Parents’ experiences of stepping back in the decision-making process during transition in the cleft pathway

Background Cleft lip and/or palate (CL/P) is the most common congenital craniofacial condition that can cause physical health complications, psychological difficulties and challenges in social interactions. Parents of children with CL/P are also affected as they face challenges of demanding care needs and long-term treatment. It is important to understand parents’ experiences and their needs to support them when caring for their children. Method First, a systematic review was conducted to appraise and synthesise evidence of parental attachment in the early years of lives of children with CL/P and subsequent parental. Second, an empirical study explored parental experiences of a decision-making process about an elective, orthognathic surgery when the responsibility of the decision moves from parents to the young person affected. Results The systematic review found that after some changes during the first year, there are no differences in attachment between mothers of children with and without cleft at five years. Findings on parenting were mixed but the majority highlighted either no differences in comparison to parents of healthy children or fostering autonomy despite worries about children’s health and physical safety. The empirical study identified three main themes, ‘”Our” journey’, ‘Stepping back’ and ‘Helping with the bigger picture’, reflecting the changing role in responsibility for decision-making. Conclusions The thesis focuses on two key time periods identified in literature, the start and the end of the cleft journey, to better understand parental needs. Parents develop attachment to their child while adjusting to their needs and undergoing initial surgeries during the first year. Parents’ experiences of stepping back in the decision-making process during transition in the cleft pathway Another crucial period is the transition of decision-making regarding the orthognathic surgery when parents are expected to hand over responsibility to their adolescent child. The thesis highlights complexities and potential key factors impacting on parental experience, i.e., the age of the young people and parenting styles