Assessing the Family Requirements of Families with Disabled Children

Yıl 2025, Cilt: 12 Sayı: 1, 160 - 168, 26.03.2025

Müjde Kerkez , Canan Birimoglu Okuyan

https://doi.org/10.34087/cbusbed.1516638

Öz

Aim; The objective of this investigation is to ascertain the familial requirements of families with disabled children.
Method; The descriptive study's sample consisted of 57 families of disabled individuals who were registered at a disability centre. The Family Needs Scale and the sociodemographic characteristics form were employed to acquire research data in person between March and June 2024. The research data was assessed using descriptive and descriptive analyses.
Results; In the study, 86.0% of the parents were female, and 66.7% of the parents had more than one child. The most frequently identified service requirements of families were as follows: obtaining information (86.0%), social services (82.6%), economic needs (78.9%), and family and social support needs (68.4%). Additionally, it was determined that families require the most critical social and financial support, as well as professional support from healthcare professionals
Conclusion; Families of children with special needs require access to information, services, and resources that pertain to their children's maladies. Additionally, they continue to harbour personal and social apprehensions regarding the care of a disabled child.

Keywords: Family Needs, Parents, Children with Special Needs.

Anahtar Kelimeler

Family Needs, Parents, Children with Special Needs.

Engelli Çocuğa Sahip Ailelerin Aile İhtiyaçlarının Belirlenmesi

Öz

Giriş ve Amaç: Bu araştırmanın amacı engelli çocuğa sahip ailelerin ailesel ihtiyaçlarını tespit etmektir.
Gereç ve Yöntemler: Tanımlayıcı tipte yapılan çalışmanın örneklemini bir engelli merkezine kayıtlı engelli bireylerin aileleri oluşturdu (n=57). Araştırma verileri Mart-Haziran 2024 tarihleri arasında sosyodemografik özellikler formu ve Aile İhtiyaçları Ölçeği aracılığıyla yüz yüze toplandı. Araştırma verilerinin değerlendirilmesinde tanımlayıcı ve betimsel analizlerden yararlanıldı.
Bulgular: Çalışmada ebeveynlerin %86.0’ı kadın ve %66.7’si birden fazla çocuğa sahipti. Ailelerin en sık belirlenen hizmet gereksinimleri bilgi edinme (%86.0), toplumsal hizmetler (%82.6), ekonomik ihtiyaçlar (%78.9) ve aile ve sosyal destek ihtiyaçları (%68.4) olarak belirlendi. Ayrıca ailelerin en kritik sosyal ve maddi desteğin yanı sıra sağlık çalışanlarından profesyonel desteğe de ihtiyaç duydukları belirlendi.
Sonuç: Özel ihtiyaçları olan çocukların aileleri, çocuklarının hastalıklarıyla ilgili bilgi, hizmet ve kaynaklara erişime ihtiyaç duymaktadır. Ayrıca engelli bir çocuğun bakımı konusunda kişisel ve toplumsal kaygılar taşımaya devam ediyorlar.

Anahtar kelimeler: Aile İhtiyaçları, Ebeveynler, Özel Gereksinimli Çocuklar

Anahtar Kelimeler

Aile İhtiyaçları, Ebeveynler, Özel Gereksinimli Çocuklar.

Kaynakça

• 1. World Health Organization. Disability, 2021. Retrieved from https://www.who.int/health-topics/disabilityErişim tarihi: 31.05.2024
• 2. Vanegas, S. B., & Abdelrahim, R. Characterizing the systems of support for families of children with disabilities: A review of the literature. Journal of Family Social Work, 2016, 19(4), 286-327. UNICEF Türkiye. Children with Disabilities, 2021. Retrieved from https://www.unicef.org/turkiye/en/topics/children-disabilities. Erişim tarihi: 31.05.2024
• 3. Jenaro, C., Flores, N., Gutiérrez-Bermejo, B., Vega, V., Pérez, C., & Cruz, M. Parental Stress and Family Quality of Life: Surveying Family Members of Persons with Intellectual Disabilities. International Journal of Environmental Research and Public Health, 2020, 17(23), 9007. https://doi.org/10.3390/ijerph17239007
• 4. Nuri, R.P., Aldersey, H.M., Ghahari, S. Needs of families of children with cerebral palsy in Bangladesh: A qualitative study. Child Care Health Dev. 2019, 45, 36–44.
• 5. Gréaux, M., Moro, M.F., Kamenov, K., Russell, A.M., Barrett, D., & Cieza, A. Health equity for persons with disabilities: a global scoping review on barriers and interventions in healthcare services. Int. J. Equity Health, 2023, 22(1), 236. doi: 10.1186/s12939-023-02035-w.
• 6. Iacob, C.I., Avram, E., Cojocaru, D., & Podina, I.R. Resilience in familial caregivers of children with developmental disabilities: A meta-analysis. Journal of Autism and Developmental Disorders, 2020, 50(11), 4053-4068.
• 7. Hassanein, E. E., Adawi, T. R., & Johnson, E. S. Social support, resilience, and quality of life for families with children with intellectual disabilities. Research in Developmental Disabilities, 2021, 112, 103910.
• 8. Özaydin, L., Karaçul, F.E., Kayhan, N., Büyüköztürk, S., Karahan, S., & Simeonsson, R.J. Assessing Needs of Parents with Children with Disabilities in Turkey. Psycho-Educational Research Reviews, 2021, 10(3), 255-267
• 9. Cengiz, S., Yıldız, M.N., & Peker, A. Özel gereksinimli çocuğa sahip ebeveynler ile tipik gelişim gösteren çocuğa sahip ebeveynlerin stres ve yaşam doyum düzeylerinin incelenmesi. OPUS International Journal of Society Researches, 2021, 17(36), 2940-2956.
• 10. Cheng, A.W.Y., & Lai, C.Y.Y. Parental stress in families of children with special educational needs: a systematic review. Front. Psychiatry, 2023, 14, 1198302. doi: 10.3389/fpsyt.2023.1198302. PMID: 37636816; PMCID: PMC10449392
• 11. Bani Odeh, K., & Lach, L. M. Barriers to, and facilitators of, education for children with disabilities worldwide: a descriptive review. Front. Public Health, 2024, 11, 1294849. doi: 10.3389/fpubh.2023.1294849
• 12. Aduful, A.K., Boamah-Mensah, F., Nyarko, M.Y., Neizer, M.L., Brew, Y.N., Williams, L.A., Calys-Tagoe, B.N.L., & Ackun, H.K.M. Family Needs Assessment of Patients with Cerebral Palsy Attending Two Hospitals in Accra, Ghana. Children (Basel), 2023, 10(8), 1313. doi: 10.3390/children10081313.
• 13. Kyeremateng, J.D.A., Edusei, A., Dogbe, J.A., Opoku, M.P., Nketsia, W., Hammond, C., & Afriyie, S.A. Experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in Ghana. Afr. J. Disabil., 2019, 8, 577. [CrossRef]
• 14. Polack, S., Adams, M., O’Banion, D., Baltussen, M., Asante, S., Kerac, M., Gladstone, M., & Zuurmond, M. Children with cerebral palsy in Ghana: Malnutrition, feeding challenges, and caregiver quality of life. Dev. Med. Child. Neurol., 2018, 60, 914–921.
• 15. Shaffer, E.J., Lape, J.E., & Salls, J. Decreasing stress for parents of special needs children through a web-based mindfulness program: a pilot study. Int. J. Allied Health Sci. Pract., 2020, 18. doi: 10.46743/1540-580X/2020.1887
• 16. Huang, X.Q., Zhang, H., & Chen, S. Neuropsychiatric symptoms, parenting stress and social support in Chinese mothers of children with autism spectrum disorder. Curr. Med. Sci., 2019, 39, 291–297. doi: 10.1007/s11596-019-2033-3
• 17. Li, X.S., Pinto-Martin, J.A., Thompson, A., Chittams, J., & Kral, T.V. Weight status, diet quality, perceived stress, and functional health of caregivers of children with autism spectrum disorder. J. Special Pediatr. Nurs., 2018, 23, e12205. doi: 10.1111/jspn.12205
• 18. Zeng, S., Hu, X., Zhao, H., & Stone-MacDonald, A.K. Examining the relationships of parental stress, family support and family quality of life: a structural equation modeling approach. Res. Dev. Disabil., 2020, 96, 103523. doi: 10.1016/j.ridd.2019
• 19. Feizi, A., Najmi, B., Salesi, A., Chorami, M., & Hoveidafar, R. Parenting stress among mothers of children with different physical, mental, and psychological problems. J. Res. Med. Sci., 2014, 19, 145–152.
• 20. Chu, S.Y., Park, H., Lee, J., Shaharuddin, K.K.B., & Gan, C.H. Self-stigma and its associations with stress and quality of life among Malaysian parents of children with autism. Child Care Health Dev., 2020, 46, 485–494. doi: 10.1111/cch.12771
• 21. Park, J., & Yoon, J. A phenomenological study of parenting stress among Korean mothers of deaf children. Am. Ann. Deaf., 2018, 163, 440–462. doi: 10.1353/aad.2018.0028
• 22. Chan, R.C., Yi, H., & Siu, Q.K. Polymorbidity of developmental disabilities: additive effects on child psychosocial functioning and parental distress. Res. Dev. Disabil., 2020, 99, 103579–103579. doi: 10.1016/j.ridd.2020.103579
• 23. Buluş, S. Engelli bireylere yönelik kamusal sosyal yardım ve sosyal hizmetler. Yıldırım Beyazıt Hukuk Dergisi, 2022, Prof. Dr. M. Fatih UŞAN’a Dekanlıkta 10. Yıl Anısına Teşekkür Armağanı, 2022-2, 835-872. https://doi.org/10.33432/ybuhukuk.1136491
• 24. Yanagisawa, S., Swannimitr, A., Singhala, K., Rujkorakarn, D., Aryamuang, S., Hashimoto, H., & Sakamoto, M. Needs assessment of caregivers of children with disabilities in resource-limited settings. J. Rural Med., 2022, 17(3), 143-150. doi: 10.2185/jrm.2021-062.
• 25. Pelentsov, L.J., Laws, T.A., & Esterman, A.J. The supportive care needs of parents caring for a child with a rare disease: a scoping review. Disabil. Health J., 2015, 8, 475–491.
• 26. Bunning, K., Gona, J.K., & Newton, C.R. Empowering self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Impacts and their underlying mechanisms. PLoS One, 2020, 15, e0229851.
• 27. Grover, S. Rebooting your family communication style. Psychology Today, 2022. Retrieved from https://www.psychologytoday.com/us/blog/when-kids-call-the-shots/202203/rebooting-your-family-communication-style
• 28. Johnson, M., & Lee, R. The role of professional support in enhancing family communication. Journal of Family Studies, 2019, 28(3), 215-230.
• 29. Aksakal Kuc, H., & Atasayar, M. Emotional Structures of Parents with Special Needed Children and Basic Dynamics in Family Education. Turkish Journal of Applied Social Work, 2019, 1(2), 12-24.
• 30. dos Santos, R., Isakov, A.B., Martins, C., Antunes, A.P., Zegarac, N., & Nunes, C. Professional Skills in Family Support: A Systematic Review. Social Sciences, 2024, 13(3), 176. https://doi.org/10.3390/socsci13030176
• 31. Zegarac, N., Isakov, A.B., Nunes, C., & Antunes, A. Workforce Skills in Family Support: A Systematic Review. Research on Social Work Practice, 2021, 31, 400–409.
• 32. American Psychological Association. Sibling relationships and support. American Psychological Association, 2022. Retrieved from https://www.apa.org/monitor/2022/03/feature-sibling-relationships. Erişim tarihi:31.05.2024
• 33. Li, S., Tang, Y., & Zheng, Y. How the home learning environment contributes to children's social-emotional competence: A moderated mediation model. Front. Psychol., 2023, 14, 1065978. doi: 10.3389/fpsyg.2023.1065978
• 34. Özer, M. 2-6 yaş arasında otizm spektrum bozukluğu tanılı çocuğu olan annelerin özel eğitim ve rehabilitasyon merkezlerinde sunulan hizmetlere ilişkin deneyimleri (Master's thesis, Marmara Üniversitesi), 2021.
• 35. Jones, D., & Green, S. Integrating children with disabilities into society: A family perspective. Family Health Journal, 2022, 40(1), 58-75.
• 36. Frosch, C.A., Schoppe-Sullivan, S.J., & O'Banion, D.D. Parenting and Child Development: A Relational Health Perspective. Am. J. Lifestyle Med., 2019, 15(1), 45-59. doi: 10.1177/1559827619849028
• 37. Yazıcıoğlu, Y & Erdoğan, S.(2014). SPSS uygulamalı bilimsel araştırma yöntemleri. Ankara: Detay.