Family Caregiver Phenomenon that Treats Persons with Disabilities Since Birth

Halawiah Wia Musi(1*)

(1) Universitas Gadjah Mada
(*) Corresponding Author


Background: Disability is a disturbance or limitation of physical activity involving participation restrictions. The disturbance is a problem in the body’s function and its structure. Restrictions on physical activity are the difficulties faced in performing tasks or actions, while limiting participation is a problem experienced by individuals in engagement in life situations. Objective: This study aimed to provide an in-depth description of the feelings, explain the obstacles or difficulties experienced and explain the caregiver’s expectations of mothers/fathers/brothers in caring for children with disabilities from birth. Method: This study was a qualitative research with a descriptive phenomenology approach. Data collection was conducted through in-depth interviews of family caregivers of persons with disabilities since birth with inclusion and exclusion criteria. The data were analyzed by Colaizzi’s method and data triangulation was performed by a coder to maintain data validation. The sample selection was done by purposive sampling. The sample of the study amounted to 17 persons who were family caregivers. Result: The results showed that caregiver phenomenon in caring for persons with disabilities since birth is a burden. Psychological burdens include sadness, disappointment, anger, guilt, depression and ultimately acceptance. Additionally, there are financial burdens, time constraints and social stigma. Conclusions: Caregivers for persons with disabilities since birth experience several burdens, including psychological, physical, financial and social burdens. There is the psychological burden of anger, disappointment, fear, worry, and guilt which many finally can accept. The physical burden of fatigue, lack of sleep, lack of appetite may result in diseases such as gastritis, hypertension, along with muscle and joint disorders. Financial burdens are related to medical expenses, transportation, and daily necessities. The social burden involves stigma, negative labeling and lack of time with other families and communities. It is hoped all caregivers with family and community support can accept and overcome these challenges.


caregiver, experience, persons with disabilities, stigma, labeling

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1. World Health Organization. World Report on Disability. Geneva: World Health Organization; 2011. Available from: https://www.who. int/disabilities/world_report/ 2011/report.pdf

2. World Health Organization. WHOQOL: Measuring Quality of Life. Geneva: World Health Organization; 2004. Available from: https://

3. Central Statistics Agency. National socioeconomic survey 2012. Jakarta: Central Statistics Agency; 2012.

4. Social Services of Purworejo Regency. Data of people with social welfare problems Purworejo Regency 2016. Purworejo: Social Services of Purworejo Regency; 2016.

5. Griffin EM. A First Look at Communication Theory. 5th ed. New York: McGraw-Hill; 2003.

6. Somantri TS. Psychology of the Extraordinary Child. Bandung: Refika Aditama; 2007.

7. Kung WW. The illness, stigma, culture, or immigration?: burdens on Chinese American caregivers of patients with schizophrenia. Families in Society. 2003; 84(4): 547-57.

8. Kübler-Ross E. On Death and Dying. London: Routledge; 1969.

9. Zainuddin AF. Spiritual Emotional Freedom technique (S-EFT). Jakarta: Afzan Publishing; 2009.

10. Sukmarini N. Optimizing the role of caregivers in the management of schizophrenia. Bandung: Psychiatric Magazine. 2009; 42(1): 58-61.

11. Son AHK. Social insurance programs in South Korea and Taiwan: a historical overview. Uppsala: Department of Economic History Uppsala Universitet; 2002.

12. Gupta A, Singhal N. Positive perceptions in parents of children with disabilities. Asia Pacific Disability Rehabilitation Journal. 2004; 15(1): 22-35.

13. Marrón EM, Redolar-Ripol D, Boixadós M, Nieto R, Guillamón N, Hernández E, Gómez B. Burden on caregivers of children with cerebral palsy: predictors and related factors. Universitas Psychologica. 2013; 12(3): 767-77.

14. Wardhani MK, Rahayu MS, Roasiana D. The relationship between “personal adjustment” with acceptance of children with special needs in RSUD X. Proceeding of SNaPP: Sosial, Ekonomi dan Humaniora. 2012; 3(1): 49-54.

15. Republic of Indonesia. Act number 8 of 2016 regarding persons with disabilities. Republic of Indonesia State Gazette of 2016 Number 69. Jakarta: State Secretariat; 2016.

16. Beanlands H, Horsburgh ME, Fox S, Howe A. Caregiving by family and friends of adults receiving dialysis. Nephrology Nursing Journal. 2005; 32(6): 621-31.

17. Goleman D. Emotional Intelligence (translation). Jakarta: Gramedia Pustaka Utama; 2000.

18. Hurlock EB. Child Development. New York: McGraw-Hill; 1999.

19. Claramita M, Susilo AP, Rosenbaum M, van Dalen J. Communication of health workers and patients in the context of Southeast Asian culture. Jakarta: EGC; 2016.

20. Nuraenah N, Mustikasari M, Putri YSE. Relationship of family support to the burden of family caring for family members with a history of violent behavior at the Klender Islamic Mental Hospital, East Jakarta. Journal of Nursing Mental. 2014; 2(1): 41-50.

21. Parish SL, Cloud JM. Financial well-being of young children with disabilities and their families. Social Work. 2006; 51(3): 223-32.


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