"I don't want to be this uptight, pushy person, continuously fighting for my child": Parental Perspectives on Developmental Language Disorder

Introduction:

Speech and language therapists (SLTs) play a key role in diagnosing Developmental Language Disorder (DLD) and communicating this to families. Despite this, many parents report not receiving a clear diagnosis (Ash et al., 2020; Porter et al., 2020). While some SLTs avoid using diagnostic terminology due to concerns about stigma or complexity (Harvey, 2023), parents consistently express that having a diagnosis supports understanding and access to resources. Receiving a DLD diagnosis is emotionally significant, and how it is delivered can have a long-term impact on families.

Aim:
To explore the experiences of parents whose children have received a DLD diagnosis and identify their priorities for a positive diagnostic experience.

Methods:
This research was co-led by a steering group of four parents to children with DLD, two SLTs, and one health researcher with expertise in co-design. Semi-structured interviews were conducted with 15 parents of children diagnosed with DLD. Interviews were analysed using reflexive thematic analysis (Braun and Clarke, 2019). Thematic findings were edited into a short film and shared with the interviewees together in a facilitated workshop. In this workshop, participants reflected on shared themes and collaboratively ranked priorities for improving the diagnostic process.

Results:
Four key stages emerged from the thematic analysis:

The period before diagnosis, marked by uncertainty and advocacy.
The moment of diagnostic delivery.
The immediate emotional impact and desire for information.
The longer-term fight for educational support.
Parents valued receiving a clear diagnosis despite the difficulties involved. They described experiences of feeling overwhelmed, isolated, and having to persistently advocate for their children. Parents spoke about the the power of shared storytelling during the workshop, as it brought out the emotional weight of the diagnosis. Two core priorities were identified for a good diagnostic experience:

Receiving a clear explanation of DLD.
Experiencing empathy in how the diagnosis is delivered.
Conclusions:
This study contributes new evidence about how SLTs can better support families receiving a DLD diagnosis. Findings indicate that clarity and empathy are critical components of effective diagnostic delivery. Parent-led priorities will now inform the development of a co-produced resource to guide best practice for diagnosis.

Service-user involvement:
Parents were involved throughout as steering group members, interviewees, and workshop participants, and their involvement was prioritised in accordance with NIHR (2024) guiding principles for community engagement and involvement to ensure authentic co-production.

Learning outcomes for attendees
Recognise the emotional and practical impact on families of receiving a DLD diagnosis.
Consider the parent-identified priorities for improving diagnostic delivery: empathy and clarity.
Explore how co-production with parents can shape more responsive and supportive practice.
Keywords
co-design, diagnosis, DLD, family experiences

References
Ash, Andrea C., Tyler T. Christopulos, and Sean M. Redmond. "“Tell me about your child”: A grounded theory study of mothers' understanding of language disorder." American Journal of Speech-Language Pathology 29, no. 2 (2020): 819-840.

Braun, Virginia, and Victoria Clarke. "Reflecting on reflexive thematic analysis." Qualitative research in sport, exercise and health 11, no. 4 (2019): 589-597.

Harvey, Hannah. "Diagnostic Procedures of Paediatric Speech and Language Therapists in the Uk: Enabling and Obstructive Factors." International Journal of Language & Communication Disorders 58, no. 5 (2023): 1454-67.

"Community Engagement and Involvement." 2024, accessed August, 2024, https://www.nihr.ac.uk/research-funding/global-health/community-engagement-and-involvement.

Porter, Karmen L, Janna B Oetting, and Loretta Pecchioni. "Caregivers' Perceptions of Speech-Language Pathologist Talk About Child Language and Literacy Disorders." American Journal of Speech-Language Pathology 29, no. 4 (2020): 2049-67.