Pediatric patient engagement in clinical care, research and intervention development: a scoping review
Abstract Background In the last decades, pediatric patient engagement has received growing attention and its importance is increasingly acknowledged. Pediatric patient engagement in health care can be defined as the involvement of children and adolescents in the decision-making of daily clinical car...
| Main Authors: | , , , , , , , , |
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| Format: | Article |
| Language: | English |
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SpringerOpen
2023-03-01
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| Series: | Journal of Patient-Reported Outcomes |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s41687-023-00566-y |
| _version_ | 1797853787193344000 |
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| author | Lorynn Teela Lieke E. Verhagen Hedy A. van Oers Esmée E. W. Kramer Joost G. Daams Mariken P. Gruppen Maria J. Santana Martha A. Grootenhuis Lotte Haverman |
| author_facet | Lorynn Teela Lieke E. Verhagen Hedy A. van Oers Esmée E. W. Kramer Joost G. Daams Mariken P. Gruppen Maria J. Santana Martha A. Grootenhuis Lotte Haverman |
| author_sort | Lorynn Teela |
| collection | DOAJ |
| description | Abstract Background In the last decades, pediatric patient engagement has received growing attention and its importance is increasingly acknowledged. Pediatric patient engagement in health care can be defined as the involvement of children and adolescents in the decision-making of daily clinical care, research and intervention development. Although more attention is paid to pediatric patient engagement, a comprehensive overview of the activities that have been done regarding pediatric patient engagement and the changes over time is lacking. Therefore, the aim of this study is to provide an overview of the literature about pediatric patient engagement. Methods The methodological framework of Arksey & O’Malley was used to conduct this scoping review. The bibliographic databases Medline, Embase, and PsycINFO were searched for eligible articles. All retrieved articles were screened by at least two researchers in two steps. Articles were included if they focused on pediatric patient engagement, were carried out in the context of clinical care in pediatrics, and were published as full text original article in English or Dutch. Data (year of publication, country in which the study was conducted, disease group of the participants, setting of pediatric patient engagement, used methods, and age of participants) were extracted, synthesized, and tabulated. Results A total of 288 articles out of the 10,714 initial hits met the inclusion criteria. Over the years, there has been an increase in the number of studies that engage pediatric patients. Pediatric patients, especially patients with multiple conditions or oncology patients, were most involved in studies in the United States, United Kingdom, and Canada. Pediatric patients were most often asked to express their views on questions from daily clinical care and the individual interview was the most used method. In general, the extent to which pediatric patients are engaged in health care increases with age. Discussion This scoping review shows that there is an increasing interest in pediatric patient engagement. However, lack of uniformity about the definition of pediatric patient engagement and clear information for clinicians hinders engagement. This overview can inform clinicians and researchers about the different ways in which pediatric patient engagement can be shaped and can guide them to engage pediatric patients meaningfully in their projects. |
| first_indexed | 2024-04-09T19:55:17Z |
| format | Article |
| id | doaj.art-6d908fa11d9d41428095c89197c2a580 |
| institution | Directory Open Access Journal |
| issn | 2509-8020 |
| language | English |
| last_indexed | 2024-04-09T19:55:17Z |
| publishDate | 2023-03-01 |
| publisher | SpringerOpen |
| record_format | Article |
| series | Journal of Patient-Reported Outcomes |
| spelling | doaj.art-6d908fa11d9d41428095c89197c2a5802023-04-03T05:28:52ZengSpringerOpenJournal of Patient-Reported Outcomes2509-80202023-03-017111110.1186/s41687-023-00566-yPediatric patient engagement in clinical care, research and intervention development: a scoping reviewLorynn Teela0Lieke E. Verhagen1Hedy A. van Oers2Esmée E. W. Kramer3Joost G. Daams4Mariken P. Gruppen5Maria J. Santana6Martha A. Grootenhuis7Lotte Haverman8Amsterdam UMC location University of Amsterdam, Emma Children’s Hospital, Child and Adolescent Psychiatry & Psychosocial CareAmsterdam UMC location University of Amsterdam, Emma Children’s Hospital, Child and Adolescent Psychiatry & Psychosocial CareAmsterdam UMC location University of Amsterdam, Emma Children’s Hospital, Child and Adolescent Psychiatry & Psychosocial CareAmsterdam UMC location University of Amsterdam, Emma Children’s Hospital, Child and Adolescent Psychiatry & Psychosocial CareAmsterdam UMC location University of Amsterdam, Research Support, Medical LibraryAmsterdam UMC location University of Amsterdam, Emma Children’s Hospital, Department of General PediatricsDepartment of Community Health Sciences, Cumming School of Medicine, University of CalgaryPrincess Maxima Center for Pediatric OncologyAmsterdam UMC location University of Amsterdam, Emma Children’s Hospital, Child and Adolescent Psychiatry & Psychosocial CareAbstract Background In the last decades, pediatric patient engagement has received growing attention and its importance is increasingly acknowledged. Pediatric patient engagement in health care can be defined as the involvement of children and adolescents in the decision-making of daily clinical care, research and intervention development. Although more attention is paid to pediatric patient engagement, a comprehensive overview of the activities that have been done regarding pediatric patient engagement and the changes over time is lacking. Therefore, the aim of this study is to provide an overview of the literature about pediatric patient engagement. Methods The methodological framework of Arksey & O’Malley was used to conduct this scoping review. The bibliographic databases Medline, Embase, and PsycINFO were searched for eligible articles. All retrieved articles were screened by at least two researchers in two steps. Articles were included if they focused on pediatric patient engagement, were carried out in the context of clinical care in pediatrics, and were published as full text original article in English or Dutch. Data (year of publication, country in which the study was conducted, disease group of the participants, setting of pediatric patient engagement, used methods, and age of participants) were extracted, synthesized, and tabulated. Results A total of 288 articles out of the 10,714 initial hits met the inclusion criteria. Over the years, there has been an increase in the number of studies that engage pediatric patients. Pediatric patients, especially patients with multiple conditions or oncology patients, were most involved in studies in the United States, United Kingdom, and Canada. Pediatric patients were most often asked to express their views on questions from daily clinical care and the individual interview was the most used method. In general, the extent to which pediatric patients are engaged in health care increases with age. Discussion This scoping review shows that there is an increasing interest in pediatric patient engagement. However, lack of uniformity about the definition of pediatric patient engagement and clear information for clinicians hinders engagement. This overview can inform clinicians and researchers about the different ways in which pediatric patient engagement can be shaped and can guide them to engage pediatric patients meaningfully in their projects.https://doi.org/10.1186/s41687-023-00566-yPatient participationPatient involvementPediatricsChronic diseases |
| spellingShingle | Lorynn Teela Lieke E. Verhagen Hedy A. van Oers Esmée E. W. Kramer Joost G. Daams Mariken P. Gruppen Maria J. Santana Martha A. Grootenhuis Lotte Haverman Pediatric patient engagement in clinical care, research and intervention development: a scoping review Journal of Patient-Reported Outcomes Patient participation Patient involvement Pediatrics Chronic diseases |
| title | Pediatric patient engagement in clinical care, research and intervention development: a scoping review |
| title_full | Pediatric patient engagement in clinical care, research and intervention development: a scoping review |
| title_fullStr | Pediatric patient engagement in clinical care, research and intervention development: a scoping review |
| title_full_unstemmed | Pediatric patient engagement in clinical care, research and intervention development: a scoping review |
| title_short | Pediatric patient engagement in clinical care, research and intervention development: a scoping review |
| title_sort | pediatric patient engagement in clinical care research and intervention development a scoping review |
| topic | Patient participation Patient involvement Pediatrics Chronic diseases |
| url | https://doi.org/10.1186/s41687-023-00566-y |
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