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National Guidelines Introduced to Support Family Caregivers of Adults with Mental Health Problems

The Mental Health Commission of Canada(MHCC) recently released National Guidelines for a Comprehensive Service System to Support Family Caregivers of Adults with Mental Health Problems and Illnesses. This blog post provides an overview of the Guidelines.

The purpose of the Guidelines is to provide guidance to system planners, policy makers and service providers to assist in the planning and provision of mental health care services and to give a voice to many of the concerns and needs of family caregivers.

The Guidelines begin by acknowledging the often difficult roles of the family member – support person, advocate, and caregiver – and how “inadequate recognition and support for caregivers may generate significant emotional, physical, financial and social burdens”.  The Guidelines are based on findings from focus groups, literature reviews and consultations. They were spearheaded by the MHCC’s Family Caregiver Advisory Committee.

The 62-page document reviews questions such as:

  • Who are family caregivers?
  • What do family caregivers provide?
  • How well have the needs of family caregivers been met?
  • Why support family caregivers?

In addition to reviewing the background and context of the family caregiver, the Guidelinescontain 41 recommendations in 5 different categories:

  1. Integrating Family Support into Mental Health Services (General, Acute Care Services, Community/Ongoing Care)
  2. Training and Support for Mental Health Service Providers
  3. Government and Policy
  4. Intersectoral Partnerships
  5. Public Awareness

The Need for Information

A recurring theme (in approximately one quarter of the recommendations) is the need to make more information available to caregivers, such as:

  • Information relevant to each stage of the mental illness
  • Information about the availability of psycho-education pro­grams
  • Information and tools on personal and financial planning
  • Information in all emergency rooms describing support resources
  • Information related to mental illness in a range of formats that takes into account diversity

The Guidelines convey that many family caregivers feel lost. They don’t know very much about the illnesses their loved ones are experiencing or how to help in the best possible way. Many are desperate for information but feel left in the dark. Some family caregivers feel that amidst privacy concerns, health professionals fail to share even basic information about the illness that would help them provide appropriate care. These recommendations could help health care providers alleviate some of the confusion and stress experienced by family.

The Need for Involvement

The Guidelines do an excellent job of recognizing the important role of family members and the need for them to be involved in an individual’s care. Of course, one of the legal concerns is that there are laws relating to disclosure of personal health information that can limit or even prevent family involvement; at the same time, these very laws can also protect patients from family with poor or misguided intentions. It is a difficult balance that health professionals often struggle to find.

Below sets out some of the Guidelines that recognize the need for greater caregiver involvement. Provided the applicable privacy legislation is abided by, these recommendations appear to be practical suggestions that truly recognize the important role of family caregivers:

  • Require mental health service providers to routinely encourage the involvement of families, while respecting the confidentiality and privacy of the relative living with mental illness
  • Establish protocols in hospitals for a clear process of involving family caregivers in discharge and follow-up care plans, including guidance about relapse, crisis preven­tion, and a recovery plan for both the person with the mental illness and the family caregiver(s)
  • Where a relative chooses not to involve family caregivers, ensure that the reasons are explored, discussed and documented, and that service providers provide general information about the trajectory of the illness, common symptoms and management of symptoms so that the caregiver has the basic information required to support the family member without compromising confidentiality
  • Require service providers to include family caregivers in treatment planning where appropriate
  • Engage families, where applicable, in the discussion around using a Community Treatment Order

The Need for Resources

Another recurring theme in the Guidelines is the underlying need for more funding. Many of the proposed ideas that would create tangible support for caregivers would require significant financial resources in order to become effective, such as the following recommendations:

  • Make expert consultation available to mental health service providers when required
  • Make evidence-based family psycho-education programs that are delivered by skilled facilitators widely availabl
  • Create and assign family peer navigator positions for admission and emergency areas with the role of providing direct guidance and information to family caregiver
  • Designate, and make available at all times, an emergency room-based staff member who can assess the person who may have a mental illness and provide guidance to family caregiver
  • Make access to family caregiver associations available in all communities and ensure that they receive funding that reflects their role as a key source of support for family caregivers
  • Provide a variety of respite options in the community that can be tailored to family caregiver preferences

Family caregivers often feel alone in the arduous task of caregiving and struggle as they begin to learn about the world of mental health and our fragmented system. Creating opportunities for caregivers to connect with professionals and peers would certainly be a helpful addition to our mental health system in Ontario.

The Need for Legislation

One of the recommendations is to develop caregiver recognition legislation in all provinces and territories. The Guidelines say very little about what such legislation would entail. Manitoba was the only Canadian province mentioned as having such legislation already in place; other provinces would likely turn to it as a guide if considering similar action.

We will be monitoring any developments with respect to caregiver legislation in Ontario and providing updates at such time.

We note that even without caregiver recognition legislation, there are already provincial laws in existence that affect the rights and obligations of family caregivers, such as the Mental Health ActSubstitute Decisions ActHealth Care Consent Act and the Personal Health Information Protection Act.

The Need to Address Caregiver Needs

The Guidelines discuss how caregivers experience uncertainty and confusion; how they struggle financially; and how they need support too.

Several recommendations in the Guidelinesfocus on providing care to the caregivers themselves. Some of the recommendations that address caregiver needs are as follows:

  • Develop standards and procedures that include protocols for mental health service providers on reaching out to family caregivers to assess their needs and to offer options for support and care
  • Assist family caregivers by routinely using validated instruments to identify and assess their needs and help them to develop self-care plans based on this assessment
  • Encourage employers to better address caregiver needs by implementing psycho­logical health and safety policies, such as flexible workplace policies, and adopting the National Standard on Psychological Health and Safety in the Workplace

Conclusion

The Guidelines provide a basis for service providers, government, employers and the public to understand the difficult role of the family caregiver and what could make their lives a little easier – this will benefit not only caregivers, but people being cared for and the public at large.

However, the Guidelines are not mandatory. This means that despite the value of the content, they have the potential to become yet another shelved report. We encourage everyone to review and broadly disseminate the recommendations (an official summary of which is available here).

We are hopeful that the Guidelines will become the groundwork for many important policies and procedure in the future.

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