Advances in the conceptualization and measurement of Health Care Empowerment: development and validation of the Health Care Empowerment inventory.
ABSTRACT: The Health Care Empowerment Model offers direction for the investigation of patient-controlled engagement and involvement in health care. At the core of the model is the construct of Health Care Empowerment (HCE), for which there exist no validated measures. A set of 27 candidate self-report survey items was constructed to capture five hypothesized inter-related facets of HCE (informed, engaged, committed, collaborative, and tolerant of uncertainty). The full item set was administered to 644 HIV-infected persons enrolled in three ongoing research studies. Exploratory and confirmatory factor analyses resulted in a two factor solution comprising four items each on two subscales: (1) HCE: Informed, Committed, Collaborative, and Engaged HCE ICCE) and (2) HCE Tolerance of Uncertainty (HCE TU). Subscale scores were evaluated for relationships with relevant constructs measured in the three studies, including depression, provider relationships, medication adherence, and HIV-1 viral load. Findings suggest the utility of this 8-item Health Care Empowerment Inventory (HCEI) in efforts to measure, understand, and track changes in the ways in which individuals engage in health care.
Project description:OBJECTIVES:To explore the perceptions of parents of pediatric patients in a PICU regarding real-time open electronic health record data displayed in patient rooms. DESIGN:Cross-sectional qualitative interview study. SETTING:PICU in a large Midwestern tertiary-care children's hospital. SUBJECTS:Parents of patients in a PICU (n = 33). MEASUREMENTS AND MAIN RESULTS:Qualitative data were collected through in-person semi-structured, individual, and small-group interviews. Data were collected from March 2016 to July 2016, with approval from the study hospital's institutional review board. Data were analyzed using inductive thematic analysis. Results included positive effects of accessing real-time open electronic health record data on family empowerment, situation awareness, potential error detection, understanding of medical data, and facilitating discussions during rounds. Concerns were reported regarding privacy of information as well as potential misinterpretation of displayed data. We identified several ways to improve this collaborative technology to make it more family-centered. CONCLUSIONS:This study suggests that a new health information technology system providing continuous access to open electronic health record data may be an effective way to empower and engage parents in the PICU, but potential drawbacks were also noted. The results also provide insights into the collaborative use of health information technology in the PICU setting.
Project description:Chronic obstructive pulmonary disease (COPD) is a serious health problem that has significant effects on the life status of elderly persons. Use of the empowerment approach is necessary for health promotion in older people with COPD, but little attention has so far been paid to all the dimensions of empowerment in the management of COPD, which would provide useful knowledge regarding elders with COPD. This article reports on a study exploring people's experiences of the empowerment of older people with COPD. This study adopted an exploratory qualitative design and was carried out using grounded theory methodology. Grounded theory was considered appropriate for this study because of its focus on how people respond to and act on the problems that they encounter. We collected data by conducting in-depth semi-structured interviews and taking field notes. Twenty-four participants were selected through purposive sampling. The results showed that in encountering the complexity of disease and in response to difficulties induced by COPD, three strategies were applied. Elderly persons with COPD, their family caregivers, and professional team members engaged in "managing life with COPD," "striving to keep abreast of life," "preparing for battle with disease," and "helping to stabilize the elder's life." The outcome of these strategies was "co-existence with disease." The potential of "managing life with COPD" was influenced by the following factors: "co-existence with ageing," "personal potential," "a challenged health system," and "weak social support." "Managing life with COPD" enables the elder to feel in control and live optimally. This is a fragile balance, however, and the unpredictability of COPD can tip the elder into "self-efficacy." Understanding the experiences of the empowerment process of older people with COPD can help health professionals provide more focused elderly care.
Project description:Although women's empowerment has gained attention over the last two decades, our understanding of the associations between different dimensions of women's empowerment and different children's health outcomes is limited. This study aims to measure the extent of women's empowerment and to examine its associations with the children's health status in Ethiopia. Data were obtained from the 2016 Ethiopian Demographic and Health Survey (EDHS). The sample is restricted to a sub-sample of 10,641 women from 15 to 49 years old and their children under the age of five years. We used children's height-for-age and weight-for-height Z-scores and pneumonia and anemia experience as indicators of children's health outcome. Women's empowerment is measured by five indices reflecting their participation in decision-making, attitudes towards wife-beating by husband, barriers to health care access, asset ownership, and socio-economic variables. These indicators of empowerment were constructed using exploratory and confirmatory factor analysis. A Multiple Indicators Multiple Causes (MIMIC) model was employed to examine the relationship between women's empowerment and latent child health outcomes, after controlling for relevant covariates. Results suggests that enhancing women's empowerment in the household in terms of their socio-economic status (i.e., increasing women's access to education, information, media, and promoting saving) was associated with less likelihood of the children's being stunted or wasted (p<0.05). Higher women's empowerment in terms of household decision-making power were also associated with better children's health status measured by the children's experience of pneumonia and anemia (p<0.05). All aspects of women's empowerment are not related with children's health indicators. Women's empowerment dimensions related with child health have a varying degree of association with the different children's health indicators. Gender-specific policies focusing on increasing women's access to education, media, information, and promoting saving and their participation in the household decision making are some of the strategies for improving their children's health and wellbeing.
Project description:Little is known about the psychosocial profiles of parents who have a child with an undiagnosed chronic illness. The National Institutes of Health Undiagnosed Diseases Network (UDN) evaluates individuals with intractable medical findings, with the objective of discovering the underlying diagnosis. We report on the psychosocial profiles of 50 parents whose children were accepted to one of the network's clinical sites. Parents completed questionnaires assessing anxiety, depression, coping self-efficacy, and health care empowerment at the beginning of their child's UDN clinical evaluation. Parents of undiagnosed children had high rates of anxiety and depression (~?40%), which were significantly inversely correlated with coping self-efficacy, but not with health care empowerment. Coping self-efficacy, depressive, and anxiety symptoms were better in parents with older children and with longer duration of illness. Gender differences were identified, with mothers reporting greater health care engagement than fathers. Overall, our findings suggest that parents of children with undiagnosed diseases maintain positive coping self-efficacy and remain actively engaged in health care and to a lesser degree tolerance for uncertainty, but these come with a high emotional cost to the parents. As the parents' psychological needs may not be obvious, these should be ascertained and the requisite support provided.
Project description:The increasing presence of technology in health care has created new opportunities for patient engagement and with this, an intensified exploration of patient empowerment within the digital health context. While the use of technology, such as patient portals, has been positively received, a clear linkage between digital health solutions, patient empowerment, and health outcomes remains elusive.The primary objective of this research was to explore the views of participants enrolled in an electronic health record portal access trial regarding the resultant influence of this technology on their feelings of patient empowerment.The exploration of patient empowerment within a digital health context was done with participants in a tethered patient portal trial using interpretive description. Interpretive description is a qualitative methodology developed to pragmatically address clinical health questions. Patient demographics, self-reported health status, and self-identified technology adaptation contributed to the assessment of empowerment in this qualitative approach.This research produced a view of patient empowerment within the digital health context summarized in two overarching categories: (1) Being Heard and (2) Moving Forward. In each of these, two subcategories further delineate the aspects of empowerment, as viewed by these participants: Knowing More and Seeing What They See under Being Heard, and Owning Future Steps and Promoting Future Care under Moving Forward. This work also highlighted an ongoing interconnectedness between the concepts of patient empowerment, engagement, and activation and the need to further articulate the unique aspects of each of these.The results of this study contribute needed patient voice to the ongoing evolution of the concept of patient empowerment. In order to move toward more concrete and accurate measure of patient empowerment and engagement in digital health, there must be further consideration of what patients themselves identify as essential aspects of these complex concepts. This research has revealed relational and informational elements as two key areas of focus in the ongoing evolution of patient empowerment operationalization and measure.
Project description:Background:This paper reports on the process of involving former and current cancer patients and carers as co-researchers in a Danish mixed methods research project on patient empowerment of cancer patients in follow up (The Empowerment study 2015-2019). User-Involvement in health care research is a relatively new practice in Denmark and the Empowerment project was one of the first to systematically involve patients and carers in its research design, conduct and reporting. The paper has two aims: first, it provides a detailed account of the process of involving co-researchers in the Empowerment project and second, it presents findings from a workshop held with academic researchers and co-researchers on the project to discuss their experiences and recommendations for user-involvement in the Danish context. Methods:The Empowerment project adopted a consultative and collaborative approach to user involvement and co-researchers were involved from the early stages and all through the project. Users gave feedback on the proposal, helped develop project documents and research tools, acted as peer interviewers in qualitative interviews, participated in data analysis and development of questionnaires, and co-authored journal articles. The workshop held with the academic researchers and co-researchers consisted of two parallel focus groups and a joint group discussion, following an interactive and informal format to facilitate discussion and exchange of ideas. Findings:The focus group resulted in eleven recommendations for the further development of user-involvement in Denmark. Key issues encountered were the general lack of guidelines on user-involvement in the Danish context and the need for more organisational support. Particular issues, such as payment, recruitment and training, need to be carefully considered within individual projects and within the national context in which projects are carried out. Conclusion:The paper adds to the current very limited knowledge base on user-involvement in the Danish context and provides a set of early recommendations for the further development of the practice in Danish Health Research. User-involvement needs to be developed with consideration to the local context, but common challenges also emphasise the usefulness of cross-country comparisons and knowledge exchange.
Project description:Patient empowerment is viewed by policy makers and health care practitioners as a mechanism to help patients with long-term conditions better manage their health and achieve better outcomes. However, assessing the role of empowerment is dependent on effective measures of empowerment. Although many measures of empowerment exist, no measure has been developed specifically for patients with long-term conditions in the primary care setting. This study presents preliminary data on the development and validation of such a measure.We conducted two empirical studies. Study one was an interview study to understand empowerment from the perspective of patients living with long-term conditions. Qualitative analysis identified dimensions of empowerment, and the qualitative data were used to generate items relating to these dimensions. Study two was a cross-sectional postal study involving patients with different types of long-term conditions recruited from general practices. The survey was conducted to test and validate our new measure of empowerment. Factor analysis and regression were performed to test scale structure, internal consistency and construct validity.Sixteen predominately elderly patients with different types of long-term conditions described empowerment in terms of 5 dimensions (identity, knowledge and understanding, personal control, personal decision-making, and enabling other patients). One hundred and ninety seven survey responses were received from mainly older white females, with relatively low levels of formal education, with the majority retired from paid work. Almost half of the sample reported cardiovascular, joint or diabetes long-term conditions. Factor analysis identified a three factor solution (positive attitude and sense of control, knowledge and confidence in decision making and enabling others), although the structure lacked clarity. A total empowerment score across all items showed acceptable levels of internal consistency and relationships with other measures were generally supportive of its construct validity.Initial analyses suggest that the new empowerment measure meets basic psychometric criteria. Reasons concerning the failure to confirm the hypothesized factor structure are discussed alongside further developments of the scale.
Project description:BACKGROUND:The postpartum period is an important period for preventive strategies as common maternal and child health risks may become manifest. Women with a lower socioeconomic status tend to have lower maternal empowerment. Increasing their risks of adverse maternal and child health outcomes. This study aims to assess the effectiveness of a primary care level intervention. Delivered to maternity care assistants, aiming to increase maternal empowerment postpartum. METHODS:This study is part of the Dutch nationwide "Healthy Pregnancy 4 All-2" (HP4All-2) program, which aims to identify vulnerable mothers and young children at risk of adverse health outcomes, and subsequently improve their care. This program targets women from deprived neighborhoods. A pragmatic cluster randomized controlled trial will be undertaken in 12 maternity care organizations. Maternity care organizations in urban municipalities (i.e. the clusters) will be randomized to either a systematic risk assessment during pregnancy with emphasis on identification of non-medical risk factors for adverse maternal and neonatal health outcomes, and subsequent adaptation of care towards a client-tailored approach during pregnancy and the postpartum period, or solely the systematic risk assessment. The primary outcome is the prevalence of a low maternal empowerment score postpartum. Secondary maternal outcomes cover health-related quality of life, postnatal depression, smoking, alcohol consumption, illicit drug use. Finally, maternal and neonatal health care utilization postpartum are recorded. All outcomes will be analyzed according to the intention-to-treat principle, using multi-level mixed effects models. DISCUSSION:The study will contribute to evidence regarding the effectiveness of client-tailored, risk-based maternity care to increase maternal empowerment postpartum. TRIAL REGISTRATION:Netherlands Trial Registry (NTR) 6311 , registered 03-27-2017.
Project description:Providers and healthcare organizations have begun recognizing the importance of patient empowerment as a driver of patient-centered care. Unfortunately, most studies have investigated empowerment with single diseases. Identifying factors of empowerment across conditions and populations would enable a greater understanding of this construct.The purpose of this study was to understand empowerment in relation to health information-seeking, interactions with providers and peers, and healthcare access in chronic disease patients. This study also sought to identify key empowerment factors and their association with patient characteristics.Participants were recruited through PatientsLikeMe, an online research platform where patients share their personal and medical history data. Patients completed an online survey that assessed self-reported health behavior (e.g. knowledge-seeking, experiences with healthcare providers, and peer interactions) and healthcare access. An exploratory factor analysis identified key empowerment domains. Domain level sum scores and sum of all domains (total score) were compared across patient characteristics and diseases.Overall, 3988 participants were included in the study, with the majority actively involved in their healthcare, but many cited difficulties with matching their treatment goals with those of their physician (34 %) and spending sufficient time with the physician (36 %). Factor analysis identified two domains-Positive Patient-Provider Interaction, and Knowledge and Personal Control-that explained >60 % of the overall variance in the observed variables. Mean total empowerment scores for patients with a primary complaint of Parkinson's disease (61.8) and multiple sclerosis (60.3) were significantly greater than fibromyalgia (55.3) and chronic fatigue syndrome (54.8). Patients who were older, male, more educated, and insured also reported significantly greater levels of empowerment.The two domains of empowerment identified in this study are consistent with previous studies, but the differences in empowerment levels across diseases suggest a need for further studies on disease-related attributes of empowerment. Future research should examine the pathways for empowerment, as well as the relationship between empowerment domains and clinical outcomes.
Project description:BACKGROUND:In managing a life with coronary heart disease and the possibility of planning and following a rehabilitation plan, patients' empowerment and self-efficacy are considered important. However, currently there is limited data on levels of empowerment among patients with coronary heart disease, and demographic and clinical characteristics associated with patient empowerment are not known. The purpose of this study was to assess the level of patient empowerment and general self-efficacy in patients six to 12 months after the cardiac event. We also aimed to explore the relationship between patient empowerment, general self-efficacy and other related factors such as quality of life and demographic variables. METHODS:A sample of 157 cardiac patients (78% male; age 68?±?8.5 years) was recruited from a Swedish hospital. Patient empowerment was assessed using the SWE-CES-10. Additional data was collected on general self-efficacy and well-being (EQ5D and Ladder of Life). Demographic and clinical variables were collected from medical records and interviews. RESULTS:The mean levels of patient empowerment and general self-efficacy on a 0-4 scale were 3.69 (±0.54) and 3.13 (±0.52) respectively, and the relationship between patient empowerment and general self-efficacy was weak (r?=?0.38). In a simple linear regression, patient empowerment and general self-efficacy were significantly correlated with marital status, current self-rated health and future well-being. Multiple linear regressions on patient empowerment (Model 1) and general self-efficacy (Model 2) showed an independent significant association between patient empowerment and current self-rated health. General self-efficacy was not independently associated with any of the variables. CONCLUSIONS:Patients with a diagnosis of coronary heart disease reported high levels of empowerment and general self-efficacy at six to 12 months after the event. Clinical and demographic variables were not independently associated with empowerment or low general self-efficacy. Patient empowerment and general self-efficacy were not mutually interchangeable, and therefore both need to be measured when planning for secondary prevention in primary health care. TRIAL REGISTRATION:NCT01462799 .