Guest Blog Effectively Utilizing Family Caregivers of those with Severe Mental Illnesses


By Kathleen Mochnacki

Background:

The process of deinstitutionalization of severely mentally ill individuals over the past decades has led to families shouldering the psychosocial burden of care and informally adopting the role previously provided by professionals in healthcare services. Fifty to ninety percent of people with mental illness live with their family caregivers. (Chan B. M.Y, O’Brien A-M., 2011). Furthermore the average length of stay in psychiatric hospitals has also dropped about 60%, from approximately 250 days in 1994-1995 to a100 days in 2005-2006 and from 35 days to below 20 days in general hospitals (Canadian Institute of Health Information, 2008). The number of long-stay psychiatric beds in the GTA has dropped from 3857 to 761 beds between 1960 and 1994 (Davis, 2004). By 2001, the Ontario government had closed 500 of the provinces 2900 beds (National Union of Public General Employees, 2004) with no compensating increase in the funds for community-based mental health services (Maxwell,2009).

Fast forward to today, the pressure experienced by the family caregiver has increased with longer wait times for their family member to receive psychiatric care according to a report from the Fraser Institute entitled “Mental Health Care: How is Canada Doing?

https://www.fraserinstitute.org/studies/mental-health-care-how-is-canada-doing?language=en

This report noted that, “From 2003 to 2005, the wait time for seeing a psychiatrist on an urgent basis after GP referral averaged 2.0 weeks, and grew to 2.6 weeks between 2020 and 2022. For non-urgent patients, the wait time averaged 8.0 weeks from 2003 to 2005, and deteriorated to 9.2 weeks between 2020 and 2022. For treatment on a non-urgent basis after an initial consultation, Canadians could expect to wait an average of 10.4 weeks between 2003 and 2005, and an average of 15.5 weeks between 2020 and 2022. Overall, the total wait time from GP referral to treatment by a specialist deteriorated from 18.3 weeks between 2003 and 2005 to 24.7 weeks between 2020 and 2022.”

Despite the onerous responsibility and unique perspective coming from the direct experience of caring for a family member with a severe mental illness, health care legislation, program planning, and funding decisions are generally prepared without the input of families. Consequently, poor patient outcomes, ineffective practices, mismanagement of resources and inadequate legislation continue despite their obvious failures.

Collaboration with families:

This situation would improve if clinicians, service providers and healthcare legislators were willing to work with family caregivers. The advantages of working with families are documented in research (Ong H. S., Fernandez P.A., Lim H. K., 2021). According to these researchers, family engagement involving individuals with mental illness can lead to better health outcomes such as fewer relapses, longer duration between relapses, reduced hospital admissions, shorter inpatient stays, and improved compliance to medication and treatment plans. For individuals with schizophrenia, family engagement has also been shown to lessen residual psychotic and deficit symptoms, as well as helping with earlier detection of warning signs of relapse. Family engagement is associated with better self-reported quality of life and reduced general social impairment. There is evidence that these benefits endure over time if family engagement is actively maintained. Families can also help patients gain access to mental health services during times of crisis. The benefits of family engagement do not merely help the individual with the illness, but extend to the family and caregivers as well. Studies have shown that family engagement helps to ease family burden and family caregiver stress.

Communication with family caregivers:

Privacy laws impede communication between family caregiver and clinician. Individuals who are capable have the right to not have family members involved in their care if that is their wish. There are strategies, however, which would ensure that the family caregiver receives needed information without compromising the privacy rights of the family member with the illness. Where a relative chooses not to involve family caregivers, clinicians need to ensure that the reasons are explored, discussed and documented, and that they 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. (MacCourt P., Family Caregivers Advisory Committee, Mental Health Commission of Canada. 2013).

Clinicians have a duty to their patients’ relatives, although they regularly fail to take available practical and legal steps to ensure that families receive the information that they need. Professional training programs should place greater emphasis on cooperation with family caregivers and clinical services should develop protocols to ensure the involvement of family when appropriate (O’Reilly R.,Gray J.E.,Jung J.,2015). The stress of barriers on families of not being able to provide information or not being taken seriously by clinicians, is considerable. Most Mental Health Acts are silent on this issue so that providing information is not a problem. However, many family caregivers do not know this, so efforts need to be put forth by the clinician to get needed information from the family caregiver.

However, stress also can be caused when information about the patient’s symptoms or behaviour is offered in confidence but then provided to the patient. This can cause significant disruption to the family patient relationship. It is suggested that family caregivers ask the clinician what they will do if information is given to them in confidence. Families need to be told if clinicians keep it confidential, or believe they must tell the patient, and or that they must record it in the file. The file can be released to the patient on request, so it would be important to ask that anything the family caregiver gave them in confidence be redacted.

If the family caregiver believes that privacy legislation is suspected as being fraudulently used as a means of shielding a clinician/service provider from accountability, then the family caregiver may consider filing a complaint with the appropriate Provincial Privacy Commissioner.

The family caregiver’s role in system design

Health care administrators are notorious for tokenizing the input of the family caregiver of those with severe mental illnesses in program design. Often the voices of family caregivers of those with severe mental illnesses are overshadowed by those from the consumer survivor movement who diminish the severity of severe mental illnesses and broadcast their message that “people can and do recover” from the euphemistically termed “mental health challenges”, The fact that governments fund those services provided by the consumer survivor movement gives the impression that their message is legitimate.

Government, and Health Care Administrators have the moral duty to acquire more education about the severity of mental illness, the symptoms such as anosognosia or lack of insight before making funding decisions. Acquiring such knowledge would motivate them to include the input from family caregivers whose unique perspectives allows them to see gaps in services where needs are not being met.

The family caregiver’s role in developing realistic mental health legislation.

Families and their loved ones experience the devastating consequences of our current health legislation which does not accurately reflect the effect of symptoms upon the individual’s behaviour. For example, the symptom of anosognosia where the individual is not aware that he or she has an illness, prevents the individual from accepting life saving treatment.

What is Needed:

  • Families must continue to sound alarm about the inadequacies of the system until the decision makers listen.
  • Families are a key stakeholder 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 severe mental illnesses.
  • Mental Health Clinicians, and community agencies must receive evidence-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 illnesses.
  • Family caregivers must be included in the Circle of Care. Clinicians and community service providers must make efforts to receive important clinical information regarding the individual with the illness from the family caregiver.
  • Government, and Health Care Administrators have the moral duty to acquire more education about the severity of mental illnesses, their prevalence and the symptoms such as anosognosia or lack of awareness before making decisions regarding legislation. Their decisions regarding funding must be guided by the needs of the most severely mentally ill.
  • Clinicians and community service providers have the moral duty to acquire more education about the severity of mental illness, the positive, negative and cognitive symptoms and the prevalence of severe mental illnesses. Symptoms such as anosognosia, and other negative symptoms affect communication and interfere with treatment and service compliance.
  • More knowledge of severe mental illnesses could result in more realistic expectations of the individual’s behaviour which might elicit more empathy. With improved knowledge about severe mental illnesses, communication between clinicians, service providers and family caregivers would improve as would the quality of services.
  • The consumer survivor movement does not represent those families whose loved one suffers from a severe mental illness. This movement proclaims that “people do and can recover”,  While it is important to always have hope, 25% of people with schizophrenia need a strong network to get by. Fifteen percent do not do well and 10% die from suicide.  Governments will continue to underfund programs for those with serious mental illnesses with this continual exposure to false messaging. For more information about schizophrenia, click on the following link:  https://www.merckmanuals.com/en-ca/professional/psychiatric-disorders/schizophrenia-and-related-disorders/schizophrenia

Additional Resources

Lefley, Harriet Family Caregiving in Mental Illness. Sage Publications; 1st edition (Jan. 19 1996)

MacCourt P., Family Caregivers Advisory Committee, Mental Health Commission of Canada. (2013). National Guidelines for a Comprehensive Service System to Support Family Caregivers of Adults with Mental Health Problems and Illnesses. Calgary, AB: Mental Health Commission of Canada. Retrieved from: http://www.mentalhealthcommission.ca © 2013 Mental Health Commission of Canada

Hatta Santoso Ong, Paula Ann Fernandez, Hui Khim Lim. Family engagement as part of managing patients with mental illness in primary care. Singapore Med J. 2021 May; 62(5): 213–219. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8801858/

O’Reilly RL, Gray JE, Jung J. Sharing information with families that carry burden of care for relatives with severe mental illness. Journal of Ethics in Mental Health, 2015



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