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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:

  • Decreases anxiety, confusion and agitation
  • Reduces cardiovascular complications
  • Makes the patient feel more secure
  • Increases patient satisfaction
  • Increases quality of care and safety

For families, participating in patient care:

  • Increases family satisfaction
  • Decreases family member anxiety
  • Promotes better communication
  • Contributes to better understanding of the patient
  • Allows for more opportunities for patient/family teaching as the family becomes more involved in care

Institute for Patient & Family
Centered Care

For health providers, partnering with caregivers in patient care:

  • Increases patient healthcare compliance
  • Improves understanding of patient needs, symptoms & behaviours
  • Improves therapeutic relationships

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
families feel uninformed

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.

4th Annual Canadian Mental Health Checkup

Mental health remains a challenge for many Canadians and their families. This presentation summarizes the "4th Annual Canadian Mental Health Checkup."

7 easy things you can do

Health providers and family caregivers in Huron-Perth have developed a number of resources to help health professionals start a dialogue with patient families. These “Time to Talk” tools are provided for your free use.

Are you really ready to talk to families?

"Talking to Families about Mental Illness: What Clinicians Need to Know," prepares health providers for conversations with family caregivers. This book focuses is family inclusion in mental health care, so it's totally relevant to clinicians in this field.

Assessment tools to help families

Families that are still intact after years of difficult times, caused by one or more person affected by addiction or mental health, deserve support and encouragement. That's where "Family treasures: Creating strong families" can be used. "Family Treasures is one of those great books that has strong research at its base and can be used [...]

Engaging caregivers in mental health and addiction services

This in-depth report will be valuable to healthcare organizations learning about family caregiver engagement in the design and delivery of health services, with a special focus on the family caregivers in the addiction and mental health system that provide 75 to 80 percent of all client care.

Families as partners

This 2006 report describes the significant effect of mental health and addiction problems on families, identifies the common needs of families in this situation, and provides a blueprint for involving family caregivers as partners in care.

Family inclusion for physicians

Follow these four steps, developed by Canadian physicians in family practice, to "Organizing Your Practice to Support Family Caregivers."

Focus on recovery

Health professionals with an interest in recovery-oriented care will find this guide valuable. Focusing on the needs of the patient can be a particularly effective approach.

Guide for health policy makers

This comprehensive guide helps service providers to assess their systems of support for family caregivers in the Canada's mental health system. The National Guidelines for a Comprehensive Service System to Support Family Caregivers of Adults with Mental Health Problems and Illnesses offers a template for the many types of supports and services that caregivers need at [...]

Handouts on mental health topics

These print-ready information sheets cover the most common conditions as well as more specialized topics like Tic disorders, Problematic video gaming, and Waiting for mental health services.

How do clinicians respond to the needs of families?

Accepting that family caregivers are the backbone of the addiction and mental health system, how do clinicians respond to this evolving landscape? Is a culture shift necessary? Does workflow need to change? "The Great Divide: Clinician, Family Caregiver and Patient Perspectives" has some of the answers.

Join Portico: Canada’s Mental Health & Addictions Network

Portico offers clinical tools and evidence-based materials for health care providers, social service workers and others. Its material may also be of interest to those with lived experience and their family caregivers.

Kindness in the workplace

Kindness is healthcare at its best Kindness contributes to more positive outcomes, and promotes recovery Calms anxiety and fear while inspiring hope Patients being cared for as a whole person, and not just as an illness, allows patients and families to focus on healing Influences how patients/families perceive and trust their health providers Strengthens task-based [...]

Mental health information sheets

Heads-Ed (Ottawa and Regions) offers a collection of plain language information sheets on a wide variety of mental health topics. Examples include ADHD, eating disorders, gambling, LGBT, psychosis to trauma.

Motivating substance users with family support

This acclaimed book, "Motivating Substance Abusers to Enter Treatment: Working with Family Members," presents the Community Reinforcement and Family Training (CRAFT) model of addiction recovery. This time- and cost-effective therapy program is designed to engage family caregivers who want to motivate a loved one to seek help for a substance use problem. The authors' non-confrontational approach [...]

Ontario health providers talk about caregivers

This report, "Stories Shared, Voices Heard: Ontario's Healthcare Providers", describes findings and themes from discussions with front-line health providers in the province. We focused on how providers view both the role of family caregivers and their own role when they engage with family caregivers. In addition we wanted to understand how providers interact with caregivers [...]

Opioid crisis: Be trauma-informed

Canada is in the midst of a serious and growing opioid crisis. This resource for health providers focuses on addressing one facet of the opioid crisis in Canada: Research has shown that the vast majority of individuals who experience problems with opioid misuse and addiction have current or past experiences of trauma and violence. This [...]

Primer: Talking with family caregivers

"100 Ways to Support Recovery" is a great primer for health providers that want to better meet the expectations of patients and their family caregivers with talk and action on recovery from mental illness. Providers will appreciate the overview of foundations and practical material, e.g. recovery through crisis.

Questions about patient privacy & consent?

When the problem is addiction or mental health, questions about the patient’s ability to make healthcare decisions is bound to come up. This is where Ontario’s privacy and consent rules come into play. Unfortunately, the rules can be complicated and open to interpretation but it is well worth the effort to get to know the [...]

Recovery toolkit

With a focus on the topic of recovery, this toolkit will be helpful to patients, their family members and caregivers, and healthcare professionals who are seeking to better engage patients and families in the recovery process.

Resources: Patient- and Family-Centered Care

Patient- and family-centered care leads to better health outcomes, improved patient and family experiences, better clinician and staff satisfaction, and wiser resource allocation. Explore the many provider resources at the Institute for Patient- and Family-Centred Care.

Stigma: A course for health providers

The Mental Health Commission of Canada (MHCC) and the Centre for Addiction and Mental Health (CAMH) have developed this essential course for health providers and front-line clinicians, Understanding Stigma.

Support for on-the-job stress and trauma

Health providers who experience stress or trauma exposure can access TEND Academy's in-person workshops and online courses. Helpful articles, videos and links are also available.

The secret to transforming the addiction and mental health system

"It's Not About Us: The Secret to Transforming the Mental Health and Addiction System" is a guide to improving the client experience in the mental health and addiction system in Canada. This book is based on compelling principles and a real success story about a program in Nova Scotia that transformed its way of providing [...]

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Calendar of events for family caregivers PDF

The language of mental health promotion.

Including families in the health team

Would it surprise you to learn that 60% of all Canadians and 88% of all seniors have poor health literacy? This means the majority of your patients leave their appointments without understanding what they are told. This video offers seven practical strategies for health providers to improve things.

Advice for health providers on inviting a true response from family caregivers.

Explainer: What is mental health recovery?

Share this recovery story with families.

Why is family-centred care essential?

The caregiver role in the health system.

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Embrace grey

Improving the experience of family caregivers in the addiction and mental health system across Cornwall, Stormont, Dundas, Glengarry and Akwesasne, Ontario.

Project partners:

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