There is always Sorrow: Risk Factors Faced by Parents of Children Presenting with Severe Intellectual Disabilities

Authors

  • Sandisiwe Buthelezi Department of Educational Psychology, University of Johannesburg, South Africa
  • Daphney Mawila Department of Educational Psychology, University of Johannesburg, South Africa https://orcid.org/0000-0002-8345-0888

DOI:

https://doi.org/10.6000/2292-2598.2024.12.01.2

Keywords:

Children, parents, severe intellectual disability, risk factors

Abstract

Background: This study investigates the risk factors faced by parents of children with Severe Intellectual Disabilities.

Methods: This study used a phenomenological research design within a qualitative research approach. Six parents of children diagnosed with Severe Intellectual Disability at Learners with Special Educational Needs schools were purposively selected to participate in this study. Data were collected through semi-structured interviews and a focus group. Thematic data analysis was used to analyze data.

Results: The findings of this study revealed that parents of children with Severe Intellectual Disabilities faced risks that exacerbated negative outcomes. Psychological distress, social exclusion and isolation, financial burdens, and lack of access to formal education were risk factors that hindered their ability to care for and support their children.

Conclusions: Based on these findings, the study concluded that parents need access to multidisciplinary teams of healthcare professionals to support them in combatting the risk factors they face.

References

Peer JW, Hillman SB. Stress and resilience for parents of children with intellectual and developmental disabilities: A review of key factors and recommendations for practitioners. J Policy PractIntellect Disabil 2014; 11: 92-98. https://doi.org/10.1111/jppi.12072 DOI: https://doi.org/10.1111/jppi.12072

Sloth-Nielsen J. Ratification of the United Nations Convention on the Rights of the Child: Some implications for South African law. S Afr J Hum Rights 1995; 11: 401-420. https://doi.org/10.1080/02587203.1995.11827573 DOI: https://doi.org/10.1080/02587203.1995.11827573

Giallo R, Woolhouse H, Gartland D, Hiscock H, Brown S. (2015). The emotional-behavioural functioning of children exposed to maternal depressive symptoms across pregnancy and early childhood: a prospective Australian pregnancy cohort study. Eur Child Adoles Psychiatry 2015; 24: 1233-1244. https://doi.org/10.1007/s00787-014-0672-2 DOI: https://doi.org/10.1007/s00787-014-0672-2

Barak-Levy Y, Atzaba-Poria NA. A mediation model of parental stress, parenting, and risk factors in families having children with mild intellectual disability. Res Dev Disabil 2020; 98: 103577. https://doi.org/10.1016/j.ridd.2020.103577 DOI: https://doi.org/10.1016/j.ridd.2020.103577

Olsson MB, Larsman P, Hwang PC. Relationships among risk, sense of coherence, and wellbeing in parents of children with and without intellectual disabilities. J Pol Prac Intel Disabil 2008: 5: 227-236. https://doi.org/10.1111/j.1741-1130.2008.00184.x DOI: https://doi.org/10.1111/j.1741-1130.2008.00184.x

Datta SS, Russell PSS, Gopalakrishna SC. Burden among the caregivers of children with intellectual disability: associations and risk factors. J Learn Disabil 2002; 6: 337-350. https://doi.org/10.1177/146900470200600401 DOI: https://doi.org/10.1177/146900470200600401

Sadiki M. A mother’s experiences of navigating the healthcare system as a parent of a child with disability in South Africa: How far have we come three decades later? Afr J Disabil 2022; 78.

Mkabile S, Swartz L. ‘I waited for it until forever’: Community barriers to accessing intellectual disability services for children and their families in Cape Town, South Africa. Int J Environ Res Public Health 2020; 17: 8504. https://doi.org/10.3390/ijerph17228504 DOI: https://doi.org/10.3390/ijerph17228504

American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. USA: APA; 2013. https://doi.org/10.1176/appi.books.9780890425596 DOI: https://doi.org/10.1176/appi.books.9780890425596

Patel DR, Cabral MD, Ho A, Merrick J. A clinical primer on intellectual disability. TranslPediat 2020; 9(Suppl 1): S23-A35. https://doi.org/10.21037/tp.2020.02.02 DOI: https://doi.org/10.21037/tp.2020.02.02

Morrison JR. DSM-5 made easy: The clinician’s guide to diagnosis.UK: The Guilford Press; 2014.

Taylor RL, Sternberg L. (2012). Exceptional children: integrating research and teaching. UK: Springer Science& Business Media; 2012.

Department of Basic Education. Draft policy for the provision of quality education and support for children with severe to profound intellectual disability. Pretoria: Government Printers; 2016.https://www.education.gov.za/Portals/0/Documents/Legislation/Call%20for%20Comments/DraftCSPIDPolicyOct2016.pdf?ver=2016-11-07-092618-000

Gentile JP, Cowan AE, Dixon DW (Eds.). Guide to intellectual disabilities: a clinical handbook.UK: Springer; 2019. https://doi.org/10.1007/978-3-030-04456-5 DOI: https://doi.org/10.1007/978-3-030-04456-5

Jacobson JW, Mulick JA, Rojahn J (Eds.). Handbook of intellectual and developmental disabilities. Thousand Oaks, CA: Sage; 2007. https://doi.org/10.1007/0-387-32931-5 DOI: https://doi.org/10.1007/0-387-32931-5

Schalock RL, Luckasson R, Tassé MJ. Defining, diagnosing, classifying, and planning supports for people with intellectual disability: An emerging consensus. Siglo Cero 2021; 52: 29-36. https://doi.org/10.14201/scero20215232936 DOI: https://doi.org/10.14201/scero20215232936

Saulnier CA, Klaiman C. Essentials of adaptive behavior assessment of neurodevelopmental disorders. UK: Wiley; 2018.

Pandya SP. Spirituality and parents of children with disability: Views of practitioners. J Disabil Rel 2017; 21: 64-83. https://doi.org/10.1080/23312521.2016.1270178 DOI: https://doi.org/10.1080/23312521.2016.1270178

Shogren KA, Luckasson R, Schalock RL. An integrated approach to disability policy development, implementation, and evaluation. Intellect Dev Disabil 2017; 55: 258-268. https://doi.org/10.1352/1934-9556-55.4.258 DOI: https://doi.org/10.1352/1934-9556-55.4.258

Antony EM. Framing childhood resilience through Bronfenbrenner’s ecological systems theory: A discussion paper. CERJ 2022; 9.

Masten AS, Narayan AJ, Wright MOD. Resilience processes in development: multisystem integration emerging from four waves of research. In: Handbook of resilience in children. UK: Springer International Publishing 2023; pp. 19-46. https://doi.org/10.1007/978-3-031-14728-9_2 DOI: https://doi.org/10.1007/978-3-031-14728-9_2

Opoku M, Nketsia W, Banye M, Mprah W, Dogbe J, Badu E. Caregiving experiences and expectations of parents with in-school children with intellectual disability in Ghana. Res Dev Disabil 2019; 96. https://doi.org/10.1016/j.ridd.2019.103524 DOI: https://doi.org/10.1016/j.ridd.2019.103524

Anderson D, Dumont S, Jacobs P, Azzaria L. The personal costs of caring for a child with a disability: A review of the literature. Pub Health Rep 2007; 122: 3-16. https://doi.org/10.1177/003335490712200102 DOI: https://doi.org/10.1177/003335490712200102

Masulani‐Mwale C, Mathanga D, Silungwe D, Kauye F, Gladstone M. (2016). Parenting children with intellectual disabilities in Malawi: The impact that reaches beyond coping? Child Care Health Dev 2016; 42: 871-880. https://doi.org/10.1111/cch.12368 DOI: https://doi.org/10.1111/cch.12368

Dammeyer J. Parents’ management of the development of their children with disabilities: incongruence between psychological development and culture. Out Crit Prac Stud 2010; 12: 42-55. https://doi.org/10.7146/ocps.v12i1.2844 DOI: https://doi.org/10.7146/ocps.v12i1.2844

Hodapp RM, Sanderson KA, Meskis SA, Casale EG. Adult siblings of persons with intellectual disabilities: past, present, and future. In: International review of research in developmental disabilitiesVol. 53. London: Academic Press; 2017: pp. 163-202. https://doi.org/10.1016/bs.irrdd.2017.08.001 DOI: https://doi.org/10.1016/bs.irrdd.2017.08.001

Baumann SL. Similarities and differences in experiences of hope. Nurs Sci Q 2004; 17: 339-344. https://doi.org/10.1177/0894318404268828 DOI: https://doi.org/10.1177/0894318404268828

McKenzie J. Intellectual disability in inclusive education in South Africa: Curriculum challenges. J Policy Pract Intellect Disabil 2021; 18: 53-57. https://doi.org/10.1111/jppi.12337 DOI: https://doi.org/10.1111/jppi.12337

Wood T, Essop F, Watermeyer B, McKenzie J. Access to education for children with severe to profound intellectual disability in South Africa: The potential and limits of social action. In: The Palgrave handbook of disability and citizenship in the global South. Thousand Oaks, CA: Sage 2019; pp. 135-145. https://doi.org/10.1007/978-3-319-74675-3_10 DOI: https://doi.org/10.1007/978-3-319-74675-3_10

Oliver C, Adams D, Allen D, Crawford H, Heald M, Moss J, Woodcock K. The behaviour and wellbeing of children and adults with severe intellectual disability and complex needs: the Be-Well checklist for carers and professionals. Paed Child Health 2020: 30: 416-424. https://doi.org/10.1016/j.paed.2020.09.003 DOI: https://doi.org/10.1016/j.paed.2020.09.003

Totsika V, Liew A, Absoud M, Adnams C, Emerson E. Mental health problems in children with intellectual disability. Lancet Child Adoles Health 2022; 6: 432-444. https://doi.org/10.1016/S2352-4642(22)00067-0 DOI: https://doi.org/10.1016/S2352-4642(22)00067-0

Pietkiewicz I, Smith JA. A practical guide to using interpretative phenomenological analysis in qualitative research psychology. CzasoPsycholJ 2014; 20: 7-14. https://doi.org/10.14691/CPPJ.20.1.7 DOI: https://doi.org/10.14691/CPPJ.20.1.7

Baxter P, Jack S. Qualitative case study methodology: Study design and implementation for novice researchers. Qual Rep 2008; 13: 544-559

Ranjit K. Research methodology: A step-by-step guide for beginners. Thousand Oaks, CA: Sage; 2011.

Bertram C, Christiansen I. Understanding research. An introduction to reading research.Pretoria: Van Schaik Publishers; 2014.

Clarke V, Braun V. Thematic analysis. J Posit Psychol 2017; 12: 297-298. https://doi.org/10.1080/17439760.2016.1262613 DOI: https://doi.org/10.1080/17439760.2016.1262613

Scherer N, Verhey I, Kuper H. Depression and anxiety in parents of children with intellectual and developmental disabilities: A systematic review and meta-analysis. Plos One 2019; 14: e0219888. https://doi.org/10.1371/journal.pone.0219888 DOI: https://doi.org/10.1371/journal.pone.0219888

Alnazly EK,Abojedi A. Psychological distress and perceived burden in caregivers of persons with autism spectrum disorder. PerspectPsychiatr Care 2019; 55: 501-508. https://doi.org/10.1111/ppc.12356 DOI: https://doi.org/10.1111/ppc.12356

Taderera C, Hall H. Challenges faced by parents of children with learning disabilities in Opuwo, Namibia. Afr J Disabil 2017; 6: 283. https://doi.org/10.4102/ajod.v6i0.283 DOI: https://doi.org/10.4102/ajod.v6i0.283

Nordlund RM. Chronic sorrow and the impact on parents of children with disabilities [thesis]. California: California State University; 2023.

Olshansky S.Chronic sorrow: a response to having a mentally defective child. Fam Soc: J Contemp Soc Serv 1962; 43: 190-193. https://doi.org/10.1177/104438946204300404 DOI: https://doi.org/10.1177/104438946204300404

Coughlin MB, Sethares KA. Chronic sorrow in parents of children with a chronic illness or disability: an integrative literature review. J PediatrNurs 2017; 37: 108-116.Baumgardner DJ. Social isolation among families caring for children with disabilities. J PatientCent Res Rev 2019; 6: 229. https://doi.org/10.1016/j.pedn.2017.06.011 DOI: https://doi.org/10.1016/j.pedn.2017.06.011

Moodley J, Ross E. Inequities in health outcomes and access to health care in South Africa: A comparison between persons with and without disabilities. DisabilSocy 2015; 30: 630-644. https://doi.org/10.1080/09687599.2015.1034846 DOI: https://doi.org/10.1080/09687599.2015.1034846

Hassan AA, Hamid AM, Eltayeb NH. Burden on parenting of children with special needs. EAS J Nurs Mid 2021; 3. https://doi.org/10.36349/easjnm.2021.v03i02.002 DOI: https://doi.org/10.36349/easjnm.2021.v03i02.002

Leonard H, Whitehouse A, Jacoby P, Benke T, Demarest S, Saldaris J, Downs J. Quality of life beyond diagnosis in intellectual disability–Latent profiling. Res Dev Disabil 2022; 129: 104322. https://doi.org/10.1016/j.ridd.2022.104322 DOI: https://doi.org/10.1016/j.ridd.2022.104322

Tryfon M, Anastasia A, Eleni R. Parental perspectives on inclusive education for children with intellectual disabilities in Greece. Int J Dev Disabil 2021; 67: 397-405. https://doi.org/10.1080/20473869.2019.1675429 DOI: https://doi.org/10.1080/20473869.2019.1675429

Currie G, Szabo J. Social isolation and exclusion: the parents' experience of caring for children with rare neurodevelopmental disorders. Int J Qual Stud Health Wellbeing 2020; 15: 1725362. https://doi.org/10.1080/17482631.2020.1725362 DOI: https://doi.org/10.1080/17482631.2020.1725362

Aktan O, Orakcı Ş, Durnalı M. Investigation of the relationship between burnout, life satisfaction and quality of life in parents of children with disabilities. Eur J Spec Needs Educ 2020; 35: 679-695. https://doi.org/10.1080/08856257.2020.1748429 DOI: https://doi.org/10.1080/08856257.2020.1748429

Mkabile S, Garrun KL, Shelton M, Swartz L. African families' and caregivers' experiences of raising a child with intellectual disability: A narrative synthesis of qualitative studies. Afr J Disabil 2021; 10: 1-13. https://doi.org/10.4102/ajod.v10i0.827 DOI: https://doi.org/10.4102/ajod.v10i0.827

Baumgardner DJ. Social isolation among families caring for children with disabilities. J Patient Cent Res Rev 2019; 6:229-232. https://doi.org/10.17294/2330-0698.1726 DOI: https://doi.org/10.17294/2330-0698.1726

Engelbrecht P, Oswald M, Swart E, Kitching A, Eloff I. (2005). Parents’ experiences of their rights in the implementation of inclusive education in South Africa. Sch Psychol Int 2005; 26: 459-477. https://doi.org/10.1177/0143034305059021 DOI: https://doi.org/10.1177/0143034305059021

Mabuza N. The experiences of parents with special needs children in terms of access, resources, and support for their children at special needs schools [dissertation]. Johannesburg: University of Johannesburg; 2017.

Department of Education. Education White Paper 6—Special needs education: Building an inclusive education and training system.Pretoria: Government Printers; 2001.

De Sas Kropiwnicki ZO, Elphick J, Elphick R. Standing by themselves: Caregivers’ strategies to ensure the right to education for children with disabilities in Orange Farm, South Africa. Child 2014; 21: 354-368. https://doi.org/10.1177/0907568214526263 DOI: https://doi.org/10.1177/0907568214526263

Singal N, Ware H, Bhutani SK. Inclusive quality education for children with disabilities. Cambridge: University of Cambridge; 2017.

Wegner L, Rhoda A. The influence of cultural beliefs on the utilization of rehabilitation services in a rural South African context: Therapists’ perspective. Afr J Disabil 2005; 4: 1-8. https://doi.org/10.4102/ajod.v4i1.128 DOI: https://doi.org/10.4102/ajod.v4i1.128

Chitiyo M, Chitiyo G. (2007). Special education in Southern Africa: Current challenges and future threats. J Spec Educ 2007; 8: 61.

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Published

2024-05-17

How to Cite

Buthelezi, S. ., & Mawila, D. . (2024). There is always Sorrow: Risk Factors Faced by Parents of Children Presenting with Severe Intellectual Disabilities. Journal of Intellectual Disability - Diagnosis and Treatment, 12(1), 12–21. https://doi.org/10.6000/2292-2598.2024.12.01.2

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General Articles