COVID-19 Lived Experience Study

We invite you to take part in this study conducted by the Institute for Research and Development in Health and Social Care, with permission from the Ministry of Health and Indigenous Medical Services, Sri Lanka.

Please take the time to read this information sheet carefully, it will help you understand why this research is being conducted and what it will involve. You are free to decide whether or not to take part.

Feel free to contact us if you would like more information.

Why are we doing this project?

• The COVID-19 pandemic caused a sudden change in the lives of Sri Lankan citizens. Compared to other countries, it is well controlled due to the efforts of the government’s special COVID-19 task force. As of 28th of May 2020, over 745 Sri Lankans have recovered from the COVID-19 infection.
• The COVID-19 pandemic is a novel challenge for our nation’s health services, therefore the lived experiences of those who recovered from the infection provide an important learning opportunity.
• Why am I being invited to take part?
• You have been invited to take part in this study, because you were treated for COVID-19 at a hospital in Sri Lanka.
• Do I have to take part?
• Your participation in this study is voluntary. Your decision will not affect current or future health care services you receive.
• What type of a research study is this?
• You have been invited to participate in a cohort study where data will be collected in a period of 12 months. Since the initial contact, survey data will be collected through a safe and convenient method on five occasions. We are also planning to conduct 25-30 individual interviews and if you get selected for that, we will invite you to participate.
• What if I want to leave the study at any point?
• You do not have to give any reason for leaving the study and you are entitled to leave at any time before, during or up until one week from your interview and survey completion date. Once a week has passed, the data you provided will be transcribed and entered into a database. Therefore, it will not be possible to withdraw data from the study. However, you may ask us not to include your quotes in the write-up and in any publications.
• What would I need to do if I take part?
• If you wish to take part, you will be asked to sign a consent form. This will show that you have read this information sheet and agree to take part in this study.
• Then you will be asked to complete a survey sent to you as a Google sheet or Email. The questions will assess your current mental health status, coping process and quality of life. This would take approximately 40 minutes.
• If you do not have access to internet services, with the permission of Ministry of Health and Indigenous Medical Services we will contact PHI officers of your area and make alternative arrangements to accommodate you.
• If you get selected for an interview, a research assistant will conduct a telephone interview via landline, mobile phone, Whatsapp, Viber or any other voice communication application convenient to you. This would take approximately 30 minutes and the interview will be audio recorded with your permission.
• During the interview your perceptions, attitudes, emotions and psychological response towards COVID-19 will be discussed. This will include your experiences regarding medical services provided and reactions from family members, neighbours, workplace and wider society after you were discharged from the hospital.
• After 3, 6, 9, 12-months from the initial survey, you will be invited to complete the questions on mental health.

What are the benefits of taking part?

Many people find it helpful to discuss their personal experiences in situations like this, as it gives them relief and confidence. Your experiences are extremely important, in developing new strategies to enhance health and social care services in Sri Lanka. We will share our findings with relevant government authorities, so they can implement the required changes.

We will publish our findings in international forums, so that foreign governing bodies may learn from the Sri Lankan experience and implement appropriate changes in their countries. However, your personal details such as name, address etc. will NOT be published.

Is the project confidential?

• There are no significant risks associated with participation. We will be even paying Rs. 100 for your communication expenses.
• You may feel disturbed when recalling some of your experiences during the interview. However, we are there to support you if you feel any distress or disappointment.
• If you feel that certain questions are uncomfortable, distressing or intrusive, you are free to refrain from answering them.
• If you have negative thoughts and feel disappointment after taking part in the study, you are more than welcome to speak to us. If we find any mental health condition which requires treatment, with your permission we will direct you to relevant government health care services.

Are there any risks associated?

• The information you give us will be kept confidential and used only for research purposes that benefit health care.
• Your information and data will be anonymised, only members of the research team will be able to identify the data.
• The anonymised data will be kept securely at the Institute for Research and Development for 10 years after completing the study.
• Personal information in consent forms will be stored for 6-12 months and will be destroyed thereafter.
• You will not be identified in any reports/research papers. This means that we will not associate your name or any other information that might link you to the study.
• Anonymised data and/or quotes may be used in the study write-up and future research.

Who has reviewed the study?

This study has been reviewed and approved by the Ethics Review Committee of the Faculty of Medicine and Allied Sciences, Rajarata University of Sri Lanka (No: ERC/2020/XX). If you have any complaints regarding the conduct of the study, you may inform the Ethics Review Committee.

ERC Office
2nd Floor, Para-clinical Building
Faculty of Medicine and Allied Sciences
Rajarata University of Sri Lanka
Saliyapura.
(Tel. No. +94 252053633 | Email – ethicsreviewcommittee@gmail.com)