Exploratory study of stigma as a potential barrier to accessing care for children with Attention-Deficit/Hyperactivity Disorder
Date
2021-12
Authors
Journal Title
Journal ISSN
Volume Title
Publisher
Stellenbosch : Stellenbosch University
Abstract
ENGLISH ABSTRACT: Attention-Deficit/Hyperactivity Disorder (ADHD) is a complex psychiatric disorder which affects
approximately 5% of children worldwide. When left untreated, ADHD is linked to negative
intrapersonal, interpersonal, and academic outcomes. In South Africa, while mental health services
do exist in the community, many children with ADHD do not receive any treatment.
Misperceptions regarding ADHD may cause children and their families to experience stigma due
to their diagnosis, which may discourage families from seeking treatment. This study sought to
address the knowledge gap which exists around stigma and ADHD in South Africa and explore
the ways in which this affects help-seeking behaviour.
A mixed-method study was conducted consisting of three self-administered questionnaires and a
semi-structured interview. Twenty-six parents of children screened by Goldilocks and The Bear
Foundation (#gb4adhd) and 19 educators from schools where #gb4adhd has rendered services
completed i) a demographic questionnaire, ii) The Knowledge of Attention Deficit Disorders Scale
(KADDS) and iii) The Barriers of Access to Care Evaluation (BACE-3). Of these, 12 parents and
six teachers participated in a semi-structured follow up interview.
Parents and educators showed poor knowledge of ADHD, scoring 37% of items regarding overall
knowledge of ADHD correctly. Educators scored significantly higher than parents on all domains
including knowledge of symptoms and diagnosis (64.30% vs 45.30%), treatment (48.70% vs
35.20%), associated features (43.20% vs 23.80%) and overall knowledge of ADHD (48.60% vs
28.40%). The most frequently reported barriers to accessing treatment were the financial cost
involved, wanting to solve their/their children’s difficulties themselves, concerns about the available treatment and worries about seeming weak for accessing treatment. Instrumental barriers
were found to be more significant than stigma-related barriers.
Participants described stigma as the recognition of difference and being labelled which leads to
bullying, exclusion and being overlooked. Children with ADHD experienced lowered self-esteem
and isolation. Families of children with ADHD expressed changing their day-to-to routine in order
to avoid stigmatizing reactions from the community and increased emotional hardship. Financial
barriers, lack of help, difficulties knowing where to access help, and lack of education about
ADHD were highlighted as significant barriers to accessing treatment. Parents expressed a need
for increased awareness and empathy in the community, and for ADHD to be normalised.
Suggested methods for addressing the stigma included increasing awareness and education through
using mass-media, role models and public health initiatives, and was thought to be the collective
responsibility of government, educators, and parents.
Findings from this study indicate that stigma does play a role in the under-utilisation of treatment
but does not account for all reasons that children do not receive help. Other additional factors such
as financial constraints, poor awareness and lack of parental support pose significant barriers.
Stigma could be viewed less as a barrier to treatment, and more as a barrier to overall wellbeing
due to its extensive impact on the child and family’s lives. Recommendations for multi-stakeholder
collaboration to identify effective culturally and contextually relevant initiatives to decrease
stigma, increase awareness and enhance service provision are proposed to decrease barriers to
accessing treatment.
AFRIKAANS OPSOMMING: Aandagtekort hiperaktiwiteitsteuring (ATHS) is ‘n komplekse psigiatriese diagnose wat wêreldwyd ongeveer 5% van skoolgaande kinders affekteer. Dit word aanvaar dat die prevalensie in Suid Afrika soortgelyk is. Indien ATHS nie behandel word nie, het dit ‘n negatiewe impak op intrapersoonlike, interpersoonlike en akademiese funksionering, sowel as die individu se lewenskwaliteit. Alhoewel psigiatriese gesondheidsorgdienste wel beskikbaar in Suid-Afrika is, is daar steeds baie kinders met ATHS wat nie die nodige behandeling ontvang nie. Dit kan moontlik as gevolg van ‘n gebrek aan bewustheid en kennis van die diagnose, of ‘n gebrek aan toegang tot die nodige gesondheidsorg wees . Alhoewel ATHS deeglik nagevors is, en wêreldwyd aanvaar word as ‘n erkende diagnose, bly dit ‘n omstrede onderwerp met vele wanopvattings. Dié wanopvattings mag veroorsaak dat kinders met ATHS en hul families stigma ervaar. Kinders kan as “stout”of “dom” beskryf word. Die vrees wat families vir moontlike negatiewe reaksies en moontlike diskriminasie het, kan hulle ontmoedig om behandeling te soek . Hierdie studie poog om die kennisgaping in Suid-Afrika rakendeATHS, en die gepaardgaande stigma, te ondersoek. Verder poog die studie ook om te bepaal hoe diè aspekte toegang tot psigiatriese sorg beingvloed. Die “Goldilocks and the Bear Foundation” (#gb4adhd) is ‘n Suid-Afrikaanse welsynsorganisasie wat gratis psigatriese sifting (spesifiek gefokus op ATHS) en intervensies aan minderbevoorregtes lewer. Voorlopige navorsing wat deur #gb4adhd gedoen is, het bevind dat 2.7% van die kinders in die program aan die diagnostiese kriteria vir ATHS voldoen. Dit is laer as die aanvaarde internasionale prevalensie.
AFRIKAANS OPSOMMING: Aandagtekort hiperaktiwiteitsteuring (ATHS) is ‘n komplekse psigiatriese diagnose wat wêreldwyd ongeveer 5% van skoolgaande kinders affekteer. Dit word aanvaar dat die prevalensie in Suid Afrika soortgelyk is. Indien ATHS nie behandel word nie, het dit ‘n negatiewe impak op intrapersoonlike, interpersoonlike en akademiese funksionering, sowel as die individu se lewenskwaliteit. Alhoewel psigiatriese gesondheidsorgdienste wel beskikbaar in Suid-Afrika is, is daar steeds baie kinders met ATHS wat nie die nodige behandeling ontvang nie. Dit kan moontlik as gevolg van ‘n gebrek aan bewustheid en kennis van die diagnose, of ‘n gebrek aan toegang tot die nodige gesondheidsorg wees . Alhoewel ATHS deeglik nagevors is, en wêreldwyd aanvaar word as ‘n erkende diagnose, bly dit ‘n omstrede onderwerp met vele wanopvattings. Dié wanopvattings mag veroorsaak dat kinders met ATHS en hul families stigma ervaar. Kinders kan as “stout”of “dom” beskryf word. Die vrees wat families vir moontlike negatiewe reaksies en moontlike diskriminasie het, kan hulle ontmoedig om behandeling te soek . Hierdie studie poog om die kennisgaping in Suid-Afrika rakendeATHS, en die gepaardgaande stigma, te ondersoek. Verder poog die studie ook om te bepaal hoe diè aspekte toegang tot psigiatriese sorg beingvloed. Die “Goldilocks and the Bear Foundation” (#gb4adhd) is ‘n Suid-Afrikaanse welsynsorganisasie wat gratis psigatriese sifting (spesifiek gefokus op ATHS) en intervensies aan minderbevoorregtes lewer. Voorlopige navorsing wat deur #gb4adhd gedoen is, het bevind dat 2.7% van die kinders in die program aan die diagnostiese kriteria vir ATHS voldoen. Dit is laer as die aanvaarde internasionale prevalensie.
Description
Thesis (MA) -- Stellenbosch University, 2022.
Keywords
Mental health services – South Africa, Attention-deficit-disordered children – South Africa, Stigma (Social psychology) – South Africa