OUCRU and the Hospital for Tropical Diseases (HCMC, Vietnam) have led in the field of clinical trials for treatment of central nervous system infections, such as bacterial meningitis, TB meningitis and cryptococcal meningitis. These diseases have significant mortality rates associated with them, and the research focus has been on ‘saving lives’ through affordable and relevant treatments. However, as more lives are saved, and more people live with disability, there is a need to understand how this impacts patients’ and caregivers’ lives, so they can be adequately prepared for discharge. ‘Continuity of care’ and early rehabilitation are key factors.
Recognising that patients needed more information pre-discharge to help them continue their recovery in the community, the ‘Beyond the Hospital’ was developed. ‘Beyond the Hospital’ (BTH), was an OUCRU public engagement project, funded by a Wellcome Trust International Engagement Award and led by Annabel Audier, Professor Jeremy Day and Dr Mary Chambers, Vietnam.
The BTH project identified information needs for patients and their families and undertook a number of participatory activities including theatre, photography and workshop activities to raise awareness about challenges faced by patients and caregivers and to provide technical skills (physiotherapy, empathy, communication) to healthcare workers and coping skills to patients and caregivers. Training films, as well as visual-based patient education material were developed to share coping strategies, disease knowledge and mental health advice, as well as a directory of services for patients disabled by a brain infection.
Further information about the project can be found at: http://www.oucru.org/beyond-the-hospital-project/.
Resources to support patients and their families:
Films: These films provide an insight into the experience of some of the patients with brain infections associated with the project.
Thuy - “at that time I was very sad, it would be easier for me to just die”.
‘hồi lúc đó tôi rất buồn, chị chết còn sướng hơn đó’
Van - “I felt very sad and shocked because my attended doctor said that I had to be treated for 9 months”.
“Tôi cảm thấy rất buồn và sốc vì bác sĩ tham gia của tôi nói rằng tôi phải điều trị trong 9 tháng”
Tien - “People who will have the disease later should not worry too much, because if you are too worried, it affects your mental state negatively, you should be more carefree then it will pass before you even notice it”.
‘Những người mắc bệnh sau này không nên lo lắng quá nhiều, vì nếu bạn quá lo lắng, nó ảnh hưởng tiêu cực đến trạng thái tinh thần, bạn nên vô tư hơn sau đó sẽ vượt qua trước khi bạn nhận ra điều đó’
Mai - an animation to motivate patients and their relatives on their recovery process after a disease.
một bộ phim hoạt hình để động viên người bệnh và cơ thể của họ đang trong quá trình hồi phục sau bệnh tật.
Emotional needs – This handbook explains how a brain infection may affect the emotional state of a patient. It aims to support patients and their carers on their physical and mental journey to recovery.
A patient’s story – This story is illustrated with images to help relatives understand that they can play an extremely important role for the recovery of patient’s health.
English: A patient's story pdf
Vietnamese: A patient's story pdf