Family Care-givers as Essential Partners in Care: Lessons from a Time of Covid-19

Introduction

As the primary care-giver for my son who experienced serious mental health problems in his lifetime, I helped him navigate the mental health system, advocate for services and interact with healthcare providers. This, in addition to understanding his illness, its trajectory and what it might mean for his future prospects. Transitioning from being the parent of a bright young man to being his care-giver and advocate proved to be the greatest challenge of my life. My son went from being upbeat, funny and sociable, full of plans and dreams, to becoming isolated, lost and confused in a mind web of frustration, anxiety, anger and paranoia. We were both in the dark, not only about the psychological angst that my son experienced, but also about how, where and with whom he could access appropriate health services. As his parent, I wanted to solve the problem. As an emerging adult, my son just wanted the problem to disappear. Yet we worked together to improve his quality of life and, despite his challenges, my son was optimistic about his future. He thought he would ultimately overcome his problems and live his life. He certainly tried his best to attain that goal. One thing was sure, he knew he could depend on me to support him no matter what.

This article discusses the important role of family/informal care-givers, care-givers as essential partners in healthcare, the detrimental impact of Covid-19 on patients, care-givers and healthcare systems, and the role of social work in supporting care-givers through research and training.

Parenting: teenage angst or something else?

My son was a good student. He dropped out of high school just before graduation after struggling for almost two years to maintain his grades and play the sports he loved. He couldn’t concentrate on schoolwork, spent a lot of time in his room, discouraged and unmotivated. His social life took a nosedive as cannabis-smoking ‘friends’ replaced longtime schoolmates. A visit to our family doctor resulted in a prescription for anti-depressants, along with a pep talk about reducing the cannabis, and a brief chat with me about teenage angst.

The next few years saw us jumping through hoops to get help for an elusive mental health problem. From counsellors to private psychologists, addiction and rehab to community clinics, the healthcare professionals my son consulted offered siloed services and ambiguous advice, but no comprehensive plan. I informed myself about addiction, anxiety and depression and how I could support my son. The goal was to help him stay active and involved. Still, there were changes in him I didn’t understand and I had no idea what was coming. It seemed like healthcare professionals had no ideas either.

In 2006, my twenty-one-year-old son moved in with a roommate and started working full time at a local restaurant. He seemed to have turned a corner. I visited regularly, asking the usual parent questions about what he did in his spare time, and future plans. He told me what I wanted to hear. I had doubts about some of the things he said, but I tried to strike a balance between supporting him and steering clear of his new-found independence. However, the reality of what he was living was much different. My son was barely holding himself together, using cannabis and anti-depressants to ward off deepening anxiety and paranoia. When he wasn’t working, he stayed holed up in his room sleeping or watching movies. Even his roommate couldn’t coax him out.

My son experienced increasing difficulty trying to maintain his lifestyle. One evening towards the end of 2007, while I was visiting him, he experienced his first episode of psychosis (FEP). We didn’t know what this was at the time, but it was very distressing for him, and me. I convinced him to go to the mental health hospital. After a few hours he was seen, and then admitted for observation/evaluation. Thus began our journey into the mental health system. I would share that journey with my son as his mom, and care-giver, for the next thirteen years.

From parent to care-giver

Before my son was admitted to hospital, my dealings with healthcare were routine. After my son was referred to a psychiatrist, I realised how little I knew about the mental health system. While I knew the basics about mental health disorders, I did not know anything about my son’s mental health status, except for what he told me. Since my son was an adult, his healthcare team did not share any information with me, citing doctor–patient confidentiality. So, I relied on my ill son’s account of what he thought was, or was not, going well for him.

From 2007 onward, while my son attended sessions with his psychiatrist, I learned about mental health treatment and recovery plans. I accompanied my son to appointments, and with his consent, asked prepared questions to his healthcare team. I informed myself about addiction and rehabilitation programmes, sharing information with my son. After a few attempts, my son successfully completed an in-care six month detox-rehabilitation programme. For the first time in a while he was motivated and excited about life. I helped him find housing, assisted him in getting social assistance and encouraged him to return to work or school. More importantly, we spent time together doing activities, had long talks about everything, often with him envisioning what his future would be. Seeing how important it was for him to be accompanied, I realised helping my son required more hands-on support, so I left my career position and found part-time work locally. My son started volunteer work, but found it difficult to do due to overwhelming social anxiety. So I volunteered too. Whilst we didn’t work together, my son was glad for the support.

In 2012, my son attended the hospital’s first episode psychosis (FEP) programme. The programme coordinator asked parents if we wanted to meet together for support. As a seasoned care-giver with years of lived experience, I volunteered to facilitate these family peer support (FPS) meetings. Bi-weekly meetings quickly became two-hour weekly meetings alternating between English and French. I soon realised this was not a volunteer position as more people joined. Eventually I submitted a successful proposal to fund this FPS work.

As FPS facilitator, I collaborated with mental healthcare workers, researchers and clinicians. Later I participated in healthcare initiatives and scientific research studies that promoted family engagement and FPS in youth mental health. I also contributed to policy, networking, training and mentoring in FPS. Because of my deep involvement as care-giver for my son and almost a decade working as an FPS facilitator, I understand that no matter who young people with mental health problems consider as their family, they depend on us for moral, emotional and often financial support, as well as care, reassurance and the hope that things will get better.

Care-givers: Essential partners in healthcare

Informal care-givers are recognised by healthcare authorities and governments alike as the silent providers of unpaid care (Statistics Canada, 2018). Care-giving benefits the person receiving care, in addition to lowering the economic impact for governments and other organisations that provide care. Whilst informal care-givers may benefit from care-giving in terms of having a sense of well-being from knowing that their family member is being supported, care-giving also has consequences. The impacts of care-giving, also referred to as ‘care-giver burden’ (Hoenig and Hamilton, 1966; Liu et al., 2020), especially in the long term, may result in care-givers experiencing physical and mental health problems, financial hardship, social isolation, lack of respite and lack of self-care (Ntsayagae et al., 2019; Karambelas et al., 2022). Yet involving care-givers in the treatment and care of their loved ones has been demonstrated to improve outcomes for the patient and their families (Karambelas et al., 2022).

As healthcare costs continue to rise worldwide due to an ageing demographic, societal, economic and environmental factors (Dieleman et al., 2017), care-givers are more valuable for patients and healthcare providers alike.

Conversely, care-givers are more aware about what they need to provide care. In recent times, care-givers banded together to be recognised as essential partners in healthcare (Health Excellence Canada, 2020). They made known their needs regarding information about illness, medical training, financial help, respite and peer support, so their family members can receive better care. Government agencies and institutions responded as evidenced through ongoing changing policies and practices (Health Excellence Canada, 2020). As care-givers become integrated in healthcare teams, the stress associated with care-giving is somewhat relieved by the knowledge that ill family members benefit from more integrated care.

Covid-19’s impact on care-givers and care-giving

March 2020 saw the ugly specter of Covid-19 descend upon the world, suddenly consuming healthcare resources across the planet. Government and healthcare authorities re-organised priorities to adequately respond to the mounting viral tsunami (Moynihan et al., 2021). As more people contracted Covid-19 and required hospitalisation, patients already in care were also affected. Many patients became collateral victims of increasing strains on healthcare systems and decreasing availability of healthcare workers to care for them. Healthcare workers were rerouted to care for patients with Covid-19 or were themselves becoming ill. Patients with chronic illness, or in long-term care or in mental healthcare, were often displaced or put into ‘lockdown’ for their own safety. No one escaped the ravages of Covid-19.

So it was with shock and dismay that care-givers experienced the fragility of their ‘recognised place’ in healthcare during the Covid-19 pandemic. Without warning, care-givers were summarily dismissed, turned away from helping their loved ones, seemingly without regard for the potential dire consequences of doing so. This restrictive action continued past the immediate aftermath of Covid-19’s arrival, even as it became apparent that such action was detrimental on many levels. Care-givers were arbitrarily categorised as visitors, barred from caring for ill family members in care, their recently won partnership in healthcare disintegrated (Health Excellence Canada, 2020). The consequences of such actions were dire, often leaving patients to fend for themselves, deprived of physical and emotional care, resulting in deteriorating health and even death.

On a personal level, I immediately felt the impact of patient lockdowns in mental health hospitals. Suddenly, I could no longer see my son who was in care at the time. Over the next three months, I did my best to support my son via telephone and care packages in the mail. Previously I was able to see my son on a regular basis, lending him much needed emotional support, accompanying him on brief outings for physical activity, and receiving important updates from medical staff, all with the objective of maintaining his quality of life. Now, it was almost impossible to speak with a staff member by telephone. This lack of communication would have extremely serious consequences.

After almost a decade of building relationships, navigating systems and services, seeking out resources and filling the gaps in my son’s healthcare, I was barred from providing this essential service of care. In our telephone calls, I could hear in my son’s voice that he wasn’t doing well. I contacted everyone I knew at the hospital to get permission to see him. Finally, I received permission to accompany him outside for an afternoon, almost three months to the day after he entered into care. The day before our scheduled meeting, my thirty-five-year-old son tragically lost his battle to mental illness and the unforgiving impact of Covid-19. My son did not contract Covid-19, rather his unexpected death was a result of the collateral damage wrought by the Covid-19 pandemic. Because of the panic, fear, confusion and lack of communication among health providers in healthcare systems following the onset of the pandemic, I was barred from providing in-person care for my son, no longer able to act as my son’s primary source of emotional, physical and moral support.

Covid-19 lessons and the value of collaboration through social work practice

Covid-19’s global presence has changed our lives irrevocably. What hasn’t changed is caring for others, especially when they have limited capacity to care for themselves. As my son’s primary care-giver, I know that care-giver involvement at all levels of healthcare (Morin et al., 2021) is an essential resource that both patients and healthcare providers rely upon. Without care-givers, health system cracks would become chasms.

Care-givers are more valuable than ever as health systems continue to struggle in a post-Covid world. The number of available healthcare workers has decreased (Statistics Canada, 2022), leaving hospitals and health agencies scrambling to reorganise resources and tasks. Healthcare costs continue to rise as resources become scarce. Yet care-givers step up every time to care for their loved ones as best they can. So, restricting care-givers from providing care that offers the opportunity for greater positive outcomes, quality of life and added value to health systems, without cost, does not benefit anyone.

Healthcare providers must continue to partner with care-givers, tapping into their experiential knowledge and providing them with the support they need. To this end, the role of social work offers the most logical and natural link between healthcare providers and care-givers to foster solid and enduring collaborations (Morin and St-Onge, 2016). Social work practices live in the community close to patients and care-givers. Social workers act as mediators among patients, care-givers and healthcare providers, creating and maintaining meaningful lines of communication (Morin, 2015; Morin and St-Onge, 2019). Social workers recognise the valuable contributions of care-givers as essential partners in healthcare, understanding that social work can help to incorporate these qualities into healthcare through research and training.

One of Covid-19’s lessons (Healthcare Excellence Canada, 2020) has been to show us that we can build a new framework that supports patients, care-givers and healthcare systems, but we must do it together (Morin et al., 2023). Care-giver involvement in healthcare is an important and necessary step to providing safety, security and care for patients, in times of crisis and in times of certainty (Eckhardt, 2020). Through collaboration, research and training, we can build solid platforms in local communities. However, if we insist on leaving out key participants due to poor planning or bad information, the foundation of informal care-giving will buckle under the weight of ignorance, isolation and exhaustion, depriving us of this essential natural healthcare resource.

Author Biographies

Mary Anne Levasseur’s role as citizen-partner in various research and community projects focused on families is grounded in her long-term experience as care-giver for her son. She works extensively in FPS and with communities of practice in Montréal, Canada. By sharing her experience and knowledge, Mary Anne hopes to contribute to the support of youth and care-givers in mental health.

Marie-Hélène Morin, s.w., PhD, is a social worker and professor in the Department of Psychosociology and Social Work in the University of Québec at Rimouski (UQAR), Québec, Canada. Her research and training activities focus on family intervention and care-givers in the field of mental health.

References