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6. Considerations – Subgroups

6.2 Aboriginal and Torres Strait Islander peoples

Clinical Questions

Although a specific question was not developed during consumer consultation, the importance of culturally sensitive identification, diagnosis and treatment of ADHD in Aboriginal and Torres Strait Islander peoples was recognised by the GDG to be of critical importance.

Clinical practice gaps, uncertainties and need for guidance

ADHD is present in almost all regions of the world (Polanczyk et al., 2007), indicating that it is not a culturally specific phenomenon. ADHD is a neurodevelopmental condition diagnosed based on observable symptoms. However, different cultures may view symptoms differently. Some cultures view mental health as a holistic concept beyond the notion of symptoms and functional impairment. This is the case for Aboriginal and Torres Strait Islander peoples, for whom mental health interconnects with numerous domains, including spiritual, environment, country, community, cultural, political, social-emotional and physical health (Dudgeon et al., 2014; Loh et al., 2017).

Currently, there is a lack of research on understanding, identifying, assessing and treating ADHD in Aboriginal and Torres Strait Islander peoples (Loh et al., 2016). This lack of knowledge may result in over-diagnosis or under-diagnosis and cause harm to Aboriginal and Torres Strait Islander peoples through stigma or a lack of treatment. For example, there could be misidentification of symptoms that could be otherwise considered culturally appropriate behaviours and beliefs. There is a need to provide culturally appropriate and competent care to all.

This ADHD guideline has been informed by the report Working Together: Aboriginal and Torres Strait Islander Mental Health and Wellbeing Principles and Practice (Dudgeon et al., 2014) and follows the nine principles identified by this report:

1

A holistic framework

Viewing Aboriginal and Torres Strait Islander health in a holistic framework that considers aspects of mental health and physical, cultural, community, environmental and spiritual health and connection both inwards and outwards. This approach is aligned with the approach of this guideline which take into consideration a person’s broad context, their physical and mental health, lifestyles, cultural identity and relationships.
2

Self-determination

This principle is aligned with the person-centred and family-centred care approach contained within this guideline, which focuses on personal choice based on individual preferences, needs and goals. Within the context of Aboriginal and Torres Strait Islander mental health, self-determination must be considered in light of alignment with a human-rights approach to healthcare. This means taking diagnostic, treatment and policy leadership from Aboriginal and Torres Strait Islander professionals about community beliefs, decisions and opinions of people about their own health and wellbeing. Consistent with this principle, this section and specific recommendations were co-written by Aboriginal experts.
3

Culturally valid understandings of mental health

The need for culturally valid understandings of mental health problems to shape diagnosis and treatment is the key driver of this section
4

Human rights

The human rights of Aboriginal and Torres Strait Islander peoples are at the forefront of this notion, specifically the right to mental health and strong social and emotional wellbeing.
5

Acknowledging trauma

The ongoing impacts of trauma and loss since the European invasion and settler colonisation, including continuing intergenerational effects, have resulted in disruption to cultural wellbeing. These effects are far reaching and can impact broadly on mental health. Specific social, emotional and cultural impacts can include disconnection from Country, destruction of cultural practices and language, removal of traditional coping mechanisms, ongoing discrimination and substantial socio-economic disadvantage. These all have a significant negative influence on mental health and access to appropriate and culturally safe mental health treatment.
6

Acknowledging systemic disadvantage and injustice

The ongoing impacts of genocide, racism, stigma, environmental adversity and social disadvantage are stressors that can contribute negatively to mental and emotional wellbeing. Racism can result in reduced help-seeking behaviour, impacting the identification, assessment and treatment of ADHD. Mental illness has long been associated with stigma and may result in a double impact perpetuating negative mental health and wellbeing.
7

Acknowledging the importance of Aboriginal and Torres Strait Islander family and kinship

This principle is aligned with this guideline which considers the family context and relationships and inclusion of family, partners and extended kinship in the assessment and treatment of people with ADHD.
8

Acknowledging diversity

While there are some commonalities across the different Aboriginal and Torres Strait Islander cultures, such as concepts of the Dreamtime, Songlines and certain philosophies of living, there are numerous groupings and there is no single Aboriginal or Torres Strait Islander culture or group. These peoples live in diverse settings including urban, rural or remote, or traditional lifestyles. The degree of cultural connection is also extremely varied, being highly influenced by historical and current discrimination, with connectedness (and disconnectedness) holding high levels of influence over social and emotional wellbeing (Murrup-Stewart, Whyman, Jobson, & Adams, 2021). This has implications for the valid development and use of tools for identifying and assessing ADHD and has significant implications for service provision.
9

A focus on strengths

The final principle notes the strengths of Aboriginal and Torres Strait Islander peoples including creativity, resilience, endurance, and the deep connection with the environment. These are reflected in the strengths-based approach of the guideline. Where possible, guideline recommendations have aimed to instil hope and motivation and focus on the positive aspects of ADHD.

When working with Aboriginal and Torres Strait Islander peoples, clinicians should consider how mental illness is framed, and how treatment (clinical and cultural) can be articulated as building on the already existing strengths, beliefs and practices held within Aboriginal and Torres Strait Islander cultures.

Summary of narrative review

Prevalence

As noted above, Aboriginal and Torres Strait Islander peoples have faced considerable adversities that stem from the legacies of colonisation. Aboriginal and Torres Strait Islander peoples currently experience higher rates of physical health issues and social and emotional wellbeing concerns than non-Indigenous Australians (ABS, 2017). Aboriginal children are around 30% more likely than non-Indigenous children to have a disability (DiGiacomo et al., 2013).

There has been limited research on ADHD in Aboriginal and Torres Strait Islander peoples, including epidemiological studies of prevalence. The WA Aboriginal Child Health Survey reported that Aboriginal children had a higher risk of clinically significant hyperactivity problems (15.8%) compared with 9.7% for non-Aboriginal children, with ADHD more common in boys than girls (Zubrick et al., 2004). This study used the Strengths and Difficulties Questionnaire (SDQ), which broadly measures emotional and behavioural problems and has a hyperactivity subscale commonly used to screen for ADHD.

The validity of using the SDQ in Aboriginal and Torres Strait Islander people has been explored in urban New South Wales. They found many questions were appropriate, but some were considered inappropriate, and some important areas of emotional and behavioural problems were not necessarily captured by the SDQ (Williamson et al., 2014; Williamson et al., 2010). Construct validity only reached ‘acceptable’ levels (Williamson et al., 2014). Given there is no single Aboriginal or Torres Strait Islander ‘group’ the generalisability of the SDQ beyond urban NSW is unclear and potentially may be different in rural and remote areas.

A study of a population of NSW imprisoned people identified that a higher proportion of Aboriginal prisoners were identified as having adult ADHD (31%) than non-Aboriginal adults (10%) (Moore, Sunjic, Kaye, Archer, & Indig, 2016a). Screening was conducted using the Adult ADHD Self-rating Scale (ASRS), and assessment using the Mini-International Neuropsychiatric Interview. The study authors proposed that the study findings may be invalid due to inappropriate screening and assessment measures adapted from Western Methods, and they noted the considerable lack of research in ADHD in this population. Notably, the rate of ADHD identified for non-Aboriginal adults was much lower than that reported in international studies of ADHD in prisoners (Young, Moss, Sedgwick, Fridman, & Hodgkins, 2015a), suggesting that the rate of identification of ADHD in Moore et al. may be somewhat lower than in other studies.

There is a lack of norms for ADHD symptom questionnaires and other tools commonly used for screening and assessment within most Aboriginal and Torres Strait Islander groups. We are not aware of any other psychometric studies of ADHD-specific questionnaires in Aboriginal and Torres Strait Islander peoples. We note the Westerman Aboriginal Symptom Checklist for Youth (WASC-Y) (13–17 years) is a culturally validated checklist for the mental health of Aboriginal youths (covering the domains of depression, suicidal behaviours, drug and alcohol use, impulsivity, anxiety and cultural resilience as a moderator of risk).  Although some items from the WASC-Y may have utility as proxies for ADHD symptoms (for example, impulsivity, hyperactivity and agitation) (Little, 2007) we are not aware of any validation in samples of youths with ADHD.  Therefore, the prevalence of ADHD in different Aboriginal and Torres Strait Islander communities remains unclear.

There is a considerable lack of research in this area to understand the true prevalence of ADHD in Aboriginal and Torres Strait Islander peoples. Specifically, targeted screening and assessment measures for ADHD in Aboriginal and Torres Strait Islander peoples need to be developed.

Presentation and identification

Some symptoms of ADHD, as defined by the Diagnostic and Statistical Manual of Mental Disorders Fifth edition (DSM-5), may not be considered problematic by Aboriginal and Torres Strait Islander peoples, as these may be viewed as usual and appropriate responses to the environmental context. A qualitative study from Perth, which explored Aboriginal and Torres Strait Islander perspectives on ADHD, found that hyperactivity symptoms were considered problematic and could negatively impact on community participation and everyday activities, such as shopping, and also on children’s ability to learn at school (Loh et al., 2017).

The study found that high levels of activity may be appropriate or viewed positively in some settings, such as in the playground, but not in other settings, such as when learning in class, where they are expected to sit still, focus and pay attention to instructions. Difficulties with modifying characteristics for different situations may indicate assessment and treatment is required.

However, Aboriginal culture is very inclusive, with a high tolerance for individual differences and a dislike of labelling. When a young person has difficulties, there may be a reluctance to seek help unless the difficulties are extreme. This can be associated with concerns about accessing healthcare and feelings of shame that can be associated with diagnostic labels.

On the other hand, there is a cultural belief in helping people reach their full potential and so people may be open to treatments that can help young people achieve this. Much of the success of this can be attributed to how assessment and treatment is framed, with cultural safety paramount.

The identification of ADHD in Aboriginal and Torres Strait Islander peoples may be difficult due to the lack of screening tools, as noted above. Aboriginal and Torres Strait Islander adolescents and adults may have high levels of co-occurring problems often found in people with ADHD, such as substance use disorders, trauma disorders and high levels of suicidal behaviour (Azzopardi et al., 2018). Due to the link between these issues and the widespread violent and ongoing influence of settler-colonisation, delineation between the cause of these impacts can be complex.

ADHD may not be recognised or considered even when assessment and treatment are sought. There is a lack of research in this area, but it is likely that ADHD is commonly overlooked in Aboriginal and Torres Strait Islander peoples when presenting for other problems. Furthermore, the process of identification of people as Aboriginal and/or Torres Strait Islander has severe challenges resulting in under-identification of Aboriginal and Torres Strait Islander peoples in health settings (Health & Welfare, 2013).

There may be little knowledge of ADHD in some Aboriginal and Torres Strait Islander communities. More education about ADHD symptoms and impacts is needed in Aboriginal and Torres Strait Islander communities (Loh et al., 2017).

Assessment

Some Aboriginal and Torres Strait Islander people may fear and/or be reluctant to access services for assessment and treatment as a consequence of the practices of eugenics and the Stolen Generations where children were removed from families and institutionalised (Loh et al., 2017). This occurred into the 1980s and is in living memory and may result in people with ADHD not accessing assessment and treatment.

Discrimination, racism and ignorance likewise influence the experiences of Aboriginal and Torres Strait Islander people when accessing mental health supports (Murrup‐Stewart, Searle, Jobson, & Adams, 2019). There is a lack of research on culturally sensitive assessment for Aboriginal and Torres Strait Islander people. More broadly, assessment needs to be systemic and consider the impact of individual, family and community factors to avoid inadequate or incorrect diagnosis. Access to culturally sensitive assessment and treatment services is required (Loh et al., 2017).

As noted above, the validity of screening/assessment tools needs careful consideration and moves to simply ‘adapt’ current tools are likely to be insufficient. The development of a specific cultural test for ADHD for Aboriginal and Torres Strait Islander people should be considered.

The following general principles of assessment could be considered (Dudgeon et al., 2014):

  • Assessment needs to be holistic, considering physical, mental, emotional, social, cultural, family and Country connections (Dudgeon et al., 2014).
  • Assessment should consider cultural identity, cultural explanations of ADHD symptoms, cultural factors associated with psychosocial and environmental functioning, cultural elements and power differentials in the relationship between the person and the practitioner, and an overall cultural assessment (American Psychiatric Association, 2013; Dudgeon et al., 2014).
  • A cultural understanding of the problem should consider psychosocial stressors, religion, spirituality, age groups and gender (Dudgeon et al., 2014).

Assessment should include consideration of whether the person’s presentation is worsened due to discrimination based on race/ethnicity or sexual orientation.

A careful assessment of physical health is also required, given high levels of physical health issues in some Aboriginal and Torres Strait Islander peoples, including hearing problems which may present similarly to ADHD inattentive symptoms (Vos, Barker, Begg, Stanley, & Lopez, 2009). Each of these assessments needs to take place in the context of practitioner cultural humility (Watego, Singh, & Macoun, 2021), moving beyond the current model of cultural competency (Bogle, Rhodes, & Hunt, 2021), which requires practitioners to reflect on their own cultural identities, privileges and biases.

Further helpful information can be found in the report Working Together: Aboriginal and Torres Strait Islander Mental Health and Wellbeing Principles and Practice (Dudgeon et al., 2014).

Treatment

There is a lack of evidence for psychosocial interventions for ADHD in Aboriginal and Torres Strait Islander communities. Related research on parent-training programs that have been culturally tailored to Aboriginal and Torres Strait Islander communities (for example, a variation of the Group Triple P) suggests that they can be culturally acceptable and have positive outcomes in terms of reducing children’s symptoms (Andersson et al., 2019).

One study found that Aboriginal children and adolescents in Western Australia were less likely to receive stimulant medication than their non-Indigenous peers (Ghosh, Holman, & Preen, 2015). People with both Aboriginal parents were two-thirds less likely to have received stimulants compared to those with non-Aboriginal parents. Those with only an Aboriginal mother were one-third less likely to have received stimulants compared to those with non-Aboriginal parents. Stimulant use was lower in non-urban areas (Ghosh et al., 2015).

This suggests that Aboriginal children and adolescents with ADHD may be under-treated, which likely relates to numerous factors, including cultural beliefs about the use of medication for symptoms and other systemic barriers. No research on medication treatment for Aboriginal and Torres Strait Islander adults was identified.

Consideration of cultural, pharmacological and non-pharmacological interventions should occur (Dudgeon et al., 2014). The wishes of parents, families and people with ADHD regarding treatment options (for example, cultural, pharmacological versus non-pharmacological treatments and their combination) should be prioritised (Loh et al., 2017).

Non-pharmacological interventions need to be culturally sensitive and appropriately tailored and localised for Aboriginal and Torres Strait Islander people, families and communities being treated (Loh et al., 2017). Interventions should include parents/families, Elders and kinship networks where appropriate to maximise treatment effectiveness given strong family values in Aboriginal and Torres Strait Islander culture (Loh et al., 2017).

Clinicians should ensure they apply this ADHD guideline in a culturally sensitive way, which may include linking with Aboriginal Health Services (AHS), Aboriginal workforces or organisations. This should include seeking supervision and collaborating with Aboriginal and Torres Strait Islander mental health clinicians. Furthermore, research shows that Aboriginal and Torres Strait Islander people point to the most effective social and emotional wellbeing programs and services being those that provide a wide and holistic spectrum of supports, including creative practices, advocacy, practical socio-economic supports (Murrup‐Stewart et al., 2019).

Recommendations

Clinical considerations for implementation of the recommendations

Limited access to culturally competent and safe services and/or Aboriginal and Torres Strait Islander clinicians may limit the ability to implement these recommendations in some areas. Health equity for Aboriginal and Torres Strait Islander peoples may be impacted by a lack of understanding, bias, screening, assessment and treatment of ADHD resulting in poor outcomes. A lack of research negatively impacts on the ability to identify, assess and treat ADHD in Aboriginal and Torres Strait Islander peoples.

Next 6.3 ADHD in people with co-occurring substance use disorders