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.
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.
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.
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.
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.
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.
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.