Metasynthesis: Dying adults' transition process from cure-focused to comfort-focused care.

AIM: To describe and explain the process of transition from cure-focused to comfort-focused health care as perceived and reported by patients, family members, and healthcare providers. BACKGROUND: Moving into the last phase of life due to advanced illness constitutes a developmental transition with increased vulnerability for patients and family. DESIGN: Qualitative metasynthesis. DATA SOURCES: Medline, CINAHL, and PsycInfo databases searched from inception through March 2016. Primary research reports published from 1990 to 2015, using qualitative designs to report transition experiences of patients, family members, and/or healthcare providers were included. REVIEW METHODS: Key elements were extracted and organized into matrices. Findings from each report were analysed using qualitative coding. RESULTS: The sample was 56 unique reports from 50 primary studies. Patients and families emphasized the importance of receiving understandable information, emotional support, respect for personhood and control. The critical juncture of 'realizing terminality' preceded a transition to comfort-focused care. Subsequently, a shift in goals of care emphasizing comfort and quality of life could occur. Continued provision of information, effective support, respect and control promoted 'reframing perceptions' and capacity to embrace a changed identity. Reframing allowed patient and family to find meaning and value in this last phase of life and to embrace the opportunity to prepare for death, nurture relationships, and focus on quality of living. CONCLUSION: Understanding the developmental process that can be engaged by patients and families at the end of life provides a theoretical basis that can inform choice and timing of interventions to reduce suffering and enhance positive outcomes.

The relationship between acculturation and oral contraceptive use among Korean immigrant women.

We explored the relationship between acculturation and beliefs, attitudes, norms, and intention regarding oral contraceptive use among Korean immigrant women using acculturation and the theory of reasoned action (TRA) as the frameworks. A total of 1,494 Korean surname-based telephone numbers were sampled in New York City. One hundred forty-five Korean immigrant women completed a telephone survey. The findings support the assumption that acculturation affects intention to use oral contraceptives indirectly only through one or more of the TRA components. Acculturation could function as an antecedent to changes in beliefs, attitudes, norms, and intention in this population. Acculturation assessment tools could provide health professionals insight into how to better approach this population on such culturally sensitive health issues as contraceptive use.

Psychometric testing of four transtheoretical model questionnaires for the behavior, completing health care proxies.

The purpose of the study was to develop four questionnaires based on the transtheoretical model (TTM) to assess the behavior, completing a healthcare proxy (HCP). The aims were to (a) operationalize the four TTM constructs for completing a HCP and (b) evaluate the psychometric properties of the questionnaires. The questionnaires were constructed and content validity established using an expert panel. Internal consistency values for each questionnaire and subscales within each questionnaire were >.79. Confirmatory factor analysis provided evidence that decisional balance and the processes of change questionnaires each contained two factors. Our data support validity and reliability of the TTM questionnaires related to HCP completion.

Metasynthesis: withdrawing life-sustaining treatments: the experience of family decision-makers.

AIM: The present study was undertaken to synthesise findings from qualitative investigations of family participation in decisions to withdraw and/or withhold life-sustaining treatment from a seriously ill family member. BACKGROUND: As a consequence of increasing effectiveness and sophistication of available medical interventions, death is commonly preceded by a decision to withdraw or withhold potentially life-sustaining treatments. These decisions take place in a bioethical context characterised by the pre-eminence of self-determination, but patients are typically too ill to make their own decisions. Thus, family members are called upon to participate in these morally consequential decisions on the patient's behalf. DESIGN: Metasynthesis. METHOD: Metasynthesis is a form of inquiry that provides for integration of qualitative studies' findings to strengthen knowledge for practice and advance theoretical development. This metasynthesis was conducted using the constant comparative methods of grounded theory. RESULTS: Family members engage in a process of participation in decision-making that is comprised of three major categories: reframing reality, relating and integrating. Surrogates used both cues and information as they reframed their understanding of the patient's status. Relationships with providers and with other family members powerfully influenced the decision-making process. Integrating was characterised by reconciling and going forward. This part of the process has both intrapersonal and interpersonal aspects and describes how family decision-makers find meaning in their experience and move forward in their lives. CONCLUSIONS: This synthesis provides a more comprehensive and empirically supported understanding of family members' experiences as they participate in treatment decisions for dying family members. Relevance to clinical practice. This metasynthesis provides evidence to improve family care during treatment withdrawal/withholding decision-making and a theoretical model that can be used to guide creation of clinical practice guidelines. Through increased understanding of family members' experiences, clinicians can more effectively support family decision-making processes.

The effectiveness of interventions to increase advance directive completion rates.

OBJECTIVE: Despite federal and state laws governing advance directives (ADs), interventions to increase rates of legally completed ADs have not produced significant results. This study synthesizes the state of the science regarding effectiveness of interventions to increase AD completion rates. METHODS: Garrard's method for conducting a systematic literature review was followed. In all, 25 studies meeting inclusion criteria were reviewed. Interventions fell into two types: (a) didactic-information distributed through an educational program or clinical encounter or by a mailing and (b) interactive-person-to-person interaction where participants had the opportunity to ask questions and/or receive assistance completing the forms. RESULTS: Postintervention rates of AD completion were: didactic = no change to 34% increase; interactive = 23% to 71% increase. DISCUSSION: Education without the ability to ask questions does not significantly increase the AD completion rate. Didactic interventions did not usually increase completion rates higher than the predicted average rate for the general population.

Spirituality in nursing and health-related literature: a concept analysis.

Spirituality has become an increasingly popular concept among the nursing and health-related literature. The purpose for conducting this concept analysis, guided by Walker and Avant's methodology, was to (a) examine how spirituality has been used within the current body of nursing and health-related literature, (b) clarify the meaning of spirituality by discovering what this concept's current critical attributes/characteristics are, and (c) propose a definition of spirituality based on the concept analysis findings. A total of 90 references were reviewed, including 73 nursing and health-related references. Concept analysis findings revealed that spirituality was defined within four main themes in the nursing and health-related literature: (a) spirituality as religious systems of beliefs and values (spirituality = religion); (b) spirituality as life meaning, purpose, and connection with others; (c) spirituality as nonreligious systems of beliefs and values; and (d) spirituality as metaphysical or transcendental phenomena.

Thai school-age children's perception of fear.

Information about how Thai school-age children perceive fear is necessary for the development of culturally appropriate anxiety or fear measures. The purpose of this study was to describe Thai school-age children's perceptions of fear from their own perspective. Qualitative data from 13 Thai students in Grades 3 to 6 in three schools in Bangkok were obtained by semistructured, formal interviews, combined with drawings. The data were analyzed using content analysis within the frame of category development in the grounded theory method. Several culturally specific aspects of fear were revealed. This information is useful for health care providers caring for Thai children. The results of this study also illustrate the importance of carefully assessing children from culturally diverse backgrounds related to manifestations of anxiety or fear.

Relapsing MS patients' experiences with glatiramer acetate treatment: a phenomenological study.

This study examined the experiences of a group of patients with relapsing multiple sclerosis who received glatiramer acetate for the treatment of their illness. Heideggerian phenomenologic research methods drove the data analysis process with the Atlas Qualitative Data Analysis software program. The sample was a diverse group of 20 men and women 39-64 years of age who had been diagnosed with MS 1-21 years and taking glatiramer acetate 1-7 years. Several participants had been on other treatments; they related their reasons for choosing this treatment and how they manage to persist with taking the daily injections. The themes included choosing glatiramer acetate, self-managing care, injecting, healthy lifestyle, side effects, support, and participant advice to others. Patients with relapsing MS experience a complex process of adjustment when they are diagnosed with the disease and come to the decision to start aggressively treating the illness. They view glatiramer acetate as an integral part of the formula to maintain control over their bodies and manage the disease. Taking the glatiramer acetate injection every day becomes easier as time goes on. They reported that side effects were minimal and manageable.

The meaning of child abuse for nurses in Taiwan.

The purpose of this study was to explore nurses' experiences and perspectives regarding child abuse in Taiwan. Semistructured interviews with Taiwanese nurses were audiotaped and transcribed verbatim for this descriptive study. The method of category development proposed by the grounded theory method was used to develop categorical themes that reflected the nurses' experiences and perspectives. From the 18 registered nurses interviewed, four major categorical themes emerged that were integral to nurses' experiences working with abused children: the meaning of child abuse, conflict, feeling frustrated, and nurses' roles. Findings provide a base for understanding child abuse from the perspectives of nurses and a beginning understanding of interventions needed to improve identification and reporting of child abuse in Taiwan. Although nurses have considerable awareness and concern about child abuse, additional education related to this issue is needed.

Voices of oncology nurses: What is needed to assist patients with advance directives.

The process of completing and executing advance directives (ADs) is not without problems and issues that need to be studied. Nurses, by the nature of their practice, are in a unique position to help patients complete ADs. The findings reported in this article focus on an open-ended question that was part of a larger quantitative survey. The open-ended question, "What do oncology nurses need to increase their ability to assist patients with ADs?" was asked of a random sample of Oncology Nursing Society members. The Knowledge, Attitudinal, Experiential Survey on Advance Directives instrument was used to survey a random sample of oncology nurses in four states: California, Illinois, New York, and Texas. Of the 900 nurses who responded to the survey, 677 (75%) wrote responses to the open-ended question. Grounded theory was used to analyze data to establish and saturate categories. The four topics discussed most often by the nurses were time, education, support, and the nurse's role. Nurses also wrote about philosophical issues related to dying, end-of-life issues, and ADs, as well as institutional issues that have an impact on the assistance they can give patients completing ADs. In addition, the category "communicating" was frequently discussed by nurses. The importance of communication was a thread woven throughout their responses.

A voice for the dying.

Secondary analysis of data collected for a grounded theory study of family surrogate decision-making processes at the end of life was undertaken to describe participants' perceptions of the needs of family decision makers as expressed through their advice to others. Data were analyzed using the constant comparative method of grounded theory, resulting in identification of the major categories and their properties describing surrogates' recommendations. The entire data set (approximately 22 hours of audiotaped narrative data collected from persons who had functioned as surrogates during the terminal phase of a family member's cancer) was newly analyzed for the secondary analysis. All participants experienced the role as very demanding. Those who were able to see that another's wishes were honored experienced satisfaction. Advice from experienced surrogates offers nurses both direct guidance to help them meet surrogates' needs and insight to assist them in coaching surrogates in the performance of this critical role.

Home remedies for type 2 diabetes used by Mexican Americans in El Paso, Texas.

The purpose of this article is to examine the use of herbal remedies to treat Type 2 diabetes among Mexican Americans in El Paso County, Texas, on the U.S.-Mexico border. Interviews were conducted in Spanish with 22 Mexican American adults diagnosed with Type 2 diabetes mellitus. Open-ended questions were used to elicit theparticipants' beliefs about the appropriate treatment of Type 2 diabetes, including both Western biomedical and herbal therapy. Kleinman's explanatory model of illness served as the framework, and the grounded theory method was used for data analysis. A majority of participants were taking prescribed Western medications in conjunction with traditional Mexican folk remedies. Participants relied on the advice of family, friends, and neighbors to provide them with guidance, and some herbs used by participants were not indicated for the treatment of diabetes. Health care providers should be aware that Mexican American clients may make choices about herbal remedies without expert guidance and advice.

Mexican Americans' explanatory model of type 2 diabetes.

The purpose of this study was to develop a culturally specific explanatory model (EM) of diabetes mellitus from the perspective of Mexican Americans living along the United States-Mexican bonier Kleinman's concept of EMs of illness was used as the theoretical orientation, and the grounded theory method was used to sample, collect, and analyze data. The Mexican Americans in this study described their perceptions of type 2 diabetes using the following constructs: causes, symptom, treatment, and social significance. Each of the components of Mexican Americans' EM contained elements of both the folk and the biomedical perspective. Susto (a fright or scare) was perceived to be the primary cause of diabetes, although participants also incorporated biomedical causes. Treatment included the use of both herbal and biomedical modalities. The use of herbal remedies was not well understood by the participants despite the fact that some used herbal therapies to control their diabetes.

The role and meaning of susto in Mexican Americans' explanatory model of type 2 diabetes.

This article examines the role and meaning of susto (fright) in Mexican Americans' explanatory model (EM) of type 2 diabetes. This analysis is based on a study of the health beliefs about type 2 diabetes mellitus among Mexican Americans living in El Paso County, Texas, on the U.S.-Mexico border. Susto was described as an event that could change the bodily state, causing a susceptible person to be more vulnerable to the onset of type 2 diabetes after some unspecified time. The study results illustrate the integration of multiple etiologies into Mexican Americans' EMs of diabetes and illustrate how the environment affects the way in which these explanations are manifested. Acculturation of biomedical system beliefs into the traditional Mexican health belief system has resulted in a synthesis of both systems and a blending of the participants' explanation of type 2 diabetes.

Nursing at ground zero: experiences during and after September 11 World Trade Center attack.

The purpose of this study is to discover shared perceptions, feelings, and common experiences of nurses after the September 11th World Trade Center terrorist attack through interpretive analysis of narrative stories of seventeen nurses. Six themes and one constitutive pattern describe the experiences: (a) Loss of a symbol and regaining new meaning, (b) Disaster without patients, (c) Coordinating with and without organizations, (d) Rediscovering the pride in nursing, (e) Traumatic Stress, and (f) Preparing for the future. The constitutive pattern is that nursing enables a humanitarian disaster response.

Knowledge, attitudes, experiences, and confidence of nurses in completing advance directives: a systematic synthesis of three studies.

BACKGROUND: Advance directives (ADs) are one of the few means for patients to indicate their end-of-life (EOL) treatment option preference. An effective and consistent solution for increasing the AD completion rate remains elusive. A literature search revealed three studies completed in the United States that employed an identical methodology and focused on registered nurses (RNs). These studies examined a variety of concepts, including nurses' knowledge, attitudes, experience, and confidence with regard to ADs. PURPOSE: This review completed a systematic synthesis of reported results from three survey studies that focused, respectively, on oncology, critical care, and emergency RNs who were members of various professional nursing organizations. METHODS: Our investigation addressed the following research questions: What are the knowledge, attitudes, experience, and confidence of RNs with regard to ADs, and what is the relationship among these study variables? Each study used the Knowledge, Attitudes, and Experiential Survey on Advance Directives Instrument to obtain findings. RESULTS: Findings indicated that level of knowledge of nurses was about 60% correct and that nurses reported a moderate level of confidence related to ADs. Nurses stated they were experienced in AD discussions and agreed with attitude statements indicating support of ADs. Advocacy was a theme in the findings of these studies, as most nurses agreed with the statement that nurses should uphold patients' wishes. Time was identified as an impediment to AD completion. Critical care nurses had higher levels of awareness of ADs, as compared with oncology and emergency room nurses, although the cause of this difference is unclear. Although RNs provided AD education and explanations and described the various types of EOL care, these study subjects suggested that discussions of patients' prognoses may be an intervention more appropriate for nurses or other clinicians with advanced education and training. CONCLUSION/LIMITATIONS: The low Cronbach's alpha values in the attitude scales within the survey instrument posed limitations in the original research on the use of attitude scale scores in statistical analysis. The data examined in this study was obtained from published reports, which limited the synthesis and analysis of study findings. Nurses need to refine their role in AD discussions with patients. End-of-life discussions should be an interwoven process between RNs and the multidisciplinary team.

Relapsing-remitting multiple sclerosis patients' experience with natalizumab: a phenomenological investigation.

This phenomenological investigation was undertaken to gain a better understanding of multiple sclerosis (MS) patients' experience with natalizumab (Tysabri; Biogen Idec Inc, Cambridge, MA) treatment and its impact on their quality of life (QOL). Twenty MS patients who were receiving natalizumab treatment were recruited by the physicians, nurse practitioners, nurses, and social worker of the William C. Baird Multiple Sclerosis Center in Buffalo, New York, between March 2009 and November 2009. Patients were invited to participate if they had relapsing-remitting MS, had received at least six treatments of natalizumab, and could articulate their experience. An interviewer obtained informed consent, gathered basic demographic information, and then tape-recorded the participants' accounts of their experience with natalizumab. The audio-recorded interviews were transcribed and de-identified before being submitted to the investigators for analysis. The Atlas.ti qualitative data analysis program (Scolari, Berlin, Germany) was used to manage the data. Patients found natalizumab easy to tolerate and effective; moreover, they described improvement in their QOL. Patients must weigh the benefits of control of their MS against the increased risk of developing progressive multifocal leukoencephalopathy with natalizumab treatment. Information from this study will be used to educate professionals involved in MS patient care as well as patients and families considering treatment with natalizumab.

Applying the transtheoretical model to health care proxy completion.

BACKGROUND: For many, an important health decision is whether or not to document end-of-life wishes using an advance directive (e.g., health care proxy). To date, interventions targeting this health behavior have had little effect on increasing advance directive completion rates. Health behavior models, such as the transtheoretical model (TTM) could be useful for understanding the health decision-making processes used along a continuum, from no intention to complete an advance directive to completing one and discussing it with an appointed advocate. PURPOSE: To explore the applicability of the TTM for a previously understudied health behavior-completing a health care proxy (HCP). METHOD: Four established TTM measures for completing a HCP (stages of change, processes of change, decisional balance, and self-efficacy) were administered to 566 adults with coverage from 1 of 2 health insurance companies. Separate analyses of variance were used to test the relationships between the independent variable (stages of change) and dependent variables (processes of change, decisional balance, self-efficacy scores). RESULTS: Consistent with other TTM research both the experiential and the behavioral processes of change revealed the lowest scores in the precontemplation stage peaking in the preparation stage. The pattern of pros and cons was replicated from previous TTM studies, with the 2 scores crossing over just prior to the preparation stage. Self-efficacy scores incrementally increased across the stages of change with the largest effect evident from the precontemplation to preparation stage. CONCLUSION: The models developed from this study can be used to guide the development of stage-based interventions for promoting health care proxy completion.

Developing a mid-range theory of patient advocacy through concept analysis.

AIM: The aim of this paper is to clarify and refine the concept of patient advocacy through synthesizing the advocacy literature in nursing and to establish a theoretical basis for future studies on patient advocacy in nursing. BACKGROUND: Patient advocacy is an essential component of the Registered Nurse professional role. During the past 30 years, the patient advocacy role has become more important, but the concept of patient advocacy lacks a consistent definition and research into nurses' patient advocacy roles is limited. There have been few quantitative empirical studies on patient advocacy in nursing. METHOD: Walker and Avant's method of concept analysis was used as a guideline in examining the concept of patient advocacy through synthesizing the advocacy literature in English (1974-2006). FINDINGS: A mid-range theory of patient advocacy emerges during the process of synthesizing and analysing the advocacy literature. Three core attributes of the concept of patient advocacy are identified: (1) safeguarding patients' autonomy; (2) acting on behalf of patients; and (3) championing social justice in the provision of health care. They reflect nurses' patient advocacy roles at both macro- and micro-social levels. Antecedents of patient advocacy occur at both macro- and micro-social levels and call for nurses' advocacy roles in the healthcare system. Consequences produced by nurses' patient advocacy behaviours are contextual. Nurses' patient advocacy behaviours not only can positively influence the patients, other nurses and the nursing profession, but also can cause negative consequences for nurses who take action to advocate for patients. CONCLUSION: The proposed mid-range theory may be useful in guiding advocacy practice in nursing and in guiding research in the advocacy area. The proposed theory needs to be furthered refined and tested in the future.