Knowledge, attitudes and behaviors of patients towards informed consent in Qatar: Early results from semi-structured interviews

Background and objective: Informed consent procedures widely used in the Western world are not always adapted to regional customs and the expectations of regional patients and their families. This qualitative study is the first step of a larger project aimed at exploring culturally appropriate ways to obtain fully informed, meaningful consent from patients. The current qualitative study's objective is to describe patients' and family members' knowledge, attitudes and behaviors towards the informed consent forms they sign before undergoing treatment in Qatar. Methods: Between June and August 2013, our group conducted fifty-three semi-structured interviews with forty patients and thirteen family members at the Endoscopy unit at Hamad Medical Corporation (HMC) and at the HMC's Women's Hospital. Interviews followed a guide involving a set of six, four and five questions related to the knowledge, attitude and behaviors towards informed consent. Two previously trained students were present per interview. One student asked the questions and the other took notes. The interviews continued until we achieved saturation of the primary themes. We made sure to have a proper socio-demographic mix of interviewees, in terms of age, gender, nationality, education and perceived socioeconomic status. The interviews were then transcribed and analyzed. Results: We identified three themes in relation to participants' knowledge of signing informed consent forms: (1) that informed consent is meant to remove the hospital's liability and hold the patient responsible in case of adverse events that could happen during the procedure, (2) that informed consent is to inform patients of their procedure, side effects and benefits, and (3) that signing informed consent is a routine requirement before undergoing any procedure. Regarding attitudes, we identified some contradictory adjectives to describe the information found in the current consent: (1) comprehensive, useful, acceptable and necessary versus (2) complicated, unnecessary, unclear and insufficient. After signing consent forms, patients mentioned three types of personal feelings: (1) responsible, satisfied and relieved, (2) scared, anxious and tense, and (3) indifference. Concerning the behavior questions, we identified three reactions when given the consent forms. Patients would: (1) directly sign it, (2) take time to read and ask questions before signing and (3) take time to pray before signing. Finally, concerning family involvement in the process of signing, we found three topics. Family (1) did not participate at all, and was not aware of the procedure, (2) participated in signing instead of the patient and (3) was involved in a discussion before signing, and was either supportive or not. Conclusion: The themes obtained from this qualitative phase are crucial and will be used as a primary source for the questions of a survey which will be distributed among a wider population in the quantitative phase of our project. The topics picked up by the qualitative phase will help us define possible culturally sensitive procedural strategies and in writing forms to obtain and document informed consent. Better informed consent would help improve doctor-patient communication, resulting in better patient care and a more satisfying patient and family experience.