How do we recognise and act upon the duality of being a family caregiver and clinician?

Dr Sarah Russell RGN, Admiral Nurse Practice and Professional Development Facilitator, Dementia UK. Florence Nightingale Foundation Travel Scholar 2018. She tweets @learnhospice

In 2018, as part of a Florence Nightingale Foundation travel scholarship, I spent over a month visiting the islands of Ireland and New Zealand. I went to find out more about advance care planning, hospice research activity, knowledge mobilisation and models of care for people living with dementia. This was an enriching experience, building thoughtful and thought-provoking networks, exploring different models of care and bringing back ideas and knowledge to practice. Part of the experience was the constant interaction between being a nurse and family caregiver.

I have been a nurse since 1986. I’ve been a family caregiver for 15 years – first at a distance, weekends and holidays and then as a full-time one at home, hospital and nursing home (Russell 2018). Many nurses experience a mingling of personal and professional roles throughout their careers (Wildon and Ardoin 2013). Treating oneself or one’s family is not taught or discussed (Krall 2008), and there are arguments that it may compromise professional objectivity, posing professional challenges to the physician (Murad et al 2019).  Ward-Griffin (2004) describes this as the juncture of the public and private domains of caregiving, where one must constantly negotiate the boundaries between professional and personal caregiving. Others have noted that nurses providing care for their own relatives have specific caregiving needs due to their dual role as a health professional and family carer (Mills 2006). They can be considered to have double vision: the perspective of being both a nurse and a family member (Tesh and Quartz 2017).

So why does it matter to consider the duality of being a clinician and family caregiver?

It matters because there are up to 8.8 million adult carers in the UK (Carers UK 2019) . Currently there are 698,237 nurses on the Nursing and Midwifery Council register (NMC March 2019), 300,000 practising doctors (GMC August 2019)  and 58,000 chartered physiotherapists, students and support workers (Chartered Society of Physiotherapy August 2019).

This means that many of us are, were or will be juggling this double role. Furthermore, there is little known about the experience of working in elderly care and being a family caregiver (Wohlgemuth et al 2013).

We are all required by our professional bodies to consider our professional relationships with our families e.g. in prescribing  and the NMC code of conduct requires nurses to promote professionalism and trust. We must also act with integrity, be aware of our own behaviour, stay objective and not express personal beliefs in an inappropriate way. I’m not sure if it is fully possible to separate within oneself the family caregiver experience from the clinician role. However, during my travel scholarship, as I used my double vision lens to share my caregiver and nurse experiences in living with and caring in dementia, I realised that I needed to find more than professional regulation to navigate the duality of being both. This was not only for my own professional practice and personal well-being, but also to give others a transparent framework to understand my interaction and conversations with them.

Reports such as Wohlgemuth’s (2013) study of healthcare providers working in geriatric care as caregivers provides a useful starting point to explore the dual role of clinician and family care giver. Wohlgemuth reported three major themes: (a) advantages and disadvantages, (b) emotional impact, and (c) professional impact of family caregiving. All included both positive and negative feelings. Carlsson et al (2016) also illustrates a useful way to view and describe the relationship between the professional and personal role. Carlsson argues nurses can knowingly juggle or move between:

• the carer (monitors the medical status of their loved ones and takes over communication with ward staff as well as the coordination of care and sometimes the care),
• the advocate (focused on how to use professional knowledge to monitor a family member's vital signs, blood tests and general health status, initially providing the patient with information and instructions about what to ask the doctors and what claims to make, as the patient's health state worsens takes over communication with staff, using professional role),
• the supervisor (monitors the patient's medical status, test results and nursing care while staying in the background), and
• informed bystander (receives relevant and adapted information with regards to their professional background).

What is helpful about both models is to provide a reflective road map to consider and articulate our roles and how to view the professional and personal boundary overlaps.

In the personal and professional world of an ageing population and multi-morbidity, I suggest that we all need to find our way of recognising and navigating the duality of being a clinician and a family caregiver. After all, we are all likely to have been, be or come to be in a caregiver role.