Beyond the Hospital project

‘Beyond the Hospital’ (BTH) was a 22-month public engagement project, funded by a Wellcome Trust International Engagement Award from 2014-2016 and led by Annabelle Audier, Professor Jeremy Day and Dr Mary Chambers. OUCRU and the HTD 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.

The BTH project started with the hypothesis that patients need more information pre-discharge to help them continue their recovery in the community. Through the project we identified information needs, developed information resources and initiated new avenues for collaboration and information sharing. Using our qualitative research findings as an evidence base, we 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.  We also developed training films to be shown on DVDs and the internet, as well as visual-based patient education material to share coping strategies, disease knowledge and mental health advice, as well as a directory of services for patients disabled by a brain infection.

Final report: link EN

Materials

1. A patient’s story:  link EN –  link VN

The “patient story” is illustrated with images to help relatives understand that they can play an extremely important role for the recovery of patient’s health.

2. How to respond to emotional changes after an infection on the brain: link EN –  link VN

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.

3. Directory of organizations supporting the disabled in Southern Viet Nam: link VN

This handbook offers information on social resources available,  and a directory of support agencies for the disabled after hospital discharge in Southern Viet Nam.

4. Directory of physiotherapy centers for the disabled in Southern Viet Nam: link VN

This handbook includes information about physiotherapy centres offering services to the disabled in Southern Viet Nam.

Documentary films

1. A PATIENT RECOVERING STORY

In collaboration with Hospital of Tropical Diseases Ho Chi Minh City, Viet Nam; Oxford University Clinical Research Unit (OUCRU) created an animation to motivate patients and their relatives on their recovery process after a disease. The carers should spend more time and attention on taking care of the patients because they understanding more about the problems patients may face. This care will also help support the mental health of the patients and speeding their recovery. We hope that patients and carers find this story inspiring and useful in the recovery process.

2. HOW DID HOÀNG THỊ VÂN RECOVER AFTER A BRAIN INFECTION?

Three years ago, Van was seriously ill with a brain infection. She was admitted and treated at Hospital of Tropical Diseases. “I felt very sad and shocked because my attended doctor said that I had to be treated for 9 months” Van said. She was dealing with an array of problems such as difficulty with urination, vision blurriness, and depression. Despite being hospitalized for 1 month, she was attentively cared for by her husband whom together with her children was her emotional and physical support during this period. Now, three years later, she can now able to support her family car washing and pepper business; she can also help the family with daily chores ranging from cleaning to cooking meals.

3. NGUYỄN THÁI THUỶ ROAD TO RECOVERY AFTER A BRAIN INFECTION

Three years ago, Thuy was treated for a brain infection in Hospital of Tropical Diseases. At the time, she had problems related to hearing loss, visual blurriness and extremity weakness. This can be regarded as the most difficult time for her family, a period of time described by her as “at that time I was very sad, it would be easier for me to just die”. Thanks to the emotional support and diligent care from her husband, parents and especially her children, she has recovered successfully. Now, she can manage her grocery store, support the family with daily household chores and assist her daughter with elementary assignments.

4. HOW TRẦN MINH TIẾN ENCOURAGE OTHER PATIENTS AFTER A BRAIN INFECTION?

“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” Tien, a patient who was diagnosed and treated successfully for CNS at Hospital of Tropical Diseases, happily said. After returning home, the supporting role of his parents and the welcoming environment of his fishing neighborhood helped tremendously to recover. He can now return to his fishing job and support his family by doing so.