Pediatric patient engagement in clinical care, research and intervention development: a scoping review. 2023

Lorynn Teela, and Lieke E Verhagen, and Hedy A van Oers, and Esmée E W Kramer, and Joost G Daams, and Mariken P Gruppen, and Maria J Santana, and Martha A Grootenhuis, and Lotte Haverman
Amsterdam UMC location University of Amsterdam, Emma Children's Hospital, Child and Adolescent Psychiatry & Psychosocial Care, Meibergdreef 9, Amsterdam, The Netherlands.

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. 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. 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. 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.

UI MeSH Term Description Entries
D010358 Patient Participation Patient involvement in the decision-making process in matters pertaining to health. Patient Activation,Patient Empowerment,Patient Engagement,Patient Involvement,Patient Participation Rates,Activation, Patient,Empowerment, Patient,Engagement, Patient,Involvement, Patient,Participation Rate, Patient,Participation Rates, Patient,Participation, Patient,Patient Participation Rate
D002170 Canada The largest country in North America, comprising 10 provinces and three territories. Its capital is Ottawa.
D002648 Child A person 6 to 12 years of age. An individual 2 to 5 years old is CHILD, PRESCHOOL. Children
D005006 Ethnicity A group of people with a common cultural heritage that sets them apart from others in a variety of social relationships. Ethnic Groups,Nationality,Ethnic Group,Nationalities
D006268 Health Facilities Institutions which provide medical or health-related services. Facilities, Health,Facility, Health,Health Facility
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000293 Adolescent A person 13 to 18 years of age. Adolescence,Youth,Adolescents,Adolescents, Female,Adolescents, Male,Teenagers,Teens,Adolescent, Female,Adolescent, Male,Female Adolescent,Female Adolescents,Male Adolescent,Male Adolescents,Teen,Teenager,Youths
D014481 United States A country in NORTH AMERICA between CANADA and MEXICO.
D016206 Databases, Bibliographic Extensive collections, reputedly complete, of references and citations to books, articles, publications, etc., generally on a single subject or specialized subject area. Databases can operate through automated files, libraries, or computer disks. The concept should be differentiated from DATABASES, FACTUAL which is used for collections of data and facts apart from bibliographic references to them. Bibliographic Database,Bibliographic Databases,Database, Bibliographic

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