Browsing by Subject "Self-management"

Background

Methods

Results

Conclusion

Systematic review registration

Over the past three decades, advances in the care for children with sickle cell disease (SCD) have increased their life expectancy and necessitated their transition to adult health care. However, there is a limited understating of health care transition in SCD and the impact it has on outcomes beyond perspective on and satisfaction with the process from the perspective of the adolescent and young adult (AYA) and their families. The purpose of this dissertation was to provide a better understanding of health care transitions in AYAs with SCD. This purpose was achieved through an examination of the state of the science on health care transition in AYAs with SCD, the challenges of shifting self-management from the parent to the adolescents with SCD prior to transition to adult care, and the patterns of health care utilization during transition and the factors associated with these patterns.

Findings from our integrative review indicated that few studies examined health care transition in AYAs with SCD. Most of the research on health care transition in AYAs with SCD focused on individual, family support, and the health care domain, yet results are inconclusive. For example, there is evidence that parents were heavily involved in the AYA’s health care. Although this involvement was viewed as supportive by the AYA as well health care providers, it’s not clear how parental involvement and the parent-AYA relationship can be utilized to facilitate health care transition for the AYAs with SCD. In addition, very few studies examined health care transition outcomes or examined how AYAs utilize the health care system to meet their health care needs during transition.

To further understand the parent-AYA relationship in managing SCD, we examined the shifting of management responsibility from the parent to the adolescent with SCD. Our findings indicated that shifting management responsibility is a critical and challenging process. The challenges that adolescents and parents face are adaptive-type challenges, rather than technical-type challenges. While technical-type challenges are easily fixed with technical work, more complex adaptive work is needed to address adaptive-type challenges, making the shifting of management responsibility more complex.

To understand health care transition in AYAs with SCD, we conducted a longitudinal examination of health care utilization for AYAs with SCD during transition to adult care and examined the factors associated with the different trajectory groups. Most AYAs in our sample had low clinic, hospital, and emergency department (ED) utilization trajectories. Few AYAs had high utilization in the clinic, hospital, and/ or ED. However, this group usually accounts for the highest costs of care. The sample mean emergency reliance scores were also below the cutoff point of 0.33 for high ED reliance. However, we did find evidence of increasing reliance on the ED compared to ambulatory care with increasing age indicating that a small group of AYAs with SCD might be at increased risk for high reliance on the ED. Individual, contextual, and transfer related factors were associated with the different health care utilization trajectory groups for AYAs with SCD. These factors varied between the different health care services indicating the complexity of health care utilization in AYAs with SCD and the factors influencing them. Receiving hydroxyurea was the only common predictor between higher clinic and higher hospital utilization trajectory groups, while distance to the sickle cell center was the only common predictor between higher clinic and higher ED utilization trajectory groups. Depression, chronic pain, long-acting narcotics, and chronic transfusion at age 19 predicted higher hospital and higher ED trajectory utilization groups.

A major finding in this study was the association of several mental health conditions, including depression, with health care utilization group membership. This finding underscores the importance of routine screening and adequate management of mental health care conditions in AYAs with SCD, especially during transfer to adult care.

One goal of this dissertation was to describe successful transition. The majority of our sample has transferred to adult care. The mean age at transfer was 19 years. We also examined the continuity of care after transfer and the majority of participants who transferred to adult care had at least one additional encounter in the adult sickle cell clinic, and around 65% had more than ten encounters. Only a few (5.83%) had no adult encounters after transfer. As a result, we considered the vast majority of participants who had at least one encounter in the adult sickle cell clinic to have successfully transferred and integrated into adult care.

Background: Chronic kidney disease (CKD) is a progressive, irreversible condition that affects 15% of the US population, causing poor health outcomes and enormous social and economic burden. Rural and minority populations bear significant disparity in CKD outcome. Self-management of CKD and comorbid conditions is important in slowing the progression of CKD and preventing end stage renal disease.

Methods: This study uses a mixed-methods study design to investigate the association between positive mental health and self-efficacy and to qualitatively explore the dimensions of positive mental health that influence self-efficacy. A cross-sectional study involving 257 individuals was conducted from May to July 2016. Quantitative data collection involved administration of a questionnaire and clinical assessment of kidney function. Participants were asked about their medical history and attitudes on the chronic disease management (self-efficacy for chronic disease management, coping, social support, and perceived stress), and mental health and illness (positive mental health, depression, anxiety, and PTSD). Ordered logistic regression was used to assess the relationship between positive mental health and self-efficacy, controlling for depression, the interaction between positive mental health and depression, and other covariates. Qualitative data collection involved conducting six focus group discussions involving 35 individuals who experience significant life impact due to kidney disease to explore facilitators and barriers of CKD self-management.

Results: Individuals with flourishing positive mental health were significantly more likely to have high self-efficacy compared to individuals with languishing positive mental health (p < 0.001, Figure 10). Overall, in the fully adjusted model, the proportional odds ratio of improved self-efficacy was 2.89 (95% CI 1.29-6.47), all else held constant. For individuals with CKD, the proportional odds ratio of improved self-efficacy was 7.67 (95% CI 2.42-24.29), all else held constant. For individuals without CKD, positive mental health was not a significant predictor of self-efficacy (p-value > 0.05). Qualitative data showed support for the broaden and build theory as a possible mechanism linking positive mental health and CKD self-management. Positive emotions derived from positive mental health allowed individuals to acquire personal and social resources such as resilience, optimism, and social support that encourage self-management of CKD.

Conclusion: These findings suggest that positive mental health should be incorporated into existing CKD self-management programs to fully address the psychosocial needs of patients and effectively encourage sustainable behavioral changes for CKD self-management. Future efforts should focus on identifying positive mental health interventions that builds on the strong familial relationships, and spiritual and religious organizations in the community to improve positive mental health in this population.

Sickle cell disease (SCD) is the most common genetic blood disorder in the United States (US) and Jamaica and primarily affects individuals of African descent. SCD can result in severe and debilitating complications, including vaso-occlusive crises and organ damage. To prevent these complications SCD requires complex self-management. SCD is associated with significantly shortened lifespans in both countries. Many personal and background factors including, perceived stigma, demographics (country, age, race, sex, socioeconomic status) and clinical (disease severity, hydroxyurea use, genotype) characteristics may influence self-management strategies and health-related quality of life (QoL) in SCD. These characteristics have not been explored fully in either country and there are many differences between countries in how SCD is managed and stigma is perceived. This dissertation aims to develop knowledge related to the relationships between SCD self-management, stigma of SCD, and health-related QoL.

A systematic literature review was conducted to appraise the current state of knowledge surrounding stigma of SCD. Conclusions from this review revealed that 1) sources of stigma were varied including institutions, healthcare systems and providers, and interpersonal relationships; 2) stigma had negative impacts on participants’ social, psychological, and physiological well-being; 3) stigma had resulted in poor patient-provider relationships and altered care-seeking behaviors in individuals with SCD, and 4) there are gaps in the literature regarding the influence of sources of stigma on self-management and QoL.

The primary study of this dissertation utilized a cross sectional, convergent parallel mixed methods design (individual interviews and self-report surveys). Participants were interviewed about disease self-management strategies and how sources of stigma influence these strategies. Demographic and clinical characteristics were assessed using questionnaires. Quantitative measures were used to assess perceived stigma [SCD Health-Related Stigma Scale (SCD-HRSS) and Measure of Sickle Cell Stigma (MoSCS)] and health-related QoL [Adult Sickle Cell Quality of Life Measures (ASCQ-Me)]. Because there were no publication using the ASCQ-Me to assess health-related QoL in adults with SCD, aside from psychometric studies, a pilot study was conducted evaluating the feasibility of using the ASCQ-Me prior to the primary dissertation study. Use of ASCQ-Me was determined to be feasible.

There were several important findings in the primary dissertation study. Employment and low disease severity were significant predictors of health-related QoL. Nonetheless, participants reported experiencing stigma from family, friends, and people in the workplace and school that impeded their access to the social support and financial resources needed to effectively self-manage. Self-management strategies were similar between the two countries with the exception of there being less opioid use and a greater focus on nutrition in Jamaica. Lastly, participants in both countries, regardless of demographic and clinical characteristics, reported perceiving stigma from healthcare settings. As a result, they altered their self-management in many ways including avoiding or delaying seeking care and pain management. Findings from this study will be used to generate hypotheses for future studies seeking to improve self-management and QoL of individuals with SCD in the presence of stigma.