Children’s experiences of participation in the cleft lip and palate care pathway

Abstract

The research provides an insight into treatment decisions, and how young people, their families, and clinicians interact to arrive at these. Findings provide further evidence to support the important contribution young patients can make in their own treatment choices.

Psychological adjustment to cleft lip and/or palate: A narrative review of the literature

“…A number of other studies described reasons for treatment refusal, which included patients' reports of feeling satisfied with treatment, having positive self-perceptions, being able to cope, believing no more could be done, a fear of the treatment failing or being tired of treatment Hall et al, 2012;Alansari et al, 2013;. Patients were more likely to refuse treatment, or to find the decision-making process more difficult if the procedure was for cosmetic reasons only Hall, Gibson, James & Rodd, 2012). Some patients had also declined treatment due to a fear of the treatment failing (Hall et al, 2012;.…”

“…Patients were more likely to refuse treatment, or to find the decision-making process more difficult if the procedure was for cosmetic reasons only Hall, Gibson, James & Rodd, 2012). Some patients had also declined treatment due to a fear of the treatment failing (Hall et al, 2012;.…”

“…Experiences of treatment during childhood shaped patients' decision process when considering optional surgeries offered at a later stage (Alansari et al, 2013;Stock, Feragen et al, in press). In a sample of 8-17-yearolds, young people were found to adopt their own measures to improve appearance, including wearing make-up and nice clothes (Hall et al, 2012). Some only took photographs from their 'best side' and some consciously smiled more to make their cleft less noticeable (Hall et al, 2012).…”

“…Eight studies described patients as feeling nervous, intimidated by and/or frightened of treatment and clinic appointments (Noor & Musa, 2007;Luoto, Lahti, Nevanpera, Tolvanen & Locker, 2008;Bos & Prahl, 2011;Vogels, Aartman & Veerkamp, 2011;Hall et al, 2012;Dogan, Serin, Uzel & Seydaoglu, 2013;Krikken et al, 2015;Tierney et al, 2015), while others reported that treatment could be burdensome (Chetpakdeechit et al, 2009;Alansari et al, 2013). Females reported more concern about treatment than males in two studies (Luoto et al, 2008;Bos & Prahl, 2011).…”

“…Treatment anxiety was highest in children aged four to six years (Vogels et al, 2011), but was generally found to reduce with age and with previous experience of treatment (Luoto et al, 2008;Dogan et al, 2013;Krikken et al, 2015). Some patients felt it was difficult for them to discuss concerns with specialists, while others reported feeling more confident in expressing their views (Noor & Musa, 2007;Hall et al, 2012). Patients raised concerns about feeling pressured to comply with treatment recommendations and/or having a lack of influence over treatment decisions (Noor & Musa, 2007;Hall et al, 2012;.…”