Resources for bereaved parents and the health professionals who support them

Parents whose child dies from cancer experience complex layers of loss: loss of their child, of pre-existing formal and informal relationships in their community, and the loss of what some term, the ‘hospital family’.
The Compass study aimed to further understand the impact of these three components of loss on bereavement.
Findings
Distancing from the local community and engaging more fully with the treatment team and other peers meant for many families a new community of support was established in the hospital. In bereavement, parents’ expectations of ongoing care from the treatment team were often not met. Simultaneously, parents described barriers to accessing formal and informal support in the community; feeling the need to ‘maintain face’ within their social networks; feeling the privacy of their experience inhibited their capacity to seek support; and simply not knowing where or how to access support.
Resources
The findings of the Compass study have informed the development of a suite of resources to enhance support for bereaved families, the community of supporters and professional carers. The By My Side resources were developed in collaboration with Redkite, a leading source of support for children and young people diagnosed with cancer and their families in Australia.
The Compass study aimed to further understand the impact of these three components of loss on bereavement.
Findings
Distancing from the local community and engaging more fully with the treatment team and other peers meant for many families a new community of support was established in the hospital. In bereavement, parents’ expectations of ongoing care from the treatment team were often not met. Simultaneously, parents described barriers to accessing formal and informal support in the community; feeling the need to ‘maintain face’ within their social networks; feeling the privacy of their experience inhibited their capacity to seek support; and simply not knowing where or how to access support.
Resources
The findings of the Compass study have informed the development of a suite of resources to enhance support for bereaved families, the community of supporters and professional carers. The By My Side resources were developed in collaboration with Redkite, a leading source of support for children and young people diagnosed with cancer and their families in Australia.
By My Side: Parents’ voices supporting other bereaved parents
The By My Side resources draw on the voice and experience of parents who have suffered the death of a child from cancer. Parents who participated in the Compass Study were invited to consent to have their quotes shared to enhance support for others in the community who had been touched by the death of a child from cancer. By My Side is now available in the form of a booklet and audio-visual resource.
By My Side shares the experiences, feelings and opinions of bereaved parents - in their own words. Mothers and fathers who participated in the Compass Study speak from the heart about the things only other bereaved parents can truly understand. By My Side also provides insight and gentle guidance for family and friends. The quotes reflect the experiences of parents who participated in the Compass Study and may not be representative of all parents.
By My Side shares the experiences, feelings and opinions of bereaved parents - in their own words. Mothers and fathers who participated in the Compass Study speak from the heart about the things only other bereaved parents can truly understand. By My Side also provides insight and gentle guidance for family and friends. The quotes reflect the experiences of parents who participated in the Compass Study and may not be representative of all parents.
By My Side book
To order a free copy of By My Side, please visit Redkite
By My Side audio-visual resource
'Walking Alongside: sharing the insights of health professionals who regularly care for children whose cancer cannot be cured'
Findings from the Compass study also highlighted the important role of the health care team in supporting parents through their child’s illness, end of life and into bereavement.
In response to these findings, and to complement the By My Side resources, in collaboration with Redkite we developed Walking Alongside, a resource for healthcare professionals who support bereaved families. This video includes stories from healthcare professionals who regularly care for children whose cancer cannot be cured accompanied by the ‘Conversation Starters’ worksheet.
The Walking Alongside video and accompanying ‘Conversation Starters’ worksheet is available at no cost. You can also find the resources via the Redkite website
If you have watched the Walking Alongside video please consider completing this survey to let us know what you thought of it.
In response to these findings, and to complement the By My Side resources, in collaboration with Redkite we developed Walking Alongside, a resource for healthcare professionals who support bereaved families. This video includes stories from healthcare professionals who regularly care for children whose cancer cannot be cured accompanied by the ‘Conversation Starters’ worksheet.
The Walking Alongside video and accompanying ‘Conversation Starters’ worksheet is available at no cost. You can also find the resources via the Redkite website
If you have watched the Walking Alongside video please consider completing this survey to let us know what you thought of it.
Compass Study Team
Contact Dr Leigh Donovan Post-doctoral research fellow, UNSW Psychosocial Consultant, Collaboraide [email protected] |