Profiles of family caregivers of patients at the end of life at home: a Q-methodological study into family caregiver' support needs.

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.

Factors associated with caregiving appraisal of informal caregivers: A systematic review.

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.

Training needs for dementia care in China from the perspectives of mental health providers: who, what, and how.

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.

Consistency of dementia caregiver intervention classification: an evidence-based synthesis.

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.

Self-medication among the elderly in Iran: a content analysis study.

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.

[Stability of home based care arrangements for people with dementia : Development of a consensus definition of stability using expert focus groups]. / Stabilität von häuslichen Versorgungsarrangements für Menschen mit Demenz : Entwicklung und Konsentierung einer Definition von Stabilität durch Expertenfokusgruppen.

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.

Assessment of Caregiving Constructs: Toward a Personal, Familial, Group, and Cultural Construction of Dementia Care through the Eyes of Personal Construct Psychology.

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.

An investigation into the construct validity of the Carer Experience Scale (CES).

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.

Feasibility of a caregiver-assisted exercise program for preterm infants.

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.

Supported self-management: a simple, effective way to improve depression care.

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.

The impact of relationships, motivations, and meanings on dementia caregiving outcomes.

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.

Brief report: impact of applied behaviour analysis (ABA) on carer burden and community participation in challenging behaviour: results from a randomised controlled trial.

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.

Factors associated with emotional well-being in primary and secondary caregivers of patients with eating disorders.

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.

Long-distance caregiving: a systematic review of the literature.

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 Patterns of Caregiving Activities for Family Caregivers of Older Adults in Hong Kong: An Exploratory Latent Class Analysis.

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.

Reliability and Validity of the Function-Focused Care Checklist for Caregivers.

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.

Cross-survey differences in national estimates of numbers of caregivers of disabled older adults.

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.

Emotional and behavioral problems of Chinese left-behind children: a preliminary study.

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.

Health information technology to facilitate communication involving health care providers, caregivers, and pediatric patients: a scoping review.

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.

Caregiver adherence to follow-up after an emergency department visit for common pediatric illnesses: Impact on future ED use.

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.