Empowering and Equipping Parents with the Basic Intervention Skills in Handling their Children with Special Learning Needs
Abstract:
Parents of children with special learning needs face challenges balancing family needs without sacrificing care. For remote communities, difficulty accessing support compounds struggles. This qualitative phenomenological study explored an extension intervention program's effectiveness empowering parents of children with special needs. Through interviews with participating parents, thematic analysis revealed the program helped in three key empowerment dimensions. Firstly, parents transitioned from limited disability understanding to increased knowledge through educational resources. Secondly, feelings of isolation changed to supportive social networks via connections. Finally, the program equipped parents with resilience skills/mindsets moving from hopelessness towards effective coping. The multidimensional model addressed interrelated cognitive, social and emotional issues impacting parenting. Findings provide valuable insights how holistic, community programs successfully empower/support these families. Further research understands long term impacts and relationships to child outcomes.
Keywords: Coping skills, Disability intervention, Family-centered care, Parental empowerment, Resilience, Special needs children
References:
[1] Chen, S., Chen, S., Li, X., & Ren, J. (2020). Mental health of parents
of special needs children in China during the COVID-19 pandemic. International
Journal of Environmental Research and Public Health, 24(17), 9519. https://doi.org/10.3390/ijerph17249519.
[2] Marlina, S. (2018). Dokter Lubis program. Review of Primary Care Practice
and Education (Kajian Praktik dan Pendidikan Layanan Primer), 1(2), 6.
https://doi.org/10.22146/rpcpe.33816.
[3] Wright, A.C., & Taylor, S. (2014). Advocacy by parents of young children
with special needs: Activities, processes, and perceived effectiveness. Journal
of Social Service Research, 5(40), 591 - 605. https://doi.org/10.1080/01488376.2014.896850.
[4] Azis, F., & Mukramin, S. (2020). The family decision making patterns of
children with special needs: A sociology study of the family. AL MA’ARIEF: Jurnal
Pendidikan Sosial dan Budaya, 2(2), 53-59. https://doi.org/10.35905/almaarief.v2i2.1828.
[5] Sowmya, P., & Lakshmi, A., (2019). Comparison of parenting stress between
parents of children with special needs and those with normal children: A special
focus on paternal stress. Indian Journal of Clinical Anatomy and Physiology,
6, 415-417. https://doi.org/10.18231/j.ijcap.2019.090.
[6] Ariani, A., Wahyudi, M., & Rugaiyah, R. (2019). Inclusive education: Cooperation
between class teachers, special teachers, parents to optimize development of special
needs children. International Journal for Educational and Vocational Studies,
5(1). https://doi.org/10.29103/ijevs.v1i5.1616.
[7] Beamish, W., Meadow, D., Prime, M., & Fisher, B. (2016). Parent and preservice
teacher partnering in a technology-based home intervention: Preliminary findings.
https://doi.org/10.2991/icat2e-17.2016.4.
[8] Pertiwi, S. M. H., & Irwanto, I. (2020). The quality of life of mothers
who have children with autism spectrum disorder. Indonesian Journal of Disability
Studies, 7(2), 141-150. https://doi.org/10.21776/ub.ijds.2020.007.02.02.
[9] Abaoğlu, H., & Akı, E. (2019). Development and psychometric testing of
the Family Functioning Questionnaire in Rehabilitation (FFQR). Turkish Journal
of Medical Sciences, 49, 1766 - 1773. Turk J Med Sci. https://doi.org/10.3906/sag-1909-93
[8].
[10] Beamish, W., Meadow, D., Prime, M., & Fisher, B. (2016). Parent and preservice
teacher partnering in a technology-based home intervention: Preliminary findings.
https://doi.org/10.2991/icat2e-17.2016.4.
[11] Mahmoud, A.O. (2018). Family quality of life for families in early intervention
centers in Jordan. Advances in Social Sciences Research Journal, 5(5).
https://doi.org/10.14738/assrj.55.4625.
[12] Marlina, S. (2018). Dokter Lubis program. Review of Primary Care Practice
and Education (Kajian Praktik dan Pendidikan Layanan Primer), 1(2), 6.
https://doi.org/10.22146/rpcpe.33816.
[13] Pertiwi, S. M. H., & Irwanto, I. (2020). The quality of life of mothers
who have children with autism spectrum disorder. Indonesian Journal of Disability
Studies, 7(2), 141-150. https://doi.org/10.21776/ub.ijds.2020.007.02.02.
[14] Marlina, S. (2018). Dokter Lubis program. Review of Primary Care Practice
and Education (Kajian Praktik dan Pendidikan Layanan Primer), 1(2), 6.
https://doi.org/10.22146/rpcpe.33816.
[15] Molchanova, L.N., & Chekanova, A.V. (2018). Development of parental competence
through psychological and pedagogical support for families in the upbringing of
hearing-impaired children. Psychology in Russia, 4(11), 223-238. https://doi.org/10.11621/pir.2018.0415.
[16] Turchi, R., Antonelli, R.C., Norwood, K.W., Adams, R.C., Brei, T.J., Burke,
R.T., Davis, B.E., Friedman, S.L., Houtrow, A.J., Kuo, D.Z., Levy, S.E., Wiley,
S., Kalichman, M.A., Murphy, N.A., Bridgemohan, C., Mann, M., Peacock, G., Strickland,
B.B., Wells, N., Wiznitzer, M., Mucha, S.M., Cooley, W.C., Jeung, J., Johnson, B.,
Klitzner, T.S., Lail, J., Lindeke, L.L., Mullins, A., Partridge, L., Schwab, W.,
Waldron, C.S., Sia, C.C., Kraft, C.A., Long, T.F., Esquivel, M., & Tobin, A.
(2014). Patient- and family-centered care coordination: A framework for integrating
care for children and youth across multiple systems. Pediatrics, 5(133),
e1451 - e1460. https://doi.org/10.1542/peds.2014-0318.
[17] Barnard‐Brak, L., Stevens, T., & Carpenter, J. (2017). Care coordination
with schools: the role of family-centered care for children with special health
care needs. Maternal and Child Health Journal, 5(21), 1073-1078. https://doi.org/10.1007/s10995-016-2203-x
[18] Resch, J.A., Mireles, G.M., Benz, M., Grenwelge, C., Peterson, R., & Zhang,
D. (2010). Giving parents a voice: A qualitative study of the challenges experienced
by parents of children with disabilities. Rehabilitation psychology, 55 2,
139-50.
[19] Leon, A.M. (2014). Research on the challenges faced by families with children
experiencing health or mental health problems. Journal of Social Service Research,
5(40), 587 - 590. https://doi.org/10.1080/01488376.2014.955781.
[20] Han, K., Yang, Y., & Hong, Y.S. (2018). A structural model of family empowerment
for families of children with special needs. Journal of Clinical Nursing,5-6(27),
e833–e844. https://doi.org/10.1111/jocn.14195.
[21] Phillips, D.A., & Meloy, M.E. (2012). High-quality school-based pre-k
can boost early learning for children with special needs. Exceptional Children,
4(78), 471 - 490. https://doi.org/10.1177/001440291207800405.
[22] Sarkar, S., Khaitan, T., Sinha, R., & Kabiraj, A. (2016). Tuberous sclerosis
complex: A case report. Contemporary Clinical Dentistry, 7(2), 236-239. https://doi.org/10.4103/0976-237X.183071.
[23] Abdullah, B.B., & Omar, W.R. (2018). The importance of early intervention
programs on the development of special needs individual. International Journal
of Academic Research in Business and Social Sciences, 12(8). https://doi.org/10.6007/ijarbss/v8-i12/5049.
[24] Ingersoll, B., & Wainer, A.L. (2013). Pilot study of a school-based parent
training program for preschoolers with ASD. Autism, 4(17), 434 - 448. https://doi.org/10.1177/1362361311427155.
[25] Baumann, A.A., Mejía, A., Lachman, J.M., Parra-Cardona, R., López-Zerón, G.,
Amador Buenabad, N., Vargas Contreras, E., & Domenech Rodríguez, M.M. (2018).
Parenting programs for underserved populations in low- and middle-income countries:
Issues of scientific integrity and social justice. Global Social Welfare, 3(6),
199 - 207. https://doi.org/10.1007/s40609-018-0121-0.
[26] Al-Futuh, A. (2014). Early intervention services as perceived by parents of
children with autism in Egypt and Saudi Arabia. International Interdisciplinary
Journal of Education, 2(3), 238-249. https://doi.org/10.12816/0003002.
[27] Baumann, A.A., Mejía, A., Lachman, J.M., Parra-Cardona, R., López-Zerón, G.,
Amador Buenabad, N., Vargas Contreras, E., & Domenech Rodríguez, M.M. (2018).
Parenting programs for underserved populations in low- and middle-income countries:
Issues of scientific integrity and social justice. Global Social Welfare, 3(6),
199 - 207. https://doi.org/10.1007/s40609-018-0121-0.
[28] Ujianti, P. (2018). The Role of Support Group for Parents of Children with
Special Needs. Journal of Psychology and Instruction, 2(1), 31–37.
https://doi.org/10.23887/jpai.v2i1.13739.
[29] Kruger D. (1988). An introduction to phenomenological psychology (2nd
ed.). Cape Town, South Africa: Juta.
[30] Robinson D., Reed V. (Eds.). (1998). The A Z of social research jargon.
Aldershot, UK: Ashgate.
[31] Creswell, J. W. (2011). Educational research: Planning, conducting, and
evaluating quantitative and qualitative research. New Jersey: Pearson Education.
[32] Batitis, C., Alcaide, E., Arguillon, M., Roldan, J., & Agustin, L. (2019).
SMS notification implementing internet of things for barangay Labas, City of Santa
Rosa, Laguna. International Journal of Advanced Research in Computer Science.
https://doi.org/10.26483/IJARCS.V10I1.6356.
[33] Brysbaert, M. (2019). How Many Participants Do We Have to Include in Properly
Powered Experiments? A Tutorial of Power Analysis with Reference Tables. Journal
of Cognition, 2. https://doi.org/10.5334/joc.72.
[34] Groenewald, T. (2004). A Phenomenological Research Design Illustrated. International
Journal of Qualitative Methods, 3, 42 - 55. https://doi.org/10.1177/160940690400300104.
[35] Holroyd, C. (2001). Phenomenological Research Method, Design and Procedure:
A Phenomenological Investigation of the Phenomenon of Being-in-Community as Experienced
by Two Individuals Who Have Participated in a Community Building Workshop. Indo-Pacific
Journal of Phenomenology, 1, 1 - 10. https://doi.org/10.1080/20797222.2001.11433859.
[36] Knaack, P. (1984). Phenomenological Research. Western Journal of Nursing
Research, 6, 107 - 114. https://doi.org/10.1177/019394598400600108.
[37] Saldana, J. (2012). The coding manual for qualitative researchers.
SAGE Publications Inc.
[38] Moustakas, C. (1994). Phenomenological research methods. SAGE Publications.
[39] Coren, E., Ramsbotham, K., & Gschwandtner, M. (2018). Parent training
interventions for parents with intellectual disability. The Cochrane database
of systematic reviews, 7, CD007987. https://doi.org/10.1002/14651858.CD007987.pub3.
[40] Paswan A.D. & Kumar P. (2021). Is parental training effective in improving
the quality of life of person with intellectual disability: Experimental
research? International Journal of Indian Psychology, 9(1), 480-489.
DIP:18.01.048/20210901, DOI:10.25215/0901.048.
[41] Nawangsari, S. (2022). Psikoedukasi pengasuhan untuk meningkatkan pengetahuan
orang tua penyandang disabilitas. Procedia: Studi Kasus dan Intervensi Psikologi.
https://doi.org/10.22219/procedia.v10i3.19217.
[42] Dodds, R., Yarbrough, D., & Quick, N. (2018). Lessons learned: Providing
peer support to culturally diverse families of children with disabilities or special
health care needs. Social work, 63 3, 261-264. https://doi.org/10.1093/sw/swy019.
[43] Kuracki, K. (2019). Satisfaction with the support received by parents of children
with disabilities and the diversity of parental behaviour towards the child. Interdisciplinary
Context of Special Pedagogy, 26, 191 - 215. https://doi.org/10.14746/ikps.2019.26.09.
[44] Burgio, L., & Wynn, M. (2021). Risk area 5: Social support, 51-52. https://doi.org/10.1093/MED-PSYCH/9780190855949.003.0007.
[45] Dekkers, T., Hornstra, R., Oord, S., Luman, M., Hoekstra, P., Groenman, A.,
& Hoofdakker, B. (2021). Meta-analysis: Which components of parent training
work for children with attention-deficit/hyperactivity disorder? Journal of the
American Academy of Child and Adolescent Psychiatry. https://doi.org/10.1016/j.jaac.2021.06.015.
[46] Iida, N., Wada, Y., Yamashita, T., Aoyama, M., Hirai, K., & Narumoto,
J. (2018). Effectiveness of parent training in improving stress-coping capability,
anxiety, and depression in mothers raising children with autism spectrum disorder.
Neuropsychiatric Disease and Treatment, 14, 3355 - 3362. https://doi.org/10.2147/NDT.S188387.