What a focus group study tells us about end-of-life care in nursing homes

Dr Natalie Richardson, PhD, Research Fellow, University of Nottingham shares insight into their research on end-of-life care within adult social care.

Understanding how care staff experience grief and loss is essential to delivering compassionate, person-centred care. A small-scale focus group study carried out in a Nottinghamshire nursing home offers insight into the emotional, relational and often unseen aspects of end-of-life care within adult social care.

Conducted collaboratively between practice and research colleagues, the team included a nursing associate, home manager, and a researcher from the University of Nottingham. Our study highlights the complexity of care relationships and the vital role of the wider workforce.

A ‘living lab’ approach to research in care homes

This work forms part of a wider initiative supported by the National Institute for Health and Care Research (NIHR) to strengthen research capacity in care homes and social care.

Using a “living lab” model, care staff and researchers worked together to explore real-world challenges. Staff were not just participants, but active contributors identifying priorities, shaping questions, and leading discussions. This approach ensured that findings were grounded in lived experience and directly relevant to practice.

Care homes as places of living, and dying

Care homes play a dual role: they are places where people live their daily lives, but also where many people die. This creates a unique emotional environment for staff.

At this nursing home, residents are referred to as “family members”, reflecting a strong commitment to relationship-based care. Staff develop deep, often intimate knowledge of the people they support: their histories, preferences and personalities. This becomes especially important for people living with dementia, where communication may be limited.

When staff know residents like family

One of the strongest themes from the study was the depth of relationships between staff and residents.

Staff often felt they knew residents as well as, and sometimes better than, their relatives. This could create tensions at the end of life, particularly when decisions made by family members seemed to conflict with what staff believed the resident would have wanted.

In some cases, staff took on significant responsibilities when residents had no family, including helping to arrange funerals or ensuring wishes were respected. These experiences highlight how staff often act as custodians of a person’s identity and preferences, especially at the end of life.

Supporting and mediating family relationships

End-of-life care often involves complex family dynamics. Staff described acting as mediators by supporting communication, managing conflict, and helping families focus on the resident’s wishes.

This could include:

• Encouraging estranged relatives to come together
• Supporting difficult decisions about care and treatment
• Bridging understanding between families and healthcare professionals

“A lot of people come with family conflict. Yeah, we lost a lady a few months ago, her sons, a bit at loggerheads, they didn’t like the lady’s sisters, and they hadn’t spoken to each other for years. But the lady wanted them here when she was passing. Nobody had mentioned this. So in the end I just said right, ‘what are you doing about the sisters?’”

These situations can be emotionally demanding, requiring sensitivity and in-depth communication, it is complex and highly skilled work, yet this aspect of the role is often overlooked.

Cultural differences in experiences of death and dying

The study also highlighted the diversity of the adult social care workforce. With cultural perspectives on death and dying play an important role.

Some international staff initially found aspects of UK end-of-life care unfamiliar, such as:

• open conversations about death
• advance care planning
• families maintaining everyday routines during a relative’s final days (like eating, going to work, and sharing jokes)

“I was in end of the care life duty, that time when the family is here. If they are laughing and eating nice food and something, I feel very embarrassed, because our culture is different. Oh my God, how they do it? I’m there, every moment I’m crying because this is like my mum and dad. But them relatives, they are just laughing and this, this, this. That’s strange for me. How could you be eating?”

The hidden workforce in end-of-life care

Importantly, the study included staff beyond traditional care roles, such as maintenance, kitchen and administrative staff.

These staff demonstrated the ways they:

• Build meaningful relationships with residents
• Experience grief when someone dies
• Play a role in the care environment

Maintenance staff described the emotional impact of clearing residents’ rooms after death, and the difficulty of discarding personal belongings. Some kept small mementos as a way of remembering individuals. Despite this, their contributions are rarely recognised in research or policy discussions. They can also be overlooked in conversations and updates about a resident dying.

“There’s sometimes we’ve took things to our shed that are so nice [after a resident had died], just little trinkets and stuff that you think ‘I can’t chuck it, I physically can’t chuck it’. It then puts into perspective you come on the planet with nothing and then you go with nothing.” Maintenance staff member.

Coping with grief: the role of humour and teamwork

Given the emotional intensity of the work, staff shared how they cope with loss. Humour emerged as a common and important strategy. Used tactfully, humour helped staff:

• Process difficult emotions
• Support one another
• Maintain resilience

At the same time, staff emphasised the importance of understanding individual coping styles, recognising that not everyone responds to grief in the same way.

What this means for the sector

This study highlights several important considerations for adult social care:

• Recognising the full workforce: End-of-life care involves more than just frontline care staff
• Valuing relationships: Strong, meaningful connections are central to quality care
• Supporting emotional wellbeing: Staff need space and support to process grief
• Building cultural awareness: An increasingly diverse workforce requires inclusive training and understanding of practices related to death and dying
• Acknowledging hidden work: Mediation, emotional labour and post-death tasks should not be overlooked

As the demand for end-of-life care grows, it’s essential to better understand and support those providing it. Research like this shows the value of collaboration between care providers and academic partners, and the importance of listening to staff experiences.

By recognising the complexity of care relationships and the realities of grief and loss, the sector can continue to improve both staff wellbeing and the quality of care for those at the end of life.

Have a look at Skills for Care's end of life care resources.

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