Determinants of access to general practice in a shared care model for people living with HIV: a qualitive study of patients’ perspectives in an Australian rural community

Pharmacological advancements in treating human immunodeficiency virus (HIV) have significantly reduced mortality rates in people living with HIV (PLWH) [1]. The current population of PLWH is larger and older than in the past [2] with a disproportionately high comorbidity burden compared to age-matched peers [3]. As approaches to HIV management have evolved to become increasingly long term, a greater role for primary care is emerging in PLWH to include screening, prevention, and management of non-HIV-related and HIV-related comorbidities. Unfortunately, PLWH experience more barriers to accessing primary care resulting in lower rates of cancer screening and increased hospital admissions when not engaged with regular primary care [4, 5]. Improving access to primary care for PLWH may improve health outcomes and quality of life [6‐8].

The evolving roles and responsibilities of the healthcare system in supporting long-term care of PLWH have been outlined in a consensus statement released by Lazarus et al. [9]. Addressing barriers of access to care was identified as a key concern in future healthcare planning, including the improved implementation of models of care that connect PLWH with primary care [9]. In accordance with this recommendation, the New South Wales (NSW) Health HIV strategy 2021–2025 proposed a state-wide shared care model to optimise the link between community and specialist healthcare [10]. Shared care is a team-based model of care involving a coordinated and communicative arrangement between General Practitioners (GPs), specialists and other members of one’s healthcare team [10] which has been widely propounded internationally [5, 9, 11‐13].

In rural Australia, HIV care is predominantly accessed through publicly funded multi-disciplinary sexual health clinics [14], similar to speciality-based care models conducted internationally [5, 15]. These clinics are separate from GPs who are the predominant providers of primary care in Australia. GP consultations are either fully funded (bulk billed) or partially subsidised by the government at the discretion of the GP and the practice. PLWH in rural settings have varied engagement with GPs and have historically accessed general medical care at sexual health clinics more than those in inner urban areas [14]. Multiple barriers to GP and general healthcare engagement have been identified for PLWH, including anticipated stigma [12, 16, 17], confidentiality risks [5, 12, 18], appointment unavailability [13, 18], cost [16, 17, 19] and lack of HIV-knowledge based care [5, 12, 14, 16]. Financial stressors, transport challenges [2] and heightened confidentiality concerns [16] are particular challenges to rural Australian populations. As interventions are more successful when barriers and enablers to their utilisation are identified and addressed [20], analysis of the barriers to shared care in a previously specialist-led, rural context is necessary for effective healthcare provision.

The access framework conceptualised by Levesque et al. [21] describes five determinants of access related to both the service seeker and service provider (Fig. 1). The use of this framework has been substantiated as a tool to comprehensively analyse influencers to accessing healthcare [22]. Numerous studies have used this framework in the context of primary health care access specifically [23], particularly for vulnerable populations [24‐26]. The framework organises the stages of access from perceiving a service to consumer engagement and represents the role of both the individual and population, as well as the providers, services, and health systems, in one’s ability to access care. To date, a holistic, qualitative analysis of the factors influencing access to a shared care model of healthcare has not been conducted in Australia or internationally for PLWH. By utilising the Levesque framework, this study aims to elucidate the key barriers and enablers to accessing shared care identified by PLWH in a rural setting.

Thirteen interviews were completed with most participants male and over 50 years old (Table 2). No participants identified as Aboriginal or Torres Strait Islander. Most participants had long term HIV diagnoses and had been residing in Northern NSW for over 10 years. All participants had at least one comorbidity with the majority experiencing between 1 and 3 comorbid conditions. No participants requested amendments to their transcripts.

Findings are presented in accordance with the dimensions of access proposed by Levesque et al. [21]. Illustrative quotes are provided in Table 3.

This study utilised a framework [21] to identify the determinants of access to shared care for PLWH in Northern NSW. The key factors affecting access were the perception of shared care providing additive value, the effect of past stigma on current healthcare engagement, and the compromise between quality care and logistical challenges. Overall, PLWH were satisfied with HIV specialist-led care but demonstrated mixed perspectives around increasing engagement with GPs.

Proactive access of care requires patients to perceive a benefit in accessing that service [37]. Overall, participants did not acknowledge or prioritise the potential positive health outcomes of shared care, and the role of GP care in this. Participants with long term specialist HIV care valued the social and interpersonal aspects of longer appointments and establishing trusting relationships with a specialist, which is also reflected in the literature [38]. GP consultations were generally viewed as lacking this valued interpersonal quality which led to shared care being perceived as lower value by some participants. This aligns with GPs’ perspectives that PLWH with prior long term specialist treatment appear to expect specialist-level care in GP environments [5], which is logistically unattainable in the GP setting. Participants with stable health and low comorbidity burden also perceived low need for shared care. While shared care is less indicated in this population, anticipating need may allow for the development of relationships prior to future health care crises and prevent the development of comorbid conditions.

Past experiences of stigma in healthcare have been found to cause subsequent healthcare avoidance or apprehension [2, 12, 16, 17, 19, 39, 40]. Participants perceived sexual health clinics as safe from stigma but GPs as relatively high risk. Trust and continuity of care were the most important facilitators of access in this context, particularly enabled by empathic and personalised consultation styles as well as flexible consultation lengths. In future shared care implementation, maximising continuity of care may be important in addressing this well established and widespread issue. Managing strict time constraints may be a future focus, having also been found to affect GP access for PLWH in other studies [18, 41]. In this study, participants felt less heard, less cared for and less likely to continue care when rushed in consultations. GPs have identified that longer consultation times facilitate healthcare in patients with anticipated stigma but pose a major challenge for financial feasibility [19]. Unlike the literature, fear of confidentiality breaches in GPs was not a primary barrier in this study as it has been identified elsewhere [5, 11, 12, 18]. This may be due to longer length of time living with HIV being related to reduced concerns regarding confidentiality [18]. Confidentiality may still be a prominent concern for PLWH outside of this sample.

Compromises between logistical considerations and quality GP care influenced access to GP care in this cohort. PLWH in rural NSW are more likely to have financial stressors [2] and travel greater distances for care [14]. Factors such as appointment availability, affordability and transport were important considerations for participants and eventuated in sacrificing care outright or being forced into lower quality care with poorer technical competency or interpersonal skills. Due to the importance placed on continuity of care in those with past stigma, lack of availability of a trusted GP was a deterrent for engaging in shared care and may lead to more anticipated or actualised stigma. In addition to compromised rapport, engaging in multiple GPs reduces effectiveness of shared care by complicating interprofessional communication pathways and coordination [5]. Low appointment availability, bulk billed and otherwise, is exacerbated by workforce limitations in rural NSW. Many participants financially required bulk billing practices; however, these were perceived as being more rushed, having less concern for holistic care and less continuity of care which was particularly disengaging in this patient group. Due to the low density of bulk billing practices and low availabilities, participants were travelling large distances and paying to access quality GP care.

As both technical and interpersonal competency were valued by participants, both must be addressed in increasing PLWH’s perceived need for shared care. Resistance to shared care has been shown to persist despite its advantages being identified [40], therefore patient education on the technical skills of GPs in primary care is insufficient in addressing this issue. The most significant factors to address in effective implementation of shared care are establishing trust and continuity of care for PLWH in general practice. Institutionalised stigma must be challenged in the training of current GPs and future medical practitioners to destigmatise care. A formal process to advertise HIV-friendly practices as an indicator of safe care for PLWH is recommended by this study and in accordance with Lazarus et al. [9]. To utilise the trusted healthcare relationship between PLWH and their HIV specialist, transition to shared care could be more actively managed by the specialist, including referral to reputably stigma-free GPs. This may also strengthen interdisciplinary relationships as smaller interprofessional communication networks have been shown to facilitate stronger coordination of shared care, particularly in low HIV caseload areas [5]. Furthermore, as availability of bulk billing is not ensured in rural Australia and PLWH are a vulnerable population, continuity of care could be assisted by government subsidies assisting non-bulk billing practices to provide GP care for PLWH. This could include financial incentives for extended consultation times which may benefit early rapport building and subsequent continuity. This population may also significantly benefit from the continuity of care outcomes predicted for voluntary patient registration in future GP reform [42].

Utilising the Levesque framework [21] was a strength of this study as it incorporated a holistic range of access determinants with clear definitions. Perspectives of people with long term HIV diagnoses gave insight into current impacts of access in the context of the evolution of HIV care. The generalisability of the data was affected by limited diversity of age and gender as studies have found that older people and men who have sex with men are more likely to have a regular GP than younger people and heterosexual people respectively [12], potentially overestimating GP engagement. This study was also limited by sampling as participants were primarily recruited from sexual health clinics and therefore did not represent some PLWH who solely receive GP care. Future research could focus on the implementation of targeted interventions addressing the challenges identified in this study, with a larger and more diverse sample of rural PLWH, including those receiving care only from GPs.

Access to shared care is likely to be facilitated when GP engagement is perceived as providing additive value, both through health outcomes and rapport. Navigating anticipated stigma was a significant barrier to access and can be addressed by maximising trust and continuity within the logistical limitations of rural healthcare. While some action can be taken on the service level to reduce these barriers, strategies for system-wide changes could allow shared care to be utilised more effectively.