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Paediatric Bereavement – The Experience of Families

Sydney Children's Hospital Network
Project Added:
21 November 2014
Last updated:
15 December 2014

Summary

Bereaved families living across NSW are now able to access improved support in their local community, causing minimal disruption and removing the need to travel to receive adequate support.

Videos and resources have been developed to enhance education for local health providers and professionals. This improves training for clinicians supporting families who have experienced the death of a child. This resource educates health professionals on the experience of grief and loss, improving the service provided to emotionally isolated families.

This resource is available via The Sydney Children’s Hospitals Network (SCHN) website.

This project was a finalist in the Patients as Partners category of the 2014 NSW Health Awards. Download a poster from the 2014 NSW Health Awards.

Aim

To develop an electronic Department of Pain Medicine & Palliative Care (DPMPC) bereavement resource to deliver education to health professionals caring for families across NSW.

Benefits

  • Improved patient and carer/family experience and outcomes.
  • Increased knowledge and understanding of grief through education for healthcare staff.
  • Increased access to specialised bereavement education electronically, promoting access to education and support for all families and health professionals.

Project status

Sustained: The project has been implemented, is sustained in standard business.

Background

Bereaved families can be reluctant to use support services based at the hospital because of the painful memories associated with the environment. The lack of information and education available for health professionals caring for children and their families can increase isolation following the death of a child, which is a risk factor of complicated grief and may result in poorer outcomes in bereavement.

To address this risk an innovative online resource was developed. This resource enables clinicians to access specialist education from their workplace, removing the need to travel for training and enhancing the service provided to families.

Implementation

The DPMPC invited bereaved family members to participate in professionally led filmed interviews, reflecting on their experience of caring for a child with a life limiting illness and into bereavement.

Participants shared information that they had felt was important for health professionals to know. Written information was provided to participants outlining the purpose for the quality improvement project prior to gaining consent.

A criterion was created to exclude vulnerable families. Prior to filming, interview questions and a consent form were sent to participants to help prepare for each interview. Following filming, participants were asked to provide approval of final footage and its access online.

The resource has been promoted throughout the paediatric tertiary hospitals and other health services that support bereaved family members.

This resource is available via The Sydney Children’s Hospitals Network (SCHN) website to health professionals and bereaved family members (including those in rural and remote areas) where access to bereavement support following the death of a child is limited. The education also provides contact details of other bereavement support organisations in the event that further assistance is required for viewers who have accessed this resource.

Results

Surveys have been used to evaluate the bereavement resource. Results show that following viewing, 76% of health professionals identified an increased knowledge about grief and loss using electronic and paper based evaluations.

Online education delivery enhances access to health clinicians external to the paediatric tertiary centre, building capacity in service provision across NSW.

The project demonstrates bereaved family members can provide unique insight and valuable education to enhance service delivery by health professionals across NSW.

Videos have been accessed across Australia and worldwide including Iran, Ireland, Singapore, North America and Ukraine.

Partnerships

  • Fairfield RSL
  • Families and carers

Lessons learnt

Using a collaborative approach with families and appropriate recruitment, consent and facilitation, a valuable resource can be developed using the experience of bereaved families to educate health care professionals in bereavement work.

Bereaved family members provide valuable education to enhance service delivery by health professionals across NSW.

Contact

Natasha Samy
Bereavement Coordinator
Sydney Children’s Hospitals Network (SCHN)
Phone: 02 9845 2617
Email: Natasha.samy@health.nsw.gov.au

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