Patient engagement in an online coaching intervention for parents of children with suspected developmental delays
Abstract
enAim
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.
Participación del paciente en una intervención de coaching en línea para padres de niños con retraso en el desarrollo
esObjetivo
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
ptObjetivo
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.
What this paper adds
en
- 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.
Abbreviations
-
- CHILD-BRIGHT
-
- Child Health Initiatives Limiting Disability – Brain Research Improving Growth and Health Trajectories
-
- PAG
-
- Parent advisory group
-
- PPEET
-
- Public and Patient Engagement Evaluation Tool
The Canadian Institutes of Health Research Strategy for Patient-Oriented Research initiatives require the active involvement of patients and the public at all stages of research.1 The engagement of patient-partners is suggested to improve the pertinence and overall quality of research by ensuring that the research team focuses on issues that are important to patients.2, 3 These invaluable team members can be involved in all phases of the research process, including but not limited to: developing and prioritizing patient-centered research questions and objectives; assisting with guidance in relation to study design; selecting outcome measures; ensuring readability and usability of surveys, questionnaires, and intervention material; developing parts of the intervention strategies; advising on recruitment techniques; and commenting on and developing knowledge translation material.4, 5 Previous work on patient engagement in health care research revealed several perceived benefits and certain challenges of these partnerships from various team members,4 highlighting the need to evaluate these efforts and their impacts to ensure that team members are satisfied with the role and authenticity of the engagement.
In the field of childhood disability, patient engagement and patient-oriented research strategies can mean involving the child and/or young person and/or the parent/caregiver as partners in research and is central to enhancing the family-centeredness of research protocols.6 In Canada, as many as 850 000 children face lifelong challenges due to the differences stemming from the developing brain. In relation to that, the Child Health Initiatives Limiting Disability – Brain Research Improving Growth and Health Trajectories (CHILD-BRIGHT) Network (www.child-bright.ca) is a Canadian Institutes of Health Research-funded chronic disease network that is part of Canada's Strategy for Patient-Oriented Research initiatives. This network is composed of patients, families, researchers, clinicians, policymakers, and other key stakeholder groups working together to improve health care systems, practices, and knowledge, thereby ensuring better outcomes for affected children and their families.
One of CHILD-BRIGHT's 13 research projects, BRIGHT Coaching, is a randomized clinical trial that aims to evaluate the efficacy, cost-effectiveness, and feasibility of an online health coaching program for parents of children with suspected developmental delays, as compared to usual and locally available care, in improving parent empowerment and related outcomes.7 The BRIGHT Coaching program consists of 14 themes/sessions (Fig. S1, online supporting information). The intervention is based on three pillars to help guide and support families with a child with suspected developmental challenges who is on a waiting list for services: (1) ‘Talk’–to a trained coach while waiting for services/care; (2) ‘Learn’–how to support your child and promote child development via coaching sessions and online resources focused on what to expect and how to be proactive with skill development; and (3) ‘Share’–connect with other Canadian parents via the online community discussion board where they can share experiences and knowledge.
In the context of our project, the term ‘patient engagement’ refers to engaging the parents/caregivers of children with disabilities. Within the BRIGHT Coaching research project, a parent advisory group (PAG) composed of nine parents recruited from across Canada who have children with disablities was established over a period of 9 months (March–December 2017). In the development of the BRIGHT Coaching intervention and beyond, patient engagement strategies were employed at the level of intervention co-creation and implementation.
Given the high priority of patient and public involvement within the BRIGHT Coaching research project and overall Strategy for Patient-Oriented Research mandate, it is important that the processes and impacts of patient engagement on health services research are evaluated. More specifically, in 2014, in their first international systematic review reporting the impacts of patient and public involvement across all health and social care research, Brett et al.4 recommended teams to report a detailed description of patient engagement and view it as a complex process that requires evaluation. Through a comprehensive identification of factors that promote or inhibit successful patient engagement, we can enhance our understanding of the engagement context and process, and thereby improve our methods. In the case of the BRIGHT Coaching trial, where recruitment spans across different Canadian provinces and where team members, including parent-advisors, are predominantly connected virtually (as opposed to a more traditional locally composed group), patient engagement was anticipated to be challenging. It was also deemed important for our team to assess patient engagement during the trial, rather than at the end, to strengthen the possibility of enhancing our processes in the last crucial phases of the project (i.e. finding dissemination, knowledge translation).
Hence, the present study was designed to evaluate the engagement processes and their impacts (perceived benefits and challenges) during the BRIGHT Coaching randomized clinical trial, according to researchers' and patient-partners' perspectives. ‘Engagement processes’ refer to how patient-partners were engaged, undertakings that worked well and that need improvement, and how meaningful the engagement was, and ‘engagement impacts’ refer to the perceived results ensuing from patient engagement, how it affected the selection of research methods and procedures, and how it affected patient-partners (their experiences, knowledge, personal benefits, skills gained, etc.).
Method
Members recruitment and engagement within the BRIGHT Coaching clinical trial
The recruitment of PAG members (using purposeful recruitment techniques of word of mouth and snowball sampling) was initiated by the BRIGHT Coaching site leads in four Canadian provinces (British Columbia, Manitoba, Quebec, Nova Scotia). The BRIGHT Coaching site leads circulated the study/job description to their network of contacts and asked for personal recommendations. The CHILD-BRIGHT Network had interim parent-advisors (involved in the development of the network) who also assisted with recruitment through their personal contacts. The job description provided an overview of what the CHILD-BRIGHT Network is, a brief description of what the team was looking for (two–three parent-representatives for each provincial study center), inclusion criteria, responsibilities outlined, and details regarding financial compensation.
Inclusion criteria were: residency in the province of a study site; having a young child (preferably <10y) with a developmental disability who is medically stable (i.e. >1y post-diagnosis or other major medical treatments); for the parent's own health to be stable; having experience dealing with health, educational, and social services on behalf of their child in their province; and having access to a computer/smartphone and be comfortable with applications such as Skype and FaceTime.
Responsibilities outlined that parent-advisors would meet regularly as a group (virtually or in person), be involved in building and maintaining contact with a socially diverse group of other parents with disabled children and provide advice on different aspects of the study (e.g. recruitment, questionnaires, intervention content and format, online tools, research procedures, publications). The research coordinator of the study and one researcher co-lead the PAG and would seek regular input on various aspects of project development and implementation. The coordinator would act as the conduit between the research team and the PAG.
Potential parent-partners were briefly interviewed via telephone after their application was received and reviewed. No contract was signed outlining commitment; however, parents were encouraged to participate in all aspects of project development and implementation and were free to either briefly disengage or end their engagement at any time. Every 6 months, check-ins were performed with patient-partners to confirm their availability and willingness to continue their engagement with the research project.
PAG engagement activities presented a great advantage for the research team to build a patient partnership from the inception of the study. PAG members were engaged as follows: the PAG validated and provided feedback on the online National Needs Survey, which was administered to Canadian parents of disabled children (n=170) to influence the constituents of BRIGHT Coaching (content, format, frequency, duration, online platform selection and usability, parent manual) in the development of the intervention. PAG members collectively determined themes of relevance and topics of interests for the BRIGHT Coaching intervention. PAG members provided feedback in editing manuals for the coaches and parents. PAG members provided guidance on the development of the peer-support online platform used in the BRIGHT Coaching trial. After testing of several platforms, PAG members selected a user-friendly online platform, which differed from the two options originally considered by researchers. PAG members reviewed and suggested materials for the online resource platform. PAG members reviewed and provided feedback on consent forms, recruitment strategies, and advertisements. PAG members engaged in the selection and review of relevant and feasible outcome measures (readability of questionnaires, relevance of questions, sequence of online measures) and analysis of pilot-phase feasibility outcomes to guide modifications to the study protocol. Two members from each PAG reviewed the patient engagement questionnaire used in the present study and provided feedback, which led to modification of certain questions and addition of three questions. PAG members will be involved in the future interpretation of the BRIGHT Coaching trial's findings and their advice will be sought on the strategies for the dissemination of findings to appropriate target users.
During the development phase, parents collaborated primarily through group emails and teleconferencing that were facilitated by one or two research team members and a study coordinator. Parent-partners were involved in all activities from the outset to provide feedback on content, delivery format, and development of related materials of our intervention. As the project transitioned to recruitment and data collection, collaboration changed to individual emails, texts, and occasional group teleconference calls. Parent-partners worked more locally with their provincial teams to consult/collaborate on recruitment strategies based on their related networks/strengths.
All general project or network-level consultations continued to engage all parent-partners. One example of such involvement is the present project on evaluating patient engagement, where all parent-partners were encouraged to participate. Another example is a project where the network sought to determine the research priorities for the CHILD-BRIGHT Network moving forward. In addition, members of each PAG were offered to meet on their own for check-ins and feedback (virtually via a secure platform or in person) without research personnel present. Those meetings were organized (but not attended) by a study coordinator.
Study design
A cross-sectional, snapshot study design using a mixed approach of qualitative and quantitative methods was used.
Study population
The two populations of interest included: researchers and research personnel who are core members of the BRIGHT Coaching research project (n=18) and members of the PAG (n=9). Team members are located across five Canadian provinces (British Columbia, Manitoba, Ontario, Quebec, Nova Scotia) and BRIGHT Coaching recruitment spans across four Canadian cities: Vancouver, Winnipeg, Montreal, and Halifax. This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Ethics Committee of the Research Institute of the McGill University Health Center (research ethics board no. MP-37-2017-3159, amendment no. F1-44678). Informed consent was obtained from all participants included in the study. All participants signed an informed consent regarding publishing their descriptive data and their statements to open-ended questions (i.e. qualitative reports).
Study procedures
Our research team members and members of the PAG received a weblink; after providing online consent, they were asked to complete their respective questionnaires using REDCap, a secure online platform (https://www.project-redcap.org/). A reminder to complete the questionnaire was sent weekly for 2 weeks. The BRIGHT Coaching national monthly teleconference meeting was used to remind participants to complete the questionnaire.
Measurement of outcomes
Data collection consisted of administering a modified version of a standardized questionnaire, the Public and Patient Engagement Evaluation Tool (PPEET)8 (Appendix S1, online supporting information). This tool has been previously validated, applied in different health care organizations, and more recently refined after a feasibility assessment.9-11 The PPEET is designed to explore existing enablers and barriers related to patient engagement processes, as well as the impacts and influences of patient engagement. The ‘Ongoing/Long Term Engagement Initiative’ section of the PPEET was used in the current study. The questionnaire contains 21 questions/statements for the PAG (5/21 are open-ended, three —questions were added as per feedback by our parent-advisors who reviewed the questionnaire before deployment) and 18 questions/statements for the research team in four categories: (1) communication and support for participation; (2) sharing views and perspectives; (3) impacts and influence of the engagement initiative; and (4) final thoughts. Sixteen questions/statements were rated using a 5-point Likert scale, ranging from ‘strongly disagree’ to ‘strongly agree’ in both versions used (PAG and research team).
Data management and analysis
Responses were collected and stored using the REDCap online platform. Results were exported into a Microsoft Excel worksheet for further analysis. Descriptive statistics (frequencies, means, standard deviations, ranges) were used for the demographic variables and PPEET's quantitative responses. All responses to the open-ended questions of the PPEET were transferred into the NVivo 12 (QRS International, Doncaster, VIC, Australia) software for qualitative analysis. An inductive thematic-based approach12 was used as follows: one reviewer (TO) examined all the responses and identified general emerging themes and subthemes. Themes and subthemes were determined based on inductive reasoning, where utterances revealed key descriptors of the phenomenon. The reviewer (TO) then coded each response under the most suitable theme/subtheme(s). Additional subthemes were created or collapsed (in case of overlap in emerging idea) where necessary. The final coding was then verified for accuracy by an independent reviewer (who is not involved in the CHILD-BRIGHT Network nor the BRIGHT Coaching study, current study on patient engagement). Disagreements in categorization of utterances were discussed between the two reviewers; if a decision could not be reached, it was resolved by a third reviewer (AM).
To ensure strong quality in reporting about patient and public involvement, we followed the Guidance for Reporting Involvement of Patient and the Public short form (Appendix S2, online supporting information).13 In accordance with these guidelines, the present manuscript provides information on engagement objectives and methods, positive and negative results, impacts and influences of patient engagement, and the team's critical perspective on the experience.
Results
Description of the study population
The responses of 11 researchers (61% response rate) and six PAG members (67% response rate) were collected. Researchers (nine females and two males) had a median of 18 years (interquartile range=13–29y 4mo) of experience in research. The involvement frequency in the BRIGHT Coaching project was consistent/regular for 50% of members (i.e. attending all meetings), moderate for 30% (i.e. attending most meetings), and occasional for 20% (i.e. attending some meetings). PAG respondents (five females and one male) were mostly biological parents to their disabled child (84%), married (100%), with an education level ranging from a certificate to a bachelor's degree, working part-time (67%), and being involved in the BRIGHT Coaching project for 1 to 2 years (50%) or more than 2 years (50%). Their family composition consisted of one to four children; one to three children with disability aged 1 to 16 years. Parents reported that their child(ren) had received the following diagnoses (in descending order of frequency): autism spectrum disorder (67%); cerebral palsy (33%); attention-deficit/hyperactivity disorder (17%); development delay and seizures (17%); anxiety (17%); Prader–Willi syndrome (17%); fetal alcohol spectrum disorder (17%); and VACTERL association (17%).
Main quantitative outcomes
Figure S2 (online supporting information) outlines the frequency responses on the PPEET for both study groups. In the section of communication and supports for participation, PAG members mostly ‘agreed’ (50–75% to 75–100% response frequency) with: (1) having a clear understanding of the PAG's purpose in the project; (2) having the supports needed to participate; (3) having enough information to contribute to the topics being discussed; (4) being satisfied with the monetary compensation for their involvement; (5) the research team preparedness level for meetings and collaborative teamwork; and (6) realistic deadlines that are set to provide feedback and review material.
In the sharing views and perspectives section, PAG members ‘strongly agreed’ (50–74% response rate) that: (1) they can express their views freely; and (2) that their views are being heard. They ‘agreed’ (50–74% response rate) that: (1) a wide range of views on the topics discussed are being shared in meetings; and (2) they are representing a broad range of perspectives on the topics being discussed.
In the impact and influences section, most PAG members (50–74% response rate) indicated strong agreement that the engagement initiative fulfills its objectives and that the input provided through this group will make a difference to the work of the project. They were also confident (50–74% response rate) that the input provided through the PAG is and will be used by the project.
Lastly (final thoughts and satisfaction section), most PAG members (50–74% response rate) conveyed that they are now better informed about patient-oriented research methodology, overall satisfied with the group and the initiative, and that this patient engagement activity is a good use of their time.
The responses of the research team members generally aligned with those of PAG participants. However, in certain sections that were related specifically to PAG members (e.g. whether PAG members have the supports needed to participate and have enough information to contribute to discussions), some of the research team participants (<25% response frequency) indicated impartial responses (i.e. ‘neither disagree nor agree’).
Main qualitative outcomes
The interrater agreement in the qualitative data coding of the responses to the open-ended questions of the PPEET between the first and the second/independent reviewer was high at 92.9%. Discordance across four utterances was resolved through a discussion and 100% agreement was reached for the categorization of all utterances.
Table S1 (online supporting information) summarizes the emerged themes/subthemes, outlining the most salient underlying utterances from both study groups. Three main themes were identified: facilitators, barriers, and impacts. Fifty-seven utterances were analysed, where 54.5% underlined facilitators, 22.8% and 22.8% related to barriers and impacts respectively. Researchers provided more responses than members of the PAG at 61.4% versus 38.5%.
Facilitators to patient engagement included the following subthemes (all listed in order of higher to lower number of underlying utterances): positive qualities of PAG members (different perspectives and diversity; motivation, engagement, and commitment); communication strengths (feeling of being heard, researchers’ openness to listen, ability to use alternative methods of communication); respect, trust, and partnership; supports (i.e. in-person meetings, financial compensation, workload assessment, and follow-up); and, PAG's instrumental roles in all parts of the project. Barriers to patient engagement included: homogeneity of the PAG (i.e. based on sociodemographic variables); issues with communication (logistics of meetings, shyness to talk, logistics of completing surveys); amount and management of engagement requests; and time limitation. The impacts of our patient engagement initiatives were: development of a suitable intervention that is reflective of real needs; gaining experience with Strategy for Patient-Oriented Research methods for research; strengthening partnership with the community; facilitating knowledge translation; and increasing the likelihood for the uptake of the intervention.
Certain facilitators were predominantly identified by the research team (positive qualities of PAG members [different perspectives and diversity, motivation, engagement, and commitment]; supports; and the PAG's instrumental roles in all parts of the project), while others emerged from the PAG response (communication strengths [researchers’ openness to listen, ability to use alternative methods of communication]; respect, trust, and partnership; supports). Barriers were mainly reported by the PAG at 66.7% to 100% of ‘barriers-utterances’, whereas impacts were most commonly reported by the research team at 85.7% to 100% of the ‘impact-utterances’.
Discussion
The objective of the present study was to evaluate the patient engagement processes and their impacts within the BRIGHT Coaching research project from the perspectives of both parent-advisors and research team members. It was hypothesized that patient engagement would be challenging given that the interactions within BRIGHT Coaching research project were and are mainly virtual as opposed to face to face, involving researchers and parent-advisors from across the country. Another unique feature of this project worth highlighting is that patient engagement was evaluated during the trial, rather than at the end, giving us the opportunity to further improve patient engagement processes and ensuing the impacts of end-of-trial result dissemination and knowledge translational activities.
Overall, we determined that most parent-advisors were satisfied with this engagement initiative in terms of communication and supports for participation, the ability to share views and perspectives, and overall impacts of this engagement initiative. The responses of the research team members were aligned with those of the PAG in nearly all elements of the engagement evaluation. The exceptions were in sections related specifically to PAG members (whether they had the supports needed to participate and have enough information to contribute to discussions), where some researchers provided impartial responses. Several enablers and strengths of the engagement processes were reported by both study groups. Those included facilitators (e.g. open and well-established communication) and positive impacts (e.g. how the PAG's perspectives and views have shaped the BRIGHT Coaching intervention in terms of its composition and delivery methods).
In addition, challenges emerged necessitating future adjustments from the team to strengthen ongoing and forthcoming interactions and procedures (e.g. dissemination of results to the target audience) to enhance our methods of engagement. Other patient engagement projects in the fields of oncology and spinal cord injury have reported similar findings, where patient-partners conveyed feeling overwhelmed with tasks.14-17
We take this opportunity to propose solutions in response to the reported challenges. To address the homogeneity of the PAG/lack of diversity, we suggest recruiting additional members with diverse characteristics. This might be established by broadening our current recruitment strategies to reach and attract fathers of disabled children. In response to mismanagement of ongoing tasks that could potentially overwhelm our parent-advisors, we propose creating a central tracking system that is visible to all research team members containing information on all ongoing tasks disseminated to parent-advisors and their progress. In response to the logistics of meetings and surveys, we propose offering more options for potential meeting dates and times and providing the option of having a liaison staff gathering real-life verbal feedback/responses using an online interactive platform that can work with a smartphone, tablet, or laptop.
Furthermore, we speculate that the positive feedback obtained regarding engagement is a result of the team's ongoing and open communication. Early and ongoing efforts are aimed at establishing and maintaining good relationships and ways of working together. Specific strategies used by our team include: (1) allowing and planning for members of the PAG to meet separately from researchers to facilitate and optimize their discussions and brainstorming since meeting separately helps to minimize their fear of feeling intimidated during meetings given that discussions involving researchers often use academic jargon; (2) issues and requests for feedback from the PAG are regularly brought back to the research team and are accounted for once addressed; (3) offering members of the PAG a secured online platform for meetings where they can discuss issues and work together in a safe place; and (4) the research team should periodically interact with members of the PAG, provide updates on the project, invite, plan for, and allocate a budget for PAG members to be able to attend the annual CHILD-BRIGHT conferences, and regularly forward notes of appreciation for their involvement. Furthermore, the BRIGHT Coaching trial was designed with parent involvement to ensure that PAGs would continue to be involved at all stages of the research. Mechanisms are in place to ensure clear feedback on how PAG suggestions contributed to the final product and decisions. These may be contributing factors to high PAG satisfaction. We believe that by using these methods, we minimized commonly reported negative impacts by other teams: feeling they are not being listened to;18-20 insensitivity of researchers in using academic jargon;19 and feeling left out of/excluded from regular communications.15, 21
Our study has several limitations. First, we were limited by the small sample size in both study populations. Second, only one method of information gathering was used. We propose that focus groups and/or individual semi-structured interviews in addition to administering the PPEET might have been beneficial and may have resulted in additional insights or examples of specific actions that serve as facilitators or barriers to engagement. Moreover, some sections of the PPEET are potentially not suitable for researchers’ feedback gathering. This was shown by researchers reporting impartial responses (i.e. ‘neither agree nor disagree’) on the sections related to the perspectives and views of the parent-advisors and whether parent-advisors were adequately supported. Currently, our team is planning for a future evaluation of the engagement at the end of the project. We have a great opportunity to implement changes to our evaluation process in response to the limitations highlighted here. Lastly, all co-authors were participants in this study, which might have introduced a certain response bias. However, only the primary author engaged in modifying the PPEET for the purpose of this study and all responses were kept anonymous; no descriptors were queried on that could have identified survey respondents. We suggest that this method might have encouraged unbiased responses.
In conclusion, we demonstrated the usefulness and application of patient-oriented research methodologies. The processes of a patient engagement initiative were described, and their impact was evaluated. The process of engaging with parents was valuable in developing a relevant research project. Evaluating engagement midway through the project has provided opportunities and insights for improving how parents are involved. We believe that having involved parent-advisors early on and keeping them consistently engaged throughout the process will be beneficial to the ultimate outcomes of the BRIGHT Coaching intervention for parents and their children with suspected developmental delays.
Acknowledgements
The members of the BRIGHT Coaching research team are as follows: Marilyn Ballantyne, Eyal Cohen, Jean-Paul Collet, Tammie Dewan, Mayada Elsabbagh, Ana Hanlon-Dearman, Lucyna Lach, Theresa McElroy, Patrick McGrath, William McKellin, Anton Miller, Hema Patel, Gina Rempel, and Michael Shevell.
We thank the members of the BRIGHT Coaching PARENT-PANEL: Amy Spurway, Aren Prupas, Carrie Costello, Rachel Evans, Ryan Evans, Sasa Brown, and other parent-advisors for their continuous involvement in the BRIGHT Coaching research project, guidance, and feedback; and Hana MacDougall (Research Institute of McGill University Health Centre) for developing and revising the study ethics documents, coordinating the submission to Ethics Committee of the Research Institute of the McGill University Health Center, assisting with the deployment of the survey through the REDCap platform, and facilitating all communications between the research team and the PARENT-PANEL.
The Canadian Institutes of Health Research (no. SCA-145104) and CHILD-BRIGHT Funding Partners provided funding for this study.
A Majnemer and M O’Donnell are co-principal investigators on the BRIGHT Coaching project that is funded by the Canadian Institutes of Health Research. Since 2018, T Ogourtsova has been employed by the CHILD-BRIGHT Network as a postdoctoral fellow. K Wittmeier holds the Dr. John M Bowman Chair in Pediatrics and Child Health, supported by the Winnipeg Rh Institute Foundation and University of Manitoba Department of Pediatrics and Child Health.
Open Research
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available from the corresponding author upon reasonable request.
