Impact of Childhood Epilepsy on the Family

Yıl 2010, Cilt: 2 Sayı: 2, 190 - 205, 01.06.2010

Kerim Fazlıoğlu Çiçek Hocaoğlu F. Müjgan Sönmez

Öz

Whole family is affected when an illness appears in the family or when there is an uncertainty regarding the health of a member. Symptoms, therapy, course of the disorder, constraint of the daily activities and long term effects of childhood chronic diseases deeply impact health and structure of the families. Diagnosis of a chronic disease in children presents as a significant psychological and psychosocial risk factor to the parents and other family members. Despite these known facts, psychosocial problems of parents of epileptic children are often ignored and not even questioned. These parents frequently have to leave their jobs or ask for their elderly relatives to look after their children. This situation could lead to major financial and social problems, weakening in intrafamilial communication and disruption in family harmony. Childhood epilepsy brings a great strain on family's resources as other chronic diseases do and alter the life of significant others. According to biopsychosocial model, schemas in family relations influence the psychological process of the family members while the biopsychosocial process of the sick individual affect the functionality of the family. In other words, epilepsy affects not only the sick individual but also the family union. The family has to face many problems after definite diagnosis of epilepsy. Majority of the studies conducted on this issue mainly focused on the quality of life and family relations of the sick child, whereas only a few studies searched for possible burden and resulting problems of family members caused by epilepsy. Physicians in charge should not only focus on physical and mental health of the sick children but also on the problems of other members in the family bearing in mind psychosocial influences of the disorder on them. Additionally, preventive methods should be administered to protect the family from developing mental health problems. A multidiscipline training program aiming to provide social and psychiatric support would increase the awareness of the families about their coping system with the disease and thus revise their likely dysfunctional approaches.

Anahtar Kelimeler

Epilepsy, Child, Family Functioning, Anxiety, Coping Skills

Çocukluk Çağı Epilepsisinin Aileye Etkisi

Öz

Ailede bir hastalık ya da aile bireyleriyle ilgili bir belirsizlik olduğunda tüm aile etkilenir. Çocukluk dönemi kronik hastalıkları, belirti, sağaltım yöntemi, seyri, günlük aktivite kısıtlaması, uzun dönem etkisi gibi nedenlerle aileye birçok yük getirmektedir. Bir çocuğun kronik hastalık tanısı alması uzun dönemde ebeveyn ve diğer aile üyeleri üzerinde ruhsal ve psikososyal risklerin ortaya çıkmasına neden olmaktadır. Epilepsili çocukların ebeveynleri pek çok ruhsal sorun yaşamasına rağmen, genellikle ihmal edilmektedir. Bu ebeveynler sıklıkla işlerinden ayrılmak zorunda kalmakta ya da çocuklarının bakımını yaşlı akrabalarına bırakmaktadır. Bu durum büyük ekonomik ve sosyal sorunlara ve epilepsinin tahmin edilemeyen özellikleri ile ailede zayıf iletişime, ailenin uyumunun bozulmasına neden olmaktadır. Çocukluk dönemi epilepsileri diğer kronik hastalıklar gibi ailenin var olan kaynaklarında değişiklikler talep etmesinden dolayı tüm aileyi etkilemektedir. Biyopsikososyal modele göre aile ilişkilerinde işleyen kalıplar aile bireylerinin ruhsal süreçlerini, hasta bireyin biyopsikososyal süreçleri de ailenin işlevsellik sürecini etkilemektedir. Başka bir deyişle epilepsi yalnız epilepsili kişiyi etkilememekte, bir birim olan ailenin de etkilenmesine neden olmaktadır. Aile çocuğun epilepsi tanısı alması ile birlikte birçok sorunla yüzleşmek zorunda kalmaktadır. Epilepsi ile ilgili çok sayıda çalışmada hastanın yaşam kalitesi ve ailesiyle ilişkisi incelenmesine rağmen, az sayıda çalışmada ise epilepsiden kaynaklanan aile bireyleriyle ilgili sorunlar üzerinde durulmuştur. Aile bireylerinden her hangi bir kişide epilepsi olması durumunda yalnız hastanın sorunlarına odaklanılmamalı, ailedeki diğer bireylerinde de bu durumdan etkilenileceği düşünülüp tüm aile bireylerinin ruh sağlığını korumaya yönelik önleyici yöntemler geliştirilmeli ve uygulanmalıdır. Farklı disiplinlerden uzman kişilerle birlikte uygulanacak sosyal ve psikiyatrik destek hedefli eğitim programları ile ailelerin mevcut hastalıkla başa çıkma sistemlerine olan farkındalıkları artırılarak sorunlu yaklaşımlarını düzeltmeleri sağlanabilir.

Anahtar Kelimeler

Epilepsi, Çocuk, Aile İşlevleri, Kaygı, Başa Çıkma Tutumu

Kaynakça

• Goldbeck L. The impact of newly diagnosed chronic paediatric conditions on parental quality of life. Qual Life Res 2006; 15:1121–1131.
• Er DM. Çocuk, hastalık, anne-babalar ve kardeşler. Çocuk Sağlığı ve Hastalıkları Der- gisi 2006; 49:155-168.
• Meltzer LJ. Mothers of children with chronic illnesses: A caregiver burden model and summer camp as respite care (Ph.D. dissertation). United States-Florida, University of Florida, 2002.
• Thompson PJ, Upton D. The impact of chronic epilepsy on the family. Seizure 1992; 1:43-48.
• Rausch KFM. Moderating effects of family coping style on the relationship between physical and mental health of children with chronic illness (Psy.D. dissertation). United States – Texas, Our Lady of the Lake University, 2002.
• Fritts SL. The impact of chronic illness on the family, the educators, and the community: An ethnographic research study (Ed.D. dissertation). United States- California, California State University, Fresno and University of California, Davis, 2004.
• Cieurzo CE. Family environment, parental coping and distress, and socioeconomic status as predictors of psychological distress in chronically ill children (Ph.D. dissertation). United States-New York, Fordham University, 2002.
• Ferrari M, Mattehews MS, Barabas G. The family and the child with epilepsy. Fam Proc 1983; 22:53-59.
• Hobdell EF, Mitzie LG, Valencia I, Mare J . Chronic sorrow and coping in families of children with epilepsy. J Neurosci Nurs 2007; 39:76-82.
• Shore, CP. Maternal adaptation to a child's epilepsy (Ph.D. dissertation). United States-Indiana, Indiana University, 2002.
• Bridget LR, Kathy N, Speechley S, Levin MS. Parents’ and physicians’ perceptions of childhood epilepsy. Seizure 2003; 12:359-368.
• Pitts M. Psychology of Health: An Introduction. London, UK, Routledge. 1998.
• LeBlanc LA, Goldsmith T, Patel DR. Behavioral aspects of chronic illness in children and adolescents. Pediatr Clin North Am 2003; 50:859-878.
• Shore PC, Austin JK, Dunn WD. Maternal adaptation to a child’s epilepsy. Epilepsy Behav 2004; 5:557–568.
• Lee P. Epilepsy in the world: The social point of the view. Epilepsia 2002; 43:14-15.
• Cummings JL, Trimble MR. Nöropsikiyatri ve Davranış Nörolojisi. Ankara, Çizgi Tıp Yayınları, 2003.
• World Health Organization. Global campaign against epilepsy Atlas Epilepsy Care in the World 2005. Geneva, WHO, 2005.
• Jacoby A, Baker GA, Steen N, Potts P, Chadwick DW. The clinical course of epilepsy and its psychosocial correlates: Findings from a U.K. Community Study. Epilepsia 1996; 37:148-161.
• Rodenburg R, Meijer AM, Dekovic M, Aldenkamp AP. Family factors and psychopathology in children with epilepsy: A literature review. Epilepsy Behav 2005; 6:488–503.
• Noeker M, Haverkamp-Krois A, Haverkamp F. Development of mental health dysfunction in childhood epilepsy. Brain Dev 2005; 27:5-16.
• Baum KT, Byars AW, De Grauw TJ, Johnson CS, Perkins SM. Temperament, family environment, and behavior problems. Epilepsy Behav 2007; 10:319-327.
• Serdaroglu A, Ozkan S, Aydin K, Gucuyener K, Tezcan S, Aycan S. Prevalence of epilepsy in Turkish children between the ages of 0 and 16 years. J Child Neurol 2004; 19:271-274.
• Marin NW. Improving parent and child adjustment to epilepsy using parental strategic self-presentation and emotional disclosure (Ph.D. dissertation). United States - District of Columbia, The American University, 2003.
• Ziegler RG, Erba G, Holden L, Dennison H. The coordinated psychosocial and neurologic care of childrenwith seizures and their families. Epilepsia 2000; 41:732- 743.
• Haber LC, Austin JK, Huster GR, Lane KA, Perkins SM. Relationships between differences in mother-father perceptions and self-concept and depression in children with epilepsy. J Fam Nurs 2003; 9:59-78.
• Spangenberg JJ, Lalkhen N. Children with epilepsy and their families: Psychosocial issues. SA Fam Pract 2006; 48:60-63.
• Snead K, Ackerson J, Bailey K, Schmitt MM, Madan-Swain A, Martin RC. Taking charge of epilepsy: the development of a structured psychoeducational group intervention for adolescents with epilepsy and their parents. Epilepsy Behav 2004; 5: 547–556.
• Rodenburg R, Stams GJ, Meijer AM, Aldenkamp AP, Dekovic M. Psychopathology in children with epilepsy: A meta-analysis. J Pediatr Psychol 2005; 30:453-468.
• Mu PF. Paternal reactions to a child with epilepsy: uncertainty, coping strategies, and depression. J Adv Nurs 2005; 49:367–376.
• Chapieski L, Brewer V, Evankovich K, Culhane-Shelburne K, Zelman K, Alexander A. Adaptive functioning in children with seizures: Impact of maternal anxiety about epilepsy. Epilepsy Behav 2005; 7:246–252.
• Mu PF.Transition experience of parents caring of children with epilepsy: A phenomenological study. Int J Nurs Stud 2008; 45:543-551.
• Galletti F, Sturniolo MG. Counseling children and parents about epilepsy. Patient Educ Couns 2004; 55:422–425.
• Camfield C, Breau L, Camfield P. Impact of pediatric epilepsy on the family: A new scale for clinical and research use. Epilepsia 2001; 42:104-112.
• Thomas SV, Bindu VB. Psychosocial and economic problems of parents of children with epilepsy. Seizure 1999;8:66-69.
• Hodes M, Garralda ME, Rose G, Schwartz R. Maternal expressed emotion and adjustment in children with epilepsy. J Child Psychol 1999; 40:1083-1093.
• Baki O, Erdogan A, Kantarci O, Akisik G, Kayaalp L, Yalcinkaya C. Anxiety and depression in children with epilepsy and their mothers. Epilepsy Behav 2004; 5:958- 964.
• Ellis N, Upton D, Thompsan P. Epilepsy and the family: a review of current literature. Seizure 2000; 9:22-30.
• Oto R, Apak İ, Arslan S, Yavavlı A, Altındağ A, Karaca EE. Epilepsinin psikososyal etkileri. Klinik Psikiyatri Dergisi 2004; 7:210-214.
• Murray J. Coping with the uncertainty of uncontrolled epilepsy. Seizure 1993; 2:167- 178.
• Austin JK, Dunn DW, Johnson CS, Perkins SM. Behavioral issues involving children and adolescents with epilepsy and the impact of their families: recent research data. Epilepsy Behav 2004; 5:33-41.
• Ogata A, Amano K. A Psychosocial approach to epileptic patients. Epilepsia 2000; 41:36-38.
• Swallow VM, Jacoby A. Mothers' coping in chronic childhood illness: the effect of presymptomatic diagnosis of vesicoureteric refux. J Adv Nurs 2001; 33:69-78.
• Shore CP, Austin JK, Huster GA, Dunn DW. Identifying risk factors for maternal depression in families of adolescents with epilepsy. Journal for Specialists in Pediatric Nursing 2002; 7: 71-80.
• Yavuzer H. Çocuk ve Suç. İstanbul, Remzi Kitabevi, 1996.
• Bulut I. Aile Değerlendirme Ölçeği (ADÖ) El kitabı. Ankara, Özgüzeliş Matbaası, 1990.
• Smith ML, Elliott IM, Lach L. Cognitive, psychosocial, and family function one year after pediatric epilepsy surgery. Epilepsia 2004; 45:650-660.
• Rodrigues N, Patterson JM. Impact of severity of a child’s chronic condition on the functioning of two-parent families. J Pediatr Psychol 2006; 7:1–10.
• Nazlı S. Aile Danışmanlığı. Ankara, Nobel Yayıncılık, 2001.
• Drotar D. Relating parent and family functioning to the psychological adjustment of children with chronic health conditions: what have we learned? What do we need to know? J Pediatr Psychol 1997; 22:149-165.
• Stephan LHD. Parental factors associated with adaptation in children with pediatric epilepsy (D.N.S. dissertation). USA – Indiana, Indiana University School of Nursing, 2002.
• Ünal S, Kaya B, Çekem B, Özışık H, Çakıl G, Kaya M. Şizofreni, iki uçlu duygudurum bozukluğu ve epilepsi hastalarında aile işlevlerinin karşılaştırılması. Turk Psikiyatri Derg 2004; 15:291-299.
• Weinstein SC. Seizures and teens: The impact of seizures and epilepsy on families. Exceptional Parent 2007; 37:61-65.
• Rodenburg R, Meijer AM, Dekovic M, Aldenkamp AP. Family predictors of psychopathology in children with epilepsy. Epilepsia 2006; 47:601–614.
• Taylor SA. Management of Chronic Illness, Health Psychology, Fifth Edition. USA, McGraw-Hill, 2003.
• Sürmeli A. Anksiyete kavramı ve anksiyete bozukluluklarına genel bakış. In Psikiyatri Temel Kitabı, 1. Baskı (Eds C Güleç, E Köroğlu) Ankara, Hekimler Yayınlar Birliği, 1997.
• Öner N. Türkiye’de Kullanılan Psikolojik Testler. İstanbul, Boğaziçi Üniversitesi Yayın- ları, 1997.
• Chapieski L, Brewer V, Evankovich K, Culhane-Shelburne K, Zelman K, Alexander A. Adaptive functioning in children with seizures: Impact of maternal anxiety about epilepsy. Epilepsy Behav 2005; 7:246–252.
• Williams J, Steel C, Sharp GB, DelosReyes E, Phillips T, Bates S. Parental anxiety and quality of life in children with epilepsy. Epilepsy Behav 2003 4:483–486.
• Ramaglia G, Romeo A, Viri M, Lodi M, Sacchi S, Cioffi G. Impact of idiopathic epilepsy on mothers and fathers: Strain, burden of care, worries and perception of vulnerability. Epilepsia 2007; 48:1810–1813.
• Fritz SP. Predicting maternal adherence and child health status in childhood epilepsy: An exploratory model (Ph.D. dissertation). United States – Florida, University of Florida, 2003.
• Laybourn A, Hill M. Children with epilepsy and their families: needs and services. Child Care Health Dev 1994; 20:1-14.
• Baez T. The effects of stress on emotional well-being and resiliency through mediating mechanisms of active coping skills and family hardiness (Ph.D. dissertation). United States – Michigan, Michigan State University, 1999.
• Ağargün MY, Besiroğlu L, Kıran ÜK, Özer ÖA, Kara H. COPE (Başa Çıkma Tutumla- rını Değerlendirme Ölçeği): Psikometrik özelliklere ilişkin bir ön çalışma. Anadolu Psi- kiyatri Dergisi 2005; 6:221-226.
• Smith CL, Eisenberg N, Spini T, Chassin L. Children’s coping strategies and coping efficacy: Relations to parent socialization, child adjustment, and familial alcoholism. Dev Psychopathol 2006; 18:445-469.
• Honey A, Halse C. The specifics of coping: parents of daughters with anorexia nervosa. Qual Health Res 2006; 16:611-629.
• Ingledew DK, McDonagh G. What coping functions are served when health behaviours are used as coping strategies? J Health Psychol 1998; 3:195-213.
• Mua PF, Kuo HC, Chang KP. Boundary ambiguity,coping patterns and depression in mothers caring for children with epilepsy in Taiwan. Int J Nurs Stud 2005; 42:273– 282.
• Trute B, Hiebert-Murphy D. Family adjustment to childhood developmental disability: a measure of parent appraisal of family impacts. J Pediatr Psychol 2002; 27:271-280.
• Enock W. How families cope with chronic childhood illness (Ph.D. dissertation). United States - New York, New York University, 1991.
• Hoare P. The quality of life of children with chronic epilepsy and their families. Seizure 1993; 2:269-275.
• Haddad TM. Parenting children with epilepsy: Challenges and methods of coping (Ed.D. dissertation). United States – California, Fielding Graduate Institute, 2003.
• Pal DK, Chaudhury G, Das T, Sengupta S. Predictors of parental adjustment to children’s epilepsy in rural India. Child Care Health Dev 2002; 28:295–300.
• Yong L, Chengye J, Jiong Q. Factors affecting the quality of life in childhood epilepsy in China. Acta Neurol Scand 2006; 113:167–173.