An Investigation of Barriers and Facilitators of Adherence in Relation to Amendable Risk Factors in the Primary Prevention of Non-Syndromic Orofacial Cleft

  • Dalia Abubaker Bajabir

Student thesis: Doctoral ThesisDoctor of Philosophy


Background: Orofacial cleft is one of the most common birth defects with aesthetic, functional, and psychological consequences for the patient. Apart from the role of genetics in the aetiology of cleft lip/palate, environmental intervention has a crucial role through both unmodifiable (e.g., race/ethnicity, sex, age) and modifiable factors. These environmental factors can interfere in the preconception period as well as the first trimester of pregnancy. Identification of modifiable risk factors related to orofacial clefts provides a significant opportunity for primary prevention. Modifiable risk factors include social (including consanguinity) and behavioural factors such as lifestyle, medications, infections, stress, vitamin deficiency, substance intoxication, exposure to environmental teratogens and maternal obesity, which could alter the intrauterine environment and affect embryo development. Several studies indicate that modifying these numerous risk factors that have been identified, can be an effective preventative measure.

Aims: To explore the experiences and views of women at reproductive age in modifying their unfavourable behaviours specially those related to orofacial cleft, to investigate their awareness of these issues, as well as the barriers and facilitators they experience in adopting healthy lifestyle in relation to reproductive health in general, and cleft lip and palate specifically. This will provide a theoretical foundation for recommendations and future research.

Methods: The thesis comprises three main phases:

(1) A literature review to set the study context.

(2) A systematic review and meta-synthesis, using thematic synthesis.

(3) An exploratory qualitative one-to-one interview study with women of childbearing age, underpinned by grounded theory.

Findings: In the systematic review, 4797 papers were identified and screened. Of these, 14 studies were included in the meta-synthesis. The main findings of the meta-synthesis included three areas; the frame of health information, barriers and facilitators for women in adopting healthy lifestyle in the periconceptional period and women’s knowledge and awareness about healthy and risky behaviours. In the primary qualitative study, 12 women of reproductive age with their youngest child aged 18 months or below, with or without orofacial clefts, were interviewed. The interview study’s findings include barriers and facilitators for Saudi women in adopting healthy lifestyle and modifying behavioural and lifestyle risk factors in relation to orofacial cleft in the periconceptional period, women’s perception of pregnancy planning, the impact of the culture and norms on their lifestyle including modifying unfavourable behaviour and the role of healthcare providers. From the triangulation of the meta-synthesis and interview study findings, women’s awareness of preconception care and prenatal care was found to be low to moderate, especially regarding physical activity, body weight management before and during pregnancy and family planning. They also lacked the ability to connect their own health and lifestyle practices to the health of the foetus. Multiple barriers and facilitators were identified in relation to women adopting a healthy lifestyle in the periconceptional period, with culture and social life playing a significant role.

Conclusion: This study has addressed a gap in the literature by providing a condensed framework of women’s voices from different cultural perspectives, religions and policy system backgrounds. This was achieved through the conduction of meta-synthesis and interview study to identify amendable risk factors that can be modified by health coaching programmes and public health strategies to reduce the incidence of orofacial cleft. These elements should be taken into consideration especially when improving healthcare delivery, as these women are the recipients of the service and should therefore be included as a significant influence on its structure. Participants of the interview study provided lived experience of accessing and using the service and therefore provide valuable insights about how content and delivery could be best improved. This study provides an important contribution by presenting a solid theoretical foundation and knowledge to the body of literature that has the potential to influence preventive strategies through behaviour change, which will act as a guide for those delivering women-centred healthcare to improve reproductive health. It acknowledges women’s beliefs and values and provides recommendations for further quantitative and qualitative research. Identifying influential factors to behaviour modification at the personal level is the preliminarily requirement that is essential for designing and implementing a longitudinal health coaching agenda that addresses behaviour change modalities.
Date of Award2022
Original languageEnglish
SupervisorPeter Mossey (Supervisor), Nicola Innes (Supervisor) & Steve MacGillivray (Supervisor)

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