Exploring the Experiences of Fathers of Children with a Visible Facial Difference

This study examined the experiences of fathers of children with a congenital
visible facial difference (CVFD), focussing on cleft lip with/without palate (CLP).
The face plays a central role in self-concept and social existence for humans and
holds vast cultural significance. However, research has been slow to go beyond
individual and address the significant wider impacts on the family. Fathers have
been particularly neglected. This is surprising given the wealth of evidence
regarding the important direct and indirect influences fathers have on child
development.
This study aimed to explore how men experience fatherhood in relation to having
a child with CLP, their perceived roles within the family and their experiences of
support. The study employed a qualitative methodology. Participants were
recruited via a national charity and via Twitter. Individual, semi-structured
interviews were conducted with eight fathers of children (under the age of ten)
with CLP. The data were analysed using Interpretative Phenomenological
Analysis, generating three super-ordinate themes: ‘Loss of the perfect child’; ‘The
power of ‘normality’; and ‘The expectations and roles of fathers’. Participants
faced challenges in managing intense and conflicting emotions, with societal and
personal conceptualisations of difference having a significant influence. They
emphasised their roles as protector and supporter, highlighting the implications of
successfully fulfilling these or not. Feeling excluded, insignificant and undersupported
were prevalent issues. Support was derived from partners, and selfmanagement
strategies (e.g. avoidance, focussing on practicalities) were
identified. Unexpected (mainly positive) outcomes of CLP were also
acknowledged.
The findings are discussed in relation to the literature on the lived experiences of
fathers of children with CLP, other CVFDs and other conditions where relevant.
Implications for future research and clinical practice are considered, e.g. taking
an actively inclusive approach with fathers, and offering opportunities to speak
with a psychologist away from the multidisciplinary team spotlight.