BackgroundA systematic literature review was conducted to (a) identify the most frequently used health-related quality of life (HRQOL) models and (b) critique those models.MethodsOnline search engines were queried using pre-determined inclusion and exclusion criteria. We reviewed titles, abstracts, and then full-text articles for their relevance to this review. Then the most commonly used models were identified, reviewed in tables, and critiqued using published criteria.ResultsOf 1,602 titles identified, 100 articles from 21 countries met the inclusion criteria. The most frequently used HRQOL models were: Wilson and Cleary (16%), Ferrans and colleagues (4%), or World Health Organization (WHO) (5%). Ferrans and colleagues’ model was a revision of Wilson and Cleary’s model and appeared to have the greatest potential to guide future HRQOL research and practice.ConclusionsRecommendations are for researchers to use one of the three common HRQOL models unless there are compelling and clearly delineated reasons for creating new models. Disease-specific models can be derived from one of the three commonly used HRQOL models. We recommend Ferrans and colleagues’ model because they added individual and environmental characteristics to the popular Wilson and Cleary model to better explain HRQOL. Using a common HRQOL model across studies will promote a coherent body of evidence that will more quickly advance the science in the area of HRQOL.
The strong relationship between independent decision making and functioning suggests that both aspects are important parts of behavioral autonomy to be assessed by healthcare professionals working with adolescents with type 1 diabetes. Healthcare professionals should encourage parental involvement that facilitates adolescents' independent decision making, which was related to better metabolic control in this study.
Emerging adulthood, a developmental period from late adolescence to the late twenties, is a critical transition for youths with type 1 diabetes. This article proposes a framework for emerging adults with diabetes during this transitional time, integrating theoretical writings on transitions and emerging adulthood with empirical findings from younger adolescents with diabetes, about whom more is known. Key health, developmental, and behavioral outcomes are proposed as well as key influential personal and environmental characteristics. Influential transitional events for this age group are also discussed relative to these outcomes and to personal and environmental characteristics. This framework provides a guide for longitudinal studies on the transition to young adulthood among emerging adults with type 1 diabetes. Identifying key times and influential factors will provide information for designing future effective interventions to improve glycemic control and quality of life for these youths as they transition to adulthood.
Purpose/Objectives The purpose of this report is to describe retention strategies that were useful and those that were not in a longitudinal study of emerging adults. Background of Project A longitudinal study examining the transition to young adulthood among emerging adults with type 1 diabetes, which had success in retention, provided the context for describing retention strategies. Rationale A challenge in longitudinally designed studies is retention of participants since their loss decreases power for statistical analysis. Given that emerging adulthood is a period of instability, retention is particularly challenging among this population. However, longitudinal studies are the best way to understand developmental changes, and it is also important to increase our knowledge of health outcomes during emerging adulthood. Description Retention strategies used in the study are described, including promoting a positive relationship with participants, maintaining contact with participants, having a study staff with good interpersonal skills, using incentives, conveying respect for participants, and employing user-friendly data collection. Outcomes Useful strategies to promote a positive relationship included sending cards and newsletters to participants, maintaining consistency of contact person, and expressing appreciation for participant's time and effort. Useful strategies for maintaining contact with participants included obtaining contact information at every data collection point, maintaining birthdates and chart numbers in tracking data bases, monitoring returned mail, and using Web search engines. Other useful strategies were providing incentives to participants, employing staff with good interpersonal skills, providing participants with choices when appropriate, and employing user-friendly data collection. One strategy, using contests, was not found useful. Conclusions Despite the challenges of conducting longitudinally designed studies with emerging adults, multiple retention strategies can be employed that are useful to retention. Implications It is feasible to conduct longitudinal studies with emerging adults despite the challenges.
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