May 09, 2022
Informal caregivers to loved ones living with mental illness or addictions have invaluable knowledge regarding the care needs of their persons. Caregivers see firsthand the impact a mental health or addiction challenge has on their loved ones, and can be an important bridge between their persons, the healthcare system, and researchers. To continue to improve our mental health and addictions healthcare system and body of research, advocacy and input from caregivers is vital. A patient advocate can contribute to change in three main ways:
Improve Health Outcomes
Caregivers have knowledge and experience providing care to their loved ones that can add value to the care team in understanding the nuances and details of the patient’s illness. Many caregivers live in the same household as their ill family member and witness the day-to-day struggles their person experiences as a result of their illness. This insight is challenging to grasp from the short interactions healthcare providers have with the patient. The caregiver's observations can provide the healthcare provider with the data and evidence needed to provide better care that is appropriate to the needs of the patient. Given the unpredictable nature of mental illness, the healthcare team can gain a deeper understanding of the client’s care needs beyond the point-in-time interaction with the patient. Involving the caregiver (with the patient’s permission) as a valued member of the care team can lead to better health outcomes for the client through integrated, quality care.
Provide Inside Knowledge
Caregivers can contribute to the research team as knowledge users. Researchers and caregivers can have deeper discussions that are rich in substance and perspective. Caregivers might have valuable insights on how to reach study participants, especially when these are invisible or might be unwilling to participate due to stigma. Knowledge users can also provide inside information during the data analysis phase of a research project, leading to better interpretation and understanding of the data. During the knowledge dissemination phase, knowledge users might share ideas on reaching decision makers and front line professionals beyond publication in research journals. This provides for a much more practical approach to sharing research findings that could lead to change.
Add The 'Human' Element
When decisions regarding programming, services and funding are made, data is oftentimes the most important criteria. While data is important, it sometimes does not provide for a complete picture of the situation, need, impact etc. Incorporating the ‘human’ element can give meaning to the data being presented. Many times the person living with mental illness might not have the ability to advocate for themselves. Caregivers can be their voice to ensure programs actually meet the needs of clients with mental illness. This can lead to better quality healthcare that in the long run will save money for both in-patient and out-patient services and society at large. Research also shows that poor health outcomes for the person experiencing the illness translates to poor health outcomes for the caregiver. Therefore, accounting for all individuals will give a more accurate indication of what the problems are and how we can fix them.
Related Research/Information:
The ‘Caring for the Caregiver Study’ is a joint research project between Hôtel-Dieu Grace Healthcare, University of Windsor and WE-SPARK Health Institute. It is the brainchild of Clementa Stan, a local caregiver, who saw a need to recognize the important role families, as informal caregivers, play in supporting their loved ones and providing relief to an underfunded mental health and addictions healthcare system. The purpose of this study was to explore the experiences of caregivers who are providing care to a family member living with mental illness or addiction in Windsor-Essex. They also aimed to understand the needs of these caregivers to help them care for their ill family member(s); the information was used to inform the program development for the inaugural Caring for the Caregiver Conference.
About the Expert:
Clementa Stan is a caregiver to a loved one living with mental illness. She is also a long-time member of the Mental Health and Addictions Patient and Family Advisory Council at Hôtel-Dieu Grace Healthcare. Clementa was recently recognized by the University of Windsor as a Mental Health Champion and is part of the team leading the Caring for the Caregiver project.
