Setting the top 10 eating disorder research and translation priorities for Australia.

OBJECTIVES: People with eating disorders, as well as their caregivers, experience high symptom burden, reduced quality of life and increased risk of early mortality. A lack of resources, disjointed vision and limited uptake of the evidence have limited the translation and implementation of research into practice. Little is known about what stakeholders (people with a lived experience, caregivers, health care professionals, researchers and policymakers) see as the most important research priorities. This study aimed to identify Australia's top 10 consensus-derived research and translation priorities for eating disorders. METHODS: Participants (n = 606) included people with a lived experience, carers, health care professionals (clinicians) and researchers working in eating disorders. The methodology aligned with the James Lind Alliance priority setting process, which involved oversight by a co-design advisory committee and utilised a national online interim priority setting survey and co-design workshops to identify the top 10 research and translation priorities. RESULTS: The initial national consultations elicited 1210 issues from 480 individuals. From this, 606 participants shortlisted 59 plain language questions in order of personal priority. In total, 16 questions were consistently ranked as important. As a final step, 24 individuals (with equal representation from all 4 stakeholder groups) attended the final prioritisation workshop to co-establish the top 10 research and translation priorities. CONCLUSION: The findings highlight the need for people with a lived experience, carers, health professionals and researchers to work collaboratively to develop co-designed research and translation activities that address the key areas of early intervention, prevention, understanding the aetiology of eating disorders and effective treatment of people experiencing eating disorders.

A co-designed consumer checklist to support people with eating disorders to locate evidence-based treatment.

Identifying a therapist with expertise in treating eating disorders (EDs) can be a daunting process for a consumer, resulting in delayed access to evidence-based treatment, prolonging unnecessary suffering. We developed a consumer checklist designed to empower consumers to locate evidence-based treatment earlier. We co-designed (researchers and people with lived experience of an ED) a 15-item consumer checklist, for use in a meeting with a potential therapist. A survey about the checklist was sent out to people with lived experience and clinicians, seeking quantitative endorsement of each item's helpfulness in the checklist, and inviting qualitative feedback. Seventeen people with lived experience and 11 clinicians gave feedback. The items were rated as being helpful, with overlap between the two groups as to the most helpful items. Both groups rated the checklist as likely to help locate effective treatment earlier. The checklist forms a basis for a useful consumer tool in their treatment journey. Examination of its uptake and impact on outcomes for consumers seeking treatment is recommended.

Navigating the ethical complexities of severe and enduring (longstanding) eating disorders: tools for critically reflective practice and collaborative decision-making.

Decisions about the treatment of eating disorders do not occur in a socio-political vacuum. They are shaped by power relations that produce categories of risk and determine who is worthy of care. This impacts who gets access to care and recognition of rights in mental health services. Globally, there are calls for more human rights-based approaches in mental health services to reduce coercion, improve collaborative decision making and enhance community care. Treating individuals with longstanding, Severe and Enduring Eating Disorders (SEED) or Severe and Enduring Anorexia Nervosa (SE-AN) can be particularly problematic when it involves highly controversial issues such as treatment withdrawal and end-of-life decisions and, where legally permissible, medically assisted dying. In this article, we argue that the socio-political context in which clinical decision making occurs must be accounted for in these ethical considerations. This encompasses considerations of how power and resources are distributed, who controls these decisions, who benefits and who is harmed by these decisions, who is excluded from services, and who is marginalised in decision making processes. The article also presents tools for critically reflective practice and collaborative decision-making that can support clinicians in considering power factors in their practice and assisting individuals with longstanding eating disorders, SEED and SE-AN to attain their rights in mental health services.

Holding Hope: Co-producing eating disorders education that integrates the lived experience voice to inform best practice.

WHAT IS KNOWN ON THE SUBJECT?: Eating Disorder (ED) education is predominating taught through a DSM-V diagnostic criteria and clinically focused lens devoid of lived experience expertise. WHAT THE PAPER ADDS TO EXISTING KNOWLEDGE?: Current clinically focused ED education may be shaping health professional misunderstandings of EDs, influencing the therapeutic relationships between health professional and consumer which is key to the recovery process. Integrating the lived experience voice through co-produced, humanities-based ED education deepens understandings and honours the complexities of EDs by bringing a much-needed, alternate perspective to health professional learning, practice and research. WHAT ARE THE IMPLICATIONS FOR MENTAL HEALTH NURSING?: Reframing mental health education towards a more strengths-based, trauma-informed and recovery focused lens has the potential to upskill the health workforce in how to hold hope, space and learn to walk the fight with people living and recovering with an ED.