Browsing by Subject "Young adult"

Peer support is one theoretically grounded and developmentally informed approach to support the unique psychosocial challenges faced by adolescents and young adults (AYAs) living with childhood onset chronic conditions (COCCs). Working alliance is presented as one well-established construct to understand the underlying mechanisms of peer support in this population. This exploratory study sought to describe the working alliance trajectory in a peer support intervention for AYAs with a COCC.

The present study was a substudy of a randomized controlled trial examining the efficacy of a one-to-one telephone-based peer coaching intervention for AYAs with a COCC designed to promote self-management and patient activation. The present study aimed to describe the working alliance trajectory from the perspective of the AYA over the first four coaching sessions and to examine AYA, peer coach, and dyadic characteristics (gender, age, race, COCC category) that influence the working alliance trajectory. This study also utilized qualitative analyses to describe core aspects of the AYA-peer coach relationship over time. AYAs completed a self-report measure to assess their perceived working alliance following the first four peer coaching sessions. For 32 AYA-peer coach dyads, linear random coefficient regression models for longitudinal data were conducted to describe the trajectory of overall working alliance across the first four coaching sessions. AYAs perceived a strong working alliance in the first peer coaching session, which was maintained across three subsequent sessions. There were no significant differences in working alliance trajectory across AYA, peer coach, and dyadic characteristics. Although not significantly significant, a trend emerged in which AYAs and peer coaches with the same COCC had a decrease in working alliance over time, while AYAs and peer coaches with a different COCC had an increase in working alliance over time. Qualitative findings revealed themes describing peer coach skills consistent with the working alliance construct (warmth/empathy/genuineness, alignment with AYA’s goals) as well as the ability to integrate similar experiences to build a trusting relationship and provide support, which may be unique to the peer relationship. Findings from the present study serve as a foundation for future efforts to capture the underlying mechanisms of peer support for AYAs with a COCC, which can inform the design of research and clinical programming that effectively leverage peer support to promote outcomes.

Adolescence is a period marked by tremendous social, emotional and physical changes; however, adolescents and young adults (AYAs) with intellectual disability (ID), who must navigate this period with limitations in intellectual and adaptive functioning, face additional difficulties. Much remains unknown about their health care transition (HCT) experiences and their health and well-being as they transition into adulthood; therefore, this study examined the HCT, health status, and functional outcomes of AYAs with ID.

This study incorporated both an individual and population approach to understand needs of AYAs with ID. First, within Chapter 1, a qualitative descriptive design study with semi-structured individual interviews with 16 parent participants was used. We utilized purposive sampling of parents with variation on race/ethnicity and AYA age, stage in transition, and condition; and we utilized content analysis. In Chapter 2, we developed a new method for identifying individuals with ID within large, population-level studies not targeted on ID. We used a secondary analysis of the de-identified, restricted-use National Longitudinal Study of Adolescent to Adult Health (Add Health) database representing 20,745 adolescents to develop a method for identifying individuals who meet criteria of ID. The Add Health ID Indicator was developed from the variables indicative of intellectual and adaptive functioning limitations available within the Add Health database. Through this method, we identified 441 AYAs with ID. Lastly, in Chapter, a descriptive, correlative study utilized the Add Health database and Add Health Indicator to examine the health status and functional outcomes among 254 AYAs with ID.

Our study illuminates the need for (a) improved infrastructure to provide effective HCT and (b) partnerships to help integrate HCT support within other life course systems. Our results support the rationale for a noncategorical HCT-focused approach as well as a parent-peer, coach-facilitated intervention for bridging the gap between systems and meeting family needs. By examining the Add Health ID sample, we identified a decline in health status from adolescence to adulthood among the AYAs with ID, demonstrating that their transition to adulthood is a period during which prevention of obesity and interventions to improve health status should be targeted. The disability-, adolescent-, and family-related factors associated with health status and functional outcomes among AYAs with ID can inform further research, tailoring of interventions, and policies. Researchers can utilize the data-driven method we developed with commonly available data elements in nationally representative datasets to leverage existing rich data sets in order to identify individuals with ID. These data sets, including Add Health, hold significant potential for answering research questions, guiding policy, and informing interventions to improve the health of the ID population.

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.

Survivorship of adolescents and young adults with cancer (AYAC) has for the last decade been a critical issue in pediatric oncology. Some studies have emphasized the importance of a positive health approach for AYAC, enhancing strengths and resources necessary to successfully address life-long challenges during and after treatment. Human flourishing (HF), a life-long process to achieve “uniqueness, dignity, diversity, freedom, happiness, and holistic well-being of the individual” (National League for Nursing, 2014, p. 1), can work as an excellent target for health care that addresses the unique needs of AYAC. However, the concept of HF has received scant attention in the field of pediatric and young adult oncology and has been applied in a very limited fashion to AYAC. Thus, this dissertation explored the concept of HF in AYAC and developed a concept-based targeted intervention using a Multiphase Optimization Strategy (MOST) Framework.

To gain a better understanding of the concept of HF in the context of AYAC, we conducted three different studies: (1) a concept analysis of HF in AYAC; (2) an exploratory study of HF in AYAC from pediatric oncology professionals’ perspectives (N=17), and; (3) a prototype intervention development and single case feasibility and acceptability study. We found critical attributes of HF in AYAC and developed a preliminary conceptual model. Based on the findings of two previous studies, a literature review, and individual/focus group discussions with experts, we developed a dyadic storytelling intervention between a nurse and a patient. To test this intervention’s feasibility and acceptability, we applied the prototype intervention to a single dyad of an adolescent with cancer and a pediatric oncology nurse. Data suggest that the intervention is feasible and acceptable. We will revise the program and conduct a large-scale pilot study as a next step.

The findings from this dissertation study explore and contribute to the knowledge generation surrounding the critical attributes of HF in AYAC and develop a preliminary conceptual framework. Additionally, this study represents a very early step in the translation of knowledge on HF to nursing care for AYAC. As we continue to develop the intervention in the future, we will explore diverse participants’ experiences and perspectives of flourishing while undergoing cancer treatment.