Caregivers and the Healthcare System. How family caregivers feel about the relationship
Caregivers’ relationship with the healthcare system has long been challenging. Although their role often requires them to help the person they are caring for navigate health systems, they usually find themselves marginalized.
A study published in the journal BMC Geriatrics titled “Caregiving is like on the job training but nobody has the manual”: Canadian caregivers’ perceptions of their roles within the healthcare system” took an in-depth look at this tenuous relationship.
The group of researchers from the University of Toronto, McGill and Princess Margaret Cancer Care Centre interviewed 39 family caregivers about their roles. The people the caregivers looked after had chronic physical conditions.
They initially analyzed the caregiver role along three critical areas: as resources, co-workers and co-clients. However, the caregivers in the study also revealed that their daily responsibilities often aligned with a fourth role, that of care co-ordinator.
In the co-ordinator role, caregivers found they had to oversee coordinating care with providers and a variety of institutions. They became advocates to ensure their loved ones received the type of care they expected.
After the interviews, it was apparent that the caregivers faced challenges and limitations in each of their roles as it related to the healthcare system.
Challenges as a Resource
Regardless of their journey to becoming caregivers, many saw it as a gradual process and a “natural” extension of their relationship with their loved ones.
In keeping with the finding that many caregivers do not identify with the role, many of the study participants were not even aware that the tasks they were performing came under the umbrella of caregiving.
However, eventually, the caregivers realized they were doing more than just pitching in or helping out. But they faced challenges in finding information, being recognized by the healthcare system, and continuing in their role.
Some caregivers also questioned how they would cope in the future if their loved ones needed more complex care. They also experienced doubt about making decisions about medical needs.
Challenges as a “Co-worker”
The “co-worker” role refers to how caregivers see themselves as part of the healthcare team for their care recipients. Some of them felt the relationship was a partnership and that they were quite confident and adept at sharing information about their loved one’s care.
In some cases, caregivers became quite loyal to healthcare members, such as family physicians, who provided excellent care for their loved one.
However, other caregivers did not feel quite so supported in their co-worker role. Some of the key challenges they faced included not being taken seriously by healthcare professionals and being excluded from medical decisions.
Some caregivers even faced negative feedback about their abilities. Others felt they did not receive enough training to provide the best care for their loved ones and that they were being held to unrealistic expectations.
For instance, some felt very unprepared to give injections or to transport their loved ones with severe conditions, such as chronic obstructive pulmonary disease (COPD), to daily appointments.
Challenges as a “Co-client”
As a caregiver, seeing yourself as a “co-client” means recognizing how your role is affecting your own health. It’s vital to help avoid the burnout and disillusionment that can accompany caregiving.
However, the study revealed that many of the caregivers did not see themselves as co-clients. This was the case even though most of them acknowledged how their health was affected, for instance suffering fatigue, stress and suicidal thoughts. Many of them also did not expect assistance with these challenges from members of the team caring for their loved ones.
Some caregivers were reluctant to seek health advice from the team because they didn’t feel they were entitled to it or because they prioritized their loved one’s care needs over their own health. Others cited reasons such as a lack of time or not knowing where to turn to so they could get the help they needed.
Those who did get support from the existing care team said it was vital to their wellbeing. In some cases, that support came in the form of recommendations to pass off care to professional caregivers for a temporary period, also known as respite care.
The care coordinating role includes being information gatherers, the primary organizers, researchers and problem-solvers for a loved one’s health and care needs. Family caregivers have an up-close and personal view of their loved one’s health status, day-to-day activities, and physical or mental abilities.
As such, they can be pivotal to ensuring the best possible outcomes for the person they are caring for, including minimizing discomfort, pain and even dependence. In essence, they can improve the quality of life of the person for whom they are caring. In most cases, that means quality of life over many years, even decades.
However, many caregivers in the study revealed that they were challenged by a fragmented care system, which made it difficult to find solutions for their care recipients.
Others cited challenges such as a “lack of accountability for continuity of care.” They were often left alone to bring together different institutions involved in their loved one’s care and to coordinate transitions and changes to the care needs or regimen. They also struggled with needing more in-depth knowledge of the healthcare system or specific health conditions.
By virtue of their increased caregiving role — and all the responsibilities and accountability that come with that — caregivers have a much more significant role in care management and coordination. Not to mention, they also often have to cope with the financial consequences.
In some cases, primary caregivers may deem that they should take over the care of their loved one, but face resistance from or conflict with the healthcare team or other family members. It’s a contradiction that compromises both the caregiver’s role as a care coordinator and the health and quality of life of the care recipient.
A Way Forward
The senior population in Alberta is expected to grow to more than one million by 2035. The need for effective caregiving will only increase and become more challenging.
Never before has it been more important for the healthcare system to create policies and a culture that respects family caregivers — their role, their input and the effect on their health and quality of life. At every level, caregivers should be seen as an equal first point of contact along with the care recipient.
Equally, family caregivers need to take ownership of demanding — or expecting — to be treated with respect, listened to and also to be consulted with regards to their loved one’s needs. A good first step is recognizing and accepting your role as a caregiver.
SOURCE
BMC Geriatrics: “Caregiving is like on the job training but nobody has the manual”: Canadian caregivers’ perceptions of their roles within the healthcare system https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-021-02354-z
