First year death rates remain unacceptable high for the end-stage renal disease (ESRD) population. New effective methods are vital to improve first year morbidity and mortality outcomes for the population transitioning from Stage 4 chronic kidney disease (CKD) to ESRD)/Stage 5 CKD. Based on current methods, evidence-based recommendations made by nephrology providers are frequently not heeded by patients in Stage 4 CKD. Low levels of patient knowledge, self-efficacy, and a poor ability to self-manage CKD negatively influence a patient’s ability to follow provider recommendations. The group visit (GV) intervention has demonstrated improvements in disease-related outcomes through increased levels of patient knowledge, self-efficacy, and disease self-management for other chronic diseasses such as diabetes and congestive heart failure (CHF). No data are available for the use of GVs in CKD The purpose of the study was to develop and test a nurse practitioner-facilitated chronic CKD GV model versus usual nephrology care for Stage 4 CKD patients (knowledge, selfefficacy/self-management, physiological data, and satisfaction). As classified by the National Kidney Foundation’s (NKF) staging system, Stage 4 CKD is considered severe kidney disease, with a decrease in the functional capacity of the kidney as determined by a glomerular filtration rate (GFR) of 15-30 ml/min. It is common for patients with Stage 4 CKD to progress to Stage 5 CKD/end-stage renal disease (ESRD), requiring dialysis or transplantation to survive. Preliminary instrumentation and feasibility studies were conducted prior to a pilot study of a CKD GV model. The development and validation of the Stage 4 CKD Knowledge Instrument was completed with 59 Stage 4 patients. Findings supported reliability (KuderRichardson-20 [KR] = .89) and content validity (I-CVI = .97, S-CVI= 1.0) Feasibility of the CKD GV model was assessed with a single group, pretest-posttest design using a convenience iv sample of eight Stage 4 patients. Results demonstrated an improvement in knowledge of CKD from a median of 69% to 86% (p =.012). No improvements were noted in self-efficacy scores (p = .230). GV satisfaction ranged from very good to excellent. Feasibility was supported by a high retention rate (100%). No barriers to participant recruitment or GV implementation were encountered. The pilot study used a two-group, repeated measures experimental design, with a sample of 30 Stage 4 CKD patients from two office locations of an outpatient nephrology practice. Patients were randomized to the GV intervention or to usual nephrology care. CKD-knowledge, self-efficacy, and self-management scores were collected at baseline, six months, and nine months. Physiological data were measured at baseline, six months, and nine months. GV satisfaction was obtained after the completion of GVs (six months). Nephrology practice satisfaction was obtained from by both groups at nine months. MANOVA for repeated measures was calculated for data collected at the three time points. Twenty-six of 30 patients completed the study, with four patients ineligible to complete the study due to progression to ESRD and dialysis initiation. GV attendance was 92%. CKD knowledge was statistically improved for both groups (F(1.498, 34.446) = 6.363, P = .008). While not statistically significant, a favorable upward trend in the mean scores for the subscales of self-management (communication, partnership in care, and self-care) was demonstrated in the GV patients, with a lack of improvement found in the usual care group for these subscales. Selfefficacy scores revealed a non-significant improvement in mean scores for the GV patients during the GVs, not seen with usual care patients. GV satisfaction was again high with the vast majority of patients requesting use of GVs in their future nephrology care. v Current methods of intervention in the Stage 4 CKD population have made little impact on reducing first-year ESRD mortality and morbidity rates. Opportunities to intervene in the poor outcomes begin in the predialysis care of Stage 4 patients. Based on the documented success of multidisciplinary approaches in predialysis care, of GVs in other chronic diseases, and of chronic illness care based on the CCM, a high probability for success exists with the application of GVs in CKD. Although limited by a small sample size, promising improvements in the subscales of disease self-management, self-efficacy, CKD knowledge, and high satisfaction with the GV model for GV participants were revealed in this study. Further research is warranted for the CKD GV model on a larger randomized sample in other locations. Much needed data would be provided on which to base decisions for use of the CKD GV intervention in the predialysis care of Stage 4 patients.

Nearly two decades of research on translating evidence-based care guidelines into practice has resulted in a considerable body of primary and secondary evidence about guideline implementation strategies and the individual, organizational and environmental challenges associated with closing the evidence to practice gap in primary care. Interventions to improve professional performance are complex and a disentangling of the various independent, intervening and constraining variables is required in order to be able to design and implement interventions that can improve primary care practice performance. The PRECEDE-PROCEED planning model (Green & Kreuter, 1999) provides a step-wise theoretical framework for understanding the complexity of causal relationships among the variables that affect the adoption of evidence-based practice and may assist in the design and implementation of practice-based interventions. Knowledge of an evidence-based practice guideline is important, but a consensus has emerged that having knowledge is rarely sufficient to change practice behaviour. Didactic education or passive dissemination strategies are ineffective, whereas interactive education, reminder systems and multifaceted interventions tailored to the needs of the practice are effective. Outreach or practice facilitation is a proven effective multifaceted approach that involves skilled individuals who enable others, through a range of tailored interventions, to address the challenges in implementing evidence-based care guidelines within the primary care setting. The challenges to implementing evidence-based chronic illness care practice guidelines are thought to be similar to the other contextual, organizational and individual behavioural challenges associated with the uptake of research findings into practice. A multifaceted guideline implementation strategy such as practice facilitation may be well-suited to improving the adoption of these guidelines within rural primary care settings. However, research has not systematically reviewed, through meta-analysis, the published practice facilitation trials to determine overall effects and an implementation research study of practice facilitation that has considered fidelity of implementation within the rural Ontario setting for a complex practice guideline such as chronic illness management has not been done. The systematic review in the thesis incorporated an exploratory meta-analysis of randomized and non-randomized controlled trials of interventions targeted towards implementing evidence-based practice guidelines through practice facilitation, and was conducted to gain an understanding of the overall effect of practice facilitation and the factors that moderate implementation success. The results were the identification of an improvement overtime in the methodological rigour of practice facilitation implementation research based on a critical appraisal of methods, a significant moderate overall effect size of 0.54 (95% CI 0.43 – 0.65) for 19 good quality practice facilitation intervention studies and several significant effect size modifiers; notably, tailoring to the needs of the practice, using multiple intervention components, extending duration, and increasing the intensity of practice facilitation were associated with larger effect sizes. As more practices were assigned to the practice facilitator, the effect diminished. A significant positive association between the number of PRECEDE predisposing, enabling and reinforcing strategies employed by the facilitator and the effect size was detected. The implementation research study utilized mixed methods for data collection as part of an embedded case study of four rural primary care practices to determine the implementation fidelity of the practice facilitation of chronic illness care planning and the factors that impeded and contributed to implementation success. The feasibility of and potential cost savings of practice facilitation via videoconferencing was also implemented for two of the practices. For those practices that successfully implemented care planning, fidelity was achieved for the implementation of care plans. On the other hand, the dosage, duration, component delivery of the practice facilitation intervention was low in comparison to other published studies, and tailoring of the intervention to the practice was inconsistent. Based on the qualitative analysis of physician interviews, the moderating factors for successful implementation were categorized into the broad themes of pessimism and tempered optimism. Pessimistic physicians were unsuccessful at implementation, lacked a willingness to engage and were uncomfortable with the patient-centred approach to chronic illness care. Optimists were positive about the psychosocial, patient-centred assessment aspects of the chronic illness care protocol and provided anecdotes of success in resolving patient problems. However, this was tempered as both pessimists and optimists reflected on the time intensive aspect of the protocol and the unlikelihood of widespread implementation without additional supports. Participating physicians were satisfied with the facilitator and the videoconferencing experience, and the intervention cost analysis revealed opportunities for cost saving via the use of videoconferenced facilitation. Improvements to the intervention suggested by participants included integrating chronic illness management with medical information systems, involving other health disciplines, and forming networks of community health resources and support services for health providers and patients. This work has demonstrated that although practice facilitation can successfully result in moderate significant improvements in practice behaviour, it is not necessarily singularly effective in all contexts or for all targeted behaviours. A complex practice guideline such as the chronic illness care management model is unlikely to be adopted in the current context of primary care in rural Ontario and as a consequence to have any impact on the health of chronically ill patients without further intervention supports, adaptation, and implementation research undertaken to demonstrate successful execution of chronic illness care management. Alternative care delivery models are required to address barriers and improve the delivery of chronic illness care management.

Nearly two decades of research on translating evidence-based care guidelines into practice has resulted in a considerable body of primary and secondary evidence about guideline implementation strategies and the individual, organizational and environmental challenges associated with closing the evidence to practice gap in primary care. Interventions to improve professional performance are complex and a disentangling of the various independent, intervening and constraining variables is required in order to be able to design and implement interventions that can improve primary care practice performance. The PRECEDE-PROCEED planning model (Green & Kreuter, 1999) provides a step-wise theoretical framework for understanding the complexity of causal relationships among the variables that affect the adoption of evidence-based practice and may assist in the design and implementation of practice-based interventions. Knowledge of an evidence-based practice guideline is important, but a consensus has emerged that having knowledge is rarely sufficient to change practice behaviour. Didactic education or passive dissemination strategies are ineffective, whereas interactive education, reminder systems and multifaceted interventions tailored to the needs of the practice are effective. Outreach or practice facilitation is a proven effective multifaceted approach that involves skilled individuals who enable others, through a range of tailored interventions, to address the challenges in implementing evidence-based care guidelines within the primary care setting. The challenges to implementing evidence-based chronic illness care practice guidelines are thought to be similar to the other contextual, organizational and individual behavioural challenges associated with the uptake of research findings into practice. A multifaceted guideline implementation strategy such as practice facilitation may be well-suited to improving the adoption of these guidelines within rural primary care settings. However, research has not systematically reviewed, through meta-analysis, the published practice facilitation trials to determine overall effects and an implementation research study of practice facilitation that has considered fidelity of implementation within the rural Ontario setting for a complex practice guideline such as chronic illness management has not been done. The systematic review in the thesis incorporated an exploratory meta-analysis of randomized and non-randomized controlled trials of interventions targeted towards implementing evidence-based practice guidelines through practice facilitation, and was conducted to gain an understanding of the overall effect of practice facilitation and the factors that moderate implementation success. The results were the identification of an improvement overtime in the methodological rigour of practice facilitation implementation research based on a critical appraisal of methods, a significant moderate overall effect size of 0.54 (95% CI 0.43 – 0.65) for 19 good quality practice facilitation intervention studies and several significant effect size modifiers; notably, tailoring to the needs of the practice, using multiple intervention components, extending duration, and increasing the intensity of practice facilitation were associated with larger effect sizes. As more practices were assigned to the practice facilitator, the effect diminished. A significant positive association between the number of PRECEDE predisposing, enabling and reinforcing strategies employed by the facilitator and the effect size was detected. The implementation research study utilized mixed methods for data collection as part of an embedded case study of four rural primary care practices to determine the implementation fidelity of the practice facilitation of chronic illness care planning and the factors that impeded and contributed to implementation success. The feasibility of and potential cost savings of practice facilitation via videoconferencing was also implemented for two of the practices. For those practices that successfully implemented care planning, fidelity was achieved for the implementation of care plans. On the other hand, the dosage, duration, component delivery of the practice facilitation intervention was low in comparison to other published studies, and tailoring of the intervention to the practice was inconsistent. Based on the qualitative analysis of physician interviews, the moderating factors for successful implementation were categorized into the broad themes of pessimism and tempered optimism. Pessimistic physicians were unsuccessful at implementation, lacked a willingness to engage and were uncomfortable with the patient-centred approach to chronic illness care. Optimists were positive about the psychosocial, patient-centred assessment aspects of the chronic illness care protocol and provided anecdotes of success in resolving patient problems. However, this was tempered as both pessimists and optimists reflected on the time intensive aspect of the protocol and the unlikelihood of widespread implementation without additional supports. Participating physicians were satisfied with the facilitator and the videoconferencing experience, and the intervention cost analysis revealed opportunities for cost saving via the use of videoconferenced facilitation. Improvements to the intervention suggested by participants included integrating chronic illness management with medical information systems, involving other health disciplines, and forming networks of community health resources and support services for health providers and patients. This work has demonstrated that although practice facilitation can successfully result in moderate significant improvements in practice behaviour, it is not necessarily singularly effective in all contexts or for all targeted behaviours. A complex practice guideline such as the chronic illness care management model is unlikely to be adopted in the current context of primary care in rural Ontario and as a consequence to have any impact on the health of chronically ill patients without further intervention supports, adaptation, and implementation research undertaken to demonstrate successful execution of chronic illness care management. Alternative care delivery models are required to address barriers and improve the delivery of chronic illness care management.

My diploma thesis deals with issues of gender relations and the construction of identities of lived experiences of parents caring for a child (children) with a chronic illness. For my qualitative research, I have chosen the method of semi-structured interviews with both parents of the child (children). Subsequent analysis of the data in this empirical study examines the way in which care for a child with chronic illness affects, due to its demanding character, gender relations and whether it leads to more balanced gender relations or vice versa. I also deal with the process of identifying both parents in the day care of a child with chronic illness in the context of a combination of paid work and home care and children. In my work, I see how my communication partners are conceptualizing the chronic illness of the child as a differentness and the care of a child with a chronic illness as a burden. I focus on the emotional plane of parenthood and also analyze the processes of negotiation within different institutions (health and education organizations, state authorities). Key words: Chronic illness, child, parenthood, differentness, burden, care, gender relations