Effectively Utilizing Family Caregivers

Background:

Families, lifelong caregivers committed to helping their loved ones, are an overburdened and underused resource when it comes to helping an individual with severe mental illness. Given the scarcity of resources, families are often the de facto front-line community care providers. However, families are often left isolated and scrambling to find resources and services. Families face innumerable obstacles when seeking information about their loved one’s illness and treatment plans, and are frequently prevented from obtaining critical medical information about medications, or other key information that could affect the safety of their loved one or family. 

When families are not supported or included in the circle of care, it leaves them unprepared for the intensive support they must provide – resulting in poorer patient outcomes.

At the policy level, health care legislation, procedures, and funding decisions are prepared without meaningful input from families who have direct experience of helping someone with a severe and persistent mental illness. Consequently, inadequate legislation, ineffective practices and inappropriate resourcing continue despite their obvious failures.

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Position:

• Families are key stakeholders in the design and maintenance of healthcare systems that provide for their loved ones, and consequently must have a seat at all tables where decisions are made about services and legislation for individuals suffering from psychotic illnesses.

• Families must be included as key members of a patient’s treatment team and provided the opportunity for input and information about their loved one’s illness and treatment plans.

• Clinicians working with patients who suffer from severe mental illness should receive science-based training and guidance on how to prioritize and maintain therapeutic alliances with families in order to facilitate better treatment outcomes for their patients with severe mental illness.

• Families need easy access to psycho-education about severe mental illnesses.

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Supporting Research:

1. Eassom, E., Giacco, D., Dirik, A., & Priebe, S. (2014). Implementing family involvement in the treatment of patients with psychosis: a systematic review of facilitating and hindering factors.

2.  O’Reilly, R., Gray, J.E., Jung, J. (2015) Sharing Information with Families that Carry the Burden of Care for Relatives with Severe Mental Illness Journal of Ethics in Mental Health Nov 20, 2015 [PDF]