Type 2 Diabetes Self-Management Variables and Predictors.

Guided by the Self and Family-Management framework, relationships between diabetes distress, self-efficacy, resilience and outcomes of A1c, quality of life and health status were explored. A cross-sectional descriptive design was used. Seventy eight individuals were enrolled from US clinics. Data were analyzed to test for associations, main effects and interactions and predictors of self-management. Results indicated low diabetes distress (M = 20.53), high self-efficacy (M = 7.32), moderate resilience (M = 80.27), and mean A1c 7.35%/56.88 mmol/mol. Seventy six percent of participants scored above the mental health norm, and 46% scored above the physical health norm. The average weighted quality of life score was -1.74. Diabetes distress was negatively associated with self-efficacy, resilience, physical health, mental health, and quality of life. Self-efficacy was positively associated with resilience, physical health, and quality of life. Resilience was positively associated with physical health, mental health and quality of life. Positive associations were found between quality of life, and physical and mental health. No associations were found between A1c and variables in the study. Multiple significant interactions were found with A1c, mental health and quality of life outcomes. Terms in the model included treatment regimen, years since diagnosis, provider collaboration, and history of diabetes self-management education. Distress was a significant predictor of health status and quality of life. The results confirm self-management facilitators self-efficacy and resilience and barrier diabetes distress and their relationships with outcomes in the framework. This study contributes to the understanding of the emotional aspect of diabetes. Continuing this work will allow researchers to better understand self-management, support self-management efforts and better outcomes.

Visual Arts in Nursing Education: An Inventive Interprofessional Initiative to Cultivate Metacognitive Awareness in Beginning Nursing Students.

PURPOSE: To test an interdisciplinary art-based educational program for beginning baccalaureate traditional and accelerated nursing students. DESIGN: Longitudinal study (Pretest-Posttest) of nursing students' metacognitive awareness. METHOD: As part of a first-semester foundations nursing course, all students participated in the Art of Nursing program consisting of three 90-minute sessions led by graduate Art Education students in a local fine arts museum. Before and after the program, subcomponents of critical thinking were assessed using the Metacognitive Awareness Inventory (MAI). FINDINGS: A total of 218 students (56 traditional, 162 accelerated) participated. Statistically significant improvement was observed on seven components of the MAI. Although significant increases were observed for Declarative (p < .0001), Planning (p < .0001), and Comprehension Monitoring (p < .0001), the differences pre to post were of different magnitudes between the student groups, characterizing a large change in the traditional versus accelerated group. CONCLUSIONS: Our results suggest that (1) nursing students' metacognitive awareness benefits from the museum-based experience despite demographic and educational differences and (2) overall the accelerated student group has exhibited higher metacognitive awareness at baseline as compared with the traditional student group; however, both groups demonstrate significant growth in this area after experiencing an art-based program.

Influence of physiological and psychological factors on cognitive dysfunction in heart failure patients.

AIM: Our study aimed to examine factors that contribute to cognitive dysfunction in patients with heart failure (HF). BACKGROUND: Although a majority of patients with HF have mild to moderate cognitive impairment, little is known about factors that influence progressive cognitive decline in this population. METHODS: We examined the influence of physiological factors (NYHA functional class II - IV, ejection fraction, co-morbidity burden, polypharmacy), psychosocial factors (anxiety, depression, evaluation for advanced therapy), and associated toxicities (anticholinergic drug burden), on cognitive dysfunction. Data were analyzed using mean (SE) for continuous variables and frequency and percent for categorical variables. Differences between NYHA functional classification (Class II vs. Class III/IV) were examined using Chi Square. Linear regression models were used to assess associations among model variables. RESULTS: Of the 113 participants with HF, Class III-IV HF were more cognitively impaired than those with NYHA Class II (p < 0.0001), had higher anxiety (p = 0.002), and depression (p = 0.003), and lower EF (p = 0.041). A majority of participants had a moderate anticholinergic drug burden, and NYHA Class III/IV participants had significantly higher medication counts than Class II participants (p = 0.034). Regression analysis found that NYHA Class III/IV, anxiety, depression and evaluation for advanced therapy significantly influenced cognitive dysfunction. CONCLUSIONS: Findings support a high prevalence of cognitive dysfunction, anxiety, and depression in NYHA class II-IV with a greater level of cognitive dysfunction in class III/IV patients.

The Obesity Paradox in Sepsis: A Theoretical Framework.

Sepsis is a life-threatening syndrome that occurs in response to a severe infection. In recent years, the understanding of the pathobiology of sepsis has been refined, with research describing an altered host response as the underlying cause. Survivors of sepsis often have long hospital stays and suffer from subsequent frailty and long-term health consequences. Predicting attributes of sepsis survivors remains challenging; however, an obesity paradox exists, wherein obese individuals survive sepsis at higher rates than their normal-weight counterparts. We present a model that describes the relationships between sepsis and obesity, focusing on inflammation as a shared pathway for dysregulation in obese and healthy-weight adults. Understanding the interaction of these complex variables is an important first step toward developing interventions and treatments to augment sepsis survival.

Obesity and 1-Year Mortality in Adults After Sepsis: A Systematic Review.

PURPOSE: In recent years, researchers have noted an "obesity paradox," where individuals with obesity survive sepsis at higher rates than their nonobese counterparts. This systematic review summarizes the literature on studies examining the association between obesity and 1-year mortality among patients admitted with sepsis, severe sepsis, or septic shock. MATERIALS AND METHODS: Using a comprehensive search strategy, a systematic review was conducted to identify studies examining the association of obesity and sepsis mortality. PubMed, Cumulative Index of Nursing and Allied Health Literature, and Elton B. Stephens Company host databases were searched for the terms sepsis, obesity, mortality, and adult. RESULTS: The initial search identified 189 studies, 9 of which met inclusion criteria. Of these, four provided evidence that obese or very obese patients with sepsis have lower mortality than nonobese patients. Methodologic differences in the remaining five studies, which reported conflicting results, limit generalizability. CONCLUSION: This systematic review on the association of obesity and sepsis mortality found three studies that demonstrated lower sepsis mortality among obese patients in the first 30 days and one showing that this protective effect extends up to 1 year. Given the increased number of patients surviving sepsis, it is important to consider long-term mortality and further describe the variables associated with increased survival.

Self and Family Management in Type 2 Diabetes: Influencing Factors and Outcomes.

Type 2 diabetes impacts over 30 million Americans and that number is increasing. Fundamental to optimal Type 2 diabetes control and improved health outcomes consists is effective self-management. There are several factors that promote and inhibit sustained and effective self-management. The established and evidence-based self and family management framework is proposed here as a solution for guiding research and practice to improve self-management and outcomes in patients with Type 2 diabetes.

Heart failure symptom clusters and quality of life.

BACKGROUND: Heart failure (HF) is a progressive symptomatic illness with reports suggesting that patients experience multiple symptoms. Symptom clusters constitute symptoms that co-occur, are related, and influence outcomes. OBJECTIVES: The specific aims of this study were to (1) examine prevalent symptoms experienced by persons with HF, (2) identify symptoms forming clusters, and (3) evaluate the impact of HF symptom clusters on quality of life (QOL). METHODS: 117 participants (62% male; 50% black; age = 56) were recruited. Prevalent symptoms were evaluated; principle components analysis (PCA) was used to extract symptom clusters; regression analysis was used to evaluate factors influencing QOL, defined as life satisfaction. RESULTS: Three symptom clusters-sickness behavior, discomforts of illness, and GI distress-were extracted. Sickness behavior significantly influenced QOL (ß = -0.603 p = 0.0001), explaining 40% of the variance (F = 75.12; R2 = 0.404; p = 0.0001). CONCLUSIONS: The Sickness Behavior cluster had a negative impact on QOL and suggests that incorporating an evaluation of these symptoms may facilitate identification and treatment of symptoms having an additive and detrimental influence on QOL. Studies to examine the stability of the clusters are warranted.

Structural Stress and Otherness: How Do They Influence Psychological Stress?

Background: This study represents the initial steps in researching the cultural distress model and explores the cumulative layering of stressors that place the patient at risk for cultural distress, including structural stress and otherness. Method: A cross-sectional descriptive correlational analysis of intersecting identities (Structural Stressors), ethnicity-related stressors (Otherness) and ethnic-identity (Otherness) on psychological stress. Participants were also asked to define the word culture. Results: Results indicated that structural stressors did not significantly influence on psychological stress but were associated with perception of discrimination. The experience of otherness significantly influenced psychological stress. Discussion: Given the association between structural stress and perceived discrimination, additional research and tool development is needed to better understand how structural stressors influence psychological stress. Participant definitions of culture fell into two primary themes: Collectiveness and Individualness, indicating that the way we live is influenced by shared experiences, yet also a product of individual choices.

Association of CTRP13 With Liver Enzymes and Cognitive Symptoms in Nonalcoholic Fatty Liver Disease.

BACKGROUND: Nonalcoholic fatty liver disease (NAFLD) is a chronic liver disease in which patients present with metabolic dysregulation and obesity as well as fat accumulation in the liver. Those with NAFLD frequently have symptoms of fatigue, sleep disturbance, depression, and cognitive dysfunction. C1q/TNF-related protein 13 (CTRP13) regulates glucose metabolism and obesity in mice, yet the role of CTRP13 in human NAFLD has not been elucidated. AIMS: Our aims were to examine whether the plasma levels of CTRP13 are (a) increased in patients with NAFLD; (b) associated with metabolic dysregulation, obesity, liver enzymes, and dyslipidemia; and (c) associated with putative symptoms of NAFLD. METHODS: An observational study was conducted with 23 adults with confirmed NAFLD. Plasma levels of CTRP13, insulin resistance, insulin sensitivity, HbA1C, lipid profile, and liver enzymes were collected. Anthropometric analysis (body mass index, waist-hip circumference ratio) and bioelectrical impedance analysis of body composition were used to assess obesity. Symptom questionnaires were used to assess putative symptoms of NAFLD. Plasma levels of CTRP13 were measured in 21 age- and sex-matched control samples from a biobank. Paired t test was used for comparison of the CTRP13 between NAFLD and controls. Pearson's correlation coefficients were used to examine associations among variables. RESULTS: Plasma levels of CTRP13 were significantly higher in patients with NAFLD than in normal controls (p < .001), were associated with higher levels of aspartate aminotransferase, alanine aminotransferase (both p < .05), triglycerides (p < .001), and poorer cognitive function, particularly visuospatial memory (p < .001). CONCLUSIONS: CTRP13 may be a surrogate biomarker of NAFLD symptoms and associated with hepatocellular damage, dyslipidemia, and cognitive dysfunction.

Smoking Behaviors in Arab Americans: Acculturation and Health Beliefs.

INTRODUCTION: Arab Americans are a growing population in the United States. In the 2011 American Community Survey, the U.S. Census Bureau reported there were close to 1.8 million Arab Americans living within the United States, a 47% increase in population size from 2000. According to the Arab American Institute, currently, that estimate has grown to approximately 3.7 million. They have high rates of smoking and low rates of smoking cessation. In this study, the researchers investigated factors influencing desire to quit smoking among Arab Americans, and their association with acculturation and health beliefs. METHODOLOGY: Cross-sectional descriptive study investigating smoking behaviors and factors influencing the desire to quit smoking among adult Arab American. Data were collected to measure tobacco use, nicotine dependence, desire to quit smoking, acculturation, and health beliefs. RESULTS: The sample ( N = 96) was 55% female, mean age of 44 years (±14.79). The desire to quit smoking was positively associated with perceived severity (p < .05) and susceptibility to cancer (p < .05), perceived benefits of quitting smoking ( p < .01); and negatively associated with smoking barriers (addiction barriers p < .05, external barriers p = .27, internal barriers p < .05), and nicotine dependence (p < .05). Being female, having a lower level of nicotine dependence, and a higher perception of cancer severity predicted higher desire to quit smoking ( p < .01). DISCUSSION: Smoking cessation intervention studies need to target appropriate health beliefs, especially the high risk of cancer caused by smoking among Arab Americans.

Influence of muscle strength on early mobility in critically ill adult patients: Systematic literature review.

BACKGROUND: Muscle strength may be one indicator of readiness to mobilize that can be used to guide decisions regarding early mobility efforts and to progressively advance mobilization. OBJECTIVES: To provide a synthesis of current measures of muscle strength in the assessment of early mobilization in critically ill adult patients who are receiving MV therapy. METHODS: Research studies conducted between 2000-2015 were identified using PubMed, CINHAL, MEDLINE, and the Cochrane Database of Systematic Reviews databases using the search terms "muscle strength", "intensive care", "mechanical ventilation" and "muscle weakness". RESULTS: Nine articles used manual muscle testing, the Medical Research Council scale and/or hand-held dynamometer to provide objective measures for assessing muscle strength in the critically ill adult patient population. CONCLUSIONS: Further research is needed to examine the application of standardized measures of muscle strength for guiding decisions regarding early and progressive advancement of mobility goals in adult ICU patients on MV.

Salivary Biomarkers of Chronic Psychosocial Stress and CVD Risks: A Systematic Review.

BACKGROUND: The use of salivary biomarkers in stress research is increasing, and the precision and accuracy with which researchers are able to measure these biomarkers have dramatically improved. Chronic psychosocial stress is often linked to the pathogenesis of cardiovascular disease (CVD). Salivary biomarkers represent a noninvasive biological method of characterizing the stress phenomenon that may help to more fully describe the mechanism by which stress contributes to the pathogenesis and outcomes of CVD. OBJECTIVES: We conducted a systematic review of 40 research articles to identify the salivary biomarkers researchers have most commonly used to help describe the biological impact of chronic psychosocial stress and explore its associations with CVD risk. We address strengths and weaknesses of specimen collection and measurement. METHODS: We used PubMed, CINAHL, EBSCOhost, Web of Science, BIOSIS Previews, Biological Sciences (ProQuest), and Dissertations/Theses (ProQuest) to retrieve 387 initial articles. Once we applied our inclusion/exclusion criteria to specifically target adult human studies dealing with chronic stress rather than acute/laboratory-induced stress, 40 studies remained, which we synthesized using Preferred Reporting Items for Systematic Reviews and Meta-Analyses criteria. RESULTS: Cortisol was the biomarker used most frequently. Sources of psychosocial stress included job strain, low socioeconomic status, and environmental factors. Overall, psychosocial stress was associated with CVD risks such as vascular pathology (hypertension, blood pressure fluctuation, and carotid artery plaque) as well as metabolic factors such as abnormal blood glucose, dyslipidemia, and elevated cardiac enzymes. CONCLUSION: Diverse salivary biomarkers have been useful in stress research, particularly when linked to CVD risks.

Perceptions of guided imagery for stress management in pregnant African American women.

Maternal stress during pregnancy has been associated with numerous adverse pregnancy, birth, and health outcomes. Pregnant African American women have been reported to have higher levels of stress compared to other ethnic or racial groups underscoring the need for effective interventions to reduce stress in this population. The purpose of this study was to gain an in-depth understanding of the perceptions of guided imagery (GI) as a technique for stress management in a cohort of pregnant African American women who participated in a GI intervention as part of a larger mixed methods randomized controlled trial. The 12week intervention was a professionally recorded compact disc with four tracks developed and sequenced to reduce stress and associated symptoms. The findings from this descriptive phenomenologic study were derived from daily logs and interviews from 36 participants randomized to the GI group. Participants described the stressful nature of their lives. Results demonstrated pregnant African American women perceived the intervention as beneficial in reducing stress and the associated symptoms. The emergent themes suggested the intervention offered a respite from their stressful lives, reduced the negative emotional responses to stress and enhanced well-being, benefited other areas of their daily life, and provided an opportunity to connect with their baby. The study results support the perceived efficacy of GI as a stress coping intervention. GI is an economic as well as easy to implement, access and use technique that has potential stress coping benefits as perceived by pregnant African American women.

Immunosuppressant-driven de novo malignant neoplasms after solid-organ transplant.

Solid-organ transplant recipients are at a 3- to 5-fold increased risk of a de novo malignant neoplasm developing compared with the general population. The most frequently developed virus-associated malignant neoplasms are Kaposi sarcoma (standardized incidence ratio [SIR], 208.0), nonmelanoma skin cancer (SIR, 28.6), and posttransplant lymphoproliferative disorder, primarily non-Hodgkin lymphoma (SIR, 8.1). Immunosuppressive agents such as corticosteroids, antimetabolites, calcineurin inhibitors, and mammalian target of rapamycin (mTOR) inhibitors play a key role in either causing or preventing this complication. It is hypothesized that some of these regimens can impair cancer surveillance, facilitate the action of oncogenic viruses, and promote direct oncogenic activity. Evolving research has shown promising dual antitumor and immunosuppressive properties of the mTOR inhibitor class. The effective management of posttransplant neoplasms most likely involves the use of these medications among other preventative options. These measures include monitoring certain viral loads as well as immunosuppressant drug levels. Reducing these levels to as low as possible for healthy engraftment and altering regimens when appropriate are management strategies that could lessen this complication of solid-organ transplant. More studies examining the effects of therapeutic drug monitoring are needed to determine specific plasma drug concentrations that will ensure organ engraftment without the development of de novo malignant neoplasms.

Psychological strains, salivary biomarkers, and risks for coronary heart disease among hurricane survivors.

OBJECTIVE: To examine the associations of psychological strains, salivary biomarkers, and coronary heart disease (CHD) risks in hurricane survivors 2 years after Hurricane Ike in the United States. BACKGROUND: Hurricane survivors often suffer from long-lasting posttraumatic stress disorder (PTSD) and other forms of psychological strain related to surviving a natural disaster and dealing with its aftermath. Psychological strains may be associated with biomarkers, which, in turn, may be associated with a higher incidence of CHD risks. METHODS: Structured interviews were conducted with 19 hurricane survivors to assess psychological strains (PTSD, perceived stress, depression, and anxiety) and measure CHD risks. Saliva samples were collected by the passive drool method and analyzed for inflammatory cytokine (interleukin [IL]-1ß, IL-6, and IL-10) and chemokine (monocyte chemotactic protein [MCP]-1) biomarkers. RESULTS: The salivary level of MCP-1 was significantly associated with PTSD symptoms, depression (both p < .01), and anxiety (p < .05). There were significant associations between anxiety and hypertension (p < .01), perceived stress and blood glucose level (p < .05), and perceived stress and obesity (p < .05). CONCLUSION: Our findings that long-lasting psychological strains are associated with major CHD risks and salivary MCP-1 levels suggest that the mechanism by which such strains play a role in the development of CHD involves recruitment of monocyte cells in response to chronic endothelial inflammation. Further studies are needed to advance our understanding of the underlying mechanisms by which the PTSD and other psychological strains contribute to the development of CHD.

Heart failure symptom clusters and functional status - a cross-sectional study.

AIM: To identify symptom clusters in individuals with heart failure and evaluate the relationship of the identified clusters to functional status. BACKGROUND: Heart Failure is a global health problem affecting approximately 1-2% of the adult population in developed countries worldwide. Individuals with heart failure may experience as many as nine symptoms and may limit activities that worsen their symptoms or adjust the way they engage in activities. DESIGN: Cross-sectional. METHODS: A convenience sample of individuals (n = 117) with a confirmed diagnosis of heart failure was recruited from an academic medical centre during 2011-2012. Prevalent heart failure symptoms and functional status outcomes (functional limitations and mobility) were evaluated. Factor analysis using the principal components method was used to extract symptom clusters. Regression analysis using a backwards stepwise model-building approach was used to examine the effects of the symptom clusters, age and co-morbidity on functional limitations and mobility. RESULTS: Three symptom clusters, sickness behaviour, discomforts of illness and gastrointestinal distress were extracted. When sickness behaviours and discomforts of illness were both present, functional limitations were more sensitive to sickness behaviours. Sickness behaviour and co-morbidity were related to limited mobility. CONCLUSIONS: Individuals with heart failure may be helped to improve their functional status by managing sickness behaviour and discomforts of illness symptoms. Identification of symptom clusters may lead to the development of interventions focusing on a cluster of heart failure symptoms.

A comparative effectiveness study of continuous positive airway pressure-related skin breakdown when using different nasal interfaces in the extremely low birth weight neonate.

A three group prospective randomized experimental design was conducted to identify differences in frequency and severity of nasal injuries when comparing various interfaces used during continuous positive airway pressure (CPAP) and identified risk factors associated with injury. Seventy-eight neonates <1500 g were randomized into three groups: continuous nasal prongs; continuous nasal mask; or alternating mask/prongs. Repeated measures ANOVA with Bonferroni correction demonstrated that significantly less skin injury was detected in the rotation interface group when compared to both mask and prong groups. In the final stepwise regression model (F = 11.51; R(2) = 0.221; p = 0.006) significant predictors of skin injury included number of days on nasal CPAP (p < 0.001) and current mean post menstrual age (p = 0. 006). Reduced nasal injury was demonstrated using rotating mask/prong nasal interfaces. Future best practices must include precise selection of device size, developmental and CPAP device positioning with focused skin assessment including rapid intervention for skin injury.

Psychosocial assessment of candidates and risk classification of patients considered for durable mechanical circulatory support.

BACKGROUND: The psychosocial assessment of candidates for transplantation (PACT), developed to assess candidates for heart transplant, has not been routinely used to assess left ventricular assist device (LVAD) candidacy. We examined the efficacy of the PACT to assess psychosocial outcomes in LVAD patients. METHODS: We reviewed patients who received LVAD implants between June 2006 and April 2011 and retrospectively applied the PACT. We determined the accuracy of identifying social success with the PACT and revised domains to reflect criteria influencing social success for LVAD patients. RESULTS: Forty-eight patients (72% men, 44% non-white, 50.4 years old) were divided into high-scoring and low-scoring groups. Nine patients with low PACT scores were falsely categorized as high-risk, whereas 4 with high scores had poor social outcomes. The score had a high positive-predictive value (0.86) but low negative-predictive value (0.31). The PACT was revised (modified [m]PACT) to measure indicators, such as social support and understanding of care requirements, identified to more closely affect LVAD outcome. The mPACT exhibited improved accuracy. A reclassification table was developed, and the net reclassification index was 0.32. The percentage of patients incorrectly classified for social risk decreased from 27% with the PACT to 8% with the mPACT. Patients with higher mPACT scores had decreased 30-day readmission rates (26% vs 67%, p = 0.045) after device implantation. CONCLUSIONS: By emphasizing social support, psychologic health, lifestyle factors, and device understanding, the mPACT showed improved performance in risk-stratifying candidates for LVAD therapy. Prospective validation is warranted.

Heart failure symptom relationships: a systematic review.

BACKGROUND: Heart failure is a prevalent chronic health condition in the United States. Individuals who have heart failure experience as many as 2 to 9 symptoms. The examination of relationships among heart failure symptoms may benefit patients and clinicians who are charged with managing heart failure symptoms. OBJECTIVE: The purpose of this systematic review was to summarize what is known about relationships among heart failure symptoms, a precursor to the identification of heart failure symptom clusters, as well as to examine studies specifically addressing symptom clusters described in this population. METHODS: The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed in the conduct of this systematic review. PubMed, PsychINFO, Cumulative Index of Nursing and Allied Health Literature, and the Cochrane Database were searched using the search term heart failure in combination with a pair of symptoms. RESULTS: Of a total of 1316 studies identified from database searches, 34 were included in this systematic review. More than 1 investigator found a moderate level of correlation between depression and fatigue, depression and anxiety, depression and sleep, depression and pain, anxiety and fatigue, and dyspnea and fatigue. CONCLUSIONS: The findings of this systematic review provide support for the presence of heart failure symptom clusters. Depression was related to several of the symptoms, providing an indication to clinicians that individuals with heart failure who experience depression may have other concurrent symptoms. Some symptom relationships such as the relationships between fatigue and anxiety or sleep or pain were dependent on the symptom characteristics studied. Symptom prevalence in the sample and restricted sampling may influence the robustness of the symptom relationships. These findings suggest that studies defining the phenotype of individual heart failure symptoms may be a beneficial step in the study of heart failure symptom clusters.

Living with a total artificial heart: patients' perspectives.

BACKGROUND: Advances in mechanical circulatory support have reduced morbidity and mortality in end-stage heart failure. To date, there have been no published studies examining the psychosocial impact on patients who are supported with a total artificial heart (TAH-t). PURPOSE: The purpose of this study was to describe the lived experience of patients currently supported by the TAH-t awaiting transplant. METHODS: A qualitative method using Giorgi's modification of phenomenologic inquiry guided the investigation, which was conducted at a transplant center located in the mid-Atlantic region of the United States. A purposive sample was selected to reflect participants currently supported by the TAH-t. All participants (9 men, 1 woman; mean age, 48.2 years; nonischemic etiology, 80%) were in-patients on the progressive care unit at the time of the interview and had been supported for at least 30 days. The mean length of device therapy was 84.7 days (range, 33-245 days). FINDINGS: Hope for the future was the overarching theme. Subthemes included reflections, for better or for worse, the secret club, and coping and adaptation. The patients reflected on severity of illness, progress, and expressed optimism. For better or for worse described how symptoms improved but were offset by restrictions imposed by the technology. The secret club described the support provided to help deal with their life situation. Coping and adaptation suggested that the patients came to terms with and accepted their circumstances. CONCLUSIONS: The findings will help clinicians understand patients experiencing a life-changing situation and implications for psychosocial interventions.