The mission of the Chronicity Areas of Excellence (AoE) is to advance and disseminate knowledge and to influence public policy related to living well with chronic health concerns.
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  1. Identifying signals of suffering by linking verbal and facial cues. [Download]

    Title: Identifying signals of suffering by linking verbal and facial cues.
    Creator: Morse, J.
    Description: Here, the authors describe microanalytically the two main behavioral states in suffering (enduring and emotional suffering) so that in subsequent research, appropriate comforting responses to ease and relieve suffering can be identified for each behavioral state. Their objectives were to describe the facial expressions of enduring and emotional suffering, and to link them with verbal narrative and thus develop a microanalytic description of each behavioral state. Using Ekman's modified EMFACS, they videotaped interviews with 19 participants and coded co-occurring verbal text and expressions. They also documented differences between each behavioral state and the transitions from enduring to emotional suffering. Enduring and emotional suffering are distinct and identifiable behaviors. These formerly implicit behavioral cues can be used in clinical assessment and research.
    Subjects: enduring, facial expression, suffering
    Date Created: 2003
  2. Stories of chronic kidney disease: Listening for the unsayable. [Download]

    Title: Stories of chronic kidney disease: Listening for the unsayable.
    Creator: Makaroff, K. L.
    Description: Aims: To explore individuals’ stories of chronic kidney disease, particularly those aspects of experience that are difficult to discuss using language (i.e., unsayable). Background: Chronic kidney disease is continuous, but it is also life-threatening and sometimes people ask difficult questions about life and death that can be challenging and for some, impossible to discuss. These ‘unsayables’ are the focus of this article. The unsayable may reside both within and beyond language. Careful analysis of narratives of illness for sayable and unsayable aspects of the experience can help illuminate new areas of concern for people with chronic kidney disease. Design: Narrative inquiry, located in a social constructionist framework, guided this study. Methods: Secondary data analysis was conducted with 46 in-depth interviews (collected between 2008-2011) with 14 people living with chronic kidney disease. Findings: Through narrative thematic analysis, we identify that the unsayable includes the following five themes: living with death, embodied experiences that were difficult to language, that which was unthinkable, unknowable mystery and that which was untold/unheard. Whereas the first four themes attend to that which is unsayable for people living with chronic kidney disease, the last theme acknowledges that which is unsayable to people living with chronic kidney disease. Conclusion: Not all experiences of illness can be explicitly articulated in language. Listening for both the sayable and unsayable aspects of life with chronic and life-threatening illness is an important nursing role.
    Subjects: narrative, communication, chronic illness, renal nursing
    Date Created: 2013
  3. "But we can't go back": Unexpected consequences of raising expectations through organizational leadership development. [Download]

    Title: "But we can't go back": Unexpected consequences of raising expectations through organizational leadership development.
    Creator: Spiers, J.A.
    Description: In 2004, a provincial cancer agency in Canada developed and implemented a provincewide Leadership Development Initiative (LDI) to enhance organizational leadership and relationships. Research using a quasi-experimental survey design determined whether LDI implementation influenced the emotional health and leadership practices of LDI participants. An ethnographic approach (18 focus groups and 13 individual interviews) explored participants' perceptions of the LDI. This article presents qualitative findings that contribute to understanding the statistically significant findings of increasing levels of cynicism, emotional exhaustion, and burnout for most LDI participants. The LDI was regarded as a critical strategy for helping leaders grow and cope with change and help in changing organizational leadership culture to be more collaborative and inclusive. However, an organizational history of short-lived, flavor-of-the-month development initiatives and growing skepticism and disengagement by leaders represented in the themes of Catch-22 and “there is no going back” contributes to understanding why these quantitative measures increased. Few studies have explored the hypothesis that real organizational development happens through a series of planned stages. In this study, leaders experienced escalating frustration because change was not seen to occur fast enough in “others” and reported that this was necessary before they would alter their own behavior. Leadership development programs in general need to reflect the reality that it takes considerable time, patience, and effort to effect fundamental change in leadership culture.
    Subjects: leadership development, focused ethnography, learning culture, organizational learning in health care, health care managers
    Date Created: 2010
  4. Conservative management for postprostatectomy urinary incontinence [Download]

    Title: Conservative management for postprostatectomy urinary incontinence
    Creator: Anderson, Coral A.
    Description: Background information The prostate is a male sex gland that surrounds the outlet of the bladder. Two main diseases of the prostate (cancer of the prostate, and benign (non-cancerous) prostatic enlargement) can be treated by surgery but some men suffer leakage of urine (urinary incontinence) afterwards. Conservative treatments of the leakage such as pelvic floor muscle training with or without biofeedback or anal electrical stimulation are thought to help men control this leakage. The main findings of the review The review of trials found that there was conflicting evidence about the benefit of therapists teaching men to contract their pelvic floor muscles for either prevention or treatment of urine leakage after radical prostate surgery for cancer. However, information from one large trial suggested that men do not benefit from seeing a therapist to receive pelvic floor muscle training after transurethral resection (TURP) for benign prostatic enlargement. Overall, there was insufficient evidence to demonstrate a beneficial effect from pelvic floor muscle training. Of three external compression devices tested, one penile clamp seemed to be better than the others. Adverse effects This one penile clamp needed to be used cautiously because of safety risks. Any limitations of the review In future updates it may be worth considering two separate reviews, looking separately at 'treatment' and 'prevention' trials. More research that is of better quality is also needed to assess conservative management.
    Subjects: Biofeedback, Magnetic Field Therapy, Exercise Therapy, Prostatectomy, Urinary Incontinence, Electric Stimulation Therapy
  5. Social-interaction knowledge translation for in-home management of urinary incontinence and chronic care. [Download]

    Title: Social-interaction knowledge translation for in-home management of urinary incontinence and chronic care.
    Creator: Jansen, L.
    Description: Although urinary incontinence (UI) can be managed conservatively, it is a principal reason for the breakdown of in-home family care. This study explored the social interaction processes of knowledge translation (KT) related to how UI management knowledge might be translated within in-home care. In-depth interview data were collected from a theoretical sample of 23 family caregivers, older home care recipients, and home care providers. Constant comparison and Glaser’s analysis criteria were used to create translating knowledge through relating, a substantive theory with 10 subthemes: living with the problem; building experiential knowledge; developing comfort; easing into a working relationship; nurturing mutuality; facilitating knowledge exchange; building confidence; fine-tuning knowledge; putting it all together; and managing in-home care. Findings inform both theory and practice of in-home UI KT, illuminating how intersubjectivity and bi-directional relational interactions are essential to translating in-home chronic care knowledge, which is largely tacit and experiential in nature.
    Subjects: urinary incontinence, knowledge translation, home care, family caregivers, aging, older adults
    Date Created: 2013
  6. Functional outcomes after neonatal open cardiac surgery: comparison of survivors of the Norwood staged procedure and the arterial switch operation [Download]

    Title: Functional outcomes after neonatal open cardiac surgery: comparison of survivors of the Norwood staged procedure and the arterial switch operation
    Creator: Alton, G.
    Description: Background: Improvements in long-term survival of children undergoing the Norwood staged procedure and the arterial switch operation have resulted in the need to prepare these at-risk children for each stage of their developmental trajectory, including school readiness. This study describes and compares functional outcomes following the Norwood staged procedure and arterial switch operations. Methods: This prospective inception cohort study comprised a sample of 73 children (71% boys) who had the Norwood staged procedure (n = 28) or the arterial switch operation (n = 45) at the age of 6 weeks or younger at the Stollery Children's Hospital, Edmonton, Alberta, between 2002 and 2005. We excluded children who had chromosomal abnormalities or cerebral palsy. When children were 18-24 months of age, parents completed the Adaptive Behavioral Assessment System II. Standard scores for the domains are mean 100, standard deviation (15); skill area scaled scores, 10 (3). Student's t-test with Bonferonni correction was used to compare groups. Results: This population has greater than four times the number of children delayed on the General Adaptive Composite than the normative group. Functional outcomes were similar in the two groups other than those of home living (Norwood: 8.8 (2.8) compared with arterial switch: 11.2 (3.1), t = 3.389, p = 0.001) and self-care (Norwood: 5.9 (3.5) versus arterial switch: 8.1 (2.6), t = 3.140, p = 0.002). Conclusion: These survivors are at increased risk for delayed functional abilities. Self-care, necessary for independence and confidence as children reach school age, was particularly low in the Norwood group. Reasons for low self-care abilities require further study.
    Subjects: Early childhood developmnt, Hypoplastic left heart syndrome, Congenital cardiac disease, Transposition of the great arteries, Adaptive behaviour, Functional outcomes
    Date Created: 2010
  7. Risk-taking attitides and their association with process and outcomes of cardiac care: a cohort study [Download]

    Title: Risk-taking attitides and their association with process and outcomes of cardiac care: a cohort study
    Creator: King, K.M.
    Description: Background: Prior research reveals that processes and outcomes of cardiac care differ across sociodemographic strata. One potential contributing factor to such differences is the personality traits of individuals within these strata. We examined the association between risk-taking attitudes and cardiac patients' clinical and demographic characteristics, the likelihood of undergoing invasive cardiac procedures and survival. Methods: We studied a large inception cohort of patients who underwent cardiac catheterization between July 1998 and December 2001. Detailed clinical and demographic data were collected at time of cardiac catheterization and through a mailed survey one year post-catheterization. The survey included three general risk attitude items from the Jackson Personality Inventory. Patients' (n = 6294) attitudes toward risk were categorized as risk-prone versus non-risk-prone and were assessed for associations with baseline clinical and demographic characteristics, treatment received (i.e., medical therapy, coronary artery bypass graft (CABG) surgery, percutaneous coronary intervention (PCI)), and survival ( to December 2005). Results: 2827 patients (45%) were categorized as risk-prone. Having risk-prone attitudes was associated with younger age (p
    Subjects: Gender, Socioeconomic status, Prospect theory, Decision making, Sex differences, Coronary heart disease, Women, In-hospital mortality, Patient preferences, Acute myocardial infarction
    Date Created: 2009
  8. An Adminstrative Data Merging Solution For Dealing With Missing Data In A Clinical Registry: Adaptation To ICD-9 to ICD-10 [Download]

    Title: An Adminstrative Data Merging Solution For Dealing With Missing Data In A Clinical Registry: Adaptation To ICD-9 to ICD-10
    Creator: Southern, D.A.
    Description: Background: We have previously described a method for dealing with missing data in a prospective cardiac registry initiative. The method involves merging registry data to corresponding ICD-9-CM administrative data to fill in missing data 'holes'. Here, we describe the process of translating our data merging solution to ICD-10, and then validating its performance. Methods: A multi-step translation process was undertaken to produce an ICD-10 algorithm, and merging was then implemented to produce complete datasets for 1995-2001 based on the ICD-9-CM coding algorithm, and for 2002-2005 based on the ICD-10 algorithm. We used cardiac registry data for patients undergoing cardiac catheterization in fiscal years 1995-2005. The corresponding administrative data records were coded in ICD-9-CM for 1995-2001 and in ICD-10 for 2002-2005. The resulting datasets were then evaluated for their ability to predict death at one year. Results: The prevalence of the individual clinical risk factors increased gradually across years. There was, however, no evidence of either an abrupt drop or rise in prevalence of any of the risk factors. The performance of the new data merging model was comparable to that of our previously reported methodology: c-statistic = 0.788 (95% CI 0.775, 0.802) for the ICD-10 model versus c-statistic = 0.784 (95% CI 0.780, 0.790) for the ICD-9-CM model. The two models also exhibited similar goodness-of-fit. Conclusion: The ICD-10 implementation of our data merging method performs as well as the previously-validated ICD-9-CM method. Such methodological research is an essential prerequisite for research with administrative data now that most health systems are transitioning to ICD-10.
    Subjects: Cardiac catheterization, Alberta, Care outcome analyses, Disease, Revacularization, Survival, Association
    Date Created: 2008
  9. Educating youths to make safer choices: Results of a program evaluation study [Download]

    Title: Educating youths to make safer choices: Results of a program evaluation study
    Creator: Wilson, D.M.
    Description: Injuries are a leading cause of childhood death and disability. Many injuries are a result of youths taking risks and not avoiding risky situations. An educational program to reduce adolescent injury risk (Prevent Alcohol and Risk-Related Trauma in Youth) has operated out of the Misericordia Hospital in Edmonton Canada since 1992. This reality-based program was evaluated to see if it was impacting program participants. An increase in correct answers for some knowledge, behavior, and attitude questions were found at one week and one month following this 1-day reality-based program. This program was thus considered as having some relevancy in educating grade-9 youths. Although a longitudinal study is needed to determine if this relevancy is long term, this study highlights the importance of reality-based public health programs.
    Subjects: Adolescents, Nursing roles, Program evaluation, Injury prevention, Research
    Date Created: 2012
  10. The transition experience of rural older persons with advanced cancer and their families: A Grounded theory study [Download]

    Title: The transition experience of rural older persons with advanced cancer and their families: A Grounded theory study
    Creator: Duggleby, W.
    Description: Background: Transitions often occur suddenly and can be traumatic to both patients with advanced disease and their families. The purpose of this study was to explore the transition experience of older rural persons with advanced cancer and their families from the perspective of palliative home care patients, bereaved family caregivers, and health care professionals. The specific aims were to: (1) describe the experience of significant transitions experienced by older rural persons who were receiving palliative home care and their families and (2) develop a substantive theory of transitions in this population. Methods: Using a grounded theory approach, 27 open-ended individual audio-taped interviews were conducted with six older rural persons with advanced cancer and 10 bereaved family caregivers. Four focus group interviews were conducted with 12 palliative care health care professionals. All interviews were transcribed verbatim, coded, and analyzed using Charmaz's constructivist grounded theory approach. Results: Within a rural context of isolation, lack of information and limited accessibility to services, and values of individuality and community connectedness, older rural palliative patients and their families experienced multiple complex transitions in environment, roles/relationships, activities of daily living, and physical and mental health. Transitions disrupted the lives of palliative patients and their caregivers, resulting in distress and uncertainty. Rural palliative patients and their families adapted to transitions through the processes of \"Navigating Unknown Waters\". This tentative theory includes processes of coming to terms with their situation, connecting, and redefining normal. Timely communication, provision of information and support networks facilitated the processes. Conclusion: The emerging theory provides a foundation for future research. Significant transitions identified in this study may serve as a focus for improving delivery of palliative and end of life care in rural areas. Improved understanding of the transitions experienced by advanced cancer palliative care patients and their families, as well as the psychological processes involved in adapting to the transitions, will help health care providers address the unique needs of this vulnerable population.
    Subjects: Older people, Change, Medical care, Cancer patients, Home care
    Date Created: 2010