Background:
 

In North America more than half of those who suffer from schizophrenia live with their families. In

many cases, family caregivers provide all their ill relative’s essential needs including housing,

nutrition, clothing, and transportation. In addition, due to the inadequacy of community services,

many family caregivers are forced to act as de facto case managers – taking their ill relatives to

clinical appointments, encouraging them to take essential medication, checking for the emergence

of side-effects and monitoring for the return of psychotic symptoms.

 

Society should support families that take on this difficult role. Yet, mental health services and

individual clinicians repeatedly fail to give family caregivers essential information needed to carry

out the arduous task of providing care for an individual suffering from a severe mental illness.

Excluding family from clinical care of their ill relatives is irrational as family involvement in

treatment planning and decision-making is known to improve follow-up with clinical services (Lincoln

2007, Haselden 2019).

 

With a few notable exceptions, the legislation in Canadian provinces and territories permits the

appropriate sharing of information between clinicians and family caregivers. Legislation in all

Canadian jurisdictions:

• Permits the collection of information, including from caregivers, without a patient’s consent if consent cannot be obtained in a timely fashion or when the patient’s account is likely to be inaccurate;

 

• Permits the disclosure of healthcare information without a patient’s consent when

there is a risk of harm to the patient or to others;

 

• Requires that the patient has capacity to consent to the release or withholding of healthcare information, otherwise the decision should be made by the appropriate substitute

decision-maker; and

 

• States that the source of information about a patient should remain confidential in certain

situations.

 

Eassom reported that the main reasons for not providing information to family are clinicians’

ignorance of key aspects of privacy legislation, a management and professional culture that is

unsupportive of family involvement, and a lack of training on how to work with patients in a family

context (Eassom 2014).

 

Position:

• Aspects of legislation that are barriers to the appropriate sharing of information with family

caregivers should be amended.

 

• Mental health clinicians require education about their jurisdiction’s privacy legislation and the importance of sharing information with family caregivers.

 

• Government and regulatory bodies should monitor clinicians’ compliance with the requirements in the Legislation.

References:

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. BMJ

 

1. Open, 4, e006108. https://doi.org/10.1136/bmjopen-2014-006108

 

1. Haselden, M., Corbeil, T., Tang, F., Olfson, M., Dixon, L. B., Essock, S. M., Wall, M. M., Radigan, M., & Frim, E. (2019). Family involvement in psychiatric hospitalizations: Associations with discharge planning and aftercare attendance. Psychiatric Services, 70(10), 860–866. https://doi.org/10.1176/appi.ps.201900028

 

1. Lincoln, T.M., Wilhelm, K., Nestoriuc, Y. (2007). Effectiveness of psychoeducation for relapse symptoms, knowledge, adherence and functioning in psychotic disorders: a meta-analysis. Schizophrenia Research. 96 (1-3), 232–45.

 

1. O’Reilly, R. L., Gray, J. E., & Jung, J. (2015). Sharing information with family who carry the burden of care for relatives with severe mental illness. Journal of Ethics in Mental Health, Nov 20, Open Volume.