Walking the Walk: How can we use carers’ experiences to improve end-of-life care?

By Dr Erica Borgstrom The Open University, Walton Hall, Milton Keynes, UK, MK7 6AA Erica.borgstrom@open.ac.ul  (@ericaborgstrom); Claire Henry MBE, School of Health Wellbeing and Social Care, The Open University, Milton Keynes, UK (@clairehenry_); Marie Cooper, St Christopher’s Hospice, London, UK (@mariecooper100); Roberta Lovick, Lay carer representative, Norwich, UK and Kerry Jones, School of Health Wellbeing and Social Care, The Open University, Milton Keynes, UK (@Drksj39Jones). @openthanatology

Dealing with death may be a regular occurrence for staff working in health and social care. It is often unchartered territory for carers, who may experience profound distress, grief and bewilderment. How people experience this time can hugely impact the care they can provide, their wellbeing, and bereavement outcomes. Whilst care settings regularly seek feedback, there is no systematic way for understanding how feedback improves care provision and environments; it can be difficult to make changes that affect clinical practice. [1,2] 

This is where the ‘Walking the Walk’ project comes in – it foregrounds carers’ needs when looking after someone during the end of life and bereavement as part of a quality improvement initiative. The process centres bereaved carers’ experiences using key questions about what matters to them and what helps them during that time as they provide a “fresh perspective” about a setting. The team includes carers and health care professionals with expertise in palliative care (independent from setting under review); they are joined by a clinical team member from the site in clinical areas. First piloted in hospitals, it has since been extended to care homes, community ward hospitals and general practice. The process involves three stages.

WALKING THE WALK – THREE STAGES

Stage 1 involves preparation: liaising with the host site about the project’s focus and processes. The language of improvement is used to encourage open, collaborative, and interactive discussions between the project team and the host staff. It also enables the project team to acknowledge and celebrate what is working well and valued by carers, rather than focus exclusively on evaluative measures.

Stage 2 is the walkthrough of the site, including public and clinical areas. The team take notes and photographs (with permission from the site) to be shared with the host site staff. The team look at the environment, the involvement of care of loved ones, carer access to help and support, and care after death and bereavement. The team consider aspects like accessibility, signage, how welcoming areas are, what information is available and how approachable staff are, and what the facilities are like including how the deceased are transported to the mortuary and cared for. A typical walkthrough lasts anywhere between 2 – 6 hours. Staff from the host site accompany aspects of the walkthrough to hear first-hand what the carers see, feel, hear, smell and otherwise sense. For example, long-dark corridors and cluttered environments, which can lead to concerns about safety and care.

Stage 3 focuses on feedback to the host site staff via an interactive session. The Walking the Walk Team share their key observations, insights, and offer suggestions recounting ‘what was good’ and areas for improvement. Much of what is identified for improvement or enhancement can be actioned with minimal bureaucracy or expenditure. A written report follows which is reviewed by the host organisation for any corrections before being signed off. Sites can determine who has access to the report and how they want to use it; some have used it as evidence for Care Quality Commission (CQC) inspections.  

WHY IT WORKS

The success and veracity of the methodology from sites’ perspective is because of the centrality of the carer’s voice – listening directly about what can make a difference for carers. Importantly, the project team worked closely with the carers to provide training in the method, supporting them in delivering their feedback in a non-judgmental, constructive and sensitive way. Evaluations acknowledged that the independent and objective perspective of the team is highly rated, adds weight to the findings, and is productive. 

It uses an experience-based co-production approach adapted from The Fifteen Steps Challenge and Enhancing the Healing Environment. It is similar to experience-based co-design,[3] but is smaller-scale (fewer people providing perspectives) and typically quicker (one visit and feedback session rather than 12-month project). The walkthrough method is also similar to walking as an ethnographic method, which seeks to understand the transient, embodied, and multi-sensual aspects of a place in ways that other methods cannot access.[4] 

EXAMPLES OF WALKING THE WALK FINDINGS AND IMPLICATION 

A walkthrough identifies a series of examples of good practice and issues. These can range from minor items to address, sometimes within hours of a visit, to bigger problems that require financial investment and/or cultural change. For example, carers highlighted cluttered corridors that were difficult to navigate, notice boards with out-of-date information or poor signage. They noted that bereavement offices, mortuaries, or faith and spiritual spaces may have dirty windows and feel like neglected spaces.  Staff who accompanied the walkthrough and/or hear the feedback could see the potential impact this could have on relatives and carers. 

Staff were frequently aware of challenges; the initiative provided impetus and support for investment and organisational change. For example, one site expediated the processing of death certificates. Other sites upgraded visiting and viewing areas of mortuaries, and the corridors on the way to improved bereavement suites or chapels. Hospital trusts said it was relatively easy to fund such improvements through charitable sources; management should plan and oversee the maintenance of standards after the developments and stocking relevant disposables (e.g. tissues, drinks).

In all hospitals visited, the concealment cover used when transferring the deceased from a clinical area to the mortuary was reviewed. Carers noted that the blue tarpaulin is not befitting, and more respect needs to be shown to the deceased, suggesting a more sensitive and dignified covering.  

Staff at participating sites have commented on how the project has enabled them to see areas needing improvement. One palliative care consultant noted: “…it has made us think about the little things that make the difference. I am much more aware of the physical environment and it can affect carers”. Another stated that it enabled them to acknowledge areas for improvement “that our staff had not noticed or had got used to”. Moreover, since the written report highlights areas of good practice, it can boost staff morale and provide a constructive call-for-action within teams. 

TAKE HOME MESSAGES

  1. Carers can provide great insights into what is working well and what can be improved when it comes to end of life care and care after death
  2. Consider the physical environment and processes experienced by carers using a multi-sensory approach. This should include corridors and mortuary viewing spaces as well as how bereaved people are informed about end of life and after death practices. 
  3. Try to consider different needs of visitors, such as accessibility, meeting basic self-care functions (such as access to water and food when visiting), and arrangements for supporting a full range of faiths and spiritual needs, including those who may have no specific faith. 

 

Photo Caption: The Walking the Walk Team visiting the James Cook Hospital. Left to right: Anna Mills and Roberta Lovick  (Expert by experience – carers ), Marie Cohttps://blogs.bmj.com/spcare/files/2022/07/Picture1.pngoper and Claire Henry (Clinical Experts), and Chris Ward Nurse Consultant (site host).

Acknowledgments: The authors would like to thank the host sites that have participated in the initiative. 

Funding: Funding for the Walking the Walk project was provided by NHS England. Funding for writing this short report was provided by The Open University. 

References:

1 Sheard L, Marsh C, O’Hara J, et al. The Patient Feedback Response Framework – Understanding why UK hospital staff find it difficult to make improvements based on patient feedback: A qualitative study. Soc Sci Med 2017;178:19–27. doi:10.1016/J.SOCSCIMED.2017.02.005

2 Kumah E, Osei-Kesse F, Anaba C. Understanding and Using Patient Experience Feedback to Improve Health Care Quality: Systematic Review and Framework Development. J Patient-Centered Res Rev 2017;4:24. doi:10.17294/2330-0698.1416

3 Borgstrom E, Barclay S. Experience-based design, co-design and experience-based co-design in palliative and end-of-life care. BMJ Support Palliat Care 2019;9. doi:10.1136/bmjspcare-2016-001117

4 Bates C, Rhys-Taylor A. Walking through social research. London: : Routledge 2018. https://www.routledge.com/Walking-Through-Social-Research/Bates-Rhys-Taylor/p/book/9781138393141 (accessed 10 May 2022).

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