Physical proximity engendered through face-to-face
meetings followed up with regular phone and e-mail interactions have been essential to TACERN team building.
These meetings led to a shared body of knowledge about
TSC, epilepsy, and ASD, as well as the roles of different
disciplines in execution of the project goals. In addition, the
initial launch meeting and annual recalibration meetings
have provided key opportunities for collaboration and camaraderie between psychologists, psychology trainees, and
PIs. Serendipitous weather events during annual psychologist recalibration meetings—including a tornado in Birmingham, Alabama, complete with midnight evacuation to
the basement of the hotel; a severe storm in Houston, Texas,
leading to anxious calls home; and a surprise late spring
storm in Boston, Massachusetts, leading to a canceled meeting and two psychology fellows stranded en route—all lent
an emotional valence to the professional connections that
were made over the years. Repeated interactions at national
conferences have led to a sense of community within the
study and the clinical and research arena of ASD.
One challenge to team functioning has been sustaining the
face-to-face interactions and consistent communication with
personnel changes and decreased funds for meetings as the
study nears completion. Although it can be tempting to
forgo the time and expense of meeting after the project is
running smoothly, limited opportunities to meet in person
toward the end of the project can mean less cross-pollination of research ideas during the stage of article
Recommendations Related to Team Formation
• For a project of this complexity, building on and leveraging existing collaborative relationships increases the probability of success in assembling an effective team.
• Face-to-face interactions are critical to building the relationships needed to effectively launch and maintain study
integrity and reliability. Although costly for a geographically diverse consortium, the in-person launch meeting
(incorporating all key disciplines) and annual meetings of
smaller teams for specific purposes is worth the investment.
• Mechanisms to incorporate new research personnel are
essential to provide continuity of the study and continued
collaboration across sites.
Recruitment, Retention, and Family-Centered
All longitudinal research projects, particularly those in-
volving rare disorders, require considerable efforts to ensure
adequate recruitment and retention to reach study goals. In
TACERN, many families travel great distances to partici-
pate in the study, and they make a significant time commit-
ment over 3 years. Nonetheless, to date over 90% of par-
ticipants have remained enrolled in the longitudinal study.
Although many factors contribute to successful recruitment
and retention, discussions with families suggest that obtaining detailed information about their child’s development
over time, together with consultation about navigating the
service system, contributed to families’ engagement and
commitment to the study.
Psychologists in TACERN contributed to a family-centered research approach by discussing the child’s developmental and behavioral profile as it pertains to TSC and
answering questions about early intervention and special
education services. Providing feedback to families in an
interdisciplinary fashion, including the input of neurologists, psychologists, and speech;language pathologists, has
enabled families to obtain an integrated understanding of
their child’s strengths and needs across domains. Psychologists researched resources in the communities where families lived, wrote letters, and talked with service providers to
advocate for needed services and supports. Psychologists
were also of benefit to the families whose children were at
high risk of developmental delays and ASD due to their
TSC diagnosis but were found by the study evaluations to
be developing within normal limits. In these cases, the
psychologists were able to help the family understand the
aspects of their child’s behavior and/or development that
were more within the realm of typical development but
might have been exacerbated by the parents’ concern about
possible delays (e.g., not implementing developmentally
appropriate behavior management due to concerns they
might blame a child for a delay-related issue).
Study psychologists’ infant;family mental health expertise uniquely positioned them to be able to support whole
families’ needs in an integrated fashion during study visits
by supporting family members who also have TSC, identifying concerning behaviors in siblings, and supporting the
young child through difficult medical procedures. Discussing information about their child’s development and behavior, the role of early intervention providers, and concerns
about future development all led to therapeutic exchanges in
which psychologists had opportunities to support parents.
Recommendations Related to Recruitment,
Retention, and Family-Centered Research
• Psychologists play important roles in studies that involve
talking with parents about potentially challenging information regarding their infants’ development and implications for long-term functioning. One way to increase families’ engagement and the value of the study for them is to
think about the research study visits as therapeutic encounters, which can help parents increase their knowledge of
their child’s unique needs, learn about available services
and supports, increase their confidence in advocating for
their child, and shift the narrative of the families’ perspec-
360 WILLIAMS ET AL.