EXPLORING THE ROLE OF RELIGION/SPIRITUALITY ON THE LIVED EXPERIENCE OF SAUDI PATIENTS WITH LONG QT SYNDROME: PATIENTS’ AND HEALTH PROFESSIONALS’ PERSPECTIVES

UoM administered thesis: Phd

Abstract

Thesis Abstract Background: A small number of previous studies have identified the important role played by religion/spirituality on the lived experience of Muslim patients with genetic disorders; those have focused on patients with severe genetic disorders where mental illness and dysmorphic features were components of the disorder. However, no studies were identified investigating the interplay between patients’ and health professional’s religion/spirituality during counselling sessions in the context of Islam. As the growing in the field of genetic disorders in Saudi Arabia this led to the increase of diagnosing patients with many different genetic diseases, among those are patients with LQTS. The current study therefore fills an important gap in the literature by exploring the role of Islam in the lived experience of Saudi patients with Long QT syndrome from the perspectives of both patients and health professionals. The current study also examines the face validity and utility of two subscales designed specifically to measure the religious coping strategies of Muslims, and which inform research concerning the use of such strategies. Methods: Study 1 employed semi-structured interviews to explore the role of Islam in patients’ perceptions of the cause of diagnosis, coping strategies and medically related decisions. The participants were recruited from two cardio-genetic centres in Saudi Arabia and were investigated via an interpretative phenomenological analysis. Study 2 utilised semi-structured interviews to explore the experiences of health professionals regarding the role played by patients’ religion/spirituality in coping and medically related decisions. The study also explored the impact of health professionals’ own religion/spirituality on the counselling they provided. The health professionals were recruited from the same cardio-genetic centres, with the interviews being analysed via thematic analysis. Study 3 used two-phased mixed methods to examine the face validity of two subscales of the Psychological Measure of Islamic Religiousness Scale; (1) the Islamic Positive Religious Coping and Identification subscale and (2) the Punishing Allah Reappraisal subscale. These were selected because they were related to the main aim of the research project. The participants were undergraduate and postgraduate Muslim students from various backgrounds; recruited from a single university in the UK. The quantitative phase collected participants’ responses (n=101) using an on-line version of the subscales; data were analysed using an SPSS package. The qualitative phase employed think-aloud interviews to explore participants’ opinions of the utility of the subscales; interviews were analysed via thematic analysis. Results: The analysis of the interviews with thirteen patients with (or who were carriers of) Long QT syndrome and twelve health professionals (clinical geneticists, genetics counsellors, cardiologists, molecular geneticists and patient coordinators) demonstrated that religion played a significant role in maintaining a sense of wellbeing in the lived experience of such patients. From patients’ and health professionals’ perspectives, the two main factors influencing perception regarding the cause of the diagnosis, coping and decision-making were the idiosyncratic interpretations of religious beliefs and rulings, and the availability (and accurate understanding) of medical information. Both, health professionals and participants in study 3 found using religious assessment measuring scale as not widely useful. Think-aloud interviews with twenty-four students raised concerns regarding the negative impact (in the form of strengthening false beliefs) of using the investigated subscales. Conclusion: This research provided evidence that providing patients with clear medical information could alter their perception regarding the cause of the diagnosis, which could contribute to better patients’ outcome. The findings from the think-aloud interviews raised a number of concerns regarding the negative impact of the use of questionnaire pertaining to religious coping mechanisms on participants. This research identified several implications that have the potential to inform the practice of genetic counselling in both Saudi Arabia and amongst the wider Islamic community.

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Original languageEnglish
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Award date1 Aug 2020