Returning Home — Demonstration Project for Improved Discharge Planning and Continuing Care for Aboriginal Children with Complex Health Needs
Background/ Why Is This Important?
Children with complex care needs generally depend on the provision of technical procedures to meet their daily care needs. With advances in medical science and technology, these procedures, once only undertaken in a hospital setting, can now be provided in the child's home and community. This means that many children with complex care needs can now live a more fulfilling and more normalized life. It also may mean an increased amount of stress and anxiety for parents who may be unprepared for the essential steps needed to manage their child's "ambulatory" condition. These parents often find that they are not well enough supported by community health service providers and other necessary services to be able to offer the level of care their child requires within the home setting.
Transition points from acute care to home are often difficult-for children, parents, hospitals and medical professionals inside the hospital and in the community. It is at these times in a child's care that coordination often breaks down and critical gaps in service appear.
As a result, parents may need to go to the hospital emergency department to find reassurance and support or because the discharge planning has not been sufficient or successful. Illness and hospital re-admissions may result from complications arising from preventable lapses, omissions or errors in discharge planning and continuing care.
In 2009, these gaps in service were identified by the First Nations Health Council, a member of the CHBC steering committee, as a priority focus for collaborative work with the network and formed the early context for the Returning Home demonstration project, serving families living in the central and north Vancouver Island.
What Actions Have Already Been Taken?
Where did this work start?
The issues related to discharge planning for children with continuing care needs leaving acute care and the gaps in continuity of care for those children have a particular reality for Aboriginal families on Vancouver Island as confirmed by attendees at community meeting in Nanaimo at the Snuneymuxew First Nation Longhouse on October 8 & 9, 2009. As a result of service continuity gaps there are sometimes safety risks that can and do sometimes lead to health problems and preventable hospital readmissions. The community members also indicated the project needed to focus on three areas:
- Support to Family Care Givers
- Access to Services
- Teamwork and Service Coordination
The Snuneymuxw First Nation Longhouse meetings focused on why a program is needed and how it could be developed to work with Nanaimo General Hospital's new Child and Youth Ambulatory Care Unit to improve current discharge processes, take advantage of the growing availability of specialized services closer to the child's home environment and more effectively coordinate treatment received at BC Children's Hospital and other specialized tertiary and pediatric care with family and community realities.
Following the Longhouse meeting, CHBC, through partnership with its collaborators, supported the development of the project model. The partnership members agreed to champion, lead, design and evaluate an improved and sustainable model for discharge planning that includes the essential components of successful family centered, culturally aware, continuing community care and support for these children and their families following discharge from hospital.
More specifically, this project has developed, on a demonstration basis, a sustainable model that:
- Improves the current discharge planning processes and continuum of care and the relationship of those processes to other parts of the Health system;
- Contributes to improved health and well-being for those children and youth;
- Responds to the identified issues facing Aboriginal children and youth with complex health needs and their families and communities;
- Leverages the expanding availability of specialized services closer to the child's home particularly those at Nanaimo General Hospital;
- Coordinates efforts more effectively with the child's family and with community agencies
- Has been developed with the participation ownership, input and support of First Nations Health organizations, and the other key health institutions and health professionals whose efforts will be required for the Project's success.
In 2012, the First Nations Health Council, with the project planning committee including CHBC, was successful in its submission for funding to the federal Health Services Integration Fund (HSIF) and received full funding for three years (concluding March 31, 2015) to support the Returning Home demonstration project and its evaluation. This success was an example of CHBC's ability to leverage its support of priority initiatives by increasing opportunities for collaboration and sustainable funding. CHBC was asked to provide stewardship for this grant funding. This grant allowed the project to operationalize the model and recruit a project coordinator based in Nanaimo.
Guided by an executive committee and an expert advisory table, the coordinator launched the communication plan for Returning Home including development of promotional materials such as a video and brochure. The coordinator also worked promoting the Returning Home approach and service to a vast array of providers and stakeholders throughout the Island, at BC Children's Hospital and Sunny Hill Health Centre, GF Strong Rehabilitation Centre, Victoria General Hospital and Nanaimo Regional General Hospital.
A summary of the coordinator's role in the three stages of Returning Home include:
The Returning Home coordinator liaises with hospital staff and families to establish a team lead in the family's home community so that the family continues to receive the support following discharge, and services they need. This link with the family facilitates that their voice and concerns are heard, and to ensure that the care plan in place is suitable and culturally respectful of the family's needs.
Support with Transition
The Returning Home coordinator follows the family through each transition which helps to ease the burden families may feel when making difficult medical decisions. The coordinator shares information between the family and the health care workers which helps to avoid duplication of services. Furthermore, the coordinator works with the family to find the best options and ensures that your child receives the best care as laid out in the discharge plan.
It is likely that a child with complex health care needs will have follow up appointments, tests or consults with specialists. The coordinator will work with the family and team lead to get
information, facilitate coordination of medical supplies if needed, organize education for the family/community around the child's diagnosis if required and identify community supports to assist the family. This comprehensive coordinated approach to care is strength of the Returning Home demonstration project.
Where Are We Now?
Twenty aboriginal families living in the central and north Island with children having complex health care needs are being supported by the project coordinator based at the CHBC sponsored Pediatric Ambulatory Care Unit at Nanaimo Regional General Hospital. The project coordinator works diligently with all partner agencies and organizations to assess and address the challenging needs of these referred families and to provide a culturally-safe experience.
Based on the positive results of the demonstration project evaluation, the First Nations Health Authority (FNHA), in partnership with Island Health have established three Nurse Navigator positions based in First Nations communities on Vancouver Island. The Returning Home Project Steering Committee and FNHA teams are working to transition to the new model, which will be a long term and sustainable solution for providing health and social systems navigation for the families of children with complex care needs.
For more information, please visit the FNHA website.