Dying Matters Awareness Week: The Culture of Dying Matters

This year's theme, The Culture of Dying Matters, focuses on how different communities and cultures in the UK feel, talk about, and deal with death and dying. We spoke to Jennie Steer, Psychotherapeutic Practice Manager, about why it’s important to understand cultural differences around grief, and how Demelza tailors our care to create a more inclusive environment for all individuals dealing with loss.

Jennie says: “Recognising cultural differences is vital as it ensures that our support is empathetic and culturally sensitive, respecting the diverse ways people experience and express grief.

“Different cultures have unique rituals, beliefs, and practices surrounding death, which can affect how people cope with loss. In some cultures, grief is expressed openly and publicly, with rituals that involve communal mourning and sharing of emotions. In others, grief may be more private, with an emphasis on maintaining harmony and avoiding disruption.

“Understanding these differences helps avoid assumptions about how someone should grieve and allows for tailored support that respects their unique needs and experiences.”

At Demelza, we provide immediate support after death, including use of our bereavement suite, post-death care and equipment use, with nursing and care staff on call. Families can personalise the bereavement suite to reflect the life and personality of their child, creating a special space to spend time together and honour their child in their own way.

“We didn’t want his death to affect our memories of Zak at home with his brothers. So we decided the best thing was for him to go to Demelza. Zak laid at rest in the Hop Garden bereavement suite surrounded by all the things he loved, and his brother Tom came to see him. The Demelza setting was perfect – it was so calm and serene.” Caroline and David, Zak’s parents

We also help families with memory making during this time, including personalised memory boxes, handprints, baubles, clay impressions and ink prints for jewellery. We have a specially trained team member who can create hand casts of the child or the family together – meaning that if they wish to, families can create lasting, physical memories to connect them with their child forever.

Jennie says: “We are dedicated to bringing comfort to families following the loss of their precious child. We never assume we know the answers, and if we are unsure about a cultural practice when working with a family, we always ask to ensure we get it right. When personalising memory boxes and items, one team member, a skilled calligrapher, even taught herself to write in other languages and characters to honour the family's wishes.

“Our memory making team (all female) have also responded at extremely short notice to visit children in hospital who were receiving end of life care. In cases where families requested memory making but were part of a faith where a body cannot be touched by women after death, our team worked responsively to ensure cultural sensitivity. This approach highlights our commitment to respecting and accommodating diverse cultural practices while providing meaningful support and a precious, tangible connection to families during such critical times.”

“Our nurse knew that our Muslim faith requires the funeral to take place within 24 hours - and she had already been in touch with a Muslim funeral director, and they invited our Imam to come and pray with us. But the thing we remember is that, after his bath, they had a white cloth ready to wrap around our son’s body, as is custom in our faith. The care, the attention to detail – even after his life- was utterly extraordinary.” Jamila and Abdul, Mohammed Yahya’s parents

Following immediate care, our bereavement support will then continue for as long as families’ bereavement journeys last – we often still see families years and even decades after the death of their child. This can include:

• Counselling: Providing a confidential and safe space for those who feel unable to cope with their grief. It offers support in processing emotions and helps individuals move forward to a new life without their child. This professional guidance can be crucial in navigating the complex journey of bereavement.
  
  
• Creative art therapies: Provide family members with alternative, therapeutic ways to process their grief through art, music, or movement instead of talking. These therapies offer a creative outlet for expressing emotions and can be a powerful tool for healing and understanding one's grief journey.
  
  
• Sibling support: Age-appropriate activities for children who have experienced the death of a brother or sister. We often support cousins and best friends too. We offer time in a safe environment to meet other children who have also experienced this loss.
  
  
• Remembrance events: During these events, families can be around others who understand their loss, continue connections with their child through art, light candles, and receive special keepsakes. These gatherings offer comfort and a sense of community for bereaved families.
  
  
• Demelza Bereaved Families Facebook Group: A wonderful resource for sharing information and providing peer-to-peer support. Families can share photos of their children, express their feelings, and receive support from others who have similar experiences. This group has a sense of community and understanding among bereaved families.
  
  
• In Touch Newsletter: A regular reminder that Demelza is always here for families, even if they don't need specific support in that moment. Families are introduced to key members of the team to ensure they feel connected and supported whenever they need it.

The type of support a family might want to engage with depends on their individual circumstances. Jennie says: “People experience death, dying, and grief very differently. Each person's journey is unique, influenced by their personality, cultural background, support system, and the nature of their loss. Some may find it helpful to talk about their feelings, while others might prefer creative outlets like art or music. Some might need immediate support, while others might seek help later.”

Adults and children are also likely to experience grief differently. Jennie explains: “Children often move in and out of their grief, a process described as "puddle jumping" in the short, animated film by Child Bereavement UK. Imagine a puddle full of sad feelings, a child may jump into this puddle when someone important to them has died. However, children can't cope with sad feelings for too long, so they need to jump out and do something distracting, like playing with friends or going to the park. This pattern of grieving is normal and indicates that a child is learning to cope with their grief.”

Children often find it difficult to express these feelings with words, so we offer bereaved children opportunities to express themselves in alternative ways, as they move in and out of their grief:

“Edward had one-on-one music and art therapy sessions in the days after Henry’s death, helping him to process the complicated emotions he was being faced with. The care didn’t stop after we left Demelza, and he has continued to have art therapy sessions at school, giving him a safe space to express whatever he might be feeling.” Sam and Hua, Henry’s parents

Jennie continues: “Adults however tend to experience grief more continuously and intensely. They often have a deeper understanding of the permanence of loss and may struggle with complex emotions such as guilt, anger, and profound sadness. Adults might find solace in talking about their feelings, seeking professional counselling, or engaging with others who have a shared experience:”

“They still support us now, more than a year on; we attend their bereavement events which give us a chance to remember Isla, and also to connect with other families who ‘get it.’ Unless you’ve lost a child as well you can’t understand what it means. I do actually want to talk about Isla, and to hear other people talk about her and hear her name, but it can be awkward – so going to Demelza for these events is really special.” Stephanie, Isla’s mum

Death is always difficult, but the death of a child can trigger complicated emotions. Jennie says: “When a child dies, the grief can be even more complex. Parents, siblings, and extended family members often face intense emotions, including shock, guilt, and devastating sadness. People often avoid mentioning a child who has died because they worry that it might cause more pain or discomfort. Sometimes they don’t mention them because they just don’t know what to say. This can make grieving families feel isolated and as if their child's memory is being forgotten.

“The loss of a child goes against life’s natural order, making it particularly challenging to process. Families may struggle with the loss of future dreams and milestones that will never be reached. We recognise that this type of grief often requires specialist support to help families navigate their grief journey.”

At Demelza, we see that no grief is the same, just as no person is the same. Respecting cultural, community, and individual differences around grief, death and dying, and understanding that there is no single, correct way to grieve, allows us to offer the space and time for grief to take whatever form it needs to. We will continue to offer support in as many different ways as we can, for as long as families need us.