Investigating the Information Needs of Adults Patients with Congenital Heart Disease: A Qualitative Study

Considering the progress made in the field of diagnosis and treatment of heart diseases, one of the heart diseases that has a high prevalence today is congenital heart disease. These people have their own special needs because they are getting older with medical treatments. Various studies have shown that at least 50% of patients with heart disease do not take the treatment recommendations made by the treatment staff seriously and do not follow them, which can cause complications or re-hospitalization. One of the important things to prevent this problem is to raise awareness and meet the information needs of patients about possible complications. Hence, the purpose of this study is to identify and categorize the information needs of adults suffering from one of the types of congenital heart disease.

This study was conducted with nineteen patients with congenital heart disease in the first six months of 2023, using conventional qualitative content analysis (Granheim method). The participants were selected from the referrals to the specialized clinic of congenital heart diseases of Kerman University of Medical Sciences. In the interview sessions, the interviewer explained about the audio recording and obtained permission to conduct the interview. Each interview was implemented verbatim after the end. The main codes were extracted by carefully reading the text of the interviews and the necessary categories were made. Lincoln and Goba's four criteria including acceptability, transferability, reliability, and confirmability were used to ensure the robustness of qualitative data. To analyze the data, the conventional content analysis approach with Granheim and Lundman's approach was used. For this purpose, the following steps were .taken to analyze the data: a. Implementation. 2. Study the general text. 3. Extraction of primary codes. 4. Identification of subclasses. 5. Identify the hidden content in the data.

Nineteen patients were interviewed in this study. The age range of the patients was between 18 and 48 years, and ten of the study participants were female and nine were male. Analysis of the content of the interviews led to the identification of 3 main topics including information needs related to the disease, information needs to be related to personal life, and information needs to be related to social life, and 14 sub-topics including how to control the symptoms of the disease, when to see a doctor, drug interactions, and necessary measures for dentistry, performing non-cardiac surgeries, type of diet, smoking and drug use, driving, using beauty services such as body tattoos, finding a suitable job, getting married and having children and the possibility of transmitting the disease to children, marital relationship, participating in competitions, sports and contraceptive methods were done.

Considering the increase in the number of adult patients with congenital heart disease on the one hand and the awareness of important information needs, it is necessary to know the different needs of these patients to better provide different sources of access to this information to the patients.