Thread by @rkomesidou

Welcome to #ImplementationThursdays!!! I'd like to dedicate this week's thread to parents/caregivers and their important role in any implementation effort. #ImpSci #DevLangDis #Dyslexia #ELAchat #SLPeeps

Lately, I've been reading a lot about parents/caregivers' perspectives of their children's communication disorders and their experiences around them.

For example, De Lopez, @Renagalway, et al. asked parents how they made sense of their children's speech and language disorders and how they described them across 10 countries
pubs.asha.org/doi/10.1044/20…

Parents described their children's impairments using specific terms but did not use diagnostic labels often, they described impacts on daily activities and self-esteem, and they perceived improvements over time but were concerned about persistence of some difficulties.

The authors write, "These results suggest that it is important that practitioners listen to, acknowledge, and value parental perspectives and aim to provide services tailored to the needs of parents."

Clear communication between SLPs and parents/caregivers is also important. Ash, Christopulos, & @s_redmondUofU show it in this study: pubs.asha.org/doi/10.1044/20…

Mothers reported confusion over diagnostic labels, distress about their children's problems, and did not always trust or understand their children's SLP. They did, however, report high satisfaction with the services that their children were receiving.

The authors write, "When parents fail to understand the information they receive, they lack a common ground from which to communicate their concerns or desires for their children."

"It is also difficult, if not essentially impossible, to effectively advocate for your child if you cannot explain their problem to family, friends, teachers, and employers."

As the authors discuss, a common label like #DevLangDis may resolve some of these issues, but it depends on how we implement it across settings and how we account for system-level barriers (policies, local constraints, etc.).

Porter, @jannaoetting , & Pecchioni further examined caregivers' perceptions of SLP communication in this study:
pubs.asha.org/doi/10.1044/20…

Caregivers reported lack of information about diagnosis and practical implications (e.g., academic performance, long-term outcomes), but adequate information about SLP services.

Overall, these and other similar studies raise the following issues. 1) It's important to improve communication and information sharing between SLPs and parents/caregivers, especially around diagnosis and functional outcomes.

2) These issues won't improve if we put the responsibility solely on SLPs. This concerns ALL OF US and we must work together to remove barriers to advocacy, policy, and service delivery.

3) We do excellent work to improve the uptake of EBP into routine school-based practice but somehow parents/caregivers are rarely part of the decision process, one that eventually aims to improve their children's lives.

Why? Do we think that they don't have time? Or that they aren't interested? Or that they wouldn't understand? Or that we're the experts and they just need to listen to us?

Such assumptions are harmful for science and for practice. Because parents are our best allies. Take for example the incredible work that Decoding Dyslexia is doing! Because of their efforts, we now have legislation that mandates early ID and support of children with #dyslexia.

Or parents of children with #DevLangDis and the incredible work they do to raise awareness about this common but hidden condition! @tiffanyphogan talks with one of them in this #SeeHearSpeakPodcast episode seehearspeakpodcast.com/episode-19

What does this imply for implementation work? That we must see parents/caregivers/families not as informants or describers, but as partners and decision makers.

Active family involvement, informed family choice, acknowledgement of family's strengths, respect, continuous communication and sharing of resources can lead to many positive child and family outcomes but can also transform #ImpSci toward inclusiveness and equity.

We have so many mountains to move to ensure that every child has an opportunity to succeed in school and life. Parents and caregivers can help us move those mountains.