Family and Caregiver Training

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The following course content

Introduction   

When hearing the phrase caregivers, what comes to mind? If you are a nurse, you’ve heard about caregiving and caregivers. Nurses are often frontline educators for caregivers, especially since caregivers come in many different roles and perform several varied tasks. Whether you are discharging a pediatric cancer patient with their parents or providing guidance to a home health aide about caring for a patient with Alzheimer’s, family and caregiver education is essential. 

Appropriate caregiver education is essential for patient health, for patient and caregiver dynamics, and for health care overall. Presently, patients seek guidance and information on various health topics from nurses, including family and caregiver education for their loved ones. The information in this course will serve as a valuable resource for nurses of all specialties, education levels, and backgrounds to learn more about family and caregiver education. 

Defining Caregivers 

Caregiving is defined as taking care of someone when they have a condition that prohibits them from doing activities on their own, such as using the bathroom or eating. Caregiving can be done by family members, community members, friends, healthcare workers, and home health aides. 

Caregiver prevalence in the United States is highly variable given that there are caregivers in various aspects of society and households. Studies suggest that approximately 20% of adults in the United States are caregivers, often for partners who are unable to function independently, for chronically ill children, or elderly parents. Some studies also look at the role of children in caring for ill parents. In this course, the focus will be on family and caregiver training given the importance of nurses in patient education (1,2,3,4).  

In the United States, most caregivers are women, who have not formally trained in caregiving (unless they are health care workers) and have unrelated formal education. Many caregivers use technology to help with caregiving, such as using applications on their phones to help with time management, monitor medication administration, or create appointments for people using an online patient portal.  

Caregivers themselves have reported to be in poor health, with some estimates showing that a third of all caregivers report poor health. Given the rise of the aging population in the United States and the demand for caregivers, family, and caregiver training and education is essential for proper care for the aging population (1,4). 

What Are Caregiver Roles and Tasks?  

Caregiver roles and tasks can significantly vary depending on the extent of caregiving. For some caregivers, they translate materials from another language to English to help family members understand health conditions and procedures. For some caregivers, they help people go to the bathroom. Some common caregiver roles include translator, chef, personal care assistant, emotional support guide, cleaning assistant, and more.  

Some common caregiving tasks include: 

1. Helping someone urinate and defecate. 
2. Helping someone take a shower. 
3. Helping someone take their medications. 
4. Helping someone schedule their medical appointments. 
5. Transporting someone to their medical appointments. 
6. Helping someone obtain their prescription refills and picking up medications at the pharmacy. 
7. Troubleshooting technology for virtual healthcare services. 
8. Cooking for someone. 
9. Cleaning for someone. 
10. Helping someone pay their bills and organize their finances. 
11. Providing emotional support during medical appointments and procedures. 
12. Translating documents and information from another language to English.  

(1,2,3,4) 

If caregivers are not properly educated, that can lead to poor patient care outcomes, increased caregiver stress and strain, medication mismanagement, unsuccessful patient health management outcomes, and increased financial strain on caregivers and patients. Proper education for family and caregivers is essential to make sure everyone is adequately aware of how to care for patients and also take care of themselves appropriately (1).  

Defining Caregiver Responsibilities 

Caregivers are located all over the United States. From rural counties to major urban areas, from apartments to residential homes, and all walks of life, caregiving is everywhere. While mainstream depictions of caregiving often occur in hospitals and other in-patient settings, several caregivers perform caregiving tasks in outpatient settings. Caregiving is performed nonstop in America, where the extent of caregiving can vary depending on the severity of the patient’s caregiving needs, patient’s location, patient preference, cost, and more (1,2,3). 

While caregiving health care workers, such as home health aides, often have formal training in caregiving, non-clinical caregivers often have little to no health care training. Some caregivers take formal caregiving courses through local healthcare institutions, public health departments, online learning platforms, or home care institutions. That said, there are no formalized clinical criteria for caregivers outside of the healthcare setting, making non-medically trained caregivers an important group of people for patient education (1).  

What Is the Average Cost for Caregivers? 

Cost for caregivers can significantly vary depending on the type of caregiving, extent of caregiving, insurance, patient characteristics, and other factors. Cost is among a leading reason why many patients cannot have professionally trained caregivers outside of their family. If cost is a concern for your patient or caregivers, consider reaching out to your patient care teams to find cost-effective solutions for your patients. It is also important to note that the majority of caregiving performed by family members and community members is not compensated, which can lead to further caregiver financial strain, stress, and burnout (1,2).  

What Are Options for Caregivers? 

There are several options for caregivers in terms of learning more about caregiving, performing caregiving, and managing stress while caregiving. Caregiving is often viewed as a part of patient care behind the scenes that does not have extensive research or protocols for. That said, it is an essential part of patient care to have caregivers who can provide care for someone when this patient is not able to care for themselves. Consider various teaching strategies and methods for educating families and caregivers, especially as the demand for caregiving increases with America’s aging population.  

Common Educational Strategies for Caregivers   

In-person education for caregivers is one of the most common ways nurses can educate both caregivers and patients on their needs. In-person education can occur in outpatient settings, such as in patient homes, or inpatient settings, such as in hospitals. Specifically, in-person education can include the use of medical equipment, such as syringes for medication administration, or the use of cell phones or laptops to access patient medical records.  

Because caregiving can vary significantly depending on the patient care needs, patient condition, caregiver abilities, and more, here are some strategies and tips for successful in-person caregiver and family training: 

1. Provide patient-friendly and family-friendly materials to the patient’s home, including any sample medications that caregivers will administer 
2. Set aside plenty of time for demonstrations, questions and answers, and feedback 
3. Make sure you take the time to explain everything in plain language on a fifth grade reading level, as adult health literacy rates in the United States are on the fifth grade reading level. 
4. Make sure to explain the health condition to the caregivers with images, language, and cultural context. Be sure to take into consideration one’s culture and caregiver dynamics as well.  
5. Be aware of all the patient’s health conditions, such as diabetes or cancer, which can affect caregiving roles and patient healthcare management 
6. Ensure all caregivers are aware of various medical appointments, such as specialist appointments, virtual and in-person appointments, and information on contacting the insurance company and various health care professionals (if applicable) 
7. Center the patient in this education experience and ask the patient for their preferences (if applicable)  
8. Take the time to explain medications and their side effects, any drug-drug interactions, specific medication administration facts 
9. Educate caregivers on home dynamics, such as any specific bathroom needs or dietary restrictions, for the patient 
10. Provide time for the patient and caregiver teach back 
11. Educate caregivers on the importance of taking time to care for themselves to prevent caregiver strain, burnout, and stress. 
12. Recommend caregivers take a specific caregiving class related to patients with a specific health condition, such as a caregiving class for elders with Alzheimer’s or a caregiving class on insulin administration  
13. Suggest that caregivers take a CPR and First Aid course 
14. Have a method of documenting the patient’s progress or decline of their health and overall well-being via a diary, app, or patient portal tracking.  

(1,2,3,4) 

While these are general strategies for in-person caregiving training, it is important to note that healthcare provider professional discretion and patient condition should guide therapy. Consider reviewing a patient’s medication history, clinical presentation, and health history before discussing their specific needs with caregivers. Consider consulting with other health care professionals on the patient’s care team for best caregiving strategies as well.  

What Are Some Strategies for Virtual Education?  

Virtual education for caregivers is one of the most common ways nurses can educate both caregivers and patients on their needs. Virtual education can occur in outpatient settings, such as in patient homes, or inpatient settings, such as in community health centers. Specifically, virtual education has increased significantly in the past decade, especially in the age of COVID-19. Many caregivers might even prefer virtual education sessions given their work schedules, childcare schedules, transit logistics, and other factors. While there is a difference between in-person and virtual education, virtual education can be just as feasible and important for caregivers. Because caregiving can vary significantly depending on the patient’s care needs, patient condition, caregiver abilities, and more. 

Here are strategies and tips for successful virtual caregiver and family training: 

1. Provide patient-friendly and family-friendly materials ahead of the virtual session via electronic documents or mailing sample medications to the caregiver or patient’s address  
2. Set aside plenty of time for demonstrations, questions and answers, and feedback 
3. Set aside plenty of time for troubleshooting technical challenges, such as video or audio connection issues or Internet disconnections  
4. Make sure you take the time to explain everything in plain language on a fifth grade reading level, as adult health literacy rates in the United States are on the fifth grade reading level. 
5. Make sure to explain the health condition to the caregivers with high-resolution images, working videos, language, and cultural context. Be sure to take into consideration one’s culture and caregiver dynamics as well.  
6. Be aware of all the patient’s health conditions, such as diabetes or cancer, which can affect caregiving roles 
7. Ensure all caregivers are aware of various medical appointments, such as specialist appointments, virtual and in-person appointments, and information on contacting the insurance company and various health care professionals (if applicable) 
8. Center the patient in this education experience and ask the patient for their preferences (if applicable)  
9. Take the time to explain medications and their side effects, any drug-drug interactions, specific medication administration facts 
10. Educate caregivers on home dynamics, such as any specific bathroom needs or dietary restrictions, for the patient 
11. Make sure the caregivers are aware of any devices that need maintenance that cannot be completed in person, such as cleaning certain medicine ports, machine filters, and the like 
12. Provide time for the patient and caregiver to teach back and make sure you can see the caregiver’s hands and facial expressions if applicable for medication administration and patient care 
13. Educate caregivers on the importance of taking time to care for themselves to prevent caregiver strain, burnout, and stress. 
14. Recommend caregivers take a specific caregiving class virtually or in person related to patients with the specific health condition, such as a caregiving class for elders with Alzheimer’s or a caregiving class on insulin administration  
15. Suggest that caregivers take a CPR and First Aid course and note that there are several virtual CPR and first aid classes (though these classes, in particular, might be best to be completed in person to ensure competency)  
16. Have a method of documenting the patient’s progress or decline of their health and overall well-being via a diary, app, or patient portal tracking. 

(1,2,3,4) 

While these are general strategies for virtual caregiving training, it is important to note that healthcare provider professional discretion and patient condition should guide therapy. Consider reviewing a patient’s medication history, clinical presentation, and health history before discussing their specific needs with caregivers. Consider consulting with other health care professionals on the patient’s care team for best caregiving strategies as well.  

Given the nature of caregiving, there is no standardized test or method of assessing caregiver’s understanding of their responsibilities. Because caregiving is so specialized to the patient’s needs, depending on their health conditions and caregiving extent, caregiving knowledge can truly vary significantly. As nurses, we need to make sure that caregivers understand the material by the following methods: 

1. Allowing time for patient and caregiver teach back 
2. Monitoring the patient’s health over time to see for any declines in health 
3. Asking the patient how they feel at home 
4. Asking the caregivers if they have any questions about caregiving or the patient’s health 
5. Providing resources on caregiving, the patient’s health conditions, and the patient’s medications 

How Would Family and Caregivers Be Involved in Medication Administration? 

Because there are several routes and several medication options for patients, medication education, including medication administration education, is essential for all family and caregivers involved in the care of any patient. Caregiving can encompass a wide variety of health conditions, including working with several care professionals, such as home health aides, family members, therapists, nurses, surgeons, and more. Making sure everyone is aware of each medication’s administration route is essential. It is important to provide culturally appropriate, evidence-based, and realistic education on medication administration for everyone involved in the care of that patient. Family and caregivers should be aware of the general side effects of all medications administered, any specific medication administration facts (such as taking certain medications with a meal or in the morning), and aware of red flags to report on (1,2,3).   

How Would Caregivers Be Involved in Medical Therapies? 

Because several medications can be taken at home, in addition to medical devices that can be used at home, caregivers can be involved in medical therapy administration, management, and maintenance. For instance, a patient might be taking portable oxygen and need their oxygen tubes primed and fixed regularly. Another patient might need their port-a-cath disinfected regularly. These therapies, while not administering prescribed medications, can be very crucial in the care of patients outside of a health care setting. It is important to provide culturally appropriate, evidence-based, and realistic education on medication administration for everyone involved in the care of that patient. Family and caregivers should be aware of general possible complications from medical therapies and aware of red flags to report on (1,2,3,4). 

Additionally, some other therapies or medical interventions that caregivers and families might be a part of include physical therapy, speech therapy, and psychotherapy. Physical therapy (PT) is the treatment or management of a condition that involves the physical movements of body parts to restore their function and mobility to the best of their capabilities. PT is done by licensed physical therapists in PT offices but can be completed at home as well or virtually. PT can be done a few times a week to a few times a month depending on the severity of the patient’s needs. In general, PT can vary significantly depending on the patient’s condition, patient’s finances, patient preference, health care access, and more (1). 

Speech therapy (ST) is the treatment or management of a condition that involves speech recognition and oral movements to restore their function and mobility to the best of their capabilities. ST is done by licensed speech therapists in ST offices and can sometimes be completed at home or virtually. ST can be done a few times a week to a few times a month depending on the severity of the patient’s needs. In general, ST can vary widely depending on the patient’s condition, patient’s finances, patient preference, health care access, and more (1,2,3).  

Psychotherapy is the treatment or management of mental health conditions and mental health state. Psychotherapy, also commonly known as mental health therapy, can be done by licensed mental health professionals, such as licensed mental health counselors, psychiatrists, mental health nurse practitioners, social workers, and more. Psychotherapy can be done virtually or in person. Psychotherapy can be done weekly, monthly, or as needed depending on the severity of the patient’s needs. Psychotherapy is often a form of therapy that is often the most inclusive of patients and caregivers given that it is a space to talk and process several emotions. Many psychotherapy sessions can also be group or family sessions depending on the skill of the mental health professional (1,2,3). 

Nursing Considerations 

Nurses remain the most trusted profession for a reason, and nurses are often pillars of patient care in several healthcare settings. Patients turn to nurses for guidance, education, and support. While there is no specific guideline for the nurses’ role in providing family and caregiver education for patients, here are some suggestions to provide quality education for caregivers and families. 

• Take a detailed health history and include the caregiver’s input in patient history as well. Often, vital signs and history taking can be complex with a patient who has a caregiver, especially in more complex care cases. Encourage their caregivers to be involved in the vital signs and history-taking process to learn about noticing any abnormalities or medical concerns that warrant medical attention.  

As nurses, we are aware of vital signs and histories, but we are not with patients all the time. Patient and caregiver accounts can provide a good summary of the patient’s health and response to therapy. Ask the patient if they are experiencing symptoms or changes in their lifestyle. If the patient is complaining of symptoms, ask about how long the symptoms have lasted, what treatments have been tried, if these symptoms interfere with their quality of life, and if anything alleviates any of these symptoms. If you feel like a patient’s complaint is not being taken seriously by other healthcare professionals, advocate for that patient to the best of your abilities.  

• Assess safety. If possible, ask the patient how they feel at home and with their caregiver without the caregiver present to assess for any caregiver strain and any violence in the home situation.  

• Review medication history at every encounter. Oftentimes, in busy clinical settings, reviewing health records can be overwhelming, especially for patients with multiple caregivers or healthcare providers. Millions of people take medications for various reasons, and people’s medication histories can look similar over time. Ask each patient about how they are feeling on the medication, if their symptoms are improving, and if there are any changes to the medication history. Ask the caregivers if they are aware of the medications this patient is taking, the dosage, the frequency, and the purpose of these medications. Also, ask the caregivers if they have noticed any changes in the patient’s recovery process while on these medications or with their medical equipment. Ask if either the patient or caregiver has questions about medications or medical equipment.  

• Be willing to answer questions about patient recovery and medication options. Many people do not know about medication side effects, risk factors to be aware of, and lifestyle changes that can influence their health. Be willing to be honest with yourself about your comfort level discussing topics and providing education on various medications, polypharmacy, various therapy recovery options, and various steps involved in comprehensive, coordinated care.    

• Communicate the care plan to other staff involved for continuity of care. For several patients, especially patients with complex caregiving needs, care often involves a team of nurses, specialists, pharmacies, surgeons, caregivers, and more. Ensure that patients’ records are up to date for ease in record sharing and continuity of care. 

Stay up to date on continuing education related to medications and caregiving education, as evidence-based information is always evolving and changing. You can then present your new learnings and findings to other healthcare professionals and educate your patients with the latest information. You can learn more about the latest research on caregiving education by following updates from evidence-based organizations, such as the National Institutes of Health (NIH). You can also share any evidence-based information on the health conditions affecting your patients with caregivers.  

While assessing the patient’s needs is essential, take time to check in on caregivers to assess for caregiver burnout, stress, and strain. If possible, refer caregivers to caregiving training or stress reduction classes. 

How can nurses identify if someone needs more intervention for their caregiving skills?  

Unfortunately, it is not possible to look at someone with the naked eye and determine if they are struggling to be a caregiver, as caregiving looks vastly different in every patient’s case. While some people might have notable caregiving stress symptoms, such as trouble concentrating or fits of despair, the most common symptoms of caregiver stress and the need for further caregiver training for many people vary widely. In addition, nurses can answer questions and concerns regarding the caregiving process for both patients and their caregivers. Nurses can also provide information on patient health updates, therapy options, medication options, and more. Nurses can provide quality care by completing health history, listening to patient’s concerns, addressing caregiver’s concerns, and offering medication and lifestyle management. 

What should caregivers know about caregiving?  

People should know that anyone has the possibility of being dependent on a caregiver and being a caregiver. That said, caregiving is a major part of someone’s life, both as a caregiver and as a patient. Caregiving can affect someone’s finances, health, career, relationship with the patient, relationship with other people, and more.  

Caregivers should be aware of the responsibility associated with caregiving. Nurses should also teach patients and caregivers to advocate for their health to avoid healthcare complications. Here are important tips for patient education in the inpatient or outpatient setting for caregivers.  

• Tell the health care provider of any existing medical conditions or concerns (need to identify risk factors) 

• Tell the health care provider of any existing lifestyle concerns, such as alcohol use, other drug use, sleeping habits, diet, stress levels, or menstrual cycle changes (need to identify lifestyle factors that can influence health conditions, medication use, and therapy interventions) 

• Tell the health care provider if the patient has any changes to their body, such as pain with urination, pain with movement, or increased fatigue (potential systemic complication symptoms) 

• Tell the nurse or health care provider if you notice that the patient is experiencing any pain that increasingly becomes more severe or interferes with your quality of life 

• Keep track of your and the patient’s health, medication use, and health concerns via an app, diary, or journal (self-monitoring for any changes) 

• Tell the health care provider right away if you or the patient are having thoughts of hurting yourself or others (possible increased risk of suicidality with certain health conditions and from caregiver stress) 

• Administer all prescribed medications as indicated and ask questions about medications and possible other treatment options, such as non-pharmacological options or surgeries 

• Tell the health care provider if you notice any changes to the patient when providing medications or on other treatments to manage the patient’s health conditions (potential worsening or improving health situation) 

• Track the patient’s blood pressure and heart rate with an at-home blood pressure cuff, keep track of your readings, and report any changes to the health care provider (self-monitoring for any changes, if applicable) 

Research Findings 

There is extensive publicly available literature on education for caregivers via the National Institutes of Health (NIH) and other evidence-based journals.  

If a caregiver is interested in participating in clinical trial research, they can seek more information on clinical trials from local universities and healthcare organizations. 

Case Study #1 

Sam was a 36-year-old woman working as a teacher. She has a 2-year-old son, Timmy, that has been having some trouble breathing lately, and she takes her son to the pediatrician. The pediatrician states that her son needs further medical evaluation and testing beyond what is provided in the office. The child is referred to the local pediatric hospital for monitoring and next steps for care. Sam calls her husband, and they are both in the pediatric hospital waiting to be seen and hopeful of learning more about their child’s lungs and health. Both parents are concerned about their child’s breathing and want to know if he will be OK.  

The emergency room staff asked Sam and her husband questions about the child’s breathing and performed some tests. After a few days in the hospital, tests indicated that Timmy might have cystic fibrosis. Sam had never heard of this condition before, but her husband, Mark, had heard of it. Mark thinks that one of his uncles in his family had cystic fibrosis, but he does not remember much about him since he passed away when Mark was a young child. Timmy is still being monitored and on medications to help him breathe, but Sam is very concerned about hearing what Mark said. She is concerned about Timmy’s health and wants to cry but does not want Timmy to see her sad. She wonders if Timmy will be in the hospital forever and wants to learn about cystic fibrosis.  

After a week of hospital admittance, monitoring, and discussing with several specialists, Sam and Mark leave with Timmy and have several medical appointments planned. Their insurance also has sent them information on a remote patient nurse navigator who will be conducting a virtual home visit in a few weeks. Sam and Mark both work full-time in retail, do not have any medical training, and live in a rural area where the closest pediatric pulmonologist is a three-hour drive one way.  

Sam and Mark have asked for help from their parents to babysit Timmy and to make the home easier for someone with cystic fibrosis to breathe. A few weeks have passed since the initial diagnosis, and Sam and Mark are ready to meet with the nurse navigator virtually.  

Case Study #2 

Bob is a 52-year-old man working as an accountant who lives a few miles from his 72-year-old mother, Beth. His mom calls him and states that she is feeling a bit sick and wants to know if he can help her with some chores around the house. Bob goes and helps his mom, but he realizes that her home is much messier than expected, and he is a bit confused.  

Bob calls his wife, Linda, and asks Linda for help. Linda is concerned that there is more going on with Beth, and she thinks that Beth should see a doctor. Bob and his mom, Beth, go to her doctor next week, and Beth explains how she has been having some trouble with her memory recently and trouble going to the bathroom. You look over her vital signs, and you see that her blood pressure for today is 120/80, her heart rate is 80 bpm, and she is afebrile. Beth states she’s been having some memory issues over the past few months, but she thinks it’s “just old age.” 

After talking with Beth and Bob, the primary care healthcare provider decides to refer Beth to a neurologist and also monitor her health to see if she is experiencing dementia or other forms of memory loss. The primary care office also did some bloodwork and ordered some imaging to be done as well. Beth is a widow with her only son, Bob, in the area.  

A week later, Beth is having some trouble driving, so she asks Bob to take her to the neurologist, imaging centers, and lab work centers a few weeks later. Bob agrees to take her, but Bob is starting to realize that he is spending as much time taking care of his mom as he is with his wife and two children.  

Upon meeting with the neurologist six weeks after the primary care visit, the neurologist thinks that Beth has mild-stage Alzheimer’s. Bob is very concerned since he is busy with his family and his career. Beth starts to cry because she is not sure how she will live by herself like this.  

After a few days of the neurologist appointment, Beth and Bob go to see another specialist in the area who focuses on Alzheimer’s in older women. Beth explains her situation as a widow living alone and with only one son nearby. Beth’s other two children live out of state but can provide support as needed. The Alzheimer’s specialist refers them to see a nurse navigator in the room next door who typically handles new cases of Alzheimer’s diagnosis. When Beth and Bob arrive in the nurse navigator room, they are seen visibly arguing about Beth’s living situation, Bob’s marriage, and Beth’s health. 

After their altercation at the specialist’s office, Beth and Bob decide to cool off and not speak to each other for a few days. Bob decides that it would be best for his mom to have a home health aide helping her around the house since he is unable to help her as often because of his work schedule, family life, and personal life. Beth does not want a home health aide and would prefer her children to take care of her.  

Bob’s siblings talked to her, and they stated that they are not able to move in with their mom because of their work situations and personal lives in other states. Beth decided to call some home health aide agencies provided by her insurance company. She doesn’t like the idea of being dependent on someone, but she is starting to accept the reality of her situation now. Bob agrees to help her look for home health aides, and they start making a list of home health aide agencies together. The nurse navigator is planning on having a virtual follow-up visit with Beth in a few weeks.  

Conclusion

Caregiving is a complex process for many caregivers, patients, and healthcare workers. Caregiving has no formalized structure, yet millions of adults are predicted to be caregivers at some point in their lives. As nurses, we must be ready to assess and discuss caregiving strategies for various patient needs, especially since many people turn to nurses for guidance.  

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