End‐user involvement in a systematic review of quantitative and qualitative research of non‐pharmacological interventions for attention deficit hyperactivity disorder delivered in school settings: reflections on the impacts and challenges

Abstract

BackgroundThe benefits of end‐user involvement in health‐care research are widely recognized by research agencies. There are few published evaluations of end‐user involvement in systematic reviews.Objectives(i) Describe end‐user involvement in a complex mixed‐methods systematic review of ADHD in schools, (ii) reflect on the impact of end‐user involvement, (iii) highlight challenges and benefits experienced and (iv) provide suggestions to inform future involvement.MethodsEnd‐users were involved in all stages of the project, both as authors and as members of an advisory group. In addition, several events were held with groups of relevant end‐users during the project.ResultsEnd‐user input (i) guided the direction of the research, (ii) contributed to a typology of interventions and outcomes, (iii) contributed to the direction of data analysis and (iv) contributed to the robustness of the syntheses by demonstrating the alignment of interim findings with lived experiences. Challenges included (i) managing expectations, (ii) managing the intensity of emotion, (iii) ensuring that involvement was fruitful for all not just the researcher, (iv) our capacity to communicate and manage the process and (v) engendering a sense of involvement amongst end‐users.ConclusionsEnd‐user involvement was an important aspect of this project. To minimize challenges in future projects, a recognition by the project management team and the funding provider that end‐user involvement even in evidence synthesis projects is resource intensive is essential to allow appropriate allocation of time and resources for meaningful engagement.

Interventions to improve the mental health of children and young people with long-term physical conditions: linked evidence syntheses

“…236,237 Incorporating the knowledge and experiences of these groups into each stage of a project's conceptualisation, development, implementation and dissemination of findings ensures that the research remains relevant and accessible to the people whom it is intended to benefit. 238 Thompson Coon et al 239 conceptualise end-user involvement to include not only service users, carers and service user representatives, typically considered in the literature to exemplify patient and public involvement, but also health and social care professionals who may utilise the research findings in their daily practice. 240 A full account of the involvement of topic experts, including psychiatrists, psychologists, paediatricians, young people and parents at each stage of this project can be found in Report Supplementary Material 4.…”

Patient-oriented research competencies in health (PORCH) for researchers, patients, healthcare providers, and decision-makers: results of a scoping review

“…Understanding Evidence and Results: Patients understand evidence, its use and impact, and what can (or cannot) be achieved through research (47,57,62); understand the meaning of data (62), the full impact of study interventions (76), and can assess quality in research effort and outcomes (38).…”

“…Teamwork/Group Process: Patients can define their own role in the research project (29,46) and raise issues important to patients (29); work effectively in a group to keep a patient-centred approach at the forefront of the team's awareness (63) and provide feedback to the team (29); build relationships (56) or teams (80); mentor others (23); mediate in the group setting (23); and handle intense emotions with those who have differing views (57).…”

“…Teamwork -Group Process Skills: Researchers are able to build trusting relationships (28,50,53,55,56); to facilitate, mediate and encourage others in a group meeting (56); to create safe/supportive team atmospheres (33); clarify roles for each member of the research team (21,28,38,46,52); manage expectations (57); provide feedback to team members (21); manage differences by handling intense emotions (57); and, express differences in a productive manner (16). In some cases, researchers also have group process skills to be able to conduct focus groups (22).…”

Meta-Analysis of Complex Interventions

“…Various modes and methods exist to engage stakeholders in review processes (1,56). Although little evidence to date has measured the benefits and trade-offs of specific approaches (23), chosen approaches should be properly resourced and supported to obtain the full benefits of engaging stakeholders (22,72).…”