This podcast series focuses on the experience of parents of children who have died or are likely to have a short life. Despite advances in health care, children and young people still sadly die from a range of life limiting conditions. The parents in this series have been supported by palliative care teams to face multiple challenges in caring for their children. These parents bravely share the love and beauty of their children and the joy and sadness of their individual experiences. They hope their voices can support, inform, and better prepare other families who may need to face similar challenges. Season One is a collaborative project funded by the Quality of Care Collaborative Australia (QuoCCA) in partnership with The Royal Children's Hospital, Melbourne and the Victorian Paediatric Palliative Care Program. Season Two is a collaboration between The Royal Children's Hospital, Victorian Paediatric Palliative Care Program and Palliative Care Australia, funded as part of the Paediatric Palliative Care National Action Plan Project. This project received grant funding from the Australian Government. We warmly thank the parents who have generously taken part in this series.
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.
6 Jan 2023
Funerals, rituals and remembrance
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.
2 Dec 2022
Hope, spirituality and meaning
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.
18 Nov 2022
Walking alongside adolescents and young adults at the end of life
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.
4 Nov 2022
Approaching end of life - “The Nitty Gritty”
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.
4 Nov 2022
Hearing from fathers - “Just call me Dad”
Families function in individual ways, with parents taking on various roles and responsibilities across the parenting spectrum. This episode focuses on the experiences of two fathers caring for and parenting their children with life limiting illnesses.
4 Nov 2022
Life after loss -“Living in shadows and sunshine”
The death of every child is unimaginably devastating and tragic. The grief that follows is individual, powerful and lifelong — a rollercoaster of often unpredictable emotions. Families tell us it's okay to be okay, and it's okay to not be okay.
In this episode, two bereaved parents discuss the range of emotions and triggers that impacted them and their family. They share the love and beauty of their children, the enormity of their losses and how connections and memories allow them to continue to live meaningful lives.
4 Nov 2022
Communicating with siblings - “What about me?”
Good paediatric palliative care includes care of the whole family, including brothers and sisters. Parents are often fearful or anxious about how to approach conversations about illness, death and dying with siblings of their sick child. In this episode, we hear from two parents who share how they approached these conversations with their children. They share with us what worked, what was challenging, and how they keep the memory of their child alive in their family.
4 Nov 2022
An introduction to Palliative Care - “Let's talk about the elephant in the room”
The suggestion of a referral to palliative care is often scary and overwhelming. Families approach referrals in individual ways. Some avoid it at all costs, some openly embrace it and there is a vast spectrum of responses in between. Some families feel like a referral to palliative care signifies “giving up” on their child or foregoing further treatment and care. Others find value in hearing how palliative care can make a difference to support their child and family.
In this episode, we hear from three parents who reflect on how their family tackled a referral to palliative care, how they managed their fears and hesitations, and what they would like to share with other families about the experience.
4 Nov 2022
The heartbreak of perinatal and infant loss
The death of an infant before or after birth is a profoundly sad experience with many layers of grief and loss for every family. New parents are forced to confront the death of their baby and the loss of their hopes, dreams, and expectations for the future life of their child and family. Parents may experience challenges to their own identity and how they are treated by their family, friends, and community. We hear from families discussing their experience of perinatal loss and the tragedy of the death of their baby.
20 Oct 2022
Life after loss – One year on
The death of a child is a profoundly devastating experience for every family. Families live with intense grief, many varied challenges, and a rollercoaster of often unpredictable emotions. Family’s experience and process grief in very individual ways. The loss of a child has lifelong impacts on all family members, together and individually as they piece together a new life without the physical presence of their child. In this episode we hear from parents who share their family’s grief experience following the death of their child only one year ago. They will discuss the challenges they have faced, the ways they continue to honour and remember their child and how they continue to live in the wake of such tragedy.
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