Health Research, Vol. 4, Issue 2, Jun  2020, Pages 1-9; DOI: https://doi.org/10.31058/j.hr.2020.42001 https://doi.org/10.31058/j.hr.2020.42001

Physical and Psychological Burden on Caregivers of Children with Intellectual Developmental Disabilities Attending Psychiatric Outpatient – Clinic - Khartoum State - Sudan (2019)

Health Research, Vol. 4, Issue 2, Jun  2020, Pages 1-9.

DOI: https://doi.org/10.31058/j.hr.2020.42001

Amel Ahmed Hassan 1* , Abdallah Abdelrahman Mohamed 2

1 Community Health Nursing, Faculty of Nursing, Alzaiem Alazhari University, Khartoum North, Sudan

2 Psychiatrics, Faculty of Medicine, University of Khartoum, Khartoum, Sudan

Received: 20 January 2020; Accepted: 8 April 2020; Published: 19 June 2020

Full-Text HTML | Download PDF | Views 34 | Download 20

Abstract

Stresses among caregivers of children with intellectual developmental disabilities is pervasive and linked to lower quality of life, unhealthy family functioning, and negative psychological consequences. This study aimed to assess physical and psychological burden on caregivers of children with intellectual developmental disabilities. This was a descriptive cross-sectional hospitals based study conducted in Khartoum state at three outpatient psychiatric clinics which included Soba University, Omdurman Military and Altegani Almahi Hospitals. Simple random sampling method was used.  This sample included 300 caregivers of children with intellectual developmental disabilities that met selection criteria. Data was collected by the researcher using interview questionnaire and Zarit burden interview scale and analyzed by SPSS version 22. From the total of 300 caregivers, 273 (90.0%) were mothers, 274 (91.3%) of caregivers spent more than 8hours with their disabled children per day. Regarding caregivers burden, the physical burden was experienced by 102 (34.0%), while 126 (42.0%) complained of psychological burden. Family support for 154(51.3%) come from fathers of children, 273(91.0%) of them only participated in providing child needs. With respect to children with intellectual developmental disabilities 183 (61.0%) were males, disorders of 219 (73.0%) children started as early as age 0-4 years. One third of those children, 104 (34.7%) had epilepsy.  Moderate disorders were observed in135 (45.0%) of the children while in 197 (65.7%) was associated with convulsions. 112 (37.3%) were using sodium valporate for treatment while some children were using other drugs. The problem was that 187 (62.3%) had no affiliation. Chi square was used to determine the correlation between burdens and socio-demographic characteristics, where the overall burden ranged from mild to moderate (53.7%). The study concluded that the caregivers of disabled children experienced physical and psychological burden while caring for their children. Family caregivers who look after other family members need special assistance and attention; otherwise they would become totally depressed by the heavy burden.

Keywords

Caregivers, Burden, Intellectual Developmental, Disabilities

Copyright

© 2017 by the authors. Licensee International Technology and Science Press Limited. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

References

[1] Heather, J.W.; Elizabeth A.P. Family Caregivers of Adults with Intellectual and  Developmental DisabilitiesIntellectual & developmental disabilities, 2014, 52 (2)147-159, DOI: 10.1352/1934-9556-52.2.147.

[2] Vivian, E.P.; Frank, J.F. Coping and Psychological Health of Aging Parents of Adult Children with Developmental DisabilitiesAmerican Journal on Intellectual and Developmental Disabilities, 2014119(2)186-198, DOI: 10.1352/1944-7558-119.2.186.

[3] Burke, M.; Arnold, C. Identifying the Correlates and Barriers of Future Planning Among Parents of Individuals with Intellectual and Developmental Disabilities. Intellectual and developmental disabilities, 2018, 56(2), 90-100, DOI: 10.1352/1934-9556-56.2.90.

[4] ELtayeb, S.; Khalifa, D.S. Socio Economic Status of People with Disabilities in Sudan. Thesis for MD, Ahfad University for Women, Khartoum State, Sudan. Action on disability and development 2013; pp. 38.

[5] Darsana, G.M.; Suresh, V. Prevalence of caregiver burden of children with disabilitiesInternational journal of informative and futuristic research2017, 4(8), 7238-7249.

[6] Wakimizu, R.; Yamaguchi, K. Family empowerment and quality of life of parents raising children with Developmental Disabilities in 78 Japanese familiesInternational Journal of Nursing Sciences, 2017, (4), 38-45.

[7] Stewart, S.L.; Hassani, K.F. The determinants of service complexity in children with intellectual disabilitiesJournal of Intellectual Disability Research2017, 61(11), 1055-1068, DOI: 10.1111/jir.12423.

[8] Tara, L.B; Andrea N.W. Psychometric Properties of Two Measures of Crisis and Distress in Parents of Children with Intellectual and Developmental Disabilities. Journal of mental health research in intellectual disabilities, 2017, 10(1), 30-49.

[9] Bazzano, A. et al. Mindfulness Based Stress Reduction (MBSR) for Parents and Caregivers of Individuals with Developmental Disabilities. J Child Fam Stud, 2013, 24(2), DOI: 10:1007/810826-013-9836-9.

[10] Olagundoye, O.; Akuemokhan, V.; Alugo, M.  Assessing the burden of care and experience of associative stigma among caregivers of patients with chronic mental illnesses at a mental health care facility in Lagos Metropolis, NigeriaFamily medicine and primary care review, 2017, 19(2), 149-155DOI: https://doi.org/10.5114/fmpcr.2016.67124.

[11] Maheswari, K. Burden of the Care Givers of Mentally Retarded ChildrenJournal of Humanities &Social Science, 2014, 19(7), 06-08.

[12] Singh, K.; Kumar, R. Study of burden in parents of children with mental retardation. Journal of Indian health psychology, 2014, 8(2), 9. Available online: https://www.researchgate.net/publication/263852444 (accessed on 31 December 2020).

[13] Catthoor, K.; Schrijvers, D. Associative stigma in family members with psychotic patients in FlandersWorld J psychiatry, 2015, 5(1), 118-125, DOI: 10.5498/wjp.v5.11.118.

[14] Yu, J.; Yap, P.; Tau, M.L. The optimal short version of the Zarit Burden Interview for dementia caregivers: diagnostic utility and externally validated cutoffsAging and Mental Health, 2018, 706-710, DOI: 10.1080/13607863.2018.1450841.

[15] Seng, B.K. Validity and Reliability of the Zarit Burden Interview in Assessing Care giving BurdenAnnual of the Academy of Medicine, Singapore, 2014, 39(10), 758- 763.

[16] Jenny, L.D.; Manago, B. Motherhood and Associative Moral Stigma. Stigma and Health, 2017, 1(2), 72-86.

[17] Mandleco, B.; Freeborn, D. Caregiver Burden and Sibling Relationships in Families Raising Children with Disabilities and Typically Developing ChildrenJournal of Family Psychology, 2014, 32(2), 241-246.

[18] FairthorneJ.; De Klerk, N.; LeonardH. Brief Report: Burden of Care in Mothers of Children with Autism Spectrum Disorder or Intellectual DisabilityJ Autism Dev Disord, 2015, 46, 1103-1109.

[19] Heller, T.; Gibbons, H.M. Care giving and Family Support Interventions: Crossing Networks of Aging and Developmental Disabilities. Intellectual and developmental disabilities, 2015, 53(5), 329-345.

[20] Kerenhappachu, M.S.; Godishala, S. Care Giver’s Burden and Perceived Social Support in Mothers of Children with Mental RetardationInternational Journal of Scientific and Research Publications, 2014, 4(4), 1-7.