Category Archives: Health Literacy

Liminality

Liminality in medicine is the idea that you can be between illness and wellness.

Paul Turner et al give the example of having a food allergy: people with allergies do not consider themselves fully ‘ill’ or entirely ‘well’, but something in between. They are typically “well” so long as they apply food safety skills to avoid their trigger food(s) – but a slip or mistake can lead to a reaction and potentially death from anaphylaxis.

With liminality, a young person feels set apart, or a family feels their child is different from others – this can impact on self image, social interaction, which in turn can lead to denial or other unhealthy coping strategies and adverse health outcomes.

[Sanders, Soc Sci Med 2019]

Non traditional medicine and alternative health beliefs

Non-disclosure of use of traditional, complementary and/or alternative medicine (TCAM) is found in 20 to 77% of studies. This has been attributed to an anticipated negative or dismissive response; assumption that health care professionals lack knowledge on the subject; or the HCP not asking.

HCPs who take the time to listen attentively and respectfully are more likely to have patients disclose TCAM use.

Some cultures/religions are more likely to use TCAM, and are also more likely to suffer from heath inequalities and stigma. If seen as ‘alternative’ and contrary to mainstream medicine, discussion might be perceived by both patient and doctor as irrelevant. If perceived within a more ‘integrative’ framework, it is more likely that TCAM use will be a topic for discussion. The transition from a “traditional-alternative” to a “traditional-integrative” approach to care is being promoted by the World Health Organization’s Traditional Medicine Strategy (2014–2023).

Tangkiatkumjai et al. suggested that TCAM use can be accompanied by an expectation of benefit; perception of safety; and dissatisfaction with conventional medicine. Perception of safety can of course be very misguided, eg interactions between herbal products and cancer drugs.

In oncology, integrative programs focus on quality of life-related concerns, eg chemotherapy-induced peripheral neuropathy, preoperative anxiety and postoperative pain. These programs have been shown to increase patient adherence to oncology treatment regimens, within a safe and effective environment.

Patient trust in their HCP has been shown to increase when asked directly about TCAM use.

Try the LEARN (Listen, Explain, Acknowledge, Recommend, and Negotiate) model, proposed by Berlin and Fowkes.

Non-judgmental approach essential – stereotypes, prejudices, and misconceptions may compromise the therapeutic relationship.

Other family/community voices that can be included?

“What are your goals of treatment with TCAM? Is your primarily goal to relieve your symptoms and improve your quality of life? Or is it to “fight” or cure the disease, prolong life, “strengthen” your immune system, or another goal?”

[Humility about failures/faults of conventional medicine!] [Ben-Arye, 2024]

Participatory medicine

Patient led campaign for better involvement of patients in their own care.

Manifesto has 5 principles:

  • Share and listen – acknowledge patients are experts in their own lives and bodies, use plain language.
  • Respect one another
  • Share information responsibly – help patients access the information they need, and respect confidentiality
  • Promote curiosity – be clear even when it is difficult to explain, encourage patients to do their own research and get involved in patient communities
  • Be a teambuilder – treat patients as collaborators, respect their goals, values and preferences

These are shared responsibilities, the patient has their own duty to be honest, ask questions, advocate themselves.

Institute of Medicine describes a continuously learning system (in respect of healthcare in the US), the second feature of which is Patient-clinician partnerships. This is explained as “engaged, empowered patients – a health care system anchored on patient needs and perspectives, and promoting the inclusion of patients, families and other care givers as vital members of the team“.

Unclear this happens on any significant level, especially when it comes to communication outside the hospital or clinic room. Studies have found that when patient portals or messaging systems are used, patients often respond with further questions or comments, which suggests unmet need and desire to engage further. Other studies have found that only a tiny minority of messages in such systems are initiated by the health care team, which suggests a reactive rather than active contribution to the partnership.

Overdiagnosis

Online survey of 400 people aged 50-70, only 2.6% of people could explain what overdiagnosis means.

Definition: when a disease is detected that would not cause any harm during the lifetime of the patient.

Without better public understanding, difficult for them to make informed decisions about their health.

Ghanouni et al. A survey of public definitions of the term ‘overdiagnosis’ in the United Kingdom. BMJ Open 7 April 2016.