Qualitative situational analysis of palliative care for adolescents with cancer and HIV in South Africa: healthcare worker perceptions

OBJECTIVES: The unmet palliative care need is intensified in resource-limited countries where there is inequitable access to healthcare and adolescents and young adults (AYA) fall between the cracks of paediatric and adult services. We aimed to examine palliative care for AYA with cancer and/or HIV in South Africa. DESIGN: Individual and small group interviews using process mapping. SETTING: Data were collected between November 2016 and March 2017 with staff from government hospitals, hospices and clinics from three provinces of South Africa. PARTICIPANTS: Health and social care professionals (n=30) (eg, physicians, nurses, social workers, psychologists) from KwaZulu-Natal, Western Cape and Gauteng provinces. METHODS: In this qualitative situational analysis study, participants were recruited to interviews and process mapping used to try and identify palliative care pathways of AYA with palliative care needs. We developed a thematic framework using a deductive approach to analyse the interview data. RESULTS: Palliative care pathways were not easily identifiable, ambiguous and varied and participants reported on their experiences and perceptions of service provision. Participants expressed that resource challenges limited the service provision. A need for nurse prescribing of pain relief at community level was mentioned as AYA are reluctant to use hospitals and clinics. Lack of (1) palliative care education among professionals, (2) public awareness and (3) adolescent-specific care posed a challenge to service provision. CONCLUSIONS: The changing burden of HIV and increase in cancer prevalence calls for integration of palliative care in mainstream health services. Despite good policies, the pragmatic aspect of training professionals will influence a change in practice. The main task will be to absorb palliative care philosophy and practice at all levels of care to avoid overburdening the care system and to integrate it in community care programmes.