“What we want”: chronically ill adolescents’ preferences and priorities for improving health care

AnneLoes van Staa1,2, Susan Jedeloo1, Heleen van der Stege1, On Your Own Feet Research Group1,31Expertise Center Transitions of Care, Rotterdam University, 2Institute of Health Policy and Management, Erasmus University Rotterdam, 3Department of Pediatrics, Sophia Children’s Hospital, E...

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Main Authors: van Staa A, Jedeloo S, van der Stege HA, On Your Own Feet Research Group
Format: Article
Language:English
Published: Dove Medical Press 2011-06-01
Series:Patient Preference and Adherence
Online Access:http://www.dovepress.com/ldquowhat-we-wantrdquo-chronically-ill-adolescentsrsquo-preferences-an-a7692
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author van Staa A
Jedeloo S
van der Stege HA
On Your Own Feet Research Group
author_facet van Staa A
Jedeloo S
van der Stege HA
On Your Own Feet Research Group
author_sort van Staa A
collection DOAJ
description AnneLoes van Staa1,2, Susan Jedeloo1, Heleen van der Stege1, On Your Own Feet Research Group1,31Expertise Center Transitions of Care, Rotterdam University, 2Institute of Health Policy and Management, Erasmus University Rotterdam, 3Department of Pediatrics, Sophia Children’s Hospital, Erasmus MC University Medical Center, Rotterdam, The NetherlandsBackground: As important users of health care, adolescents with chronic conditions deserve to be consulted about their experiences and expectations. This study aimed to explore chronically ill adolescents’ preferences regarding providers' qualities, and outpatient and inpatient care. Furthermore, suggestions for improvement of service delivery were collected.Methods: This research was a sequential mixed methods study in adolescents aged 12–19 years with various chronic conditions treated in a university children’s hospital. Methods comprised 31 face-to-face interviews at home, a hospital-based peer research project in which nine adolescents interviewed 34 fellow patients, and a web-based questionnaire (n = 990). Emerging qualitative themes were transformed into questionnaire items.Results: Having “a feeling of trust” and “voice and choice” in the hospital were central to these adolescents. Regarding providers’ qualities, “being an expert” and “being trustworthy and honest” were ranked highest, followed by "being caring and understanding”, "listening and showing respect", and “being focused on me”. Regarding outpatient consultations, preferences were ranked as follows: “answering all questions”; “attending to my and my parents’ needs”; and “clear communication”, while “limited waiting times” and “attractive outpatient surroundings” scored lowest. Regarding hospitalization, adolescents most preferred to “avoid pain and discomfort”, “keep in touch with home”, and “be entertained”, while “being hospitalized with peers” and “being heard” were least important. Regarding priorities for improvement, 52% of the respondents felt that more attention should be paid to older children, followed by enabling more contact with family and friends (45%), shorter waiting times (43%), and more activities to meet fellow patients (35%).Conclusion: Adolescents prefer technically competent providers, who are honest and trustworthy, and attend to their needs. As they gradually grow out of the pediatric environment, they desire staff attitudes to become less childish and more age-appropriate, and welcome being treated as an equal partner in care. Health care professionals should inquire into preferences and adjust their communication style accordingly.Keywords: chronic illness, patient participation, mixed methods research, hospital care
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spelling doaj.art-25e5b9206cfa455080bc404d8eb1649c2022-12-21T18:50:28ZengDove Medical PressPatient Preference and Adherence1177-889X2011-06-012011default291305“What we want”: chronically ill adolescents’ preferences and priorities for improving health carevan Staa AJedeloo Svan der Stege HAOn Your Own Feet Research GroupAnneLoes van Staa1,2, Susan Jedeloo1, Heleen van der Stege1, On Your Own Feet Research Group1,31Expertise Center Transitions of Care, Rotterdam University, 2Institute of Health Policy and Management, Erasmus University Rotterdam, 3Department of Pediatrics, Sophia Children’s Hospital, Erasmus MC University Medical Center, Rotterdam, The NetherlandsBackground: As important users of health care, adolescents with chronic conditions deserve to be consulted about their experiences and expectations. This study aimed to explore chronically ill adolescents’ preferences regarding providers' qualities, and outpatient and inpatient care. Furthermore, suggestions for improvement of service delivery were collected.Methods: This research was a sequential mixed methods study in adolescents aged 12–19 years with various chronic conditions treated in a university children’s hospital. Methods comprised 31 face-to-face interviews at home, a hospital-based peer research project in which nine adolescents interviewed 34 fellow patients, and a web-based questionnaire (n = 990). Emerging qualitative themes were transformed into questionnaire items.Results: Having “a feeling of trust” and “voice and choice” in the hospital were central to these adolescents. Regarding providers’ qualities, “being an expert” and “being trustworthy and honest” were ranked highest, followed by "being caring and understanding”, "listening and showing respect", and “being focused on me”. Regarding outpatient consultations, preferences were ranked as follows: “answering all questions”; “attending to my and my parents’ needs”; and “clear communication”, while “limited waiting times” and “attractive outpatient surroundings” scored lowest. Regarding hospitalization, adolescents most preferred to “avoid pain and discomfort”, “keep in touch with home”, and “be entertained”, while “being hospitalized with peers” and “being heard” were least important. Regarding priorities for improvement, 52% of the respondents felt that more attention should be paid to older children, followed by enabling more contact with family and friends (45%), shorter waiting times (43%), and more activities to meet fellow patients (35%).Conclusion: Adolescents prefer technically competent providers, who are honest and trustworthy, and attend to their needs. As they gradually grow out of the pediatric environment, they desire staff attitudes to become less childish and more age-appropriate, and welcome being treated as an equal partner in care. Health care professionals should inquire into preferences and adjust their communication style accordingly.Keywords: chronic illness, patient participation, mixed methods research, hospital carehttp://www.dovepress.com/ldquowhat-we-wantrdquo-chronically-ill-adolescentsrsquo-preferences-an-a7692
spellingShingle van Staa A
Jedeloo S
van der Stege HA
On Your Own Feet Research Group
“What we want”: chronically ill adolescents’ preferences and priorities for improving health care
Patient Preference and Adherence
title “What we want”: chronically ill adolescents’ preferences and priorities for improving health care
title_full “What we want”: chronically ill adolescents’ preferences and priorities for improving health care
title_fullStr “What we want”: chronically ill adolescents’ preferences and priorities for improving health care
title_full_unstemmed “What we want”: chronically ill adolescents’ preferences and priorities for improving health care
title_short “What we want”: chronically ill adolescents’ preferences and priorities for improving health care
title_sort amp ldquo what we want amp rdquo chronically ill adolescents amp rsquo preferences and priorities for improving health care
url http://www.dovepress.com/ldquowhat-we-wantrdquo-chronically-ill-adolescentsrsquo-preferences-an-a7692
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