Résumé

Les enfants en situation de vulnérabilité socioéconomique (SVSE) ont un risque plus élevé de présenter un retard de développement (RD) et ils ont moins accès aux interventions prévenant l’apparition et la progression de cette problématique. Cet article présente le processus participatif de co-développement d’un outil adapté aux familles en SVSE pour soutenir les parents dans le développement de leur jeune enfant. Les objectifs étaient de déterminer les besoins d'information à aborder dans l'outil et un format approprié pour rejoindre ces familles. Une méthode structurée de prise de décision en groupe nommée TRIAGE a permis déterminer le contenu et le format de l’outil. Des informations sur les signes d'alarme, la porte d’entrée des services, les ressources de soutien et les stratégies de stimulation de l’autonomie sont présentées sur une échelle de croissance. Les milieux communautaires et de première ligne pourront utiliser l’outil comme matériel d’intervention pour contribuer à prévenir les RD.

3.2 Abstract

Children from low socioeconomic families are at an increased risk of developmental delays. Scientific evidence demonstrates that early intervention is effective in mitigating part of the negative effects of low socioeconomic status on child development. However, several barriers limit access of low families to such interventions. The aim of this paper is to present the participatory co-development process conducted to produce an educational tool adapted to low socioeconomic families that can inform parents on early child development and strengthen their capacity to create a stimulating home learning environment. The objectives were to 1) identify which parents’ information needs should be addressed as a priority in the tool (tool content) and 2) which format would be most appropriate to reach our target population (tool format). Parents, pediatric healthcare professionals, community workers, managers and scientific advisers participated in a two-phase consensus-seeking process (Technique of Research of Information by Animation of a Group of Experts (TRIAGE)) to reach an agreement regarding the tool content and format. Participants unanimously decided to present information about red flags, referral source, support resources and autonomy stimulation strategies in an original, appealing, and accessible format, i.e. a life size growth chart ruler. The tool developed can be used in primary healthcare and community settings as an intervention to contribute to the prevention of developmental delays. This study reinforced the effectiveness of the TRIAGE method in enabling a group of different stakeholders to reach a consensus.

3.3 Introduction

Developmental delays are an important health issue in Canada and around the world because of their high prevalence and negative consequences for children, their families and society as a whole. Internationally, it has been estimated that between 5% to 15% of children under the age of five have a developmental delay (Demirci et Kartal, 2016; Rosenberg, Bart, Ratzon et Jarus, 2013). In Canada, 26% of children are vulnerable in at least one area of their development at kindergarten (Canadian Institute for Health Information, 2014). Developmental delays lead to decreased participation in self-care, play and learning activities at home, and at the daycare center. Caring for a young child with special needs can increase parents’ level of stress and anxiety and hence decrease their quality of life (Hsieh, Lin, Huang et Lee, 2014; Oelofsen et Richardson, 2006). In the long term, developmental delays are also associated with low academic performance (Nasuuna, Santoro, Kremer et Silva, 2016), limited employment opportunities and lower income (Hertzman et Boyce, 2010; Law, Rush, Schoon et Parsons, 2009). In addition, it has been demonstrated that reducing the prevalence of developmental delays in Canada could decrease crime rates, improve graduation rates and increase the gross domestic product, thereby contributing to economic progress and societal prosperity (Kershaw et al., 2010). Therefore, in order to prevent the appearance and progression of this health issue, it is important to intervene with children who are at higher risk for developmental delays. To this end, this paper presents a participatory method that was used to develop an accessible educational tool targeting low socioeconomic status parents in order to respond to their needs in terms of supporting their child’s early development.

Socioeconomic status is one of the most important factors associated with developmental delays as it strongly influences the conditions in which children grow and develop (Kayrouz, Milne et McDonald, 2017; Maggi, Irwin, Siddiqi et Hertzman, 2010). Low socioeconomic status can affect parents’ capacity to provide a stimulating home learning environment for their children (Maggi et al., 2010). Low income can limit parents’ ability to offer age- appropriate play and learning material to their children (Linver, Brooks-Gunn et Kohen, 2002). Studies have demonstrated that lower level of parental education is generally associated with fewer opportunities for cognitive and language stimulation for children (Evans, 2004; Hsin, 2009; Maggi et al., 2010). In addition, the many challenges and lack of social support that low socio-economic parents may face on a daily basis can affect their parental competency and thus their attachment bond with their child, which is critical for development (Brooks- Gunn, 2003; Linver et al., 2002).

Scientific evidence has demonstrated that developmental screening, early interventions, and parent-based interventions are highly effective services in fostering children’s development and enhancing parents’ capacity to provide a stimulating home learning environment (Brooks-Gunn, 2003; Peacock-Chambers, Ivy et Bair-Merritt, 2017; UNESCO, 2006; World Health Organization, 2007). Low socioeconomic families are the ones that benefit

the most from these services, as they can buffer part of the negative effects of socioeconomic status on children’s skills development (Brooks-Gunn, 2003; UNESCO, 2006; World Health Organization, 2007). Yet, low socioeconomic families have difficulty accessing developmental screenings and early interventions and engaging in parent-based interventions (Emerson, Morrell et Neece, 2016 Gibbard et Smith, 2016; UNESCO, 2006). Several individual and environmental barriers, such as low literacy skills, mistrust of healthcare professionals, previous negative experiences of care or stigmatization, inflexible service schedules and healthcare professionals’ lack of knowledge of the available community resources that can support families, limit parents’ capacity to obtain the services they need (Avenir d'enfants, 2019; Emerson et al., 2016). Therefore, the need to develop more accessible services targeting these families’ particular needs is increasingly being recognized and it has been identified as a priority by a large number of governments internationally (Gibbard et Smith, 2016; Jackson, Cheater et Reid, 2008; Johnson, 2001; UNESCO, 2006).

Best practices in the development of health interventions recommend to directly involve the potential users of the intervention in its development (Seligman et al., 2007). This can increase the likelihood of designing relevant, easily accessible, culturally appropriate, credible and hence more effective interventions in responding to the needs of the target population (Lang, 1999; Seligman et al., 2007; Shen et al., 2017). Best practices also advise to collaborate with the various service providers to facilitate the intervention’s implementation and ensure that it is complementary with their clinical practices (Seligman et al., 2007). In addition, guidelines on patient-centered care for underserved populations such as low socioeconomic families, highlight the importance of enabling patients to express their priorities in terms of care and to partner with them in the decision-making processes when developing new programs or interventions with a view to responding to their unmet needs (Silow-Carroll, Alteras et Stepnick, 2006). These guidelines also emphasize the importance of intersectoral collaboration in the identification of solutions to meet vulnerable populations’ needs, recognizing the critical role that proximity organizations play in promoting their health (Silow-Carroll et al., 2006).The aim of this paper is to present the participatory process conducted to co-develop an educational tool to inform parents about early child development and strengthen their capacity to create an environment that supports their child’s healthy development. This tool is intended as a means to reach socioeconomically disadvantaged families and to be used in primary healthcare services and community organizations. In order to produce a first version of the tool, a systematic consensus seeking method was used to 1) identify which parents’ unmet information needs were most critical to address and 2) what tool format would be most appropriate for low socioeconomic families to use.

3.4 Methods

3.4.1 Study design

This study was conducted between May 2019 and April 2020 in the Quebec City region, Quebec (Canada). A participatory approach was used; hence, individuals who are most concerned by the problem studied were invited to contribute to the identification of a solution focused on their needs (Anadon, 2007). An advisory committee was established, comprising parents, pediatric healthcare professionals, community workers, managers of primary pediatric health care services and scientific advisers on early child development. The combination of experimental and scientific knowledge led to the development of a tool tailored to parents’ needs and with the potential for being used in primary health care settings and community organizations. A standardized group consensus-building method called Technique of Research of Information by Animation of a Group of Experts (TRIAGE) was used. It enabled committee members to take an active role in the decision- making process regarding the tool’s content and format. In order to produce a first version of the tool, an iterative process of creation, validation and modifications was conducted via continuous discussion with the advisory committee and external experts. This allowed the researchers to ensure that the product was representative of the decisions made by the advisory committee. Ethics approval was given by the Comité d’éthique de la

recherche avec des êtres humains de l’Université Laval (#2019-006).

3.4.2 Recruitment of the advisory committee members

Following the TRIAGE method guidelines, we wanted to recruit between 10 and 12 individuals recognized for their experience and knowledge of the study topic (Gervais et Pepin, 2002). Recruitment, using purposive and snowball sampling methods, took place between May 2019 and August 2019. To recruit parents, community workers of organizations located in socially and materially disadvantaged areas of the city disseminated invitation forms to their clients and on social media. Parents were included if they 1) had a child under five years of age, 2) lived in the Quebec City region, 3) were able to participate in group discussions in French. The other members of the advisory committee were invited by email. They were included in the study if they presented one of the following characteristics: 1) being recognized experts of child development, 2) having extensive knowledge on existing educational developmental tools, 3) having experience working with low socioeconomic families. Interested individuals contacted the research team by email or phone to obtain more information about the study and their potential contribution. The individuals who accepted to participate in the study signed a consent form specifying the positive and negative effects that their contribution may induce. They were free to end their participation in the study at any time.

3.4.3 Data collection

The TRIAGE method was used to structure the prioritization process in order to enable committee members to reach an agreement regarding the most relevant content and format for the tool. This method has been used in earlier studies to choose which outcome variables should be measured as a priority in rehabilitation evaluation tools (Demers, Ska, Desrosiers, Alix et Wolfson, 2004; Gervais et Pepin, 2002; Lamontagne, Routhier et Auger, 2013), to determine prioritization criteria for decision making tools or patient waiting lists (Abbasgholizadeh Rahimi, Jamshidi, Ruiz et Ait-Kadi, 2016; Coutu et al., 2015; Lam Wai Shun, Bottari, Ogourtsova et Swaine, 2017), and to identify intervention priorities for rehabilitation programs (Poulin et al., 2020). In addition, the TRIAGE method has been used with a heterogeneous research team to determine priority needs to be addressed in the co-development of an eHealth tool for caregivers of elderly people (Boger et al., 2019). To the extent that these studies demonstrate that TRIAGE can be adapted to different research contexts and that it can effectively reconcile participants’ opinions with a view to making a joint decision, they support the use of this method for the purpose of our study objectives. A two-phase TRIAGE process was conducted: the first phase focused on identifying priority information needs to address in the tool (content) and the second on the visual and practical features of the tool (format). The TRIAGE process is normally conducted in two steps: data production and prioritization. First, in the data production step, the members explore a variety of solutions individually. Second, as part of the prioritization step, a structured group discussion with visual aid is carried out on the basis of specific criteria in order to sort the data obtained in the individual phase according to their relevance (see Figure 3).

3.4.4 Preliminary research and data production step (individual work)

The student researcher searched the scientific literature, the grey literature, and the Web. She also made phone contact with pediatric researchers, service managers, healthcare professionals and community workers to extend her knowledge regarding the different types of support tools for parents and the guidelines to increase accessibility of educational material. More specifically, she identified the information that is less extensively covered in the existing tools (e.g. information to help parents prepare for an appointment with a healthcare professional) and ways to reach low socioeconomic families. This optimized the chances of producing a tool that is complementary to the existing educational developmental tools and that addresses parents’ unmet needs. Members of the advisory committee were then sent a ten-minute preparation video before each group session to ensure their full participation in the TRIAGE process. These videos enabled the student to summarize the purpose of the project, to explain the different steps of the TRIAGE process and to share preliminary knowledge with the advisory committee members. At the end of each video, members were asked to propose a list of the main unmet information needs and a list of ideas regarding tool formats that would be appropriate for our target population. Instead of sending their suggestions to the researcher for analysis, like the original TRIAGE method proposed, members were asked to share them verbally in the group sessions of the next step. The decision to make this change and to use videos was made in order to facilitate parent participation, having in mind that reading and writing difficulties are common among low socioeconomic status individuals (Porr, Drummond et Richter, 2006). This is consistent with the TRIAGE method, which recommends adaptation of the research material and process to enable optimum engagement of all participants and avoid exclusion (Lamontagne et Tétreault, 2014).

3.4.5 Prioritization step (group sessions)

Following TRIAGE method guidelines, two two-hour group sessions were conducted with the advisory committee members. The first session focused on parents’ unmet information needs and the second on the tool format. In order to facilitate parent participation, the sessions were held on a community organization’s premises located in one of the most disadvantaged areas of the city, free daycare was available, and monetary compensation was offered. The student researcher facilitated the sessions jointly with one of her supervisors. Since the quality of the data gathered during the TRIAGE process depends on the facilitator’s group discussion management skills (Lamontagne et Tetreault, 2014), the first session was pretested with colleagues at the research center. This pretest helped the student researcher to enhance her facilitation skills and to improve the meeting program, thereby ensuring that study objectives are effectively achieved.

First part of the group sessions: Sharing ideas

Firstly, the student researcher validated with members her findings regarding existing tools by asking them to identify any important missing elements. Secondly, a warm-up exercise was done to prepare the participants. In the context of a five-minute brainstorming session, the members shared some of their ideas on content (group session #1) and format (group session #2). Thirdly, participants were divided into teams to share their ideas regarding unmet information needs (group session #1) and accessible formats (group session #2). The teams were composed of members with different expertise (e.g. one parent, one manager and one community worker). They were then asked to write on post-it notes their top three suggestions for information needs or tool format. Fourthly, each team presented their ideas to the group. After these presentations, members could add other suggestions for items to be included in the tool. During the break, the facilitators grouped similar suggestions together.

Second part of the group sessions: TRIAGE sorting exercise

In the second part of each group session, groupings were validated with members, and the facilitator ensured that ideas were well understood by members before they proceeded to organize them in order of priority. Suggested items were then sorted by priority using visual aid according to criteria identified by Maxwell, Alves et Granlund (2012). These criteria are: availability, accessibility, affordability, accommodability and acceptability. The TRIAGE visual aid originally included six sections: memory, grouping, selection, fridge, garbage and veto. In this study, the grouping section wasn’t included in the visual aid because similar ideas had been combined previously. The veto section was also removed, yet some uncertain elements were validated with experts. First, all suggestions were placed in the Memory section. Then members discussed the criteria to determine which items should be prioritized in the tool. Unanimously selected suggestions were classified under Selection and the ones unanimously rejected were classified under Garbage. The suggestions that members could not agree on were temporarily classified under Fridge. A second round of discussion was held in order to choose suggestions from the Fridge section to include in the tool.

3.4.6 Data analysis

In the TRIAGE method, data collection and analysis occur simultaneously (Gervais et Pepin, 2002). In fact, the data classified in the Selection section of the visual aid can be used directly for the production of the first version of the tool without further analysis. However, to ensure extensive understanding of the members’ decisions, group sessions were recorded and listened to in order to associate each selected or rejected item to the criterion justifying the choice.

3.5 Results

3.5.1 Advisory committee

Eleven participants, including parents (n=3), community workers (n=2), healthcare professionals (n=4), a pediatric primary care manager (n=1) and a public health scientific advisor specialized in pediatrics (n=1), took part in the two TRIAGE phases. Community workers were from community-based family organizations located in two of the most disadvantaged areas of the city. The participating healthcare professionals, working in a social pediatric center and in local community service centers, included occupational therapists (n=2), a social worker (n=1) and a specialized educator (n=1).

3.5.2 Data production step

Suggestions for unmet information needs to be addressed in the tool

The participants proposed 18 unmet information needs related to five themes: appointment with healthcare professionals (n=8), autonomy developmental domain (n=2), everyday life activities (routine) (n=4), discipline (n=1) and parental sense of self-efficacy (n=3) (see Table 1). Facilitators created seven groupings of suggestions having a similar focus. As a result, during the first group session, 10 suggestions for unmet information needs to be prioritized were classified in the Memory section of the visual aid.

Table 1. Results of the data production process: relevant suggestions for unmet information needs to be

addressed in the tool

Theme Relevant information that can be included in the tool

Appointment with health professionals

(n=8)

- Resource that refers parents to the appropriate healthcare professional or service

- How to get access to healthcare professional services? - Roles and responsibilities of healthcare professionals - Which professional to consult for a particular concern

- List of supporting resources (e.g. website, community programs, toll-free helpline for parents, trusted people)

- Questions that healthcare professionals frequently ask and important information to share with healthcare professionals

- Reasons why a healthcare professional may ask a question or request a piece of information

- Importance of providing an honest answer to the questions asked by healthcare professionals

Domain of development:

autonomy (n=2)

- Red flags: indicators of the need to consult a healthcare professional (global development, observable in daily routine, autonomy milestones)

- Strategies to stimulate child autonomy development and scaling of the strategies according to the child’s age and skills

Everyday life activities (i.e. routine)

(n=4)

- Common problems experienced in daily routine and solutions to prevent and