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

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. 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?" 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. 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. 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 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.

Leitão S ，St Clair MC ，Botting N ，Gibson J ，Jackson E ... -  《-》

How to create accessible research summaries for the developmental language disorder community.

Gasparini L ，Ziegenfusz S ，Turner N ，Leitão S ，St Clair MC ，Jackson E ... -  《-》

Stakeholder perspectives on educational needs and supports for students with developmental language disorder.

Students with developmental language disorder (DLD) often experience academic underachievement, and require adjustments and accommodations to access the curriculum. Teachers, allied health professionals and parents/caregivers have varying roles in the education process, and it is essential they work together to provide optimal support. However, their perspectives on the areas of functioning most impacting learning, the difficulty of school-based tasks and the helpfulness of educational support have received limited attention. A between-group survey design was used with recruitment occurring from September 2020 to October 2021. A total of 293 participants was comprised of teachers (n = 78), allied health professionals (n = 138) and parents/caregivers (n = 77). All respondents rated the learning impact of seven areas of functioning (academic behaviour, fine/gross motor, language/communication, literacy, numeracy, sensory and social/emotional), the difficulty of 39 school-based tasks, and the helpfulness of 27 educational supports for primary and/or secondary school-aged students with DLD. The groups of school-based tasks were combined into seven subscales (academic behaviour-related tasks, fine/gross motor tasks, language/communication tasks, literacy tasks, numeracy tasks, sensory-related tasks and social/emotional tasks) for analysis. The educational supports were also combined into six subscales (additional time, differentiation/adjustments, individualized support, social/emotional support, technology and visual supports). All participants rated literacy and language/communication as the areas of functioning most impacting learning and requiring the highest level of support for students with DLD. Literacy tasks were rated the most difficult across stakeholder groups. However, comparison between stakeholder groups showed statistically significant differences between ratings for six (of seven) areas of functioning. Statistically significant differences were identified when rating the difficulty of four (of seven) school-based task subscales. Additional time and visual supports were rated the most helpful educational supports across groups. Overall, teachers and allied health professionals rated areas of functioning and school-based tasks as more difficult than parents/caregivers, although they shared similar perspectives on five (of six) educational support subscales. Literacy and language/communication are the areas of functioning rated to be most impacting learning for students with DLD. However, literacy tasks were reported to be the most difficult for students with DLD to complete. Teachers, allied health professionals and parents/caregivers are recommended to regularly discuss the areas of functioning, school-based tasks and educational support to facilitate inclusive educational practices. Future research needs to consider the perspectives of students with DLD. What is already known on the subject There is extensive evidence demonstrating the increased risk of academic failure for students with DLD, particularly with literacy and numeracy. Although research on academic achievement or individual groups has occurred, limited research has compared stakeholders supporting students with DLD, which is vital for collaboration and optimal inclusive educational practices. What this study adds to the existing knowledge Teachers, allied health professionals and parents/caregivers have unique roles in the education of students with DLD and show differing perspectives that may link to these roles. Literacy and language/communication were the areas of functioning rated as most impacting learning, whilst literacy tasks were the most difficult activity undertaken at school for primary and secondary school-aged students with DLD. Additional time and visual support were rated as the most helpful educational supports for students with DLD. What are the practical and clinical implications of this work? Stakeholders demonstrate variable views on the areas of functioning and school-based tasks requiring support for students with DLD; however, they agreed on the helpfulness of most educational supports. Participants rated social/emotional tasks easier and their related supports less helpful than other areas of functioning. Given the associations between academic underachievement and mental health difficulties, more consideration needs to be given to the social/emotional well-being of students with DLD in school. Taken together, establishing differences in perspective will help with the implementation of inclusive educational practices.

Ziegenfusz S ，Westerveld MF ，Fluckiger B ，Paynter J ... -  《-》

Using Experience Sampling Methodology to Capture Disclosure Opportunities for Autistic Adults.

Love AMA ，Edwards C ，Cai RY ，Gibbs V ... -  《-》

Improving the experience of health services for trans and gender-diverse young people and their families: an exploratory qualitative study.

Stepney M ，Martin S ，Mikulak M ，Ryan S ，Stewart J ，Ma R ，Barnett A ... -  《-》