E22 Experiences among parents caring for children with juvenile idiopathic arthritis at a tertiary referral hospital in Kenya

Abstract

Abstract Background Juvenile idiopathic arthritis (JIA) is a highly morbid disease associated with significant rates of preventable permanent damage. The burden and distribution of JIA in African countries vary compared with data across the globe. High-income countries have shown a higher prevalence of JIA compared with low-income countries. Recent studies done in Zambia and Nigeria demonstrated contrasting results in the distributions of the subtypes of JIA within the African continent and those seen in Western countries. Most of these studies were quantitative in nature, looking at health related quality of life within this cohort of patients. Studies done looking at the parental experiences in caring for children for JIA have been reported in high income countries. No studies have been reported within our region to assess the impact of JIA has on parents/guardians caring for children suffering from JIA. Studies from high income countries have shown negative impacts on the social, emotional and financial well-being of guardians caring for children with JIA. We aim to look at impact JIA has on guardians caring for children affected within our context. A few studies in high income countries reported that parental experiences and perceptions play a big role in the long term wellbeing of the child. It still remains unknown the impact JIA might have within our population. Methods This will be a phenomenological type of qualitative study design. 18 potential participants (below 16 years) with a confirmed diagnosis of JIA will be purposively selected from the Kenya pediatric rheumatology registry database (KAPRI). Guardians of patients who meet the inclusion criteria will be scheduled for an introductory meeting on specific days of the week in line with their pediatric rheumatology appointment and in the presence of the primary investigator and the rheumatology consultant. Parental experiences will have been conceptualized using four major indicators: social experience, financial experiences, psychological experience, and medical and treatment-related experiences which impact their overall quality of life. These four concepts have been operationalized using various indicators which were retrieved from literature. The interview guide questionnaire was informed by the conceptual framework which was developed from extensive literature review findings on lived experiences of patients with various health conditions. The concepts in the framework will also serve as the pre-determined themes guiding the deductive thematic data analysis. We shall carry out a deductive thematic data analysis. Hence pre-determined themes extracted from the conceptual framework which was developed from extensive literature review findings on lived experiences of patients will be used in analyzing the data. At the same time, any other new emerging themes will be considered. The transcribed data will be analyzed using the Max for Qualitative Data Analysis (MAXQDA) software program version 2022. Results This project is in its preliminary data collection phase and enrolment of participants is ongoing at the Aga khan University Hospital Nairobi after approval by the Institutional Scientific and Ethical Review Committee (ISERC). Conclusions The results in this study will open avenues for further bigger studies to help promote patient centered care. The results in this study will depict the impact of JIA within our context, as studies done outside of Africa cannot be extrapolated because of the differences in social, economic, and cultural standards and capabilities of practice. Currently, the paucity of data from Africa makes it difficult to predict the burden and impact that JIA pauses on families. This study being a qualitative design, will give an in-depth view on the impact the disease has on the families compared with quantitative studies looking at the quality of life which scarce and despite their values, have limitations such as the inability to include social and cultural aspects and emotional aspects of children's lives and their families and the meaning of life.