Top

BMC Public Health

Published in:

Open Access 01-12-2024 | Disorders of Intellectual Development | Research

Exploring information needs among family caregivers of children with intellectual disability in a rural area of South Africa: a qualitative study

Authors: Mantji Juliah Modula, Mpho Grace Chipu

Published in: BMC Public Health | Issue 1/2024

Abstract

Background

Globally, families experience challenges caring for and raising children with intellectual disability (ID). Family caregivers in rural states are mostly known for lacking support resources, including information on understanding the care of ID. Lack of adequate information on understanding of ID compromises the provision of life-long care and support of the children with ID’s physical, emotional, psychological and social developmental well-being. The study aimed to explore the information needs of family caregivers regarding the care of children with ID in rural areas of Limpopo Province, South Africa.

Methods

This qualitative explorative research conducted 16 in-depth individual interviews and one focus group discussion with ten family members. The participants shared their experiences of raising children with ID in rural communities. Inductive thematic analysis using Atlas Ti software categorised emerging themes and subthemes of this study from merged data sets on information needs regarding the care of children with ID among family caregivers.

Results

The findings highlighted the need for information regarding ID care among family caregivers raising children with ID in the home environment. The information challenges experienced by family caregivers include caring for the challenging behaviour of children with ID and available support resources and services for the children and their families. These challenges impact the care and support required to meet the developmental needs of children with ID. Furthermore, inadequate information on ID among family caregivers in rural communities with a lack of resources restricts the children from accessing required support services.

Conclusions

Given the information challenges these families face on ID, the stakeholders must develop continuous training programmes that will equip, empower, and further monitor ID care and management among family caregivers to enhance care and the raising of children with dignity.

Available only for authorised users

American Psychiatric Association. Diagnostic and statistical manual of mental disorders: DSM-5™. 5th ed. Library of Congress; 2013.

Arnett AB, Wang T, Eichler EE, Bernier RA. Reflections on the genetics-first approach to advancements in molecular genetics and neurobiological research on neurodevelopmental disorders. J Neurodev Disord. 2021;13:24. https://doi.org/10.1186/s11689-021-09371-4.CrossRefPubMedPubMedCentral

Liao P, Vajdic C, Trollor J, Reppermund S. Prevalence and incidence of physical health conditions in people with intellectual disability– a systematic review. PLoS ONE. 2021. https://doi.org/10.1371/journal.pone.0256294. 16,8,e025629.CrossRefPubMedPubMedCentral

Elmasry HMA, Aladawy MA, Abd-elhamid MM. Prevalence and Risk Factors of Intellectual Disabilities in Children. EJHM. 81, 1, 1307–1313. http://creativecommons.org/licenses/by/4.0/ (2020).

S´anchez-Luquez KY, Carpena MX, Karam SM, Tovo-Rodrigues L. The contribution of whole-exome sequencing to intellectual disability diagnosis and knowledge of underlying molecular mechanisms: a systematic review and meta-analysis. Mutat Res Rev Mutat Res. 2022. https://doi.org/10.1016/j.mrrev.2022.108428.CrossRefPubMed

Olusanya BO, Kancherla V, Shaheen A, Ogbo FADAC. Global and regional prevalence of disabilities among children and adolescents: analysis of findings from global health databases. Front Public Health. 2022. https://doi.org/10.3389/fpubh.2022.977453.CrossRefPubMedPubMedCentral

Agai A, Zhekov Z. Attitudes of the parents with different status (parent/guardian) regarding the competences of the adults with intellectual disability to independent living. Int J Knowl. 2019. https://doi.org/10.35120/kij31061839a. 31,6,1849– 1844.CrossRef

Ahmad W, Nazli, Chavan BS. Knowledge, attitude, and practice among parents about sex education of their children with intellectual disability. Indian J Soc Psychiatry. 2022. https://doi.org/10.4103/ijsp.ijsp29720. 38,357– 61.CrossRef

Machalicek W, Lang R, Raulston TJ. Training parents of children with intellectual disabilities: Trends, Issues, and future directions. Curr Dev Disord Rep. 2015;110–8. https://doi.org/10.1007/s40474-015-0048-4.

10.

Sapiets SJ, Hastings RP, Stanford C, Totsika V. Families’ Access to early intervention and supports for children with Developmental Disabilities. J Early Interv. 2023;45,2:103–21. https://doi.org/10.1177/10538151221083984.CrossRef

11.

Fauth RC, Platt L, Parsons S. The development of behavior problems among disabled and non-disabled children in England. JADP. 2017;52:46–58. http://eprints.lse.ac.uk/82634.

12.

Murphy R, et al. Estimated prevalence of disability and developmental delay among preschool children in rural Malawi: findings from Tikule Limodzi, a cross-sectional survey. Child Care Health Dev. 2020;46:187–94. https://doi.org/10.1111/cch.12741.CrossRefPubMedPubMedCentral

13.

Schrader PG, Lawless KA. The knowledge, attitudes, & behaviors Approach: how to evaluate performance and learning in Complex environments. Perform Improv. 2004;43:9. https://doi.org/10.1002/pfi.4140430905.CrossRef

14.

Vilaseca R, Rivero M, Leiva D, Ferrer F. Mothers’ and fathers’ parenting and other family context variables linked to developmental outcomes in young children with intellectual disability: a two–wave longitudinal study. J Dev Phys Disabil. 2023;35:387–416. https://doi.org/10.1007/s10882-022-09856-7.CrossRef

15.

Norlin J, Randell E. Social workers’ perceptions of assessing the parental capacity of parents with intellectual disabilities in child protection investigations. J IntellectDisabil. 2022;0:0,1–18. https://doi.org/10.1177/17446295221113717jid.CrossRef

16.

Ericson S, Stadskleiv K, Hesla MW. Gaining super control: psychoeducational group intervention for adolescents with mild intellectual disability and their parents. J Intellect Disabil. 2022;6,2:350–64. https://doi.org/10.1177/1744629521995373.CrossRef

17.

Mohamed AR, Sterkenburg P, Van Rensburg E, Schuengel C. Adapting attachment and Biobehavioral catch-up for infants and young children with intellectual disabilities and developmental delays in South Africa: reflections and recommendations from local stakeholders. Infant Ment Health J. 2022;1–22. https://doi.org/10.1002/imhj.22027.

18.

Leider JP., et al. The State of Rural Public Health: Enduring needs in a New Decade. AJPH Rural Health. 2020;110(9):1274–343. https://doi.org/10.2105/AJPH.2020.305728.

19.

Cantero-Garlito PA, Flores-Martos JA, Moruno-Miralles P. Care of children with disabilities in rural areas: meanings and impact on everyday life and Health. Study protocol. Int. J Qual Methods. 2020;19:1–7. https://doi.org/10.1177/1609406920947602.CrossRef

20.

Chauke T, Poggenpoel M, Myburgh CPH, Ntshingila N. Experiences of parents of an adolescent with intellectual disability in Giyani, Limpopo province. South Africa’ Health SA Gesondheid. 2021. https://doi.org/10.4102/hsag.v26i0.1538.;26,0, a1538.CrossRefPubMed

21.

Modula MJ. The support needs of families raising children with intellectual disability. Afr J Disabil. 2021;11(0):a952. https://doi.org/10.4102/ajod.v11i0.952.CrossRef

22.

Sadiki MC. Parenting a child with disability in rural South Africa: navigating the healthcare system. Afr J Disabil. 2022;11. a942.

23.

Fortney S, Tass’e MJ. Urbanicity, health, and access to services for people with intellectual disability and developmental disabilities. AJIDD 126. 2021https://doi.org/10.1352/1944-7558-126.6.492.CrossRef

24.

Huus K, Dada S, Bornman J, Lygnegård F. The awareness of primary caregivers in South Africa of the human rights of their children with intellectual disabilities. Child: Care Health Dev. 2016;42:863–70. https://doi.org/10.1111/cch.12358.,6,.CrossRefPubMed

25.

Singh RL, Moody EJ, Rigles B, Smith EB. What it takes to raise children with autism in a rural state. Adv Neurodev Disord. 2018. https://doi.org/10.1007/s41252-018-0082-4.CrossRef

26.

James N. The formal support experiences of family carers of people with an intellectual disability who also display challenging behaviour and mental health issues: what do carers say? J IntellecT Disabil. 2013;17:1,6–23. https://doi.org/10.1177/1744629512472610.CrossRefPubMed

27.

Sefotho MN, Ferreira R, Lushozi BB. The quest for ongoing support by parents of learners with intellectual disabilities. J Educ. 2021. https://doi.org/10.17159/2520-9868/i85a05.CrossRef

28.

Trafford Z. People don’t understand what we go through! Caregiver views on South Africa’s care dependency grant’. Afric J Disabil. 2023;12. 0,a111;.

29.

Koolen J, van Oorsouw W, Verharen L, Embregts P. Support needs of parents with intellectual disabilities: systematic review on the perceptions of parents and professionals. J Intellect Disabil. 2020;24,4:559–83. https://doi.org/10.1177/1744629519829965.CrossRef

30.

Saldana J, Omasta M. Qualitative research: Analysing Life. Thousand Oaks: Sage; 2018.

31.

Capricorn District Municipality. Annual report 2017/2018. http://www.localgoverment.co.za (2017).

32.

South Africa (Republic). Department of Social Development. The White Paper on families. Pretoria: Government Printer; 2013.

33.

Modula MJ, Sumbane GO. Families’ experiences on Safety needs of children with intellectual disability. Int J Environ Res Public Health. 2022;19:15246. https://doi.org/10.3390/ijerph192215246.CrossRefPubMedPubMedCentral

34.

Rubin HJ, Rubin IS. 2012. Qualitative interviewing: The art of hearing data. 3rd edition. Thousand Oaks: Sage.

35.

Henning E, Van Rensburg W, Smit B. 2013. Finding your way in qualitative research. 1st edition. Pretoria: Van Schaik.

36.

Oliver M. The politics of disablement. Macmillan Education; 1990.

37.

Beighton C, Wills J. Are parents identifying positive aspects to parenting their child with an intellectual disability or are they just coping? A qualitative exploration. J Intellect Disabil. 2017;21,4:325–45. https://doi.org/10.1177/1744629516656073.CrossRef

38.

Douglas T, Redley B, OttmannG. The need to know: the information needs of parents of infants with an intellectual disability-a qualitative study. J Adv Nurs. 2017;73,11:2600–8. https://doi.org/10.1111/jan.13321.CrossRef

39.

Vadivelan K, Sekar P, Sruthi SS, Gopichandran V. Burden of caregivers of children with cerebral palsy: an intersectional analysis of gender, poverty, stigma, and public policy. BMC Public Health. 2020. https://doi.org/10.1186/s12889-020-08808-0..20,645.CrossRefPubMedPubMedCentral

40.

Jandrić S, Kurtović A. Parenting sense of competence in parents of children with and without intellectual disability. EJOP. 2021;17(2):75–91. https://doi.org/10.5964/ejop.3771.CrossRefPubMedPubMedCentral

41.

Genik LM, McMurtry CM. Reflections and considerations for knowledge translation efforts on pain training for caregivers of children with intellectual and developmental disabilities. ISAP. 2020;22(2):2–24. https://hdl.handle.net/10214/21392.

42.

Wakimizu R, Fujioka H, Nishigaki K, Matsuzawa A. Family empowerment and associated factors in Japanese families raising a child with severe motor and intellectual disabilities. Int J Nurs Sci. 2018;5:370–6. https://doi.org/10.1016/j.ijnss.2018.09.006.CrossRefPubMedPubMedCentral

43.

Saini R, Ahmad W, Nazli. Awareness among parents of individuals with intellectual disability about sexual health education. Ind Psychiatry J. 2021;30:2,224–9. https://doi.org/10.4103/ipj.ipj7421.CrossRefPubMedPubMedCentral

44.

Jojo N, Nattala P, Seshadri S, Krishnakumar P, Thomas S. Knowledge of sexual abuse and resistance ability among children with intellectual disability. Child Abuse Negl. 2020. https://doi.org/10.1016/j.chiabu.2022.105985..136.CrossRef

45.

Kiernan K, Mitchell D, Stansfield J, Taylor C. Mothers’ perspectives on the lived experience of children with intellectual disability and challenging behaviour. J Intellect Disabil. 2019;23,2:175–89. https://doi.org/10.1177/1744629517737149.CrossRef

46.

Medeiros K, Rojahn J, Moore LL, Ingen DJ. Functional properties of behaviour problems depending on level of intellectual disability. J Intellect Disabil Res. 2014;58:2,151–61. https://doi.org/10.1111/jir.12025.CrossRefPubMed

47.

Vasileiadis I, Maro Doikou-Avlidou M. Enhancing social interaction of pupils with intellectual disabilities with their general education peers: the outcomes of an intervention programme. J Res Special Educational Needs. 2018;0(0). https://doi.org/10.1111/1471-3802.12410.

48.

World Health Organisation. Towards a Common Language for Functioning, Disability and Health. The International Classification of Functioning, Disability and Health. (Geneva, 2002).

49.

Hewitt O, Keeling N, Pearce M. Training a family in physical interventions as part of a positive behaviour support intervention for challenging behaviour. Br J Learn Disabil. 2016;44,2:159–66. https://doi.org/10.1111/bld.12130.CrossRef

50.

Bizzego A, et al. Child disability and caregiving in low and middle income countries: big data approach on open data. Res Dev Disabil. 2020;107:103795. https://doi.org/10.1016/j.ridd.2020.103795.CrossRefPubMed

51.

Teague SJ, Newman LK, Tonge BJ, Gray KM, The MHYPEDD Team. Attachment and child behaviour and emotional problems in autism spectrum disorder with intellectual disability. J Appl Res Intellect Disabil. 2020;33:475–87. https://doi.org/10.1111/jar.12689.CrossRefPubMed

52.

Fernández-Ávalos MI, et al. Feeling of grief and loss in parental caregivers of adults diagnosed with intellectual disability. J Appl Res Intellect Disabil. 2021;34:712–23. https://doi.org/10.1111/jar.12842.CrossRefPubMed

53.

O’Neill LP, Murray LE. Perceived parenting styles fail to mediate between anxiety and attachment styles in adult siblings of individuals with developmental disabilities. J Autism Dev Disorders. 2015;46:3144–54. https://doi.org/10.1007/s10803-016-2859-5.CrossRef

54.

Schlebusch L, Dada S, Samuels AE. Family quality of life of South African families raising children with Autism Spectrum Disorder. J Autism Dev Disorders. 2017;47. https://doi.org/10.1007/s10803-017-3102-8.,1966–1977.

55.

Pillai S, Makhetha M, Aldous C. A study reflecting the demographics and comorbidities of children diagnosed with autism spectrum disorder at initial presentation to the KwaZulu-Natal Children’s hospital. S Afr J Child Health. 2021;15:3,125–9. https://doi.org/10.7196/SAJCH.2021.v15.i3.1752.CrossRef

56.

Mulligan B, John M, Coombes R, Singh R. Developing outcome measures for a family intensive support service for children presenting with challenging behaviours. Br J Learn Disabil. 2014;43:161–7. https://doi.org/10.1111/bld.12091.CrossRef

57.

Sajjad S. Stress faced by Pakistani mothers of children with intellectual disabilities and its impact on their family life. J Int Association Special Educ. 2011;12:171–78. http://iase.coe.nau.edu/index3.html.

58.

Alaki SM, Bakry NS. Dental Pain in Children with Intellectual disabilities: caregivers’ perspective. Int J Dent. 2012. https://doi.org/10.1155/2012/701608.

59.

Frolova O, Nikolaev A, Grave P, Lyakso E. Speech Features of Children with Mild Intellectual Disabilities. In International Conference on Multimodal Interaction, 23,0,9–13; https://doi.org/10.1145/3610661.3616236 (2023).

60.

Robinson T, Wakely L, Marquez J, Rae K. Surviving, not thriving: a qualitative analysis of parents’ perceptions of physical activity participation for rurally residing children with a disability. Rural Remote Health. 2018;18:4536. https://doi.org/10.22605/RRH4536.CrossRefPubMed

61.

Clasquin-Johnson MG, Clasquin-Johnson M. How deep are your pockets? Autoethnographic reflections on the cost of raising a child with autism’. Afr J Disabil. 2018;7(0):a356. https://doi.org/10.4102/ajod.v7i0.356.CrossRef

62.

McKenzie JA, Abrahams T, Adnams C, Kleintjies S. The intellectual disability in South Africa: the possibilities and limits of democratic rights. Tizard Learn Disabil Rev. 2019;24:4,204–12. https://doi.org/10.1108/TLDR-04-2019-0015.CrossRef

Title: Exploring information needs among family caregivers of children with intellectual disability in a rural area of South Africa: a qualitative study
Authors: Mantji Juliah Modula
Mpho Grace Chipu
Publication date: 01-12-2024
Publisher: BioMed Central
Keywords: Disorders of Intellectual Development
Intellectual Disability
Published in: BMC Public Health / Issue 1/2024
Electronic ISSN: 1471-2458
DOI: https://doi.org/10.1186/s12889-024-18606-7

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Exploring information needs among family caregivers of children with intellectual disability in a rural area of South Africa: a qualitative study

Abstract

Background

Methods

Results

Conclusions

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

Please log in to get access to this content

Other articles of this Issue 1/2024

The role of social support in antiretroviral therapy uptake and retention among pregnant and postpartum women living with HIV in the Greater Accra region of Ghana

Incomplete tuberculosis reporting and registration to the surveillance system in southwestern China of Yunnan Province: an inventory survey

An experimental game to assess hunter’s participation in zoonotic diseases surveillance

Assessing family function: older adults vs. care nurses: a cross-sectional comparative study

Associations between cardiovascular diseases and cancer mortality: insights from a retrospective cohort analysis of NHANES data

Examining determinants of stunting in Urban and Rural Indonesian: a multilevel analysis using the population-based Indonesian family life survey (IFLS)