Better care and support for children who are grieving
A nurses award-winning bereavement support initiative is making a big difference to families facing loss
Angela McDonald knows what it is like to lose a sibling during childhood. Forty years ago my brother, Clyde, died. I was four years old and he was two or three, although it seems like it was only last week, she says.
My father picked me up at my foster home and drove me 200 miles to the funeral. But it had already taken place so he just took me back.
Clyde, my brother, was never spoken about from that moment on, but I think of him often. It is a powerful memory that I have carried with me all my life.
Ms McDonald says it...
A nurse’s award-winning bereavement support initiative is making a big difference to families facing loss
Angela McDonald knows what it is like to lose a sibling during childhood. ‘Forty years ago my brother, Clyde, died. I was four years old and he was two or three, although it seems like it was only last week,’ she says.
‘My father picked me up at my foster home and drove me 200 miles to the funeral. But it had already taken place so he just took me back.
‘Clyde, my brother, was never spoken about from that moment on, but I think of him often. It is a powerful memory that I have carried with me all my life.’
Ms McDonald says it is not unusual for people to take some time to understand the significance of bereavement in their lives.
‘I believe the voice of the child and family in bereavement must be heard, valued and supported. If we can improve the practice in bereavement care for families, children and carers by hearing their voice and what matters to them, hopefully they will have time to grieve and adapt in their own way to the changes in their life.’
Ms McDonald, who works as part of the bereavement support team at Salford Royal NHS Foundation Trust, won the Supporting Carers category at the RCNi Nurse Awards this month.
Families and children who experience the death of a sibling or a significant other in hospital or the community can feel emotional, isolated and powerless. Anecdotal evidence from practitioners at the trust suggested they had limited access to bereavement education and training that they could use to support families and children.
Ms McDonald, who has more than 20 years’ experience of working with children and families in the UK and abroad, was appointed to the bereavement service at Salford Royal as a bereavement trainer for children and families to address that gap.
She was keen to take up the challenge of the new role, having seen at first hand the importance of support for families. A family with whom she had built a relationship had experienced problems after the death of their son, who had a rare syndrome. One year on, it was clear the daughter’s challenging behaviour was because she could not rationalise the death of her much-loved brother, who she had grown up with and shared a room with. Ms McDonald arranged for counselling at the family home.
‘The difference after four or five weeks was amazing,’ she says. ‘The daughter started sleeping in her own room again and the mum and dad were able to sleep in their room. The mum told me “you saved my marriage, my daughter and my sanity”.
‘I had a real connection with this lovely family and this experience had a profound effect on me. I wanted every family I came into contact with to have a bereavement service that could help them as this family had been helped.’
Her brief in her new role was to provide direct support for children and families, and to train families, carers, teachers, local authority teams and community groups across religions with the skills to cope with bereavement.
Armed with her personal and professional experience, Ms McDonald set about scoping the service, looking at 33 bereavement support services across Greater Manchester. She had discussions with a wide range of people who came into contact with bereaved people to see what they would want from a service aiming to support bereaved children and families and those caring for them.
'The children really wanted time with Mum'
‘I was asked to go to intensive care where there were three children aware of their mum’s imminent death. Dad and their grandparents were being their rock, but the nurses felt they needed tools to help support the children,’ says Angela McDonald.
‘The children really wanted to spend some time with their mother and chose to have a pamper day. We ensured that the girls, with a friend and their mum’s friend, got to pamper their mother – painting her nails and doing her hair.
‘A staff nurse was concerned about her communication with the children so I gave her a reading book for the youngest about death and dying and what it means, and answers to questions six to nine year olds might ask.
‘The nurses had some time with the family. The teenage daughters and father then sat with the younger sibling to explain what was happening and going to happen.
‘The staff nurse – who had more than 20 years’ experience – just needed someone to walk beside her while she walked beside that family. She was bowled over by that experience and has used those skills again and again since. It has improved her practice.’
‘No like-for-like service was identified, such as a full-time, whole-time equivalent nurse practitioner for families and children in a hospital or a community environment,’ Ms McDonald says. ‘Only the maternity and neonate environments identified practitioners to support families.’
She also investigated what staff thought bereavement training should look like and how it would be accessed. ‘I wanted to know their learning needs and what was important to their practice.’ The result was a range of measures to improve support for children, families and staff.
Central are four one-day workshops created and delivered by Ms McDonald to enhance the skills of people providing bereavement care. Sessions include: children and bereavement, loss and bereavement, and communicating with families and children.
More than 120 practitioners have attended, including social workers, nursery nurses, health visitors, school, district, community and bereavement specialist nurses and nursing students. Ms McDonald has also delivered workshops to family nurse partnership teams, community clinical leads and consultants in intensive care.
Feedback has been positive. ‘It gave me permission to change hearts and minds,’ said one social worker. A health visitor commented on ‘how important these sessions are to help agencies work more collaboratively’.
Ms McDonald also developed a set of tools, including signposting resources, so hospital staff can give the right care to children and families irrespective of place of death. Key for practitioners, she says, is having conversations with the family to find out what matters to them and doing what they can to support them (see box).
Tips for supporting children and families
- Discuss with the family the words and conversations they may want to have with their child.
- It is important to have an awareness of conversations already had with the child so they can build on this.
- You need to know what beliefs the family has about an afterlife, so this can be respected. It is good for the child to hear the same story, so they do not become confused.
- Give the child time to ask questions in their own way. This can be informal while watching TV, having dinner or at play time. Use clear and concise words when telling the child what has happened. Misconceptions are common among children.
- Answer questions as honestly as possible – it is okay to cry and express emotions. Make sure the child understands it is not their fault the death has happened.
- Do not use phrases such as the person ‘went away’ or ‘went to sleep’. Children may become confused as people often go away, but then return. Also they could become frightened of bedtime as they may associate sleep with death.
- Let the child know that expressing emotions and asking questions is okay, but you may not have all the answers.
- Encourage people to remember good things about the person who has died and maybe plan special days at favourite places once spent with this person.
- Talk with the child about what to expect in the next few days.
- Provide parents with information about support, such a bereavement groups for children or school support.
- Seek help from other professionals
NHS England experience of care lead for community, primary and integrated care Jen Kenward was on the judging panel for the awards. She says: ‘Angela’s work stood out as it demonstrates a whole family approach to supporting carers.
‘She embodies the 6Cs in one nurse. When you meet her, you feel this is a nurse with exceptional knowledge – someone you can have confidence in and would welcome into your home.’
Salford Royal executive nurse director and deputy chief executive Elaine Inglesby-Burke agrees: ‘When a mum or dad is grief-stricken, the impact of this on children can be forgotten, so Angela works with clinical staff and families to empower them to support young people during such a difficult time. We are thrilled her excellent work has been recognised.’
Word of Ms McDonald’s work is spreading throughout Greater Manchester, Liverpool and The Christie NHS Foundation Trust, as well as tissue and organ donation services.
‘I feel privileged to do my job. It saves marriages and children’s mental health,’ Ms McDonald says. ‘It’s about reducing the risks’.
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