Today is the last day of International Infection Prevention and Control Week. It’s a week which has been centred on its theme which this year is “Moving the Needle on Infection Prevention.” including a focus yesterday (Friday) on the care continuum and long term care settings.
I have thought about infection prevention and control a great deal in the last few years not least because of my conviction that as a health and care community we got it so badly wrong during the Covid pandemic. In workshop and conference sessions and in evidence submissions I have argued that we need to adopt a much more human rights-based approach in the face of any future pandemic or major event.
The following blog is an attempt to start a conversation on what I mean by a more human rights based approach to IPC, because I honestly do not think that the current Antimicrobial Resistance & Healthcare Associated Infection (ARHAI) Scotland guidance for social care settings is acceptable or human rights based and because I am fearful that another future event will again be dominated by a public health approach devoid of a robust human rights focus.
At the very least the tone and language of associated documentation and practice – including the material produced for the IPC Week – has to start to reflect the reality that a care home is someone’s home and its residents are autonomous individuals with human rights and not occupiers of a space and place of clinical practice. I would go even further and suggest that much of existing IPC guidance for hospital settings is devoid of a human rights perspective.
The Covid-19 pandemic has forced us to re-examine many aspects of our society, and nowhere has this introspection been more needed than in the care of older persons both in our community and in our residential care settings. Care homes became, during the pandemic, epicentres of vulnerability. Lives were lost, families were shattered, and the reverberations continue to be felt. Yet, there is now an opportunity for radical transformation – a move towards a human rights-based approach to infection prevention and control (IPC). This approach prioritises the dignity, autonomy, and the well-being of individuals while ensuring safety and care standards that protect the most vulnerable.
It is impossible to discuss the need for change without reflecting on the trauma that Covid-19 brought to care homes. The pandemic introduced extraordinary measures in care homes: strict lockdowns, isolation, and visitation bans, all in the name of infection control. While these interventions were aimed at protecting physical health, they often resulted in deep social, emotional, and psychological harm to residents, families and staff.
Research has shown that, particularly in the early phases, decisions were made rapidly, and often with a singular focus on controlling infection at the expense of residents’ broader human rights. Lockdowns, blanket visiting bans, and restrictive practices – while intended to protect – often resulted in loneliness, isolation, and psychological distress for residents. A Lancet study noted significant increases in depression, anxiety, and a decline in cognitive health during prolonged isolation in care homes (Hanna et al., 2021).
For many, particularly those living with dementia, the loss of daily contact with loved ones, the curtailment of social activities, and even changes in routine caused irreversible deterioration. Studies like those by the Journal of the American Medical Directors Association (2022) indicate a notable decline in cognitive function and mental well-being in residents subjected to prolonged isolation.
This experience starkly highlighted that safety cannot be achieved at the expense of dignity. The desire to prevent infection must be balanced with respect for autonomy and a person’s right to live a life that is meaningful, connected, and dignified.
Post-Covid, we are faced with an urgent question: How can we protect residents from future infectious threats without compromising their fundamental human rights?
A Human Rights-Based Approach: The Framework
A human rights-based approach (HRBA) to infection prevention and control focuses not only on the technical aspects of controlling infection but also on the values and principles of human dignity, autonomy and personal choice and control. Such an approach involves placing the individual, their dignity, and their autonomy at the centre of care. This is not a simple balancing act but rather a framework that embeds human rights principles into every aspect of decision-making, care delivery, and policy formulation. The technical and clinical dominance of IPC measures however valid should never be at the expense of individual human rights.
- Participation and Autonomy
One of the cornerstones of a human rights-based approach is respecting the autonomy of the individual. Throughout the pandemic, many older people in care homes had little or no say in decisions about their lives, often because those decisions were made quickly and with public health as the primary focus. Moving forward, we need to ensure that residents, their families, and care staff are active participants in decisions about infection prevention and control. This includes not only informing residents about risks but also allowing them to make choices that reflect their values and preferences. A person’s right to family life, for example, should not be easily overridden in the name of IPC.
- Proportionality
The principle of proportionality requires that any measures taken are the least restrictive necessary to achieve the intended goal. In the post-Covid era, IPC measures must be carefully calibrated to avoid overreach. Blanket bans on visits or social interaction cannot be justified when more nuanced and individualised approaches, such as testing or social distancing, can be employed. Research has underscored the importance of maintaining human contact for well-being, and we must ensure that future measures respect this vital need. The speedy implementation of the full scope of Anne’s Law in Scotland is a case in point.
- Dignity and Quality of Life
Infection prevention measures should never undermine the dignity of the residents. For many in care homes, quality of life is just as important – if not more so – than mere survival. Research from The British Medical Journal (2023) highlights the severe psychological impact of extreme restrictions, noting that many residents felt “dehumanized” by the rules that governed their daily lives during the pandemic. Any IPC framework must therefore prioritise preserving a sense of normalcy, allowing individuals to continue engaging in activities that bring them joy, purpose, and connection.
- Accountability and transparency
During the pandemic, decisions were often made behind closed doors, with little transparency or input from those most affected. A human rights-based approach requires a commitment to openness and accountability. Care home residents and their families must have access to clear, honest information about the reasons behind any IPC measures and be provided with opportunities to voice concerns, ask questions, and seek redress if they believe their rights are being infringed upon.
Learning from research Post-Covid
In the aftermath of the pandemic, research has provided us with critical insights into how IPC measures can be designed to protect both physical health and human rights. For instance, studies suggest that hybrid approaches to visiting can significantly reduce infection risk while maintaining essential social connections. Additionally, a study published in Age and Ageing (2022) highlights the effectiveness of integrating regular testing and infection control education for both staff, residents and family which can reduce the need for more draconian restrictions.
Crucially, research has also shown that infection control policies developed in partnership with residents, staff, and families not only yield better outcomes but also foster greater trust and compliance. Involving people in these processes reinforces the sense that they are not passive recipients of care but active participants with rights that are respected and upheld.
A path to ethical IPC care
The lessons of Covid-19 demand that we rethink our approach to infection prevention in care homes. It is no longer acceptable to prioritise safety in a way that strips individuals of their humanity. A human rights-based approach offers a framework through which we can safeguard residents’ health while also affirming their dignity, autonomy, and right to a meaningful life.
As we look to the future, we must commit ourselves to an ethic of care and support that is not only responsive to the needs of infection control but also rooted in the rights and dignity of every older person. This is not just a policy shift; it is a moral imperative.
We owe it to our older generation to create a future where care and support in a care home during a pandemic is not about survival alone but about living fully, with personal and individual choice, even in times of crisis. We really do need to ‘move the needle’ and reset the human rights conversation on IPC.
Donald Macaskill
Photo by Kelly Sikkema on Unsplash
