Psychological outcomes amongst cleft patients and their families
[Summary] ((Turner, S. R. et al. (1997) Psychological outcomes amongst cleft patients and their families. British Journal of Plastic Surgery. 50: 1-9))
This study was to determine the psychological status of a sample of cleft lip and palate patients and their parents, and their satisfaction with cleft treatment. Carried out principally in the south-east of England, 112 patients and 130 parents were interviewed, and the results were received for publication in April 1996. The study was carried out over a one year period by personnel from the University of Bristol Dental School and the University of the West of England. The findings were published in the British Journal of Plastic Surgery (1997), 50, pp.1-9. The authors of the report were S. R. Turner, P. W. N. Thomas, T. Dowell, N. Rumsey and J. R. Sandy.
The main findings;
- 73% of 15- and 20-year olds felt their self-confidence had been very much affected as a result of their cleft (91% among 20-year olds).
- 60% of the interviewed patients were teased about speech or cleft related features (77% of 15-year olds). According to the children features directly related to the cleft were the focus of teasing in 96% of cases.
- 25% of 10-year olds who had been teased said teasing worried them a lot.
- 25% of 10-year olds who had been teased experienced frequent teasing.
- More than one person usually instigated the teasing and often siblings were the leaders.
- The lip, nose and speech were features that patients were most frequently teased about.
- Teasing often occurred at specific turning points in patients’ lives such as starting in a new school, following surgical revisions or after placement of orthodontic appliances.
- Parents were not always aware that their child had been teased and, where they were, incorrectly suggested in 62% of case that features unrelated to the cleft were the focus.
- None of the subjects interviewed had received help directly from their cleft team for dealing with teasing.
- 23% of 15-year olds felt excluded from treatment planning decisions.
- There was a high level of overall satisfaction with cleft care.
- Differences between parents’ and their childs’ satisfaction ratings for cleft related features were not statistically significant except with regards to 15-year olds in relation to lip and teeth.
- The findings support the view that parents of 15-year olds may underestimate the influence of the cleft on their child’s psychosocial adjustment.
- 15% of parents felt that there was lower self-confidence due to the cleft.
- 100% of 15- and 20-year olds reported experiencing problems initiating conversations with strangers and (for 20-year olds) during job interviews. These subjects also felt self-conscious about their appearance.
- 26% of patients found it difficult to talk about their concerns with their specialists, most notably the younger patients.
- 32% of parents felt it would be helpful for their children to talk about emotional issues with someone from the cleft team.
- Dissatisfaction with cleft care, though low, usually surrounded poor comunication between specialists and parents about the exact plans for surgical procedures and orthodontic treatment.
The study demonstrated the importance of identifying ‘psychological outcome’ as well as ‘clinical outcome’ in order to improve rehabilitation for cleft lip and palate patients. It concluded that there was a clear need for a psychological assessment to be routinely incorporated into existing cleft care programmes.
It also showed that parents of 15-year olds may underestimate the influence of the cleft on their child’s psychological adjustment. It recommended that patients’ views should be sought independently of their parents’ views as no agreement was found within the group for perceived satisfaction with clinical outcome.