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FETAL ALCOHOL SPECTRUM DISORDERS (FASD) IN THE CONTEXT OF QUALITY OF LIFE OF THE CHILD AND HIS/HER CAREGIVERS

Yıl 2022, Cilt: 8 Sayı: 22, 17 - 29, 07.05.2022

Petra Mitašíková , Barbora Vodičková

https://doi.org/10.18769/ijasos.1070749
Cited By: 1

Öz

The present article defines fetal alcohol spectrum disorders (FASD), describes the aetiology, prevalence, manifestations, and consequences of FASD impacting the quality of life of individuals and their families, diagnostic, intervention approaches, and emphasises prevention. Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term covering a group of congenital neurodevelopmental defects and brain damage resulting from prenatal alcohol exposure (PAE). It is a continuum of bio-psycho-social impacts associated with PAE. There are multiple approaches to diagnosing and treating disorders associated with prenatal alcohol exposure during pregnancy worldwide. All persons with FASD have lifelong cognitive, social, and behavioural difficulties. Individuals with FASD present multidimensional challenges in childhood for parents and caregivers, with an impact on other family members. For this reason, families also need support from society. Evidence-based interventions need to be implemented to support individuals with FASD and their families. Addressing this issue requires a multidisciplinary professional approach. FASD is a costly issue for society, so it is reasonable to invest in significant prevention. Our qualitative research mapped the positive and negative influences on the quality of life of child with FASD and his/her caregivers/parents. We found that the negative aspects affecting the quality of life of the child with FASD and his/her caregivers/parents include: Significant manifestations of behavioural problems of the child with FASD in the school and home environment; Early traumatisation and re-traumatisation of the child with FASD; Disrupted relational bond between the caregiver/parent and the child with FASD and Negative impact of parenting a child with FASD on the mental and physical health of the caregiver/parent. We identified the following positive resources supporting the quality of life of the child with FASD and his/her caregivers/parents: Professional support as one aspect of enhancing the quality of life of the child with FASD and his/her caregivers/parents; Compensating for the learning difficulties of the child with FASD in the home environment; Consciously establishing a secure relational bond between the caregiver/parent and the child with FASD; Alternative teaching approaches to the child with FASD in school as a positive influencing factor. The topic of the quality of life of a child with FASD and his/her caregivers/parents is not sufficiently explored in the Slovak and international context. It is about the interconnected links between the child's situation with FASD himself/herself and the impact on his/her whole ecosystem (home environment, parents, siblings, school and broader community). This study presents pilot data on the quality of life of children diagnosed with FASD and their caregivers/parents in Slovakia. The research was supported by a grant Kega No. 002UK-4/2020 Supporting the child with sensory processing disorder through a multisensory environment.

Anahtar Kelimeler

fetal alcohol spectrum disorders (FASD) prenatal alcohol exposure (PAE) quality of life (QoL)

Destekleyen Kurum

Comenius University

Proje Numarası

The research was supported by a grant Kega No. 002UK-4/2020 Supporting the child with sensory processing disorder through a multisensory environment.

Kaynakça

  • Astley, S. J. (2004). Diagnostic Guide for Fetal Alcohol Spectrum Disorders: The 4-Digit Diagnostic Code Third Edition. Center on Human Development and Disability School of Public Health and Community Medicine University of Washington Seattle.
  • Aktualizácia Národného akčného plánu pre problémy s alkoholom na roky 2013 – 2020. (2007) Bratislava. https://www.uvzsr.sk/docs/info/podpora/Aktualizacia_Narodneho_akcneho_planu_pre_problemy_s_alkoholom_na_roky_2013_2020.pdf
  • Brehaut, J. C., Kohen, D. E., Raina, P., Walter, S.D., Russell, D.J., Swinton, M., O'Donnell, M., Rosenbaum, P. (2004).The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? Pediatrics. 114(2),182-91. https://doi: 10.1542/peds.114.2.e182
  • Brown, J., Mather, M. (2020). Ako byť rodičom dieťaťa s FASD. Bratislava : Fascinujúce deti, oz. Návrat, oz.
  • Carnevale, F. A., Alexander, E., Davis, M., Rennick, J., Troini, R. (2006). Daily living with distress and enrichment: the moral experience of families with ventilator-assisted children at home. Pediatrics.;117(1), e48-60. https://doi: 10.1542/peds.2005-07894
  • Center for Substance Abuse Prevention (US). (2014). (Addressing Fetal Alcohol Spectrum Disorders (FASD). Rockville (MD): Substance Abuse and Mental Health Services Administration (US); Treatment Improvement Protocol (TIP) Series, No. 58. Executive Summary. Available 0789. from: https://www.ncbi.nlm.nih.gov/books/NBK344248/
  • Eiser C., Morse R. (2001). Quality-of-life measures in chronic diseases of childhood. Health Technol Assess, 5(4),1-157. https://doi: 10.3310/hta5040
  • Elbers J., Jaradeh S., Yeh A. M., Golianu B. (2018). Wired for Threat: Clinical Features of Nervous System Dysregulation in 80 Children. Pediatr Neurol. 2018 Dec; 89:39-48. https://doi: 10.1016/j.pediatrneurol.2018.07.007.
  • Denny, L., Coles, S., & Blitz, R. (2017). Fetal Alcohol Syndrome and Fetal Alcohol Spectrum Disorders. American Family Physician, 96(8), 515-522A. https://pubmed.ncbi.nlm.nih.gov/29094891/
  • Domeij, H. et al. (2018). Experiences of living with fetal alcohol spectrum disorders: a systematic review and synthesis of qualitative data. Developmental Medicine and Child Neurology. (60),8, 741-752. https://onlinelibrary.wiley.com/doi/10.1111/dmcn.13696
  • Gavora, P. (2006). Sprievodca metodológiou kvalitatívneho výskumu. Bratislava: Regent.
  • Gavora, P. et al. (2010). Elektronická učebnica pedagogického výskumu [online]. Bratislava : Univerzita Komenského. http://www.emetodologia.feu.uniba.sk/
  • Ha, J. H., Greenberg, J. S., & Seltzer, M. M. (2011). Parenting a Child with a Disability: The Role of Social Support for African American Parents. Families in society : the journal of contemporary human services, 92(4), 405–411. https://doi.org/10.1606/1044-3894.4150
  • Habalová, M. (2010). Zdroje reziliencie rodín detí so znevýhodnením a úlohy včasnej intervencie pri jej posilňovaní. In Horňáková, M. (ed.), Včasná intervencia orientovaná na rodinu. Bratislava: Univerzita Komenského v Bratislave.
  • Hendl, J. (2005). Kvalitativní výzkum: základní teorie, metody a aplikace. Praha: Portál.
  • Heráková, K. (2010). Začiatok neobyčajného rodičovstva. In: Horňáková, M. (ed.) Včasná intervencia orientovaná na rodinu. Bratislava : Univerzita Komenského v Bratislave, 2010. s. 62-67. ICD10. https://icdlist.com/icd-10/Q86.0
  • Janušková, E., Janoško, P. (2021). Výzvy a prekážky súčasného otcovstva. In Revue liečebnej pedagogiky, 14 (1), 29-39. Kaščáková, N., Bednaříková H., Dobrotková, A., Petríková, M., Hašto, J., Tavel, P. (2020).Traumatizácia v detstve a zdravie v dospelosti. PSYCHIATRIA-PSYCHOTERAPIA-PSYCHOSOMATIKA, 27 (2), 6 – 15.
  • Kotrbová, K., Majzlanová, K. (2021). Therapeutic diary in bibliotherapy. In Problems of education and teaching in the era of digital society. Collection of scientific articles. European Scientific e-Journal, 2 (008), 28-51.
  • Lange, S., Probst, C., Gme, l. G., Rehm, J., Burd, L., Popova, S. (2017). Global Prevalence of Fetal Alcohol Spectrum Disorder Among Children and Youth: A Systematic Review and Meta-analysis. JAMA Pediatr. 171(10), 948-956. https://doi: 10.1001/jamapediatrics.2017.1919.
  • Mattson, S. N., Crocker, N., & Nguyen, T., T. (2011). Fetal alcohol spectrum disorders: neuropsychological and behavioral features. Neuropsychology review, 21(2), 81–101. https://doi.org/10.1007/s11065-011-9167.
  • Mihai, S. I., Mane, K. H., Kachhap, S. (2018). Disability & quality of life of children with special needs: an interpretative phenomological analysis. European Journal of Special Education Research, [S.l.], nov. 2018. https://dx.doi.org/10.46827/ejse.v0i0.2066.
  • Millians, M. N. (2015) Educational Needs and Care of Children with FASD. Curr.Dev.Disord.Rep., 2 (sep, 2015), 210-218. https://doi.org/10.1007/s40474-015-0055-5
  • Olson, H.C., Oti , R., Gelo, J., Beck, S. (2009). "Family matters:" fetal alcohol spectrum disorders and the family. Dev Disabil Res Rev. 15(3), 235-49. https://doi: 10.1002/ddrr.65
  • Poškodenie zdravia konzumáciou alkoholu v Slovenskej republike. (2019). https://data.nczisk.sk/statisticke_vystupy/Poskodenie_zdravia_konzumaciou_alkoholu/Poskodenia_zdravia_konzumaciou_alkoholu_v_SR_2019_Sprava_k_publikovanym_vystupom.pdf
  • Raina, P., O'Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S. D., Russell, D., Swinton, M., Zhu, B., Wood, E. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics,115(6), e626-36. https://doi: 10.1542/peds.2004-1689 Reid, N., Moritz, K. M. (2019). Caregiver and family quality of life for children with fetal alcohol spectrum disorder. Research in Developmental Disabilities. Volume 94, November 2019. https:// DOI: 10.1016/j.ridd.2019.103478
  • Riley, E. P., Infante, M. A., & Warren, K. R. (2011). Fetal alcohol spectrum disorders: an overview. Neuropsychology review, 21(2), 73–80. https://doi.org/10.1007/s11065-011-9166-x
  • Stade, B.C., Stevens, B., Ungar, W. J. et al. (2006). Health-related quality of life of Canadian children and youth prenatally exposed to alcohol. Health Qual Life Outcomes 4 (81). https://doi.org/10.1186/1477-7525-4-81
  • Stop alkoholu v těhotenství. (2020). Mezinárodní den fetálního alkoholového syndromu. 2. lékařská fakulta Univerzita Karlova, Praha. Vydané 8. 9. 2020.
  • Vorgias, D., Bernstein, B. (2021). Fetal Alcohol Syndrome In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing. https://www.ncbi.nlm.nih.gov/books/NBK448178/
  • World Health Organization (1948). Constitution of the World Health Organization basic document. Geneva, Switzerland: World Health Organization.
  • Yamaoka, Y., Tamiya, N., Moriyama, Y., Sandoval Garrido F., A., Sumazaki, R., Noguchi, H. (2015). Mental Health of Parents as Caregivers of Children with Disabilities: Based on Japanese Nationwide Survey. PLoS ONE 10(12), e0145200. https://doi.org/10.1371/journal.pone.0145200
  • Widyawati, Y., Otten, R., Kleemans,T. & Scholte,R. H. J. (2020). Parental Resilience and the Quality of Life of Children with Developmental Disabilities in Indonesia, International Journal of Disability, Development and Education, https://DOI: 10.1080/1034912X.2020.1834078

Yıl 2022, Cilt: 8 Sayı: 22, 17 - 29, 07.05.2022

Petra Mitašíková , Barbora Vodičková

https://doi.org/10.18769/ijasos.1070749
Cited By: 1

Öz

Proje Numarası

The research was supported by a grant Kega No. 002UK-4/2020 Supporting the child with sensory processing disorder through a multisensory environment.

Kaynakça

  • Astley, S. J. (2004). Diagnostic Guide for Fetal Alcohol Spectrum Disorders: The 4-Digit Diagnostic Code Third Edition. Center on Human Development and Disability School of Public Health and Community Medicine University of Washington Seattle.
  • Aktualizácia Národného akčného plánu pre problémy s alkoholom na roky 2013 – 2020. (2007) Bratislava. https://www.uvzsr.sk/docs/info/podpora/Aktualizacia_Narodneho_akcneho_planu_pre_problemy_s_alkoholom_na_roky_2013_2020.pdf
  • Brehaut, J. C., Kohen, D. E., Raina, P., Walter, S.D., Russell, D.J., Swinton, M., O'Donnell, M., Rosenbaum, P. (2004).The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? Pediatrics. 114(2),182-91. https://doi: 10.1542/peds.114.2.e182
  • Brown, J., Mather, M. (2020). Ako byť rodičom dieťaťa s FASD. Bratislava : Fascinujúce deti, oz. Návrat, oz.
  • Carnevale, F. A., Alexander, E., Davis, M., Rennick, J., Troini, R. (2006). Daily living with distress and enrichment: the moral experience of families with ventilator-assisted children at home. Pediatrics.;117(1), e48-60. https://doi: 10.1542/peds.2005-07894
  • Center for Substance Abuse Prevention (US). (2014). (Addressing Fetal Alcohol Spectrum Disorders (FASD). Rockville (MD): Substance Abuse and Mental Health Services Administration (US); Treatment Improvement Protocol (TIP) Series, No. 58. Executive Summary. Available 0789. from: https://www.ncbi.nlm.nih.gov/books/NBK344248/
  • Eiser C., Morse R. (2001). Quality-of-life measures in chronic diseases of childhood. Health Technol Assess, 5(4),1-157. https://doi: 10.3310/hta5040
  • Elbers J., Jaradeh S., Yeh A. M., Golianu B. (2018). Wired for Threat: Clinical Features of Nervous System Dysregulation in 80 Children. Pediatr Neurol. 2018 Dec; 89:39-48. https://doi: 10.1016/j.pediatrneurol.2018.07.007.
  • Denny, L., Coles, S., & Blitz, R. (2017). Fetal Alcohol Syndrome and Fetal Alcohol Spectrum Disorders. American Family Physician, 96(8), 515-522A. https://pubmed.ncbi.nlm.nih.gov/29094891/
  • Domeij, H. et al. (2018). Experiences of living with fetal alcohol spectrum disorders: a systematic review and synthesis of qualitative data. Developmental Medicine and Child Neurology. (60),8, 741-752. https://onlinelibrary.wiley.com/doi/10.1111/dmcn.13696
  • Gavora, P. (2006). Sprievodca metodológiou kvalitatívneho výskumu. Bratislava: Regent.
  • Gavora, P. et al. (2010). Elektronická učebnica pedagogického výskumu [online]. Bratislava : Univerzita Komenského. http://www.emetodologia.feu.uniba.sk/
  • Ha, J. H., Greenberg, J. S., & Seltzer, M. M. (2011). Parenting a Child with a Disability: The Role of Social Support for African American Parents. Families in society : the journal of contemporary human services, 92(4), 405–411. https://doi.org/10.1606/1044-3894.4150
  • Habalová, M. (2010). Zdroje reziliencie rodín detí so znevýhodnením a úlohy včasnej intervencie pri jej posilňovaní. In Horňáková, M. (ed.), Včasná intervencia orientovaná na rodinu. Bratislava: Univerzita Komenského v Bratislave.
  • Hendl, J. (2005). Kvalitativní výzkum: základní teorie, metody a aplikace. Praha: Portál.
  • Heráková, K. (2010). Začiatok neobyčajného rodičovstva. In: Horňáková, M. (ed.) Včasná intervencia orientovaná na rodinu. Bratislava : Univerzita Komenského v Bratislave, 2010. s. 62-67. ICD10. https://icdlist.com/icd-10/Q86.0
  • Janušková, E., Janoško, P. (2021). Výzvy a prekážky súčasného otcovstva. In Revue liečebnej pedagogiky, 14 (1), 29-39. Kaščáková, N., Bednaříková H., Dobrotková, A., Petríková, M., Hašto, J., Tavel, P. (2020).Traumatizácia v detstve a zdravie v dospelosti. PSYCHIATRIA-PSYCHOTERAPIA-PSYCHOSOMATIKA, 27 (2), 6 – 15.
  • Kotrbová, K., Majzlanová, K. (2021). Therapeutic diary in bibliotherapy. In Problems of education and teaching in the era of digital society. Collection of scientific articles. European Scientific e-Journal, 2 (008), 28-51.
  • Lange, S., Probst, C., Gme, l. G., Rehm, J., Burd, L., Popova, S. (2017). Global Prevalence of Fetal Alcohol Spectrum Disorder Among Children and Youth: A Systematic Review and Meta-analysis. JAMA Pediatr. 171(10), 948-956. https://doi: 10.1001/jamapediatrics.2017.1919.
  • Mattson, S. N., Crocker, N., & Nguyen, T., T. (2011). Fetal alcohol spectrum disorders: neuropsychological and behavioral features. Neuropsychology review, 21(2), 81–101. https://doi.org/10.1007/s11065-011-9167.
  • Mihai, S. I., Mane, K. H., Kachhap, S. (2018). Disability & quality of life of children with special needs: an interpretative phenomological analysis. European Journal of Special Education Research, [S.l.], nov. 2018. https://dx.doi.org/10.46827/ejse.v0i0.2066.
  • Millians, M. N. (2015) Educational Needs and Care of Children with FASD. Curr.Dev.Disord.Rep., 2 (sep, 2015), 210-218. https://doi.org/10.1007/s40474-015-0055-5
  • Olson, H.C., Oti , R., Gelo, J., Beck, S. (2009). "Family matters:" fetal alcohol spectrum disorders and the family. Dev Disabil Res Rev. 15(3), 235-49. https://doi: 10.1002/ddrr.65
  • Poškodenie zdravia konzumáciou alkoholu v Slovenskej republike. (2019). https://data.nczisk.sk/statisticke_vystupy/Poskodenie_zdravia_konzumaciou_alkoholu/Poskodenia_zdravia_konzumaciou_alkoholu_v_SR_2019_Sprava_k_publikovanym_vystupom.pdf
  • Raina, P., O'Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S. D., Russell, D., Swinton, M., Zhu, B., Wood, E. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics,115(6), e626-36. https://doi: 10.1542/peds.2004-1689 Reid, N., Moritz, K. M. (2019). Caregiver and family quality of life for children with fetal alcohol spectrum disorder. Research in Developmental Disabilities. Volume 94, November 2019. https:// DOI: 10.1016/j.ridd.2019.103478
  • Riley, E. P., Infante, M. A., & Warren, K. R. (2011). Fetal alcohol spectrum disorders: an overview. Neuropsychology review, 21(2), 73–80. https://doi.org/10.1007/s11065-011-9166-x
  • Stade, B.C., Stevens, B., Ungar, W. J. et al. (2006). Health-related quality of life of Canadian children and youth prenatally exposed to alcohol. Health Qual Life Outcomes 4 (81). https://doi.org/10.1186/1477-7525-4-81
  • Stop alkoholu v těhotenství. (2020). Mezinárodní den fetálního alkoholového syndromu. 2. lékařská fakulta Univerzita Karlova, Praha. Vydané 8. 9. 2020.
  • Vorgias, D., Bernstein, B. (2021). Fetal Alcohol Syndrome In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing. https://www.ncbi.nlm.nih.gov/books/NBK448178/
  • World Health Organization (1948). Constitution of the World Health Organization basic document. Geneva, Switzerland: World Health Organization.
  • Yamaoka, Y., Tamiya, N., Moriyama, Y., Sandoval Garrido F., A., Sumazaki, R., Noguchi, H. (2015). Mental Health of Parents as Caregivers of Children with Disabilities: Based on Japanese Nationwide Survey. PLoS ONE 10(12), e0145200. https://doi.org/10.1371/journal.pone.0145200
  • Widyawati, Y., Otten, R., Kleemans,T. & Scholte,R. H. J. (2020). Parental Resilience and the Quality of Life of Children with Developmental Disabilities in Indonesia, International Journal of Disability, Development and Education, https://DOI: 10.1080/1034912X.2020.1834078
Toplam 32 adet kaynakça vardır.

Ayrıntılar

Birincil Dil İngilizce
Bölüm Makaleler
Yazarlar

Petra Mitašíková

Barbora Vodičková 0000-0002-2193-0405

Proje Numarası The research was supported by a grant Kega No. 002UK-4/2020 Supporting the child with sensory processing disorder through a multisensory environment.
Yayımlanma Tarihi 7 Mayıs 2022
Gönderilme Tarihi 9 Şubat 2022
Yayımlandığı Sayı Yıl 2022Cilt: 8 Sayı: 22

Kaynak Göster

EndNote Mitašíková P, Vodičková B (01 Mayıs 2022) FETAL ALCOHOL SPECTRUM DISORDERS (FASD) IN THE CONTEXT OF QUALITY OF LIFE OF THE CHILD AND HIS/HER CAREGIVERS. IJASOS- International E-journal of Advances in Social Sciences 8 22 17–29.

Cited By

Craniofacial and other typical deficits in children with Foetal Alcohol Syndrome - FAS in the context of Foetal Alcohol Spectrum Disorders
Listy klinické logopedie
https://doi.org/10.36833/lkl.2023.012
 Kapak Resmi İndir

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