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The Impact of Functional Independence Level and Age on the Quality of Life of Mothers with Down Syndrome Children

Yıl 2020, Cilt: 18 Sayı: 1, 29 - 40, 15.04.2020

Öz

INTRODUCTION: This study was investigate the impact of level of functional independence and ages on the quality of life of the mothers in children with Down Syndrome.

MATERIALS and METHODS: Thirtyseven Down syndrome children (7.9±3.5 years) were included in this study. Functional independent level of children were evaluated by using Functional Independence Measure, mothers quality of life were evaluated by using Sort Form-36. Down syndrome children were classified according their Functional Independence Measure total score into two groups; need observation (36-90 scores) (n=19), and independent (91-126 scores) (n=18) groups.

RESULTS: Functional Independence Measure total scores of children in need obsevation group and children in independent group were 73.7±15.4, 106.7±11.6, respectively. Sort Form -36 Physical, Sort Form -36 Mental and Sort Form -36 Total scores of children in need obsevation group were 53.1±25.1, 49.6 ± 14.9 and 102.7±37.4 and children in independent group scores were 68.3±21.6, 62.1±13,9 and 130.5±33.7, respectively. When we compared Sort Form -36 Mental and Sort Form -36 Total scores of the groups were significant in favor of independent group (p<0,05), but the difference of Sort Form-36 Physical score was insignificant (p>0,05). In addition, it was found no relationships between the quality of life of mothers and children age in the all groups (p>0,05).

CONCLUSIONS: The results of our study suggested that functional dependence level of Down syndrome children effects on mothers’ quality of life and affected domain of quality of life was mental health. It was seen that the age of Down syndrome children did’nt has effect on quality of life of mothers.

Kaynakça

  • 1.Lauteslager PEM. Down Sendromlu çocuklarda motor gelişim ve müdahalesi, Baskı Evi Matbaa, Hollanda, 2004.
  • 2.Leonard S, Msall M, Bower C, Tremont M, Leonard H. Functional status of school-aged children with Down syndrome. J Paediatr Child Health. 2002; 38: 160–5.
  • 3.Carr J. Mental and motor development in young mongol children. J Ment Defic Res. 1970; 14: 205-20.
  • 4.Connolly BH, Michael BT. Performance of retarded children, with and without Down’s syndrome, on the Bruininks Oseretsky test of motor proficiency. Phys Ther. 1986; 66: 344-8.
  • 5.Damrosch S, Perry L. Self-reported adjustment, chronic sorrow, and coping of parents of children with Down syndrome. Nurs Res. 1989; 38: 25– 30.
  • 6.Olshansky S. Chronic sorrow: A response to having a mentally defective child. Soc Casework. 1962; 43: 190–3.
  • 7.Wikler L, Wasow M, Hatfied E. Chronic sorrow revisited: Parents vs. professional depiction of the adjustment of parents of mentally retarded children. Am J Orthopsychiat. 1981; 51: 63–70.
  • 8.Olsson MB, Hwang PC. Depression in mothers and fathers of children with intellectual disability. J Intellect Disabil Res. 2001; 45: 535–43.
  • 9.Spangenberg J, Theron J. Stress and coping in parents of children with Down syndrome. Stud Psychol. 2000; 43: 41– 8.
  • 10.Seltzer MM, Greenberg JS, Floyd FJ, Pettee Y, Hong J. Life course impacts of parenting a child with a disability. Am J Ment Retard. 2001; 106: 265– 86.
  • 11.Hodapp RM. Families of persons with Down syndrome: New perspectives, findings, and research and service needs. Ment Retard Dev Disabil Res Rev. 2007; 13: 279-87.
  • 12.Fidler DJ. The emergence of a syndrome-specific personality profile in young children with Down syndrome. Downs Syndr Res Pract. 2006; 10(2): 53-60. doi: 10.3104/reprints.305.
  • 13.Fidler DJ, Hepburn S, Rogers S. Early learning and adaptive behaviour in toddlers with Down syndrome: Evidence of an emerging behavioural phenotype. Downs Syndr Res Pract. 2006; 9(3): 37-44.
  • 14.Silverman W. Down syndrome: cognitive phenotype. Ment Retard Dev Disabil Res Rev. 2007; 13: 228-36.
  • 15.Scorgie K, Sobsey D. Transformational outcomes associated with parenting children who have disabilities. Ment Retard. 2000; 38(3): 195-206.
  • 16.Van Riper M. A change of plans: the birth of a child with Down syndrome doesn’t have to be a negative experience. Am J Nurs. 2003; 103: 71-4.
  • 17.Van Riper M. Families of children with Down syndrome: Responding to “a change of plans” with resilience. J Pediatr Nurs. 2007; 22: 116-28.
  • 18.Baker BL, McIntyre LL, Blacher J, et al. Pre-school children with and without developmental delay: Behavior problems and parenting stress over time. J Intellect Disabil Res. 2003; 47: 217– 30.
  • 19.Hedov G, Anneren T, Wikblad K. Swedish parents of children with Down’s syndrome. Scand J Caring Sci. 2002; 16: 424– 30.
  • 20.Lam L, Mackenzie A. Coping with a child with Down syndrome: The experiences of mothers in Hong Kong. Qual Health Res. 2002; 12: 223– 37.
  • 21.Olsson MB, Hwang PC. Influence of macrostructure of society on the life situation of families with a child with intellectual disability: Sweden as an example. J Intellect Disabil Res. 2003; 47: 328– 41.
  • 22.Msall ME, DiGaudio K, Duffy LC, LaForest S, Braun S, Granger CV. WeeFIM: normative sample of an instrument for tracking functional independence in children. Clin Pediatr. 1994; 33: 431–8.
  • 23.Wong V, Wong S, Chan K, Wong W. Functional Independence Measure (WeeFIM) for Chinese children: Hong Kong cohort. Pediatrics 2002; 109 (2): E36
  • 24.Koçyiğit H, Aydemir Ö, Fişek G, Memiş A. Kısa Form-36 (KF-36)’ nın Türkçe versiyonunun Güvenilirliği. İlaç ve Tedavi Dergisi. 1998; 12: 102-6.
  • 25.Tabachnick B, Fidell L. Computer-Assisted research Design and Analysis. Boston: Allyn and Bacon; 2001.
  • 26.Esdaile SA, Greenwood KM. A comparison of mothers’ and fathers’ experience of parenting stress and attributions for parent child interaction outcomes. Occup Ther Int. 2003; 10: 115-26.
  • 27.Glidden LM, Schoolcraft SA. Depression: its trajectory and correlates in mothers rearing children with intellectual disability. J Intellect Disabil Res. 2003; 47: 250-63.
  • 28.Eisenhower AS, Baker BL, Blacher J. Preschool children with intellectual disability: Syndrome specificity, behavior problems, and maternal well-being. J Intellect Disabil Res. 2005; 49: 657-71.
  • 29.Bourke J, Rıccıardo B, Bebbıngton A, Aiberti K, Jacoby P, Dyke P, et al. Physical and Mental Health in Mothers of Children with Down Syndrome. J Pediatr. 2008; 153: 320-6.

Down Sendromlu Çocuklarin Günlük Yaşamdaki Fonksiyonel Düzeyinin Ve Yaşinin Annelerin Yaşam Kalitesine Etkisi

Yıl 2020, Cilt: 18 Sayı: 1, 29 - 40, 15.04.2020

Öz

GİRİŞ ve AMAÇ: Bu çalışma, Down sendromlu çocukların günlük yaşamdaki işlevsel düzeyinin ve yaşının, annelerin yaşam kalitesi üzerine etkisini incelemek amacıyla planlanmıştır.

YÖNTEM ve GEREÇLER: Çalışmaya, yaş ortalaması 7,9±3,5 yıl olan Down sendromlu 37 çocuk alındı. Çocukların işlevsel bağımsızlık düzeyi, İşlevsel Bağımsızlık Ölçeği ile, annelerin yaşam kalitesi Kısa Form-36 ile değerlendirildi. İşlevsel Bağımsızlık Ölçeği toplam puanı 36-90 arasında olanlar, gözlem gerektiren Down sendromu grubu (n=18) ve 91-126 arasında olanlar bağımsız Down sendromu grubu (n=19) olarak iki gruba ayrıldı. İstatistiksel incelemede Mann-Whitney U testi ve Spearman korelasyon testi kullanıldı.

BULGULAR: Gözlem gerektiren Down sendromlu çocukların toplam İşlevsel Bağımsızlık Ölçeği puanları 73,7±15,4 iken, bağımsız Down sendromu grubundaki çocukların puanları 106,7±11,6 bulundu. Her iki grup açısından ailelerin Kısa Form-36 zihinsel, fiziksel ve toplam puanları sırasıyla, gözleme ihtiyaç duyanların; 49,6±14,9, 53,1±25,1 ve 102,7±37,4 iken, bağımsızların; 62,1±13,9, 68,3±21,6 ve 130,5±33,7’dir. Gruplar karşılaştırıldığında Kısa Form-36 Zihinsel ve Kısa Form-36 Toplam puanları bağımsız Down sendromlu çocukların aileleri lehine anlamlı iken (p<0,05), Kısa Form-36 Fiziksel puanı açısından fark anlamsızdı (p>0,05). Bunun yanı sıra, çocukların yaşları ile annelerin yaşam kalitelerinin tüm alt testleri arasında her iki grupta herhangi bir ilişki bulunmadı (p>0,05).

TARTIŞMA ve SONUÇ: Çalışmamızın sonucu, Down sendromlu çocukların işlevsel bağımsızlık düzeyine bağlı olarak ailelerin yaşam kalitesinin etkilendiği ve yaşam kalitesindeki etkilenmenin zihinsel açıdan olduğunu düşündürmüştür. Çocuğun yaşı ile annenin yaşam kalitesinin ilişkili olmadığı görülmüştür.

Kaynakça

  • 1.Lauteslager PEM. Down Sendromlu çocuklarda motor gelişim ve müdahalesi, Baskı Evi Matbaa, Hollanda, 2004.
  • 2.Leonard S, Msall M, Bower C, Tremont M, Leonard H. Functional status of school-aged children with Down syndrome. J Paediatr Child Health. 2002; 38: 160–5.
  • 3.Carr J. Mental and motor development in young mongol children. J Ment Defic Res. 1970; 14: 205-20.
  • 4.Connolly BH, Michael BT. Performance of retarded children, with and without Down’s syndrome, on the Bruininks Oseretsky test of motor proficiency. Phys Ther. 1986; 66: 344-8.
  • 5.Damrosch S, Perry L. Self-reported adjustment, chronic sorrow, and coping of parents of children with Down syndrome. Nurs Res. 1989; 38: 25– 30.
  • 6.Olshansky S. Chronic sorrow: A response to having a mentally defective child. Soc Casework. 1962; 43: 190–3.
  • 7.Wikler L, Wasow M, Hatfied E. Chronic sorrow revisited: Parents vs. professional depiction of the adjustment of parents of mentally retarded children. Am J Orthopsychiat. 1981; 51: 63–70.
  • 8.Olsson MB, Hwang PC. Depression in mothers and fathers of children with intellectual disability. J Intellect Disabil Res. 2001; 45: 535–43.
  • 9.Spangenberg J, Theron J. Stress and coping in parents of children with Down syndrome. Stud Psychol. 2000; 43: 41– 8.
  • 10.Seltzer MM, Greenberg JS, Floyd FJ, Pettee Y, Hong J. Life course impacts of parenting a child with a disability. Am J Ment Retard. 2001; 106: 265– 86.
  • 11.Hodapp RM. Families of persons with Down syndrome: New perspectives, findings, and research and service needs. Ment Retard Dev Disabil Res Rev. 2007; 13: 279-87.
  • 12.Fidler DJ. The emergence of a syndrome-specific personality profile in young children with Down syndrome. Downs Syndr Res Pract. 2006; 10(2): 53-60. doi: 10.3104/reprints.305.
  • 13.Fidler DJ, Hepburn S, Rogers S. Early learning and adaptive behaviour in toddlers with Down syndrome: Evidence of an emerging behavioural phenotype. Downs Syndr Res Pract. 2006; 9(3): 37-44.
  • 14.Silverman W. Down syndrome: cognitive phenotype. Ment Retard Dev Disabil Res Rev. 2007; 13: 228-36.
  • 15.Scorgie K, Sobsey D. Transformational outcomes associated with parenting children who have disabilities. Ment Retard. 2000; 38(3): 195-206.
  • 16.Van Riper M. A change of plans: the birth of a child with Down syndrome doesn’t have to be a negative experience. Am J Nurs. 2003; 103: 71-4.
  • 17.Van Riper M. Families of children with Down syndrome: Responding to “a change of plans” with resilience. J Pediatr Nurs. 2007; 22: 116-28.
  • 18.Baker BL, McIntyre LL, Blacher J, et al. Pre-school children with and without developmental delay: Behavior problems and parenting stress over time. J Intellect Disabil Res. 2003; 47: 217– 30.
  • 19.Hedov G, Anneren T, Wikblad K. Swedish parents of children with Down’s syndrome. Scand J Caring Sci. 2002; 16: 424– 30.
  • 20.Lam L, Mackenzie A. Coping with a child with Down syndrome: The experiences of mothers in Hong Kong. Qual Health Res. 2002; 12: 223– 37.
  • 21.Olsson MB, Hwang PC. Influence of macrostructure of society on the life situation of families with a child with intellectual disability: Sweden as an example. J Intellect Disabil Res. 2003; 47: 328– 41.
  • 22.Msall ME, DiGaudio K, Duffy LC, LaForest S, Braun S, Granger CV. WeeFIM: normative sample of an instrument for tracking functional independence in children. Clin Pediatr. 1994; 33: 431–8.
  • 23.Wong V, Wong S, Chan K, Wong W. Functional Independence Measure (WeeFIM) for Chinese children: Hong Kong cohort. Pediatrics 2002; 109 (2): E36
  • 24.Koçyiğit H, Aydemir Ö, Fişek G, Memiş A. Kısa Form-36 (KF-36)’ nın Türkçe versiyonunun Güvenilirliği. İlaç ve Tedavi Dergisi. 1998; 12: 102-6.
  • 25.Tabachnick B, Fidell L. Computer-Assisted research Design and Analysis. Boston: Allyn and Bacon; 2001.
  • 26.Esdaile SA, Greenwood KM. A comparison of mothers’ and fathers’ experience of parenting stress and attributions for parent child interaction outcomes. Occup Ther Int. 2003; 10: 115-26.
  • 27.Glidden LM, Schoolcraft SA. Depression: its trajectory and correlates in mothers rearing children with intellectual disability. J Intellect Disabil Res. 2003; 47: 250-63.
  • 28.Eisenhower AS, Baker BL, Blacher J. Preschool children with intellectual disability: Syndrome specificity, behavior problems, and maternal well-being. J Intellect Disabil Res. 2005; 49: 657-71.
  • 29.Bourke J, Rıccıardo B, Bebbıngton A, Aiberti K, Jacoby P, Dyke P, et al. Physical and Mental Health in Mothers of Children with Down Syndrome. J Pediatr. 2008; 153: 320-6.
Toplam 29 adet kaynakça vardır.

Ayrıntılar

Birincil Dil Türkçe
Konular İç Hastalıkları
Bölüm Research Article
Yazarlar

Bilge Başakçı Çalık 0000-0002-7267-7622

Sebahat Yaprak Çetin 0000-0002-7467-1398

Mustafa Can Kılıç Bu kişi benim

Ferruh Taşpınar Bu kişi benim

Ümmühan Baş Aslan Bu kişi benim 0000-0001-6483-503X

Yayımlanma Tarihi 15 Nisan 2020
Yayımlandığı Sayı Yıl 2020 Cilt: 18 Sayı: 1

Kaynak Göster

APA Başakçı Çalık, B., Çetin, S. Y., Kılıç, M. C., Taşpınar, F., vd. (2020). Down Sendromlu Çocuklarin Günlük Yaşamdaki Fonksiyonel Düzeyinin Ve Yaşinin Annelerin Yaşam Kalitesine Etkisi. Güncel Pediatri, 18(1), 29-40.
AMA Başakçı Çalık B, Çetin SY, Kılıç MC, Taşpınar F, Baş Aslan Ü. Down Sendromlu Çocuklarin Günlük Yaşamdaki Fonksiyonel Düzeyinin Ve Yaşinin Annelerin Yaşam Kalitesine Etkisi. Güncel Pediatri. Nisan 2020;18(1):29-40.
Chicago Başakçı Çalık, Bilge, Sebahat Yaprak Çetin, Mustafa Can Kılıç, Ferruh Taşpınar, ve Ümmühan Baş Aslan. “Down Sendromlu Çocuklarin Günlük Yaşamdaki Fonksiyonel Düzeyinin Ve Yaşinin Annelerin Yaşam Kalitesine Etkisi”. Güncel Pediatri 18, sy. 1 (Nisan 2020): 29-40.
EndNote Başakçı Çalık B, Çetin SY, Kılıç MC, Taşpınar F, Baş Aslan Ü (01 Nisan 2020) Down Sendromlu Çocuklarin Günlük Yaşamdaki Fonksiyonel Düzeyinin Ve Yaşinin Annelerin Yaşam Kalitesine Etkisi. Güncel Pediatri 18 1 29–40.
IEEE B. Başakçı Çalık, S. Y. Çetin, M. C. Kılıç, F. Taşpınar, ve Ü. Baş Aslan, “Down Sendromlu Çocuklarin Günlük Yaşamdaki Fonksiyonel Düzeyinin Ve Yaşinin Annelerin Yaşam Kalitesine Etkisi”, Güncel Pediatri, c. 18, sy. 1, ss. 29–40, 2020.
ISNAD Başakçı Çalık, Bilge vd. “Down Sendromlu Çocuklarin Günlük Yaşamdaki Fonksiyonel Düzeyinin Ve Yaşinin Annelerin Yaşam Kalitesine Etkisi”. Güncel Pediatri 18/1 (Nisan 2020), 29-40.
JAMA Başakçı Çalık B, Çetin SY, Kılıç MC, Taşpınar F, Baş Aslan Ü. Down Sendromlu Çocuklarin Günlük Yaşamdaki Fonksiyonel Düzeyinin Ve Yaşinin Annelerin Yaşam Kalitesine Etkisi. Güncel Pediatri. 2020;18:29–40.
MLA Başakçı Çalık, Bilge vd. “Down Sendromlu Çocuklarin Günlük Yaşamdaki Fonksiyonel Düzeyinin Ve Yaşinin Annelerin Yaşam Kalitesine Etkisi”. Güncel Pediatri, c. 18, sy. 1, 2020, ss. 29-40.
Vancouver Başakçı Çalık B, Çetin SY, Kılıç MC, Taşpınar F, Baş Aslan Ü. Down Sendromlu Çocuklarin Günlük Yaşamdaki Fonksiyonel Düzeyinin Ve Yaşinin Annelerin Yaşam Kalitesine Etkisi. Güncel Pediatri. 2020;18(1):29-40.