Association between quality of life of adolescents with type 1 diabetes and parents’ illness perception as evaluated by adolescents

Abstract

Children and adolescents account for half of all cases of type 1 diabetes, which is one of the most common pediatric chronic diseases. The disease’s effects and the treatment/disease-management protocols patients must follow can lead to a marked deterioration in quality of life, especially for adolescents. Patients’ illness perceptions have been shown to impact their quality of life, but do other people’s illness perceptions also have an effect? The present study addressed this question by investigating possible links between the quality of life of adolescent patients with type 1 diabetes and illness perceptions, measured in terms of the adolescents’ self-perceptions, parents’ self-perceptions, and the adolescents’ evaluations of their parents’ perceptions. We asked 41 adolescents (M = 13.9 years; SD = 1.9) who had been undergoing treatment for type 1 diabetes for at least a year (M = 6.6 years; SD = 3.7) to complete the Diabetes Quality of Life for Youth Questionnaire-Short Form (DQOLY-SF) and the Illness Perception Questionnaire-Revised (IPQ-R). They completed the IPQ-R twice, once to state their own opinions (self-report) and once to give their evaluations of their parents’ perceptions. At the same time, but in a different room, their parents (N = 47) completed the IPQ-R (self-report). Quality of life was predicted by gender (p < .05) and by the parents’ emotional representations (p < .01) and perceptions of consequences (p < .01) as evaluated by the adolescents. This new approach provides new insights into the impact of parents’ perceptions on the quality of life of adolescents with type 1 diabetes.

Keywords:

• Diabetes
• illness perception
• adolescent
• self-evaluation
• parent-evaluation
• quality of life

Acknowledgements

We would like to thank all our participants for agreeing to take part in the study.

Notes

1. Research focusing on adults with type 1 or type 2 diabetes has revealed links between quality of life and gender (Joensen, Almdal, & Willaing, 2016), age, depressive symptoms and family functioning (Wan, He, & Zhao, 2015), and meaning of illness (Walker, Lynch, Strom Williams, Voronca, & Egede, 2015).

2. The model has now been expanded to include nine dimensions of illness perception (Leventhal et al., 1980; Moss-Morris et al., 2002). Identity is how people use symptoms and a disease label to identify an illness. Causes are patients’ beliefs about the origin of their illness (Hagger & Orbell, 2003; Pedinielli, 1996). Timeline covers two dimensions: the acute/chronic timeline refers to how long the illness is expected to last, whereas the cyclical timeline refers to the occurrence of symptoms associated with the illness. Consequences are beliefs about the illness’s effects on one’s personal life, daily activities, and social relations. Control also covers two dimensions: personal control concerns patients’ belief in their ability to control their illness, whereas treatment control concerns beliefs about the effectiveness of the treatment being followed. Emotional representations refer to emotions felt towards the illness (e.g., anger), and feelings caused by the illness (e.g., depression). Illness coherence is the meaning patients’ may or may not give to their illness, in other words, whether the illness is a mystery or understandable.

3. Studies of the link between illness perception and quality of life in adults have shown a positive link between well-being and perceptions of diabetes as being controllable and a negative link between well-being and perceptions of diabetes as something that has a profound impact on life (Eiser et al., 2001). Walker et al. (2015) showed that patients who saw their diabetes as a challenge or who had a hopeful attitude had a better quality of life than those who perceived their diabetes as a loss or threat.

4. Such differences are the result of many factors, including level of prior knowledge, analysis and experience of the disease, social context, and personal characteristics (Diefenbach & Leventhal, 1996; Leventhal et al., 1980). Primary and secondary assessments of the disease as a stressor can differ from one family member to another (Lazarus & Folkman, 1984).

5. To be included in the sample, subjects had to be between 11 and 18 years old and to have been under treatment for type 1 diabetes for at least a year. We excluded patients with other types of diabetes, developmental disorders that could lead to social or cognitive difficulties, or a major psychiatric disorder.

6. For all but two of the adolescents.

7. Items for the first five dimensions were scored on five-point Lickert scales; items for the last dimension were scored on four-point Lickert scales.

8. Using 5-point scales.

9. For example, ‘I get depressed when I think about my diabetes’, ‘My diabetes strongly affects the way others see me’.

10. For example, ‘Her/his diabetes is a serious condition’, ‘Her/his diabetes is a mystery to me’,  ‘Her/his diabetes is very unpredictable’, ‘Her/his actions will have no affect on the outcome of her/his diabetes’.

11. For example, ‘Her/his diabetes makes me feel angry’, ‘Her/his diabetes strongly affects the way others see him/her’.

12. We used a global method to construct the model, including all three diabetes perception measures (adolescents’ self perceptions, adolescents’ parent evaluations and parents’ self perceptions) and covariates in the analysis. We then used a step-by-step method to select the variables retained in the final model.

13. Measured the day of the consultation.

14. Mean level since diabetes was diagnosed.