NÖROGELİŞİMSEL VE EDİNSEL BEYİN HASARI OLAN ÇOCUKLARIN AİLE ETKİLENİMLERİNİN İNCELENMESİ

Abstract

Amaç: Literatürde, beyin hasarı olan çocukların aile etkilenimleri konusundaki çalışmalar  yetersizdir. Çalışmanın amacı, nörogelişimsel ve edinsel beyin hasarı olan çocukların aile etkilenimlerini, annelerin depresyon düzeylerini ve aile işleyişini etkileyebilecek faktörleri araştırmaktır.

Yöntem: Çalışmaya 44 beyin hasarı tanısı almış çocuk (nörogelişimsel=22, edinsel=22) ve onlara bakım veren anneleri dahil edildi. Çocukların fonksiyonel seviyesinin belirlenmesinde Pediatrik Fonksiyonel Bağımsızlık Ölçümü ve oral alım durumlarının belirlemesinde ise Fonksiyonel Oral Alım Skalası kullanıldı. Ailelerin etkilenimi ölçmek için Aile Etki Ölçeği (AEÖ) ve annelerin  depresyon düzeyini belirlemek için Beck Depresyon Ölçeği kullanıldı.

Sonuçlar: Çalışma nörogelişimsel ve edinsel beyin hasarı tanısı olan çocuklarda aile etkilenimini ve annelerin depresyon düzeylerinin benzer olduğunu gösterdi (p>0,05). Çalışmada ayrıca çocuğun beslenme süresi, annenin mesleği ve ailenin gelir düzeyinin aile etkilenimi üzerine etkisi olduğu saptandı (p<0,05).

Tartışma: Çalışmada nörogelişimsel ve edinsel beyin hasarı olan çocukların aile etkilenimlerinin ve annelerin depresyon düzeylerinin farklılık göstermemesi; literatürdeki konjenital ve edinsel durumlarla ilgili olarak adaptasyon süreci mekanizmasının yeterli açıklanmamasından kaynaklanmaktadır. İleride yapılacak çalışmaların bu mekanizmanın anlaşılmasına yönelik planlanması literatüre katkı sağlayacaktır. 

Keywords

• Edinsel,Beyin Hasarı,Aile

AN INVESTIGATION OF FAMILY IMPACT OF CHILDREN WITH CONGENITAL AND ACQUIRED BRAIN INJURY

Öz

Purpose: This study aimed to investigate the family impact of children with congenital and

acquired brain injury, the levels of depression in mothers, and the factors that might affect family

functioning.

Methods: This study included 42 children with brain injury (20 congenital, 22 acquired) and their

caregiver mothers. Impact on Family Scale (IFS) was used to evaluate family impact and the Beck

Depression Inventory for the level of depression in the mothers. The Functional Oral Intake Scale

for the status of oral intake of children.

Results: This study illustrated that the levels of family impact (z=-1.161, p=0.246) and mothers'

depression (z=-0.177, p=0.860) were similar in children with congenital and acquired brain injury.

In this study, a relationship was found between the child's feeding position (z=-0.684, p=0.043) and

family income level (z=5.981, p=0.046) with family impact.

Conclusion: The family impact of having children with disabilities may be related to many factors.

In order to understand this mechanism, future studies should be planned with a holistic approach.

The results of these studies, provide information to be used in the development of interventions

for parents of children with disabilities.

Anahtar Kelimeler

• Edinsel,Beyin Hasarı,Aile,Nörogelişimsel

Kaynakça

1. Referans 1 Greenwald BD, Burnett DM, Miller, M. A. Congenital and acquired brain injury. 1. Brain injury: epidemiology and pathophysiology. Arch Phys Med Rehabil. 2003; 84(3 Suppl 1):3-7.
2. Referans 2 Kurtzer‐White E, Luterman D. Families and children with hearing loss: Grief and coping. Ment Retard Dev Disabil Res Rev. 2003:9(4):232-235.
3. Referans 3 Micklewright JL, King TZ, O'Toole K, Henrich C, Floyd FJ. Parental distress, parenting practices, and child adaptive outcomes following traumatic brain injury. J Int Neuropsychol Soc. 2012;18(2):343-350.
4. Referans 4 Wittert DD. Parental reactions to having a child with disabilities. Nurs Spectr (DC/Baltimore metro ed.). 1998;8(17):12-14.
5. Referans 5 Sen E, Yurtsever S. Difficulties experienced by families with disabled children. J Spec Pediatr Nurs. 2007;12(4):238-252.
6. Referans 6 Conley-Jung C, Olkin R. Mothers with visual impairments who are raising young children. JVIB. 2001;95(01):14-29.
7. Referans 7 Bogart KR, Tickle-Degnen L, Ambady N. Compensatory expressive behavior for facial paralysis: adaptation to congenital or acquired disability. Rehabıl Psychol. 2012;57(1):43-51.
8. Referans 8 Palisano RJ, Almarsi N, Chiarello LA, Orlin MN, Bagley A, Maggs J. Family needs of parents of children and youth with cerebral palsy. Child Care Health Dev. 2010;36(1): 85-92.

9. Referans 9 Reichman NE, Corman H, Noonan K. Impact of child disability on the family. Matern Child Health J. 2008;12(6):679-683.
10. Referans 10 Aybay C, Erkin G, Elhan AH, Sirzai H, Ozel S. ADL assessment of nondisabled Turkish children with the WeeFIM instrument. Am J Phys Med Rehabil. 2007;86(3):176-182.
11. Referans 11 Tur BS, Küçükdeveci AA, Kutlay Ş, Yavuzer G, Elhan AH, Tennant A. Psychometric properties of the WeeFIM in children with cerebral palsy in Turkey. Dev Med Child Neurol. 2009;51(9):732-738.
12. Referans 12 Crary MA, Mann GDC, Groher ME. Initial psychometric assessment of a functional oral intake scale for dysphagia in stroke patients. Arch Phys Med Rehabil. 2005;86(8):1516-1520.
13. Referans 13 Cavlak U. Reliability and validity of Turkish version of the Impact on Family Scale: Assessment of depressive symptoms and quality of life in mothers with cerebral palsied children. J. Med. Sci. 2009;9(4):175-184.
14. Referans 14 Hisli N. Beck Depresyon Envanterinin Geçerliliği Üzerine Bir Çalışma (A study on the validity of Beck Depression Inventory). Psikoloji Dergisi. 1988;6:118-122.
15. Referans 15 Mu PF. Paternal reactions to a child with epilepsy: uncertainty, coping strategies, and depression. J ADV NURS. 2005;49(4):367-376.
16. Referans 16 Mary NL. Reactions of black, Hispanic, and white mothers to having a child with handicaps. Ment Retard. 1990;28(1):1-5.
17. Referans 17 Ho KM, Keiley MK. Dealing with denial: A systems approach for family professionals working with parents of individuals with multiple disabilities. TFJ. 2003;11(3):239-247.
18. Referans 18 Bogart KR. The role of disability self-concept in adaptation to congenital or acquired disability. Rehabıl Psychol. 2014;59(1):107-15.
19. Referans 19 Hastings RP. Child behaviour problems and partner mental health as correlates of stress in mothers and fathers of children with autism. JIDR. 2003;47(4-5):231-237.
20. Referans 20 Bender SL, Carlson JS. An initial investigation of parenting stress, social-emotional protective factors, and behavior concerns within a head start population. JEDP. 2013;3(1): 113.
21. Referans 21 Singer GH. Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. AJMR. 2006;111(3):155-169.
22. Referans 22 Crowe TK. Time use of mothers with young children: The impact of a child's disability. Dev Med Child Neurol. 1993;35(7):621-630.
23. Referans 23 Lindström C, Åman J, Norberg AL. Increased prevalence of burnout symptoms in parents of chronically ill children. Acta Paediatr. 2010;99(3):427-432.
24. Referans 24 Manikam R, Perman JA. Pediatric feeding disorders. J Clın Gastroenterol. 2000;30(1):34-46.
25. Referans 25 Morgan A, Ward E, Murdoch B, Kennedy B, Murison R. Incidence, characteristics, and predictive factors for dysphagia after pediatric traumatic brain injury. J Head Trauma Rehabil. 2003;18(3):239-251.
26. Referans 26 Garro A. Coping patterns in mothers/caregivers of children with chronic feeding problems. Journal of pediatric health care. 2004;18(3):138-144.
27. Referans 27 Garro A, Thurman SK, Kerwin ME, Ducette JP. Parent/caregiver stress during pediatric hospitalization for chronic feeding problems. J Pediatr Nurs. 2005;20(4):268-275.
28. Referans 28 Mailick Seltzer M, Greenberg JS, Floyd FJ, Pettee Y, Hong J. Life course impacts of parenting a child with a disability. Am J Ment Retard. 2001;106(3):265-286.
29. Referans 29 Shearn J, Todd S. Maternal employment and family responsibilities: The perspectives of mothers of children with intellectual disabilities. JARID. 2000;13(3):109-131.
30. Referans 30 Thyen U, Kuhlthau K, Perrin JM. Employment, child care, and mental health of mothers caring for children assisted by technology. J Pediatr. 1999;103(6):1235-1242.