BHIVA Standards of Care for People Living with HIV

2. Person-centred care

Person-centred care means that services consciously adopt the perspectives of individuals, families and communities to respond to their needs and preferences in humane and holistic ways; the person is a participant, not just a beneficiary of the health system.

Good-quality care should focus on the person and not only their illness. These Standards aim to ensure that care for people living with HIV is ‘person-centred’. Person-centred care sees the person as an individual and considers their desires, values, family situations, social circumstances, and lifestyles. In so doing, needs and preferences can be responded to in humane and holistic ways, and people seeking care are seen as participants not just beneficiaries of the health system.

Standard 2 - Person-centred care

When people living with HIV are with healthcare professionals, it is important they are asked about their problems, symptoms and concerns. Despite ART, psychological and social problems persist, as does the experience of stigma. People living with HIV in the UK report a high burden of pain, other symptoms and psychological concerns, which are all associated with poorer adherence, suicidal ideation, poorer quality of life and treatment switching. People attending HIV care services in the UK have identified the need for health professionals to better identify and manage their physical and psychological concerns in order to achieve their life goals.

References: 27–38

2c. Participation of people living with HIV in their care

People living with HIV should be actively involved in decisions about their own health and social care. People who use HIV clinical and support services should be actively involved in the design, planning, delivery and review of these services. Ensuring active engagement in decision-making may require support and resources for both people living with HIV and service providers.

Service providers should be able to demonstrate their commitment to participation through identification of strategies, pathways and resources for both individual engagement in decision-making and community engagement in service provision.

Decisions about individual treatment and care

In line with provision of any care delivered by the NHS, people living with HIV should be as actively involved in decisions relating to their own care and treatment as they wish.

General Medical Council guidance sets out principles for good decision-making practice that apply to all decisions about care. Other professional regulatory bodies and national NHS guidance set out similar requirements. In summary, these state that people receiving care and health practitioners should work together to make informed decisions about treatment and care. People living with HIV can expect:

To be listened to and have their views about their health
To be actively engaged in discussions about their diagnosis, prognosis, treatment and care
To have access to information they want or need, in a way they can understand in appropriate formats, in order to make decisions
To be provided with opportunities and supported to make decisions for themselves
To have their decisions respected, including the right to stop or refuse treatment
To be provided with the resources and support to build their confidence and skills in joint decision-making

Trust and good communication between the person receiving care and the healthcare practitioner lead to better adherence and outcomes. A range of information resources and support services is available to help. Information can include printed, online information, telephone advice lines, with support services including treatment advocates and one-toone and group peer support. These all complement clinical services and are helpful in addressing the following factors that may have an impact on achieving good outcomes:

Physical and psychological readiness for treatment
Understanding how ART works, its efficacy and how this is measured
Concerns about taking ART or using specific ARV drugs, including potential or actual adverse effects
Concerns with possible adverse social consequences of actions such as talking to others about HIV
Confidence in the ability to adhere to ART and the importance of adherence
Psychological or cognitive issues that could have an impact on adherence (e.g. depression, memory problems, drug or alcohol use)
Issues related to living long term with HIV and ageing with HIV and the impact these might have on treatment and health management
Understanding of other treatments and medications, particularly in how these may interact with HIV and ART
Socio-economic, cultural or practical factors that could have an impact on adherence, (e.g. income, housing, faith, intimate partner violence, abuse, stigma and acceptance of their condition)
Confidence in talking to medical staff about HIV and other health issues
Accessing primary care services, particularly GPs, to manage other health concerns
Managing care plans across multiple long-term conditions and multiple treatment regimes
Engaging with palliative care services and actively participating in decisions about palliative care.

Involving people living with HIV in their healthcare supports long-term, chronic condition self-management (see Standard 2b ). The experiences of people receiving healthcare are important measures of service quality.

Not all populations of people living with HIV have the same personal or structural capacity to engage effectively in shared decision-making about their care. Specifically people who use drugs, those with liminal migration status and those facing communication challenges may be less able to engage in these processes. Particular attention needs to be paid to the structural disadvantage that this may entail.

Planning services

Participation of people living with HIV in service design, planning delivery and review allows providers to both understand and meet the needs of the communities served.

As an activist, contributor and beneficiary of these standards it has been greatly encouraging to see BHIVA walk their talk by meaningfully engaging community members at every stage in the development and production of this resource. Alastair Hudson, The People Living with HIV Stigma Index UK/FPA

People living with HIV have consistently advocated for participation in decision-making about services they use and for people living with HIV to be treated with dignity and respect, to which the design, delivery and performance of clinical services contribute. The right to be consulted on healthcare is enshrined in law and clarified in NHS guidance. Attention needs to be paid to the diversity of experience among people living with HIV to ensure that this is reflected in practice.

Services need to build in adequate time for patient consultation and include training and capacity building that allows patients to understand their services, their place within NHS structures and the role of patients and communities in contributing to service planning. While HIV treatment and care are provided within the NHS, depending on where you live, sexual and reproductive health services and community support services may reside within local authorities and patients need to understand who is responsible for different aspects of their care in order to engage effectively. The community and voluntary sector can be engaged to support this.

Ultimately, management of HIV is likely to require greater involvement from primary care/GP services as is the case with other long-term conditions such as diabetes, chronic lung disease, and heart failure.

Practitioners and managers will need to acquire, and be supported to acquire, the skills and resources needed for fruitful engagement and consultation.

Decisions about individual treatment and care

In line with provision of any care delivered by the NHS, people living with HIV should be as actively involved in decisions relating to their own care and treatment as they wish.

Services should place the patient at the centre of decision-making and ensure that assessment and delivery of care addresses both clinical and patient-reported outcomes and priorities.
Services should ensure that decisions made together by people living with HIV and practitioners follow national guidance and professional standards for shared decision-making in all aspects of care.
Services should ensure that people living with HIV have access to written information about investigations, ART and other aspects of their HIV treatment and care, or are able to provide the equivalent orally if this is preferred or necessary. At a minimum, services should ensure access to written information about:
- The purposes and methods of monitoring CD4 count and viral load, the frequency, and what these tests mean
- How ART works, including the importance of adherence and the risks and benefits of treatment
- The choices for ART, including potential side effects from individual drugs and how these will be managed if they occur
- Information about the importance of drug interactions, particularly in relation to comorbidities and other long-term conditions
- Information about improving general health outcomes
People living with HIV should expect information to be available in a language that is understandable and in a format relevant to individual needs, including age and literacy level.
Developing capability for shared decision-making should be encouraged and facilitated in clinicians, people living with HIV and the community sector, in particular for those whose background circumstances may compromise their full participation in evaluating options for treatment and care.
Developing capability for shared decision-making should recognise the structural disadvantages experienced by some groups of people living with HIV (e.g. people who use drugs, those with uncertain migration status or those with communication challenges). Developing tools to address this disadvantage should be a priority for services providers.

Planning services

To ensure that services are fit for purpose and responsive to users’ needs, opportunities (formal and informal) should be available for people living with HIV, individually or through the community sector, to be involved in service design, planning, delivery and review. Opportunities for service-user involvement should be multiple, varied and widely publicised.
People living with HIV should expect to be able to provide feedback, ranging from comment on individual consultations to involvement in service commissioning, as well as the chance to give named and anonymous input into service design, delivery and performance review at local, regional and national level. Their involvement should remain incorporated in national guidelines.
Information related to consultations about service planning and delivery should be published in appropriate physical (e.g. public notice boards) and virtual (e.g. service provider’s web site) locations.
Formal structures for service design and review should always factor in adequate time for meaningful service-user input and include community representatives who should, as far as is practical, reflect the diversity of the population served. There should be transparent mechanisms for selection of community representatives and for the wider involvement of people living with HIV in these structures.
Practitioners and managers within HIV services should be supported to acquire the skills and resources needed for genuine and meaningful engagement and consultation with service users. There should be due recognition that people living with HIV are also part of the clinical, social care and service workforce.

Click here to view this page in the 'Your Guide to...BHIVA Standards of Care for People Living with HIV' section