‘On Your Own Feet’ Adaptive tasks of adolescents with chronic illness or disability: A content analysis

Summary With the improvements in health care, the majority of children born with a chronic illness or disability (CID) are now surviving into adulthood. To design successful strategies for adjustment to CID, the need to understand the lived experience of adolescents with CID increased. In relation to this need, the research project ‘On Your Own Feet’ was started to map the preferences and competencies for health care of adolescents with CID in the transitional period. Lacking research about the lived experience of Dutch adolescents with CID in combination with the findings of this project formed the motivation to start this study. This study was performed as part of the Master HEPL and aimed to find out in which way the adaptive tasks of the model of Moos and Holahan were applicable to the situation of chronically ill Dutch adolescents, participating in the ‘On Your Own Feet’ research project. Furthermore, it was intended to identify the potential benefits and pitfalls by using secondary data and applying deductive analysis. Qualitative secondary data analysis using content analysis has been applied. Because different health care problems encompass many comparable adaptive tasks a general approach was chosen. First, an extensive literature review was performed to strengthen the background and theoretical framework. Next, 31 interviews with adolescents with CID (12-19 years), collected in the research project ‘On Your Own Feet’, were analysed using the program Atlas.ti. Data have been coded deductively in correspondence with the adaptive tasks of the model. Detailed codes were derived inductively. Four ‘respondent families’ were distinguished: boys, girls, 12-15 years, and 16-19 years. Four adaptive tasks are found most influential: maintaining a positive self-image, managing emotions, relating to family members and friends and managing treatment. School and fellow patients were not covered by the adaptive tasks from the model, but were important for Dutch adolescents. It became clear that the relationships with family members and friends are quite different, and therefore may influence coping skills in a different manner. Girls were more concerned and had more worries in relation to their CID than boys. Older adolescents emphasize the importance of living a normal life more often, and were more independent with respect to treatment than their younger fellow patients. ‘Being normal’ is found the most important theme for Dutch adolescents with CID. While deductive analysis with secondary data is not a commonly applied method, this study demonstrates that this type of analysis may add value, by building on existing theories and improve applicability in practice. Furthermore, the material already available gave the opportunity to analyse a high quantity of material in a short amount of time. Theoretical conservatism and insufficiently highlighted aspects due to the approximation from a different perspective, were found the most important pitfalls that should be taken into account. It may be concluded that the model of Moos and Holahan formed a good starting point to clarify the lived experience of Dutch adolescents with CID. Hereby, the optimism of Dutch adolescents was remarkable. The model may be adjusted by adding the tasks school/work and fellow patients, to make it more applicable in the Netherlands. Furthermore, it has been shown that deductive analysis with secondary data may be valuable in further development of theory and its applicability in practice, as long as the researcher takes the limitations into account. Further research of the complete model is needed to find out the applicability of the other panels in practice.