Cynthia K. Russell

The Structure of Everyday Self-Care Decision Making in Chronic Illness

As health care reform strategists increasingly recognize the critically important potential of effective everyday self-care decision making for reducing the burden of illness and the strain on health service systems, wemust find ways to understand and support it. In this study, the authors investigate persons with expertise in self-care management of type 2 diabetes,HIV/AIDS, and multiple sclerosis to understand how everyday self-care decision making is learned and experienced. They used interview, think-aloud, and focus groups to construct an account of how persons affected by these chronic diseases make decisions in relation to the choices in their everyday lives and learn to manage the untoward effects of these conditions accordingto their unique contexts and values. The findings form a conceptual foundation for ongoing inquiry into this complex phenomenon and provide insights that might assist clinicians to understand more fully the responses and attitudes of those they serve.

Evaluation of qualitative research studies

You work on a palliative care unit where you have many opportunities to discuss end of life decisions with patients and family members. In a recent team meeting of your unit’s providers, the topic of “appropriate” treatment choices for patients at end of life comes up. Some providers believe that they should counsel patients and family members to “help them make better end of life decisions so that they will have a good death.” There is, however, no consensus about how this should be done. You volunteer to see if any studies have been done on decision making at the end of life. You remember that your institution has an online subscription to Evidence-Based Nursing . You sign in and go to the search screen. In the field “word(s) anywhere in article” you type in “end of life” (in quotations because you are looking for articles that include all 3 words together) and “decision”. 4 matches are found. The first is an abstract entitled “Providers tried to help patients and families make end of life decisions”.1 You review the full text of the abstract, which describes a qualitative study by Norton and Bowers2 that seems to address the issues of interest. You get a copy of the full article from the library so that you can more fully assess the usefulness of this study for your team. Many authors have proposed criteria for appraising qualitative research.3–,10 Some question the appraisal process because of a lack of consensus among qualitative researchers on quality criteria.6–8,10 Despite this controversy, and while recognising that criteria will continue to evolve, we provide a set of guidelines to help nurses identify methodologically sound qualitative research studies that can inform their practice. Our standard approach to appraising an article …

Complementary/alternative medicine in chronic illness as informed self-care decision making

The reasons that persons with chronic illness explore complementary and alternative medicine (CAM) have not been well understood. Using data from a study of self-care decision making in chronic illness, we conducted a qualitative secondary analysis to interpret the rationale underlying decisions to experiment with and use various CAM practices and products. The findings confirm that CAM use can be understood as a critical component of self-care management in general, and not as a rejection of conventional medicine or an unrealistic search for cure. In contrast, it represents personal responsibility for health, reframing the measures by which therapeutics are evaluated, and adopting a pragmatic approach to living as well as possible in the context of a chronic condition.

The Relevance of Familism in Cross-Cultural Studies of Family Caregiving

Although familism has been studied in both Mexican American and Anglo families, there is controversy about whether familism in both groups is the same. Research has shown great within-group variability, and in addition, the kinship structure in the two groups isfundamentally different. This article explores the cross-cultural issues in conceptualizing familism and its relevance to caregiving among Anglo and Mexican American caregivers. Based on data obtained in an ongoing research program, the process of arriving at similarities and differences in the expression of familism is discussed using Berrys criteria for achieving cultural equivalence.

Beyond Textual Perfection: Transcribers as Vulnerable Persons

Primarily women, transcribers are essentially invisible persons, paid to serve as nameless, faceless technicians even though they participate in a transformative auditory experience. Transcribers are drawn into the lives of research participants through hearing the details of their everyday lives and extraordinary circumstances. Exploring the work worlds of transcribers, the authors point to the need to consider transcribers as persons. Transcribers may require the protection of ethical and institutional review committees to prevent emotional injury during the course of sensitive research. Protecting transcribers can include ethical review to examine the possibility of transcriber vulnerability and appropriate researcher interventions fully informing transcribers about the nature of the research and the data that will be collected before hiring takes place, establishing regular debriefing sessions, alerting the transcriber in advance of receiving particularly difficult interviews, and preparing transcribers for the termination of a study.

Toward a cross-cultural perspective of family caregiving.

This article is partofa symposium that explores the issues involved in developing cross-culturally equivalent conceptualizations and measures for studying family caregiving. The examples used are from the instrument development phase of an ongoing program of research designed to generate and test a theory that explains the quality of family caregivingforfrail elders at home. This article provides the backgroundfor the symposium by introducing the symposiums unifying theme: cross-cultural equivalence. The process described is based on the experiences of the cross-cultural research team and Berrys model for developing cross-culturally equivalent research.

Toward a Cross-Cultural Understanding of Family Caregiving Burden

This article is part of a symposium describing the development of cross-culturally relevant instruments to measure familism, caregiver burden, and quality of elder caregiving among Angloand Mexican American caregivers. This article explores issues involved in measuring caregiving burden. Caregiving burden is thought to adversely affect family caregiving, but the influence of culture on perceptions of burden has not been explored. Because no researchfocuses on caregiving burden among Mexican American caregivers, thefirst step involved reviewing the literaturefor culturalfactors influencing caregiving and using the expertise of the cross-cultural team to identify and compare the meaning of caregiving burden in both groups. Next, two instrumentation studies were done to analyze the items on Poulshock and Deimlings Burden Instrument for comparable meaning and internal consistency within and between groups. The third step involved assessing the validity of Poulshock and Deimlings conceptualization of burden cross-culturally.

Patients' Explanatory Models for Heart Failure and COPD Exacerbations

Although there is extensive information on the disease aspect of heart failure (HF) and chronic obstructive pulmonary disease (COPD), the illness aspect of these diseases has received limited attention. This limitation in our knowledge is of concern because these diseases are increasing in incidence and prevalence and contributing to the premature morbidity and mortality of thousands of persons. This naturalistic inquiry study was undertaken to describe the explanatory models (EMs) of persons hospitalized for HF (n = 30) or COPD (n = 30) exacerbations. In semistructured interviews, participants offered descriptions of the etiology, cause, and effects of their disease exacerbations and identified interventions that they believed would have helped prevent their hospitalizations or helped them to live better at home. The findings provide a basis for understanding the EMs of persons with HF or COPD as an initial step in making health care more relevant.

Formative and summative evaluation of a practice doctorate program.

Practice doctorate programs are developing rapidly to meet the American Association of Colleges of Nursing recommendation that advanced practice nurses will be prepared with a Doctor of Nursing Practice by 2015. Evaluation of nursing doctoral programs has focused almost exclusively on research doctorate programs. The authors examine formative evaluations from students enrolled in a practice doctorate program and summative evaluations provided by students at the time of and 1 year following graduation. Suggestions for nurse educators and administrators are presented.

Aesthetics and Substance in Qualitative Research Posters

Poster presentations of qualitative research are increasing in number. Currently, no guidelines exist for preparing qualitative research posters to assist researchers in designing posters that will be maximally effective. In this article, we present guidelines for qualitative posters, developed from our evaluation of qualitative posters at research conferences and a review of the literature. Areas discussed include content, text, materials, component arrangement, and visuals. Although qualitative research celebrates creativity, consideration of these areas will help researchers ensure that their messages are clearly received by the largest possible audience.