The 6th KEHPCA (Kenya Hospice and Palliative Care Association) National Palliative Care Conference was held in Kisumu from the 15th -17th November 2023. Prior to the conference and on the first day (14th and 15th November) there was a children’s palliative care workshop which saw the launch of KEHPCA’s My Child Matters children’s palliative care grant. One of the sessions was on Grief, Loss, and Bereavement and the presentation was done by Erin Das, RN.
Grief is the total active experience of loss impacting physical, emotional, spiritual, and social aspects of life. The stages of grief include denial, anger, depression, bargaining, and acceptance. It is important to note that everyone’s experience is different. One’s experience may not go as expected or according to the predicted stages of depression. Everyone handles loss and grief differently because we think and process experiences differently.
Grief is a normal experience. It is not a mental illness or something to be fixed. Sometimes people feel like they are losing parts of themselves.
There is no one way to grieve
There is no right way to grieve
Grief does not travel on a predictable path
Grief doesn’t disappear, it just changes
Our job is not to fix grief
Our job is to walk with people through their grief
“Sitting with Suffering”
“We need to support families; we don’t need to have all the answers. We have to do what is appropriate for grieving children. Colouring is one of the ways children express their emotions and it is big across the globe and used as part of therapy in children.” Erin Das. Most intense grief lasts for about a year in children and sometimes longer than a year. During the first few weeks, children may experience shock or numbness. The worst period is often between 3 – 10 months, with renewed intensity around the anniversary of the loss (1 year). Parents who have lost a child describe much longer time frames needed for healing. It is a natural healing process, not a clinical condition.
Grief in Children
“Grief in children changes based on age. Infants and toddlers identify death with sleeping. Between the ages of 3 – 5, their understanding of death is the loss of someone or something. They understand it as temporary and magical. Between 6 – 10, they understand it is permanent and punishment for something they did wrong. In the adolescent stage, death is recognised as a final irrevocable act, yet accompanied by disbelief in the possibility of one’s personal death.” Erin.
Common myths about childhood grief
- Children don’t grieve
- Young children don’t understand so they don’t need to be included
- Children bounce back quickly
Children’s grief is best supported by shared experiences with family, age-appropriate information, and in the context of familiar routines.
“We should encourage families to talk about grief and normalize it. Grief is part of life and we need to find a way to have conversations about what people are going through and feeling. As healthcare providers, we can have many excuses for why we don’t give support such as being busy or focusing on giving medication. Something as simple as colouring can make a difference in a child’s life.” Said Erin.
Signals of distress in grieving children:
- Behavioral changes or outbursts
- Lack of words or concepts to share experiences
- Regressive behaviours
- Irritability, Anxiety
- Somatic symptoms
- Entrenched or prolonged distress without relief
Appropriate support strategies for children
- Listen carefully, and encourage parents and families to seek support
- Play therapy, spontaneous and structured opportunities
- “Take a break” from the intensity of grief
- Emotional expression in the way the child prefers
“Parents can grieve differently. A mother and father experiencing the same loss can grieve differently and each may need different support.” Erin.
Here are some strategies for addressing grief in a dying child:
- Allow the child to take the lead in asking questions and identifying needs
- Create an open atmosphere for discussions
- Answer questions honestly and openly
- Acknowledge cumulative losses: physical, emotional, social, and intellectual aspects
- Create opportunities to leave a legacy focusing on parents
- Always consider the parents and seek them for guidance on the type of support they want
- Offer extended services if available including support groups, counseling
As healthcare providers … what can we do?
- Emotional support
- Anticipatory guidance: what to expect
- Information: what happened, what will happen
- Active listening: concerns and feelings
- Suggestions for managing coping in a healthy way
Erin finished the session by sharing her personal journey with grief, loss and bereavement in memory of their daughter.