Hi everyone
Great to be part of this interesting discussion
This (lack of utilisation of persons with lived experience) has been a blind spot in a a lot of literature or guidelines on cancer prevention and screening. The role of lived experience definitely needs to be highlighted or emphasised in future editions.
As Diya Sur said, cancer, especially gynae cancers are still seen as a death sentence (outcomes are still poor in Low and Middle Income Countries). It is further complicated by social and cultural norms where talking about reproductive organs is still taboo. Women are discouraged from even mentioning these organs or describing their symptoms.
A person with lived experience of cancer brings hope and changes the perception of cancer being a death sentence. When she talks of the linkage between early diagnosis and better outcomes, it resonates.
In many instances where persons with lived experience play a role as patient navigator after a screening or a diagnosis, they are often able to convince the woman and their family to go ahead with treatment.
If treatment requires them to leave their family and travel to a tertiary care centre, counselling will need to extend to the husband and his family as well.
One other aspect we must be able to address is the impact of cervical cancer on their reproductive health, especially in younger women. Loss of ability to bear children has social consequences which seem worse than death
Aparna Mittal
Founder and CEO
PatientsEngage
www.patientsengage.com
HIFA profile: Aparna Mittal is a Patient Advocate and Founder/ CEO, PatientsEngage Health Foundation, India and Singapore. Professional interests: Building Health Literacy and an Informed Community, Advocating for persons with lived experience to be part of shared decision making as well as policy making. Email address: aparna.mittal AT patientsengage.com