Childhood bereavement: Helping children deal with death

When a parent or carer dies, children often feel like the odd one out among their friends. In fact childhood bereavement is more common than many think.

Estimates prepared by the Childhood Bereavement Network (CBN), using census and mortality data, suggest more than 40,000 children and young people face the death of a parent each year in the UK. Many others are bereaved of a brother, sister or someone else close to them. One 2015 study found more than a third of schools in one local authority area had at least one pupil who was recently bereaved of a parent or carer.

When children and young people taking part in CBN's "video talkshops" project shared their experiences of bereavement, they were clear on what did - and didn't - help them.

"My mum was like scared to cry or show any emotions in front of me because she thought that it would make me upset," explained one boy. "So my mum was trying to avoid me and that didn't really help."

Others described how support from their school made all the difference - as did the opportunity to meet other children also going through the grieving process.

"It's really reassuring to know that you're not the only person that's going through this situation," said one contributor.

However, the provision of this type of support is often patchy despite the fact studies show that not getting the right help at the right time can affect health, education and relationships in childhood and into adulthood. A 2015 literature review for CBN found the death of a parent was associated with increased risk of low self-esteem, mental health difficulties, unhealthy lifestyles, disruptive or criminal behaviour and academic underachievement, especially among children from disadvantaged backgrounds and those who had suffered multiple losses.

Longitudinal studies, particularly from the US and Scandinavia, show children's responses to a death in the family depend on many different factors including their age, personality and the way they and their family cope with stress. Very often, different family members will react to bereavement in different ways. This can be a source of tension in itself with parents and children trying to protect each other and struggling to communicate openly.

For many families, the death sets off a cascade of other changes such as new childcare arrangements and working patterns, or moving house and school. The Harvard Child Bereavement Study found these changes were associated with worse mental health. The longer the changes persisted, the greater the impact. The study found children's reactions were also influenced by the relationship they had with the person who died, the way the death happened and their opportunity to prepare for it.

Sadness, anger, guilt and fear are common reactions reported across studies, and can lead to behaviours that are difficult to manage at home and school. Many parents notice younger children regressing to an earlier stage of development, while older ones might become withdrawn or show risky behaviour. The social media response from parents during TV programmes such as Rio Ferdinand's #BeingMumandDad show when parents are grieving themselves - and learning to parent on their own - it can be difficult to deal with new and challenging behaviours, keep routines going and provide for the family financially.

• Northumberland
  Hospice supports bereaved teens
  
  "It's a weight you are carrying around," says 18-year-old Anna. "Grief is unexpected and will get you at the worst time." She is sharing her experience in a video put together by Tynedale Hospice at Home's fortnightly film club. The film is used by the Tynedale team to support other bereaved teenagers.
  
  "It is a comfort for teens to see something that is so honest and not sugar-coated in any way," says family support practitioner Emma Andrews, who works with 14- to 18-year-olds. "Teenagers are already going through a challenging stage of life and when you put bereavement in the mix they can find it particularly hard to manage."
  
  The hospice provides its service for free with a BBC Children in Need award of £84,655 over three years covering staffing costs. Teenagers are offered one-to-one support, delivered by practitioners trained in "active listening". "We don't describe ourselves as counsellors - if someone needs extra support we refer them to other services," says Andrews. "Our philosophy is normalising grief - it is not a sickness, it is the price you pay for love. Young people tell us exactly what happened and we help them manage their grief so they can move forward."
  
  There are a number of activities available to young people after the one-to-one sessions, giving them the chance to come together and share their experiences. The hospice's cosy Rainbow Room is brimming with art and craft resources. Beads are used to create memory strings which can be kept in a pocket, with each bead representing a particular memory. Young people particularly like the Jenga game, says Andrews. "On each block we have written questions to help children talk, from ‘my favourite film is…' to ‘a mum is…'"
  
  Teenagers might attend outdoor activity days or sessions around dance, drama or film making. The hospice also runs intergenerational sessions, bringing young people together with bereaved adults to share their experiences. "Our door is always open so they can come and go when the need arises," says Andrews. "You can't package grief into six sessions - it is a lifetime of managing your loss."
• By Charlotte Goddard
  

Revisiting grief

Bereavement isn't something that goes away after a few months. Studies following bereaved children over time reveal children often revisit their grief as they get older and face further changes or develop their awareness of what the loss means for them, re-experiencing it in new ways. This can be disconcerting for the adults around them.

Schools can be a respite from the pain of grief at home, but some young people in the video talkshops project said no one acknowledged what had happened to them, or that support dropped away as people expected them to be "over it by now" or simply forgot. Young people consulted by CBN say pastoral support systems need to be flexible to ensure support meets their needs and wishes. This includes how and what the rest of the class will be told; how to manage overwhelming feelings that bubble up; and what adjustments will be made to expectations about progress. Staff need to keep an eye out for bereavement-related bullying and talk to the child and family about passing on information to new teachers at the end of the academic year.

When it comes to helping children develop resilience in the face of loss, research and the experience of UK bereavement services suggests providing opportunities to meet other bereaved young people can help them to feel less alone and share ideas about how to cope. The Get Together project in Northern Ireland brings whole families together (see case study). However, the stepped care approach outlined in CBN's Grief Matters for Children campaign also identifies some will need one-to-one support.

Many hospices such as Tyndale Hospice in Northumberland (see case study) provide support to children of their patients, often helping to prepare children for the death as well as supporting them afterwards. Support for children bereaved by a sudden death - such as a heart attack, car accident or suicide - is harder to come by in many areas. CBN estimates only about two thirds of the country has a service open to all children no matter how they have been bereaved.

However, even where these services exist, they often have long waiting lists, or families have to travel a long distance to access them. The vast majority are in the voluntary sector, funded by a precarious mix of grants, contracts and local fundraising efforts. Many services are reporting increasing demand for their support - and increased complexity in bereaved families' lives - in the wake of cuts to other areas of children's services.

• Oxfordshire
  Charity provides advice to schools
  
  Grief support charity SeeSaw offers telephone and face-to-face advice and training to schools dealing with family bereavement or the death of a pupil. "Over the last seven years about 70 per cent of state schools and 55 per cent of private schools in Oxfordshire have contacted us for support," says Lesley Duff, Seesaw schools and families practitioner. "Last year 90 schools contacted me following a bereavement of some sort."
  
  When a child dies unexpectedly, the charity is notified by the rapid response team at John Radcliffe Hospital and put in touch with the school. Following the sudden death of a year 9 pupil last year, Duff met with the head teacher to talk through the school's initial response when it came to sharing information and providing support. This has to be quick because news spreads so rapidly through community and social networks, she explains.
  
  The following day Duff spoke to all school staff about what to expect from pupils' behaviour in the next few weeks, how to support them, how to respond to difficult questions, and the need for staff to look after themselves too. She then met with a smaller group of year 9 staff who were supporting the closest friends of the boy who died. Duff also prepared resources to help parents understand their children's possible reactions. "In the longer term we might look at how you commemorate the life of a pupil who died with a service or more permanent memorial on the school grounds," she says.
  
  When a child has suffered a family bereavement staff often want to know what practical steps they should be taking. SeeSaw's resource pack outlines actions such as identifying a member of staff as a contact point for the bereaved family and giving a child a "time out" card which they can use to leave the classroom quickly. Duff also runs general bereavement training both in informal groups and whole-school sessions. Most of SeeSaw's services are free but there is a small charge for general training. The charity's total running costs are around £350,000 a year, with 90 per cent coming from fundraising.
  
  One of the biggest challenges is ensuring a whole-school approach to bereavement support. "Sometimes it's seen as an issue for the school counselling service but it is about every adult a child comes into contact with," says Duff. "It's about showing you understand why they may not have handed in their homework or why they are not paying attention in class."
  
  By Charlotte Goddard
  
  

Improving the evidence base

To help improve services' sustainability, CBN is working with members to improve the evidence base for their effectiveness. This includes validating a new outcome measurement tool that gets to the heart of the changes children and their parents want to happen when they access support, and developing templates to help demonstrate the savings this support can make to other services such as child and adolescent mental health services, education welfare and children's social care.

Part of the challenge is bereavement policy sits across many services including end-of-life care, mental health, public health, emergency preparedness, primary care and education, with no overall national government co-ordination. Recent government initiatives such as the Children's Mental Health Green Paper, the Loneliness Strategy, the NHS Long Term Plan and GP contract, and curricula for health education and relationships education include an array of opportunities to address bereaved children's needs: the challenge is to pull this together into something meaningful at a local level.

CBN's Grief Matters for Children campaign sets out what the organisation believes should be available in every area, and local authorities and their partners can use this to audit their local provision. Here are six key ways local partners can work together to make sure support is available at the right time and the right level.

1. Make sure there is a local system for providing information proactively to families when children are facing the death of a parent or sibling. This should include what children and young people's grief is like, tips and reassurance to parents and schools, and how to get further help. For example, many coroners distribute information about supporting children following a suicide.
2. Build confidence through training for staff in settings for children and young people. This should cover how to respond to bereaved children and their families and where to go for more support if a child's reaction is causing concern. Most local child bereavement services provide training for partner agencies while Child Bereavement UK provides e-learning for schools.
3. Prioritise sustainable funding for local child bereavement services to provide guidance to parents and children's professionals before and after children experience a death, and specialist support to children including those who are vulnerable and traumatised. Leeds City Council recently consulted with local bereaved families to inform their commissioning of a new city-wide service.
4. While events involving mass casualties are rare, ensure voluntary sector bereavement organisations are involved in planning the local response to major incidents through the Local Resilience Forum and working directly with emergency services and others. The Cabinet Office offers useful advice.
5. Provide opportunities for children and young people to learn about managing feelings, changes in families and seeking help through new health and relationships education curricula. Many local services can help plan and deliver lessons and CBN is developing guidance for schools about how to choose high-quality resources and input.
6. Support parents to put plans in place in case they die before their children grow up, such as writing a will and appointing guardians. Hospice and palliative care workers are used to helping families with this sensitive work, but local authorities and health and business partners can help too, making sure information and resources are available when families might be more willing to think about these things, such as when registering a birth, changing a benefit claim or taking out a financial product. Check out www.planif.org.uk
   

• Northern Ireland
  Family scheme cuts isolation
  
  Get Together - Bereaved Families Discovering is run by peace and reconciliation organisation Corrymeela and charity Cruse Bereavement Care in Northern Ireland. Launched in October 2014, in its first four years the programme worked with 67 families from across Northern Ireland who had been bereaved of a parent or child. Funding comes from a five-year National Lottery Community Fund grant of £676,384, and the charity recently applied for a two-year extension.
  
  The project aims to reduce the isolation experienced by many bereaved families and increase confidence and resilience. "We create a space for families to work through their grief in their own way," says Elaine Roub, young cruse co-ordinator at Cruse Bereavement Care.
  
  Families are invited to an activity day which includes creative and outdoor sessions. They then attend a residential weekend at Corrymeela community centre overlooking the sea. "It's a calm place for kids to play and parents to relax over a cup of tea," says Roub.
  
  A home visit prior to the residential allows families to ask questions and suggest things they'd like to do. Some activities focus on relaxation and mindfulness, while others centre on art or outdoor play. Some involve the whole family while some are specifically for children or adults. "One minute two adults are chatting about the latest soap opera and the next they are talking about the day their partner died," says Roub. "Or two kids are painting T-shirts, and one will say ‘It must be harder for you because your sister was older when she died'. And the other will say ‘It must be harder for you because you didn't get to know your baby sister very long'. These conversations just happen." After the residential, families often create their own informal support networks.An evaluation by Gauge NI found 68 per cent of children under 12 who took part showed a reduction in isolation and increased communication skills. Evaluators found the project resulted in a social return on investment of £12 for every £1 invested.
  
  Get Together recently started working with refugee and asylum-seeking families, adding three bilingual volunteers to the team. "The isolation of grief is enhanced by being landed in another country. It's important to discover that common ground with other families," says Roub.
  
  By Charlotte Goddard
  
  
• The Childhood Bereavement Network is hosted by the National Children's Bureau www.childhoodbereavementnetwork.org.uk