Araştırma Makalesi
Outcomes of the Empowerment Training for the Families of Children Diagnosed with Down Syndrome in the 0-6 Age Group
Öz
Objective: The objective of this research is to test the effectiveness of the empowerment training given to families with children diagnosed with Down syndrome.
Material and Method: The study was conducted between February 2019 and January 2020 in three special education and rehabilitation centers in Izmir. In the empowerment training, information was given about the diagnosis of Down Syndrome, its causes, supportive treatment methods, and the rights of children diagnosed with Down Syndrome and their parents. The training time is approximately 90 minutes. The research data were collected through face-to-face interviews with the mothers of 14 children aged 0-6 years with a diagnosis of Down Syndrome. Family Information Form developed by the researchers and the Family Strengthening Scale developed by Koren, DeChillo and Friesen in 1992 and adapted to Turkish by Karakul et al. in 2018 were used to collect the data.
Results: The average age of the mothers in the study was 34.85±5.99 years (min.26; max.45), the mean age of the fathers was 38.57±5.55 years (min.29; max.48), and the average age of the children was 4.57±1.01 years (min.3; max.6). Before the family empowerment training, the average score of the parents’ family empowerment scale was 115.07±16.76. After the training, the average posttest score increased to 122.35±21.30 and was statistically significant (z = -2.136; p = 0.033).
Conclusion: It was concluded that family empowerment training given to parents is effective. It is recommended that parents with children diagnosed with Down Syndrome should be empowered by giving individualized training and by repeating the training periodically.
Anahtar Kelimeler
Proje Numarası
2018-GAP-SABF-0005
Kaynakça
- Cingil D, Gözüm S. Hastasına evde bakım veren aile bakım vericilerinin güçlendirilmesi: Sistematik derleme. Türkiye Klinikleri Halk Sağlığı Hemşireliği-Özel Konular. 2016; 2(3): 60-72.
- Honea NJ, Brintnall R, Given B, Sherwood P, Colao DB, Somers SC, et al. Putting evidence into practice: Nursing assessment and interventions to reduce family caregiver strain and burden. Clin J Oncol Nurs. 2008; 12(3):507-16.
- Wakimizu R, Yamaguchi K, Fujioka H. Family empowerment and quality of life of parents raising children with developmental disabilities in 78 Japanese families. Int J Nurs Sci. 2017; 4(1): 38-45.
- Wakimizu R, Fujioka H, Iejima A, Miyamoto S. Effectiveness of the group-based positive parenting program with japanese families raising a child with developmental disabilities: A longitudinal study. J Psychol Abnorm Child. 2014; 3(1): 113.
- Hsiu-Ying Y., Wei-Fen M, Jing-Long H, Kai-Chung H, Li-Chi C. Evaluating the effectiveness of a family empowerment program on family function and pulmonary function of children with asthma: A randomized control trial. Int J Nurs Stud. 2016; 60: 133-44.
- Bala J, Sarin J. Empowering parents of children with thalassemia. International Journal of Nursing Care. 2014; 2(1): 22-5.
- Barlow JH, Ellard DR. Psycho‐educational interventions for children with chronic disease, parents and siblings: An overview of the research evidence base. Child: Care, Health and Development. 2004; 30(6): 637- 45.
- Hook JL. Care in context: Men’s unpaid work in 20 countries, 1965– 2003. American Sociological Review. 2006; 71(4): 639-60.
- Murray MM, Handyside LM, Straka LA, Arton-Titus TV. Parent empowerment: Connecting with preservice special education teachers. School Community Journal. 2013; 23(1): 145–68.
- Smith J, Swallow V, Coyne I. Involving parents in managing their child’s long‐term condition‐a concept synthesis of family‐ centered care and partnership‐in‐care. J Pediatr Nurs. 2015; 30(1): 143–59.
- Segers EW, van den Hoogen A, van Eerden IC., Hafsteinsdóttir T, Ketelaar M. Perspectives of parents and nurses on the content validity of the Family Empowerment Scale for parents of children with a chronic condition: A mixed‐methods study. Child: Care, Health and Development. 2019; 45(1): 111-20.
- Swallow V, Lambert H, Santacroce S, Macfadyen A. Fathers and mothers developing skills in managing children’s long‐term medical conditions: How do their qualitative accounts compare? Child: Care, Health and Development. 2011; 37(4): 512-23.
- Sarı HY, Girli A. Özel eğitime gereksinimi olan çocuklar ve aile. (Ed. Rıdvan Küçükali). İçinde: Çocuk ve Aile. Ankara: Anı Yayıncılık; 2018. s. 311-14.
- Gibson CH. The process of empowerment in mothers of chronically ill children. J Adv Nurs. 1995; 21(6): 1201–10.
- Hallström I, Elander G. Families’ needs when a child is long‐ term ill: A literature review with reference to nursing research. Int J Nurs Pract. 2007; 13(3): 193–200.
- Payrovee Z, Kashaninia Z, Alireza Mahdaviani S, Rezasoltani P. Effect of family empowerment on the quality of life of school‐aged children with asthma. Tanaffos. 2014; 13(1): 35–42.
- Vuorenmaa M, Halme N, Åstedt‐Kurki P, Kaunonen M, Perälä ML. The validity and reliability of the Finnish Family Empowerment Scale (FES): a survey of parents with small children. Child: Care, Health and Development. 2014; 40(4): 597-606.
- Koren PE, DeChillo N, Friesen BJ. Measuring empowerment in families whose children have emotional disabilities: A brief questionnaire. Rehabilitation Psychology. 1992; 37(4): 305-21.
- Vuorenmaa M, Perälä ML, Halme N, Kaunonen M, Åstedt‐Kurki P. Associations between family characteristics and parental empowerment in the family, family service situations and the family service system. Child: Care, Health and Development. 2016; 42(1): 25-35.
- İlhan T. Özel gereksinimli 3-6 yaş çocuklarının ebeveynlerinin stress düzeyleri ile rolleri arasındaki ilişki. Ankara Üniversitesi Eğitim Bilimleri Fakültesi Özel Eğitim Dergisi. 2017; 18(03): 383-400.
- Akey TM, Marquis JG, Ross ME. Validatieon of scores on the psychological empowerment scale: a measure of empowerment for parents of children with a disability. Educ Psychol Meas. 2000; 60(3): 419-38.
- Karakul A, Akgül EA, Doğan P, Sarı HY. Aile Güçlendirme Ölçeğinin Türk dilinde psikometrik özellikleri. İzmir Kâtip Çelebi Üniversitesi Sağlık Bilimleri Dergisi. 2018; 3(3): (Ek 1), 111.
- Turan Gürhopur FD, İşler Dalgıç A. Zihinsel yetersiz çocuğu olan ebeveynlerde aile yükü. Journal of Psychiatric Nursing. 2017; 8(1): 9-16.
- Sarı HY. Zihinsel engelli çocuğu olan ailelerde aile yüklenmesi. C.Ü. Hemşirelik Yüksekokulu Dergisi. 2007; 11 (2): 1-7.
- Karaarslan MM, Çelebioğlu A. Zihinsel engelli çocuğu olan ebeveynlerin psikolojik durumları ile bakım yükünün değerlendirilmesi. Researcher: Social Science Studies. 2018; 6 (2): 188-200.
- Huiracocha L, Almeida C, Huiracocha K, Arteaga J, Arteaga A, Blume S. Parenting children with Down syndrome: Societal influences. J Child Health Care. 2017; 21(4): 488-97.
- Pisula E, Banasiak A. Empowerment in Polish fathers of children with autism and Down syndrome: the role of social support and coping with stress–a preliminary report. J Intellect Disabil Res. 2019; 64(6): 434-41.
- Melvin K, Meyer C, Ryan B. “We don’t know what we don’t know”: Providing information about communication to families of children with Down syndrome. Child: Care, Health and Development. 2019; 45(3): 423-32.
- Chiu MY, Yang X, Wong FHT, Li JH, Li J. Caregiving of children with intellectual disabilities in China–an examination of affiliate stigma and the cultural thesis. J Intellect Disabil Res. 2013; 57(12): 1117-29.
- Wakimizu R, Fujioka H, Nishigaki K, Matsuzawa A. Family empowerment and associated factors in Japanese families raising a child with severe motor and intellectual disabilities. Int J Nurs Sci. 2018; 5(4): 370-6.
- Burke MM, Lee CE, Rios K. A pilot evaluation of an advocacy programme on knowledge, empowerment, family–school partnership and parent well‐being. J Intellect Disabil Res. 2019; 63(8): 969-80.
- Bourke-Taylor HM, Jane F, Peat J. Healthy mothers healthy families workshop intervention: A preliminary investigation of healthy lifestyle changes for mothers of a child with a disability. J Autism Dev Disord. 2019; 49(3): 935-49.
- Çocuklar İçin Özel Gereksinim Değerlendirmesi Hakkında Yönetmelik. [cited 2021 Mar 25]. Available from: https://www. resmigazete.gov.tr/eskiler/2019/02/20190220-1.htm
- Çapık C. İstatistiksel güç analizi ve hemşirelik araştırmalarında kullanımı: Temel bilgiler. Anadolu Hemşirelik ve Sağlık Bilimleri Dergisi. 2014; 17(4): 268-74.
- Kang JS, Choi SY, Ryu EJ. Effects of a breastfeeding empowerment programme on Korean breastfeeding mothers: A quasi-experimental study. Int J Nurs Stud. 2008; 45(1): 14-23.
- Kuravackel GM, Ruble LA, Reese RJ, Ables AP, Rodgers AD, Toland MD. COMPASS for Hope: Evaluating the effectiveness of a parent training and support program for children with ASD. J Autism Dev Disord. 2018; 48(2): 404-16.
0-6 Yaş Grubu Down Sendromu Tanısı Olan Çocukların Ailelerine Yönelik Güçlendirme Eğitiminin Sonuçları
Öz
Amaç: Bu çalışmanın amacı, Down Sendromu tanısı olan çocukların ailelerine verilen güçlendirme eğitiminin etkinliğinin belirlenmesidir.
Gereç ve Yöntem: Çalışma, Şubat 2019-Ocak 2020 tarihleri arasında İzmir ilinde bulunan üç özel eğitim ve rehabilitasyon merkezinde yürütülmüştür. Güçlendirme eğitiminde Down Sendromu tanısının ne olduğu, nedenleri, destekleyici tedavi yöntemleri, Down Sendromu tanısı olan çocukların ve ebeveynlerinin hakları ile ilgili annelere bilgilendirme yapılmıştır. Eğitim süresi yaklaşık 90 dakikadır. Araştırma verileri, 0-6 yaş arası Down Sendromu tanısı olan 14 çocuğun annesi ile yüz yüze görüşülerek toplanmıştır. Verilerin toplanmasında araştırmacılar tarafından oluşturulan “Aile Bilgi Formu” ve Koren, DeChillo & Friesen tarafından 1992 yılında geliştirilen, Karakul ve arkadaşları tarafından 2018 yılında Türkçe’ye uyarlanan ve geçerlik güvenirliği yapılan “Aile Güçlendirme Ölçeği” kullanılmıştır.
Bulgular: Çalışmada yer alan annelerin yaş ortalamaları 34,85±5,99 yıl (min. 26; maks. 45), babaların yaş ortalamaları 38,57±5,55 yıl (min. 29; maks. 48), ve çocukların yaş ortalaması ise 4,57±1,01 yıldır (min. 3; maks. 6). Aile güçlendirme eğitimi öncesinde ebeveynlerin Aile Güçlendirme Ölçeği ön test puan ortalamasının 115,07±16,76 olduğu, eğitim sonrası ise son test puan ortalamasının 122,35±21,30’a yükselmiş olduğu saptanmış ve istatistiksel olarak anlamlı bulunmuştur (z=-2,136; p=0,033).
Sonuç: Aile güçlendirme eğitiminin, 0-6 yaş grubu Down Sendromu tanısı olan çocuğa sahip ebeveynler için etkin olduğu sonucuna ulaşılmıştır. Down Sendromu tanısı olan çocukların ailelerinin bireyselleştirilmiş eğitimler verilerek güçlendirilmesi ve verilen eğitimlerin belirli periyodlarla tekrarlanması önerilmektedir.
Anahtar Kelimeler
Proje Numarası
2018-GAP-SABF-0005
Kaynakça
- Cingil D, Gözüm S. Hastasına evde bakım veren aile bakım vericilerinin güçlendirilmesi: Sistematik derleme. Türkiye Klinikleri Halk Sağlığı Hemşireliği-Özel Konular. 2016; 2(3): 60-72.
- Honea NJ, Brintnall R, Given B, Sherwood P, Colao DB, Somers SC, et al. Putting evidence into practice: Nursing assessment and interventions to reduce family caregiver strain and burden. Clin J Oncol Nurs. 2008; 12(3):507-16.
- Wakimizu R, Yamaguchi K, Fujioka H. Family empowerment and quality of life of parents raising children with developmental disabilities in 78 Japanese families. Int J Nurs Sci. 2017; 4(1): 38-45.
- Wakimizu R, Fujioka H, Iejima A, Miyamoto S. Effectiveness of the group-based positive parenting program with japanese families raising a child with developmental disabilities: A longitudinal study. J Psychol Abnorm Child. 2014; 3(1): 113.
- Hsiu-Ying Y., Wei-Fen M, Jing-Long H, Kai-Chung H, Li-Chi C. Evaluating the effectiveness of a family empowerment program on family function and pulmonary function of children with asthma: A randomized control trial. Int J Nurs Stud. 2016; 60: 133-44.
- Bala J, Sarin J. Empowering parents of children with thalassemia. International Journal of Nursing Care. 2014; 2(1): 22-5.
- Barlow JH, Ellard DR. Psycho‐educational interventions for children with chronic disease, parents and siblings: An overview of the research evidence base. Child: Care, Health and Development. 2004; 30(6): 637- 45.
- Hook JL. Care in context: Men’s unpaid work in 20 countries, 1965– 2003. American Sociological Review. 2006; 71(4): 639-60.
- Murray MM, Handyside LM, Straka LA, Arton-Titus TV. Parent empowerment: Connecting with preservice special education teachers. School Community Journal. 2013; 23(1): 145–68.
- Smith J, Swallow V, Coyne I. Involving parents in managing their child’s long‐term condition‐a concept synthesis of family‐ centered care and partnership‐in‐care. J Pediatr Nurs. 2015; 30(1): 143–59.
- Segers EW, van den Hoogen A, van Eerden IC., Hafsteinsdóttir T, Ketelaar M. Perspectives of parents and nurses on the content validity of the Family Empowerment Scale for parents of children with a chronic condition: A mixed‐methods study. Child: Care, Health and Development. 2019; 45(1): 111-20.
- Swallow V, Lambert H, Santacroce S, Macfadyen A. Fathers and mothers developing skills in managing children’s long‐term medical conditions: How do their qualitative accounts compare? Child: Care, Health and Development. 2011; 37(4): 512-23.
- Sarı HY, Girli A. Özel eğitime gereksinimi olan çocuklar ve aile. (Ed. Rıdvan Küçükali). İçinde: Çocuk ve Aile. Ankara: Anı Yayıncılık; 2018. s. 311-14.
- Gibson CH. The process of empowerment in mothers of chronically ill children. J Adv Nurs. 1995; 21(6): 1201–10.
- Hallström I, Elander G. Families’ needs when a child is long‐ term ill: A literature review with reference to nursing research. Int J Nurs Pract. 2007; 13(3): 193–200.
- Payrovee Z, Kashaninia Z, Alireza Mahdaviani S, Rezasoltani P. Effect of family empowerment on the quality of life of school‐aged children with asthma. Tanaffos. 2014; 13(1): 35–42.
- Vuorenmaa M, Halme N, Åstedt‐Kurki P, Kaunonen M, Perälä ML. The validity and reliability of the Finnish Family Empowerment Scale (FES): a survey of parents with small children. Child: Care, Health and Development. 2014; 40(4): 597-606.
- Koren PE, DeChillo N, Friesen BJ. Measuring empowerment in families whose children have emotional disabilities: A brief questionnaire. Rehabilitation Psychology. 1992; 37(4): 305-21.
- Vuorenmaa M, Perälä ML, Halme N, Kaunonen M, Åstedt‐Kurki P. Associations between family characteristics and parental empowerment in the family, family service situations and the family service system. Child: Care, Health and Development. 2016; 42(1): 25-35.
- İlhan T. Özel gereksinimli 3-6 yaş çocuklarının ebeveynlerinin stress düzeyleri ile rolleri arasındaki ilişki. Ankara Üniversitesi Eğitim Bilimleri Fakültesi Özel Eğitim Dergisi. 2017; 18(03): 383-400.
- Akey TM, Marquis JG, Ross ME. Validatieon of scores on the psychological empowerment scale: a measure of empowerment for parents of children with a disability. Educ Psychol Meas. 2000; 60(3): 419-38.
- Karakul A, Akgül EA, Doğan P, Sarı HY. Aile Güçlendirme Ölçeğinin Türk dilinde psikometrik özellikleri. İzmir Kâtip Çelebi Üniversitesi Sağlık Bilimleri Dergisi. 2018; 3(3): (Ek 1), 111.
- Turan Gürhopur FD, İşler Dalgıç A. Zihinsel yetersiz çocuğu olan ebeveynlerde aile yükü. Journal of Psychiatric Nursing. 2017; 8(1): 9-16.
- Sarı HY. Zihinsel engelli çocuğu olan ailelerde aile yüklenmesi. C.Ü. Hemşirelik Yüksekokulu Dergisi. 2007; 11 (2): 1-7.
- Karaarslan MM, Çelebioğlu A. Zihinsel engelli çocuğu olan ebeveynlerin psikolojik durumları ile bakım yükünün değerlendirilmesi. Researcher: Social Science Studies. 2018; 6 (2): 188-200.
- Huiracocha L, Almeida C, Huiracocha K, Arteaga J, Arteaga A, Blume S. Parenting children with Down syndrome: Societal influences. J Child Health Care. 2017; 21(4): 488-97.
- Pisula E, Banasiak A. Empowerment in Polish fathers of children with autism and Down syndrome: the role of social support and coping with stress–a preliminary report. J Intellect Disabil Res. 2019; 64(6): 434-41.
- Melvin K, Meyer C, Ryan B. “We don’t know what we don’t know”: Providing information about communication to families of children with Down syndrome. Child: Care, Health and Development. 2019; 45(3): 423-32.
- Chiu MY, Yang X, Wong FHT, Li JH, Li J. Caregiving of children with intellectual disabilities in China–an examination of affiliate stigma and the cultural thesis. J Intellect Disabil Res. 2013; 57(12): 1117-29.
- Wakimizu R, Fujioka H, Nishigaki K, Matsuzawa A. Family empowerment and associated factors in Japanese families raising a child with severe motor and intellectual disabilities. Int J Nurs Sci. 2018; 5(4): 370-6.
- Burke MM, Lee CE, Rios K. A pilot evaluation of an advocacy programme on knowledge, empowerment, family–school partnership and parent well‐being. J Intellect Disabil Res. 2019; 63(8): 969-80.
- Bourke-Taylor HM, Jane F, Peat J. Healthy mothers healthy families workshop intervention: A preliminary investigation of healthy lifestyle changes for mothers of a child with a disability. J Autism Dev Disord. 2019; 49(3): 935-49.
- Çocuklar İçin Özel Gereksinim Değerlendirmesi Hakkında Yönetmelik. [cited 2021 Mar 25]. Available from: https://www. resmigazete.gov.tr/eskiler/2019/02/20190220-1.htm
- Çapık C. İstatistiksel güç analizi ve hemşirelik araştırmalarında kullanımı: Temel bilgiler. Anadolu Hemşirelik ve Sağlık Bilimleri Dergisi. 2014; 17(4): 268-74.
- Kang JS, Choi SY, Ryu EJ. Effects of a breastfeeding empowerment programme on Korean breastfeeding mothers: A quasi-experimental study. Int J Nurs Stud. 2008; 45(1): 14-23.
- Kuravackel GM, Ruble LA, Reese RJ, Ables AP, Rodgers AD, Toland MD. COMPASS for Hope: Evaluating the effectiveness of a parent training and support program for children with ASD. J Autism Dev Disord. 2018; 48(2): 404-16.
Toplam 36 adet kaynakça vardır.
Ayrıntılar
| Birincil Dil | Türkçe |
|---|---|
| Konular | Sağlık Kurumları Yönetimi |
| Bölüm | Araştırma Makaleleri |
| Yazarlar | |
| Proje Numarası | 2018-GAP-SABF-0005 |
| Yayımlanma Tarihi | 30 Eylül 2021 |
| Gönderilme Tarihi | 8 Ocak 2021 |
| Yayımlandığı Sayı | Yıl 2021 Cilt: 6 Sayı: 3 |
Kaynak Göster
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