Kathleen Gillett from programme partner Dorset Macmillan Advocacy writes in the second of two posts about how our peer advocates can support older people affected by cancer achieve voice, choice and control in their cancer journey:
Whilst getting to grips with the notions of ‘health literacy’ and ‘patient activation’ that I read about in a report by Macmillan Cancer Support I went on to think about how health literacy and patient activation might interact and found it easiest to use a graph.
So, person A has a high level of health literacy but a weak level of patient activation. They know and understand a lot but lack motivation to move forward. Person B has very strong patient activation but is hampered in decision making by lack of knowledge and poor understanding. Person C has a balance represented by their position on the dotted line. Their level of health literacy and patient activation are sufficient to allow them to move forward without one impeding the other.
What can independent advocacy support potentially do for persons A, B and C? Provide emotional support to build confidence and source practical help to reduce barriers thus enabling person A to strengthen their patient activation (and move closer to the dotted line). Source information in an appropriate format and create opportunities for discussion to check understanding with person B thus increasing their health literacy. Help person C to maintain their balance and grow in both knowledge and confidence throughout their journey (travelling up the dotted line).
There’s no right place to be on this graph, just as there’s no single right way to handle a cancer diagnosis. In reality persons A, B and C will have their own views on what help they need and the role of advocacy is to empower them to express those views. They can be supported to move in a particular direction only if they have expressed the wish to do so.
What of people with both low health literacy and weak patient activation? Older people may be more likely to be in this situation with the risk of low general literacy from limited educational opportunities, having to contend with multiple long term conditions that sap time and energy and having only patchy social support networks. Tailored empathetic peer advocacy support that comes to them at home and stays with them for as long as needed can nevertheless help them to achieve voice, choice and control on their cancer journey.
Kathleen Gillett, Dorset Macmillan Advocacy