“They don't realise how hard he has to try every day”: The rewards and challenges of parenting a child with developmental language disorder

Suze Leitao, Michelle St Clair, Nicola Botting, Jenny L Gibson, Emily Jackson

Research output: Contribution to journalArticlepeer-review

Abstract

Background: An emerging body of literature explores the impact of living with Developmental Language Disorder (DLD) for children, individuals and families. This work has identified a range of challenges and strengths. However, there is limited evidence from the DLD community about the impacts of living with DLD in relation to parenting.

Aims: We explored the perspectives of caregivers in response to an open-text survey question: “What is most rewarding and challenging about being a parent to a child with DLD?”

Methods & Procedures: Respondents were caregivers of children with DLD who had signed up to Engage with Developmental Language Disorder (E-DLD). Qualitative content analysis was used to explore the open-ended responses from 112 parents who completed the yearly survey (child average age = 9.6 years; SD = 3.5 years, 46.9% female). Most caregivers lived in the UK, but we also had responses from around the world.

Outcomes & Results: For ‘rewards’, 52 codes and seven higher order categories were identified. These comprised the many rewards experienced from caring for a child with DLD, including seeing and celebrating progress, celebrating their child’s personality, and being proud to be their child’s parent. Caregivers mentioned the positives gained from learning about DLD and working together with their child to help them achieve their potential. They reflected on the supportive nature of the ‘right’ environment, in particular the school context and social connectedness.

For ‘challenges’, 84 codes and 11 higher order categories were identified. Caregivers often noted the lack of awareness of DLD among the community and professionals in general, and within the school system and among teachers. Caregivers reported support and information about DLD was difficult to find and were impacted by a constant need for advocacy. They reflected on the increased time needed to support their child, and worried about their child’s social and community participation. Many commented on the impact of DLD on the family, and on the mental health and wellbeing of both them and their children.

Conclusions & Implications: Hearing the views of caregivers of children with DLD is key, because shared decision making is central to client-centred care. Furthermore, ‘client perspectives’ is a cornerstone of evidence-based practice. There is much to take from the responses, and for professionals to reflect on and use. Collaboration with children, young people and families is needed for effective advocacy, and to develop awareness of DLD.
Original languageEnglish
JournalInternational Journal of Language and Communication Disorders
Publication statusAcceptance date - 16 Jan 2025

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