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Patient and family resources
Patient and family resources

Patient Care

At SickKids
PACT is a consult service, working in partnership with all of the inpatient and outpatient teams at SickKids. We are asked to meet children and their families for many reasons. Many families find our team helpful in providing a ‘sounding board’ for medical decision making,  We use the experience of other families to outline what each particular option might look like and reflect on how your goals and values as a family may help you to know which option is right. We can provide guidance around pain and symptom management to your primary team, and should you choose to have your child die at SickKids, we can provide support around end of life care. We are more than happy to attend family meetings and be present at every step of your journey.

In the Community

PACT has strong relationships with many community resources, such as your local Health and Community Care in your LHIN. Your local LHIN can provide you and your family with the necessary supports to care for your child at home, such as nursing care, hospital beds, commodes etc. Our medical team works in conjunction with community physicians to ensure the best quality of care is in place for your child. We can arrange for a community palliative care physician to care for your child at home, and will be in constant contact with available around to them around the clock to provide guidance and support.

Hospice Support

Emily’s House Children’s Hospice in Toronto provides residential end of life care for children and their families in a home like environment.  Emily’s House is staffed by registered nurses, registered practical nurses and personal support workers, all of whom have experience in and passion for providing care to patients at the end of their lives. PACT provides physicians coverage for end of life patients at Emily’s House.  We work in conjunction with their staff nurses to ensure that your child has and family receive the best care possible in a hospice setting.

 

Below we will share some helpful resources for families of children who have life-limited conditions or would benefit from palliative care supports. 

Courageous Parents Network- Courageous Parents Network is a destination created by families, for families, to support and strengthen them as they care for very sick children. Here you will find wisdom from fellow parents who understand, as well as resources developed by experts to help you cope and get through each moment.

Holland Bloorview Care for the Caregiver Page- While it is the role of all parents to take care of their children, the parents of kids with special needs face extra challenges and requirements. Our role goes beyond parenting – we are caregivers to our kids.

It is important to acknowledge these extra demands, as caregivers often prioritize their children’s needs before their own. Unless we take active steps toward self-care, we run the risk of burning out. The health of the caregiver directly impacts the child they are caring for.

But what is self-care and how do we achieve it? For some it may be taking care of yourself physically, eating right and exercising. For others, finding ways to deal with the higher level of on-going stress that caregivers experience is critical to maintaining our mental health. Each caregiver must find what’s right for them.