Child/youth, family and public engagement in paediatric services in high‐income countries: A systematic scoping review

Abstract

Background Patient and public engagement in paediatric health‐care decision making is under‐researched, and there is a lack of systematically reviewed literature in this area. Objective To examine the extent, range and nature of published research investigating the engagement of children/youth, families and the public in paediatric service improvement, to summarize key aspects of the research identified and to identify gaps to help inform future research needs. Methods Literature was sought in MEDLINE, EMBASE, PsycINFO and CINAHL. Eligible articles presented research focused on patient, family and public engagement strategies in the paediatric health‐care setting. Two reviewers extracted and charted data and analysed findings using a descriptive numerical summary analysis and a thematic analysis. Results From 4331 articles, 21 were eligible. Most were from the United States. The majority of studies were undertaken in hospital settings and used quantitative methods. Various patient and public engagement strategies/interventions were examined, including shared decision‐making tools, questionnaires, youth councils/family advisory groups, patient portals and online networks. Most of the studies examined child/youth/parent satisfaction, with fewer investigating treatment outcomes or service improvement. The majority of studies investigated an engagement strategy at the ‘individual treatment’ level of engagement. Regarding the continuum of engagement, most of the studies were at either the ‘consultation’ or ‘involvement’ stage. Conclusion Future research needs to focus on the investigation of engagement strategies delivered in primary care, and the use of more qualitative and mixed methods approaches is recommended. There is a gap in the area of engagement strategies directed towards ‘service design and resources’ and ‘macro/policy’ levels.

Patient–public engagement interventions for health system improvement in Sub‐Saharan Africa: A systematic scoping review protocol

“…Mainly, this stage is characterised by shared power and responsibility between health professionals and lay citizens working together as partners to design, manage and improve health care services. 36,39 On the levels of engagement, studies classified at the 'individual treatment' level will focus on individual patient's attendance at the health facility, online patient portals or direct care of the individual patient. Studies classified at the 'service design' level will mainly focus on engagement at the wider service level rather than an individual treatment level.…”

“…Lastly, at the macro policy/strategic level, studies classified here will mainly involve those that investigated PPE at the national government level or focused on policy and strategies at the higher political levels. 37,39 Furthermore, building on this framework, this review will also categorise the facilitators and barriers of PPE into individual-level factors, community-level factors, and macro/strategic-level factors as applied by George et al 23…”

“…Particularly, all identified studies will be mapped onto a framework of engagement model adapted from Arnstein's ladder of participation 34 which describes stages of engagement in a continuum, and Charles and DeMaio's 35 multidimensional framework of levels of engagement in health care decisions. This framework (Table 1), which has also been successfully applied by other scholars in different research settings, 36–39 will be specifically applied to describe the variety of outcomes of the PPE interventions; and characterise the levels at which PPE is operating for health system improvement. The first stage on the continuum, ‘consultation’, is described as the weakest form of engagement because it provides patients/public an opportunity to only express their opinions/views or share information to improve the health care system, with no assurance of getting these information considered for health system improvement.…”

Adolescents' experiences with patient engagement in respiratory medicine

“…In the field of respiratory conditions, a variety of organizations have been successful in involving (adult) patients in international scientific congresses, 13 task forces, research (priority) studies, 14–18 and international consortia 7,19 . Despite the growing awareness of its value, the pediatric perspective is often overlooked and there is a lack of knowledge of how to engage children in a meaningful way at an organizational level 20 . Practice shows that youth engagement in hospital settings is not simple 21 .…”

“…7,19 Despite the growing awareness of its value, the pediatric perspective is often overlooked and there is a lack of knowledge of how to engage children in a meaningful way at an organizational level. 20 Practice shows that youth engagement in hospital settings is not simple. 21 "Adulteration" (dominance of adult perspectives), tokenism (making only a symbolic effect to be inclusive), and pseudo-participation have been observed as common pitfalls for professionals initiating child participation.…”