Preferences for health care and self-management among Dutch adolescents with chronic conditions: A Q-methodological investigation
Received 10 July 2009; received in revised form 6 October 2009; accepted 10 October 2009.
Abstract
Background
Adolescents with chronic conditions have to learn to self-manage their health in preparation for transitioning to adult care. Nurses often struggle with how to approach youth with chronic conditions successfully. Little is known about the preferences and attitudes of these young people themselves.
Objective
To uncover preferences for self-management and hospital care of adolescents with various chronic conditions.
Design and method
A Q-methodological study was conducted. Semi-structured interviews were held with adolescents who rank-ordered 37 opinion statements on preferences for care delivery and self-management. They were asked to motivate their ranking. By-person factor analysis was conducted to uncover patterns in the rankings of statements. The factors were described as preference profiles.
Participants and setting
A purposive sample of 66 adolescents (12–19 years) treated in a university children's hospital in the Netherlands was invited to participate. Thirty-one adolescents, 16 boys and 15 girls with various chronic conditions eventually participated (response 47%). Eight participants (26%) had a recently acquired chronic condition, while the rest (74%) had been diagnosed at birth or in the first 5 years of life.
Results
Four distinct preference profiles for health care delivery and self-management were identified: ‘Conscious & Compliant’; ‘Backseat Patient’; ‘Self-confident & Autonomous’; and ‘Worried & Insecure’. Profiles differ in the level of independence, involvement with self-management, adherence to therapeutic regimen, and appreciation of the parents’ and health care providers’ role. The desire to participate in treatment-related decisions is important to all preference profiles. The profiles are recognizable to adolescents and nurses alike. As Q-methodology allows no inferences with respect to the relative distribution of these profiles in a given population, only tentative hypotheses were formulated about associations between profiles and patient characteristics.
Conclusion
This study increases our understanding of different subjectivities of adolescents living with a chronic condition related to their treatment and health. There is no “one size fits all” approach to adolescent health care, but rather a limited number of distinct preference profiles. This study demonstrates the value of a non-disease-specific approach in that adolescents with various chronic conditions were found to have much in common. The profiles seem a promising tool for nurses to actively seek adolescents’ opinion and participation in health care and will be further explored.
aRotterdam University, Expertise Center Transitions of Care, Rotterdam, The Netherlands
bErasmus Medical Center – Sophia Children's Hospital, Rotterdam, The Netherlands
cErasmus University – Institute of Health Policy & Management, Rotterdam, The Netherlands
Corresponding author at: Institute of Health Policy & Management, Erasmus University, P.O. Box 1738, Office W J8-33, 3000 DR Rotterdam, The Netherlands. Tel.: +31 104088697; fax: +31 104089094.
ABSTRACT