Demand, 23.8%), Predominant IADLs Care (Moderate Demand, 32.5%), and Minimal ADLs and IADLs Care (Low Demand, 16.0%). These classes exhibited different characteristics in terms of care recipients' cognitive statuses and caregiver backgrounds. The levels of caregiver burden differed across classes; the All-Round Care (High Demand) class experienced the highest levels of caregiver burden., Discussion: This study contributes to existing scholarship by turning away from a predefined category of care tasks to explore the patterns of caregiving activities. By identifying caregiving activity patterns and understanding their associated characteristics and caregiver burden, prioritizing and targeting caregiver support interventions better is possible., (© The Author(s) 2020. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Purpose: The purpose of this study was to test the reliability and validity of the Function-Focused Care Checklist for Caregivers using Rasch analysis., Design: This was a descriptive study using data from the study "Testing the Dissemination and Implementation of Function-Focused Care for Assisted Living Using the Evidence Integration Triangle." The study was approved by a university institutional review board., Methods: A Rasch analysis was completed, which included 691 staff-resident observations from 85 assisted living facilities., Findings: There was evidence of internal consistency (alpha coefficient of .93), construct validity except for a high OUTFIT statistic for wheelchair mobility, and hypothesis testing based on an increase in performance of function-focused care by caregivers over 12 months., Conclusions: The findings provided psychometric support for the measure and guidance for revisions., Clinical Relevance: This measure can be used clinically to teach caregivers to provide function-focused care to residents in assisted living., (Copyright © 2020 Association of Rehabilitation Nurses.)

Aims and Objectives: To identify factors associated with the caregiving appraisal of informal caregivers., Background: Caregiving appraisal, the cognitive evaluation of the caregiving situation, is an essential factor in determining positive or negative caregiving outcomes. Identifying factors associated with appraisal is fundamental for designing effective health promotion strategies., Design: A systematic review., Methods: PubMed, EMBASE, CINAHL, PsycINFO, Social Sciences Citation Index, Scopus, CNKI and Wanfang Database were searched for papers published from 1984 to December 2018. Keywords related to informal caregivers' caregiving appraisal were used. Cross-sectional and cohort studies were included. The Quality Assessment and Validity Tool for Correlational Studies, and the CASP Cohort Study Checklist were used for quality assessment. Descriptive and narrative synthesis were used to analyse data. Social ecological model was used for classifying the associated factors into different levels. The PRISMA checklist was followed., Results: Forty studies were included. The quality of the studies was moderate to high. Data were organised into three levels (individual, interpersonal and community level) and categorised into modifiable factors (e.g. patient behavioural problems, caregiver self-efficacy and social support) and nonmodifiable factors (e.g. caregiving duration, gender and education). The majority of studies have investigated the factors at the individual level., Conclusion: There are inconsistencies in the understanding of caregiving appraisal, and consensus is needed for conceptual clarity. Caregiving appraisal is associated with three levels of factors. These modifiable factors provide evidence for designing evidence-based interventions, and the nonmodifiable factors help identify confounding factors in assessment and appraisal., Relevance to Clinical Practice: Nurses are the best-placed healthcare professionals to support informal caregivers. The three levels of associated factors and the interactive approaches provide direction for informing clinical nursing practice. They also provide evidence for healthcare researchers and policymakers to develop interventions and theoretical perspectives and to better allocate healthcare resources., (© 2020 John Wiley & Sons Ltd.)

Background: Family caregivers of patients at the end of life often experience care-related burden. To prevent caregiver burden and to enhance the capacity to provide care it is important to have insight in their support needs. The purpose of this study was to identify profiles of family caregivers who provide care to patients at the end of life at home., Methods: A Q-methodological study was conducted in which family caregivers ranked 40 statements on support needs and experiences with caregiving. Thereafter they explained their ranking in an interview. By-person factor analysis was used to analyse the rankings and qualitative data was used to support the choice of profiles. A set of 41 family caregivers with a variety on background characteristics who currently or recently provided care for someone at the end of life at home were included., Results: Four distinct profiles were identified; profile (1) those who want appreciation and an assigned contact person; profile (2) was bipolar. The positive pole (2+) comprised those who have supportive relationships and the negative pole (2-) those who wish for supportive relationships; profile (3) those who want information and practical support, and profile (4) those who need time off. The profiles reflect different support needs and experiences with caregiving., Conclusions: Family caregivers of patients at the end of life have varying support needs and one size does not fit all. The profiles are relevant for healthcare professionals and volunteers in palliative care as they provide an overview of the main support needs among family caregivers of patients near the end of life. This knowledge could help healthcare professionals giving support.

Objective: evaluate the factors associated with the risk of diabetes mellitus in older caregivers., Method: this is a cross-sectional study conducted with 326 older caregivers enrolled in Family Health Units. Data were collected using a sociodemographic characterization questionnaire, clinical and care information, and the Finnish Diabetes Risk Score to assess the risk of developing diabetes., Results: 35.5% of the caregivers presented a high risk of developing diabetes. The factors associated with the risk of developing diabetes were: use of medication (OR = 3.88), satisfactory or poor health assessment (OR = 1.72), and the fact of being female (OR = 0.48)., Conclusion: more than one third of older caregivers present high risk of developing diabetes. Therefore, being female, living with other people, using medication, and having a poor health assessment are factors associated with increased risk of developing diabetes.

This study aimed to identify the correlation between emotional developments in pre-school children and the caregivers' characteristics. This study employed cross sectional design with cluster sampling technique and involved 206 respondents. The inclusion criteria were mothers of a child aged 3-6 years old and willing to participate in the study. The result showed 42.7% children exhibited deviation in emotional development. There was a significant relationship of mother's education and emotional development in children ( p  = 0.024; α = 0.05). Children of unemployed mothers had higher percentage of emotional deviation compared to working mother, although it was not significantly different ( p  = 0.387; α = 0.05). There was no significant correlation between caregivers and emotional development in children ( p  = 0.102; α = 0.05), child's age and emotional development ( p  = 0.183; α = 0.05), and child's gender and emotional development ( p  = 0.206; α = 0.05). Based on these findings, the stimulation of emotional development should be integrated into the curriculum for pre-school children in order to optimize their development.

ABSTRACTBackground:Acknowledging increasing demand of dementia care for patients in China, this paper aims to understand the training needs of dementia care from the perspectives of mental health providers by examining who should be the trainees, what should be the contents of training, and how to deliver the training in China., Methods: Using purposive sampling, data were gathered via four focus group discussions with 40 mental health providers in Beijing, China, in 2011. Data were transcribed by independent investigators and then translated into English. Researchers used content analysis to separately identify themes and codes. Discrepancies were discussed until final agreement achieved., Results: To improve the quality of dementia care, all participants agreed there is a significant need to train both formal or professional (physicians, nurses, hospital administrators, community workers) and informal caregivers (family, friends, or non-kin hired caregivers). For formal or professional caregivers, suggested training content included clinical knowledge of dementia (i.e. pathogenesis, approaches for preventing dementia deterioration) and clinical practice skills (i.e. diagnostic, treatment, caregiving, counseling, communicating skills). For informal caregivers, basic dementia knowledge and home-based caregiving skills such as safety, restorative, stress management, and communication were identified as key training contents. Multilevel support from the government and community centers were considered crucial factors to delivering the training and educating the public to enhance awareness of dementia., Conclusions: Culturally, sensitive education and specific trainings for formal and informal dementia caregivers are urgently needed in China. Policy and program implications are discussed.

Objective: To propose a care need classification for elderly people by identifying their functional demands., Method: Cross-sectional study carried out in São Paulo, in 2006, with 1,413 elderly (≥ 60 years old), participants in the Health, Well-being and Aging study (SABE - Saúde, Bem Estar e Envelhecimento). For the care need classification, we used the Guttman Scaling method e the frequency of assistance required by the elderly., Results: The hierarchy of activities of daily living had good internal consistency (α = 0.92) and satisfactory coefficients of reproducibility (98%), scalability (84%) and minimum marginal reproducibility (87%). Care need was categorized into: no need (requires no caregiver), minimum need (requires caregiver sporadically), moderate need (requires caregiver intermittently) and maximum need (requires full-time caregiver)., Conclusion: This classification will allow identifying elderly that need assistance in everyday activities and will orientante health professionals in the development of a line of care.

Conditions that cause cognitive impairment and behavioural and personality changes, such as Alzheimer's disease (AD) and related dementia, have global impact across cultures. However, the experience of dementia care can vary between individuals, families, formal caregivers, and social groups from various cultures. Self-reported measures, caregiving stress models, and conceptual theories have been developed to address the physical, financial, psychological, and social factors associated with the experience of dementia care. Given the cross-cultural variability in the experience of dementia care, it is important for such methodologies to take individual and cultural construct systems into account. We contend that personal and group constructs associated with dementia care should be explored in both the formal and informal caregiving contexts. Therefore, in this paper we introduce the theory of Personal Construct Psychology (PCP) with its explicit philosophy, well-elaborated theory, and derived assessment methods as a potential constructivist research approach to examine the personal, familial, group, and cultural construct systems that determine the experience of dementia caregiving. These concepts and assessment procedures are illustrated in this paper through case study examples and scenarios from the context of dementia care with a focus on family home caregivers. This paper elaborates the assessment and therapeutic approaches of personal construct theory (PCT) to further expand alternatives for support services and program interventions and to amplify policies for dementia care within and across cultures.

Background: Self-medication is described as the use of drugs without a physician's prescription to treat self-recognized illness or symptoms, and an important health issue among the elderly. Despite the wide range of different definitions, recognizing all forms of self-medication among older adults, particularly, in developing countries, help healthcare professionals and providers to reduce harmful effects of self-medication. The purpose of this study is to describe the practice of self-medication and its related factors among elderly people in Iran based on the experiences of people who are involved in this phenomenon., Methods: This qualitative study was conducted using content analysis. Purposive sampling was used to select the participants and continued until saturation. The participants were the elderly, their care-givers, physicians, and pharmacists. Data was collected using semi-structured interviews, and analysis was done using an inductive approach. The theory of planned behavior was used as a framework to explain the role of the emerged factors in the occurrence of self-medication behavior., Results: Based on the expressed experiences of the participants, factors related to the practice of self- medication among the elderly in Iran fit in these 5 categories: "patient's attitudes towards disease, treatment, and physicians", "living with disease", "unfriendly environments", "enabling health system", and "influential others"., Conclusions: Based on the results of this study, self-medication of the elderly in Iran has commonalities with many countries in regard to over-the-counter medications and complementary and alternative medicine; however, self-medication is also seen with drugs that require a prescription but can easily be obtained from pharmacies. Contributing factors, apart from the elderly themselves, include their families, caregivers, and social circle, the physical environment where they live, and the health system from which they receive services.

Background: The majority of people with dementia in Germany live at home. These informal care arrangements, which are mostly coordinated by informal carers, are the backbone of home-based dementia care. Creating and maintaining stability is an underlying theme in informal care; however, a definition of the complex phenomenon of 'stability' in this context is still lacking., Aim: The aim was to develop a working definition of stability of home-based care arrangements for people with dementia, which can be applied in current and future research projects at the German Center for Neurodegenerative Diseases in Witten (DZNE Witten) and others., Material and Methods: Ensuing from prior research a preliminary version of the definition was formulated. This definition was discussed in a focus group of scientific experts with expertise in dementia research and care (n = 8). After data analysis using content analysis, the definition was revised during a scientific colloquium (n = 18) and a consensus was finally reached., Results: There were four major themes which were considered by the experts as being relevant for the definition of stability: (1) creating and maintaining stability as a continuous adaptation process, (2) a qualitative component of stability, (3) persons with dementia and informal carers as pivotal players and (4) transitions to residential care., Conclusion: The working definition introduced in this article reflects the authors' understanding of the phenomenon of stability of home-based care arrangements for people with dementia. In times of increasing need for evidence-based interventions it is necessary to develop elaborated definitions of complex phenomena in order to be able to systematically evaluate the efficacy of interventions on the basis of a common understanding.

Background: There are many systematic reviews and meta-analyses (SRs) of interventions for family caregivers of persons with Alzheimer's disease or a related dementia. A challenge when synthesizing the efficacy of dementia caregiver interventions is the potential discrepancy in how they are categorized. The objective of this study was to systematically examine inconsistencies in how dementia caregiver interventions are classified., Methods: We searched Ovid Medline®, Ovid PsycINFO®, Ovid Embase®, and the Cochrane Library to identify previous SRs published and indexed in bibliographic databases through January 2015. Following a graphical network analysis, open-coding of classification definitions was conducted. A descriptive analysis was then completed to examine classification consistency of individual interventions across SR grouping labels., Results: Twenty-three SRs were identified. A graphical network analysis revealed a significant amount of overlap in individual studies included across SRs, but stark differences in how reviews labeled or categorized them. The qualitative content analysis identified seven themes; one of these, content of the intervention, was used to compare classification consistency. When subjecting the classification of interventions to descriptive empirical analysis, extensive inconsistency was apparent., Conclusions: The substantial inconsistency in how dementia caregiver interventions are classified across SRs has hindered the science and practice of dementia caregiver interventions. Specifically, accurate reporting of intervention components and SRs would allow for more precise assessments of efficacy as well as a fuller determination of how caregiver interventions can best yield benefits for caregivers and persons with dementia.

Background: Although caregivers are important in the management of frail, community-dwelling older adults, the influence of different caregiver network types on the risk of adverse healthcare outcomes is unknown., Objective: To examine the association between caregiver type and the caregiver network subtest of The Risk Instrument for Screening in the Community (RISC), a five point Likert scale scored from one ("can manage") to five ("absent/liability"). To measure the association between caregiver network scores and the one-year incidence of institutionalisation, hospitalisation and death., Design: Observational cohort study., Setting and Participants: Community-dwelling adults, aged >65, attending health centres in Ireland, (n=779). PROCEDURE AND MEASUREMENTS: The caregiver network subtest of the RISC was scored by public health nurses. Caregivers were grouped dichotomously into low-risk (score of one) or high-risk (scores two-five)., Results: The majority of patients had a primary caregiver (582/779; 75%), most often their child (200/582; 34%). Caregiver network scores were highest, indicating greatest risk, when patients had no recognised primary caregiver and lowest when only a spouse or child was available. Despite this, patients with a caregiver were significantly more likely to be institutionalised than those where none was required or identified (11.5% versus 6.5%, p=0.047). The highest one-year incidence of adverse outcomes occurred when state provided care was the sole support; the lowest when private care was the sole support. Significantly more patients whose caregiver networks were scored high-risk required institutionalisation than low-risk networks; this association was strongest for perceived difficulty managing medical domain issues, odds ratio (OR) 3.87:(2.22-6.76). Only perceived difficulty managing ADL was significantly associated with death, OR 1.72:(1.06-2.79). There was no association between caregiver network scores and risk of hospitalisation., Conclusion: This study operationalizes a simple method to evaluate caregiver networks. Networks consisting of close family (spouse/children) and those reflecting greater socioeconomic privilege (private supports) were associated with lower incidence of adverse outcomes. Caregiver network scores better predicted institutionalisation than hospitalisation or death.

Purpose: The Carer Experience Scale (CES) is an index measure of the caring experience, focusing on six domains: activities outside caring, support from family and friends, assistance from the government and other organizations, fulfilment from caring, control over caring and getting on with the care recipient. This is an initial study of the construct validity of the CES focusing on validity in a heterogeneous group of carers in the UK., Methods: The CES was included in a cross-sectional quality of life survey conducted in a UK city in 2010. The survey included a number of questions about the characteristics of the carer, care recipient, caring situation and motivation for caring. Hypotheses regarding the anticipated associations between these contextual variables and the caring experience were developed and statistically tested., Results: Seven hundred and thirty carers fully completed the CES questionnaire. Associations between variables hypothesised to relate to the caring experience (such as recipient health and intensity of caring) and the CES were largely as expected, providing evidence that the CES captures the caring experience in a valid way. Most hypothesised associations were statistically significant in both carers of older and younger adults., Conclusions: This study provides early encouraging evidence for the construct validity of the CES instrument. Further investigation is required to examine the validity of the CES in specific clinical subgroups and to examine the responsiveness of the CES in detecting changes in the carer's outcomes over time.

Introduction: Little is known about the sociodemographic and clinical profile of older adults with intellectual disabilities (ID) in Singapore. We studied the sociodemographic and clinical profile of older adults with ID and investigated factors associated with caregiver availability and identity in this population., Materials and Methods: The study population involved all adults with ID aged ≥40 years receiving services from the Movement for the Intellectually Disabled of Singapore (MINDS), the largest such provider in Singapore. Information on sociodemographic and clinical profiles, functional status, and availability of caregivers were collected via interviewer-administered questionnaires from guardians of older adults with ID. Descriptive characteristics were computed and chi-square and logistic regression identifi ed predictors of caregiver availability and identity., Results: Participation was 95% (227/239). There were differences in client age, gender, and caregiver availability between recipients of residential and non-residential services (all P <0.05). Common comorbidities included hyperlipidaemia (17.6%), hypertension (15.9%), psychiatric diagnoses (16.3%) and epilepsy (10.6%). The majority were fully independent in basic activities of daily living, but only 21.1% were fully communicative. Only a small minority (9.4%) were exercising regularly. The majority (73.5%) of clients had a primary caregiver; almost equal proportions relied on either parents or siblings. Older client age was associated independently with the lack of a primary caregiver, independent of greater functional dependence and presence of medical comorbidities in the client., Conclusion: Older adults with ID have multiple medical, functional, and social issues. More can be done to support the care of this unique group of adults with special needs.

This study aimed to classify caregiving families according to the Family Caregivers' Appraisal Checklist (FACL; Horiguchi et al., 2012), which was originally developed to evaluate the probability of continuing caregiving. After nationwide targeting in Japan, the selected survey candidates included 1279 families utilizing domiciliary nursing services chosen by stratified two-stage sampling, and available data were obtained from 945 out of 1020 returned responses (return ratio: 79.8%). Scores for the seven components of FACL were cluster analyzed, and the following six clusters were extracted: Cluster A (12.8%) yielded high scores for all components; Cluster B (34.0%) yielded average scores; Cluster C (20.7%) scored mostly average but low for "quality of care service"; Cluster D (15.8%) showed relatively low scores for all components; Cluster E (11.4%) yielded low scores for all components except for "quality of care service" and "preparedness for emergencies"; and Cluster F (5.3%) scored significantly poorly for all components except for "preparedness for emergencies". Significant intercluster differences were observed for care recipient's age, the number of medical care, employment status, principal caregiver's subjective health, and the advice from family and friends. Caregiving duration was significantly associated with "positive appraisal of family caregiving", the number of medical care and the number of care types, and marginally with the level of care stipulated by the public long-term care insurance program (p < 0.07). Implications of classification of family type according to the FACL and the importance of positive appraisal of caregiving are discussed along with the future direction of use of the FACL.

Aim: The aim of the present study was to evaluate the general and oral health-related quality of life among caregivers of patients with Parkinson's disease., Methods: A representative sample (n = 80, 19 men and 61 women) of caregivers from São José dos Campos, Brazil, answered Oral Health Impact Profile (OHIP-14) and Medical Outcomes Study 36-Item Short Form (SF-36) questionnaires, as well as another questionnaire regarding caregivers' characteristics and caring activities., Results: The OHIP-14 average score was 2.56. The SF-36 average score for the domain of physical function was 87.4; for role-physical function, 85.0; for bodily pain, 62.9; for general health, 76.6; for vitality, 80.0; for social function, 88.4; for role-emotional function, 83.8; and for mental health, 85.3. All domains of the SF-36 also showed negative correlations with OHIP-14 in the entire sample, but this correlation could not be observed among lower educated caregivers. There were significant differences between formal and informal caregivers for OHIP-14 and for the majority of SF-36 domains., Conclusions: Most caregivers were female, the mean scores for SF-36 and OHIP-14 were adequate, and formal caregivers had better results for the SF-36 and OHIP-14 when compared with informal caregivers., (© 2012 Japan Geriatrics Society.)

Mounting evidence shows that low-birth-weight and prematurity are related to serious health problems in adulthood, including increased body fat, decreased fitness, poor bone mineralization, pulmonary problems, and cardiovascular disease. There are data to suggest that increasing physical activity in preterm infants will have effects on short-term muscle mass and fat mass, but we also hypothesized that increasing physical activity early in life can lead to improved health outcomes in adulthood. Because few studies have addressed the augmentation of physical activity in premature babies, the objective of this study was to evaluate the feasibility of whether caregivers (mostly mothers) can learn from nurses and other healthcare providers to implement a program of assisted infant exercise following discharge. Ten caregivers of preterm infants were taught by nurses, along with occupational therapists and other healthcare providers, to perform assisted infant exercise and instructed to conduct the exercises daily for approximately 3 weeks. The researchers made home visits and conducted qualitative interviews to understand the caregivers' experiences with this exercise protocol. Quantitative data included a caregiver's daily log of the exercises completed to measure adherence as well as videotaped caregiver sessions, which were used to record errors as a measure of proficiency in the exercise technique. On average, the caregivers completed a daily log on 92% of the days enrolled in the study and reported performing the exercises on 93% of the days recorded. Caregivers made an average of 1.8 errors on 2 tests (with a maximum of 23 or 35 items on each, respectively) when demonstrating proficiency in the exercise techniques. All caregivers described the exercises as beneficial for their infants, and many reported that these interventions fostered increased bonding with their babies. Nearly all reported feeling "scared" of hurting their babies during the first few days of home exercise but stated that fears were alleviated by practice in the home and further teaching and learning. Caregivers were willing and able to do the exercises correctly, and they expressed a belief that the intervention had positive effects on their babies and on caregiver-infant interactions. These findings have important implications for nursing practice because nurses are in key positions to teach and encourage caregivers to practice these exercises with their newborn babies.

Background: Numerous theoretical models have been developed to explore how caregiving can impact on caregiving outcomes. However, limited attention has been given to the effects of caregivers' motivations for providing care, the meaning they find in caregiving, and the nature of their relationship with the care-recipient. The current study explored the associations between intrinsic and extrinsic motivations, ability to find meaning in caregiving, and pre-caregiving and current relationship quality, and the way in which these variables interact to influence caregiving outcomes., Methods: This was a cross-sectional questionnaire study, in which the respondents were 447 caregivers of people with dementia who were in receipt of a specialist nursing service., Results: The results showed that intrinsic motivations, meaning, and pre-caregiving and current relationship quality were significantly related to each other, while extrinsic motivations were only related to intrinsic motivations and meaning. All these factors were significantly related to caregiving outcomes as measured by caregiver burden, role captivity, and competence., Conclusions: Based on these findings, it is recommended that interventions aimed at reducing caregiving stress should take into account the impact of the quality of the relationship and the caregivers' motivations for providing care. More longitudinal research is needed to explore how meanings, motivations, and relationship quality change over the caregiving career.

Objectives: To introduce supported self-management (SSM) for depression, examine it through the use of a quality assessment framework, and show its potential for enhancing the Canadian health care system., Method: SSM is examined in terms of quality criteria: relevance, effectiveness, appropriateness, efficiency, safety, acceptability, and sustainability. Critical research is highlighted, and a case study is presented to illustrate the use of SSM with depressed patients., Results: SSM is defined by access to a self-management guide (workbook or website) plus encouragement and coaching by health care provider, family member, or other supporter. It has high relevance to depression care in Canada, high cost-effectiveness, high appropriateness for most people with depression, and high safety. Acceptability of this intervention is more problematic: many providers remain doubtful of its acceptability to their poorly motivated patients. Sustainability of SSM as a component of mental health care will require ongoing knowledge exchange among policy-makers, health care providers, and researchers., Conclusion: The introduction of SSM represents a unique opportunity to enhance the delivery of depression care in Canada. Actively engaging the distressed individual in changing depressive patterns can improve outcomes without mobilizing substantial new resources. Over time, we will learn more about making SSM compatible with constraints on provider time, increasing access to self-management tools, and evaluating the benefit to everyday clinical work.

Background: Applied behaviour analysis (ABA) reduces challenging behaviour in people with intellectual disability. There is interest, however, in whether such interventions reduce carer burden and increase community participation in this group., Methods: A 6-month randomised controlled trial was followed by a longer-term naturalistic follow-up of participants. We studied the impact of the challenging behaviour on the carers and on the daily activities of the participants measured by the Carer Uplift and Burden Scale and Guernsey Community Participation and Leisure Assessment respectively., Results: Both community participation and carer burden improved at 6 and 24 months. Burden showed significant reduction in family carers compared with paid carers. There was no significant intervention effect on the variables under consideration., Conclusions: ABA appears to be no more effective than standard care in improving social outcomes in people with intellectual disabilities and challenging behaviour but this requires further examination in a larger trial., (© 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd.)

There are an estimated 5-7 million long-distance caregivers (LDCs) in the United States, but little is known about this growing population. This study reviewed the literature on LDCs and examined 16 identified studies. Although studies defined LDCs differently, a composite description of who LDCs are and what they do is presented. LDCs make substantial contributions in terms of physical, financial, and social support. Distance complicates communication about care recipients' health and care needs, as well as the types of care that can be provided. Related to this, geographic separation can exacerbate care-related stressors. Implications for future research were also identified.

The aim of this study was to examine and identify the psychological, clinical and sociodemographic factors associated with emotional well-being by type of caregiver. A cross-sectional study was conducted among 185 primary caregivers and 92 secondary caregivers of patients with an eating disorder using the Hospital Anxiety and Depression Scale, the Experience of Caregiving Inventory and the Eating Disorders Symptom Impact Scale. According to a multiple regression analysis, a total of four models were obtained accounting for 42%-47% of the variance in emotional well-being. The variable that accounted for most of the variance of emotional well-being in three of the models was the impact of nutrition. Improving aspects of the relationships with the patients reduced anxiety and depression levels in primary caregivers. Similarly, a positive personal experience reduced depression in secondary caregivers. A higher education level was associated with decreased anxiety levels in both types of caregivers. Specific family interventions including both types of caregivers may be useful for providing emotional and adaptive personal coping skills., (Copyright © 2011 John Wiley & Sons, Ltd and Eating Disorders Association.)

Background and Objectives: The satisfaction of the family is essential to the success of home care support services. This study aimed to assess home caregivers' satisfaction with support services and to identify potential factors affecting their satisfaction., Design and Settings: The study was conducted in the Family and Community Medicine Department at Riyadh Military Hospital using cross-sectional design over a period of six months., Patients and Methods: Two hundred forty participants were recruited by systematic random sampling from the division registry. Data were collected through telephone calls using a designed structured interview form. All research ethics principles were followed., Results: The response rate was 76.25%. Most caregivers were patients' sons or daughters. The duration of patients' disabling illnesses varied from less than 1 year to up to 40 years. The majority of caregivers agreed that a home care services team provided the proper healthcare-related support to the patients and improved caregivers' self-confidence in caring for their patients. Overall, on a scale of 100%, the median level of satisfaction was 90%, and 73.2% of caregivers had a satisfaction score of 75% or higher. Increased age, female gender, and more frequent home visits were positive independent factors associated with caregivers' satisfaction scores., Conclusion: Although most caregivers are satisfied with the services provided by a home care support program, there are still areas of deficiency, particularly in physiotherapy, vocational therapy, and social services. The implications are that caregivers need to be educated and trained in caring for their patients and need to gain self-confidence in their skills. The program's administration should improve physiotherapy, vocational therapy, social services, and procedures for hospital referral.

Objective: To estimate the prevalence of home care among older adults and to identify associated factors., Methods: Population-based cross-sectional study including 598 individuals aged > 60 years. Subjects were selected through a two-stage cluster sampling strategy in the city of Pelotas, Southern Brazil, between 2007 and 2008. Home care was defined as a positive answer to the following question: "Do you have someone here in your home to take care of you?" Data on potential associated factors for home care were collected using a standardized questionnaire. Poisson regression models with robust variance were used in the crude and in the adjusted analyses. The analysis took into account the clustering of the sample., Results: The prevalence of home care was 49.5% (95%CI: 44.5;54.5). Among those who have a caretaker, 39.5% reported to be cared for by their spouse, while 4.7% of subjects reported having a professional caretaker. In the adjusted analysis, home care was positively associated with male sex, having a partner, increased age and disability for instrumental activities of daily living. Home care was inversely associated with schooling and physical activity levels., Conclusions: The high prevalence of home care observed may overburden family members responsible for the most of the care provided. These findings are important for the planning of health interventions aimed the assistance of the elderly and their families. Particular attention should be paid to individuals with advanced age, low educational level and with disability for activities instrumental to daily living.

Context: Public policy regarding family caregiving for disabled older adults is affected by their estimated number, their attributes, and the services provided. The available national surveys, however, do not have a uniform approach to ascertaining the number of family caregivers, so their estimated number varies widely., Methods: This article looks at nationally representative, population-based surveys of family caregivers conducted between 1985 and 2010 to find methods pertinent to ascertaining the number of caregivers. The surveys' design, definition of disability, and approach to identifying and defining caregivers of disabled adults aged sixty-five and older were identified, and cross-survey estimates were compared., Findings: Published estimates of the numbers of caregivers of older disabled adults ranged from 2.7 million to 36.1 million in eight national surveys conducted between 1992 and 2009. The surveys were evenly divided between caregivers identified by disabled older adults (n= 4, "disability surveys") and self-identified (n= 4, "caregiver self-identification surveys"). The estimated number of family caregivers of disabled adults aged sixty-five and older was, on average, 4.8 million in disability surveys and 24.4 million in caregiver self-identification surveys., Conclusions: The number of family caregivers of disabled older adults estimated by national surveys varied substantially. Greater consistency in defining caregivers could yield more informative estimates and also advance policy efforts to more effectively monitor and support family caregivers., (© 2010 Milbank Memorial Fund. Published by Wiley Periodicals Inc.)

Background: Pediatric patients with health conditions requiring follow-up typically depend on a caregiver to mediate at least part of the necessary two-way communication with health care providers on their behalf. Health information technology (HIT) and its subset, information communication technology (ICT), are increasingly being applied to facilitate communication between health care provider and caregiver in these situations. Awareness of the extent and nature of published research involving HIT interventions used in this way is currently lacking., Objective: This scoping review was designed to map the health literature about HIT used to facilitate communication involving health care providers and caregivers (who are usually family members) of pediatric patients with health conditions requiring follow-up., Methods: Terms relating to care delivery, information technology, and pediatrics were combined to search MEDLINE, EMBASE, and CINAHL for the years 1996 to 2008. Eligible studies were selected after three rounds of duplicate screening in which all authors participated. Data regarding patient, caregiver, health care provider, HIT intervention, outcomes studied, and study design were extracted and maintained in a Microsoft Access database. Stage of research was categorized using the UK's Medical Research Council (MRC) framework for developing and evaluating complex interventions. Quantitative and qualitative descriptive summaries are presented., Results: We included 104 eligible studies (112 articles) conducted in 17 different countries and representing 30 different health conditions. The most common conditions were asthma, type 1 diabetes, special needs, and psychiatric disorder. Most studies (88, 85%) included children 2 to 12 years of age, and 73 (71%) involved home care settings. Health care providers operated in hospital settings in 96 (92%) of the studies. Interventions featured 12 modes of communication (eg, Internet, intranets, telephone, video conferencing, email, short message service [SMS], and manual downloading of information) used to facilitate 15 categories of functions (eg, support, medication management, education, and monitoring). Numerous patient, caregiver, and health care relevant outcomes have been measured. Most outcomes concerned satisfaction, use, usability, feasibility, and resource use, although behavior changes and quality of life were also reported. Most studies (57 studies, 55%) were pilot phase, with a lesser proportion of development phase (24 studies, 23%) and evaluation phase (11 studies, 11%) studies. HIT interventions addressed several recurring themes in this review: establishing continuity of care, addressing time constraints, and bridging geographical barriers., Conclusions: HIT used in pediatric care involving caregivers has been implemented differently in a range of disease settings, with varying needs influencing the function, form and synchronicity of information transfer. Although some authors have followed a phased approach to development, evaluation and implementation, a greater emphasis on methodological standards such as the MRC guidance for complex interventions would produce more fruitful programs of development and more useful evaluations in the future. This review will be especially helpful to those deciding on areas where further development or research into HIT for this purpose may be warranted.

Objective: To examine the behavioral and emotional problems and their correlates in left-behindchildren (LBC) in the Hunan Province of China., Methods: A sample of 1,274 schoolchildren (48.7% girls; 12.4 +/- 2.2 years old) completed the Strength and Difficulties Questionnaire and their current caregivers completed questionnaires about caregiver/bio-parent's demographics and teachers' involvement with the family., Results: There were 629 (49%) children with a history of being left behind, of which 486 were currently cared for by a relative (RLC) and 41 by a non-relative (NRC). As much as 102 had a past history of being left behind, but were currently living with one or more biological parents at the time of the survey (PLB). A total of 645 (51%) children had no history of being left behind and were included as controls. LBC had significantly more psychopathology and less pro-social behaviors than the controls. These differences, with the exception of more hyperactivity and less pro-social behaviors, disappeared after adjusting for age, education and socioeconomic status of the children, parents/caregivers, and the involvement of the teachers. The psychopathology of LBC was significantly inversely correlated with these variables. Long duration and being left behind at a younger age were significantly associated with more psychopathology. Overall, NRC showed more psychopathology, followed by PLB and then RLC. However, with the exception of pro-social behaviors, after adjusting for demographic variables and duration of being left behind, all differences disappeared., Conclusions: LBC are at risk to develop emotional/behavior problems, particularly if they are left behind early in life, for longer periods, in the care of young caregivers or nonrelatives with poor education and low socioeconomic status, and with less teacher support. Strategies to prevent the development of psychopathology and its amelioration, and governmental policies to decrease the rates of LBC are warranted.

Objective: To compare tuberculosis cure rates among patients supervised by household members or health care workers., Methods: Prospective cohort study of 171 patients treated by the program in Vitoria, Southeastern Brazil, from 2004 to 2007. Each patient was followed-up for six months until the end of the treatment. Of the patients studied, a household member supervised 59 patients and healthcare workers supervised 112 patients. Patients' sociodemographic and clinic data were analyzed. Differences between groups were assessed using chi-square test or Student's t-test. Significance level was set at 5%., Results: Most patients had smear positive, culture confirmed pulmonary tuberculosis. Two patients were HIV-positive. There were more illiterate patients in the healthcare-supervised group, in comparison to those supervised by their families (p=0.01). All patients supervised by a household member were cured compared to 90% of the patients supervised by health care workers (p = 0.024)., Conclusions: Successful tuberculosis treatment was more frequent when supervised by household members.

Background: To develop a community-based model of stroke care, we assessed discharge planning of stroke patients, available resources and continuity of care between hospital and community in a remote rural setting in South Africa. We sought to determine outcomes, family participation and support needs, and implementation of secondary prevention strategies., Methods: Thirty consecutive stroke patients from the local hospital were assessed clinically (including Barthel index and modified Rankin scores) at time of discharge and re-assessed 3 months after discharge in their homes by a trained field worker using a structured questionnaire., Results: Two-thirds of all families received no stroke education before discharge. At discharge, 27 (90%) were either bed- or chair-bound. All patients were discharged into family care as there was no stroke rehabilitation facility available to the community. Of the 30 patients recruited, 20 (66.7%) were alive at 3 months, 9 (30%) had died, and 1 was lost to follow-up. At 3 months, 55% of the remaining cohort were independently mobile compared with 10% at discharge. Of the 20 surviving patients, 13 (65%) were visited by home-based carers. Only 45% reported taking aspirin at 3 months., Conclusions: The 3-month mortality rate was high. Most survivors improved functionally but were left with significant disability. Measures to improve family education and the level of home-based care can be introduced in a model of stroke care attempting to reduce carer strain and reduce the degree of functional disability in rural stroke patients.

Background: Care for people with dementia and their informal caregivers is a challenging aim in healthcare. There is an urgent need for cost-effective support programs that prevent informal caregivers of people with dementia from becoming overburdened, which might result in a delay or decrease of patient institutionalization. For this reason, we have developed the Systematic Care Program for Dementia (SCPD). The SCPD consists of an assessment of caregiver's sense of competence and suggestions on how to deal with competence deficiencies. The efficiency of the SCPD will be evaluated in our study., Methods and Design: In our ongoing, cluster, randomized, single-blind, controlled trial, the participants in six mental health services in four regions of the Netherlands have been randomized per service. Professionals of the ambulatory mental health services (psychologists and social psychiatric nurses) have been randomly allocated to either the intervention group or the control group. The study population consists of community-dwelling people with dementia and their informal caregivers (patient-caregiver dyads) coming into the health service. The dyads have been clustered to the professionals. The primary outcome measure is the patient's admission to a nursing home or home for the elderly at 12 months of follow-up. This measure is the most important variable for estimating cost differences between the intervention group and the control group. The secondary outcome measure is the quality of the patient's and caregiver's lives., Discussion: A novelty in the SCPD is the pro-active and systematic approach. The focus on the caregiver's sense of competence is relevant to economical healthcare, since this sense of competence is an important determinant of delay of institutionalization of people with dementia. The SCPD might be able to facilitate this with a relatively small cost investment for caregivers' support, which could result in a major decrease in costs in the management of dementia. Implementation on a national level will be started if the SCPD proves to be efficient., Trial Registration: NCT00147693.

Aim: To describe sensitive cooperation as a basis for assisted feeding through the experiences of people with high cervical spinal cord injury (hcSCI)., Background: People who contract a complete hcSCI will require lifelong assistance from others with all activities of daily living. Initially, they prefer getting help from people they already know and are reluctant to cooperate with personal assistants. Assisted feeding is a situation where the nature of the cooperation between the two parties involved is crucial., Design: Qualitative., Method: Sixteen people with hcSCI were interviewed twice within a period of eighteen months. The second interview was combined with an observation. Transcriptions of interviews and notes from the observations were analysed according to Reflective Lifeworld Research as described by Dahlberg and colleagues., Results: Sensitive cooperation implies genuine acquaintance and sincere concern for the person receiving help. It takes time to develop and it is not possible for the person who needs help to ask for sensitive cooperation. When a meal has to be based on cooperation with another human being it is no longer adjusted by the inner eating pace and rhythm of the person needing assisted feeding, but has the temporality of the helper as a necessary condition. A particular meal draws on the experiences from all previous meals and is a significant forerunner of future meals., Conclusions: Sensitive cooperation implies genuine acquaintance and sincere concern for the person receiving help. It takes time to develop and it is not possible for the person who needs help to ask for sensitive cooperation. When a meal has to be based on cooperation with another human being it is no longer adjusted by the inner eating pace and rhythm of the person needing assisted feeding, but has the temporality of the helper as a necessary condition. A particular meal draws on the experiences from all previous meals and is a significant forerunner of future meals., Relevance to Clinical Practice: Nurses and other health care professionals working within settings where people with hcSCI are admitted right after the injury have a responsibility to be meticulous when cooperating with the patients during assisted feeding. They create the basis for later cooperation with the personal assistants. Professionals working in institutions must assume that people with hcSCI are vulnerable and that assisted feeding should be carefully scheduled and conducted without interruption. Without this foundation, sensitive cooperation might never happen.

Background: Access to primary care is often a problem for children living in urban areas and the rate of emergency department (ED) use can be high. For acute childhood illnesses, primary care follow-up is often recommended to prevent subsequent ED visits., Methods: We conducted an observational study of 455 children with common childhood illnesses, between 6 weeks and 8 years of age, presenting to 1 of 3 EDs, and discharged to the community. ED physicians recommended that the child visit their primary care physician within 1 to 4 days of discharge (ie, "short-term" follow-up). Caregivers were surveyed during the ED index visit and after discharge to assess primary care follow-up adherence. We collected data on child and caregiver characteristics, type and severity of illness at the ED index visit, and ED return visits in the 2-month period after the ED index visit., Results: A total of 45.3% of caregivers adhered to short-term primary care follow-up. Short-term follow-up adherence was associated with greater ED use for the same illness over the subsequent 2 months (odds ratio = 2.97; 95% confidence interval, 1.31-6.72). Subsequent ED use was greatest for children with short-term primary care follow-up and: (1) prior ED use, (2) single caregivers, (3) mild severity illnesses at the ED index visit, or (4) younger children. ED use after the initial visit did not vary by type of illness or site., Conclusions: There was no evidence that primary care follow-up soon after an ED visit was associated with a lower rate of subsequent ED use for common pediatric illnesses.

Interventions designed to assist informal caregivers who serve individuals at or near the end of life have predominantly focused on caregiving spouses. Can we define other caregiver subpopulations--by intensity of care provided--so as to enable better a) identification of caregiver needs and b) targeting of support to caregivers? The Health Omnibus Survey, an annual face-to-face survey in South Australia, collects health-related data from a representative sample of 4400 households. Piloted questions included in the 2001-2005 Health Omnibus surveys addressed death of a loved one, caregiving provided, impact of caregiving and caregiver characteristics. Of 18,224 respondents, 5302 reported a loved one's death due to terminal illness in the previous 5 years. In all, 502 (10%) provided daily care [5-7 days/week], 619 (12%) provided intermittent care [2-4 days/week] and 425 (8%) provided rare care. Active (daily plus intermittent) caregivers, compared with non-active (rare) caregivers, were more often women (63% vs 50%; P < 0.0001). Daily caregivers were distinguishable from intermittent; daily caregivers were more often widowed (95% vs 7%; P < 0.0001) and >or=60 years (80% vs 64%; P < 0.0001); intermittent caregivers were more commonly children/parents (35%), other relatives (33%), or friends (26%; P < 0.0001) and were better educated, more active in paid work and wealthier. Financial burden, experience at time of death, ability to move on after the death and need for grief support also differed by intensity of caregiving. Caregiver subpopulations can be defined according to intensity of caregiving with distinct demographic features helping to distinguish them.

Purpose: The purpose of this study is to describe current diabetes education practice and specific interventions and responsibilities of diabetes educators in the United States., Methods: The 2008 National Practice Survey (NPS) instrument consisted of 53 items addressing diabetes education program structure, processes and interventions, outcomes and quality improvement activities, and the chronic care model. The survey was hosted online for American Association of Diabetes Educators (AADE) members. Participants totaled 2447 members, constituting a 25% return rate. Data from the 2008 NPS were analyzed and compared with results from previous surveys., Results: Nearly two-thirds of respondents in 2008 provided diabetes education in a single location, most commonly in a clinical outpatient/managed care setting (39%). Most programs provided comprehensive services. Managers noted that 42% of their programs were either cost/revenue neutral or profitable. Programs varied in types of services, number of patient visits, team member functions, time spent on services, and instructional methods used. At least 50% of managers said their programs report outcome data, and 88% participate in quality/performance improvement activities. Nearly two-thirds of respondents were unfamiliar with the AADE-adopted chronic care model., Conclusions: Many 2008 NPS results concur with those obtained in 2005 through 2007. Areas of variability among programs suggest a need for standardized interventions and practice guidelines. Educators are encouraged to report outcomes to elucidate the contributions of their programs to patient care. AADE can use the results and comparative data obtained from the 2008 survey when developing practice, research, and advocacy activities.

Nigeria has an estimated 930,000 AIDS orphans, which has a marked impact on family and community. This study was performed to characterise caregivers' knowledge regarding HIV/AIDS and their attitude towards HIV/AIDS, orphans in general and AIDS orphans in particular. Caregivers and non-caregivers aged 25-70 years in Nigeria were interviewed from January and March 2003, and logistic regression analysis was used to determine associations between caregivers' knowledge regarding HIV/AIDS and attitudes towards HIV/AIDS, orphans and AIDS orphans, and demographic characteristics and background status regarding HIV/AIDS and orphans. A total of 824 interviewees participated in the survey (82.4% response rate), of whom 290 (35.2%) were current caregivers of orphans. The mean number of orphans per current caregiver was 1.8 (standard deviation 1.4). Factors related to higher knowledge level regarding HIV/AIDS were female gender [odds ratio (OR) = 3.49; 95% confidence interval (CI): 2.33, 5.22] and belief that AIDS is a common disease (OR = 3.39; 95% CI: 2.19, 5.26). Factors associated with positive attitudes towards HIV/AIDS, orphans in general and AIDS orphans in particular were age 35-44 years (OR = 1.73; 95% CI: 1.11, 2.69), Koranic schooling (OR = 8.69; 95% CI: 2.42, 31.19), polygamy (OR = 1.76; 95% CI: 1.17, 2.62), belief that there are increasing numbers of orphans in the community (OR = 2.59; 95% CI: 1.32, 5.08) and having relatives or friends with HIV/AIDS (OR = 2.88; 95% CI: 1.61, 1.58). There was a slight correlation (r = 0.17, P < 0.001) between caregivers' knowledge regarding HIV/AIDS and positive attitudes towards HIV/AIDS, orphans and AIDS orphans. Demographic characteristics and personal experience should be taken into consideration to improve attitudes and behaviour related to HIV/AIDS and caring for orphans and AIDS orphans.

Data on both the provision and receipt of informal care among populations of older adults are limited. Patterns of both informal care provided and received by older adults in the Republic of Ireland (RoI) and Northern Ireland (NI) were evaluated. A cross-sectional community-based population survey was conducted. Randomly selected older people (aged 65+, n = 2033, mean age (standard deviation): 74.1 years (6.8), 43% men, 68% response rate) provided information on the provision and receipt of care, its location, and the person(s) who provided the care. Twelve per cent of the sample (251/2033) identified themselves as informal caregivers (8% RoI and 17% NI). Caregivers were more likely to be women, married, have less education and have less functional impairment. Forty-nine per cent (1033/2033, 49% RoI and 48% NI) reported receiving some form of care in the past year. Care recipients were more likely to be older, married, have more functional impairment, and poorer self-rated health. Receiving regular informal care (help at least once a week) from a non-resident relative was the most common form of help received [28% overall (578/2033); 27% RoI and 30% NI]. Five per cent (n = 102/2033) of the sample reported both providing and receiving informal care. Levels of informal care provided by community-dwelling older adults were notably higher than reported in single-item national census questions. The balance of formal and informal health and social care will become increasingly important as populations age. It is essential, therefore, to evaluate factors facilitating or impeding informal care delivery.

Background: With the increase in the number of older adults with dementia, research efforts have focused on increasing community-based support service (CBSS) use to improve older adult and caregiver outcomes. However, the research on factors that may explain CBSS use has been focused on individual characteristics, and how the care recipient and caregiver as a pair influence CBSS use has not been accounted for., Objective: To classify care recipients with dementia and their caregivers who shared similar patterns of CBSS use and to identify predictors of class membership., Methods: Participants were 1,813 elders with dementia and their caregivers from the National Longitudinal Caregiver Study, a cross-sectional dataset from 1998. A latent class analysis was used to identify classes of CBSS users by examining use of caregiver support group, home aide, home health, adult day care, and respite care. Multinomial logistic regression analysis was used to examine relationships between predisposing, enabling, and need variables and class membership., Results: Three classes, that is, Low Users, Adult Day Users, and Home-Based Users, comprised 80%, 10%, and 10% of the sample, respectively. Adult Day Users reported significantly more enabling resources and greater service need. Predictors of home-based use included care recipient age, activities of daily living limitations, number of skilled nursing facilities in the local county, and the extent of caregiver physical limitations from comorbid conditions., Discussion: Using latent class analysis allows identification of specific subtypes of CBSS users, prevalence of user subtype, and risk factors for underutilization. Determining the long-term outcomes of class membership may identify specific groups at risk, which could inform the design of interventions to improve assessment for and delivery of CBSS.

Objective: In a previously published study, the authors conceptualized neuropsychiatric symptoms in Alzheimer disease (AD) patients as distinct symptom profiles with differential outcomes. In the present study, our aim was to further examine the validation of the classification by considering its concurrent validity on caregiver burden., Method: As described previously, neuropsychiatric symptoms, as assessed by the Neuropsychiatric Inventory, in 122 patients with AD were categorized, using cluster analysis. The presence as well as the severity and frequency of symptoms were both used in the classification. After the classification, group differences in caregiver burden, as measured by Screen for Caregiver Burden, were tested using analysis of covariance. The effects of important covariates, such as functional impairment, comorbid medical conditions, parkinsonism, age, and cognitive functioning, were examined., Results: Based on the presence of symptoms, subgroups differed in the level of caregiver distress in that caregivers of the "minimally symptomatic" and the "affective/apathetic" subgroups experienced less distress than the caregivers of the "highly symptomatic" subgroup. Based on the severity and frequency of symptoms, subgroups differed in such a way that caregivers of the "minimally symptomatic" and the "predominantly apathetic" subgroups endorsed less distress than the caregivers of the "affective" and the "highly symptomatic" subgroups., Conclusion: Neuropsychiatric subgroups were able to differentially predict caregiver burden. The findings appear to lend further support to the validity of classifying neuropsychiatric symptoms in AD patients using cluster analysis.

Background: Family members of relatives with eating disorders experience high levels of distress due to the difficulties in their care giving role. However no measures have been developed to measure the specific impact that an individual with an eating disorder has on family life. The aim of this study was to develop a measure to assess the specific caregiving burden of both anorexia nervosa and bulimia nervosa. A secondary aim was to examine whether this measure was sensitive to change., Methods: A new scale, the Eating Disorders Symptom Impact Scale (EDSIS), was generated by a panel of clinicians and researchers based upon quantitative and qualitative work with carers and reviewed by a panel of "expert carers". A cross-sectional study was conducted among carers of relatives with an eating disorder to examine the properties of the new scale. In addition, participants from an ongoing pre-and-post design study completed several self-report questionnaires to assess the sensitivity of the EDSIS to change., Results: A sample of 196 carers of relatives with an eating disorder aged 25-68 compted the scale. A 24-item EDSIS scale was derived with four factors: nutrition, guilt, dysregulated behaviour and social isolation. These explained 58.4% of the variance in carer distress. Reliability was acceptable (Cronbach's alpha ranged from 0.84 to 0.90). The convergent validity of the EDSIS subscales was moderately supported by correlations with a general caregiving measure (Experience of Caregiving Inventory (ECI), r = 0.42 to 0.60), psychological distress (General Health Questionnaire (GHQ-12), r = 0.33) and perceived functioning of the relative (Children Global Assessment Scale (CGAS), r = -30). A sample of 57 primary caregivers completed pre-post intervention assessments and the overall scale (t = 2.3, p < 0.05) and guilt subscale (t = 3.4, p < 0.01) were sensitive to change following a skills training workshop., Conclusion: The EDSIS instrument has good psychometric properties and may be of value to assess the impact of eating disorder symptoms on family members. It may be of value to highlight carers' needs and to monitor the effectiveness of family based interventions.

This study examines the experiences of 609 family, friend, and unrelated caregivers hired directly by clients under a consumer-directed model of home care. Using telephone survey data of clients and workers in California's In-Home Supportive Services program, this research compares outcomes and identifies predictors of caregiving work satisfaction across these three groups. In the total sample, feeling well prepared for the work predicted higher levels of satisfaction, while being Latino/Hispanic (as compared to being White or Black) predicted lower levels of satisfaction. Predictors varied depending on the caregiver's relationship with the client. In particular, friend caregivers who felt prepared were more satisfied than either strangers or family members. Understanding more about caregiver-client relationships and satisfaction is important to future workforce recruitment and retention efforts.

Objectives: To identify and describe the main caregiver of the patients on the heart transplant waiting list; to compare relevant information provided by patients and caregivers, and to classify the caregivers according to their dedication and efficiency in assisting the patient by correlating them to sociodemographic data., Methods: Descriptive study performed from October 2004 to October 2005 at UNIFESP outpatient clinics. The study sample consisted of 21 patients and their caregivers. Data were collected through a structured interview., Results: The main caregiver was a family member (95%), usually the spouse. There were 13 women (81%) and three men (19%). Patient age ranged from 24 to 65 years (mean 44.3). Patients were married (56%); catholic (43.8%); 29% have finished elementary school; 24% have finished high school; 14% have higher education; 68.8% have a regular job; and 81.4% had their own income. All caregivers lived in the same house as the patient. Once a score was established, the caregivers were classified as: "good" - 8 (50%); "regular" - 7 (43.7%); and "bad" 1 - (6.3%). The scores were correlated with education, professional activity, and income without any significant statistical correlation., Conclusion: It is important to determine the instruments to recognize and describe the caregivers. The caregiver is usually a family member (spouse), female, mean age of 44.3 years; has his/her own income and, most of the time, he/she is classified as "good" or "regular", and no correlation was found with education, professional activity and income. Further studies with a larger sample should establish the relationship between the caregiver's role and the heart transplant outcomes.

Aim: To determine who accompanies paediatric dental patients to their appointments, in a teaching hospital setting., Study Design: Data were recorded prospectively for children attending the Paediatric Dentistry clinic of the Charles Clifford Dental Hospital, Sheffield, England, over 4 months which included two school holiday periods. The data were recorded on a standardised data collection sheet, which included age and gender of the patient; number/s of accompanying adults and children and their relationship to the patient; the appointment session and appointment type., Results: A total of 394 paediatric dental visits were recorded. Patients were of a mean age of 10 (range 1-17 years). Most visits were for treatment (44.7%) and review (39.8%), with a much smaller proportion being new patient assessments (8.9%) and emergency appointments (6.6%). The numbers of afternoon and morning sessions recorded were approximately similar and 35% of the visits were recorded in a school holiday day. The majority of patients attended with at least one parent (91.6%). A parent was most likely to attend a new patient assessment (97.1%) or review visit (94.3%). Parental presence was less likely for treatment (89%) and least likely for emergency visits (84%). Most patients attended with their mother (62.1%). Patients were less frequently accompanied by parents (13.1%), their father (12.1%) and one or both grandparents (4.3%). Smaller proportions were accompanied by older siblings, a step parent, other relatives or foster carers. Two patients attended unaccompanied. The time of day, or whether it was a school holiday period or not, did not influence parental presence or the numbers of adults accompanying patients. However the additional presence of other children (non patients) was more likely on morning sessions and during school holidays., Statistics: One way analysis of variance (ANOVA), an independent sample t-test or chi-squared tests were undertaken as appropriate to determine whether there were any significant differences in parental or child accompaniment according to the patient's age; gender; type of appointment or time of appointment. Significance levels were set at p<0.05., Conclusions: It was of concern that a parent was least likely to accompany a child for an emergency visit when a history and consent may assume the greatest importance.

The study investigates the occurrence and character of skepticism and resistance towards ethnic minority care workers among older care recipients in a municipality in Sweden. Twelve representatives of caregiver organizations were interviewed about their experience of this phenomenon. Three additional interviews were conducted with ethnic minority care workers. Representatives described the problem as rare and mostly occurring as language difficulties or as a temporary problem characterized as a fear of the unknown among some care recipients. They tended to apply a pragmatic or pathologizing approach when talking about causes of and solutions to the problem. These approaches enabled care providers to comply with "potential racism" without challenging an official ideology of anti-racism. In contrast, staff of foreign descent described the problem as more frequent and severe, particularly for short-term employees who experience many first-time encounters with care recipients.

Background: Africa is in an orphan-care crisis. In Zimbabwe, where one-fourth of adults are HIV-positive and one-fifth of children are orphans, AIDS and economic decline are straining society's ability to care for orphans within their extended families. Lack of stable care is putting thousands of children at heightened risk of malnourishment, emotional underdevelopment, illiteracy, poverty, sexual exploitation, and HIV infection, endangering the future health of the society they are expected to sustain., Methods: To explore barriers and possible incentives to orphan care, a quantitative cross-sectional survey in rural eastern Zimbabwe asked 371 adults caring for children, including 212 caring for double orphans, about their well-being, needs, resources, and perceptions and experiences of orphan care., Results: Survey responses indicate that: 1) foster caregivers are disproportionately female, older, poor, and without a spouse; 2) 98% of non-foster caregivers are willing to foster orphans, many from outside their kinship network; 3) poverty is the primary barrier to fostering; 4) financial, physical, and emotional stress levels are high among current and potential fosterers; 5) financial need may be greatest in single-orphan AIDS-impoverished households; and 6) struggling families lack external support., Conclusion: Incentives for sustainable orphan care should focus on financial assistance, starting with free schooling, and development of community mechanisms to identify and support children in need, to evaluate and strengthen families' capacity to provide orphan care, and to initiate and support placement outside the family when necessary.

Although the largest minority population in the United States, Hispanics are under-represented in hospice at the national level. The study purpose was to document Hispanic access to hospice services in an environment where Hispanics are a majority population. The framework for the study was Aday and Anderson's model for access to medical care. In this framework, access is not defined as availability of services and resources, but whether services are actually used by the people who need them. We completed retrospective chart reviews of 500 Medicare beneficiaries who died in four hospices. Study variables were decedent characteristics and access to hospice and hospice disciplines. Results showed that Hispanics and whites differed on characteristics known to influence access to health services, e.g., preferred language and type of caregiver Although the proportion of Hispanic elders dying in hospice was less than the proportion living in the community, the proportions of Hispanic elders who died in the community or died in their homes were not differentfrom the proportion that died in hospice. When access to hospice disciplines was compared between Hispanic and white decendents, the results showed one difference-more whites than Hispanics had access to volunteer services. Overall, the study showed that Hispanics were not underrepresented in hospice, and they had equal access to hospice disciplines. These findings differ from national data and may be associated with Hispanics being the majority population in the community. To learn how population dominance influences minority access to services, Hispanic access to hospice could be studied in locales with varying proportions of Hispanics in the population.

Outcome expectations have received little study in physical activity (PA) research. This study examined whether initial outcome expectations and their achievement at 6 months (i.e. outcome realizations) predicted subsequent PA participation (7-12 months) in 118 older women. Initial outcome expectations were not associated with PA participation. Outcome realizations at 6 months, however, predicted subsequent PA participation (p < .05). Women with high expectations but low attainment had the lowest subsequent participation rates. Women with high attainment, regardless of expectations, had the highest rates. Findings replicate and extend an earlier study and argue for a more dynamic conceptualization of outcome expectations.

Background: Patients with end-stage heart failure experience disability, dyspnea, pain, and suffering at the end of life despite progress in treatment approaches. Little is known about the patients with heart failure in hospice and the impact of hospice care on health-related outcomes., Methods and Results: The purposes of this retrospective, descriptive chart review were to (1) describe the characteristics of patients who receive hospice care, (2) identify symptoms most commonly reported by patients with heart failure in hospice during the last 7 days of life, and (3) identify interventions used by hospice nurses to manage the symptoms. The majority of the patients were women, widowed, and white. Median length of stay was 10 days. Nearly 37% of the patients were admitted to hospice during the last week of life. Primary symptoms at admission for hospice care included dyspnea, confusion at least some of the time, and poor appetite. There was no statistically significant difference in symptoms between the day of admission for hospice care and the day of death. Symptom management strategies included oxygen, family reassurance or education, skin care, and patient education. Medications commonly used to relieve symptoms included antianxiety medications, morphine, and/or other narcotics. Although mainstay heart failure drugs had been prescribed for some patients, prescription rates were low and not in line with current guideline recommendations, nor were those medications recorded as being used for symptom management., Conclusion: Further research including prospective study is needed to clearly articulate the impact of hospice care on patients and families affected by heart failure.

Introduction: Childhood injuries are the leading cause of death for children between 5 to 14 years of age in Singapore. There have been no studies done on primary caregivers' knowledge, attitude and practices on childhood injuries and its prevention in Singapore. Thus there is a need to conduct this type of study in order to develop appropriate educational programmes., Methods: A cross-sectional nationwide study with a two-stage stratified random sampling was conducted to obtain a representative sample of the Singapore population. Families that had children younger than 15 years of age were selected for the study. Parents and caregivers were interviewed at their homes., Results: The primary caregivers had good knowledge of road safety but poor knowledge on home safety and first aid. The higher the education of the mother, the more likely it is that she would possess the correct knowledge and practice on childhood injuries and its prevention. The media plays an important role on information on child safety of the caregivers. Only 38 percent said they obtained information from doctors and other health personnel., Conclusion: There is a need to educate parents and caregivers on home safety and first aid. Doctors and nurses should take a more active role in giving advice on child safety.

Purpose: The formal-informal dichotomy of home care, which has been a theoretical framework in quantitative and qualitative research, might not be descriptive of older persons' views about their home-care providers. This qualitative study explores the perspectives of older women about the characteristics of their home-care providers., Design and Methods: Three interviews were conducted with each of 25 women (aged 80-94 years) during the first 4 months of participation in a 3-year phenomenological study. The women described their helpers. We differentiated helper types on the basis of the nature of the help, and we explored variations in compensation arrangements., Results: We delineated a new typology of home-care helpers: regular helpers, on-call helpers, can-will doers, and mainstays., Implications: When home-care helpers are categorized by type of assistance provided, the potential value of their efforts is more evident. The association of formal care with paid help and informal care with nonpaid help limits the effectiveness of the dichotomy as a basis for home-care-payment policies. The new home-care-helper typology cuts across the dimensions of the dichotomy, providing an alternative theoretical framework for further research.