‘It's really important to be collaborating’: Experiences of participatory research for Chinese and Vietnamese parents of autistic children
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PROVIDER: S-EPMC10644728 | biostudies-literature | 2023 Jan
REPOSITORIES: biostudies-literature
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Project description:Lay abstractPrevious research examining how parents talk about autism with their children has tended to focus on parents who are not autistic themselves. We collected information on this topic from 34 autistic parents of autistic children (most of whom had told their children about their diagnosis). We found similarities, but also differences, between the views and experiences of autistic parents in this research and those reported in previous research (in studies of largely non-autistic parents). Similarities include the following: it is important to be open and honest about the diagnosis; the diagnosis should be introduced/discussed as early as possible; discussions should be tailored to each individual child's needs; and we should not overlook the challenges associated with autism, but it is important to focus on positive aspects too. Differences include the following: autistic parents used personal experiences in conversations about autism, which was felt to result in increased understanding and empathy with their children; autistic parents overwhelmingly focused on more positive aspects of an autism diagnosis; our sample did not express concerns that discussions could have negative consequences too (e.g. making children more anxious); and autistic parents did not want or need professional support to talk about autism with their children (instead, they felt confident in using their own knowledge/experiences to guide discussions).
| S-EPMC8111227 | biostudies-literature
Project description:Lay abstractAutistic people are more likely to experience mental health difficulties compared to neurotypical people. It is very important that we understand what increases the risk for mental health difficulties, and what helps to protect against them. So far, research on this for children and young people has only investigated a small number of factors and these have been chosen by researchers and clinicians. This study took a different approach in which parents' expertise in their children was recognised. Parents were asked to tell the story of their autistic teenagers' mental health from diagnosis in early childhood through to the present, and to explain the 'theories' they developed about what affected their child's mental health - positively and negatively - and how. Parents believed a wide range of factors played a role. These include: (1) aspects of their child (e.g. their autistic traits, intelligence); (2) aspects of their surroundings (e.g. the efforts parents make to prevent and respond to their child's difficulties, features of the school they attend, availability of social activities); (3) changes their child experienced growing up (e.g. puberty, awareness of being autistic); and (4) life events involving loss and separation. Many of the factors parents identified as important have received little or no research attention to date. The findings suggest issues that should be considered in future research and reveal ways that support for parents and autistic children and teenagers can be improved.
| S-EPMC10576903 | biostudies-literature
Project description:BackgroundDespite increasing evidence to support an overlap between autism and anorexia nervosa (AN), underlying mechanisms remain poorly understood. Social and sensory factors have emerged as promising targets in both autism and AN, however there remains scope to compare these differences across autistic and non-autistic experiences of AN. Drawing on dyadic multi-perspectives, this study explored experiences of social and sensory differences in autistic and non-autistic adults and their parents and/or carers.MethodsUsing interpretative phenomenological analysis (IPA), dyadic interviews were conducted with 14 dyads, with seven autistic dyads and seven non-autistic dyads. Data analysis was subjected to a triangulation of interpretations: (1) the participants themselves; (2) a neurotypical researcher; (3) and an Autistic researcher with lived/living experience of AN.ResultsIPA identified three themes in each group, with similarities and differences between autistic and non-autistic dyads. Similar themes were identified regarding the importance of social connectedness and socio-emotional difficulties, as well a common lack of trust in the social and sensory self and body. Autism-specific themes centred on feelings of social 'defectiveness', disparities between sensing and expressing certain cues, and lifelong, multi-sensory processing differences. Non-autistic themes reflected social comparisons and inadequacy, and sensitivities to the learning of ideals and behaviour through early experiences.ConclusionsWhile similarities were observed across both groups, there appeared to be notable differences in the perceived role and influence of social and sensory differences. These findings may have important implications on the delivery and modification of eating disorder interventions. Specifically, they suggest that while treatment targets may look similar, subtle differences in underlying mechanisms and approaches may be required for Autistic individuals with AN across sensory, emotion and communication-based interventions.
| S-EPMC10243074 | biostudies-literature
Project description:Returning results to research participants is increasingly acknowledged in research ethics guidelines. But few research teams actually do it or provide mechanisms for offering it as an option. We explored the perspective of parents of an autistic child participating in genetic research. In all, 388 questionnaires were sent to 194 parents; 158 questionnaires were completed (89 mothers and 69 fathers), giving a response rate of 41%. 97% of respondents (n=153) fully expressed a strong desire to receive research results, either general or individual ones. The survey solicited parents' opinions as to what means could be put in place to return research results. The majority held the research team responsible for returning individual results (79.7%, n=126). They indicated that it should occur at the completion of the research project (69%, n=109), by mail (75.3%, n=119). Over three quarters felt the Ministry of Health should cover the associated costs (77.8%, n=123). If the communication of individual findings, whether positive or negative, were to be possible, these would allow some respondents 'to be prepared for the future' (37%, n=57), without necessarily having practical benefits (21%, n=32), but at least bringing them 'relief or understanding' (14%, n=21). Moreover, parents were clear about the difference between research and clinical settings. This study underlines the importance of broadening the discussion about the communication of research results, especially individual ones. We believe that the integration of different perspectives--those of researchers, clinicians, ethics committees and participants--will enrich the debate and offer enlightenment for future ethical guidelines.
| S-EPMC3198138 | biostudies-other
Project description:BackgroundLittle is known about autistic parenthood. The literature that exists suggests that autistic parents can find it difficult to manage the everyday demands of parenting and domestic life. While emerging research has also highlighted more positive parenting experiences, greater understanding of autistic parenthood is needed.ObjectiveThis study sought to understand autistic parents' parenting experiences during the initial phase of the COVID-19 pandemic.MethodsThirty-five Australian autistic parents (95% women) of autistic children (aged 4-25 years) took part in semi-structured interviews designed to elicit their experiences of life during lockdown. We used reflexive thematic analysis using an inductive (bottom-up) approach to identify patterned meanings within the data set.ResultsAutistic parents repeatedly spoke of how the lockdown brought some initial relief from the intensity of their usual lives caring for their children. Nevertheless, most autistic parents felt that the "cumulative stress" of trying to juggle everything during lockdown proved very challenging, which eventually took its toll on parents' mental health. Parents were aware that they needed support but found it difficult to reach out to their usual social supports (including autistic friends) for help, and formal supports were virtually nonexistent. Consequently, they felt "very much forgotten." Nevertheless, they described how their connections with their children grew stronger over lockdown as they focused on nurturing their children's "mental health ahead of everything else."ConclusionsOur analysis shows how challenging conventional life can be for autistic parents. Parenting requires grappling with a distinctive set of demands, which are usually partially manageable through the informal supports many autistic parents draw upon. The relative absence of informal supports during the pandemic, however, left them reliant on more formal supports, which were not forthcoming. Research is urgently needed to identify the most effective formal supports for autistic parents, ideally in partnership with autistic parents themselves.
| S-EPMC10024268 | biostudies-literature
Project description:BackgroundPlay is important for mental health and well-being. Descriptions of autistic play have typically focused on "deficits" and are based on comparisons to neurotypical "norms". According to the neurodiversity paradigm, it is important that autistic voices are highlighted and that difficulties, differences, and strengths are explored. With this in mind, we designed the present study to focus on the experiences and perspectives of autistic people concerning the topic of autistic play.MethodsWe conducted a consultation with autistic stakeholders, as well as with parents and teachers of autistic individuals to help us design the study and interview questions. We used semi-structured interviews with 22 autistic adults aged 18-57 years (clinically confirmed diagnosis, n = 21; self-diagnosed, n = 1) who live in the United Kingdom. We analyzed the data using interpretative phenomenological analysis to identify themes.ResultsWe found important commonalities and differences in the ways that socialization in play, imaginary play, and flow (a state involving intense focus on the play) are experienced. Autistic adults discussed the importance of both solitary play and social play, with solitary play having an important recuperative function. They also reported preferences for parallel play and playing with similar autistic people. They also discussed imaginary play experiences, including social role-play and grounded-in-reality play, and the dual nature of flow experiences during play.ConclusionsThe findings of this study contrast with deficit-focused understandings of autistic play and build on neurodiversity-informed studies. We highlight, for example, the importance of considering the different circumstances under which solitary play or social play are preferred, as well as the importance of taking an individual approach to play. We encourage wider understanding and acceptance of these play preferences and experiences to support autistic people's well-being.
| S-EPMC11317800 | biostudies-literature
Project description:BackgroundSystems science approaches like simulation modeling can offer an opportunity for community voice to shape policies. In the episteme of many communities there are elders, leaders, and researchers who are seen as bearers of historic knowledge and can contextualize and interpret contemporary research using knowledge systems of the community. There is a need for a systematic methodology to collaborate with community Knowledge Bearers and Knowledge Interpreters. In this paper we report the results of piloting a systematic methodology for collaborating with a community Knowledge-Bearer and Knowledge-Interpreter to develop a conceptual model revealing the local-level influences and architecture of systems shaping community realities. The use case for this pilot is 'persistent poverty' in the United States, specifically within the inner-city African American community in Baltimore City.MethodsThis pilot of a participatory modeling approach was conducted over a span of 7 sessions and included the following steps, each with an associated script: Step 1: Knowledge-Bearer and Knowledge-Interpreter recruitment Step 2: Relationship building Step 3: Session introduction, Vignette development & enrichment Step 4: Vignette analysis & constructing architecture of systems map Step 5: Augmenting architecture of systems map RESULTS: Each step of the participatory modeling approach resulted in artifacts that were valuable for both the communities and the research effort. Vignette construction resulted in narratives representing a spectrum of lived experiences, trajectories, and outcomes within a community. The collaborative analysis of vignettes yielded the Architecture of Systemic Factors map, that revealed how factors inter-relate to form a system in which lived experience of poverty occurs. A literature search provided an opportunity for the community to contextualize existing research about them using realities of lived experience.ConclusionThis methodology showed that a community Knowledge Bearer can function as communicators and interpreters of their community's knowledge base, can develop coherent narratives of lived experiences within which research and knowledge is contextualized, and can collaboratively construct conceptual mappings necessary for simulation modeling. This participatory modeling approach showed that even if there already exists a vast body of research about a community, collaborating with community gives context to that research and brings together disparate findings within narratives of lived experience.
| S-EPMC10010640 | biostudies-literature
Project description:This study investigated the implementation model and research methods of a peer education program for new parents focused on infant feeding and nutrition. Two hundred and sixty-nine parents with an infant aged birth to two years old were invited to become co-researchers in a Participatory Action Research (PAR) study over three years. Data included focus group and online participant meeting transcripts, social media data, correspondence between the implementation team and peer educators, and field notes. All data were consolidated regularly and discussed by project participants and the research team. After each PAR cycle, structured content analysis was conducted, informing the next iteration of the implementation model and research methods. Participating parents were highly engaged in child feeding peer-to-peer education, but felt more effective and comfortable being considered as a child-feeding information resource sharer or 'champion' rather than a formal peer educator. Similarly, quantitative data collection was only effective when it was integrated seamlessly into the implementation model. PAR methodology suited the diversity and dynamic real-life study setting, facilitating substantial improvements to the peer nutrition intervention model and data collection methods. Our study demonstrated that a genuine collaboration between health professionals and participants to implement research in practice can achieve both intervention outcomes and research aims.
| S-EPMC8750105 | biostudies-literature
Project description:BackgroundMany medical trainees, prior to achieving specialist status, are required to complete a mandatory research project, the usefulness of which has been debated. The aim of this study was to gain an in-depth understanding of trainees' experiences and satisfaction of conducting such research projects in Australia.MethodsA qualitative descriptive approach was used. Semi-structured interviews with trainees were undertaken between May 2021 and June 2022. Australian medical trainees who had completed a research project as part of specialty training within the past five years were invited to participate. The purposive sample was drawn from participants in a survey on the same topic who had indicated interest in participating in an interview. Interviews explored trainees' overall experience of and satisfaction with conducting research projects, as well as their perceptions of research training, support, barriers, enablers, and perceived benefits. Interviews were transcribed verbatim and thematically analysed.ResultsSixteen medical doctors from seven medical colleges were interviewed. Trainee experience and satisfaction was highly variable between participants and was shaped by four factors: 1) trainees entered their specialty training with their own perspectives on the value and purpose of the research project, informed by their previous experiences with research and perceived importance of research in their planned career path; 2) in conducting the project, enablers including protected time, supervisor support and institutional structures, were vital to shaping their experience; 3) trainees' access to these enablers was variable, mediated by a combination of luck, and the trainees' own drive and research skill; and 4) project outcomes, in terms of research merit, learning, career benefits and impacts on patient care.ConclusionsTrainee experiences of doing research were mixed, with positive experiences often attributed to chance rather than an intentionally structured learning experience. We believe alternatives to mandatory trainee research projects must be explored, including recognising other forms of research learning activities, and directing scarce resources to supporting the few trainees who plan to pursue clinician researcher careers.
| S-EPMC11409634 | biostudies-literature
Project description:IntroductionThroughout the coronavirus disease 2019 (COVID-19) pandemic, parents and children faced significant challenges as a result of prevention measures implemented to control the spread of the disease. Ensuring that families have access to essential health information is critical for improving health outcomes and adherence to public health recommendations. Understanding parents' experiences and information needs related to the pandemic and associated health measures (e.g., vaccination, mask wearing, social distancing, etc.) will inform the development and dissemination of resources tailored to parents' needs to support informed decision making.MethodsWe conducted a qualitative descriptive study. Between September and November 2021, parents across Canada were recruited online via social media and community organisation newsletters and listservs to participate in focus groups via Zoom. Focus groups were audio-recorded and transcribed verbatim. Data were coded and analysed using thematic analysis. Participants completed a demographic questionnaire before the focus groups (via SimpleSurveys).ResultsSixty-seven parents participated in 12 focus groups between October and November 2021. In relation to experiences, parents felt they were (1) constantly trying to balance everything, and (2) trying to do their best with the information they had at the time when making decisions. Regarding information needs, parents reflected on (1) how difficult it was navigating copious amounts of changing information and finding credible sources to rely on, (2) the need for resources that were easily accessible, credible and in plain language and (3) the need for resources that were tailored to their needs to support them and their children make informed decisions.ConclusionsTrying to mitigate the risk of COVID-19 infection and adhere to public health recommendations, while balancing various factors (work, online learning, and social interactions) and navigating changing information, was overwhelming for many parents. Reflecting on their needs, parents suggested tailored resources that provided concise, credible information in plain language to help them make informed decisions and navigate conflicting information. These findings reveal important knowledge gaps and highlight areas that need to be addressed to support parents during the pandemic period and beyond.Patient or public contributionMembers of our established Paediatric Parent Advisory Group (P-PAG) were involved as collaborators throughout the planning (grant proposal), development and execution of the study. P-PAG members gave input on the design of the questionnaire, interview guide, recruitment strategy and interpretation of findings.
| S-EPMC10884360 | biostudies-literature