Building health literacy


In the last lesson, we talked about how the time it takes to meet unmet health needs can lead to more things going wrong in the meantime. For instance, if a person with HIV is grappling with insecure income and housing issues, they might not take part in screening for preventable cancers, leading to a late cancer diagnosis. So meeting needs in a timely fashion is essential for promoting quality of life and reducing or preventing health inequities.

However, there is one major challenge to getting needs met, and that is the complexity of the health care and social support systems that people with HIV are required to navigate. HIV peer navigators and HIV community organisations play a key role in helping people with HIV to build health literacy enabling them to navigate complex systems of HIV care.

Defining health literacy

Every person and group has their own understandings of health and illness, along with skills for interacting with other people. These skills and understandings come into play when we access health care. They are resources people draw on when trying to navigate complex systems of health care and social support. So problems can arise when programs and services don’t appreciate the diversity of health beliefs that exists in the community. Suddenly we start talking about ‘people with low health literacy.’

NAPWHA has developed a Health Literacy Framework for the HIV sector, with personal health literacy in the centre, surrounded by other levels, including community, organisational, sectoral/health system, and societal health literacy. It considers both general understandings of health, illness, and health care, as well as specific understandings of HIV. The Health Literacy Framework helps programs and services anticipate the diverse skills and understandings that clients and communities may hold. When we anticipate and respond to diverse understandings of health and HIV, we can do better at meeting health needs.

NAPWHA has used the framework in a project that seeks to build its own organisational health literacy. We are using what we learn to advocate in the HIV sector, health care system, and society. This training is a product of that initiative.

Cultural safety

Health literacy is closely related to cultural safety and cultural responsiveness.

According to the National Strategy 2020-25 () —

Cultural safety is determined by Aboriginal and Torres Strait Islander individuals, families and communities.

When there is cultural safety, Aboriginal and Torres Strait Islander clients feel safe that their cultural identity and heritage will not be denied or denigrated at any point during the course of care and service provision.

Culturally safe practice is the ongoing critical reflection of health practitioner knowledge, skills, attitudes, practising behaviours and power differentials in delivering safe, accessible and responsive healthcare free of racism.

NAPWHA recommends all staff receive cultural safety training from an Aboriginal and Torres Strait Islander enterprise.

Cultural responsiveness

Cultural responsiveness refers to programs and services recognising the diverse health skills and understandings of culturally and linguistically diverse (CALD) people and communities. This includes their health beliefs, health practices, cultural and language requirements. (For example, a cultural requirement might include only being seen by a clinician of the same gender.)

The term CALD refers to ‘communities whose members identify as having particular cultural or linguistic affiliations by virtue of their place of birth, ancestry or ethnic origin, religion, preferred language or language spoken at home’ (Victorian Government <2009>).

The term is deliberately broad. It tries to avoid unhelpful stereotypes that came to be associated with terms like ‘migrant’ and ‘ethnic’ in the late 1990s.

However, there are downsides to this term. For the most part, people don’t identify with the term CALD. Second, it is a mistake to refer to ‘the CALD community,’ as the term covers many diverse people and groups.

A commitment to cultural responsiveness means a lifelong process of listening to and learning from clients and communities. It means being flexible and changing our approach to meet clients and communities where they are at.

It recognises that care providers (both people and organisations) have our own culture — an everyday, taken-for-granted way of doing things. Sticking firmly to this culture can create barriers for clients who need us to work differently.

Navigating a fragmented system of care

People often begin their care journey in the following places:

  • General practitioners
  • Pharmacies
  • Practice nurses
  • Community health services

Clients/patients may be referred for additional investigation by:

  • Pathology (testing) providers
  • Specialists
  • Surgeons

Finally they may need to access tertiary care:

  • Hospital clinics
  • Surgery
  • Inpatient care

That’s just the health system! These services are surrounded by social services and HIV support services:

  • Centrelink and Medicare
  • Employment services
  • Housing authorities
  • Social work and community services
  • HIV services including peer support
  • Many, many others…

Supporting individual clients

Part of the challenge for people with HIV is that these services rarely coordinate directly with each other. Instead, they write letters and leave it to the individual client/patient to advocate for their needs to be met. In the HIV Peer Navigation training, the Client Work module covers key skills that HIV peer navigators use to advocate for clients and assist clients to develop their own self-advocacy capacity.

Changing the health and social care system

We can also work to make the health system more understanding of the diverse needs of clients/patients with HIV. NAPWHA’s Health Literacy Framework project was a major piece of organisational learning that sought to understand how we can build HIV health literacy in the HIV sector, the broader health system, and society. You can learn more about the project here.

Mapping the care and support systems

In an informal consultation (a comment thread on Facebook) we asked experienced practitioners in HIV positive health promotion to identify all the different supports a person with HIV might one day need. If you are working as an HIV Peer Navigator or supporting people with HIV to meet their health needs, you will build up a mental and perhaps even a written map of services in these categories.

Service categories

  1. Case management (if available)
  2. Alcohol and Other Drug (AOD) service
  3. Harm reduction service / needle and syringe program (NSP)
  4. Mental health – psychology
  5. Mental health – counselling 
  6. Psychiatry
  7. Social work
  8. Physiotherapy
  9. Other Allied Health
  10. Financial counsellor
  11. Disability advocacy service
  12. Anti-discrimination agency
  13. Tenants advice/support
  14. Public health unit (support with behaviours that may put others at risk)
  15. Legal aid office
  16. Community legal centre
  17. HIV/AIDS Legal Clinic
  18. Positive social events
  19. The Institute of Many (TIM) and TIM Women
  20. Aboriginal Medical Service
  21. Refugee health service
  22. Telephone Interpreter Service (TIS)
  23. Peer support for Indigenous clients (may not be an HIV peer)
  24. Bicultural workers for culturally diverse clients (may not be an HIV peer)
  25. S100 General Practitioner
  26. Trustworthy pharmacist
  27. HIV specialist (if required)
  28. Other specialists as required
  29. NDIS plan manager (if relevant)
  30. Aged care services (if relevant)
  31. HIV and ageing supports
  32. Health Care Complaints Commission (or similar in your state/territory)
  33. NDIS Commission (for complaints, if relevant)
  34. Positive organisation (if you’re not based at one)
  35. HIV Peer Navigator (if you’re not one yourself)
  36. AIDS Council (if relevant)
  37. Positive Leadership Development Institute (PLDI)
  38. Disability Employment Service
  39. Domestic and family violence service
  40. Women’s health centre including gynaecologist
  41. Relationships Australia
  42. Phoenix/Genesis group (or similar for newly-diagnosed people)
  43. Centrelink – social worker
  44. Hospital ID ward
  45. Drug Interaction Checker
  46. Peer-based organisations e.g. sex worker, harm reduction
  47. NDIS Supports Coordinator
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