Wendy R. Miller

Chronic disease self-management: A hybrid concept analysis

BACKGROUND Chronic diseases require chronic disease self-management (CDSM). Existing CDSM interventions, while improving outcomes, often do not lead to long-lasting effects. To render existing and new CDSM interventions more effective, an exploration of the concept of CDSM from both the literature and patient perspectives is needed. The purpose of this study was to describe the current conceptualization of CDSM in the literature, identify potential inadequacies in this conceptualization based on a comparison of literature- and patient-based CDSM descriptions, and to offer a more comprehensive definition of CDSM. METHODS A hybrid concept analysis was completed. DISCUSSION In the literature, CDSM is defined as behaviors influenced by individual characteristics. Patients in the fieldwork phase discussed aspects of CDSM not well represented in the literature. CONCLUSIONS CDSM is a complex process involving behaviors at multiple levels of a persons environment. Pilot work to develop and test CDSM interventions based on both individual and external characteristics is needed.

Qualitative research findings as evidence: utility in nursing practice.

Background—The use of qualitative research methods in nursing research is common. There is a need for Clinical Nurse Specialists (CNSs) to become informed regarding how such qualitative findings can serve as evidence for nursing practice changes. Purpose—To inform CNSs of the meaning and utility of qualitative research findings. Implications for qualitative research findings as evidence in nursing practice are particularly discussed.

Finding the Patient's Voice Using Big Data: Analysis of Users' Health-Related Concerns in the ChaCha Question-and-Answer Service (2009-2012).

Background The development of effective health care and public health interventions requires a comprehensive understanding of the perceptions, concerns, and stated needs of health care consumers and the public at large. Big datasets from social media and question-and-answer services provide insight into the public’s health concerns and priorities without the financial, temporal, and spatial encumbrances of more traditional community-engagement methods and may prove a useful starting point for public-engagement health research (infodemiology). Objective The objective of our study was to describe user characteristics and health-related queries of the ChaCha question-and-answer platform, and discuss how these data may be used to better understand the perceptions, concerns, and stated needs of health care consumers and the public at large. Methods We conducted a retrospective automated textual analysis of anonymous user-generated queries submitted to ChaCha between January 2009 and November 2012. A total of 2.004 billion queries were read, of which 3.50% (70,083,796/2,004,243,249) were missing 1 or more data fields, leaving 1.934 billion complete lines of data for these analyses. Results Males and females submitted roughly equal numbers of health queries, but content differed by sex. Questions from females predominantly focused on pregnancy, menstruation, and vaginal health. Questions from males predominantly focused on body image, drug use, and sexuality. Adolescents aged 12–19 years submitted more queries than any other age group. Their queries were largely centered on sexual and reproductive health, and pregnancy in particular. Conclusions The private nature of the ChaCha service provided a perfect environment for maximum frankness among users, especially among adolescents posing sensitive health questions. Adolescents’ sexual health queries reveal knowledge gaps with serious, lifelong consequences. The nature of questions to the service provides opportunities for rapid understanding of health concerns and may lead to development of more effective tailored interventions.

Patient-centered outcomes in older adults with epilepsy

PURPOSE Older adults have the highest incidence of new-onset epilepsy, yet there is a lack of self-management interventions to ensure that this population achieves desirable outcomes. In order to develop patient-centered interventions for older adults with epilepsy, self-management outcomes of importance to these patients must first be explored. The purpose of this study was to describe what outcomes older adults diagnosed with epilepsy late in life hope to achieve in self-managing their condition. METHOD Qualitative description was used. 20 older adults took part in semi-structured interviews. Data were analyzed using conventional content analysis. RESULTS Six themes emerged - Maintaining Normalcy, We Want to be Involved, Well-Equipped, Seizure Freedom, Fitting Epilepsy in with Other Conditions, Incongruence with Provider Goals. CONCLUSION These results add to the extant literature, and provide knowledge on which patient-centered epilepsy self-management interventions can be developed. In addition, these results can inform the development of a patient-centered outcome measure for older adults with epilepsy. Such a measure could be used in conjunction with existing measures related to disease status (seizure frequency, etc.) to ensure that outcomes pertinent to both patients and providers are targeted and measured.

Problems, needs, and useful strategies in older adults self-managing epilepsy: Implications for patient education and future intervention programs☆

OBJECTIVE The purpose of this study was to determine, in a sample of older adults diagnosed with epilepsy, perceived self-management problems and needs encountered since diagnosis, as well as strategies used to address problems and needs. METHODS Qualitative description was used. Twenty older adults engaged in face-to-face interviews. Interviews were analyzed via content analysis. RESULTS Participants reported problems, needs, and strategies in six categories: Information, Physical and Emotional Symptoms, Memory and Concentration, Medications, Commitments, and Relationships. CONCLUSION Participants noted some problems and needs previously documented in the literature, though current results have built upon extant literature to reveal etiologies of and contexts surrounding problems and needs; new findings were also revealed. This knowledge can be used by health-care providers in counseling and educating older adults with epilepsy and can inform formal self-management interventions. PRACTICE IMPLICATIONS Determining needs from the patients perspective is consistent with todays focus on patient-centered care. Current findings have led to an organizing framework for problems and needs of older adults with epilepsy. More research is needed to develop the framework so that it can serve as a template for an intervention. In the interim, findings can inform educational practices of those caring for this population.

Research involving participants with chronic diseases: overcoming recruitment obstacles.

Chronic diseases are rampant in the United States and account for the majority of healthcare costs in this country. The implementation of research studies involving members of chronic disease populations is necessary to the development of interventions aimed at preventing these conditions and improving outcomes. The implementation of such studies hinges on the successful recruitment of an adequate number of study participants. Difficulties surrounding participant recruitment in behavioral studies are well documented and present a barrier to researchers aiming to conduct research involving persons with chronic diseases. Common recruitment challenges associated with recruiting chronic disease participants are reviewed, and a highly effective, alternative recruitment strategy used by the authors in a qualitative study involving persons with epilepsy is discussed in detail.

Needs and Concerns of Family Caregivers of Persons With Type 2 Diabetes: An Integrated Review of Cross-cultural Literature With Implications for the American Indian Population.

Purpose The purposes of this review were to identify the needs and concerns of family caregivers of persons with type 2 diabetes and to develop recommendations for future research on family caregivers of American Indians with type 2 diabetes. Searching the Cumulative Index to Nursing and Allied Health, Ovid, and PubMed, an extensive literature review was conducted using 10 search terms for articles published from 1990 to 2013. References of retrieved studies were also searched. Conclusions On the basis of the search criteria, 6 studies exploring the needs and concerns of family caregivers of persons with type 2 diabetes were identified. Findings were placed in 5 predetermined categories derived from Bakas et al’s needs and concerns framework: (1) finding information and resources related to type 2 diabetes, (2) dealing with the emotions and behaviors of the care recipient, (3) providing physical care, (4) providing instrumental care, and (5) dealing with one’s own personal responses to caregiving. The cross-cultural literature helped identify common ground and specific literature about the experiences of American Indian caregivers. Further research is needed on the needs of caregivers of persons with type 2 diabetes, particularly those in the Native American and other minority populations. Findings can be used to develop interventions to improve outcomes for these caregivers.

Word Adjacency Graph Modeling Separating Signal From Noise in Big Data

There is a need to develop methods to analyze Big Data to inform patient-centered interventions for better health outcomes. The purpose of this study was to develop and test a method to explore Big Data to describe salient health concerns of people with epilepsy. Specifically, we used Word Adjacency Graph modeling to explore a data set containing 1.9 billion anonymous text queries submitted to the ChaCha question and answer service to (a) detect clusters of epilepsy-related topics, and (b) visualize the range of epilepsy-related topics and their mutual proximity to uncover the breadth and depth of particular topics and groups of users. Applied to a large, complex data set, this method successfully identified clusters of epilepsy-related topics while allowing for separation of potentially non-relevant topics. The method can be used to identify patient-driven research questions from large social media data sets and results can inform the development of patient-centered interventions.

A systematic review of analyses of the concept of quality of life in nursing: Exploring how form of analysis affects understanding

Quality of life is central to nursing and commonly aimed at the preservation of health-related quality of life. Few rigorous studies address concept development of health-related quality of life. The purpose of this article was to explore quality of life as it is used in nursing by systematically reviewing published concept development. The results found the need for a more robust and rigorous study of the concept and suggest that forms of analysis be used that explicitly explore the concept in context using empirical data along with a broad and clearly defined literature.

Older adults and new-onset epilepsy: experiences with diagnosis.

ABSTRACT Background and Purpose: The incidence of new-onset epilepsy is highest in older adults. Research has revealed that epilepsy diagnosis in older adults is difficult and often delayed. However, in-depth qualitative inquiry is needed to more richly describe older adults’ experiences with being diagnosed with epilepsy to reveal the context in which these delays occur and the effects on older adults. Methods: A qualitative descriptive approach was used to describe the diagnosis experiences of 20 older adults with new-onset epilepsy. Semistructured interviews were used to generate data. All data were transcribed verbatim and analyzed via conventional content analysis. Results: A delayed diagnosis of epilepsy was pervasive in the sample, and participants attributed delays to both their actions and their care providers’ actions. Women experienced delays more often than men. Experiences of those whose diagnoses were not delayed are also discussed. Research using larger and more diverse samples is needed to investigate the scope of diagnosis delays in this population as well as to design interventions to improve the diagnosis process for older adults with new-onset epilepsy.