"Always, always have hope:" persons with lived experience, carers and health professionals' experiences before and after discharge from hospital for an eating disorder.

BACKGROUND

Eating disorders can result in inpatient admissions. The transition of care between this tier of service and outpatient support can be challenging, particularly without intensive outpatient options. The potential benefits of providing intensive outpatient options during this transition period are significant, however there is limited research in this area. This study aimed to understand the experiences and needs of persons with lived experience, carers and health professionals before and after this transition in care for adults in Australia.

METHODS

Using mixed quantitative and qualitative methodology, and experience based co-design principles and processes, we gathered individual experience (stage 1) and developed an understanding of the care transition (stage 2). In stage 1, persons with lived experience and carers were interviewed. Health professionals were surveyed using an online questionnaire. In stage 2, preferences for support were explored in workshops. Findings were analysed using descriptive statistics (quantitative data) and inductive content analysis (qualitative data).

RESULTS

Stage 1: Five persons with lived experience and six carers were interviewed. Seventy-three health professionals completed the questionnaire. Stage 2: Two persons with lived experience, two carers and three health professionals participated in workshops. Given the small sample sizes, findings should be interpreted as exploratory. We identified three themes in stage 1: (1) Eating disorder care has the potential to be disempowering, traumatic and isolating but can also be motivating and hopeful, (2) Inpatient care does not always prepare patients for success prior to discharging, (3) Transitioning into outpatient care has the potential to be inequitable, expensive or non-existent. Preferred priority areas for improvement (stage 2) included individualised holistic and empathetic care, practical and timely post-discharge support, additional supportive networks, cultural change in healthcare, workforce training and development, and consistency in service offerings and equity of access.

CONCLUSIONS

The return home from inpatient care can be difficult to navigate, marked by a lack of continuity of care and insufficient resources. This research highlights areas to target in co-designing a support system for adult patients with eating disorders after discharge from inpatient care.