The Experience of Mothers Caring for Children with Disabilities at the Persatuan Rakyat Indonesia Special School in Pekalongan, Central Java: A Phenomenological Study

Amanda Via Maulinda, Bhisma Murti, Rita Benya Adriani


Background: Disabilities are often called physical, mental and sensory disabilities or disorders that limit a person's ability to carry out daily activities. Parenting a child with a disability is not easy because the child cannot perform any activities independently and the child's behavior is not controlled. This results in a negative impact on the mother psychologically, physically and can disrupt family dynamics such as domestic violence and quarrels. This study aimed to explore the experiences of mothers caring for children with disabilities.

Subjects and Method: This was a qualitative study with a phenomenological approach, conducted at the Persatuan Rakyat Indonesia Special School (SLB) in Pekalongan, Central Java. The study subjects were selected purposively as many as four participants, namely housewives without caregivers who have children with physical disabilities, deaf-speech, and mentally retarded children. Data were collected using in-depth interview technique. The tools used in this research are camera, recording device and interview guide. Data analysis using Colaizz's method.

Results: This qualitative research resulted in seventeen themes that show the experience of mothers in caring for children with disabilities, namely destiny, mother's burden, mother's initial psychological response, emotional changes, behavioral changes, limited funds, obstacles in daily life, social stigma, financial support, social support, assistance efforts. health workers, efforts to seek other assistance, the attitude of the mother when the child conveys a choice, the attitude of the mother when the child acts inappropriately, the expectations and limitations of special health services for disability, the wisdom of spiritual improvement and bathing.

Conclusion: Mother's experience in caring for children with disabilities found unstable emotional changes, excessive worry and excessive attention. Support is very influential for mothers in the form of information support, extended family support, nuclear family and the surrounding community. During caring for children with disabilities, mothers gain wisdom, namely increasing patience and gratitude.

Keywords: Children with disabilities, experience of caring, phenomenology study.

Correspondence: Amanda Via Maulinda. Masters Program in Public Health. Universitas Sebelas Maret. Jl. Ir. Sutami 36A, Surakarta 57126, Central Java, Indonesia. Email: Mobile: 085736228812.

Journal of Maternal and Child Health (2021), 06(06): 632-641


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Alsharaydeh EA, Alqudah M, Lee RLT, Chi chan SW (2019). Challenges, coping, and resilience among immigrant parents caring for a child with a disability: an integrative review. J Nurs Scholarsh. 1–10. doi: 10.1111/jnu.12522.

Asa GA, Fauk NK, Mwanri L, Ward PR (2021). Understanding barriers to the access to healthcare and rehabilitation services: A qualitative study with mothers or female caregivers of children with a disability in Indonesia. Int. J. Environ. Res. Public Health. 18. doi: https://

Asa GA, Fauk NK, Ward PR, Mwanri L (2020). The psychosocial and economic impacts on female caregivers and fami-lies caring for children with a disability in Belu District, Indonesia. PLoS One. 15(11): 1–16. doi: 10.1371/journal.pone.0240921.

Beighton C, Wills J (2017). Are parents identifying positive aspects to parenting their child with an intellectual disability or are they just coping? A qualitative exploration. J Intellect Disabil. 21(4): 325–345. doi: 10.1177/1744629516656073.

BPS Kota Pekalongan (2021). Kota pekalongan dalam angka 2021. diunduh di cation.html pada tanggal 2 Juli 2021.

Caicedo C (2014). Families With Special Needs Children : Family health, functioning, and care burden. Am. J. Psychiatry. 20(6): 398–407. doi: 10.1177/1078390314561326.

Desriyani Y, Nurhidayah I, Adistie F (2019). Burden of parents in children with disability at sekolah luar biasa negeri Cileunyi. NurseLine journal. 4(1).

Dewi R (2017). Peran orang tua dalam proses akseptabilitas masyarakat terhadap anak penyandang tuna grahita di Kota Yogyakarta. 14(2).

Dinas Sosial Jateng. (2020). Data Terpadu Kesejahteraan Sosial Berdasarkan Pada: Kepmensos/146/HUK/2020. Retrieved March 29, 2021, from

Eickmann SH, Emond AM, Lima M (2016). Evaluation of child development: beyond the neuromotor aspect. J Pediatr. Elsevier Ltd. 92(3): S71–S83. doi: 10.-1016/j.jped.2016.01.007.

Farajzadeh A, Dehghanizadeh M, Maroufizadeh S, Amini M, Shamili A. (2021). Predictors of mental health among parents of children with cerebral palsy during the COVID-19 pandemic in Iran : A web-based cross-sectional study. J Intellect Dev Disabil.

Elsevier. 112. doi: 10.1016/j.ridd.2021.103890.

Fuentes MJ, Salas MD, Bernedo IM, Martin G (2014). Impact of the parenting style of foster parents on the behaviour problems of foster children. J Child Health Care. 41(5): 704–711. doi: 10.1111/cch-.12215.

Kementrian Pemberdayaan Perempuan dan Perlindungan Anak. (2020). Profil Anak Indonesia (S. Angraini, Ed.). Jakarta: Kemen PPPA.

Legano LA, Desch LW, Messner SA, Idzerda S, Flaherty EG (2021). Maltreatment of children with disabilities. J. Pediatr. 147(5). doi: 10.1542/peds.2021-050920.

Muller K, Brady N, Warren S, Fleming K (2020). Mothers’ perspectives on challenging behaviours in their children with fragile X syndrome. J Intellect Dev Disabil. 44(4): 481–491. doi: 10.3109/13668250.2018.1496379.

Naufal WI, Rahmandani A (2020). Penga-laman pengasuhan ibu yang memiliki anak disabilitas fisik berprestasi: sebuah studi fenomenologis deskritif (Experiences of caring for mothers of children with physical disabilities who excel: a descriptive phenomenological study). Empati. 9: 43–54.

Park H, Moss BW (2012). Parenting style, parenting stress, and children’s health-related behaviors. J Dev Behav Pediatr. 33(6): 495–503.

Rusmariana A, Muhasanah R (2021). Parenting stress orang tua yang memiliki anak retardasi Mental di SLB (Parenting stress of parents who have mentally retarded children in SLB). 1: 981–984.

Samadi AS, Mcconkey R, Bunting B (2014). Parental wellbeing of Iranian families with children who have developmental disabilities. Res Dev Disabil. Elsevier Ltd. 35(7): 1639–1647. doi: 10.1016/j.ridd.2014.04.001.

Sato N, Araki A, Ito R, Ishigaki K (2015). Exploring the beliefs of japanese mothers caring for a child with disabilities. J Fam Nurs. 21(2): 232–260. doi: 10.-1177/1074840715586551.

Sim SS, Taylor HB, Fossey E, Yu M (2021). Being more than a mother: A qualitative study of Asian immigrant mothers in Australia who have children with disabilities. Res Dev Disabil. Elsevier Ltd.117. doi: 10.1016/j.ridd.2021.104060.

Sultan B, Malik NI, Atta M (2018). Effect of social support on quality of life among orthopedically orthopedically disabled students and typical students. JPMI. 30(3): 254–8.

Syukria OA, Supriyanto S (2016). Determinan pemanfaatan puskesmas pada anak penyandang disabilitias. Administrasi Kesehatan Indonesia. 4(1).

Tigere B, Makhubele JC (2018). The experie-nces of parents of children living with disabilities at Lehlaba Protective workshop in sekhukhune district of limpopo province. Afr J Disabil. 1–9. ISSN 2226-7220. Available at:

US Children’s Bureau (2018). Child maltreatment 2018. diunduh di nts/cb/cm2018.pdf. pada tanggal 6 September 2021.

World Health Organization (2021). Deafness and hearing loss. diunduh di pada tanggal 14 September 2021.


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