“It Doesn't All Just Stop at 18”: Psychological Adjustment and Support Needs of Adults Born with Cleft Lip and/or Palate

Abstract

Adults with CL/P may require psychological support, information about the heritability of cleft, signposting and referrals from nonspecialists, support regarding further treatment, and opportunities to take part in research and activities. New issues arising in adulthood, such as entering the workplace, forming long-term relationships, and starting a family, may warrant both further investigation and additional support. Further work is needed to identify the factors that contribute to psychological distress and resilience, as well as the timing of particular points of risk and opportunity for personal growth.

Psychosocial acceptance of cleft patients: has something changed?

“…Cleft patients have reported that they have been teased because of their facial anomaly [10][11][12]. In contrast, a recent study found that adults born with a cleft do not report a relevant effect of their facial malformation on social and romantic relationships [13].…”

Treatment Experiences of Individuals Born with Cleft Lip and/or Palate in the UK

“…First, the participant was invited to tell their story of living with CLP. Second, the topic guide was used to furHowever, despite access to this multidisciplinary approach to treatment individuals born with CLP may face ongoing issues in adulthood that impact on self-confidence, inter-personal relationships, and achievement in education and employment [8][9][10][11]. The ongoing impact of living with CLP may, in part, be a function of dissatisfaction with treatment or unmet aesthetic or functional needs.…”

“…However, one recent qualitative study with 52 adults born with CLP found that some participants questioned the value and necessity of ongoing treatment. They suggested that decision-making was influenced by other peoples' opinions about their appearance and function and consequently led to the exacerbation of confusion and distress [8]. Furthermore, individuals born with CLP may also experience positive psychological growth and wellbeing.…”

“…It has been suggested that re-engaging with treatment as an adult can evoke a strong emotional reaction and the need for subsequent psychological intervention [8]. However, there was also little data relating to the availability of psychological support for individuals considering re-engagement with specialist cleft treatment services.…”

“…Despite disparity in commissioning of cleft services [22] the present data suggests there is a need for continued access to psychological services both pre-and post-intervention as this is one service that is currently overlooked. Thus, in addition to signposting and referrals from non-specialists, individuals born with CLP may also require psychological support when re-entering cleft treatment services [8].…”