USING Q-METHODOLOGY TO EXPLORE PREFERENCES FOR CARE OF ADOLESCENTS WITH CHRONIC DISORDERS: 4 PROFILES

INTRODUCTION: Adolescents with chronic disorders are seldom asked to give opinions about their preferences for care, even though they are frequent health care users and soon need to take over the responsibility of managing their own care. OBJECTIVE: The aim of the study was to investigate care-related preferences of adolescents with chronic disorders. METHODS: A Q-methodologic study was conducted in a random sample of 31 adolescents with various congenital and acquired disorders from the total population of Erasmus Medical Center-Agia Sophia Children's Hospital (12–19 years). Adolescents rank-ordered 37 statements about preferences for care and self-care using a quasi-normal distribution. Factor analysis was applied to identify clusters in the Q-sorts, groups of adolescents with common preferences. RESULTS: Four profiles were distinguished: concerned and compliant, backseat patient, opinionated and careless, and worried and insecure. Differences between profiles are related to independence competencies, level of involvement in management of the illness, adherence to therapeutic regimens, and appreciation of their parents' role. All adolescents want to have an important say in treatment-related decisions. Although adolescents are used to being accompanied by their parents in the consultation room, they sometimes prefer to be on their own. CONCLUSIONS: Four different preference profiles were uncovered. Caregivers recognize these profiles in daily practice. Because the goal of Q-methodology is to establish different patterns but not their prevalence, the distribution of profiles will be explored in a large follow-up survey. Additional use of these profiles in daily practice will be also explored, because rank-ordering the statements stimulated adolescents to talk about care issues.