Patient Perception, Preference and Participation
The narrative-autobiographical approach in the group education of adolescents with diabetes: A qualitative research on its effects

https://doi.org/10.1016/j.pec.2009.10.020Get rights and content

Abstract

Objective

To introduce a narrative-autobiographical approach in the care and education of adolescents with type-1 diabetes and observe the effects of this novel approach on adolescents’ self-awareness, concern for self-care, and well-being.

Methods

Ninety-four adolescents with type-1 diabetes attending one 9-day summer camp in 2004, 2005, or 2006 participated in structured daily self-writing proposals on diabetes, integrated with daily interactive self-management education. After some months, we sent participants interview-like questionnaires, and two independent researchers performed a qualitative analysis of the 50 answers that were mailed back.

Results

Writing about the discovery of diabetes was, for many, a stressful experience, but with a strong liberating effect. One relevant point was change, which occurred: (a) in the perception of self; (b) in the relationship with others; (c) in the relationship with the disease.

Conclusions

The integration of autobiography in diabetes camps, by adding the value of sharing individual stories to the liberating power of self-writing, can allow the adolescents to overcome their feelings of diversity, and can initiate several changes reflecting increased self-efficacy, maturity, acceptance of the disease and responsibility in self-management.

Practice implications

Self-writing is feasible and well accepted, and provides healthcare professionals a proper way to patient-centered care.

Introduction

In recent years, patient education for the self-management of diabetes and chronic diseases has undergone considerable changes; it is no longer directive and not merely informative, as in the past, since we are now aware that adopting a healthy habit depends less on information and skills than on personal intrinsic motivation to change [1].

Having focused on motivation to change, healthcare professionals dealing with chronically ill patients have adopted several models based on behavior science to understand and facilitate behavioral change: e.g. the trans-theoretical model [2], the social-cognitive model [3], motivational interviewing [4], active listening [5], empowerment [6], and several of these have been included in broader conceptual frameworks conceived for improving the quality of chronic disease care, such as the chronic disease model [7] and patient-centered care [8].

Establishing a therapeutic alliance appears especially difficult with adolescents with type-1 diabetes, who – like those with other chronic conditions – “are doubly disadvantaged, engaging in risky behaviours to at least similar if not higher rates as healthy peers, while having the potential for greater adverse health outcomes from these behaviours” [9]. They often display a degree of carelessness towards diabetes, with consequently far from ideal glycemic control [10], [11], and possible early appearance of micro-vascular disease [12]. An effective education would therefore appear particularly useful for children and adolescents, but, despite multiple efforts, the results are generally inconsistent and unsatisfactory, as summarized in two recent comprehensive literature reviews [13], [14], which conclude, discouragingly, that there is still insufficient evidence to recommend any particular education program. Even a recent RCT based on the social-cognitive theory showed partially positive results on glycemic control, but, quite astonishingly, no effect on reported adherence behaviors [15].

Because emotional disorders are clearly associated with poorer health outcomes, it appears that emotional regulation is a key healthcare target even when diabetes self-care is adequate [16]. In our previous experience of care and education in diabetes summer camps, however, adolescents appeared particularly resistant to revealing to themselves and to others their inner feelings and real concerns.

The narrative-autobiographical approach, introduced as an educational tool first in the humanities [17] and then in medicine as a component of “Narrative-Medicine” [18], determined a thorough evolution in the concepts behind the education and care of people with chronic diseases. It is the educational means by which, through the use mainly of self-writing, one's life-history can be discovered, explored and interpreted by recalling episodes and experiences that are part of one's identity [19]. In a narrative perspective, the disease, especially a chronic one such as diabetes, represents a breakdown that not only imposes changes in day-to-day life, but also poses questions regarding the sense of the existence of the individual, thereby affecting quality of life and subjective well-being, spoiling one's future perspectives and plans. To cope with the problem, the person must understand the experience of being ill, finding and assigning meaning to the condition. Sick individuals must realize and reinterpret their story, their world and their life [20].

The autobiographical approach has proven effective in helping people to reveal, first to themselves and then to others, their needs and feelings related to their condition [21]. Moreover, the possibility of sharing one's stories with a group of peers may add an important value to the individual self-care provided by writing for one's self about one's self.

We therefore adopted this approach with adolescents with type-1 diabetes. Our aim was to observe, using qualitative research, whether a structured autobiographical approach was feasible and welcome in the setting of summer camps with diabetic teenagers, whether this approach could stimulate participants’ self-awareness and understanding of others, and, eventually, whether these changes were associated with increased participants’ interest about self-care and with their well-being. We also aimed at understanding the significance of different autobiographical activities for adolescents with diabetes.

Section snippets

Context

The narrative-autobiographical approach was used during three 9-day summer camps that were run at the end of June in 2004, 2005 and 2006. The location was a small hotel either in Sardinia (2004, 2005) or in Abruzzo (the mountain region near Rome, 2006). The number of participants and their characteristics are shown in Table 1.

The healthcare team that organized and ran the camp is shown in Table 1. Furthermore, several health professionals working in diabetes (trainees, also shown in Table 1)

Results

The number (and percentage) of questionnaires received per year is shown in Table 1. Overall, we sent out 94 questionnaires and received back 50 (53.2%), with a substantially lower response rate in 2004 than in 2005 and 2006.

Table 2 reports the scores given by adolescents to the different writing experiences. Among the proposals repeated in all camps, those which received the lowest scores (with a relatively large variance) were the ones for the first day. The most significant proposals remain

Discussion

We introduced the narrative-autobiographical approach in diabetes education, as a support and integration of biomedical care, and we adopted a qualitative research paradigm to understand the meaning of our approach in the lived experience of adolescents with diabetes. Consistent with this paradigm, the results we have obtained are narrative, and they can tell us which constructs of meaning recur and with which behaviors they may be associated, but not with which frequency they appear, nor any

Acknowledgments

We are grateful to the doctors, nurses, dieticians and other healthcare professionals who helped us in organizing and running the summer camps. We are also grateful to Raffaella Sommacal, president, and Rita Forti, vice-president, ADIG-Lazio (Association of parents of children with diabetes, Rome region), who have contributed to the recruitment of adolescents and to the logistic organization of the camps. We thank GED (Gruppo Educazione Diabete), Sardinia, for their cooperation in organizing

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