The content of the tool

There are currently three versions of ETAP (see The versions of ETAP), each of which corresponds to a pivotal phase in the service trajectory (formal diagnosis, early intervention services, and transition to school).

Each version of ETAP contains five sections, allowing for documentation of different aspects of the pivotal phases being assessed.

Sections 1 and 2 concern the step preceding the pivotal phase. For example, for questions about the diagnosis phase, sections 1 and 2 allow for documentation of what happened in the pre-diagnosis phase: everything that the family did and the services they received from their first diagnostic concerns up to the formal diagnosis. The questions also allow family members (e.g., parents and guardians) to document their perceptions of the quality of the services received during this phase according to five specific determinants (see Five determinants of the quality of services).

Sections 3 and 4 of the questionnaire document the pivotal phase targeted in the questionnaire (e.g., the diagnostic process, the early intervention service, and the transition to school). The respondent can then document what happened during this phase (everything the family did and received during that service). They will also be able to document their perception of the quality of the services received during this phase according to five specific determinants. Sections 3 and 4 include 19 items each, for all versions of the questionnaire.

Section 5 concerns the assessment of the quality of all of these phases (including the pre-service and service phases) as a whole, still according to the five determinants. This section has five items (one per quality determinant).

Two of these sections are descriptive (sections 1 and 3). These include multiple-choice and open-ended questions to gather information on how the trajectory took place: the actions taken by the family, the duration of each activity/service and the providers encountered. The number of items per section and per version of the questionnaire depends on the phase studied.

The other three sections (2, 4, and 5) are central to the assessment of the perceptions of the quality of the service trajectory by service users (families). They make it possible to obtain quantitative scores on quality according to the five determinants.

Each version of the questionnaire ends with an open-ended question allowing respondents to add comments on their experience during this phase of their service trajectory.

*For more information on the development of the questionnaire, please see the following article:

Rivard, M., Mello, C., Mercier, C., Lefebvre, C., Millau, M., Morin, M., Morin, D., Abouzeid, N. and Chatenoud, C. (2020). Development of a questionnaire to assess the quality of service trajectories in autism spectrum disorder from families’ perspective. Journal of Applied Research in Intellectual Disabilities, 33(6), 1500-1511. https://doi.org/10.1111/jar.12777

Five determinants of the quality of services

The ETAP model makes it possible to assess the quality of the service trajectory at critical times according to five quality determinants:

1. Continuity refers to the way services are provided over time and between different service providers. The service trajectory and the different steps included in a pivotal phase should be an integrated, coherent, and continuous series of steps. We seek to understand the extent to which families were offered an orderly process during a particular phase or between phases, and the extent to which these steps followed a coordinated, coherent, and seamless progression.

Continuity has five sub-dimensions:

  • Interpersonal/relational continuity
  • Informational continuity
  • Goal continuity
  • Longitudinal continuity
  • Intersectional continuity

2. Accessibility refers to the ability for families to obtain the services and professional support they need during a specific period of their trajectory (i.e., how well the system provides accessible and available services to families).

3. Flexibility measures the extent to which the services have considered the reality of the child and their family (e.g., schedule) and are adapted to changes in their life situation. We also seek to document families’ perceptions on the ways in which the services have taken into account the profile of the child, adapted the interventions to their development, and took into account the language, culture, and place of residence (proximity) of the child and their family.

4. Validity aims to assess whether the services provide information, supports, or interventions that are appropriate, adequate and applicable to the situation of the child and their family.

5. The family-provider relationship (listening-empathy) makes it possible to document the extent to which families felt listened to and understood by the people who offered them services and to what extent these individuals were empathetic towards their family’s situation.

*For more information on the selection method of the five determinants – resulting from a series of research projects in collaboration with nearly 1000 families of young children with ASD, ID or DD – please refer to the following articles:

Rivard, M., Mello, C., Mercier, C., Lefebvre, C., Millau, M., Morin, M., Morin, D., Abouzeid, N. et Chatenoud, C. (2020). Development of a questionnaire to assess the quality of service trajectories in autism spectrum disorder from families’ perspective. Journal of Applied Research in Intellectual Disabilities, 33(6), 1500-1511. https://doi.org/10.1111/jar.12777

Rivard, M., Lépine, A., Mercier, C., & Morin, M. (2015). Quality determinants of services for parents of young children with autism spectrum disorders. Journal of Child and Family

Studies, 24(5), 2388-2397. https://doi.org/10.1007/s10826-014-0041-2

The versions of ETAP

Three versions of ETAP were created to assess three pivotal phases in the early childhood services trajectory. In future years, we want to evolve the model in order to offer versions of ETAP for other pivotal phases of families’ service trajectories (e.g., transition to primary school, transition to secondary school).

The first version of ETAP (ETAP-1) assesses the diagnostic trajectory that covers the period between the first diagnostic concerns and announcement of the diagnosis. This version has been validated in French and English with 200 respondents with a child aged 5 and under who had been diagnosed with ASD, ID, or DD.

  • Two other versions have been created and are currently being validated:
    ETAP-2: Transitional services version (following diagnosis and while waiting for early intervention services) and specialized early intervention services;
  • ETAP-3: Transition to school version, for the transitional period between specialized early intervention services and kindergarten.

How to complete ETAP

ETAP can be completed by the parents (or a guardian or family member responsible for or highly involved in the care of the child), either independently or with the help of a provider or member of the research team. ETAP-1 takes approximately 30 to 45 minutes to complete. It is possible to complete ETAP electronically (editable PDF) or on hardcopy.