Communication and coordination of care for people living with HIV: a qualitative study of the patient perspective

Abstract Background There is growing consensus that primary health care (PHC) providers have an important role in providing holistic, preventative care for people living with human immunodeficiency virus (PLHIV). In regional Australia, HIV care is primarily delivered through specialist services, thus adequate coordination and communication between specialist and PHC professionals is crucial. This study aimed to explore patient experiences of the coordination of care and health care professional communication for PLHIV in regional Australia. Methods Semi-structured interviews with PLHIV in a regional area of Australia were conducted in March to April 2022. Interviews were conducted via video conferencing, face-to-face, or via telephone call. Interviews were audio-recorded and manually transcribed. Transcripts were coded inductively and thematic analysis was conducted to explore perspectives on communication and coordination. Results Thirteen participants were interviewed. Most participants were male, aged 50–70, were diagnosed with HIV more than ten years ago, and had been living in regional Australia long-term. Through qualitative analysis, themes emerged in the following areas: (1) Patient perception of care coordination; (2) Patient understanding of modality of communication; (3) Positive attitudes towards communication between healthcare professionals; and (4) Concerns for information sharing between healthcare professionals. Many participants highlighted lack of clarity around care coordination as a key issue in their healthcare, with some citing themselves as the primary care coordinator. Participants identified that coordination and communication between PHC professionals and specialist services are essential in the delivery of their health care, but some were hesitant for this to occur. Hesitancy was entrenched in some patients’ distrust of healthcare due to previous experiences of confidentiality breaches and stigma. Conclusion This study identifies the need for clarity in coordination between health care professionals to deliver safe and effective HIV care, which may occur through care plans. Patient support for communication between healthcare providers may be strengthened by ensuring trust in the people and systems involved. Eliminating stigma in healthcare as well as building more trustworthy electronic-based communication technologies are essential components to trust-building between PLHIV and healthcare systems.