Patient engagement in an online coaching intervention for parents of children with suspected developmental delays. (22nd January 2021)

• Record Type: Journal Article
• Authors: Ogourtsova, Tatiana; O'Donnell, Maureen E; Filliter, Jillian H; Wittmeier, Kristy; Majnemer, Annette
• Other Names: Ballantyne Marilyn investigator.; Cohen Eyal investigator.; Collet Jean‐Paul investigator.; Dewan Tammie investigator.; Elsabbagh Mayada investigator.; Hanlon‐Dearman Ana investigator.; Lach Lucyna investigator.; McElroy Theresa investigator.; McGrath Patrick investigator.; McKellin William investigator.; Miller Anton investigator.; Patel Hema investigator.; Rempel Gina investigator.; Shevell Michael investigator.; Spurway Amy investigator.; Prupas Aren investigator.; Costello Carrie investigator.; Evans Rachel investigator.; Evans Ryan investigator.; Brown Sasa investigator.; MacDougall Hana investigator.
• Is Part Of: Developmental medicine & child neurology. Volume 63:Number 6(2021)
• Page Start: 668
• Page End: 674
• Publication Date: 2021-01-22
• Subjects: Child development -- Periodicals; Pediatric neurology -- Periodicals; 616.8
• DOI: 10.1111/dmcn.14810
• Languages: English
• ISSNs: 0012-1622

Abstract

Abstract : Aim: To evaluate patient engagement processes in the development of a new health coaching intervention for parents of children with suspected developmental delays. Method: A cross‐sectional mixed‐method study design was used. Researchers ( n =18) and patient‐partners ( n =9) were surveyed using the Public and Patient Engagement Evaluation Tool (PPEET) in areas of: (1) communication/supports for participation; (2) sharing views/perspectives; (3) impacts/influence of engagement initiative; and (4) final thoughts/satisfaction. Descriptive statistics and an inductive thematic‐based approach were used to analyse the data. Results: For both study groups, high agreement, with responses largely ranging between 'agree' to 'strongly agree', was noted on all four sections of the PPEET. Qualitative reports reflected that patient engagement was important, meaningful, and had a significant impact on the quality of the project and on the professional development of researchers in their understanding and use of patient‐oriented methodology. Patient‐partners noted challenges related to having realistic deadlines in providing feedback and a lack of a broader range of representation among members. Interpretation: The benefits and challenges of applying patient‐oriented strategies to a multicentre trial were highlighted. These will be used to enhance our engagement processes. What this paper adds: Researchers and patient‐partners reported successful and beneficial patient engagement. Enablers included members' commitment, communication, partnership, and supports. Engagement barriers were mainly reported by patient‐partners rather than researchers. Barriers included communication issues, group homogeneity, and task management difficulties. Patient engagement enhanced the relevance and quality of the research project. What this paper adds: Researchers and patient‐partners reported successful and beneficial patient engagement. Enablers included members' commitment, communication, partnership, and supports. Engagement barriers were mainly reported by patient‐partners rather than researchers. Barriers included communication issues, group homogeneity, and task management difficulties. Patient engagement enhanced the relevance and quality of the research project. This article is commented on by Rethorn on page 631 of this issue. Editor's Choice The current COVID‐19 pandemic has placed a disproportionate additional burden on children with disabilities and their family. 1 This experience has also highlighted the crucial role of parents in delivering intervention, 2 the value of coaching, 3 as well as the importance of quality online resources to that effect. 4 My Editor's Choice for the June issue focuses on engagement of expert partners with lived experience in developing an online coaching intervention for caregivers children with a suspected developmental problem. Video Podcast: https://youtu.be/TamlwBgEOf8 This article's abstract has been translated into Spanish and Portuguese. Follow the links from the abstract to view the translations. Participación del paciente en una intervención de coaching en línea para padres de niños con retraso en el desarrollo: Objetivo: Evaluar los procesos de participación del paciente en el desarrollo de una nueva intervención de asesoría/coaching en salud para padres de niños con desafíos de desarrollo emergentes. Método: Se utilizó un diseño de estudio transversal de método mixto. Los investigadores (n = 18) y los pacientes‐socios (n = 9) fueron encuestados utilizando la Herramienta de evaluación del compromiso público y del paciente (PPEET) en áreas de comunicación / apoyos para la participación, intercambio de puntos de vista / perspectivas, impactos / influencia de la iniciativa de compromiso y pensamientos finales / satisfacción. Se utilizaron estadísticas descriptivas y resúmenes temáticos para analizar los datos. Resultados: Para ambos grupos de estudio, en las cuatro secciones del PPEET se observó un alto nivel de acuerdo, con respuestas que oscilaban en gran medida entre "de acuerdo" y "totalmente de acuerdo". Los informes cualitativos reflejaron que la participación del paciente era importante, significativa y tenía un impacto significativo en la calidad del proyecto y en el desarrollo profesional de los investigadores en su comprensión y uso de la metodología orientada al paciente. Los socios‐pacientes señalaron los desafíos relacionados con tener plazos realistas para proporcionar comentarios y la falta de una gama más amplia de representación entre los miembros. Interpretación: Se destacaron los beneficios y desafíos de aplicar estrategias orientadas al paciente a un ensayo multicéntrico. Estos se utilizarán para mejorar nuestros procesos de participación. Engajamento de pacientes em uma intervenção virtual de coaching para pais de crianças com atraso no desenvolvimento: Objetivo: Avaliar os processos de engajamento de pacientes no desenvolvimento de uma nova intervenção de saúde para pais de crianças com desafios desenvolvimentais emergentes. Método: Um estudo de desenho transversal com métodos mistos foi usado. Pesquisadores ( n =18) e parceiros‐pacientes ( n =9) foram entrevistados usando a Ferramenta para avaliação de engajamento de público e paciente (FAEPP) em áreas de comunicação/suportes para participação, compartilhamento de visões/perspectivas, impactos/influência da iniciativa de engajamento, e satisfação/opiniões finais. Estatística descritiva e sínteses temáticas foram usadas para analisar os dados. Resultados: Para ambos os grupos de estudo, alta concordância, com respostas variando de "concordo" a "concordo fortemente" foi notada em todas as quatro seções do FAEPP. Relatos qualitativos refletiram que o engajamento dos pacientes foi importante, significativo, e teve impacto significativo na qualidade do projeto e no desenvolvimento professional dos pesquisadores em seu entendimento e uso de metodologia orientada ao paciente. Pacientes‐parceiros notaram desafios relacionados a ter prazos realísticos no fornecimento de feedback e falta de maior variação da representação entre membros. Interpretação: Os benefícios de desafios de aplicar estratégias orientadas aos pacientes em um estudo multicêntrico foram enfatizados. Estes serão usados para melhorar nosso processo de engajamento.