Thesis advisor: Dorothy A. Jones / As the United States population ages, knowing and understanding the older adult couple’s experience living with chronic illness at home is significant to inform new strategies of care, and planning of resources for the improvement in the health and well-being for a potentially vulnerable population. The purpose of this qualitative study was to better understand the older adult couple’s experience while living with chronic illness at home by answering the following research questions: What is the life pattern manifested by an older adult couple living with chronic illness at home? Are there common themes across the life patterns of older adult couples living with chronic illness living at home? The theoretical framework guiding this study was Margaret Newman’s Health as Expanding Consciousness using a hermeneutic-dialectic phenomenology method. The study’s sample consisted of 14 married older adults (> 65 years of age) couples living together at home. The research method explored the experiences of the older adult couple through dialogue within the context of their social environment in all its complexity. This approach gave voice to the older adult couples’ experiences and their meaning from their perspective, which facilitated insights about each older adult couple as well as common themes across the older adult couples. Three themes emerged from the study, (1) an unfolding pattern of living meaningfully as an older adult couple with chronic illness while moving through life transitions, (2) couple interconnectedness strengthens the bonding within the older adult couple and promotes self-growth, and (3) a resonating process within the older adult couple promotes movement toward expanding consciousness. Conceptual models are proposed. The findings suggest older adult couples living with chronic illness at home strive to live meaningfully while experiencing multiple life transitions embedded in a resonating process that facilitates change. / Thesis (PhD) — Boston College, 2018. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

Made available in DSpace on 2016-07-27T13:46:30Z (GMT). No. of bitstreams: 1 ERIKA PEREIRA MACHADO.pdf: 990501 bytes, checksum: 550397d7499ea75eca571f0a03ff27a2 (MD5) Previous issue date: 2014-02-06 / As pessoas buscam em sua essência a espiritualidade e/ou sagrado como forma para entender o significado da vida e da morte, de sua presença no mundo, melhorar sua saúde, e também pode ser uma ferramenta para lidar com as adversidades e os estados traumáticos, agressores e estressores que a vida propõe. Numa doença crônica e incapacitante surge na vida do doente a figura da pessoa cuidadora, na sua maioria é um familiar, cuja entrega à prestação de cuidados ao outro é diária, ininterrupta e em algumas situações pode ser cansativa e dolorosa ao cuidador. A rotina de quem cuida é uma tarefa estressante e angustiante, pois ao cuidador estão expostos eventos que o podem conduzir ao estresse, ansiedade e depressão, ou seja, essas são algumas das respostas de um organismo fragilizado por fatores agressores diários e que requer uma atenção e disposição imediata. Nesta situação a pessoa cuidadora precisa ser assistida e receber um cuidado integral com intuito de prevenir ou minimizar um adoecimento. Nesta pesquisa se propôs discutir a espiritualidade na vida cotidiana de cuidadores de doentes, com enfoque em três textos bíblicos referenciando a práxis terapêutica do taumaturgo, Jesus, cuidador e curador da integridade e totalidade das pessoas doentes e cuidadoras. O estudo fenomenológico-hermenêutico foi dividido em três capítulos. No primeiro é apresentada uma fundamentação teórica da doença crônica e a realidade que envolve o cuidador familiar. No segundo é abordado o discurso de três narrativas bíblicas de cura, apresentadas nos textos de Marcos 10,46-52, Mateus 9,1-8 e Lucas 13,10-17, num olhar para a pessoa cuidadora como um ser que necessita de cuidados e atenção. No terceiro elucida elementos e reflexões para uma prática de cuidado integral e especial para com a pessoa cuidadora frente à tarefa de cuidado. Na conclusão é apresentada a espiritualidade no modo de construir e vivenciar o sofrimento que se instaura na vida de quem adoece. Mediante as perdas, renúncias e decepções, o cuidador é uma pessoa que adoece em silêncio e a espiritualidade é uma das formas de promover qualidade de vida e ressignificação ao que adoece, agindo positivamente sobre a saúde mental, produzindo esperança, acolhimento, amparo e sentido a vida.

Fatigue is a debilitating symptom of chronic illness that is deleteriously affected by perceived stress, a process particularly relevant to inflammatory disease. Hopefulness, a goal-based motivational construct, may beneficially influence stress and fatigue, yet little research has examined these associations. We assessed the relation between hope and fatigue, and the mediating effect of stress, in individuals with fibromyalgia, arthritis, and inflammatory bowel disease. Covarying age, sex, and pain, stress partially mediated the association between hope and fatigue; those with greater hope reported less stress and consequent fatigue. Therapeutically, bolstering hope may allow proactive management of stressors, resulting in less fatigue.

abstract: Medical policies, practices, and definitions do not exist solely in the clinical realm; they show up in the lived experiences of patients. This research examines how people with the chronic illness called myalgic encephalomyelitis (ME) define their own illness experiences. They have situated knowledge about their illness onset, search for care, and clinical encounters. Their knowledge complicates and challenges the existing norms in clinical practice and medical discourse, as the experience of searching for care with ME reveals weaknesses in a system that is focused on acute care. Patient narratives reveal institutional patterns that obstruct access to medical care, such as disbelief from clinicians and lack of training in chronic illness protocols. They also reveal patterns in physician behavior that indicate the likelihood of receiving effective care. These patient narratives serve as a basis for continued examination of ME as well as further reconstruction of medical practice and procedure. / Dissertation/Thesis / Masters Thesis Social Justice and Human Rights 2019

Within the 21st century, Type II diabetes has emerged as a public health crisis. African Americans and Hispanic Americans have the highest rates of Type II diabetes and obesity compared to European Americans. The purpose of this DNP project was to teach medical assistants (MA) to provide self-management of diabetes and obesity for the African American population in the local clinical setting. An educational tool kit for health providers was developed to guide the educational project. The chronic care model was used to guide the development of the educational toolkit. A pretest posttest design was incorporated into the educational program. The materials were found to be clear, accurate, and easy to read by the medical assistants. Four MAs, who worked at the clinical setting, participated in the educational program that taught them to use the toolkit developed for this project. To evaluate the effects of the educational program for the MAs, the results of the pre and posttests were scored and showed that MAs had significantly increased their knowledge of teaching diabetes and obesity self-management for African Americans (pretest mean score 80, posttest mean score 93). An implication of this scholarly project is that it will give clinicians the resources needed to create social change in health care by addressing education in diabetes and obesity. Positive social change may result as the African American patients who receive education from medical assistants at the clinical site improve their self-management skills to prevent diabetes and obesity or the complications of the disease.

Congestive heart failure (CHF) affects an estimated 5.1 million Americans over the age of 20. The purpose of this quantitative study was to determine whether there is a difference in the Quality of Life (QOL) for Congestive heart failure patients receiving care through telehealth compared to patients receiving face-to-face care (usual care). Guiding this project was the Self-Care Model of Chronic Illness because the primary outcome of the self-care model is illness stability, well-being, and quality of life. Seventy-seven veterans with Heart Failure (HF) from the Washington D.C. Veterans Affairs Medical Center (VAMC) participated in the project. Forty reported they were receiving telehealth and 37 reported that they were receiving face-to-face care. The average participant age was 67 years with a range of 44 to 93 years. Seventy-five of the participants were male and 2 were female. Sixty-four participants were Black and 12 were White. The Minnesota Living with Heart Failure (MLHF) questionnaire average score for the telehealth group was 49.4 (SD = 28.7) and the face-to-face care group was 37 (SD = 27.9). With equal variance assumed, there was no significant difference between MLHF scores in the telehealth group compared to the usual care group (t = -1.91, p > .05). Thus, opportunities for using telehealth without negatively affecting patient outcomes, such as QOL, are plausible. It can be concluded that providing services using home telehealth for HF patients may produce outcomes that are equivalent to those receiving traditional services.

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.

Bakgrund: Inflammatoriska tarmsjukdomar innefattar Crohns sjukdom och ulcerös kolit. De senaste åren har en ökning av de kroniska sjukdomarna skett bland annat i Sverige. Sjukdomarna går i skov och drabbar olika lager av tarmens slemhinna. För att hjälpa personerna att uppleva hälsa, trots kronisk sjukdom, bör sjuksköterskan känna till hur de upplever det att leva med sjukdomen. Syfte: Syftet med litteraturstudien var att beskriva personers upplevelse av att leva med en inflammatorisk tarmsjukdom. Metod: Vid sökning i databaserna Cinahl och PubMed valdes nio artiklar ut för att användas i studien. Bearbetningen av resultatet inspirerades av innehållsanalys. Resultat: Resultaten visade emotionella upplevelser såsom skuld, vanmakt, rädsla, hopp, stress och oro. Sjukdomen gav begränsningar i det dagliga livet i form av att personerna inte kunde delta i aktiviteter, kostrestriktioner, etcetera. Symtomen gav en ständig påminnelse om sjukdomen och ledde till förändrad självbild. Det fanns olika sätt att hantera sin sjukdom på och stöd upplevdes för det mesta positivt. Konklusion: Personerna påverkas av sjukdomarna även när dem är i remission. Närvaro av ett stödjande nätverk har betydelse för personernas dagliga funktion. / Background: Inflammatory bowel diseases include Crohn's disease and ulcerative colitis. In recent years, an increase of these chronic diseases occurred partly in Sweden. The diseases are relapsing, and affect different layers of the bowel mucosa. To help the persons to experience health, despite chronic illness, the nurse should be familiar with their perception of living with the disease. Purpose: The purpose of this overview was to describe the persons experiences of living with an inflammatory bowel disease. Method: When searching the databases Cinahl and PubMed, nine articles were selected for use in the study. The processing of the results was inspired by content analysis. Results: The results showed emotional experiences such as guilt, helplessness, fear, hope, stress and anxiety. The disease caused restrictions in daily life such as not being able to participate in activities, dietary restrictions, etcetera. The symptoms gave a constant reminder of the disease and led to altered self-image. There were different ways to manage their illness and support was perceived positively for the most of the time. Conclusion: The persons are affected by the diseases even when they are in remission. The presence of a support network is important for the persons daily functioning.

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.

Bakgrund. Föräldrar upplever oro över att cystisk fibros ska få deras barn att uppleva sig annorlunda. På grund av en långvarig relation upplever sjuksköterskor det känslomässigt krävande att vårda en patient med cystisk fibros i livets slutskede. Problem. Få kunskap om den som är drabbad av CF upplever att sjukdomen är ett hinder för att leva. Syfte. Beskriva upplevelser av att leva med cystisk fibros. Metod. En kvalitativ ansats har använts i form av en litteraturstudie med beskrivande syntes av publicerade artiklar. Resultat. Det framkommer att människor med cystisk fibros har varierande upplevelser av begränsningar och autonomi. De upplever sig som normala utifrån sin livsstil samtidigt som de känner sig annorlunda. Ungdomar upplever svårigheter i vardagen och genomgår en process för att acceptera sjukdomen som en del av livet. Att uppleva ansvar över sin vård och sitt liv skapar upplevelse av självständighet vilket underlättar för den drabbade att uppleva sig som normal. Slutsatser. Det är svårt att acceptera ett liv med CF, den drabbade upplever sig som annorlunda samtidigt som de kämpar för att uppleva sig som normala. Ytterligare forskning behövs om vårdrelationen mellan sjuksköterska och patienten som är drabbad av CF. / Background. Parents experience concern because cystic fibrosis will make their children experience themselves different. Because of a lengthy nurse-patient relationship the nurses‟ experience it is emotionally demanding to care for a patient with cystic fibrosis in the final phase of life. Problem. To get knowledge if the one affected by cystic fibrosis experience that the disease is an obstacle in life. Purpose. To describe experiences of living with cystic fibrosis. Method. A qualitative approach was used in the form of a literature study with a descriptive synthesis of published articles. Results. It appears that people with cystic fibrosis experience varied perceptions of limitations and autonomy. They experience themselves as normal as seen from their lifestyle at the same time as they felt different. Young people experience difficulties in their everyday life and go through a process of accepting the disease as a part of life. To experience responsibility over your care and life creates an experience of independence which makes it easier for the ones‟ affected to experience themselves as normal. Conclusions. It is difficult to accept a life with cystic fibrosis, the affected ones experience themselves as different at the same time as they struggle to experience themselves as normal. Further research is needed about the nurse-patient relationship between the nurse and the patient that is affected by cystic fibrosis.