Lived Experience Research Articles

Association of Resilience-Related Life Experiences on Variability on Age of Onset in Dominantly Inherited Alzheimer Disease.

It remains unknown whether the associations between protective lifestyles and sporadic dementia risk reported in observational studies also affect age at symptom onset (AAO) in autosomal dominant Alzheimer disease (ADAD) with predominant genetic influences. We investigated the associations between resilience-related life experiences and interindividual AAO variability in ADAD. We performed a longitudinal and confirmatory analysis of the Dominantly Inherited Alzheimer Network prospective observational cohort (January 2009-June 2018, follow-up duration 2.13 ± 2.22 years), involving clinical, CSF, and lifestyle/behavioral assessments. We performed a 2-pronged comprehensive resilience assessment in each cohort. Cohort 1, incorporating the general resilience definition (cognitive maintenance [Clinical Dementia Rating = 0] despite high pathology), included carriers during the periods of significant CSFp-tau181 variability and grouped into resilience/resistance outcome bins according to the dichotomous pathologic and cognitive statuses, subcategorized by the estimated years from expected symptom onset (EYO). Cohort 2, focused on ADAD-specific genetically determined time frame characterizing the onset predictability, included asymptomatic participants with available preclinical lifestyle data and AAO outcomes and grouped into delayed or earlier AAO relative to the parental AAO. Associations of cognitive, CSFp-tau181, and lifestyle/behavioral predictors with binary outcomes were investigated using logistic regression. Of 320 carriers (age 38.19 ± 10.94 years, female 56.25%), cohort 1 included 218 participants (39.00 ± 9.37 years, 57.34%) and cohort 2 included 28 participants (43.34 ± 7.40 years, 71.43%). In cohort 1, 218 carriers after -20 EYO, when the interindividual variability (SD) of CSFp-tau181 first became more than twice greater in carriers than in noncarriers, were grouped into low-risk control (asymptomatic, low pathology, n = 103), high-resilience (asymptomatic despite high pathology, n = 60), low-resilience (symptomatic despite low pathology, n = 15), and susceptible control (symptomatic, high pathology, n = 40) groups. Multivariable predictors of high resilience, controlling for age and depression, included higher conscientiousness (odds ratio 1.051 [95% CI 1.016-1.086], p = 0.004), openness to experience (1.068 [1.005-1.135], p = 0.03) (vs. susceptible controls), and agreeableness (1.082 [1.015-1.153], p = 0.02) (vs. low resilience). From 1 to 3 years before parental AAO (cohort 2), the multivariable predictor of delayed AAO, controlling for CSFp-tau181, was higher conscientiousness (0.916 [0.845-0.994], p = 0.036). Among the cognitively and socially integrated life experiences associated with resilience, measures of conscientiousness were useful indicators for evaluating resilience and predicting future dementia onset in late preclinical ADAD.

Filling literary gaps of convention

ABSTRACT This article is an interrogation of gaps which hide sex in literature. Avoiding the narration of sex is a persistent narrative convention in much literary fiction, and these gaps offer an opportunity for creative writing to intervene. My critical enquiry is grounded in my creative writing practice, which is further grounded in lived experience of disability. As an embodied orientation to the world and a critical concept, disability can be productively used as a methodology which challenges ingrained attitudes to embodiment and capacity, thereby, according to Siebers, ‘defamiliariz[ing] how we think currently about sex’, and how we write it. Following a theoretical elaboration of the presence of absence in narrative, I present an original story ‘How to be an Other’, which plays with Lorrie Moore’s ‘How to be an Other Woman’ and which offers a practical application of how gaps can be generative of new ways of thinking.

The Role of a School-Community Partnership in Enhancing Inclusive Special Education within a School District

ABSTRACT This study examined the role of a school-community partnership in enhancing special education within a public school district. Specifically, it sought to understand both the influences on and the influences of the school-community partnership. Factors considered by the partnership included research, data, expertise, resource constraints, and lived experiences. The partnership’s influence included changes in classroom practices and professional development, as well as increased knowledge about inclusive special education and families’ goodwill toward the school district. Though the partnership did not have a district-level policy influence on special education, it did have a demonstrable influence in localized yet impactful ways.

Complex PTSD symptoms predict positive symptoms of psychosis in the flow of daily life.

Post-traumatic stress disorder (PTSD) has been shown to predict psychotic symptomology. However, few studies have examined the relative contribution of PTSD compared to broader post-traumatic sequelae in maintaining psychosis. Complex PTSD (cPTSD), operationalized using ICD-11 criteria, includes core PTSD (intrusions, avoidance, hyperarousal) as well as additional "disturbances of self-organisation" (DSO; emotional dysregulation, interpersonal difficulties, negative self-concept) symptoms, more likely to be associated with complex trauma histories. It was hypothesized that DSOs would be associated with positive psychotic symptoms (paranoia, voices, and visions) in daily life, over and above core PTSD symptoms. This study (N = 153) employed a baseline subsample of the Study of Trauma And Recovery (STAR), a clinical sample of participants with comorbid post-traumatic stress and psychosis symptoms. Core PTSD, DSO and psychosis symptoms were assessed up to 10 times per day at quasi-random intervals over six consecutive days using Experience Sampling Methodology. DSOs within the preceding 90 min predicted paranoia, voices, and visions at subsequent moments. These relationships persisted when controlling for core PTSD symptoms within this timeframe, which were themselves significant. The associations between DSOs and paranoia but not voices or visions, were significantly stronger than those between psychosis and core PTSD symptoms. Consistent with an affective pathway to psychosis, the findings suggest that DSOs may be more important than core PTSD symptoms in maintaining psychotic experiences in daily life among people with comorbid psychosis and cPTSD, and indicate the potential importance of addressing broad post-traumatic sequelae in trauma-focused psychosis interventions.

Exploring the Institutional and Personal Determinants of Social Entrepreneurial Intentions: A Cross-Country Analysis

In this dynamic world with complex social, ecological, and economic problems, social entrepreneurship has emerged as a beacon of hope since the beginning of this century. The present study analyzes personal and country-level institutional antecedents of social entrepreneurial intentions (SEI) among business students of universities in Bangladesh, Malaysia, Romania and the USA. Our surveys resulted in a total of 788 valid responses (precisely 148 respondents from the USA, 242 from Romania, 213 from Malaysia, and 185 from Bangladesh). The research findings demonstrate that personal factors such as prior hardship in life and prior entrepreneurial experience are significant predictors of SEI, across the four country samples. From the institutional perspective, perceived social support has a positive influence on SEI in all the country samples except the USA, while entrepreneurial knowledge has a positive influence on SEI in the USA, Malaysia, and Bangladesh samples but not in the Romanian sample. However, the regulatory volatility does not affect SEI in any of the country samples except Bangladesh, where it has a positive impact.

“There’s no good, it’s just satisfactory”: perfectionism, performance, and perfectionistic reactivity in NCAA student-athletes

ABSTRACT Perfectionistic reactivity is a characteristic style of responding to adversity that elicits a bio-psychosocial response. Those with elevated levels of perfectionistic tendencies are thought to react disproportionately in the face of successes or failures. The present two-study paper was designed to understand the role of perfectionism in predicting season-long performance in collegiate golf while also gaining insight into NCAA student-athletes’ lived experiences of perfectionism and reactivity. In Study 1, self-report measures of perfectionism were collected from 46 NCAA golf student-athletes. Tournament scores were then recorded over the NCAA’s 12-week competitive season. Data were examined using a two-level hierarchical linear model to test the moderating effect of perfectionism on student-athlete hole-over-hole performance across an entire season. In Study 2, semi-structured interviews were conducted with six student-athletes from the Study 1 sample who had self-reported high levels of perfectionistic strivings and concerns. Data were examined utilizing reflexive thematic analysis. Collectively, findings suggest that there is still work to be done to wholly understand the influence of perfectionism on sporting performance. However, athletes revealed during interviews that they experience perfectionistic reactivity through a multitude of biopsychosocial dimensions related to affect, behaviour, and cognition. Findings will allow future scholars to examine different measures of perfectionism across different performance intervals while considering the conceptual and empirical underpinnings of perfectionistic reactivity. Furthermore, future research could be designed to understand the specific circumstances under which specific thoughts, feelings, and behaviours are experienced in relation to perfectionistic reactivity.

Returning to Motherhood: Post-Incarceration Reintegration and Mothering for Justice-Involved Black Women

Feminist criminologists have centralized gender’s importance in studying justice-involved women’s lives, but understanding how socio-cultural expectations and racialized constructions of motherhood affect post-incarceration reintegration is lacking. Extant research overlooks the consequences of incarceration for poor, Black mothers. To rectify this gap, this paper uses qualitative data collected from semi-structured interviews and participant observation with 12 formerly incarcerated Black mothers residing in a large urban city in the midwestern United States. This article fills this gap by using an intersectional framework to illuminate the conflicts between their lived experience as women with criminalized social identities and the societal expectations placed upon them as women and mothers. Findings reveal that post-incarceration reintegration reintroduces stressors associated with mothering while also magnifying the effects of criminalization, punishment, and resource constraints for justice-involved women and mothers.

Deciphering visceral instincts: a scientific quest to unravel food choices from molecules to mind.

The study of biological mechanisms, while crucial, cannot fully explain complex phenomena like the instinct to eat. The mind-body connection, as exemplified by the concept of "voodoo death," highlights the profound influence of belief and cultural context on physiology. Indigenous knowledge systems further emphasize the interconnectedness of humans with their environment. Recent discoveries in gut-brain communication reveal the intricate neural circuits that drive our visceral desires, but a holistic approach that integrates both physiological mechanisms and the subjective experience of life, informed by diverse cultural perspectives, will be essential to truly understand what it means to be alive.

Reducing mental health stigma in academia: Assessing the acceptability of a first-person narrative program.

Academics are more likely to experience mental health difficulties like depression and anxiety. However, stigma remains a key barrier to help-seeking, and limited data exists on stigma reduction for academics. This study examines the acceptability of a first-person narrative-based antistigma program conducted by Dragonfly Mental Health at a large public university. This intervention used a multitiered approach that leverages education and contact strategies to reduce stigma among graduate students, postdoctoral fellows, staff, and faculty. Personal stories of six local faculty with lived experience of mental health struggles were shown in a short film during three separate departmental retreats, followed by moderated large and small group discussions. This study presents descriptive survey data from academics (N = 149) who attended one of these three programs. A thematic content analysis was conducted on open-ended responses from 86 participants. Overall, the Dragonfly Mental Health program was well-received: 95% of participants found the film beneficial, and over 92% felt the film and discussions reduced stigma. Qualitative analysis highlighted several themes on participants' experiences. Participants appreciated the open, honest disclosures of faculty members in the film but reported that the vague disclosures perpetuated stigma. Participants liked the normalization of mental illness but desired more representation from the mental health spectrum. Participants expressed frustration over an academic work culture that is defined by overwork and burnout. These findings suggest that sharing faculty stories is a powerful mechanism to build connectedness among academics, promote open communication, and foster change in academic culture around mental health. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

(Mis)recognising the symbolic violence of academically selective education in England: a critical application of Bourdieusian analysis to pupils’ lived experiences

ABSTRACT This paper contributes to critical scholarship of the concept of symbolic violence by raising two questions. The first concerns the extent to which symbolic violence is recognised and misrecognised by those who experience it. The second problematises the relationship between symbolic violence and social justice by considering how an accepted relationship of disadvantaged = dominated is itself a misrecognition. The specific form of symbolic violence I explore relates to the English system of academically selective education. I examine the lived experiences of three pupils who took and did not pass the ‘11+’ (the exam taken by pupils which determines entrance to an academically selective ‘grammar’ school). The tools of pedagogic action, pedagogic work and pedagogic authority are used to demonstrate how symbolic violence operated in the ‘everyday suffering’ of the pupils. I also highlight that such suffering enhanced pupils’ awareness of the rules of the game allowing them to recognise the potential for capacitation that arose from intentional compliance with the dominant. Re-positioning the pupils as not in need of emancipation highlights the misrecognition within the relationship between symbolic violence and social justice. I argue that recognising the contextual complexities of social justice is a means of countering such misrecognition.

Challenging the boundaries of citizenship: Alevi citizens’ pursuit of equal citizenship in Turkey

ABSTRACT Marking Turkey’s 101st anniversary since the founding of the Republic in 1923, this article explores the enduring demand of Alevi citizens for recognition and equality. Addressing a gap in citizenship literature, this study scrutinizes the century-long struggle for equitable citizenship among Alevi citizens. Grounded in classical and critical perspectives, it delves into citizenship dynamics, specifically the quest for equal citizenship by Alevi citizens. Guided by the Alevi issue, the research examines the interplay between theoretical constructs, lived experiences, and the ongoing pursuit of equitable civic recognition. Drawing insights from in-depth interviews with five Alevi civil society organization representatives, this study provides first-hand perspectives on challenges to conventional citizenship definitions. Emphasizing historical grounding and geographical responsiveness, the article underscores the experiences of marginalized communities, challenging state-centric perspectives. This research contributes to the evolving understanding of citizenship, emphasizing the continued importance of equal citizenship in Turkey and beyond.

Sojourning and Being Well Among Contemporary Chinese Gay Men in a Tourism Destination: An Extension of Dynamic Equilibrium Theory

This study proposes an extension of the dynamic equilibrium model to investigate the intrinsic mechanisms underlying the well-being experiences of Chinese gay tourists visiting Thailand. The enhanced model incorporates elements such as stock-challenge, flow-resource, and self-concept clarity, which illuminate the intrinsic dynamics of the inner well-being framework. Findings were derived from a video ethnography conducted collaboratively by researchers and participants. The results demonstrate that the impact of sojourning on well-being among gay Chinese travelers is influenced by their typical life and travel experiences, as well as the personalized meanings they associate with tourism and well-being. These responses are intricately shaped by their personal, social, and cultural contexts. This research provides rich insights into the holiday experiences and behaviors of contemporary Chinese gay adults, emphasizing the need for the development of tailored tourism policies and marketing strategies to cultivate gay-friendly destinations within the Asia region.

Don’t Tell Me to Have, but to Do It! The Role of Luxury Desirability Motives in Reducing Counterfeiting Schadenfreude

Abstract This paper postulates that consumers’ desire for doing-luxury – pursuing luxury with the intention of acquiring a life experience (vs. having-luxury) – pursuing luxury with the intention of acquiring a material good reduces counterfeiting schadenfreude – consumers’ feelings of pleasure from the losses of luxury brands due to counterfeiting. Two experiments employed various methods of invoking doing-luxury (vs. having-luxury) – actual product exposure and brand positioning to test the predicted framework. The results demonstrate that doing-luxury (vs. having-luxury) leads to a lower counterfeiting schadenfreude; an effect explained by the lower perceived similarity. This research makes an important contribution to the counterfeiting and experiential marketing literature by demonstrating the role of brand positioning in reducing a critical counterfeit-related social emotion. The results also validate the relevance of the intentions-based distinction of experiential versus material purchases in predicting counterfeiting schadenfreude. To reduce counterfeiting schadenfreude, luxury brands must signal an ephemeral image focusing on moments of luxury rather than functions of luxury. In addition, ad appeals must invoke sensory elements, feelings, emotions, imagination, and mental stimulation rather than the hard facts about the products per se.

Exploring the cessation process from adolescence to young adulthood in individuals with lived experience of nonsuicidal self-injury: a qualitative study.

Nonsuicidal self-injury (NSSI) is a common and concerning behavior in adolescents. However, most adolescents cease NSSI as they transition into adulthood. Increased knowledge of the cessation process is needed. This study aimed to qualitatively explore the factors contributing to NSSI cessation in individuals with lived experience of NSSI, providing valuable insights for treatment strategies. Twenty-six individuals assigned female sex at birth, between ages 20-22 years, from Sweden were interviewed between 2021 and 2023 in Linköping, Sweden. Of these, 21 individuals perceived themselves as having ceased NSSI and were included in the analysis. Thematic analysis and Hooley and Franklins' Benefits and Barriers Model of NSSI were used to analyze the transcripts. Three overarching themes were generated: "Something inside me changed", "Something in my close relationships changed", and "Something in my life context changed". The cessation of NSSI was associated with several key factors. Improved well-being and envisioning a different future were pivotal in initiating the cessation process. Additionally, interpersonal relationships and support from others were interpreted as powerful motivators for change. Transitioning to a new social context and leaving behind a destructive environment provided opportunities for personal growth and enhanced well-being, interpreted as initiators in the participants' broader life context. This study underscores the complexity of the NSSI cessation process and highlights the need for a comprehensive understanding of the underlying factors. Access to emotion regulation skills was perceived as a significant barrier to NSSI engagement. Clinical implications and different interventions to support NSSI cessation are discussed.

"I Am Forever Changed": A Phenomenological Study of the Existential Experiences of Parents of Children and Young People With Complex Care Needs.

To explore the existential lived experiences of parents of children and young people with complex care needs. An explorative qualitative design. We conducted 16 in-depth interviews with parents of children and young people with complex care needs across Norway from February to May 2022. Data collection and analysis were guided by the theoretical framework of van Manen's phenomenology of practice approach. Four distinct but interwoven themes reflecting the comprehensive and holistic nature of parents' existential lived experiences emerged: lived body: "I am forever changed"; lived space: Seeking sanctuary; lived time: "Time doesn't seem to exist"; and lived self-other: Parents' changing relationships. Parents' ongoing efforts to manage fluctuations in their daily lives profoundly affect the existential aspects of their well-being, suggesting that respectful and attentive nurse-parent relationships can nurture existential growth. There is a crucial need for a genuine nursing presence characterised by an attitude of open sensitivity and attentive listening to parents' existential experiences. Nurses should embrace the opportunity to engage in respectful and attentive dialogues with parents. Acknowledging that the insights emerging from these conversations can improve integrated and personalised nursing services worldwide. Parents of children and young people with complex care needs often experience suboptimal healthcare. Additionally, access to quality healthcare services, particularly in rural areas, is limited, creating inefficiencies and coordination challenges. This study provides nurses, other health care professionals, researchers, and decision-makers with valuable perspectives on supporting parents' existential needs which may significantly impact their overall well-being and coping abilities, contributing to a more compassionate approach to family care. Consolidated Criteria for Reporting Qualitative Research (COREQ). Parents of children and young people with complex care needs provided valuable feedback on the findings and implications of this work.

Public-engagement strategies of the South Asian COVID-19 Task Force: The role of racialized healthcare workers in COVID-19 mitigation in Ontario.

The COVID-19 pandemic began in late 2019 and its uneven impact across different communities globally was quickly evident. In Canada, South Asian communities were disproportionately affected. In response, the South Asian COVID-19 Task Force (SACTF) emerged, seeking to address the unique challenges faced by the South Asian community. The embedded single case study design was employed to explore the role of SACTF in COVID-19 mitigation in Ontario. Informed by critical race theory and a public engagement conceptual framework published by the Canadian Health Services Research Foundation (2010), we analyzed how contexts guided the goals, processes, and outcomes of SACTF activities. We conducted one-on-one semi-structured interviews and focus group discussions with SACTF's Board of Directors and analyzed SACTF-produced knowledge dissemination materials and media coverage of SACTF spanning March 2020 to February 2022. SACTF's success in educating and advocating for South Asians offers important insights into the gaps in public health communication and the inequities in healthcare delivery. It emphasizes the importance of tailoring emergency responses to community-specific needs and the role of racialized healthcare workers in facilitating trust-building within minority communities. By incorporating insights of racialized healthcare workers in health system decision-making, both public engagement and community health outcomes can be improved. This study contributes to a nuanced understanding of community-centric pandemic responses and demonstrates the need for diverse representation in decision-making processes for long-term health system resilience. Both healthcare knowledge and lived experiences made SACTF alert to how pandemics unfold differently and have differential effects on racialized populations. SACTF's responses offer practical recommendations for future pandemic preparedness and emergency responses, emphasizing the role of advocacy groups in addressing public health gaps and serving as crucial allies for communities and governments.

Pathways for Strengthening Lived Experience Leadership for Transformative Systems Change: Reflections on Research and Collective Change Strategies.

The Activating Lived Experience Leadership (ALEL) project was a South Australian participatory action research project that aimed to improve the ways lived experience is recognised, valued and integrated across mental health and social sector systems. ALEL was completed during 2019-2021, where it engaged 182 participants in generating community action and research knowledge. Our paper discusses the project's processes of building a collective partnership among lived experience leaders and other leaders from within the sector, so that the actions and strategies identified through research could be implemented by systems-level impact. We describe the collaborative process and key learnings that resulted in eight key action areas for transformative systems change in South Australia. The project invited a diverse range of self-identified lived experience and other leaders to be involved in a PAR process featuring formal qualitative research (focus groups, surveys and interviews) as well as community development activities (leaders' summit meetings, consultations, training and community of practice meetings). These processes were used to help us describe the purpose, achievements and potential of lived experience leadership. Project priorities and systems-level analysis was also undertaken with lived experience sector leaders and project advisors across two leaders' summit meetings, integrating research outcomes with sector planning to define high-level actions and a vision for transformational change. Participatory action research as informed by systems change and collective impact strategies assisted the project to generate detailed findings about the experiences and complexities of lived experience leadership, and collective responses of how systems could better support, be accountable to and leverage lived experience perspectives, experience and peer-work approaches. Systems change to define, value and embed lived experience leadership benefits from collective efforts in both formal research and sector development activities. These can be used to generate foundational understandings and guidance for working together in genuine ways for transforming mental health and social sector systems, experience and outcomes. Members of lived experience communities codesigned the project, and contributed to project governance and the development of all findings and project reports.

Tailoring midwifery care to women's needs in early labour: The cultivation of relational care in free-standing birth centres

AimTo understand and interpret the lived experience of newly qualified midwives in their first year in a free standing birth centre caring for women in early labour. BackgroundWomen who present in hospital labour wards in early labour are encouraged by hospital staff to go home. This leaves women to navigate early labour without professional care, leaving them on their own to manage the transition from early to active labour. However, some women request care for this transition. DesignThis is a Heideggerian hermeneutic phenomenology study. MethodsThree unstructured interviews were conducted with 15 newly qualified midwives in their first year working in a free-standing birth centre. This paper focuses on the research participants’ lived experience offering care to women in early labour. The study was conducted from 2021-2024. FindingsThree themes were revealed in analysis: “Paving the way into labour”: Tailoring care to women's needs in early labour; “Perhaps it was intuition.”: Experiencing deeper knowing as a newly qualified midwife; and “She locked the door and wouldn't let me in.”: Navigating uncomfortable situations in early labour. ConclusionsThe lived experience of newly qualified midwives offering care in early labour shows potential for midwives to build trusting relationships with women in this phase. Relevance to clinical practicePrioritizing relational care over interventions in early labor can enhance trust and confidence between midwives and birthing women, particularly in settings where policies discourage early admissions. IssueWomen presenting in hospital labour wards in early labour who are sent home are often discouraged, feeling that their concerns and embodied experiences have not been heard. What is already knownWhen labouring women are admitted to hospitals in early labour, they are prone to receive a cascade of interventions. What this paper addsWhen newly qualified midwives began working in free-standing birth centres, they acquired skills and knowledge to accompany women in early labour who requested care. Relational care in early labour builds women's trust in their ability to give birth and does not rely on interventions to augment labour.

Explaining the Family-Centred Care of Young People With Depressive Disorders and Suicidal Ideations: A Grounded Theory Study.

This study aimed to develop a theory to guide family members caring for young people with depressive disorders and suicidal ideations. Strauss and Corbin's Grounded Theory. Theoretical sampling was used to recruit primary family caregivers (aged 22-60) of young people experiencing depressive disorders and suicidal ideations from hospitals and psychiatric clinics in Taiwan. Data were collected using interviews (n = 23) in 2023. Data were analysed using Corbin & Strauss' analytical framework, including open, axial and selective coding until theoretical saturation was reached. A paradigm model was used to link the 13 categories and develop a substantive theory to help guide family members in the care of their young persons with depressive disorders and suicidal ideations. The core category that emerged was 'Struggling to contain the young person's life by adjusting, assisting, and protecting them from diving into depression'. Other key categories interconnected with this core category were-creating a nurturing environment, adjusting to changes, protecting the young person's safety and assisting with their medical treatment. Family caregivers could use this theory as a guide to enhance the care of young persons experiencing depressive disorders and suicidal ideations and accompany them alongside the healing process. Nursing professionals could provide psychoeducation to family caregivers on how to hold the young person gently and acquire compassion for the young persons' lived experience, thoughts and emotions, by creating a nurturing environment, adjusting to changes, protecting their safety and assisting with their medical treatment. This theory provides valuable guidance for future intervention research aimed at improving family caregivers' ability to care for young persons with depressive disorders and suicidal ideations. The COREQ guidelines were utilised. No patient or public contribution.

Identifying Service, Research and Policy priorities for preventing the impacts of family adversity on children’s mental health: An Australian national resource allocation study with professional and lived experience experts

ObjectivesThe objective of this study was to develop Service, Research and Policy priorities to prevent the impact of family adversity on child mental health and determine comparative priorities of diverse stakeholders to those with lived experience of adversity. MethodsValue-weighting approach conducted in a staged process: (i) professionals and experts with lived experience from health, education, justice and social care sectors attended a national symposium to identify priorities for family adversity and mental health and (ii) a subsequent resource allocation survey gathered views from participants and external experts on symposium priorities. ResultsConsensus was reached on priorities. Service priorities included establishing intersectoral hubs for children and families and early childhood nurse home-visiting programs. Research priorities included scaling up evidence-based interventions and evaluating cross-sector, flexible funding models for services addressing childhood adversity. Policy priorities included developing evidence-based policies with evaluation and implementation plans and flexible funding models to support integrated care. ConclusionsOur results provide detailed and actionable clarity on next steps to address family adversities. Implications for Public HealthThe priorities call for a focus on cross-sectoral approaches to preventing or mitigating the effects of family adversity. The current Australian policy environment provides a timely opportunity to action the proposed interventions.