An increasing number of people living with HIV are living longer and experiencing a dual diagnosis of HIV and cancer. Little is known of their experience and quality of care. Here we present the findings of a study exploring patient experiences of cancer care, with a focus on the impact of HIV related stigma in the cancer clinical setting.
An interpretive approach, utilising qualitative research methods was adopted to explore the complexity of experiences. Thematic analysis of participant narratives provided in longitudinal, semi-structured interviews with 17 people, recruited from three London sites between 2015 and 2017. Focused ethnography comprising 27 hours of participant observation and seven semi-structured interviews with healthcare professionals.
Both HIV and cancer have a powerful, combined impact on individuals with a dual diagnosis; in cancer the impact is visible; in HIV it is generally hidden. Patients reported feeling a sense of difference within cancer services. The combination of marginalising features such as age, ethnicity and sexuality with reported experiences such as exclusion from clinical trials, extra infection control precautions and tensions about the involvement of the GP led to a powerful felt stigma. Inadequate knowledge about HIV amongst healthcare staff who were unfamiliar with the latest changes in the HIV field led to patients feeling isolated and dependent on their own resources to navigate care. The management of information relating to HIV status was experienced as an additional emotional burden on top of a physically debilitating and disruptive cancer diagnosis. Issues around disclosure were often framed by healthcare professionals as inconvenient and potentially unsafe, but they did not always demonstrate empathy for the potentially devastating implications for those patients for whom secrecy was integral to continued social support.
Dual diagnosis of cancer and HIV can have a profound and negative effect on patients’ experiences and potentially outcomes. Improvement depends on interventions that acknowledge the shared social narrative and impact of HIV-related stigma so that this burden is not carried by the patient alone.
UCL.
Has not received any funding.
All authors have declared no conflicts of interest.