Browsing by Subject "Chronic illness"
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Item Designing for lived experience : a suite of tools for people with Type 1 diabetes(2014-05) Kinbarovsky, Jesse Israel; Catterall, Kate; Gorman, Carma; Stuckey, HeatherDiabetes is a chronic, patient-managed illness. Type 1 diabetics must maintain near-constant awareness of their blood sugar levels and perform frequent medical interventions in order to remain alive and healthy. Research has shown that symptoms of poor treatment adherence manifest both physically and emotionally. While a great deal has been written about, and many products designed for, treatment of physiological symptoms and outcomes, far less has been written about, and even fewer products designed to address, the emotional experience of the type 1 diabetic. Yet the emotional effects of chronic illness have been well documented, including the effects of blood glucose variation on mood (Penckofer, 2012) and increased comorbid depression among diabetics (Anderson, 2001). For my thesis project, I have created a connected system of physical and digital tools called the t1D Suite that addresses the unique emotional needs of people with diabetes, thereby bridging the gap between life-giving treatment and life-enriching experience.Item Effects of school re-entry programs on school-age individuals with chronic illnesses post-hospitalization(2019-10-30) Carberry, Caroline; Stark, Kevin DouglasChildren with chronic illnesses are at risk for a variety of negative outcomes. They have lower rates of academic achievement, less school engagement, fewer peer connections, and poorer psychological outcomes (Gottfried, 2014; Martinez & Ercikan, 2009; Kaffenberger, 2006). School re-entry after a hospitalization provides a unique opportunity for interventions that improve functioning in students with chronic illnesses. Currently, there is no established evidence-based standard of care around hospital to school transitions. The proposed study aims to determine quantitatively which type of school re-entry program has the most significant impact on school, social, and psychological outcomes for chronically ill children and adolescents in order to determine the optimal school re-entry program model. This proposed study uses a randomized control design with a sample of hospitalized patients at Dell Children’s Medical Center to determine the impact of 3 different school re-entry programs (presentations to school staff, presentations to healthy peers, and educational liaison programs) on school, social, and psychological functioning over time for chronically ill children and adolescents. Variables will be a mixture of caregiver and child report measures and school outcomes. A repeated measures multiple analysis of variance (MANOVA) will be used to investigate the impact of treatment condition on academic, social, and psychological outcomes over time. This study would determine the benefit of school re-entry liaison programs and school presentations within a general hospital setting. It would also contribute to the establishment of an evidenced-based intervention to address some of the psychological, social, and academic challenges that youth with chronic illnesses face after hospitalizationsItem Health-promoting behaviors in Thai persons with chronic renal failure(2010-12) Polsingchan, Sarinya; Acton, Gayle Jane, 1951-; Becker, Heather; Volker, Deborah; Garcia, Alexandra; Sritanyarat, WanapaThe purpose of this cross-sectional, descriptive, correlational study was to describe the relationships among demographic factors (age, gender, education, income), perceived severity of illness, perceived barriers to action, perceived self-efficacy, and interpersonal influences (social support) and health-promoting behaviors (HPB) and to identify predictors of HPB. A nonprobability sample of 110 participants with Chronic Renal Failure (CRF) was recruited from the outpatient clinic of Burirum hospital and Surin hospital located in north-eastern Thailand. All participants were individually interviewed by the principal investigator in a private area within an outpatient clinic. Six variables were significantly correlated with the HPB. They were age, education, perceived severity of illness, perceived barriers to action, perceived self-efficacy and social support. According to the results from the analyses of demographic data and HPB, participants who were younger and had higher educational levels practiced more HPB. From the analyses of perceived severity of illness, perceived barriers to action, perceived self-efficacy, and social support and HPB, the results showed that participants with lower levels of perceived severity of illness and lower levels of perceived barriers to action reported better HPB. In contrast, the participants with higher levels of perceived self-efficacy and social support reported better HPB. By using a stepwise multiple regression analysis, two predictors were identified from 8 predictor variables, and those two accounted for 78.2% (p < 0.01) of the variance in HPB. Two variables that contributed significantly to the variance in the HPB were perceived self-efficacy ([beta] =.769, p < 0.01), and social support ([beta] = .162, p < 0.01); whereas age, gender, income, educational level, perceived severity of illness, and perceived barriers did not contribute to the variance in the HPB. The study found that participants who experienced better perceived self-efficacy and social support reported better HPB. In contrast age, gender, income, educational level, perceived severity of illness, and perceived barriers did not enter as predictors in this stepwise regression equation.Item Illness identity, experience, and perceptions as longitudinal predictors of adherence behaviors and health outcomes in adolescent Cystic Fibrosis(2021-05-07) Dell, Jordan Rebecca; Rodriguez, Erin M.People with Cystic Fibrosis (CF) experience considerable symptom and treatment burden on a daily basis. Airway Clearance Therapy (ACT) is one of the most time-consuming treatments and has low rates of adherence. Adherence behaviors are important to address in adolescence, as patients begin to take over responsibility from parents. However, adolescents with CF experience unique barriers to treatment adherence. Their symptoms and treatments can disrupt developmentally-appropriate pursuits like peer relationships and affect identity development. Illness identity describes distinct ways in which chronic illness can be integrated into a patient’s identity, with varying effects on mental health and treatment adherence. Patients’ experience of CF also alters their treatment adherence by affecting beliefs about the necessity and efficacy of their treatments. As such, improving treatment adherence may require considering not only the adolescents’ illness- and treatment-related beliefs, but also the experiences that have informed those beliefs. This study of 120 adolescents with CF recruited from a Central Texas medical center uses regression to determine whether past illness-related health, represented by average pulmonary function, predicts ACT adherence, and whether illness identity and treatment beliefs (Beliefs) mediate the relationship. The study also uses regression to assess whether ACT adherence mediates the relationship between past Beliefs and future pulmonary function. This study would allow clinicians to identify adolescents with uncontrolled illness-related health as at higher risk for developing future maladaptive Beliefs that could affect treatment adherence. It would also provide guidance on targeted interventions for adolescents with chronically poor treatment adherence that take their unique developmental stage into account.Item Patient expertise & self-management(2023-04-21) Tomasky, Stephanie I.; Zhang, Yan (Ph. D. in information and library science); Dillon, AndrewPatient expertise and self-management are terms that have been co-popularized through the success of the Chronic Disease Self-Management Program and Expert Patient Program. This review looks at the intersection of literature that focuses on both patient expertise and self-management. These concepts are not well-defined and the treatment of each of these terms in the literature is diverse and occasionally contradictory, but patient expertise is generally regarded as some form of useful health knowledge and self-management can be understood as a set of behaviors including recognizing, treating, and preventing symptoms of illness. The relationship between these concepts is not established in the literature, so this review poses six potential relationship dynamics based on how they are interrelated within the literature set. Much of the research agrees that patients should be empowered, active, and informed, and these are the goals of operationalizing patient expertise and self-management. However, barriers to these goals include negative provider attitudes, extensive labor burden, and information relevance. In addition to these barriers to achieving the stated goals of this research, the corpus also exhibits significant limitations and gaps including diagnostic specificity, institutionalized verification, assumption of diagnostic onset, and disregarding disability. These limitations inhibit the utility of the research and the gaps call for further research to enhance academic understanding of this topic area.Item Person-centered chronic illness management in the nursing home(2013-08) Garcia, Theresa J. De Hoyos; Brown, Sharon A., 1943-The Baby-boom generation, a major contributor to an unprecedented increase in older-aged people, is known for its zest for life and autonomy. Boomers are predicted to enter nursing homes in record numbers with multiple chronic illnesses and person-centered health care expectations. The purpose of this work was to describe current chronic illness management practices in nursing homes focused on person-centered (resident-directed) care and involvement of residents in health-related decision-making and self-care activities. Four projects were undertaken to accomplish this objective: (1) a systematic review of the quantitative literature regarding the management of type 2 diabetes, an exemplar chronic illness; (2) a synthesis of the qualitative literature describing chronically ill, older-aged adults' perceptions of chronic illness care decision-making; (3) an ethnographic pilot study describing the meaning of having type 2 diabetes to nursing home residents; and (4) a qualitative descriptive study of secondary data describing nursing home stakeholder perceptions of opportunities for resident involvement in chronic illness decision-making and self-care activities. Wagner's Chronic Care Model, modified for the nursing home, was the sensitizing framework for this research. Twenty studies met criteria for the systematic review, which described a lack of adherence to clinical practice guidelines and rare inclusion of the resident and family in management practices. The synthesis of 7 qualitative studies revealed 4 themes: (1) Being recognized because I matter; (2) Awareness of importance; (3) Empower through connections and opportunities; and (4) Time is precious. Cognitively capable older-aged adults described benefits from involvement in health care decisions and harm from non-involvement. They perceived inadequate time spent with health care providers as a major determinant of involvement. The pilot ethnography included 3 residents. Findings revealed a perception of few diabetes management choices but many unspoken resident preferences. The qualitative descriptive secondary analysis study included 5 residents, 7 family members, 8 advanced practice registered nurses, 5 physicians, and 6 administrators. Stakeholders perceived many opportunities for resident involvement in decision-making and self-care, but described as many limitations. Findings indicated a shortage of health care providers and differing stakeholder ideas of purpose and goals restricted resident involvement. Clinical, research, and policy implications were discussed.Item The impacts of recurring supportive interactions on couples’ psychological, relational, and health outcomes in the context of rheumatic diseases(2017-05) Farris, Kristen LeBlanc; Donovan-Kicken, Erin E.; Vangelisti, Anita; Stephens, Keri; Mackert, Michael; Burke, TriciaSupportive communication challenges have been well-documented by previous research in the context of chronic illness management. However, few communication studies have examined the dyadic nature of coping with chronic illnesses through social support. Furthermore, scholarship in this area has often privileged social support as prosocial and has been largely atheoretical in nature (Vangelisti, 2009). Thus, the study set out to address these gaps in the literature and was guided by the theory of illness trajectories (Corbin & Strauss, 1985; 1988), face and politeness theories (Brown & Levinson, 1987; Goffman, 1967) and the stress adaptation model (Lazarus & Folkman, 1984). The purpose of the study was to examine the transactional nature of supportive interactions in the context of rheumatic disorders via testing of two structural models. The path analysis explored associations between frequency of support seeking and quality of provision along with both members’ subsequent psychosocial outcomes. Couples (n = 229) individually completed an online survey and were compensated $10 for their participation. Results indicated patients’ support seeking (as perceived by partners) was negatively associated with quality of support provision (as perceived by patients) and positively associated with partners’ caregiver burden and relational satisfaction. Caregiver burden was negatively related to partners’ subjective physical health and positively related to their psychological distress. Finally, quality of support provision was positively associated with patients’ relational satisfaction and subjective physical health. The variables in the first structural model accounted for 18% of patients’ perceptions of their partners’ quality of support provision and 38% of patients’ relational satisfaction, while the variables in the second structural model accounted for 56% of quality of support provision, 53% of partners’ caregiver burden, 29% of partners’ psychological distress, and 21% of partners’ relational satisfaction. Findings from the study lend credibility to enveloping the construct of social support in the theory of illness trajectories as a form of “work” and suggest that partners view support provision as an arduous task in the context of chronic illness management. The results also provide a more nuanced understanding of the costs and rewards of supportive interactions for both patients and their romantic partners.