Engelli Çocuğa Sahip Annelerin COVID-19 Salgını Sürecindeki Deneyimleri

Giriş: COVID-19 salgını döneminde, kaynakların sınırlanması ve erişimin güçleşmesi gibi nedenler özel gereksinimli bireyler ve ailelerini salgının oluşturduğu risklere daha açık hale getirmektedir. Özel gereksinimli bireyler ve ailelerinin salgın sürecindeki deneyimlerini, yaşadıkları zorlukları ve ihtiyaçlarını anlamak ve kriz etkilerini değerlendirmek sürece uyum sağlamaları için müdahaleler oluşturmada hayati önem taşımaktadır. Bu çalışmanın amacı özel gereksinimli çocuğa sahip ailelerde bakım yükünü üstlenen annelerin COVID-19 salgını sürecindeki deneyimlerini incelemektir.Yöntem: Çalışmada nitel araştırma yöntemlerinden fenomenolojik yöntem kullanılarak, özel gereksinimli çocukları olan annelerle (n = 14) yarı yapılandırılmış görüşmeler gerçekleştirilmiştir. Veri analizinde Miles ve Huberman modeli takip edilmiş ve sürekli karşılaştırma ve fenomenolojik indirgeme yöntemleri kullanılarak incelenen fenomeni yansıtan kod ve kategoriler ortaya çıkarılmıştır.Bulgular: Çalışmanın sonuçlarına göre, annelerin yaşamlarının zorlukları bu süreçte artmış, salgına dönük önlemler sonucu oluşan kısıtlanma algısı ve hizmetlere erişimin yetersizliği anneler arasında kaygıların yükselmesine neden olmuştur. Özel gereksinimli çocukların ve ailelerinin destek kaynaklarının kısıtlanması ve ihtiyaçlarını kendi kaynakları ile karşılamadaki yetersizlikleri, annelerin kendilerini yorgun ve tükenmiş hissetmelerine yol açmıştır. Yaşadıkları zorlukların yanı sıra anneler bu süreçte aile bireyleriyle verimli vakit geçirebildikleri, dijital kaynakları kullandıkları ve süreç sonunda kendilerini güçlü hissettikleri yönünde görüş bildirmişlerdir.Tartışma: Özel gereksinimli çocuğa sahip anneler arasında görülen kaygı, yetersizlik duygusu, yorgunluk, kısıtlanma gibi zorlayıcı deneyimler, bu annelerin COVID-19 salgınından olumsuz etkilenen kırılgan bireyler arasında yer aldıklarını göstermektedir. Salgın süreci zorlayıcı olsa da anneler zorluklarla başa çıkabilmede direnç kazanmış ve sürece uyum sağlamışlardır.Sonuç ve Öneriler: Gelecekteki olası salgınlar için özel gereksinimli üyesi olan ailelerin deneyimleri temel alınarak bu bireylere yönelik bilgilendirme, savunuculuk, psikososyal danışmanlık, güçlendirme odaklı çalışmalarla birlikte ailede kriz yönetimini kolaylaştıracak hizmetler sunulmalıdır.

Anahtar Kelimeler:

Özel gereksinimli çocuklar, özel gereksinimli çocukların anneleri, COVID-19 salgını, salgın deneyimleri

Experiences of Mothers with Disabled Children During the COVID-19 Pandemic

Introduction: During the COVID-19 pandemic, conditions such as the limitation of resources and the difficulty of access led to disabled individuals and their families to become more vulnerable to the risks posed by the pandemic. Understanding the experiences, difficulties, and needs of individuals with disabilities and their families during the pandemic, as well as evaluating the effects of the crisis, are essential in creating interventions to mitigate these difficulties. This study has aimed to examine the experiences of mothers, who have the burden of care in families with disabled children, during the COVID-19 pandemic.Method: In the study, semi-structured interviews were conducted with mothers of children with disabilities (n = 14) using the phenomenological method, which is one of the qualitative research methods. In the data analysis, Miles and Huberman model was followed, and the codes and categories reflecting the investigated phenomenon were determined by using continuous comparison and phenomenological reduction methods.Findings: According to the results of the study, the difficulties of the mothers' lives increased during the pandemic, and the perception of restrictions resulting from the measures against the pandemic, as well as the inadequacy of access to services, led to increased concern among mothers. The limited support for children with disabilities and their families, as well as their inability to meet their needs with their resources, caused mothers to feel exhausted. In addition to the difficulties they experienced, mothers stated that they had positive experiences as well, since they could spend more productive time with their family members, use digital resources, and feel stronger at the end of the process.Discussion: Compelling experiences such as anxiety, feelings of inadequacy, fatigue, and restraint among mothers with disabled children show that these mothers are among the vulnerable individuals adversely affected by the COVID-19 pandemic. Although the pandemic period was challenging, mothers gained resilience in coping with the difficulties and adapted to the situation.Conclusion and Suggestions: Based on the experiences of families with disabled members for possible future pandemics, services should be provided to facilitate family crisis management, education, advocacy, psychosocial counseling, and empowerment-based studies.

Keywords:

Special needs children, mothers of children with special needs, COVID-19 pandemic, pandemic experiences,

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