Hemoglobin A1c (HbA1c) levels have been shown to worsen in adolescence and be related to long-term diabetes complications. Although categories of diabetes control (e.g., ideal, satisfactory, and poor) are routinely used in clinical practice, research has not fully explored whether these categories meaningfully distinguish between different self-management characteristics.
This study examines potential differences in self-management characteristics for youths and their caregivers for three different categories of diabetes control (e.g., ideal, satisfactory, and poor control).
A total of 69 adolescents (35 M/34 F) with type 1 diabetes mellitus (T1DM) (aged 12-17 yr) and their caregivers completed questionnaires of readiness to change the balance of responsibility for diabetes tasks, family responsibility in diabetes management, and self-efficacy for diabetes. A medical record review yielded demographic information, most recent HbA1c level, and health care utilization over the past year.
Youths in the three different categories of diabetes control demonstrated no significant differences on measures of self-management characteristics. Maternal caregivers from the satisfactory control category and youths in the poor control category demonstrated the most consistent responses across various self-management characteristics.
Youths classified in different categories of glycemic control may not be as different in their self-management characteristics as was presumed. Moreover, associations among self-management characteristics were not universal across responders. Therefore, individual assessments of youths' and caregivers' self-management characteristics need to occur independent of the youths' membership in a certain category of diabetes control.
[Show abstract][Hide abstract] ABSTRACT: To examine reliability and validity data for the Family Interaction Macro-coding System (FIMS) with adolescents with spina bifida (SB), adolescents with type 1 diabetes mellitus (T1DM), and healthy adolescents and their families.
Sixty-eight families of children with SB, 58 families of adolescents with T1DM, and 68 families in a healthy comparison group completed family interaction tasks and self-report questionnaires. Trained coders rated family interactions using the FIMS.
Acceptable interrater and scale reliabilities were obtained for FIMS items and subscales. Observed FIMS parental acceptance, parental behavioral control, parental psychological control, family cohesion, and family conflict scores demonstrated convergent validity with conceptually similar self-report measures.
Preliminary evidence supports the use of the FIMS with families of youths with SB and T1DM and healthy youths. Future research on overall family functioning may be enhanced by use of the FIMS.
[Show abstract][Hide abstract] ABSTRACT: This study examined the reliability and validity of items assessing adolescent and parent readiness to change the balance of responsibility for managing type 1 diabetes mellitus (T1DM).
Sixty-nine adolescents with T1DM and their caregivers completed questionnaires assessing readiness to change the balance of responsibility, division of responsibility for diabetes management tasks, self-efficacy, and parenting stress. Stages of change classifications were determined for individual respondents and families.
Participant inclusion in the different readiness to change classifications was associated with the variability in scores for indices of responsibility, self-efficacy, and parenting stress. Adolescent, maternal, and paternal characteristics accounted for differing amounts of variance in predicting readiness to change the balance of responsibility scores.
Individual assessment of youth and caregivers' readiness to change the balance of responsibility for diabetes management tasks may be beneficial to providers during the youths' transition from adolescence to young adulthood.
[Show abstract][Hide abstract] ABSTRACT: To qualitatively explore differences in Leventhal's common sense model (CSM) constructs between youth with type 1 diabetes (T1D) and sickle cell disease (SCD) and between different age groups and level of disease control.
Two structured individual interviews were conducted in 24 youth with T1D (n=12) or SCD (n=12). Patients were between 8 and 21 years of age, had either good or poor disease control, and were seen at an outpatient children's hospital medical clinic.
YOUTH CONCEPTUALIZE THEIR CHRONIC DISEASE IN TERMS OF IDENTITY, CAUSE, TIMELINE, CONTROL, AND CONSEQUENCES: both cognitive and emotional dimensions are apparent. There was considerable contrast between discussions of youth with well- and poorly controlled T1D but little contrast between youth with well- and poorly controlled SCD. Surprisingly, youth with well-controlled T1D mentioned emotions most frequently. No youth with poorly controlled T1D described disease acceptance, but the majority of youth with well-controlled T1D did. Adolescents and young adults with good T1D control appear to understand disease cause, have better illness coherence, and habitually link discussion of symptoms and negative emotions with solutions. Youth with poorly controlled T1D appeared more likely to connect symptoms with negative consequences. Consequences included 1) disease symptoms, 2) the need to perform self-care activities, 3) physical outcomes, 4) health-system activities, 5) emotions, and 6) life impact. Interestingly, sickling crisis was mentioned more frequently by youth with good SCD control than by those with poor SCD control. Youth with SCD are distressed by others' judgmental perceptions and by feeling different from others.
In contrast to previous CSM work, youth with well-controlled T1D in this study discussed emotions more frequently than did those with poor control. Disease perceptions were similar between youth with well- and poorly controlled SCD. Results indicate there are noteworthy cognitive and emotional differences between youth with different types of disease and levels of disease control.
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