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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]

Background: Persistent enteral tube feeding beyond the point of medical and/or physical necessity provides important nutrition to a child but may have implications for their development, gastrointestinal tract and quality of life. Tube dependency can affect parent–child relationships and sibling and family dynamics and place additional medical demands upon parents. It is therefore important to transition children from tube to oral eating and drinking as soon as is medically safe to do so. Tube weaning requires a skilled team to support the transition to oral intake; however, access to experienced teams is inconsistent. Without transparent discussions with their treating teams, many parents are left to navigate tube weaning options independently. Methods: Fourteen parents were interviewed using semi‐structured interviews. We explored the experiences of parents across their child's progression towards oral feeding, from the decision‐making process to undertaking an intensive multi‐disciplinary tube weaning programme. Thematic analysis of the parents' stories shaped the development of seven themes. Results: Parents were unaware that tube weaning would be required and how that would be facilitated. They expressed a strong belief that their child could learn to eat—if afforded an opportunity. Furthermore, parents are prepared to disengage from current services if they feel they are not respected members of their child's therapeutic team. Three key learnings were identified relating to the need for tube exit plans, parents as key team members and parents as change agents. Conclusions: Parenting a tube‐fed child, initiating and engaging in tube weaning, is a stressful and emotional journey. However, by establishing care partnerships, parents are willing to put trust in a process if provided with options and afforded autonomy, empowerment, acknowledgement and relevant support. [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 Very little research has examined the role of parenting in managing behavioural side-effects of cancer treatment. The purpose of this paper was to explore parent perceptions of (a) parenting in the context of childhood cancer; (b) the parenting strategies used in the context of managing child behavioural side-effects of cancer treatment; and (c) the perceived impact that cancer-specific parenting strategies have on child behaviour. Methods Participants were 15 mothers of children aged 2-6 years in the maintenance phase of treatment for acute lymphoblastic leukaemia at the Royal Children's Hospital Children's Cancer Centre, Melbourne, Australia. Mothers participated in a one-on-one semi-structured telephone interview using an interview guide which included questions on parenting in the context of childhood cancer, specifically in relation to behavioural side-effects (problems with behaviour, sleep and eating) and any perceived impact cancer-specific parenting may have on the ill child. Results Many parents reported that following their child's cancer diagnosis, they had to implement a suite of 'new' strategies that 'pre-diagnosis' were used only in moderation, if at all. The most salient theme that emerged was parents' perception that their parenting became more lax since their child's diagnosis. Parents further reported specific parenting strategies for each of the main child behavioural side-effects of cancer treatment. Conclusion Data from the current qualitative exploratory study highlight the role of specific parenting strategies in managing or assisting child behavioural side-effects of cancer treatment. Further quantitative research is needed to more fully examine the association between parenting and child behavioural outcomes in order to develop modifiable approaches to improving child behavioural side-effects in a paediatric oncology context. [ABSTRACT FROM AUTHOR]