The medical, behavioural, and psychosocial journey in response to HIV has been extraordinary over the past four decades and character ised by interdisciplinary working,
The concept of interdisciplinary working, captured in the HIV-focused work of Jonathan Mann (Mann and Tarantola, 1998), points to how medical, behavioural and social responses define and conceptualise salient healthcare issues, determining what we believe can be done and, more importantly, what is actually done.
In the early years of the HIV pandemic, there were no effective medical treatments so the diagnosis carried a high degree of mortality. As a result, medical and public health responses were forced to change, collaborating and adapting to align with broader human rights issues, considering structural determinants of health and incorporating the impact of marginalisation, stigma and poverty into the design of effective responses and treatment delivery.
These responses provided early frameworks for closer multidisciplinary and interdisciplinary interventions that have come to characterise care provision for people living with HIV in the UK and internationally.
In 2014, UNAIDS declared a global ambition to end HIV transmissions by 2030 and set specific HIV care targets (UNAIDS, 2014). The 90-90-90 initiative, which is very familiar to those who work in the field of HIV, created targets of 90% of people living with HIV being diagnosed, 90% of those people being on antiretroviral treatment and that 90% of those on treatment having viral loads that were undetectable.
This article explores the development of interdisciplinary approaches to HIV care, with the main focus on NHS HIV clinics. Examples of practical interdisciplinary approaches are provided to suggest that working in an interdisciplinary way best serves the complex and inter-relating needs of the HIV population (British Psychological Society (BPS) et al, 2011; BHIVA, 2018; Warner and Rutter, 2020).
How HIV brought focus to psychosocial issues
Unusually for the profession of applied psychology, psychologists and psychological theory and knowledge were centrally involved from the outset in defining problems and shaping responses to HIV.
Psychologists were at the forefront of shifting the emphasis from individual sexual behaviour change (eg decreasing sexual partners and consistent condom use) to a greater understanding of underlying factors that conferred vulnerability to HIV acquisition. These factors included marginalisation and powerlessness because of stigmatised group membership (such as gay/bisexual men, intravenous drug users and sex workers), the contribution of previous traumatic experiences on behaviour and the inadequacy of traditional public health models (Kelly et al, 1993; DiClemente and Peterson, 1994; Beeker et al, 1998).
HIV nursing had to quickly establish adaptive and novel responses to working in rural and urban settings with varied prevalence, evolving in response to patient need and service provision. In high-prevalence areas, the size and complexity of caseloads provided opportunities for nurses to become highly skilled in specific aspects of care. In contrast, areas of low prevalence were unlikely to support a multidisciplinary specialist workforce and nursing roles expanded accordingly to deliver services traditionally provided by social workers and psychologists in other contexts (Tunnicliff et al, 2013)
Increased acknowledgement of the limits of individual professional roles happened for several reasons. First, many clinicians and researchers responding to the challenge of HIV/AIDS came from the communities most affected. Gay men, community activists and people from minority ethnic groups therefore had a dual role regarding forging the responses to HIV prevention both as members of at-risk communities and as professionals with service delivery responsibilities (Slevin et al, 2008; Kleppe and Caldwell, 2011; Rabkin et al, 2018). This led to greater understanding of the personal impact and lived experience of HIV. This, in turn, promoted service user involvement in service design and delivery.
Second, for many years HIV/AIDS was a life-limiting illness for which there was no effective medical treatment. Therefore, the focus became the person living with the condition and their quality of life, not the symptoms. Nurses, psychologists, counsellors and other professionals developed collaborative relationships within healthcare and linked with the HIV peer support community.
When new medications were developed, activists fought hard to access timely treatments (Smith and Whiteside, 2010; Killen et al, 2012), which profoundly influenced how clinical trials were conducted. Regulatory agencies and pharmaceutical companies were actively challenged to respond urgently (Koen et al, 2013).
Lastly, developments in treatment over the past 25 years have changed health prognoses from mostly terminal and palliative to long-term and manageable. HIV is now, in developed countries at least, seen as a health condition with good medical outcomes.
However, the stigma attached to HIV remains, which has a negative impact on mental health, effective coping and long-term medication adherence (Rueda et al, 2016).
Interdisciplinary versus multidisciplinary: the subtle difference
Despite considerable advancements in HIV medical treatment, morbidity and mortality remain of concern (BHIVA, 2018). They are often linked to complex psychosocial issues as well as systemic factors affecting prompt diagnosis and medication adherence (Nightingale et al, 2011; Pence et al, 2012; Beima-Sofie et al, 2020).
Increasing recognition of the complex interplay between physical and mental health needs resulted in closer multidisciplinary working, highlighting the overlap in many healthcare worker roles (Ndoro, 2014).
The benefits of multidisciplinary working relate to each profession bringing its strengths. For example, doctors bring biomedical expertise and, in the ongoing management of HIV, nursing has become central to the delivery of person-centred care (Vance, et al, 2008; Bolton and Gillett, 2019). Psychologists have expertise in formulation and intervention, particularly for complex clinical presentations and trauma-related issues (Garzonis et al, 2015; Pudalov et al, 2018). Multidisciplinary care advocates that professionals each work from an individual position of expertise, albeit alongside each other. However, service users can experience this as people looking after different parts of them rather than integrated and co-ordinated care.
There is, therefore, a call for the integration of knowledge, joint working and a shared response to issues, working alongside people living with HIV to understand and meet inter-relating needs (BPS et al, 2011; BHIVA, 2018; Warner and Rutter, 2020). Interdisciplinary working differs slightly in its ethos, being defined more as integrating and synthesising approaches to care delivery (Giusti et al, 2017). It can be achieved within teams or indeed between teams/services as there can be overlaps across many issues (eg tuberculosis, hepatitis C, pregnancy, sexual health issues and child-to-adult transition) (BHIVA, 2018).
Development of interdisciplinary care: a UK example
Given the complex needs of many people living with HIV because of issues such as stigma, previous trauma and marginalisation, there can be considerable overlap between clinicians in terms of the focus on wellbeing (Watkins-Hayes, 2014; Croston and Rutter, 2020). Progress in treatment has reduced distress relating to symptoms and side-effects, which means that clinician focus, perhaps particularly for specialist nurses, has remained person centred and less focused on the medical model.
This is likely to be because of growing awareness of associations between psychological distress and adherence (Leserman, 2008; Smart, 2009), with consistent adherence being central to treatment effectiveness. Therefore, there is a natural leaning toward working together, which may originate in the clinic but can extend beyond this as networks develop.
This is what happened in the experience of the authors. Relationships that were established on the ground between psychology and nursing grew and then developed into broader connections across services and professional groups and bodies.
On reflection, the authors can pinpoint the birth of this shift for them to the connections made during the National HIV Nurses Association's (NHIVNA) (2015) first audit. MC, who was NHIVNA chair at the time, had opted to audit the Standards for Psychological Support for Adults Living with HIV (BPS et al, 2011). A natural link was made with BPS HIV and sexual health committee members (TC and SR) as the NHIVNA chair and a BPS member were working in the same service. This formed the basis of the NHIVNA and BPS collaboration that continues today.
The standards acknowledge the varied mental health needs among a diverse HIV population and advocate a stepped model of psychologically informed care to be delivered by all HIV clinicians. In stepped-care models, the complexity of patient need is matched by increased specialist skills and expertise on the part of the health professional. However, as non-mental health HIV practitioners will have contact with service users who have all levels of psychological issues, including those that are highly complex, professionals with specialist mental health qualifications should provide support to the whole team though activities such as consultation, supervision, facilitation of reflective practice, teaching, and training (Figure 1).
This was therefore considered an area of great importance, and, after the NHIVNA chair initiated the audit proposal, clinical psychologists were invited to get on board. A working group was formed consisting of representatives from nursing, the HIV community, psychology, academics and directors/executives from national bodies. An audit pro forma was co-produced by all, and nursing psychology shared the responsibility for the write-up.
Audit results and recommendations
In brief, the findings of the audit indicated that, where psychological distress was identified, the stepped-care model was generally implemented. However, there was a lack of consistent psychological and cognitive screening as well as inconsistent mental health history-taking and risk documentation.
The audit showed many HIV services lacked policies around mental health, risk and adherence, and there was also limited teaching/training regarding psychological issues, reflecting that many HIV services lacked access to in-house mental health professionals.
On discussing the audit results and obstacles to the comprehensive delivery of psychologically informed care in HIV services, the working group drew up a range of recommendations. These included a suggestion to develop a training package to support care professionals working at non-specialist levels of the stepped-care model.
Recommendations were made for the development of clearer pathways for psychological assessment, consistent documentation of mental health needs and risk and standardisation of psychological and cognitive screening assessment tools. An annual nursing review of care and the development of local mental health policies, risk and adherence were also suggested. It was from this ‘to-do’ list that the interdisciplinary relationships began to grow and cement.
Robust relationships: rich work output
On the back of the audit results, enhancing skills in the delivery of psychologically informed care was considered a priority. The nursing audit lead formed another working group, again consisting of nurses, psychologists, community experts and national body chairs.
The group worked together to co-create a training programme, developed from a range of perspectives, considering the broad and varying needs of the HIV population, as well as the learning needs of those delivering healthcare. The teaching resource was designed to be co-delivered by nursing and psychology.
Pilots of the training received positive feedback and it is hoped that the project can be rolled out nationally over time.
The publication of the audit results, alongside other contemporary guidance focusing on treatment after diagnosis (eg BHIVA's (2016) monitoring guidelines) led to conversations around how to ensure salient assessments were carried out in accordance with existing guidance (BPS et al, 2011; BHIVA, 2016). Ideas were formulated around creating an annual health review model for people receiving HIV care. This could address the lack of focus on mental health and cognitive screening in clinics by including this in a review protocol. This afforded another opportunity for collaboration between medicine, nursing and psychology.
As the concurrent chairs of NHIVNA and the BPS faculty for HIV and sexual health now had a solid working relationship, clinical psychology input was welcomed into the annual health review project. This not only embedded the presence of psychological screening into a practical guide for HIV care but also allowed psychological influence of broader areas addressed by the review, such as sexual health and function.
As the project was primarily nurse led, psychologists were able to learn about the breadth of the specialist nurse role and share ideas about how to realistically incorporate assessments and conversations about psychological issues, particularly when in-house mental health provision was unavailable. Once again, the worlds of health and mental health were sharing ideas and working together to ensure a holistic approach to healthcare and wellbeing. The annual review standard was published in 2018 (NHIVNA, 2018) with the hope it would begin to guide practice in HIV services across the UK.
As professional bonds between clinicians deepened through interdisciplinary projects, working together became the norm. Joint study days were organised, and a clinical psychology presence was regularly requested for HIV nursing conferences, through presentations or participation in expert panels. The invitations were reciprocated when the BPS HIV and sexual health faculty organised educational events, with a view to accessing specialist knowledge regarding complexities of the nursing role in ongoing HIV care provision. As a result, further networking occurred and more relationships were forged, with each person becoming increasingly familiar with the expertise and priorities of the other. Although the roots of the relationships were between nursing and psychology, there was also outreach to psychology from medicine when it came to updating the BHIVA standards of care (2018).
The sharing and combining of knowledge culminated in the plan to write a book focusing on psychological issues within HIV care (Croston and Rutter, 2020). Again, this idea was driven by a well-developed professional relationship, and used firmly established networks to draw together knowledge from a range of professionals. The endeavour spanned several years; however, it finally came to fruition and was published with the intent of being a guide for non-mental health professionals working in or interested in HIV care. It was hoped that by putting an emphasis on HIV-related psychological issues, individual clinicians and teams would bring this to their work and advocate for the holistic approach that is so needed within the field.
Reflections on the feedback loop
Specialist physical health services for long-term conditions create an ideal opportunity for cross-connections between medical, nursing and mental health colleagues. However, busy work schedules and service pressures can sometimes mean individuals focus on service user needs independently and contact each other only when necessary.
Although multidisciplinary working remains fit for many purposes, the authors' experience of actively working alongside colleagues from other professions on broader issues of care has proved enriching. It is perhaps fair to reflect that psychologists have benefited from the pragmatic realism of nursing colleagues in particular, and their ability to move projects forward in a manner that makes a genuine difference to clinical care. This way of working has also highlighted the complexity of care that nurses deliver in HIV services, and collaboration across disciplines has created a framework for sharing knowledge and providing mutual support.
Of course, although interprofessional connections are the focus here, engagement with experts by experience must not be overlooked. Historically, this collaboration is common in HIV projects (although it still requires improvement) regarding service design, development, and monitoring.
Just as working alongside people living with HIV helps care professionals understand what is required in terms of healthcare provision, different professionals linking up in a meaningful way helps everyone understand what is required from each other. Recognising strengths and limitations not only identifies where mutual support is useful but also can help shift professional blind spots and help people think outside their usual frameworks.
Without the relationships and connections, clinical work is more likely to happen in silos and be less holistic as a result. By truly working together, professionals can develop tools to support the delivery of optimum HIV care, guided by standards and clinical frameworks already steeped in broader interdisciplinary thinking.
It follows then, that these frameworks are primed to be delivered in a more integrated fashion, rather than being adapted at the point of care delivery. Could it then be posited that clinical guidance encouraging interdisciplinary working fosters professional relationships on the shop floor? Cohesive teams are likely to deliver high-quality care, and positive evaluation of this work may cement clinical relationships, perhaps leading to further clinical and strategic collaboration.
However, having different professions working alongside each other may not be without its challenges because of a range of factors including (although not exclusive to) conflicting priorities, opposing perspectives and imbalances in power distribution. Additionally, team dynamics can be complex and the development of connections may well come with ruptures. Nevertheless, if managed effectively, relationship ruptures can be a great source of learning as they can inform people of the positions of others and the rationales behind those positions. With open communication, perhaps supported by reflective practice, the repairing of ruptures may even facilitate team cohesion.
Conclusion
The UNAIDS (2014) 90-90-90 targets have been achieved across many Western countries. However, this requires support structures to maintain medication adherence, mood and quality of life, as well as psychological coping mechanisms to counter experiences of HIV stigma.
HIV stigma can negatively affect happiness, mental health, self-esteem, and sexual and social relationships among those living with HIV and can, arguably, be considered the most important inadequately and inconsistently addressed issue affecting quality of life in this population. The challenge for all clinicians will be to initiate and support anti-stigma initiatives, facilitate the development of patient skills to counter HIV stigma and effectively support those who are not yet ready to manage independently.
The involvement of service users is crucial to the development of strategies to achieve these goals. However, service user participation is not yet completely embedded in the design and delivery of clinical services, and this remains a barrier to full collaboration.
Continued focus on health-related quality of life for people living with HIV, proposed as the fourth 90 (Lazarus et al, 2016), means we are challenged to move beyond clinical solutions and the sole focus on viral suppression. This is best addressed from a shared perspective.
Reflecting on the authors' own experiences shows there is great value in forming robust professional relationships, and we hope to continue to strive together to address the needs of the HIV population. Our experience has taught us that not all ideas ‘have legs’ but the process of collaboration in itself underpins meaningful progress.
Looking forward, there are projects on the agenda and our reach is extending internationally, thanks to European HIV nursing conferences and nursing links with the European Society for Person Centered Healthcare.
After working in an interdisciplinary manner for many years now, the authors strongly believe they can improve healthcare for people living with HIV far more through working together than they ever could from strictly within their own disciplines. When aiming to deliver the highest standard of care possible, they are convinced that this will best be achieved collectively.
KEY POINTS
- From its beginnings, the psychosocial complexity of HIV care has required a sensitive, holistic approach, facilitating closer multidisciplinary and interdisciplinary working
- Interdisciplinary working is essential in HIV care, as complex psychosocial difficulties inter-relate with medical issues and health outcomes
- Joint working and collaboration across disciplines promotes the sharing of knowledge and can create strong professional relationships on which further collaboration can be built
- Different professionals working together as well as collaboration with service users can result in a truly comprehensive approach to HIV care, including the development of the care standards, policies and overarching strategies relevant to people living with HIV
CPD reflective questions
- In what ways might different disciplines work more closely together in direct clinical care?
- How might collaborative working enrich patient care in everyday practice?
- What might be some of the benefits of a joint approach to influence care standards and policy relating to HIV care?
- How might outcomes in HIV care be improved though effective interdisciplinary working?