The Self-Concept, Family Functioning, Psychological and Emotional Symptoms, in Children and Adolescents with Neurofibromatosis Type 1

Year 2024, Issue: Early Access

Gülen Güler Aksu , Özlem Tezol , Meryem Özlem Kütük , Ozan Kayar , Ali Evren Tufan , İrem Kargın , Pelin Dağ , İsmail Dorukhan Erk , Fevziye Toros

https://doi.org/10.18678/dtfd.1509447

Abstract

Aim: This study aimed to examine the self-concept and related psychological factors in children and adolescents with neurofibromatosis type 1 (NF1).
Material and Methods: A total of 71 participants (35 patients and 36 controls) were included in this study. As measurement tools the Piers-Harris children’s self-concept scale (PHSCS), family assessment device (FAD), Turgay DSM-IV-based screening and rating scale for disruptive behavior disorders (T-DSM-IV-S), children's depression inventory (CDI), Beck depression inventory (BDI), state-trait anxiety inventory (STAI), children’s sleep habits questionnaire (CSHQ), and autism spectrum quotient-adolescent (AQ-adolescent) were used.
Results: NF1 patients had lower intellectual functioning/academic achievement (p=0.002) and popularity/social appreciation (p<0.001) subscale scores in addition to total self-esteem (p=0.002) scores compared to the control group. Inattentiveness (p=0.024), state anxiety (p=0.028), and trait anxiety (p=0.012) symptoms were more common in these patients, and autistic features were more conspicuous in adolescents (p<0.001). Mother’s depression (p=0.045), and state and trait anxiety (p=0.016, and p=0.006, respectively) levels were higher in the NF1 group. Depression, state anxiety, and hyperactivity were found predictors of self-concept in children and adolescents with NF1 (p<0.001, p=0.036, and p=0.016, respectively).
Conclusion: Turkish children and adolescents with NF1 face substantial challenges related to their self-concept and psychological health, particularly in academic and social domains, compared to their peers. It seems important to be aware of poor self-concept and related psychological factors in NF patients early in life and to develop intervention programs to address this issue.

Keywords

Self-concept, anxiety, neurofibromatosis 1

Thanks

One of the authors of our article, Prof. Dr. Elvan Çağlar Çıtak passed away shortly after the completion of being written the article. We are grateful to him for his precious contribution to the article.

Nörofibromatozis Tip 1 Tanılı Çocuk ve Ergenlerde Benlik Kavramı, Aile İşlevleri, Ruhsal ve Emosyonel Semptomlar

Abstract

Amaç: Bu çalışma, nörofibromatozis tip 1 (NF1) tanısı olan çocuk ve ergenlerde benlik kavramını ve ilişkili psikolojik faktörleri incelemeyi amaçlamaktadır.
Gereç ve Yöntemler: Bu çalışmaya toplam 71 katılımcı (35 hasta ve 36 kontrol) dahil edildi. Ölçme aracı olarak Piers-Harris çocuklar için benlik kavramı ölçeği (PHBKÖ), aile değerlendirme ölçeği (ADÖ), Turgay yıkıcı davranım bozuklukları için DSM-IV’e dayalı tarama ve değerlendirme ölçeği (YDB- TDÖ), çocuklar için depresyon ölçeği (ÇDÖ), Beck depresyon envanteri (BDE), durumluk-sürekli kaygı envanteri (DSKE), çocuk uyku alışkanlıkları anketi (ÇUAA) ve otizm spektrum anketi-ergen formu (OSA-ergen) uygulandı.
Bulgular: NF1 hastaları, kontrol grubuna kıyasla daha düşük toplam benlik kavramı puanlarının (p=0,002) yanı sıra daha düşük zihinsel işlevsellik/akademik başarı (p=0,002) ve popülerlik/sosyal beğeni (p<0,001) alt ölçek puanlarına sahipti. Dikkat eksikliği (p=0,024), durumluk anksiyete (p=0,028) ve sürekli anksiyete (p=0,012) semptomları bu hastalarda daha sıktı ve ergenlerde otistik özellikler (p<0,001) daha belirgindi. Annelerin depresyon (p=0,045) ve durumluk ve sürekli kaygı (sırasıyla p=0,016 ve p=0,006) düzeyleri NF1 grubunda daha yüksekti. NF1 tanılı çocuk ve ergenlerde depresyon, durumluk anksiyete ve hiperaktivite, benlik kavramının yordayıcıları olduğunu gösterdi (sırasıyla, p<0,001, p=0,036 ve p=0,016).
Sonuç: NF1 tanısı olan Türk çocuk ve ergenler, akranlarına kıyasla, özellikle akademik ve sosyal alanlarda olmak üzere benlik kavramları ve psikolojik sağlıkları ile ilgili önemli zorluklarla karşılaşmaktadır. NF hastalarındaki zayıf benlik kavramının ve ilişkili psikolojik faktörlerin yaşamın erken dönemlerinde farkında olmak ve buna yönelik müdahale programları geliştirmek önemli görünmektedir.

Keywords

Benlik kavramı, anksiyete, nörofibromatozis 1

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