This cross-sectional, descriptive study involved a questionnaire interview with 79 adults (18 years and older) biological parents of children (aged 5–17 years) with an established clinical diagnosis of ADHD, as per the Diagnostic and Statistical Manual (DSM 5) criteria²⁰ who were referred to study researcher. Inclusion criteria were English-speaking parents of children with ADHD at a specialist child psychiatry outpatient service and had been under treatment for a minimum of 6 months. The diagnosis of ADHD was based on the clinical assessment by using DSM 5 criteria by senior psychiatry registrars under the supervision of or by a child psychiatrist. Carers who were not biological parents were not included in this study.

All parents were invited to participate in the study, with survey being completed on their clinical visit. All surveys were completed by the principal investigator (N.R.) after written informed consent was obtained, with data being collected from May 2017 to March 2018.

The quantitative data from the socio-demographic questionnaire were entered and analysed by using the Statistical Package for Social Sciences version 26 software by using descriptive statistics. The variables from the KADDS questionnaire were also descriptively analysed by using the number and per cent for the categorical variables, with their frequency distribution being examined, and the means with standard deviation, medians and inter-quartiles ranges being used, as appropriate. The three sub-groups of the KADDS (knowledge and misconceptions about diagnosis, treatment and associated factors) were compared by conducting chi-square tests on t-tests or Wilcoxon rank sum test, with a p < 0.05 being considered statistically significant. The data are presented in three sections: (1) correct knowledge, (2) incorrect knowledge (misconceptions) and (3) associations between misconceptions with parent characteristics.

The study was approved by the University of KwaZulu-Natal’s Biomedical Research Ethics Committee (Ref BE036/17). Permission was also obtained from the Department of Health and written informed consent from the parents.

The majority of parents were 41–50 years old (49.4%), female (n = 57, 72.2%), married (59.5%) and black (49.4%); did not have a tertiary education (n = 66, 83.5%); and had two children (45.6%). Seven (8.9%) of the parents had two or more children with ADHD, whereas the majority (n = 71, 91.1%) had only one affected child (Table 1). The sociodemographic data of the parents are presented in Table 1.

Table 2 shows the summary of the data on those parents who consulted a faith healer about their child’s condition, with 26 (32.9%) parents indicating that they had done so. Twenty-two (84.6%) of the 26 parents had done so before seeking medical treatment, eight (36.4%) having found it useful and 16 (76%) noting that they had been advised to seek psychiatric treatment at a health facility.

Table 3 indicates that most of the 90 children were male (n = 74, 82.2%). In terms of age, 57.7% were 10 years and older, 67.7% (n = 61) attended mainstream schools, and although 87.7% had been diagnosed at least 2 years previously, 95.5% had been on treatment for more than a year.

All the parents (N = 79, 100%) reported being informed of the diagnosis of ADHD by a medical doctor, with the majority being satisfied about obtaining information on the diagnosis (N = 77, 97.4%) and treatment (N = 76, 96.2%), but data on type and quality of information received were not collated. However, the majority reported experiencing stigma (N = 60, 75.9%) relating to their child’s illness. Although doctors (n = 79, 100%) and clinic staff (n = 79, 100%) were the most common providers of information, there were other sources (n = 79, 100%), such as teachers (n = 71, 89.8%), the media (n = 70. 88, 6%) (newspaper and television), the Internet (n = 45, 56.9%) and other parents (n = 36, 45.5%). Fifty-seven (72.1%) parents mainly attributed the cause of ADHD to a chemical imbalance in the brain, 21 (26.5%) to genetics, 27 (34.1%) to sugar use and 21 (26.6%) to being a spoilt child.

The participants’ KADDS scores (correct responses) were assessed for the three sub-scale scores and individual items and are summarised in Table 4.

The most common correct knowledge and incorrect responses (misconceptions) are indicated with their respective question (Q) number and statement from the KADDS.

The small sample size must be noted as a limiting factor.

In addition, the analysis of the parent’s socio-demographic factors and KADDS sub-scale scores is summarised in Table 5.

As per the World Health Organization, only 10% of people with neuropsychiatric conditions are estimated to have access to mental health services.²² In South Africa, there is a glaring lack of child mental health services, with faith healers playing an important role in trying to bridge that gap, as they are generally accessible. Providing mental health education for faith healers may facilitate appropriate and timeous referral faith healers maybe the first point of contact for parents when seeking an understanding of unusual behaviour.²³ In this study, 32.9% of parents seeking medical care at an urban facility consulted a traditional healer, further emphasising the critical role they play in the local socio-cultural context and the need to integrate them in a holistic health service. No studies on the extent of traditional health-seeking behaviour for children with ADHD were found.

All parents (100%) in this study claimed to have received information from the medical staff of the clinic, the other most common sources being schoolteachers (89.8%), the media (88.6%) and Internet (56.9%). Other studies reported the media (radio and television)^10,24 as being common sources, which suggests that access to suitably trained medical staff may vary between countries. The most common source of information in other studies is the media (radio and television),^10,24 which is in contrast to the findings of this study where all parents claimed to have received information related to ADHD from the treating medical staff of the clinic. Media is the third most common cause of information in this study. This may represent a form of subjective bias reporting from parents or suggests that parents in this context have less access to media for health education. This suggests that health care services need to ensure that appropriate psychoeducation and support around ADHD is provided as they appear to be the main source of information. This is critical in primary health care settings where parents may have even greater challenges accessing reliable knowledge sources.

Although all parents were aware of the ADHD diagnosis, the mean scores for the three sub-scales of 6.1 (symptom or diagnosis), 6.4 (treatment) and 6.9 (associated features) (maximum score 15, 9 and 12) suggest that there were still gaps in their knowledge.

These scores are consistent with the literature, which demonstrated that parents have knowledge but still harbour misconceptions relating to ADHD.^13,15,16 The current study found no association between educational level with improved knowledge on any KADDS sub-scales. This is contrary to the literature that higher education is a positive factor in health-seeking behaviour.²⁵ Traditionally studies suggest that while the parents recognised that there could be a behavioural problem with their children, their own educational levels may affect their health-seeking behaviour with relevant health authorities. Parents of lower educational and income levels appear to be less knowledgeable about appropriate treatment behaviour for their children in other international studies;^1,26,27 however, possibly, access to a specialist service with more individualised care may have modified this finding. The lack of positive association between education and better knowledge of symptom and treatment sub-scales suggests the need to in addition further explore this and other parental variables in a larger study that is possibly better placed at community-level services as access to care may also be measured in those contexts.

In line with other studies, this study showed some common parental misconceptions that are present in research from developed and developing countries.^10,16 The misconceptions regarding the sugar intake-associated symptoms of ADHD (most common misconception in this study), use of stimulant leading to addiction, reliance on punishment to bring behavioural change and outgrowing ADHD were common in this and other studies.^{28,29,30,31,32,33} An earlier American study suggested that black Americans strongly accepted the ADHD ‘sugar’ aetiology.³⁰ In the study the authors proposed that this may be because of factors such as different cultural thresholds and perception of bad behaviour, beliefs that ADHD is not a medical condition, discrimination, lack of trust of health professionals and economic constraints based on socio-cultural differences.^31,32 Perold and colleagues reported similar findings relating to ADHD and the sugar myth amongst teachers in South Africa, who believed that sugar was the cause and the children would outgrow the symptoms.¹⁸ This suggests that as health care workers, we need to provide more information on the role of diet, particularly sugar and ADHD symptoms. There is also a need for more and better qualitative studies to understand the influences that drive these misconceptions.

Another common misconception was related to the addiction potential of stimulants, as this may be associated with poorer medication adherence if the parents have concerns about the treatment options. In this study, 67% of parents believed that a prolonged use of stimulant medications leads to increased risk of substance addiction (i.e. drug, alcohol) in adulthood, and these findings being consistent with the literature.^30,34 This is an important misconception that should be more actively focussed in psychoeducation as it has treatment and prognostic implications. Parents need to be aware that untreated ADHD is a risk factor for substance use.³⁵ This study did not further explore the associations with regard to misconceptions and parental factors as the study sample size limits credibility of findings.

The findings of this study have important implications in planning various interventions about ADHD education, as parents are the most significant role players who influence child health outcomes. By providing accurate knowledge, relating to misconceptions, myths and misperceptions will fade and potentially alter the health-seeking behaviour of parents with children of ADHD. Ideally, paediatric mental health care should be integrated and available at community-based services to improve access and allow early referral of children requiring more complex care to specialist services and hence better utilising scarce mental health resources. This will enable parents to have better problem recognition, selection and utilisation of health resources.³ The psycho-education content on ADHD therefore needs to be reviewed to address common myths held by parents. We also need to consider if the gaps are because of insufficient staff training in communication skills and ADHD knowledge. We also need to provide information – including tailored information, avoiding use of jargon and inviting questions for clarification and providing psycho-education in the first language such as isiZulu for parents so that it bridges their gaps in knowledge.