Supporting and empowering carers to make their voices heard

There are an estimated nine million carers in the UK, and their contributions to society, individually and as a group, are unparalleled. Nadine van Dongen and Antonella Porta remind us why carers are the unrecognised backbone of our society.

Every day, carers look after some of the most vulnerable people around us, attending to their basic and complex needs and striving to enhance their quality of life.

But the role of caregivers is anything but simple.

In facts, caregivers often take on the task of searching for the best pathways for those they care for; also, they have to learn to provide care to their assisted ones, which is no simple undertaking. Then, as the disease or condition of those they care for evolves over time, carers go through their own change curve, adjusting their role to the new reality.

At the same time, carers need to manage all aspects of their own daily life, deal with their own emotions, and maintain their social identity. In summary, they manage a huge physical and emotional load, and have significantly unmet psycho-social needs. While patients are making significant strides in being visible and finding their own voice, supported and enabled by patients advocate groups, carers as individuals and as community are still struggling to be seen or heard.  In this optic, care-giving equates to a hidden and often overlooked form of diversity – caregivers are effectively an under-represented group, which deserve to be empowered.

Additionally, due to their sustained proximity to the patient, caregivers accumulate precious experience and knowledge that, if adequately sourced and utilised, could greatly contribute to the healthcare ecosystem and patients’ quality of life.

The untapped potential of carers 

In a patient intelligence research project conducted by PIPHealth in 2020, the importance of the carer’s voice came to light. The project included eight men diagnosed with prostate cancer who were given research questions on the quality of the content of a patient information brochure. The feedback received from the men affected by prostate cancer was mainly suggesting graphic changes for the patient information brochure.

However, when we interviewed two carers, and specifically two women married to a patient affected by prostate cancer, we were able to discuss the brochure content at a much deeper level, the carers proved more critical about the quality and quantity of the information in the leaflet, and provided insightful feedback and suggestions on how to enrich the content of the brochure.

This research project showed us that patients were maybe less critical of the quality and quantity of the information provided, arguably because their energy and focus were directed towards fighting the disease that affected them; on the other end, carers were advocating for increased information, education and support – both medical and emotional – to deal with the terminal illness of those they were caring for. Most significantly, they spontaneously reported that our interview made them feel empowered – they felt like their voice was finally heard, and that they could positively influence the healthcare ecosystem.

The countless definitions of empowerment have some common denominators: empowerment equates to enabling, equipping or authorising individuals or groups to think, behave and act autonomously, to make their decision in independent, self-directed ways and to assert control over their future.

Empowerment, as it relates to health care, implies that patient independence may be optimised by helping patients to assert control over their lives. Extending this definition to the carers group, empowering implies enabling them to assert control over their own lives, which include but are not limited to their caregiver role.

So what does it take to empower carers? While we recognise that caregivers are a heterogeneous group and each caregiver faces a unique set of circumstances, we have identified critical building blocks where an empowerment framework for caregivers can be constructed.

These building blocks are:

• Establish legitimacy. Recognise carers as critical contributors to health care solutions, and establish two-way information sharing and communication channels between them and the other key actors of the health sector.
• Provide individual support. Enable carers to access peer support, mentoring and life/executive coaching
• Value and accommodate. Build around the carer a social and work environment that preserves the social identity of the individual, value and leverage their talents and skillset, and at the same time dynamically accommodate the changes in their availability

Whilst these building blocks provide a framework for the empowerment of carers, we all have a role to play in ensuring that they assume a more central role – as stakeholders and contributing partners – in the health care ecosystem. We invite you to reflect on the piece of work you are conducting at the moment, and review whether the carer’s voice has been taken into account. Whether you are developing a patient support programme to aid self-management or writing a strategic product launch plan, carers can be a precious partner and ally.

Action steps to empower and support carers and tap into their knowledge and experience include:

• Co-creating information materials with and/or for carers, through insights projects or market research projects.
• Providing life-coaching workshops that holistically support carers, and integrating life\executive\peer coaching for carers in patients support programmes and other settings
• Ensuring that health education programs or awareness programs are directed to carers as much as patients. Consider integrating workshops and life/executive/peer coaching that is specifically directed to carers
• Provide carers with dedicated user accounts in Patient Support Programmes.

We thank you for taking the time to read this article, and hope to see you taking your own steps for the empowerment of carers.

About the authors

Antonella Porta is managing director of Shella Consulting. She has experience in pharma, consultancy and FMCG and has worked across functional and geographical boundaries. She is passionate about driving empowerment through her executive coaching practice, mentoring programs and creative workshops.

Nadine van Dongen is working on a PhD research programme at King’s College London where she is developing a behavioural patient segmentation measure to aid adherence. She is the founder of the Patient Intelligence concept and managing director of PIPHealth, an online international patient platform.