Oral health and 22q11 deletion syndrome: thoughts and experiences from the parents’ perspectives

Abstract

Parents not only described their children's oral health as important but also hard to gain. Thus, it is important that all patients with disabilities, regardless of whether there is a defined medical diagnosis or not, are identified and well taken care of in the dental care system.

The psychosocial impact of 22q11 deletion syndrome on patients and families: A systematic review

“…Thirteen studies revealed negative and positive emotions experienced amongst families, caregivers, and patients (Bales et al, 2010a; Briegel et al, 2008; Chan et al, 2015; Costain et al, 2012; Goodwin, Alam, et al, 2017; Goodwin & Mccormack, 2017; Goodwin, McCormack, et al, 2017; Hercher & Bruenner, 2008; Karas et al, 2014; Klingberg et al, 2010; Okashah et al, 2015; Phillips et al, 2017; Reilly et al, 2015). Three subthemes were identified: emotions experienced by parents and caregivers, emotional experiences faced by siblings, shared emotional experiences.…”

“…Eight studies highlighted emotional conflicts experienced by families and caregivers of individuals with 22q11DS, such as feelings of loss, grief, and guilt (Bales et al, 2010a; Briegel et al, 2008; Goodwin, Alam, et al, 2017; Goodwin & Mccormack, 2017; Goodwin, McCormack, et al, 2017; Hercher & Bruenner, 2008; Klingberg et al, 2010; Okashah et al, 2015). Parents’ reflections on what life could be like without 22q11DS raised feelings of grief, such as their child losing out on the milestones that a “normal” child is expected to have (Goodwin & Mccormack, 2017; Goodwin, McCormack, et al, 2017).…”

“…Six studies were qualitative in nature (Bales et al, 2010a; Goodwin, Alam, et al, 2017; Goodwin & Mccormack, 2017; Goodwin, McCormack, et al, 2017; Klingberg et al, 2010; Phillips et al, 2017), seven used mixed methods (Butcher et al, 2012; Chan et al, 2015; Cohen et al, 2017; Hercher & Bruenner, 2008; Karas et al, 2014; Martin et al, 2012; Okashah et al, 2015), and two exclusively quantitative papers were included (Briegel et al, 2008; Reilly et al, 2015). Qualitative methods used included interviews, surveys, and questionnaires.…”

“…The 14 included studies were conducted between 2008 and 2017 (Bales et al, 2010a; Briegel et al, 2008; Chan et al, 2015; Cohen, McCartney, & Crampin, 2017; Costain, Chow, Ray, & Bassett, 2012; Goodwin, Alam, et al, 2017; Goodwin & Mccormack, 2017; Goodwin, McCormack, et al, 2017; Hercher & Bruenner, 2008; Karas, Costain, Chow, & Bassett, 2014; Klingberg, Hallberg, & Óskarsdóttir, 2010; Martin et al, 2012; Okashah et al, 2015; Phillips, Goodwin, Johnson, & Campbell, 2017; Reilly et al, 2015), with the majority published between 2016 and 2017 ( n  = 5).…”

“…Six studies focused on experiences of parents and/or caregivers ( n  = 5) (Briegel et al, 2008; Goodwin & Mccormack, 2017; Goodwin, McCormack, et al, 2017; Hercher & Bruenner, 2008; Klingberg et al, 2010; Reilly et al, 2015), two studies focused exclusively on patients ( n  = 2) (Chan et al, 2015; Phillips et al, 2017), and one study focused on sibling (Goodwin, Alam, et al, 2017). Sample sizes ranged from 5 to 158; sample size largely dependent on study methodology.…”