Find out what it’s like to be a family caregiver in Ontario’s health system and discover what you can do as a health provider to meet their needs. Hint: Small acts of family inclusion will go a long way.
How does family inclusion help?
For patients, family participation:
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For families, participating in patient care:
Institute for Patient & Family |
For health providers, partnering with caregivers in patient care:
Dern & Heath |
For the health system:, family caregivers:
- Act as informal case managers or care coordinators
- Assist with system navigation
- Advocate for their ill relative
- Monitor symptoms and support adherence to treatment plans
- Provide housing, transportation and financial assistance
- Maintain records of patient’s medications, treatments & hospitalizations
- Arrange for income assistance
- Increase recovery rates & decrease relapse
- Decrease involvement in the criminal justice system
- The estimated annual value of family caregiver contributions is 12.3 billion dollars per year
How health providers can help
- Be welcoming and supportive of family caregivers
- Get to know the caregivers
- Give the family information and resources to understand the diagnosis and prognosis
- Respect the family as part of the patient care team
- Include the family in patient care and patient discharge planning
- Point out and build on the family’s strengths
- Discuss what recovery means to the family
- Educate the family about ways to support recovery
- Refer the family to a support group or family education course
Orient caregivers to tasks and check expectations
- Take the time to teach family caregivers (at least briefly) how the hospital or service works and who is on your floor, and encourage caregivers to seek this information from other services and units in order to enhance their ability to navigate the health system.
- Remain cognizant of caregiver stress and modulate expectations accordingly.
- Give hope. Avoid the use of terms that convey pessimism and help families remain positive as they work with the patient toward wellness and recovery.
- Be understanding. The level of a caregiver’s involvement in care varies over time in response to the stage of the illness, the level of acuity, and the treatment.
- Check for competency. Caregivers must be able to manage the amount, level, and intensity of care demands.
Obtain patient consent
- Ask the patient for consent to share information with caregivers.
If the patient does not give consent to share information with the family caregiver:
- Explore the reasons with the patient, and keep asking the patient to give consent.
- Try not to ask the patient for consent with a question that requires a yes or no answer: Instead of “Can we share information with your family?” say “Which family member can we share information about your progress with?”
- Be supportive and sensitive to the caregiver’s information needs. Discuss "no consent" with the caregiver and acknowledge the difficulty that this poses for the caregiver.
- Assure the caregiver that their loved one is “OK” and “getting appropriate treatment”.
- Offer the caregiver hope because, “The patient may have a change of mind if we wait a few days and ask again”.
Caregiver referrals providers may consider
Caregivers need adequate resources to assure minimization of risk to the patient. Ward-Griffin & McKeever, 2000; as cited in Reinhard, Given, Petlick & Bemis, 2008 | Linking caregivers to resources throughout the disease trajectory is important because caregivers are often unaware that there are support services available to help them. Reinhard, Given, Petlick & Bemis, 2008 | Families that receive education about mental illness develop coping and problem solving skills that can help to ensure improved patient outcomes. Caring Together: Families as Partners in the Mental Health and Addiction System, 2006 | Interventions aimed at increasing caregiver knowledge of community services and how to access them can increase caregiver competence and reduce depression, essentially empowering the caregiver. Toseland et al., 2004; as cited in Reinhard, Given, Petlick & Bemis, 2008 |
EXPLORE Local resources for caregivers
Health provider resources
These resources were hand-picked by health providers and family caregivers in our local addiction and mental health system who felt this material would be of the most immediate value to you.
Calendar of events for family caregivers PDF
Quick links to provider resources
- 4th Canadian Mental Health Checkup
- About Ontario’s caregivers
- Are you really ready to talk to families?
- Assessment tools to help families
- Family inclusion for physicians
- Guide for health policy makers
- Meeting family needs
- Health system transformation
- Join Portico
- Kindness in the workplace
- Mental health information sheets
- Motivating substance users with family support
- On-the-job stress and trauma
- Opioid crisis: Be trauma-informed
- Primer: Talking with family caregivers
- Questions about patient privacy & consent?
- Resources: Family-Centered Care
- Stigma: A course for health providers
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Improving the experience of family caregivers in the addiction and mental health system across Cornwall, Stormont, Dundas, Glengarry and Akwesasne, Ontario.
Project partners: