Preferences for health care and self-management among Dutch adolescents with chronic conditions: A Q-methodological investigation

https://doi.org/10.1016/j.ijnurstu.2009.10.006Get rights and content

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.

Section snippets

Background

Adolescents are rarely consulted as health care consumers, even though they are important users of health services whose preferences and concepts of care differ from those of adults (Cavet and Sloper, 2004, Dixon-Woods et al., 1999, Sloper and Lightfoot, 2003). Thus, little is known about priorities, desires and expectations of care from the adolescent perspective (Britto et al., 2004, Farrant and Watson, 2004, Litt, 1998) and (Oppong-Odiseng and Heycock, 1997).

As adolescence is a critical

Method

Investigating a variety of accounts requires a methodology that is designed to identify the similarities and differences in attitudes from ‘within’. Q-methodology (Brown, 1980, Stephenson, 1935) was chosen because it allows identifying preference profiles of adolescents with a variety of chronic conditions sharing common viewpoints and to describe similarities and differences between these profiles.

Response

Of the purposive sample of 66 adolescents who were invited, thirty-one eventually participated. Twenty-four refused (36%) and 11 (17%) could not be reached by phone for a reminder. Thus, 31 (47%) consented to an interview. Most of those who refused said they had no time; some said they were too ill or too occupied with family problems while others were not interested to participate in the study. Parents were very supportive to the study and some even consented though their child refused. A

Discussion

This study demonstrates that not all adolescents with chronic conditions share common ideas about their illness and treatment: some are care-free, others worry about their health. With respect to self-management and adherence to treatment regimens it appears that one group favours ‘a good life’ and autonomy over following a strict regimen; whereas another group is concerned about future consequences of sloppy adherence. A Q-methodological study among young adult renal transplant recipients (

Conclusion

Q-methodology enabled us to identify four general clusters of adolescents with chronic conditions in terms of their priorities and preferences for health care provision, self-management and adherence. Irrespective of individual differences between adolescents, a limited number of distinct preference profiles could be identified. This study demonstrates the value of a non-disease-specific approach, as the preference profiles are recognizable to adolescents with various chronic conditions. There

Acknowledgements

We thank all young people who participated in the study and appreciate the contribution of students from Rotterdam University. Margo Trappenburg and Ko Hagoort are thanked for their thoughtful comments on earlier drafts of this paper.
Conflict of interest

The authors have no conflict of interest to declare.
Funding

This work was funded by ZonMw, the Netherlands organization for Health Research and Development (Grant number 32560005). The sponsor was not involved in the project planning, data

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