"Just too busy living in the moment and surviving": barriers to accessing health care for structurally vulnerable populations at end-of-life.

BACKGROUND: Despite access to quality care at the end-of-life (EOL) being considered a human right, it is not equitable, with many facing significant barriers. Most research examines access to EOL care for homogenous 'normative' populations, and as a result, the experiences of those with differing social positioning remain unheard. For example, populations experiencing structural vulnerability, who are situated along the lower rungs of social hierarchies of power (e.g., poor, homeless) will have unique EOL care needs and face unique barriers when accessing care. However, little research examines these barriers for people experiencing life-limiting illnesses and structural vulnerabilities. The purpose of this study was to identify barriers to accessing care among structurally vulnerable people at EOL. METHODS: Ethnography informed by the critical theoretical perspectives of equity and social justice was employed. This research drew on 30 months of ethnographic data collection (i.e., observations, interviews) with structurally vulnerable people, their support persons, and service providers. Three hundred hours of observation were conducted in homes, shelters, transitional housing units, community-based service centres, on the street, and at health care appointments. The constant comparative method was used with data collection and analysis occurring concurrently. RESULTS: Five significant barriers to accessing care at EOL were identified, namely: (1) The survival imperative; (2) The normalization of dying; (3) The problem of identification; (4) Professional risk and safety management; and (5) The cracks of a 'silo-ed' care system. Together, findings unveil inequities in accessing care at EOL and emphasize how those who do not fit the 'normative' palliative-patient population type, for whom palliative care programs and policies are currently built, face significant access barriers. CONCLUSIONS: Findings contribute a nuanced understanding of the needs of and barriers experienced by those who are both structurally vulnerable and facing a life-limiting illness. Such insights make visible gaps in service provision and provide information for service providers, and policy decision-makers alike, on ways to enhance the equitable provision of EOL care for all populations.

Contrasting stories of life-threatening illness: a narrative inquiry.

BACKGROUND: Advances in science and technology have resulted in longer lives for people with life-threatening illnesses. However, little research compares the stories of people with different life-threatening illnesses. OBJECTIVES: The objectives of this study were to explore and contrast how people story and re-story life-threatening illness specifically cancer, chronic kidney disease (CKD) and HIV. DESIGN: Narrative inquiry within a social constructionist perspective was used. METHODS: A total of 113 in-depth interviews were conducted with 32 participants over a period of three years. PARTICIPANTS: Study participants included 32 people: 10 with cancer, 14 with CKD and 8 with HIV/AIDS. Participants varied in age (37-83 years old, mean=61.2 years), gender (17 men and 14 women), location (urban and rural), time post-diagnosis (median=8 years), intensity or invasiveness of treatment, and prognosis (continuous treatment, remission, cure, palliative). RESULTS: Participants described living with a life-threatening illness as a delicate balance. They focused on living their lives yet were fully and acutely aware of their own mortality. There was an undercurrent of sustained uncertainty that permeated their lives. Stories of life-threatening illness differed across the three illness groups and shifted over time as disease trajectories changed. Each disease brought specific challenges. With cancer, turning points and uncertainty were prominent. With CKD, a stealthy beginning to life-extending treatment through dialysis or transplant was evident, and with HIV, a shift from a perceived death sentence to a focus on hope and living was notable. CONCLUSIONS: Findings revealed that trajectories of illness for participants living with cancer, CKD and HIV are complex and differ markedly across the groups. Narratives shifted across all of the illness groups as participants navigated and re-storied the terrains of their life-threatening illness. Findings illuminated the need for health care providers to focus on person specific and contextualized aspects of the illness experience.

Meaning-making and managing difficult feelings: providing front-line end-of-life care.

Managing grief and difficult emotions related to end-of-life (EOL) care is an often under-recognized part of the work of resident care aides (RCAs). In this interpretive analysis we explore the shared and socially constructed ideas that 11 RCAs in 1 Canadian city employ to make sense of death and the provision of EOL care. RCAs spoke of personal challenges involved in witnessing death and experiencing loss, as well as helplessness and frustration when they could not provide quality EOL care. RCAs invoked "consoling refrains" to manage grief, including "such is life," "they are better off," and "they had a full life." To manage guilt and moral distress, RCAs reminded themselves "I did my best" and "I experience rewards." Though these ideas help RCAs, some may need to be reframed through coaching and mentorship, to prevent unintended negative effects on care or the reproduction of ageist beliefs more broadly.

Helpful communications during the diagnostic period: an interpretive description of patient preferences.

With a diagnosis of cancer, life changes for patients in a profound manner. The window of time known as cancer diagnosis is one of considerable turbulence and distress for patients. Therefore, diagnosis constitutes a time during which communication with healthcare professionals is of particular importance in setting the stage for the way cancer illness will be experienced. Our research explores communications throughout the cancer trajectory from the perspective of patients themselves. We are following a sample of 60 cancer patients, representing a range of tumour sites, from the early diagnostic period through to recovery, chronic, or advanced disease. Using interpretive description analysis techniques, we document patterns and themes related to various components of the cancer journey. In this paper, we focus on themes related to perceived helpful communication during the diagnosis experience as reported by our study participants both at the time of being newly diagnosed patients, and as they reflect on that period 12 months later. These findings illuminate experiential issues of importance to patients in relation to cancer care communication and the manner in which helpful communications during this sensitive time may facilitate the subsequent experience living with and obtaining care for cancer.

Supporting lay carers in end of life care: current gaps and future priorities.

Informal carers are central to the achievement of end of life care and death at home and to policy aims of enabling patient choice towards end of life. They provide a substantial, yet hidden contribution to our economy. This entails considerable personal cost to carers, and it is recognised that their needs should be assessed and addressed. However, we lack good research evidence on how best to do this. The present position paper gives an overview of the current state of carer research, its gaps and weaknesses, and outlines future priorities. It draws on a comprehensive review of the carer literature and a consensus meeting by experts in the field. Carers' needs and adverse effects of caregiving have been extensively researched. In contrast, we lack both empirical longitudinal research and conceptual models to establish how adverse effects may be prevented through appropriate support. A reactive, "repair" approach predominates. Evaluations of existing interventions provide limited information, due to limited rigour in design and the wide variety in types of intervention evaluated. Further research is required into the particular challenges that the dual role of carers as both clients and providers pose for intervention design, suggesting a need for future emphasis on positive aspects of caregiving and empowerment. We require more longitudinal research and user involvement to aid development of interventions and more experimental and quasi-experimental research to evaluate them, with better utilisation of the natural experiments afforded by intra- and international differences in service provision.

Examining the process of community development.

AIM OF THE STUDY: To present the results of evaluation research investigating a successful community development project. RATIONALE: Many governments, health care agencies, and organizations require community participation in health care. As a result, nurses and other health professionals are often required to practice using a philosophy of community development. Although the theoretical, philosophical, and practical components of community development are well articulated, there is little evidence that exemplifies the experience of initiating and participating in a community development project. This paper provides evidence of how one organization successfully engaged the broader community on a respite care project. METHOD: Using qualitative research methods and guided by the principles and practices of participatory action research, this evaluation engaged with the community in data collection, analysis, dissemination of finding, and in promoting effective change. RESULTS: Four themes emerged that provide insight into how one HIV/AIDS organization successfully undertook community development. These themes include: (a) identifying a community need; (b) addressing the various components identified in the community development process; (c) highlighting the strategies used to engage in successful community development; and (d) attending to factors that influence community development. CONCLUSION: The results of this research contribute to the body of knowledge related to engaging in the process of community development. By highlighting the experiences of one community group, it is hoped that nurses can learn and incorporate this knowledge into practice.

Comparison of low-volume versus standard-volume left ventriculography.

Left ventriculography provides useful information about cardiac function, wall motion, and mitral regurgitation (MR). However, standard volumes of contrast agent frequently are associated with ventricular ectopy. This study compares the use of low-volume (Low-vol) ventriculography to standard volume (Std-vol) ventriculography. Left ventricular (LV) ejection fraction (EF), changes in LV end-diastolic pressure (LVEDP), the incidence of ectopy, and > 2+ MR were prospectively determined from the random order use of standard (15 mL/ second for 3 sec) and low-volume (15 mL/sec for 1 sec) contrast agents in 102 patients. Each patient served as his or her own control. Twenty-seven percent of the 204 ventriculograms were not interpretable due to ectopy. Ectopy > or = 3 beats was more common with Std-vol angiograms (41% vs. 14%, P < 0.001). Post-injection LVEDP increased from baseline after both Std-vol and Low-vol injections (P < 0.001). In patients for whom both angiograms could be interpreted (n = 58), no differences were noted between planimetered EFs (Low-vol = 61 +/- 20% vs. Std-vol = 62 +/- 20%, with r = 0.87; P < 0.001). A Bland-Altman test of agreement indicated a mean difference +/- 95% CI = -2 +/- 19%. Low-volume ventriculography reduces contrast load and ectopy while providing similar estimates of EF compared with standard volumes.

Thyroid cancer: patients' experiences of receiving iodine-131 therapy.

PURPOSE/OBJECTIVES: To enhance understanding of the experiences and educational needs of patients receiving iodine-131 (131I) therapy for the treatment of thyroid cancer. DESIGN: Qualitative design using interpretive description. SETTING: A 24-bed oncology/acute-care medical unit in a large tertiary hospital in western Canada. SAMPLE: 5 men and 22 women (18-80 years of age) who have received 131I therapy in the past two years. METHODS: Unstructured focus group and telephone interviews and field notes. Interviews were tape-recorded, transcribed verbatim, and subjected to thematic analysis. FINDINGS: Researchers elicited four major themes from the analysis: (a) recognizing the totality of the cancer experience, (b) being isolated, (c) recognizing the totality of the treatment experience, and (d) understanding barriers to treatment. CONCLUSIONS: Healthcare providers require a better understanding of thyroid disease and the treatment and side effects of 131I therapy. Furthermore, educational programs are required to adequately prepare nurses and patients for future care. IMPLICATIONS FOR NURSING PRACTICE: A need exists to improve the care and education provided to patients receiving 131I therapy. In particular, recognition of the totality of the cancer experience and the need for both staff and patient education were illustrated. If nurses are to provide comprehensive cancer care, both psychosocial and physical needs must be addressed and fulfilling these needs requires a collaborative approach among patients, nurses, and other healthcare professionals.

Creating effective nursing partnerships: relating community development to participatory action research.

The purpose of this article is to demonstrate the importance of creating effective partnerships between nurses practising community development (CD) and nurses engaged in participatory action research (PAR). To that end, an overview of the theoretical principles of CD and PAR is provided and the central tenets of each methodology explored. This is followed by a discussion of the similarities and differences inherent in CD and PAR which derive from the same theoretical and philosophical foundation; that of critical social theory. Examples of two research projects highlight the relationship between CD and PAR and demonstrate the value of creating effective practitioner/researcher partnerships. Finally, some of the lessons learned in creating these important partnerships will be presented. Although this call for practitioner/researcher alliance is not new, what is new is the central role the practising nurse could take in research. Creating partnerships between practising nurses and nurse researchers advances the opportunity to actualize responsive and effective PAR and to fulfill nursing's social contract.

Home away from home: essential elements in developing housing options for people living with HIV/AIDS.

There is a paucity of data to enlighten our understanding regarding the need for a respite care/supported living home for people living with HIV/AIDS (PLWHIV/AIDS) and to identify the essential elements required to initiate this endeavor. Participatory action research was used in this study as the process by which the study was conducted. Focus group and in-depth interviews with 78 individuals were completed and subjected to qualitative thematic analysis. The findings suggest that a paucity of choices exist for PLWHIV/AIDS when they can no longer live independently in their own homes. Principles for developing HIV/AIDS housing programs are recommended, highlighting the need for active involvement of PLWHIV/AIDS in the program planning process. It is only with this collaboration and participation that the housing and healthcare needs of PLWHIV/AIDS can be adequately addressed.

Hypertensive left ventricular hypertrophy with left ventricular outflow tract obstructive physiology: a case of successful treatment with dual-chamber pacing.

Controversy exists over the use of atrioventricular synchronous pacing for patients with hypertrophic obstructive cardiomyopathy who are refractory to medical treatment. We present the case of an elderly man with severe-effort dyspnea attributable to hypertensive left ventricular hypertrophy with dynamic aortic outflow obstruction. We were able to achieve dramatic subjective and objective improvement in the exercise capacity of this patient with dual-chamber pacing after attempts at medical management had failed. This patient's response to therapy and his impressive response to minor pacemaker adjustments suggest that atrioventricular synchronous pacing should be considered for patients with secondary left ventricular hypertrophy as well as patients with hypertrophic obstructive cardiomyopathy.

From rhetoric to action: establishing community participation in AIDS-related research.

Acquired Immunodeficiency Syndrome (AIDS) has been described as the most challenging disease in modern history. For many people with HIV/AIDS (PWA), issues of appropriate respite care and supported housing are a pressing concern. To meet the housing requirements for PWAs, it is essential to engage this community in determining its own housing needs. To that end, a participatory action research (PAR) investigation was undertaken with the PWA community to ascertain the desirability and feasibility of a supported-living/respite-care community home. PAR has been heralded as an important research methodology in ensuring research relevance and community participation leading to effective change. Although nursing interest in PAR is increasing, there are few nursing examples that describe the process of undertaking PAR. The purpose of this article is to describe, explain, and critique the use of PAR in the case of a supported-living/respite-care home. A PAR framework is presented and the process of conducting PAR is outlined.

Palliative care at home: reflections on HIV/AIDS family caregiving experiences.

This study explored the day-to-day experiences of family members providing care at home for their dying loved one with HIV/AIDS. In-depth interviews with seven caregivers were analyzed using grounded theory qualitative methods. A conceptualization of the family caregiving experience portrays HIV/AIDS caregiving as an intense, emotional, and powerful experience filled with pride and enrichment, and conversely, with anger and disillusionment. Findings reflected a significant need for interventions designed to provide direct and effective support for family members caring for a loved one with HIV/AIDS.

Loss and bereavement: HIV/AIDS family caregiving experiences.

The purpose of this grounded theory study was to describe the experience of HIV/AIDS family caregiving in the palliative phase. Seven in-depth interviews were conducted and analyzed using the constant comparative method. The analysis resulted in a conceptualization of HIV/AIDS family caregiving. This paper describes the "personal work" of caregivers, including reconciling that a loved one would die, making life-and-death decisions, and letting go. The nature of support received to attend to this work is highlighted, with attention to its influences on HIV/AIDS caregiver bereavement. The findings of this study provide some insights into the HIV/AIDS family caregiver experience and reveal a significant need for interventions designed to support caregivers in establishing the mechanisms required for bereavement resolution. The need for the creation of supportive networks for HIV/AIDS caregivers cannot be overstated. Further research is required to help clarify and expand on how social support might have an effect on HIV/AIDS family caregiver bereavement. With this knowledge, health-care providers will be better prepared to anticipate difficulties faced by caregivers, plan appropriate interventions to address these difficulties, prevent future problems, and plan care based on theory and research.

Optimal electrode position for transvenous defibrillation: a prospective randomized study.

OBJECTIVES: This study was performed to determine the optimal position for the proximal electrode in a two-electrode transvenous defibrillation system. BACKGROUND: Minimizing the energy required to defibrillate the heart has several potential advantages. Despite the increased use of two-electrode transvenous defibrillation systems, the optimal position for the proximal electrode has not been systematically evaluated. METHODS: Defibrillation thresholds were determined twice in random sequence in 16 patients undergoing implantation of a two-lead transvenous defibrillation system; once with the proximal electrode at the right atrial-superior vena cava junction (superior vena cava position) and once with the proximal electrode in the left subclavian-innominate vein (innominate vein position). RESULTS: The mean (+/- SD) defibrillation threshold with the proximal electrode in the innominate vein position was significantly lower than with the electrode in the superior vena cava position (13.4 +/- 5.7 J vs. 16.3 +/- 6.6 J, p = 0.04). Defibrillation threshold with the proximal electrode in the innominate vein position was lower or equal to that achieved in the superior vena cava position in 75% of patients. In patients with normal heart size (cardiothoracic ratio < or = 0.55), the improvement in defibrillation threshold with the proximal electrode in the innominate vein position was more significant than in patients with an enlarged heart (innominate vein 13.0 +/- 6.5 J vs. superior vena cava 17.9 +/- 5.1 J, p < 0.01). In patients with an enlarged heart, no difference between the two sites was observed (innominate vein 13.9 +/- 4.5 J vs. superior vena cava 13.6 +/- 8.3 J, p = NS). CONCLUSIONS: During implantation of a two-lead transvenous defibrillation system, positioning the proximal defibrillation electrode in the subclavian-innominate vein will lower defibrillation energy requirements in the majority of patients.

Transcoronary cardiac pacing during myocardial ischemia.

Severe bradyarrhythmias are a rare but potentially life threatening complication of percutaneous transluminal coronary angioplasty (PTCA). Previous work has outlined a technique for coronary pacing using the angioplasty guidewire. To examine the effectiveness of this technique during severe ischemia, seven swine underwent placement of an unmodified 0.014 inch angioplasty guidewire and 3.0 mm balloon catheter in the left anterior descending (LAD) artery. Baseline pacing thresholds were obtained. Pacing was begun at twice diastolic threshold and ischemia was produced by balloon inflation. Repeat capture thresholds were obtained after 1 and 8 minutes of ischemia. Transcoronary pacing was successfully performed in all seven animals and was continued for a mean of 13.8 +/- 1.5 minutes. The baseline capture threshold was 4.0 +/- 0.5 mA. The mean capture threshold was 3.3 +/- 0.3 mA and 4.5 +/- 0.9 mA at 1 and 8 minutes of ischemia, respectively. We conclude that transcoronary pacing using the angioplasty guidewire can be successfully performed during myocardial ischemia and may serve as a reliable backup system during interventional procedures complicated by bradyarrhythmias.

Right upper lobe pulmonary edema caused by acute mitral regurgitation. Diagnosis by transesophageal echocardiography.

Unilateral pulmonary edema is a distinctly unusual clinical entity, often misdiagnosed initially as one of the more common causes of focal lung disease. Predominantly lobar pulmonary edema is rarer still. We report a case of right upper lobe pulmonary edema caused by the acute onset of severe mitral regurgitation. In addition, we briefly review the other causes of unilateral pulmonary edema, focusing on the cases that have been reported in association with heart failure and valvular heart disease. The majority of cases of right upper lobe pulmonary edema have been associated with mitral regurgitation. In addition to confirming the presence of mitral regurgitation, transesophageal echocardiography proved useful in delineating the mechanism for edema formation. It detected differential gradients between the right and left pulmonary venous systems and documented the direction of the regurgitant flow.

Coronary arterial ectasia: increased prevalence in patients with abdominal aortic aneurysm as compared to occlusive atherosclerotic peripheral vascular disease.

Coronary artery ectasia (CAE) is the saccular or fusiform dilatation of a coronary artery. CAE is found in 1.2% to 4.9% of patients at autopsy or during angiographic studies, with a similar prevalence of CAE found in patients with atherosclerotic peripheral vascular disease (PVD). Abdominal aortic aneurysm (AAA) and CAE are similar in pathogenesis and histology. To determine whether CAE occurs more frequently in patients with AAA than in occlusive forms of atherosclerotic PVD, a review of coronary angiograms was performed in patients who underwent cardiac catheterization and vascular reconstruction for AAA or occlusive atherosclerotic PVD of the lower extremities. Of 72 patients with AAA, 15 had CAE (20.8%) compared with only 2 of 69 patients with atherosclerotic PVD (2.9%) (p < 0.003). CAE was predominantly discrete, located in the left coronary system, and associated with significant coronary atherosclerosis. CAE may be more prevalent in patients with AAA resulting from a similar pathogenetic process.