Life after loss – One year on

The death of a child is a profoundly devastating experience for every family. It has lifelong impacts on all family members, together and individually, as they piece together a new life without the physical presence of their child. Families experience and process intense grief in very individual ways, facing varied challenges and a rollercoaster of often unpredictable emotions. In this episode a family shares their experience of grief and loss following the death of their child and sibling ten years ago. They explore the ways they have adjusted over time and how they continue to honour and remember their loved one.

The death of a child goes against the natural order of life events. For many families, planning their child’s funeral can be a daunting, overwhelming, and highly emotional time. Some families like to plan, while others are unable to discuss the impending death of their child until after it occurs. Some families may have specific requirements, cultural and religious tradition or rituals that are important and help to bring comfort. Some children like to be included in the planning of their own funeral. This episode explores two families' experience of taking on the unimaginable task of planning their child’s funeral. They also discuss the ways they continue to remember and honour their child’s memory in death, and how rituals support their continued connection with their child.

Aspects of hope and spirituality in paediatric palliative care (PPC) are unique to every child and family, and closely attuned to a family’s beliefs, attitudes, values, and culture. Caring for a child and family’s spirit should be seen as a vital component of holistic PPC, along with the physical, psychological and social components of care. The role of spiritual care takes on greater importance as a child approaches the end of their life. While some children and families feel conflicted about hope and spirituality, many seek opportunities to find meaning, purpose, and fulfilment in their lives. In recalling their experiences of caring for their children, two families consider what hope and spirituality mean to them, and how their views may change over time.

Adolescents and young adults are a unique population, with distinctive developmental needs and challenges. Adolescence is a time of emerging autonomy, fledgling independence, development of self-identity and connection with peers. Adolescents with life limiting conditions are confronted with considering their own mortality and face complex developmental and spiritual contradictions. Adolescents require an opportunity to be involved in their care decisions, address unfinished business, voice their own wishes, have their hopes acknowledged and live full lives. In this episode we hear from parents of young people who have died from a life-limiting illness. These parents reflect on the experiences of their adolescents who endured the complexities of their terminal illness.

The needs of individual children and families can be very different. This is the case when a child is living with illness, and at the end of their life. Families vary in where they wish to be, and who they want around them. Families need opportunities to ask questions and to feel supported with the right information at the right time. This episode explores how families prepare for and navigate the devastating loss of their child. Parents discuss their different needs for information and guidance, and how to know what you don’t know. They bravely share their thoughts and what they wish they had known so that other families can learn from their experiences.