Abstract
BACKGROUND: An emerging body of literature explores the impact of living with developmental language disorder (DLD) on 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. 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 United Kingdom, 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 amongst the community and professionals in general, within the school system and amongst teachers. Caregivers reported support and information about DLD were 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 the mental health and well-being 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' are 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. WHAT THIS PAPER ADDS: What is already known on the subject An emerging body of literature has explored the impact of living with developmental language disorder (DLD) on the child, the individual and the family. This work has identified a range of challenges and strengths. These are important considerations to support the evidence-based practice of those working with the DLD community from planning treatment goals to designing and providing services. What this paper adds to existing knowledge Caregivers highlighted a range of rewards in parenting a child with DLD. They also identified a wide range of challenges, including a lack of awareness and support from professionals, the constant need for advocacy and the impact on the family as well as the impact on the mental health of their child and themselves as parents. What are the potential or actual clinical implications of this work? Shared decision-making is central to client-centred and family-centred care, and client perspectives are a key aspect of evidence-based practice. There is much for clinicians and practitioners to take from this data set of parent perspectives. The findings from this study will guide researchers and clinicians to reflect on how to work in collaboration with individuals with DLD and their families, including in their design and delivery of services and advocacy to continually raise awareness of DLD.