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2. Diagnosis

2.3 Information needs after the diagnosis of ADHD

Clinical Questions

1. What are the information, support and educational needs of those diagnosed with ADHD, family, carers, and agencies supporting people with ADHD?
2. Is there a role for consumer groups (e.g. online forums)?

Clinical practice gaps, uncertainties and need for guidance

The NICE ADHD guideline (NICE, 2018) identified the need for information targeting various groups, with the objectives of:

  • better understanding symptoms
  • reducing stigma and prejudice
  • promoting understanding, better treatment and support in settings such as education, physical health care, and employment
  • increasing self-understanding.

There is an opportunity to provide positive information, which can mitigate stress experienced by families and individuals with ADHD, and reduce stigma associated with the condition.

Summary of narrative review

There is no robust research evidence on what information and support should be routinely provided at diagnosis to people with ADHD. Parents of children with ADHD have expressed the need for concise, tailored and reliable information (Ahmed, Borst, Yong, & Aslani, 2014). This includes information on the causes, mechanisms and potential impacts of having ADHD (Ahmed et al., 2014).

There is a clear need to provide information to the person with ADHD, parents, families, educational institutions and workplaces to educate people about the symptoms and functional impact of ADHD, treatment, and support required, and to dispel myths. Given a lack of research in this area, the NICE guideline recommendations have been adapted to suit the Australian context.

Consumer groups provide a major avenue of information and support for individuals and families, as well as an entry point to gain extra information and support in educational institutions such as universities, mental health services and workplaces. The internet and online peer support groups also provide information on ADHD to consumers and those involved in ADHD support. There are currently no adequately resourced ADHD-specific helplines to provide services for all Australians with ADHD. The ADHD Foundation runs the National ADHD Helpline, but it relies solely on volunteers, so does not have the capacity to service the whole Australian community.

There is a lack of Australian information on ADHD available to those for whom English is their second language or for Aboriginal and Torres Strait Islander communities (see section 6.2). There is also a lack of information for older adults. Support services could be delivered through psychoeducation and support and by nurse educators, social workers, and peer support workers.

Consumer groups

Consumer groups are voluntary organisations that promote the interests of people, carers and consumers through a variety of means. Consumer groups provide opportunities for people with a lived experience and carers to share experiences, utilise self-help, and peer support and access health-related information resources (Allsop, Jones, & Baggott, 2004; Jones, 2008).

Consumer groups also conduct research and advocate on behalf of the consumers they represent to stimulate the development of health services that are responsive to the needs of those consumers (Allsop et al., 2004; Jones, 2008). Consumer groups rely on funding or donations.

The composition of consumer group falls into three broad membership categories:

  1. national alliance groups, which are overarching umbrella organisations that act on behalf of geographically dispersed consumer organisations
  2. population-based groups consisting of individual members within a broad population category such as carers
  3. condition-based groups consisting of individual members living with or having a special interest in a particular health disorder, such as ADHD (Jones, Baggott, & Allsop, 2004).

In Australia, ADHD consumer groups represent diverse sections of the ADHD community. There are three nationally registered bodies (the ADHD Foundation, ADHD Australia, and the National ADHD Forum) and several state organisations, many of which have an online presence.


Clinical considerations for implementation of the recommendations

Whilst implementing these recommendations will increase costs, adequately educating people with ADHD will likely improve their functioning and thus reduce overall costs to the community and the health system. A co-ordinated approach connecting multidisciplinary health professionals with families, educational organisations and workplaces is likely to be accepted by stakeholders. However, it may be difficult to ensure that this approach is delivered equitably to those in all geographical regions, for all sociocultural subgroups and at socio-economic levels.

Next Section 3 Treatment and support