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Background and aims: Participatory research involves academic partners working together with the community that is affected by research to make decisions about that research. Such approaches often result in research that is more respectful of, and responsive to, community preferences – and is vital in the context of autism research with culturally and linguistically diverse (CALD) communities. Whilst participatory approaches are becoming more commonplace within CALD autism research, no studies have explored the experiences of being involved in autism research from the perspectives of CALD community partners over the course of a study. This paper intended to address this gap by reporting on the experiences of CALD parents of autistic children who were community partners in a 1-year Australian research project exploring home–school partnerships for CALD parents of autistic children. We aimed to: (1) report on how parents' involvement in the research process shaped the home–school partnerships study over time and (2) understand their experiences of being community partners on the home–school partnerships project. Methods: Using key principles of participatory approaches, we established Chinese and Vietnamese parent advisory groups to contribute to a project exploring home–school partnerships for parents of autistic children from CALD backgrounds in Australia. Advisory groups included parents of autistic children from Chinese/Vietnamese backgrounds, as well as interpreters, professionals and researchers. We documented how parents' participation as community partners shaped the home–school partnerships study over the course of the project. We also elicited parents' own views and experiences of being community partners through informal, open-ended questions at the beginning and end of the study. Results: We found that parents' input fundamentally shaped the broader home–school partnership study, from meaningful, accurate translation of interview schedules through to making decisions regarding community-specific recommendations and dissemination plans. Parents themselves reported being keen to collaborate and to hear and share opinions for the purpose of the home–school partnership study – although they noted how emotionally difficult sharing their stories could be. While they initially had some concerns about combining being involved as a community partner with their existing responsibilities, ultimately, parents were surprised by the scope of the home–school partnership study and their level of involvement as community partners. Through hearing others' stories and sharing their own in advisory group meetings, parents reported ancillary benefits of their involvement, including increased self-advocacy and well-being. Conclusions: These findings show how research that is conducted in partnership with diverse members of the autism community has the capacity to improve the quality of the research and benefit community partners. Implications: This study clearly documents the benefits and potential challenges of participatory approaches with CALD communities. These findings emphasise to researchers and funders the importance of including extra time and money within budgets in order to produce meaningful research that is respectful and responsive to communities. [ABSTRACT FROM AUTHOR]

Globally, we have seen a drop in adult and child quality of life (QOL) during the COVID-19 pandemic. However, little is known about adult or child QOL during the height of the pandemic in Australia and the impact of government-imposed restrictions, specifically attending school on-site versus home schooling. Our study aimed to establish if QOL in children and parents presenting to a Respiratory Infection Clinic in Victoria, Australia, for COVID-19 PCR testing differed from pre-pandemic population norms. We also explored whether on-site versus home schooling further impacted QOL. Following the child's test and prior to receiving results, consenting parents of children aged 6 to 17 years old completed the Child Health Utility 9 Dimension (CHU9D) instrument on their child's behalf. Parents of children aged birth to five years completed the EuroQOL 5-Dimension 5-Level (EQ-5D-5L) instrument on their own behalf (cross-sectional study). Data analyses utilised quantile regression, adjusting for the child's age, COVID-19 symptoms, gender and chronic health conditions. From July 2020 to November 2021, 2025 parents completed the CHU9D; the mean age for children was 8.41 years (±3.63 SD), and 48.4 per cent were female (n = 980/2025). In the same time period, 5751 parents completed the EQ-5D-5L; the mean age for children was 2.78 years (±1.74 SD), and 52.2 per cent were female (n = 3002/5751). Results showed that QOL scores were lower than pre-pandemic norms for 68 per cent of the CHU9D group and 60 per cent of the EQ-5D-5L group. Comparing periods of on-site to home schooling, there was no difference between the median QOL scores for both CHU9D (0.017, 95% CI −0.05 to 0.01) and EQ-5D-5L (0.000, 95% CI −0.002 to 0.002). Our large-scale study found that while QOL was reduced for children and parents at the point of COVID-19 testing during the pandemic, differing levels of government-imposed restrictions did not further impact QOL. These unique insights will inform decision-making in relation to COVID-19 and future pandemics. [ABSTRACT FROM AUTHOR]

Background: The aim of this project was to identify the top 10 priorities for childhood chronic conditions and disability (CCD) research from the perspectives of children and young people with lived experience, their parents and caregivers and the professionals who work with them. Methods: We conducted a three‐stage study based on the James Lind Alliance priority‐setting partnership methods. It comprised two online surveys (n = 200; n = 201) and a consensus workshop (n = 21) with these three stakeholder groups in Australia. Results: In the first stage, 456 responses were submitted, which were coded and collapsed into 40 overarching themes. In the second stage, 20 themes were shortlisted, which were further refined in stage 3, before the top 10 priorities being selected. Of these, the top three priorities were improving awareness and inclusion in all aspects of their life (school, work and social relationships), improving access to treatments and support and improving the process of diagnosis. Conclusions: The top 10 priorities identified reflect the need to focus on the individual, health systems and social aspects of the CCD experience when conducting research in this area. Patient or Public Contribution: This study was guided by three Advisory Groups, comprising (1) young people living with CCD; (2) parents and caregivers of a child or young person with CCD and (3) professionals working with children and young people with CCD. These groups met several times across the course of the project and provided input into study aims, materials, methods and data interpretation and reporting. Additionally, the lead author and seven members of the author group have lived and experienced CCD. [ABSTRACT FROM AUTHOR]

Purpose: Qualitative research aimed at understanding the stress of parents of children with ADHD is limited and few interventions have been designed to directly target their stress. The study aim was to explore the stress of parents of children with ADHD using qualitative methodology. Methods: Thirteen parents of children with ADHD participated in two focus groups. Open-ended questions explored parents' experiences of stress. Focus groups were recorded, transcribed, and coded using thematic analysis. Parents also completed the Parenting Stress Index–Short Form. Results: Four primary themes were identified: The child's behaviour feels like a "wrecking ball"; Coping with the "war at home"; A divided family: "relationships don't survive"; and Craving support: "it's goddamn hard work". Five of eleven participants who completed the PSI-SF scored in the clinically significant range indicating levels of stress that require professional support. Conclusions: Parents attribute their high stress to their children's behaviour, unmet needs for support, and social stigma. Parents request support to enable them to cope and appear to represent a clinical population who require mental health care and support themselves. Future interventions directly targeting the stress of parents of children with ADHD may provide wide-ranging benefits for their children and families. [ABSTRACT FROM AUTHOR]

Background One of the strategies proven most successful in curbing rising rates of childhood obesity involves targeting parents as agents of change. Prior studies have focused on what messages to communicate, but few have investigated how they should be communicated. Objective To identify the channels most effective for communicating with parents of overweight and obese children and understand whether their use of parenting information sources differs from others in the community. Design/setting This study utilizes data from the Longitudinal Study of Australian Children ( LSAC). Families were included if weight and height information was available for parents and children at three data collection points: Waves 1, 2 and 4 (collected 2004, 2006 and 2010, respectively, n = 5107). Analysis A priori and a posteriori segmentation methods identified groups of parents that were similar in the sources used to obtain information about parenting, and examined whether some segments were more likely to have obese children. Results Four segments were identified that differed in their information source use: the 'personal networks', 'books', 'official sources' and 'mixed approach' segments. The 'official sources' and 'mixed approach' segments were most likely to have obese children, and they used doctors, government/community organizations and friends to obtain information on parenting. These segments were also less educated and had lower employment. Conclusions Messages are most likely to reach families with obese children if communicated through doctors, government publications and community organizations. Further, messages targeting social groupings of parents will leverage the power of advice from friends, which is another valuable information source for this group. [ABSTRACT FROM AUTHOR]

Background: Antibiotics are not recommended for treating uncomplicated respiratory tract infections (RTIs), despite this, antibiotic prescribing for this is widespread. General practitioners (GPs) report parental pressure and fear of losing patients if they do not prescribe antibiotics, however, parental views on antibiotics for RTIs are unclear. Therefore, this study examined GPs' and parents' perceptions regarding antibiotic prescribing for RTIs in young children. Methods: We conducted semi-structured interviews with 20 GPs, and a survey and focus groups with 50 parents and carers of children under the age of five between June 2014 and July 2015 in Melbourne, Australia. Qualitative data were thematically analysed using NVivo and quantitative data were analysed using SPSS. Results: GPs believed that parents expect antibiotics for RTIs and were more likely to prescribe them if parents were insistent. They believed parents would go elsewhere if they did not prescribe antibiotics. GPs suggested that there would be less conflict if parents were better educated on appropriate antibiotics use. In contrast, parents demonstrated good knowledge of RTIs and appropriate antibiotic use. Their main expectation from GPs was to obtain a diagnosis, discuss management, and receive reassurance that the illness was not serious. Parental satisfaction with GPs was not dependent on receiving antibiotics (r = 0.658, p < 0.001), and they would not seek another GP if antibiotics were not prescribed (r = 0.655, p < 0.001). Conclusion: GPs and parents have dissonant views on antibiotic prescribing for RTI in young children. GPs perceived parents wanting a diagnosis and reassurance that their child is not severely ill as pressure to prescribe antibiotic. To overcome these barriers, targeted training for both GPs and parents to improve communication and reassurance that satisfaction is not related to receiving antibiotics may reduce unnecessary antibiotic prescribing for RTI in young children. [ABSTRACT FROM AUTHOR]