Patient and Parental Perception of Alveolar Bone Grafting Surgery in Children with Unilateral Cleft Lip and Palate: A Qualitative Study

Abstract

Aims: This study aimed to evaluate and understand patients' and parents' experience of alveolar bone grafting surgery and to gather patient and parental feedback on existing information resources related to alveolar bone grafting surgery. Methods: A descriptive, qualitative study was conducted involving a purposive sample of children affected by unilateral cleft lip and palate and parents of affected children, who had undergone alveolar bone grafting surgery. Two topic guides were developed and in-depth, semi-structured interviews were carried out over the telephone. The interviews were audio-recorded with a dictaphone and transcribed verbatim. A thematic analysis approach was carried out for data analysis using MAXQDA software. Results and Discussion: Following data analysis, six main themes were identified: the life course of the condition, the perception of treatment, the experience of treatment, communication and information seeking, the impact of treatment and coping mechanisms. There was a large amount of positive feedback and high satisfaction with the care that patients had received and their experience of treatment. The importance of the patient-clinician relationship was evident throughout. Parents relied heavily on the information they received verbally at the multidisciplinary clinics and tended to avoid doing their own research online, for fear of what they may read having unreliable content. Negative feedback related to the busy nature of the clinics and the long waits to be seen, as well as some children feeling overwhelmed by the number of clinicians in the room at the multidisciplinary clinics. However, parents did acknowledge, and were appreciative of, the considerable expertise in the room at these clinics. For many parents and children, the significant discomfort and mobility issues from the donor site post-surgery was unanticipated, and a consequence for which they felt unprepared. The impact of cleft on parents was most significant psychologically at diagnosis and during the initial surgeries, and their ability to cope and rationalize their fears for their child seemed to improve drastically over time. ABG and pre-surgical orthodontics caused considerable stress and anxiety in patients. Familiarity with, and trust in the cleft care team were significant in reducing their anxiety. Acknowledging other strengths of the child, putting the condition in perspective and support of family and the cleft community, emerged as means of coping with the condition. Conclusions: Parents were better able to cope with their child's treatments and surgeries at the alveolar bone grafting stage of treatment but children find the MDT clinic daunting and were anxious prior to their surgery. Trust in and familiarity with the clinicians and care team were important factors in reducing their anxiety prior to surgery. Parents felt unprepared for the discomfort and mobility issues of their child's hip following surgery and expressed a desire to be better prepared for this element of the surgical experience.