Epistemic injustice in experiences of young people with parents with mental health challenges.

Amongst the impacts of growing up with a parent with mental health challenges is the experience of stigma-by-association, in which children and young people experience impacts of stigmatisation due to their parent's devalued identity. This article seeks to expand our understanding of this issue through an abductive analysis of qualitative data collected through a codesign process with young people. Results indicate that young people's experiences of stigmatisation can be effectively understood as experiences of epistemic injustice. Participants expressed that their experiences comprised 'more than' stigma, and their responses suggest the centrality to their experiences of being diminished and dismissed in respect of their capacity to provide accurate accounts of their experiences of marginalisation and distress. Importantly, this diminishment stems not only from their status as children, and as children of parents with mental health challenges but operates through a range of stigmatised identities and devalued statuses, including their own mental health status, sexual minoritisation, disability and social class. Forms of epistemic injustice thus play out across the social and institutional settings they engage with. The psychological and social impacts of this injustice are explored, and the implications for our understanding of stigma around family mental health discussed.

StigmaBeat: Collaborating With Rural Young People to Co-Design Films Aimed at Reducing Mental Health Stigma.

Little is known about the experience and impact of intersectional stigma experienced by rural young people (15-25 years) who have a parent with mental health challenges. The StigmaBeat project employed a co-design approach to create short films to identify and challenge mental health stigma from the perspective of young people who have experienced this phenomenon. The aim of this paper is to describe the co-design methodological approach used in StigmaBeat, as an example of a novel participatory project. We describe one way that co-design can be employed by researchers in collaboration with marginalised young people to produce films aimed at reducing mental health stigma in the community. Through describing the processes undertaken in this project, the opportunities, challenges, and tensions of combining community development methods with research methods will be explored. Co-design with young people is a dynamic and engaging method of collaborative research practice capable of harnessing lived experience expertise to intervene in social issues and redesign or redevelop health services and policies. The participatory approach involved trusting and implementing the suggestions of young people in designing and developing the films and involved creating the physical and social environment to enable this, including embedding creativity, a critical element to the project's methodological success. Intensive time and resource investment are needed to engage a population that is often marginalised in relation to stigma discourse.

Editorial Perspective: Prato Research Collaborative for change in parent and child mental health - principles and recommendations for working with children and parents living with parental mental illness.

Children whose parents have mental illnesses are among the most vulnerable in our communities. There is however, much that can be done to prevent or mitigate the impact of a parent's illness on children. Notwithstanding the availability of several evidence-based interventions, efforts to support these children have been limited by a lack of adequate support structures. Major service reorientation is required to better meet the needs of these children and their families. This editorial provides recommendations for practice, organisational, and systems change.

A qualitative inquiry into psychiatrists' perspectives on the relationship of psychological trauma to mental illness and treatment: implications for trauma-informed care.

BACKGROUND: Trauma is a factor impacting the lives of many people experiencing psychiatric disorders. Trauma affects people's responses to illness as well as their interactions with services. AIM: This study aimed to explore the understandings and experiences of psychiatrists of working with trauma and emerging models of Trauma-Informed Care. METHODS: An interpretive qualitative inquiry was undertaken using semi-structured in-depth interviews with psychiatrists. RESULTS: Four themes were identified: Making sense of trauma; A contentious relationship between trauma and mental illness; Treatment made more challenging by trauma; Trauma-Informed Care highlights tensions. Psychiatrists are familiar with the concept of trauma but there are differences in beliefs about its relationship to mental illness that are consequential for practice. Trauma-Informed Care is seen as an effort to humanise mental health services, but with perceived limited impact on psychiatrists' roles. CONCLUSION: Findings indicate need for further consultation and collaboration with psychiatrists around trauma-informed care implementation; as well as consideration of what is required to develop professional consensus on trauma and its relationship to illness.

Feasibility of a randomized controlled trial of symptom screening and feedback to healthcare providers compared with standard of care using the SPARK platform.

PURPOSE: Supportive care Prioritization, Assessment and Recommendations for Kids (SPARK) is a web-based application that enables symptom screening and access to clinical practice guidelines for symptom management. Objective was to determine the feasibility of a randomized trial of daily symptom screening for 5 days among children receiving cancer treatments. METHODS: We included English-speaking pediatric cancer and hematopoietic stem cell transplantation (HSCT) patients who were 8-18 years of age at enrollment and who were expected to be in the hospital or in clinic daily for five consecutive days. We randomized children to either undergo daily symptom screening with symptom reports provided to the healthcare team using the SPARK vs. standard of care. The primary endpoint was feasibility, defined as being able to enroll at least 30 participants within 1 year, and among those randomized to intervention, at least 75% completing symptom screening on at least 60% of on-study days. RESULTS: From July 2018 to November 2018, we enrolled and randomized 30 participants. The median age at enrollment was 12.5 (range 8-18) years. Among the intervention group, the median number of days Symptom Screening in Pediatrics Tool (SSPedi) was completed at least once was 5 (range 4 to 5), with one participant missing 1 day of symptom screening. Among all participants, baseline and day 5 SSPedi scores were obtained in 29/30 participants. CONCLUSION: A randomized trial of the SPARK with daily symptom screening for 5 days was feasible. It is now appropriate to proceed toward a definitive multi-center trial to test the efficacy of SPARK to improve symptom control.

Analysis of a support group for children of parents with mental illnesses: managing stressful situations.

We report an ethnographic analysis of a psycho-education and peer-support program for school-aged children of parents with mental illnesses. We conducted a critical discourse analysis of the program manual and observed group interactions to understand whether children shared program goals predetermined by adults, and how, or if, the intervention was responsive to their needs. Children were expected to learn mental illness information because "knowledge is power," and to express difficult feelings about being a child of a mentally ill parent that was risky. Participants used humor to manage group expectations, revealing how they made sense of their parents' problems, as well as their own. Suggestions are made for determining good mental health literacy based on children's preferences for explaining circumstances in ways they find relevant, and for supporting children's competencies to manage relationships that are important to them.

Roadblocks and detours on pathways to a clinical diagnosis of autism for girls and women: A qualitative secondary analysis.

BACKGROUND: Autism is not always considered for girls and women until later along their clinical diagnostic pathways. Misdiagnosis or late diagnosis can pose significant disadvantages with respect to accessing timely health and autism-related services and supports. Understanding what contributes to roadblocks and detours along clinical pathways to an autism diagnosis can shed light on missed opportunities for earlier recognition. OBJECTIVE: Our objective was to examine what contributed to roadblocks, detours, and missed opportunities for earlier recognition and clinical diagnosis of autism for girls and women. DESIGN: We conducted a qualitative secondary analysis using data from a Canadian primary study that examined the health and healthcare experiences of autistic girls and women through interviews and focus groups. METHODS: Transcript data of 22 girls and women clinically diagnosed with autism and 15 parents were analysed, drawing on reflexive thematic analysis procedures. Techniques included coding data both inductively based on descriptions of roadblocks and detours and deductively based on conceptualizations of sex and gender. Patterns of ideas were categorized into themes and the 'story' of each theme was refined through writing and discussing analytic memos, reflecting on sex and gender assumptions, and creating a visual map of clinical pathways. RESULTS: Contributing factors to roadblocks, detours, and missed opportunities for earlier recognition and diagnosis were categorized as follows: (1) age of pre-diagnosis 'red flags' and 'signals'; (2) 'non-autism' mental health diagnoses first; (3) narrow understandings of autism based on male stereotypes; and (4) unavailable and unaffordable diagnostic services. CONCLUSION: Professionals providing developmental, mental health, educational, and/or employment supports can be more attuned to nuanced autism presentations. Research in collaboration with autistic girls and women and their childhood caregivers can help to identify examples of nuanced autistic features and how context plays a role in how these are experienced and navigated.

Re/producing the Pediatric Concussion Discourse in clinical rehabilitation practice.

PURPOSE: In the field of pediatric concussion, little to no scholarship has examined how clinical practice is shaped by patterned ways of thinking, talking about, and coming to understand concussion and young people (or "discourses of concussion in young people"). In this paper, we examine the ways in which one such discourse, the Pediatric Concussion Discourse (PCD), shapes how young people with concussion, their parents, and clinicians can think about, act in relation to, and experience concussion. MATERIALS AND METHODS: This critical rehabilitation research is informed by the post-structuralist theory of Michel Foucault (1926-1984), and the key concepts of power/knowledge, discourse, and the subject. RESULTS: Circulating through clinical guidelines for the management of pediatric concussion, the PCD re/produces the expectation that young people with concussion and their parents will behave as "responsible" subjects who follow the recommendations of so-called experts without question. If recommendations are not implemented, the PCD has the potential to constitute these same groups as "nonadherent", re/producing problematic discourses of medical compliance. CONCLUSIONS: By examining the effects of the PCD, it becomes possible to imagine how clinical practice and research might evolve in new ways that respect the knowledges and experiences of young people with concussion and their parents.Implications for RehabilitationEngaging in critical examination of clinical rehabilitative practice creates opportunity to imagine how we might approach commonly adopted clinical approaches, including the delivery of health education, differently.Implications for clinical rehabilitation practice include delivering health education in the context of supportive therapeutic relationships that respect the knowledges and experience of young people with concussion and their parents.Implications for rehabilitation research include engaging with critical scholarship within and beyond field and disciplinary boundaries, engaging in formal educational opportunities, and connecting with less formal but invaluable communities of practice.

Participation of young women in sexual and reproductive health decision-making in Malawi: Local realities versus global rhetoric.

Despite the global prioritization of addressing adolescent girls' and young women's sexual and reproductive health (SRH) and participatory rights, little research has examined their lived experiences in shaping their engagement in SRH decision-making processes in the global South. Further, few studies have explored how structural and societal factors influence their agency and participation. This critical and focused ethnography, informed by postcolonial feminist and difference-centred citizenship theories, conducted in Malawi (2017-2018) elicited perspectives of youth and key informants to help address these knowledge gaps. Our findings show that the effective implementation and uptake of global discourse on participation and gender equity is hindered by inadequate consideration of girls' and young women's local political, cultural and social realities. Many girls and young women demonstrate passion to participate in SRH policymaking as agents of change. However, patriarchal and gerontocratic political and social structures/institutions, and gendered and adultist norms and practices limit their active and meaningful participation in SRH decision-making. In addition, donors' roles in SRH policymaking and their prioritization of the "girl child" highlight an enduring postcolonial power over agenda-setting processes. Understanding young people's experiences of gendered participation and scrutinizing underlying systemic forces are critical steps toward realizing young women's SRH and participatory rights.

Physical activity participation among adolescents with autism spectrum disorder.

LAY ABSTRACT: Adolescents with autism spectrum disorder are less likely to be physically active compared to their age-related peers. Despite the lower levels of physical activity observed among adolescents with autism spectrum disorder, it is unknown why they are predominantly inactive. Much of the research so far has focused on understanding how biological aspects influence physical activity participation. But there is little research that has examined how social and cultural components influence their physical activity participation. There is also little research that has sought the perspectives and experiences of adolescents with autism spectrum disorder. In this study, 10 adolescent boys with autism spectrum disorder created a digital story, and also participated in two face-to-face interviews. The purpose of the study was to examine how individual, social, and cultural forces influenced physical activity participation. Analysis of the data highlight that bullying, challenges in community programs, and the prioritization of therapeutic interventions limited participation. On the contrary, participants were more likely to be active when physical activity generated meaning, purpose, a sense of identity, and affective pleasures. The findings add new knowledge suggesting that adolescents with autism spectrum disorder are not simply unmotivated. Rather, physical activity participation was shaped by wider social experiences, norms, values, and practices in which they were immersed. The findings suggest a need for directed efforts to create policies and practices which are individualized and reflective of the needs and abilities of adolescents with autism spectrum disorder to promote physical activity participation and potentially enhance physical health and wellbeing.

Stigma in relation to families living with parental mental illness: An integrative review.

Stigma is a pervasive social mechanism with negative ramifications for people who experience mental illness. Less is known about the stigma experiences of families where a parent has a mental illness. This review aims to identify and synthesize evidence on the concept of stigma and stigma-related experiences and outcomes reported by parents and children living with parental mental illness. An integrative review method was employed, with PRISMA (Preferred Reporting Items of Systematic Review and Meta-Analyses) guidelines to search and select literature and extract and analyse data. This approach allows for inclusion of theoretical and empirical literature and for concept definition. Fifty-eight papers, mostly from the USA, Australia, and the UK, met the inclusion criteria. Stigma was primarily conceptualized in families as a marked difference that was negatively appraised, and which could be internalized. Some articles examined how underpinning assumptions could shape the behaviour of individuals and groups and be embedded within social institutions and structures. For parents, mental illness stigma was interconnected with stigma relating to perceived violations of social and cultural norms related to parenting. Children's experience of stigma resulted in bullying, embarrassment, guilt and social isolation, and efforts to conceal their parent's mental illness. One outcome was that stigma prevented children and parents from seeking much needed supports. Public health policies and campaigns that focus exclusively on promoting open disclosure of mental illness to foster community education outcomes are unlikely to be effective without additional strategies aimed at preventing and redressing the structural impacts of stigma for all family members.

Youth participation in sexual and reproductive health: policy, practice, and progress in Malawi.

OBJECTIVES: Ensuring youth participation in policymaking that affects their health and well-being is increasingly recognized as a strategy to improve young people's reproductive health. This paper aimed to describe the policy context and analyze underlying factors that influence youth participation in sexual and reproductive health (SRH) policymaking in Malawi. METHODS: This critical, focused ethnographic study is informed by postcolonial feminism and difference-centered citizenship theory, based on data collected from October 2017 to May 2018. Multiple research methods were employed: document analysis, focus group discussions, and "moderate" participant observation. Semi-structured interviews were conducted with key informants and youth, supplemented by open-ended drawing exercises with youth. RESULTS: Progressive policies and the presence of youth in some policymaking structures indicate substantial headway in Malawi. However, underlying structural and societal factors circumscribe young people's lived experiences of participation. CONCLUSIONS: Despite recent progress in involving young people in SRH policymaking, notable gaps remain between policy and practice. Recognizing and integrating young people in all stages of SRH policymaking is critical to catalyzing the social and political changes necessary to ensure their reproductive health and well-being.

Researching experiences of childhood brain injury: co-constructing knowledge with children through arts-based research methods.

Objective: In the knowledge base examining experiences of childhood brain injury, the perspectives of children with brain injury are notably lacking. This failure to represent the voices of pediatric clients has resulted in an incomplete knowledge base from which to inform evidence-based rehabilitation practice. In this paper, we examine why the perspectives of children with brain injury are rarely sought and propose a new way forward.Methods: We draw upon current evidence and practices in related fields and present an exemplar from an in-progress qualitative arts-based research project with children with brain injury.Results: Assumptions ingrained in research practices, particularly those surrounding the capacity of 'doubly vulnerable' children with brain injury to produce knowledge, have resulted in the relative exclusion of this group from research that concerns them. For the field to evolve, research practices must value children's first-hand accounts, engage them in co-constructing knowledge about their lives, and invite methods that meet their interests and abilities.Conclusion: By reframing how we think about the capacities of children with disabilities and shifting our research practices to include children with brain injury as knowledgeable participants, it becomes possible to expand the knowledge base upon which clinical rehabilitation practices are built.Implications for RehabilitationCurrent research practices preclude 'doubly vulnerable' pediatric populations, including children with brain injury, from actively contributing to research that concerns them.As a result, the perspectives of children with brain injury are virtually absent from research, rendering the evidence base upon which rehabilitative practices are built incomplete.Reframing how we think about the capacities of children with brain injury can shift how we engage with them, both in research and clinic, and may subsequently impact the knowledge available to us.Implications for client-centred rehabilitation are discussed, including the need to understand children as capable of insight into their own experience, as able to contribute to a more complete understanding of the health phenomena that affect them, and as invaluable and active participants in research and clinical care.

A Narrative Inquiry Into Global Systems Change to Support Families When a Parent Has a Mental Illness.

The issues that confront families when a parent experiences mental illness are complex. This often means that multiple service systems must be engaged to meet families' needs, including those related to intergenerational experiences of mental health and illness. A multisystem approach to public mental health care is widely recommended as a form of preventative intervention to address the effects of mental illness and its social, psychological, and economic impact upon parents, children, and families. Globally, a multisystemic approach to care requires a change in the way systems are currently organized to support families, as well as the way systems are interacting with families, and with each other. This qualitative secondary analysis emerged from a primary study examining global systems change efforts to support families, including components of change that were common and considered successful in different countries. A narrative inquiry method was used to re-analyze the data by compiling the stories of change described by individuals from participant countries. The data were interrogated to ask questions about story content, and to identify who was telling the story and how they described important changes across different geographical and cultural contexts. The individual stories of 89 systems change experts from 16 countries were then compiled into a shared global narrative to demonstrate international progress that has occurred over time, toward multisystemic change to support families where parents experience mental illness. While the global narrative demonstrates considerable overlap between pathways toward change, it is also important to document individual stories, as change pertains differently in different contexts. The individual stories and the global narrative illustrate how countries begin a journey toward change at different time points and may have various outcomes in mind when they commence. Study findings raise questions about the extent to which systems change can be standardized across countries that have unique social, cultural, political, and economic features. This study provides several potential points of reference for countries considering, or currently undertaking systems change to support families where a parent has a mental illness. It also provides an important story about international efforts undertaken to improve outcomes for families.

"It's all about incentive": Social technology as a potential facilitator for self-determined physical activity participation for young people with physical disabilities.

PURPOSE: To investigate the perceived role of social technologies in promoting physical activity participation for young people with physical disabilities and to identify design considerations that should be addressed when creating social technologies to promote physical activity. METHOD: Interactive design workshops for young people with physical disabilities aged 12-18 (n = 8) were held. Data were analyzed using interpretive thematic analysis. RESULTS: Young people perceived significant benefit for social technologies to promote physical activity as they have the potential to overcome many barriers to physical activity participation. Design features recommended by the participants included (1) options for diverse interests and preferences, (2) provision of informational support, (3) support through equitable technology design, (4) incentive through competition and play, and (5) opportunities to develop community. CONCLUSIONS: Social technology has potential to provide tailored, equitable opportunities for social engagement and physical activity participation for young people with physical disabilities through needs- and preference-specific design.

Children's Experiences of Cancer Care: A Systematic Review and Thematic Synthesis of Qualitative Studies.

PROBLEM IDENTIFICATION: Improvements in pediatric cancer survival have increased interest in the experiences of children undergoing treatment; however, no review of the qualitative literature describing these experiences has been conducted. LITERATURE SEARCH: Databases were searched from January 2000 to January 2016 for qualitative studies describing the experience of children with cancer aged 18 years or younger. DATA EVALUATION: Two reviewers assessed abstracts for relevance and rated reporting comprehensiveness. Participant quotations and descriptions of participants' comments and behaviors were coded. Coded data were pooled to provide a thematic synthesis. SYNTHESIS: 51 studies were included. Five themes were identified. IMPLICATIONS FOR RESEARCH: Results provide data related to the experience of children with cancer that can inform practice changes and research activities aimed at enhancing quality of life.

Issues encountered in a qualitative secondary analysis of help-seeking in the prodrome to psychosis.

Primary data are rarely used explicitly as a source of data outside of the original research purpose for which they were collected. As a result, qualitative secondary analysis (QSA) has been described as an "invisible enterprise" for which there is a "notable silence" amongst the qualitative research community. In this paper, we report on the methodological implications of conducting a secondary analysis of qualitative data focusing on parents' narratives of help-seeking activities in the prodrome to psychosis. We review the literature on QSA, highlighting the main characteristics of the approach, and discuss issues and challenges encountered in conducting a secondary analysis. We conclude with some thoughts on the implications for conducting a QSA in children's mental health services and research.

Characterizing socially supportive environments relating to physical activity participation for young people with physical disabilities.

PURPOSE: To explore the experiences of young people with physical disabilities relating to social inclusion and physical activity, in order to describe the characteristics of social environments that support participation in physical activity. METHOD: An iterative, qualitative design employed in-depth, semi-structured interviews with young people with physical disabilities aged 12-18 (n = 11). Data were analyzed using interpretive thematic analysis. RESULTS: Young people described several ways that their social environments help motivate and support them in their physical activity participation. These include providing: fair and equitable participation beyond physical accommodations; belonging through teamwork; and socially supported independence. CONCLUSIONS: Supportive social environments characterized by equitable participation, a sense of belonging, and opportunities for interdependence, play a critical role in promoting the health and well-being of young people with physical disabilities. These characteristics are important to consider in the design of both integrated and dedicated physical activity programs.

Recasting research into children's experiences of parental mental illness: beyond risk and resilience.

Children who live with a mentally ill parent are viewed primarily as being 'at risk' of developing a mental illness themselves and those who remain well are considered extraordinarily resilient. This particular risk/resilience discourse is embedded within larger contemporary discourses about risk and childhood. Childhood is seen as a critical period of development during which children need protection due to their physical and psychological vulnerabilities. In this paper, the implications of this dominant casting of children are explored and it is argued that the conceptual repertoire about those living with a mentally ill parent should be expanded. A critique of the literature that established the risk/resilience discourse is followed by a discussion of research about parenting with a mental illness within which children are surprisingly absent. Recent thinking about children arising out of the 'new' social studies of childhood is summarized to illustrate its resistance to the hegemonic image of children as passive, developing, 'unfinished' persons. A recasting of children as complex young persons who have competencies as well as vulnerabilities linked to their developmental stages, would lead to different lines of inquiry about children's experiences of mental illness in a parent.

Understanding help seeking delay in the prodrome to first episode psychosis: a secondary analysis of the perspectives of young people.

First episode psychosis represents a critical period for intervention to prevent future impairments and to initiate optimal interventions. Using an interpretive interactionist framework, a secondary analysis of interview transcripts was conducted based on the narratives of youth experiences of psychosis. Our goal was to better understand the factors involved in the decision to seek help (or not) from the mental health system. Findings suggest that help seeking is a social process involving a wide range of influences; two such influences are highlighted in this paper, an individual avoidant strategy of ignoring and hiding early symptoms, and the persuasive influence of significant others in the social network.