In recent years, there has been growing recognition of the importance of listening to service users and people with lived experience, in both the fields of HIV/AIDS and mental health, so as to design and deliver more effective systems of care.
But of course, good intentions aren’t everything.
Drawing on the expertise of people with lived experience - or “experts by experience” - needs to be done in ways that ensure their voices and perspectives are truly valued, meaningfully acted upon, and their well-being safeguarded.
Otherwise, it can risk being done in ways that are
either tokenistic or triggering for those experts by
experience.
In this edition of Zumbido Pulse we share insights from 15 years of running psychosocial support groups for young people
living with HIV and our approach to involving
people with lived experience in the design,
implementation and adaptation of those
programmes.
