How a specialist cystic fibrosis nursing team developed a memorial event for bereaved family and friends
Abstract
The death of a person with cystic fibrosis is a profound emotional experience for families, friends and the specialist cystic fibrosis team caring for that individual. To enhance support for bereaved families, nurse specialists at the Cystic Fibrosis Centre in Newcastle upon Tyne arranged a memorial event as an innovation in our services. We describe our experience of the practical arrangements of running the event and report the feedback from relatives and staff who identified positive themes and suggested improvements. The event was judged to have been a beneficial experience by both relatives and staff who attended.
Citation: Anderson A, Bourke S (2024) A nurse-led memorial event for families bereaved by cystic fibrosis. Nursing Times [online]; 120: 3.
Authors: Alan Anderson is cystic fibrosis nurse specialist; Stephen Bourke is consultant physician, both at the Cystic Fibrosis Centre, Newcastle upon Tyne Hospitals NHS Foundation Trust.
- This article has been double-blind peer reviewed
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Introduction
The death of young adults with cystic fibrosis (CF) is a profound emotional experience for the person’s family, friends and the CF team. Bereavement is a natural process and people often have considerable resilience in navigating the mourning process with the support of their families and communities, without the need for professional carers to get involved. Some clinical services, such as hospices or intensive care units, hold general annual commemoration events for relatives and friends of people who have died in their service, but it is rare for CF teams or other specialist adult services to organise such events (Thomas-Diceman et al, 2011).
We were aware that families and friends of those who had died of CF had unmet bereavement needs and may feel a loss of connection with the clinical team. Such feelings and sense of detachment is something identified by Bourke et al (2016). The nurse specialists have a particularly important role in speaking with families and, after seeking relatives’ views, they decided to arrange a memorial event for relatives and friends of people who had died at our CF centre.
This was seen as an important occasion but there were some concerns as to how best to meet the needs of the families who were at different stages in their grief, and who had differing attitudes and perspectives about approaches – that is, religious or secular – to commemoration events. This article outlines our experience of planning the event, the practical arrangements, and reflections on feedback from relatives and staff who participated.
Memorial event
This was the first such event for our CF service. We identified all patients who had died at our CF centre over the previous 15 years and sought the advice of the hospital chaplain, whose knowledge and skills could be used to help us arrange the event.
An invitation leaflet outlining the event was sent to families. It included the date, time, location, travel directions and availability of refreshments, and highlighted that it would give an opportunity for them to meet the CF team and other families on the day. The event was described as a “time to remember”, “an opportunity to gather and treasure memories”. It was explained in the leaflet that the meeting was being held in a church, but was designed to allow people of all faiths – or none – to remember in their own personal way. Families were encouraged to contact the CF nurses for more information and were offered the opportunity for the name of the person who had died to be read out and a photograph displayed.
As well as the adult CF team, paediatric teams were also invited, as they may have known the deceased and their families during their time at the children’s CF clinic.
Between 2004 and 2019, 86 deaths from CF had occurred at the centre. Some relatives were no longer contactable but, in total, we were able to reach around 50 families, 29 of whom accepted the invitation to attend. Two current patients whose siblings had died of CF also attended. Another 11 families wanted to attend but had difficulties doing so: five were due to be on holiday, three indicated they were in poor health, two said it was too far to travel, and one had had a recent family bereavement.
Most of those who couldn’t attend sent photographs to be displayed and asked for the name of the deceased to be read out. Eight families declined the invitation, citing reasons such as “prefer to remember privately”, “not for me”, “had a very difficult time after the death”, “too upsetting”, and “too soon”.
In total, 80 people attended the event: 66 family members and 14 members of the CF team. It was held in a church on a Sunday afternoon in June 2019, and lasted for around one hour.
The CF team met families and friends as they arrived, gave them a programme of the proceedings, a candle and a memory card, and explained the event. The chaplain then invited them to participate in any aspects they chose, with no need to engage in anything with which they were not comfortable. He explained there would be a mixture of religious and secular elements to cater for the differing needs of those present. The components of the memorial element of the event are outlined in Box 1.
Box 1. Components of the memorial event
Welcome and introduction by hospital chaplain
Reflections
Personal reflection by a relative of a person who had died of CF
Personal reflection on providing care for people with CF by a doctor
Readings and poems
Memories Build a Special Bridge (Emily Matthews), read by the father of a person who had died of CF
In the Summer Sun read by the audience together
Forever Remembered (Injete Chesoni)
Love and Go On (Anonymous), read by a nurse from a paediatric CF team
Music comprising hymns and songs
For the Beauty of the Earth (Folliott S Pierpoint)
For the Fruits of This Creation (Fred Pratt Green)
Best Thing That Ever Happened to Me (Jim Weatherly)
There You’ll Be (Faith Hill)
Somewhere Over the Rainbow/Wonderful World (Harold Arlen)
Prayers led by the chaplain
The Lord’s Prayer
When someone you love dies
Acts of remembrance
Reading by CF nurses of names of the deceased as their photographs were displayed
Lighting of candles throughout the audience as music played
Placing of a memory card and message on a memory tree by relatives
CF = cystic fibrosis
The memorial was followed with refreshments in a nearby hall for about one hour, during which tea and coffee were served. A memorial cake with a CF emblem was cut and distributed to attendees. This provided a helpful focus in interacting with those present. CF team members, including the paediatric CF team nurses who often knew families well from the past, circulated the hall speaking with families. The chaplain, palliative care team and CF teams were vigilant to identify anyone who might have appeared distressed or alone, but no concerns were raised or identified when mingling with families.
Evaluation
Both the families and staff who attended were invited by email to provide feedback on the event, including:
- Their overall comments;
- What they would change, and would like added or removed for future events.
Most feedback from families was overwhelmingly positive. Fig 1 illustrates some of their comments. Some people were uncomfortable with the religious content and would have preferred the event to be held in a hotel rather than a church. However, many of the families and clinical team found that the experience and expertise of the hospital chaplain were particularly helpful in running the occasion.
Suggestions for improvements or amendments were to:
- Hold such an event every 2-5 years;
- Include some “fun anecdotes that add personality”;
- Consider the opportunity for informal linking with other bereaved families.
Most families and staff welcomed the combination of readings, reflections, hymns, prayers and music.
Feedback from staff (Fig 2) was supplied from 10 of the 14 staff who attended. They all rated the event highly, with scores of 8-10 on a scale from 1 (poor) to 10 (outstanding). Staff were also asked to give feedback on any comments they received when mingling with relatives during the event; these were were universally positive – for example “lovely to see the team”, “very special”, “would like another event” and “appreciate that staff don’t just forget the person”.
Considerations
Members of the CF team often attend funerals and meet with families, but relatives may interpret the person’s death as the end of the professional relationship. The Cystic Fibrosis Trust, as a national charitable organisation, provides very helpful advice, support and resources that help people who have been bereaved by CF work through the mourning process, but sometimes families may find it helpful to meet with their own CF team to tell the story of their grief, and to meet other families affected by CF (Kim et al, 2019).
A memorial event reaffirms a meaningful sense of connection to the person who has died and to the wider community of people with CF, families and friends, clinical teams, support services and researchers (Aoun et al, 2018; Thomas-Dicemen et al, 2011). However, care is needed in organising a memorial event in case it fails to meet the expectations of families and causes distress (Thomas-Diceman et al, 2011).
Grief and commemoration are very individualised, and relatives and friends of the person who has died may be at different stages in their grief and have different needs (Cystic Fibrosis Trust, 2017). Not everyone felt comfortable about attending our event – some felt it would be “too traumatic” or was “too soon” to attend a memorial.
The acts of commemoration were particularly helpful in allowing the audience to actively participate in the event. Other commonly used acts of remembrance include the release of balloons or doves. Innovations such as virtual events or hybrid events with live streaming are increasingly being used and may make it easier for some people to participate remotely.
Although precautions were taken for staff to be alert for any distressed relatives and friends, no concerns were raised or detected. This event was judged to have been a very positive experience by both relatives and staff who attended.
Key points
- When a person with cystic fibrosis dies, the experience can be very emotional for their family and friends, as well as the specialist team that cared for them
- A nurse-led memorial event was organised to help address the unmet needs of the bereaved
- Feedback from those who attended the service outlined things that went well and suggested how future events could be improved
- Special care is needed when organising a memorial event to ensure it avoids causing distress and also meets the expectations of those bereaved
Acknowledgements
Michelle Peacock, relative bereaved by CF
Michelle Fawdon, CF nurse specialist,
Zoe Booth, palliative nurse specialist
Rachel Hodgson, CF nurse specialist
Susan Parker, CF nurse specialist
Nigel Goodfellow, hospital chaplain
Rachel Quibell, consultant in palliative medicine
Aoun SM et al (2018) What sources of bereavement support are perceived helpful by bereaved people and why? Empirical evidence for the compassionate communities approach. Palliative Medicine; 32: 8, 1378-1388.
Bourke SJ et al (2016) A service evaluation of an integrated model of palliative care of cystic fibrosis. Palliative Medicine; 30: 7, 698-702.
Cystic Fibrosis Trust (2017) Losing Someone to Cystic Fibrosis: Coping with Bereavement. CF Trust.
Kim K et al (2019) Bereavement practices employed by hospitals and medical practitioners toward attending funeral of patients. A systematic review. Medicine; 98: 36, e16692.
Thomas-Diceman A et al (2011) End of life and the after-death bereavement process in a large adult cystic fibrosis centre. In: Pediatric Pulmonology; 34: 415.
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