Quality of Life and Subjective Burden on Family Caregiver of Children with Autism
American Journal of Nursing Science
Volume 6, Issue 1, February 2017, Pages: 33-39
Received: Nov. 29, 2016; Accepted: Dec. 8, 2016; Published: Jan. 23, 2017
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Authors
Omaima Ezzat, Mental Health & Psychiatric Nursing, Nursing Faculty, Beni-Suef University, Beni–Suef, Egypt
Magda Bayoumi, Medical Surgical Nursing, Nursing Faculty, Beni -Suef University, Beni–Suef, Egypt
Osama A Samarkandi, Nursing Informatics, Prince Sultan College for Emergency Medical Services, King Saud University, Riyadh, KSA
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Abstract
Background: Caring for children with autism has been affected on caregivers’ health outcome and cause high stress levels and health disturbance on family caregiver. Aim: the main aim of the present study was to assess the quality of life and subjective burden on family caregiver of children with autism. Methods: A quasi-experimental design was carried out in the primary and preparatory school in Beni-Suef City from November 2015 to January 2016. Data were obtained from a total of 86 caregivers, 36 caregivers as interventional group and 50 caregivers as control group were interviewed by using Zarit Burden Interview (ZBI) and QoL.SF 36-item. Results: All caregivers in the study and control group were female; they also had the same age. The findings reported a significant difference between caregivers of autistic and control groups in burden levels, and around half of autistic caregivers (47.2%) have sever level. Moreover autistic caregivers reported significantly lower quality-of-life, compared with control group in physical functioning and energy/fatigue. Conclusion: caregivers of children with autism show higher levels of burden and lower level of QoL compared to control group. Thus further research is needed to identify coping strategies that can decrease overall burden on family caregiver.
Keywords
Quality of Life, Subjective Burden, Family Caregiver, Autism
To cite this article
Omaima Ezzat, Magda Bayoumi, Osama A Samarkandi, Quality of Life and Subjective Burden on Family Caregiver of Children with Autism, American Journal of Nursing Science. Vol. 6, No. 1, 2017, pp. 33-39. doi: 10.11648/j.ajns.20170601.15
Copyright
Copyright © 2017 Authors retain the copyright of this article.
This article is an open access article distributed under the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/) which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
References
[1]
American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 4th ed. Text Revision (DSM-IV-TR). Washington, DC: American Psychiatric Publishing; 2000.
[2]
Rogers C, Lepherd L, Ganguly R, Jacob-Rogers S. Perinatal issues for women with high functioning autism spectrum disorder. Women Birth. 2016 Oct 14. pii: S1871-5192(16)30128-7.
[3]
Geoffray MM, Thevenet M, Georgieff N. News in early intervention in autism. Psychiatr Danub. 2016 Sep; 28 (Suppl-1): 66-70.
[4]
Wolff S. The history of autism. Eur Child Adolesc Psychiatry. 2004 Aug; 13 (4): 2018.
[5]
Charnsil C, Bathia M. prevalence of depressive disorders among caregivers of children with autism in Thailand. ASEAN Journal of Psychiatry, 2010 Vol. 11 (1) 1-9.
[6]
Mendoza R. The Economics of Autism in Egypt. Am. J. of Economics and Business Administration 2 (1): 12-19, 2010.
[7]
Fombonne, E., 2003. Epidemiological surveys of autism and other pervasive developmental disorders: An update. J. Autism Dev. Disorders, 33: 365-382.
[8]
Higgins DJ, Bailey SR, Pearce JC. Factors associated with functioning style and coping strategies of families with a child with an autism spectrum disorder. Autism 2005; 9: 125-37.
[9]
Sivberg B. Coping strategies and parental attitudes, a comparison of parents with children with autistic spectrum disorders and parents with non-autistic children. Int J Circumpolar Health 2002; 61 (Suppl 2): 36-50.
[10]
Weiss MJ. Harrdiness and social support as predictors of stress in mothers of typical children, children with autism, and children with mental retardation. Autism 2002; 6: 115-30.
[11]
Yirmiya N, Shaked M. Psychiatric disorders in parents of children with autism: a meta-analysis. J Child Psychol Psychiatry 2005; 46: 69-83.
[12]
Tarabek J. Relationship satisfaction and mental health of parents of children with autism: acomparison of autism, ADHD, and normative children [thesis]. Blacksburg, VA: Faculty of the Virginia Polytechnic Institute and State University; 2011.
[13]
Raina P, O’Donnell M, Schwellnus H, Rosenbaum P, King G, Brehaut J, et al. Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC Pediatr 2004; 4: 1.
[14]
Stuart M, McGrew JH. Caregiver burden after receiving a diagnosis of an autism spectrum disorder. Res Autism Spectr Disord 2009; 3: 86-97.
[15]
The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med. 1995 Nov; 41 (10): 1403-9.
[16]
Bayoumi M. life style modifications toward improving quality of life and reducing burden on faily caregiver: development of new nursing theory. Proceeding Scientific booklet, international conference of nursing science, Bioleagues, 1-3/11/2016.
[17]
Braithwaite V. Caregiving burden, making the concept scientifically useful and policy relevant. Research on Aging. 1992; 14 (1): 3-27.
[18]
Zarit SH, Reever KE, Bach-Peterson J. Relatives of the Impaired Elderly: Correlates of Feelings of Burden. The Gerontologist. 1980; 20 (6): 649-55.
[19]
ZBI 12 items: Bédard M, Molloy DW, Squire L, Dubois S, Lever JA, O’Donnell M. The Zarit Burden Interview: A new short version and screening version. The Gerontologist 2001; 41: 652-657.
[20]
Bayoumi M. Subjective Burden on Family Carers of Hemodialysis Patients. Open Journal of Nephrology, 2014, 4, 79-85.
[21]
Hays R. D & Shapiro M. F. An Overview of genetic Health Related Quality of Life measures for HIV. Research, Quality of life research, 1992; 1: 91-97.
[22]
Tessler RC, Gamache GM. Family experiences with mental illness. 1st ed. Westport: Auburn House; 2000.
[23]
Lerthattasilp T, Charernboon T, Chunsuwan I, Siriumpunkul P. Depression and Burden among Caregivers of Children with Autistic Spectrum Disorder. J Med Assoc Thai, 2015; Vol. 98 Suppl. 2: 45-52.
[24]
Mugno D, Ruta L, D’Arrigo VG, Mazzone L. Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health Qual Life Outcomes 2007; 5: 22.
[25]
Lin Y, Orsmond L G. Maternal well-being and lifespan issues of autism in Taiwanese families of adolescents and adults with autism spectrum disorders. The 18th Asian conference on mental retardation; 18-23 November 2007 Taipei, Taiwan; 2007: 618-28.
[26]
Toonsiri C, Sunsern R, Lawand W. Developmental of the burden interview for caregivers of patients with chronic illness. J Nurs Educ 2011; 4: 62-75.
[27]
Amendola F, Oliveira MAC, Alvarenga MRM. Qualidade de vida dos cuidadores de pacientes dependentes no programa de saúde da família. Texto Contexto Enferm. 2008; 17 (2): 266-72.
[28]
Misquiatti A, Brito M, Ferreira F, Junior F. Family Burden And Children With Autism Spectrum Disorders: Perspective Of Caregivers. Rev. CEFAC. 2015 Jan-Fev; 17 (1): 192-200.
[29]
Ganjiwale D, Ganjiwale J, Sharma B, Mishra B. Quality of life and coping strategies of caregivers of children with physical and mental disabilities. J Family Med Prim Care. 2016 Apr-Jun; 5 (2): 343-348.
[30]
Hoefman R, Payakachat N, van Exel J, Kuhlthau K, Kovacs E, Pyne J, Tilford JM. Caring for a child with autism spectrum disorder and parents' quality of life: application of the CarerQol. J Autism Dev Disord. 2014 Aug; 44 (8): 1933-45.
[31]
Strock, M. Autism spectrum disorders (pervasive developmental disorders). Bethesda: National Institute of Mental Health (NIMH); 2007.
[32]
Giallo R, Wood CE, Jellett R, Porter R. Fatigue, wellbeing and parental self-efficacy in mothers of children with an autism spectrum disorder. Autism. 2013; 17: 465–480.
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