Serkan TURAN, Ayfer ÜLGENALP, Hande MEMİŞ, Uluç YİŞ, Aynur AKAY PEKCANLAR

Duchenne/Becker musküler distrofi tanılı olgularda aile işlevselliği ve davranış problemleri: Kesitsel bir çalışma

Amaç: Çocuklarda; Duchenne/Becker Musküler Distrofisi (DBMD) duygusal ve davranışsal problemlerle ve aile fonksiyonlarında ki bozulma ile ilişkilidir. Bu çalışma, aile işlevselliğini ve davranış sorunlarını, DBMD olan olgularda araştırmayı amaçlamaktadır.Yöntemler: Çalışma; Ocak 2019 ve Mart 2019 tarihleri arasında Dokuz Eylül Üniversitesi Tıbbi Genetik ve Çocuk ve Ergen Psikiyatrisi Polikliniği’ne başvuran 28 DBMD tanılı çocuk ve ergen ile 50 sağlıklı kontrol olgusunu içermektedir. Duygulanım Bozuklukları ve Şizofreni Görüşme Çizelgesi-Şimdi ve Yaşam Boyu Şekli-Türkçe (K-SADS-PL) ile araştırmacılar tarafından değerlendirilen katılımcılara; sosyodemografik ve klinik özellikler ile ilgili sorular içeren veri formu, Wechsler Çocuklar İçin Zeka Ölçeği (WISC-R) (sadece DBMD vakaları), Beck Depresyon Ölçeği (BDI), Durum ve Süreklilik Kaygı Envanteri (STAI), Ebeveyn Tutum Değerlendirme Ölçeği (PARI), Çocuk Davranış Kontrol Listesi (CBCL) ve Aile Değerlendirme Ölçeği uygulanmıştır.Bulgular: DBMD'li çocukların anneleri, Beck Depresyon Envanteri ve Durum-Sürekli Kaygı Envanteri ölçeklerinde, kontrol grubundakilere göre endişeli ve depresif durumlarla ilişkili daha yüksek ancak istatistiksel olarak anlamlı olmayan puanlar saptanmıştır (sırasıyla P=0.888, P=0.584 ve P=0.646). DBMD vakaları, Çocuk Davranışları Kontrol Listesinin çoğunda (aktiviteler, çekingen / depresif, somatik şikayetler, vb.) anlamlı olarak daha yüksek puanlar göstermiştir; bu, ailelerin işleyişini ve hastanın yaşam kalitesini etkileyen birçok problem alanına sahip oldukları anlamına gelmektedir (P<0.001).Sonuç: Bu çalışma, DBMD'li çocukları olan ebeveynler için DBMD'nin yaşamları ve aile ilişkileri üzerinde olumsuz bir etkisi olduğunu göstermiştir. Bununla birlikte, daha güçlü sonuçlara ulaşmak için daha büyük örneklem büyüklüğünde daha fazla çalışma yapılması gerekmektedir.

Anahtar Kelimeler:

Kas distrofisi, Çocukluk çağı davranış problemleri, Aile işlevselliği

Family functioning and child behavioral problems with Duchenne/Becker muscular dystrophy: A cross-sectional study

Aim: Duchenne/Becker muscular dystrophy (DBMD) in children is associated with emotional and behavioral problems and impairment at family functioning. The current study aimed to explicate family functioning and child behavioral problems with DBMD.Methods: The study involved 28 child and adolescents with DBMD attending Dokuz Eylul University Medical Genetics and Child and Adolescent Psychiatry Outpatient Clinic from January 2019 to March 2019 and comprised 50 healthy control subjects. The participants who were evaluated with Kiddie-Sads-Present and Lifetime (K-SADS-PL) by blinded professionals completed a data form containing questions regarding sociodemographic and clinical features, Wechsler Intelligence Scale for Children-Revised (WISC-R) (for only DBMD cases), the Beck Depression Scale (BDS), State-Trait Anxiety Inventory (STAI), Parenteral Attitude Research Instrument (PARI), the Child Behavior Checklist (CBCL) and Family Assessment Device. Results: Mothers of the children with DBMD demonstrated higher scores in Beck Depression Inventory and State-Trait Anxiety Inventory scales, which is associated with anxious and depressive states as compared with those from the control group but not statistically significant (P=0.888, P=0.584 and P=0.646, respectively). DBMD cases demonstrated significantly higher scores in most of the Child Behavior Checklist (activities, withdrawn/depressed, somatic complaints etc.), meaning that they have many problem areas affecting family functioning and the quality of life of the patient (P<0.001).Conclusion: This study demonstrated that, for parents who have children with DBMD, DBMD had a negative effect on their lives, and their family relationships. However, further studies with larger sample sizes are required to reach stronger conclusions.

Keywords:

Muscular dystrophy, Child behavioral problems, Family functioning,

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