A qualitative study on the undesirable experiences of caregivers raising children with developmental disabilities in a rural community in South Africa

Abstract

Parents and caregivers of children with developmental disabilities have a dual responsibility of addressing the child’s unique developmental needs while also negotiating broader societal expectations surrounding caregiving. Sustaining a balance between caregiving demands and personal well-being is often challenging, which increases their vulnerability to burnout and adverse mental health outcomes. This qualitative study used focus group discussions to explore the lived experiences of caregivers who were raising children aged 6 months to 12 years with various developmental disabilities in a rural setting. Participants were purposefully recruited from a regional hospital in northern KwaZulu-Natal, South Africa, where they were accessing healthcare. Eighteen (n = 18) isiZulu-speaking caregivers participated in five focus groups. The data were analysed using a thematic approach that followed a set framework. Three overarching themes and eight subthemes emerged from the data, capturing their experiences, the intersecting challenges they encountered, and their responses to and adaptations to the undesired outcomes. The findings showed a significant gap in knowledge and access to information regarding children's conditions among families, community members, and health professionals. Psychological acceptance was foundational for coping with challenges and was perceived as essential, requiring a swift adjustment to their current reality. This study highlights the persistent and multifaceted challenges faced by caregivers of children with developmental disabilities. The primary burdens are rooted in systemic issues, specifically healthcare limitations and educational barriers. The findings show an urgent need for structured interventions that prioritise caregiver mental health.

Keywords: {'name': 'developmental disabilities, caregivers, parents, experiences, rural communities'}

Authors & affiliations

Nontokozo Lilian Mbatha
University of KwaZulu-Natal - Westville Campus

Kebogile Mokwena
Sefako Makgatho Health Sciences University

Deposited references

Supplied references, not a list of publications citing this article.

DOI: 10.1186/s12912-024-02142-1

DOI: 10.1016/S2215-0366(21)00207-8

DOI: 10.4102/ajod.v9i0.735

Ali, A., Rashid, M., Davila-Cervantes, A., Dennett, L., Thompson-Hodgetts, S., & Goez, H. (2023). Parents’ immediate reaction and responses to their child’s ASD diagnosis: A synthesis review. Journal on Developmental Disabilities, 28(1), 1–27. https://oadd.org/wp-content/uploads/2023/04/V28-N1-21-367-Ali-et-al-v2.pdf

DOI: 10.1186/1750-1172-8-22

DOI: 10.1177/008124631104100202

DOI: 10.1037/13620-004

Brink, H., Van der Walt, C., & Van Rensburg, G. (2006). Fundamentals of research methodology for health care professionals. Juta. https://books.google.com/books?hl=en&lr=&id=YZnPYoA4Jk0C

DOI: 10.1136/archdischild-2019-318398

DOI: 10.1080/19349637.2013.776442

DOI: 10.1111/1467-8527.00231

DOI: 10.1111/nhs.13103

DOI: 10.4102/hsag.v26i0.1538

DOI: 10.1007/s40489-021-00239-w

DOI: 10.64628/AAJ.frq4mnkf3

DOI: 10.4102/ajod.v10i0.951

DOI: 10.1080/09638288.2024.2303385

DOI: 10.1038/s41433-021-01821-6

DOI: 10.3102/00346543241288247

DOI: 10.1044/2020_AJSLP-20-00031

DOI: 10.2169/internalmedicine.0911-22

DOI: 10.1097/FCH.0000000000000412

DOI: 10.1177/17446295221106151

DOI: 10.1016/j.ridd.2023.104490

DOI: 10.1037/scp0000352

DOI: 10.4102/SAJCD.v71i1.1049

DOI: 10.1007/s11136-021-02994-z

DOI: 10.1002/anzf.1582

DOI: 10.4324/9781003056737-24

DOI: 10.1080/20473869.2019.1603730

DOI: 10.1111/cch.12546

DOI: 10.1111/ijsw.12537

DOI: 10.29120/ijpsw.2020.v11.i1.195

DOI: 10.3390/brainsci11070880

DOI: 10.1007/s10995-020-02896-5

DOI: 10.1016/j.ajp.2019.101851

DOI: 10.1186/s12888-018-1731-x

DOI: 10.1080/01488376.2021.1875966

DOI: 10.55951/nurture.v18i4.799

DOI: 10.3390/ijerph20053969

DOI: 10.3390/ECERPH-3-09023

DOI: 10.1111/jir.12135

DOI: 10.3390/ijerph192316069

DOI: 10.1007/s12187-020-09784-y

DOI: 10.15270/54-4-676

DOI: 10.1352/1934-9556-51.6.446

DOI: 10.29333/ejecs/1287

DOI: 10.1007/s10882-023-09944-2

DOI: 10.1016/j.rasd.2023.102285

DOI: 10.1016/S2214-109X(18)30309-7

DOI: 10.3389/fpubh.2023.1122009

DOI: 10.1007/s10826-018-1088-2

DOI: 10.1007/s10488-013-0528-y

DOI: 10.1177/1044207310389333

Patton, M. Q. (2014). Qualitative research & evaluation methods: Integrating theory and practice. Sage Publications. https://books.google.com/books?id=ovAkBQAAQBAJ

DOI: 10.1016/j.pedn.2015.10.022

DOI: 10.1111/camh.12704

DOI: 10.7196/SAJCH.2020.v14i4.01853

DOI: 10.3928/01913913-20220727-02

DOI: 10.17159/2310-3833/2019/vol49n1a7

DOI: 10.4102/ajod.v11i0.942

DOI: 10.1177/1367493520905381

DOI: 10.1016/j.pedn.2022.01.014

DOI: 10.1093/inthealth/ihaa044

DOI: 10.1136/bmjopen-2017-018729

DOI: 10.32598/irj.19.3.1362.1

DOI: 10.1177/13623613221105085

DOI: 10.11114/jets.v3i4.902

DOI: 10.1080/09638288.2022.2136269

Vassallo, T. (2016). “It’s such a battle”: A phenomenological account of raising a child on the autistic spectrum—A battle with bureaucracy and behaviour. The Plymouth Student Scientist, 9(1), 229–251. https://pearl.plymouth.ac.uk/tpss/vol9/iss1/11

DOI: 10.35631/IJEPC.746037

World Health Organization. (2007). International classification of functioning, disability, and health: Children & youth version (ICF-CY). World Health Organization. https://iris.who.int/server/api/core/bitstreams/81e04699-2930-4da2-ac97-76725c7dcc07/content

World Health Organization. (2023). Global report on children with developmental disabilities: From the margins to the mainstream. World Health Organization. https://iris.who.int/server/api/core/bitstreams/b699c175-08a7-4670-b757-8f6a143de6fe/content

DOI: 10.3389/fpubh.2021.671988