Caregiver Strain and Burden: How Nurses Can Provide Support

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Introduction

According to a study by the Centers for Disease Control and Prevention (CDC), 1 in 4 baby boomers have become caregivers. In addition, data collected from 2015-2017 revealed that approximately 1 in 3 adult caregivers, who were 45 years and older, provided 20 or more hours per week of care to their family member or loved one (2).  

The need for caregiving is increasing and with this are the rates of caregiver strain and burnout. Thus, nurses and caregivers must understand the signs of caregiver strain, its positive and negative impacts, and prevention strategies to maintain a caregiver’s health and well-being.  

The purpose of this course is to equip learners with the knowledge to understand the impacts of caregiver strain and burnout. The information in this course will also serve as a valuable resource for detecting signs of caregiver burnout, prevention strategies, and available resources.

Definitions 

This section will cover the definitions related to caregiving. 

A caregiver is a person who helps care for or provides direct care for a person’s needs, which can be either physical, emotional, social, or psychological. They can be paid, like healthcare professionals and hired employees, or can be unpaid, like family members and friends (2). A caregiver can provide short or long-term care based on the person’s needs. Examples of people who may need a caregiver are children, elderly people, people who have chronic illnesses, or disabilities, or who are in hospice care (5).   

An informal caregiver is someone who cares for another person’s needs and who is unpaid. Typically, informal caregivers are family members and friends of the person in need or care recipient (2). 

A care receiver is a person who needs care, which can be physical or psychological. Many times, a care recipient is an individual who has a chronic disease, disability, or terminal illness, like cancer. They are also sometimes called care recipients (9).  

Caregiver strain is when a caregiver feels stressed or overwhelmed in their daily life of caring for others. Stress and strain can be multifaceted, and include physical, emotional, financial, social, and other areas of a person’s well-being. Sometimes caregivers can find it difficult to manage their roles for both short and long periods of time (7). 

Caregiver burden is similar to caregiver strain, it’s the stress perceived by a caregiver due to their situation. It’s often multifaceted and leads to feeling the negative impacts and consequences of caring for a loved one over time (7).

Importance of Caregiving 

Caregivers are essential to a person in need. Whether it be a person with a disability or an elderly person with a terminal illness, they can provide basic care and activities of daily living. Some examples of activities of daily living are bathing, dressing, eating, and mobility. Caregivers can also help by paying bills, running errands, or transporting the person to and from their healthcare and other scheduled appointments (2).  

Caregivers are also important because they usually trust the individual caring for them, giving them peace of mind. Oftentimes caregivers and the care recipient develop a trusting relationship and the person views the caregiver as a companion (12). Additionally, some people only need minor assistance, and a caregiver can help maintain a large portion of their independence at their home without living in an assisted living facility (10).

Cancer Diagnosis Effect on Family Dynamics 

A diagnosis of cancer can initially affect a person’s mental health and well-being and it can also affect several aspects of the family dynamics. It’s not just limited to emotional and physical support but can also be financial. The items listed are not just limited to a person with a cancer diagnosis but also cover families where there is a caregiver and care receiver, like individuals with disabilities or chronic diseases.  

Emotional Adjustments 

A cancer diagnosis can lead to feelings of uncertainty and fear for anyone, especially for the person receiving the diagnosis. Family members and friends will need to emotionally support that person and look out for their psychological and mental well-being (11). Anyone or any family with a new diagnosis will undergo emotional adjustments to adapt. 

Roles and Responsibilities 

Depending on the stage, complexity, and cancer treatment, the family may have new or evolving roles and responsibilities. They may need to transport the person to chemotherapy appointments and healthcare provider visits or help with household chores and errands (11). This can also be the same for individuals with disabilities, such as cerebral palsy, who need ongoing physical and occupational therapies. 

Finances 

Healthcare costs are increasing, and a cancer diagnosis can add to healthcare expenses. Depending on the type of treatment the individual needs, the cost of care can add up. Even though a person has healthcare insurance, this doesn’t always mean the full costs of medical services are covered. Additionally, if the person elects to undergo experimental medications or participate in research trials, these are not usually covered by health insurance and the individual will need to cover the costs on their own (11).  

Living Situation 

Depending on the type of cancer and treatment, a person may need both short and long-term assistance. If a person with cancer does not live near family members or friends and needs support, then they may need to consider changing their living situation. This oftentimes means moving closer to family or living inside their home to get the help and care they need (11). This is also true for individuals with chronic illnesses, like dementia, who may need to live with a family member for ongoing support and care. 

Daily Activities 

Sometimes it’s hard for a person who’s been diagnosed with cancer to let go of the independence they once had. They may struggle with completing daily activities, like cooking and eating, because of chemotherapy treatments. Sometimes individuals have difficulty asking their friends and family for help, which can add stress to the situation (11).

Positive Benefits of Caregiving 

This section will discuss the positive benefits of caregiving for care receivers and caregivers. 

There are many positive benefits of caregiving for the care receiver. First, they often build a strong bond with the caregiver, which can cross over generations. For example, a grandparent may develop a stronger relationship with their grandchild, who is their primary caregiver.  

A caregiver also helps to reduce the need for additional institutional or healthcare support and services. For instance, a care receiver may only need help with cooking and cleaning and might need to live in an assisted living facility if they don’t have a caregiver nearby to help. Instead, the caregiver can help with these small activities, thus allowing the care receiver to keep a sense of independence (9). 

Caregivers experience many positive benefits of being a caregiver. They may have a better understanding of the person’s needs and the illness or medical condition if they have one. Caregivers also feel a sense of personal growth and role satisfaction when caring for others. They experience an increased awareness of their own self-care and pay closer attention to their own health. 

Caregivers also report having a closer relationship with the person they are helping and often have positive interactions. They also have improved empathy towards other caregivers and care recipients. Oftentimes they befriend other caregivers to share their knowledge, stories, and experiences (14). 

Negative Health Impacts of Caregiving 

This section will discuss the negative impacts of caregiving for care receivers and caregivers. 

Although caregiving can be beneficial for a care recipient, there are also sometimes negative impacts. Sometimes care receivers experience symptoms of depression or anxiety because they can no longer care for themselves on their own and lack a sense of independence (4). In addition, if a caregiver starts to experience burnout, they may take their feelings out on the care recipient, which sometimes leads to abusive behavior (1). 

Being a caregiver, especially for long periods of time, can begin to have negative impacts on a person. Caregivers can begin to experience increased stress, lack of sleep, and burnout (7). In addition, many caregivers state that they have difficulty maintaining a good work-life balance. This can be related to their job demands in addition to their family or caregiver role demands. They oftentimes feel socially isolated because their free time is spent taking care of their loved ones (1).  

A survey by the Centers for Disease Control and Prevention from 2015-2017, found that 14.5% of caregivers that were aged 45 years and older said their mental health was not good within the past 30 days (2). 

Caregivers may also feel the financial burden of needing to support their loved ones and cover their costs for care and other items (7). Additionally, caregiving can start to take a physical toll on a caregiver’s physical health. In a survey conducted by the Centers for Disease Control and Prevention in 2015-2017, 17.6% of caregivers who were 45 years and older reported that their physical health was not good within the last 30 days (2). Another study found that caregivers are at higher risk for developing health problems like hypertension, burnout, depression, and other health problems (13). Therefore, the multifaceted aspects of caregiving for caregivers can ultimately lead to caregiver strain and burnout. 

Strategies for Preventing Caregiver Strain/Burnout 

This section will review the signs of caregiver strain and burnout along with prevention strategies. 

Nurses, family members, and friends need to understand the signs of caregiver burnout in order to provide the proper support the caregiver needs. The caregiver may appear physically or mentally exhausted. They may neglect their own physical appearance or mental health.  

Caregivers may experience increased stress, fatigue, or lack of sleep due to worrying about their loved ones (7).  Also, a caregiver may mention they feel isolated or don’t have time for social interactions and friends (1). They may also start to have physical and mental health problems, like anxiety or depression (13). Nurses and other healthcare professionals should be able to recognize these symptoms, and sometimes they only seem minor. 

Caregivers and nurses should understand and implement strategies to prevent caregiver burnout and strain whenever possible. Exercise and physical activity can help to prevent caregiver strain and promote well-being. Some examples include practicing yoga, walking in the neighborhood, or riding a bike. Research also shows that exercising with the care recipient can improve both the caregiver's and care recipient's physical and mental health (3).  

Since caregivers oftentimes don’t put their physical and mental well-being before the care recipients, they should strive to promote self-care practices to reduce their stress and burnout (6). Examples of self-care activities are reading a book, taking a bath, journaling, or getting a massage. Additionally, caregivers should strive to have social interactions with their family members and friends. Nurses can provide resources to caregivers for social and mental health support, like suggesting a peer support group or referral to a mental health counselor (1).

Caregiver Training 

This section will discuss the training and community resources available for nurses and caregivers. 

Nurses have measurement tools they can use to screen caregivers for strain and burnout, such as the Zarit Burden Interview or Caregiver Reaction Assessment Scale. With both screening tools, the nurse or healthcare professional asks the caregiver a series of questions and the caregiver reports their answers on a measurement scale. The exact screening measurement tool for nurses to utilize is often outlined by their healthcare organization (7). 

Many healthcare organizations, including home health, require nurses, certified nursing assistants, and other healthcare professionals to take specialized training in detecting caregiver burnout and strain. This can be using screening tools or observing behaviors and interactions with caregivers. During the training, they will review available community resources, support, and referral programs for caregivers. Nurses and healthcare professionals should be knowledgeable and seek additional guidance, if necessary, about the community resources available for caregiver support. 

For a person who’s new to caregiving, it can be quite overwhelming. Thoughts of uncertainty and the lack of knowledge about how to care for another person can be unsettling. However, there are usually many in-person caregiver training programs available, depending on the caregiver’s location. These programs often cover important topics like emergencies, personal hygiene, and infection prevention and control. They also may discuss medication administration, emotional support, and preparing meals and feeding techniques. If there are not any nearby in-person training programs, there are also plenty of online programs and resources.  

Additionally, community support groups are a great resource for caregivers to learn more about the care recipient’s illness or connect with other caregivers.

Resources and Support 

Nurses should be knowledgeable about their healthcare organizations' resources for caregivers. They may suggest respite care, which is a specific service that provides a chance for caregivers to take a temporary break from their caregiving responsibilities (8). Additional community resources are support or educational groups. If the nurse is not aware of community resources, they can refer the caregiver or care receiver to a case manager. A case manager is a great resource and can help the caregiver coordinate the care receiver’s care and provide a variety of helpful materials.  

Caregivers should seek support and community resources whenever necessary. They can ask a healthcare professional during a visit to any healthcare organization. There are also many resources available online, like online forums or groups, where caregivers can connect with other caregivers. Many communities provide free in-person or online support groups and workshops for caregivers as well.

Conclusion

Caregiving can have a positive impact on the lives of the care recipient and caregiver. However, it can also have a negative impact and lead to caregiver strain, burden, and burnout. Therefore, nurses and healthcare professionals need to promote prevention strategies to reduce caregiver burnout and provide resources whenever available.

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