Relationship between high trait anxiety in 22q11.2 deletion syndrome and the difficulties in medical, welfare, and educational services

Nakajima, Naomasa; Tanaka, Masahide; Kanehara, Akiko; Morishima, Ryo; Kumakura, Yousuke; Ohkouchi, Noriko; Hamada, Junko; Ogawa, Tomoko; Tamune, Hidetaka; Nakahara, Mutsumi; Mori, Shunsuke; Ichihashi, Kayo; Jinde, Seiichiro; Kano, Yukiko; Sakamoto, Ichiro; Tanaka, Kyoko; Hirata, Yoichiro; Ohashi, Hirofumi; Shinohara, Tokuko; Kasai, Kiyoto

doi:10.1002/pcn5.80

Cited by 2 publications

(2 citation statements)

References 22 publications

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“…The study participants were parents of individuals with 22q11.2DS. Detailed descriptions of the demographic and clinical characteristics of the individuals with 22q11.2DS and their parents are available in our previous reports 8–10 …”

Section: Methodsmentioning

confidence: 99%

Physical and psychosocial factors associated with fatigue in individuals with 22q11.2 deletion syndrome

Takahashi,

Sawai,

Uno

et al. 2024

PCN Reports

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AimsThis study investigated fatigue in individuals with 22q11.2 deletion syndrome (22q11.2DS), identifying both physical and psychosocial factors.MethodsWe conducted a cross‐sectional web‐based survey of 125 parents of individuals with 22q11.2DS. Significant factors of fatigue were identified using bivariate analysis and forward stepwise binary logistic regression.ResultsOverall, 34% (42 of 125) of the participants reported fatigue. Bivariate analysis identified 37 variables linked with fatigue, of which 11 were significant in multivariable analysis: older age (odds ratio [OR] = 1.28, 95% confidence interval [CI] [1.07, 1.53], P = 0.008), history of auditory hypersensitivity (OR = 36.4, 95% CI [4.08, 323.8], P = 0.001), delayed motor development (OR = 10.4, 95% CI [1.78, 61.0], P = 0.009), difficulty participating in events (OR = 33.5, 95% CI [1.1, 1068.2], P = 0.047), inability to join groups (OR = 47.9, 95% CI [4.8, 481.7], P = 0.001), concerns about marriage (OR = 17.0, 95% CI [2.6, 112.7], P = 0.003), inability to attend facilities (OR = 20.4, 95% CI [1.4, 308.0], P = 0.029), poor coordination when changing medical facilities (OR = < 0.010, 95% CI [0, 0.014], P = 0.002), lack of understanding about the individual's condition (OR = 0.010, 95% CI [0, 0.502], P = 0.021), and requirement of visiting multiple departments within the hospital (OR = 46.6, 95% CI [1.9, 1124.6], P = 0.018).ConclusionsFatigue in 22q11.2DS is multifaceted, necessitating holistic fatigue management.

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Section: Methodsmentioning

confidence: 99%

Physical and psychosocial factors associated with fatigue in individuals with 22q11.2 deletion syndrome

Takahashi,

Sawai,

Uno

et al. 2024

PCN Reports

Self Cite

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“…While this reflects the nature of public schooling, whereby early education classes are smaller and well-resourced in comparison to larger classes in primary school settings, parents found that the needs of their children were not always met, and educators were less likely to learn about their child. The importance of educators knowledge about 22q11.2DS children is paramount and empirically supported by a recent study finding that communicating with teachers in educational settings was difficult for caregivers, and that children in educational settings were likely to demonstrate high social anxiety that was not understood by teachers [36]. Herein lies the importance of quality transition programs for children who have disabilities where the progression from early learning centres to primary school education requires clear communication betw een educators, full collaboration of all education personnel involved, and the transparent sharing of child knowledge by all key stakeholders regarding educational and psychosocial strengths and challenges [37].…”

Section: Impact Of Educational Environmentmentioning

confidence: 99%

Exploring Education for Children with 22q11.2 Deletion Syndrome: A Qualitative Study of Mothers Perspectives

Roche,

Flynn,

Campbell

2024

OBM Genet

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22q11.2 deletion syndrome (22q11.2DS) is a complex and widely variable genetic syndrome involving multisystem physical health problems, significant cognitive and psychosocial challenges, all of which may impact upon learning and academic achievement. In the current study, we explored mothers’ perceptions of their child’s learning within early and primary educational contexts. We conducted 3 online focus groups and 1 online semi-structured interview with a total of 9 mothers of children diagnosed with 22q11.2DS. Mothers were included if their child had a genetic diagnosis of 22q11.2DS and was aged from 3 to 12 years old. The mothers were asked a series of open-ended questions to explore the educational experiences of their child. We adopted an inductive approach to our data analysis and conducted a reflexive thematic analysis resulting in the emergence of 4 major themes (1.) The impact of 22q11.2DS on a child’s learning; (2.) The impact of adaptive behaviour skills on their child’s learning; (3.) The level of support available within the educational setting and; (4.) Mothers’ perceptions about their child’s learning. From these themes, the following 12 sub themes were identified: absences affecting learning; the development of specific learning behaviours; the impact of a 22q11.2 DS diagnosis on their child’s self-perception; toileting, motor issues; communication; sleep; school and teacher support and the presence (or absence) of therapists. Finally, the mothers’ confidence about their child’s learning; mothers’ concerns and comparisons of their child; and mothers’ apprehension about their child’s future were all identified as sub-themes. Children with 22q11.2DS require increased and specific psychosocial support to allow them greater opportunities to fully participate in their learning environments. Mothers perceived the level of support their child received was greater during pre-school compared to that received at primary school. It was clear that a greater understanding of the needs of children with 22q11.2DS, by educators, was needed. Implications for tailored support for school-based learning and educational transitions for young children with 22q11.2DS are discussed.

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Relationship between high trait anxiety in 22q11.2 deletion syndrome and the difficulties in medical, welfare, and educational services

Cited by 2 publications

References 22 publications

Physical and psychosocial factors associated with fatigue in individuals with 22q11.2 deletion syndrome

Physical and psychosocial factors associated with fatigue in individuals with 22q11.2 deletion syndrome

Exploring Education for Children with 22q11.2 Deletion Syndrome: A Qualitative Study of Mothers Perspectives

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