Over the past few decades, there has been a significant increase in the number of informal caregivers (i.e., people who provide unpaid care for a chronically ill loved one). The difficulties that informal caregivers face have also grown (i.e., increased difficulty to afford quality health care). When it comes to healthcare professionals their priority is always the patient, and the caregiver is often seen as an inconvenience or as a barrier to providing that care to the patient. However, informal caregivers are an important part of the patient’s care and nurses should direct some of their focus to the caregivers as well. An informal caregiver takes on a role that they likely never anticipated and a role that they are usually not mentally, physically, and/or financially prepared for. Because of this, most caregivers experience some type of burnout or strain. The caregiver is usually under immense stress and pressure to care for another person who is facing a chronic illness while also trying to process their loved one’s diagnosis. This literature review focuses on the interventions a nurse could use, and the coping mechanisms he or she could teach to the caregiver to reduce the amount of strain they experience. Ten articles were analyzed to assess the effects of different nursing interventions on caregiver burden. A wide variety of samples and methods were used. The results show that there are many interventions that could be used to decrease the strain and anxiety experienced by the caregiver and to increase the amount of support, which they desperately need. Even though more research is needed on how to assess the caregiver, the research found is an important start in understanding how to also provide care for the patient’s family caregiver.
Introduction
When I started nursing school I was curious to see what I would struggle with, would it be memorizing the drugs, knowing disease processes and their pathology, or would it be getting too emotionally attached to every patient I encountered. Now that I am a senior nursing major I was surprised to learn that the thing I had the most difficulty with was the way the nurses looked at the family and how they treated them as an inconvenience. Ultimately, caring for the patient is the main priority. However, it is also a difficult time for the patient’s family members (i.e., parents, spouses, children, etc.) Thus, caring for those loved ones is also part of the nurse’s role whether it be increasing their comfort by bringing them an extra blanket or providing education by explaining to them what’s going on with their loved one and answering their questions. Over the summer my uncle had a stroke in July and not only was I struggling with seeing the changes in him (i.e., paralysis and change in speech) but I was also concerned about my aunt. At first, she was consumed with worry about her husband and was trying her best to understand what the nurses and doctors were telling her. As the weeks passed, her struggle shifted to the financial strain related to paying for rehabilitation, home care, and the typical household bills, especially with one less income. Watching her try to balance her new role as a caregiver for her husband, working, and raising their children was very challenging for me. Based on my clinical and personal experiences, I decided that I want to look further into what the nurse could do for the family caregivers of the patient. I think that this is valuable to nursing because family caregivers directly impact the care of the patient. I think that if nurses start caring for the patient as well as their loved ones, they will see positive impacts for the whole family. That is why I picked my PICOT question to be “In families where a loved one suffers from a chronic disease/illness, what is the effect of a nurse teaching coping mechanisms on caregiver stress”. I want to see what nurses could be doing differently, and if research shows that a nurse could reduce caregiver stress and burnout.
Methods
The EBSCOhost medical and psychiatric databases were used to identify articles. The key phrases and words used were caregiver stress, caregiver burden, nursing interventions, chronic disease, coping mechanisms, family stress, caregiver stress in stroke patients, and informal caregivers. Initially, articles that were published before 2013 or were in a language other than English were excluded from analysis. Due to the lack of available material related to the topic, the search was expanded to include articles published between 2008 and 2018. Articles that fit these criteria were read thoroughly to determine if the article was valuable to the PICOT question. More specifically, articles were included if the authors explained specific nursing interventions that could be beneficial for family caregivers and the effects of those interventions on the caregiver’s stress level and burnout.
Results
Five of the articles analyzed utilized a quantitative, cross-sectional research design (Coluccia, Ferretti, Fagiolini, & Pozza, 2017; Lethin et al., 2016; Merckaert et al, 2013; Montero-Marin, Prado-Abril, Demarzo, Gascon, & García-Campayo, 2014; Irwin, Dudley, Northouse, Berry, & Mallory, 2018). Coluccia and colleagues (2017) asked 503 informal caregivers in Italy to complete the Health Services and Caregiver Experience questionnaire (HSCE) to determine the level of strain the family caregivers are experiencing. Caregivers also completed the Family Strain Questionnaire -Short Form and the Coping Orientation to Problems Experience – New Italian Version. Results indicated that male caregivers experience less strain than female caregivers, and that parents and siblings experience more strain than other family members (e.g., aunts, nephews, etc.). Furthermore, social support and better problem solving abilities were correlated with a better caregiving experience. Notably, using religion as a coping strategy was not correlated with a better caregiving experience. Another study utilized a mapping system to gain more information about care and service activities for people with dementia and their family caregivers in several European countries, including Estonia, Finland, France, England, Germany, The Netherlands, Spain, and Sweden (Lethin et al., 2016). The authors found that counseling, caregiver support, and education all benefit the family caregiver by positively impacting their mental health. However, the results indicated that while support was initially high, support decreased as the care recipient’s dementia progressed (Lethin et al., 2016). Merckaert and colleagues (2013) assessed informal caregivers of cancer patients’ desire for formal psychological support. Of the 282 patient-caregiver dyads, a higher percentage of those who reported high levels of psychological distress desired formal support (24%) compared to those who reported low levels of psychological distress (18%) (Merckaert et al, 2013).
Another cross-sectional study by Montero-Marin and colleagues (2014) focused on coping mechanisms related to reducing burnout among professionals. The authors asked university employees (N = 429) to complete the Coping Orientation for Problem Experiences. The results indicated that overload was primarily explained by venting of emotions and lack of development was primarily explained by cognitive avoidance (Montero-Marin et al., 2014). The final cross-sectional study analyzed was conducted by Irwin and colleagues (2018) and focused on nurses’ views of interventions for caregiver burden in those who care for a loved one with cancer. The nurses surveyed explained that transportation to care, especially for those who live farther away, is a barrier to care and more education about managing the emotional aspects of care is needed (Irwin et al., 2018). Furthermore, results indicated that nurses have moderate confidence in intervening with family caregivers and actions should be taken to increase this level of confidence (Irwin et al., 2018). Collectively, these five studies show that general support and counseling help reduce the amount of stress that the informal caregiver is experiencing.
Two qualitative studies were also analyzed to determine what interventions a nurse could use to help a family caregiver (Zegwaard, Aartsen, Grypdonck, & Cuijpers, 2015; Gusdal, Josefsson, Thors Adolfsson, & Martin, 2016). Zegwaard and colleagues (2015) explained how the caregiving experience differs depending on the disease that their loved one has and, thus, the support and interventions they need vary as well. In this study they interviewed 21 mental health nurses in The Netherlands and conducted two focus groups which included an additional 17 nurses with the goal being to gain insight on how mental health nurses support the caregivers of older adults. The authors identified three types of caregiver support shown by mental health nurses; the Tolerator, the Preventer, and the Concerner (Zegwaard et al., 2015). The Tolerator is only concerned with the wellbeing of the patient and sees the caregiver as someone who potentially hinders care goals. The Preventer is aware of the importance of the caregiver and, thus, tries to avoid increasing the burden experienced by the caregiver. Lastly, the Concerner is a nurse who directs care to both the patient and the patients loved ones (Zegwaard et al., 2015). Each of these kinds of nurses have a different approach to working with the caregivers. The Tolerator does not directly focus on the caregiver, but indirectly models to the caregiver the appropriate behavior needed to help the patient. The Preventer is problem-oriented and provides the caregiver with advice and solutions for how to best help the patient and reduce their burden as a caregiver. Lastly, the Concerner tries to improve communication between the patient and their caregiver and also listens to the caregiver’s story/needs (Zegwaard et al., 2015). Although these approaches are all different, they can each benefit the caregiver in some way. Another qualitative study was conducted by Gusdal and colleagues (2016) who used focus group interviews for data collection and focused on the importance of providing education and home visits to decrease the caregivers’ worry and to improve care. The authors found that nurses have an important role when it comes to meeting the caregivers needs and providing emotional support (Gusdal et al., 2016). Using telehealth, home visits, and being available to the caregiver was found to reduce unnecessary emergency room visits due to worry and being unsure what to do. Telephone health has been shown to be an effective intervention and provides a sense of security for the caregiver when they’re in a difficult situation and don’t know what to do (Gusdal et al., 2016).
One systematic review conducted by Honea and colleagues (2008) assessed measures and interventions that can be used to reduce caregiver burden in those who are caring for a loved one with cancer. Nurses can assess caregiver burden by looking at the number of hours they spend caregiving, the caregiving tasks the person engages in, and other factors that can help determine the level of burden the caregiver is experiencing (Honea et al., 2008). Some of the interventions that the authors identified as most likely to be effective include psychoeducation (i.e., about the patient’s disease and other information about resources and services available), psychotherapy (i.e., teaching caregivers to challenge negative thoughts and monitor their feelings), support (i.e., teaching problem-solving and coping skills), and multicomponent interventions, which combine the previously mentioned interventions (Honea et al, 2008). The use of these interventions has been found to decrease anxiety and increase knowledge, self-efficacy, and confidence in the caregiving role (Honea et al., 2008). Similar to some of the other articles analyzed, telehealth is also likely to be effective because it allows for the nurses and physicians to directly interact with the patient and caregiver and work together as a team to correct the issue as needed.
Lastly, one longitudinal cohort study conducted by Menon and colleagues (2017) was included. The study focused on the unique caregiver burden experienced by those who care for a loved one who suffered a stroke in terms of their physical and mental health, social support, and other personal problems. The results indicated that 47.5% of caregivers developed physical health problems and 75% reported psychological instability (Menon, Salini, Habeeba, Conjeevaram, & Munisusmitha, 2017). Furthermore, over 50% of the caregivers reported sleep disturbances and a majority of the caregivers (81%) had to leave their work in order to be a caregiver (Menon et al., 2017).
Several of the articles explained that caregiver burden is difficult to measure because it varies based on the loved one’s illness, and because the emotional needs of each caregiver differ significantly. Despite this, some common themes were identified. One is that many caregivers had to decrease their work hours which increased their stress levels and caused a financial burden. Informal caregivers also frequently experience physical health problems due to their caregiving experience. Furthermore, problems related to sleep were also reported by many caregivers. A majority of the articles used survey methods, and most showed that the most beneficial interventions were support, education, problem-solving, telehealth, and psychotherapy. When these interventions were implemented, a majority of the caregivers reported reduced stress levels, less anxiety, and reduced strain.
Discussion
Based on all my findings, I think the question “In families where a loved one suffers from a chronic disease and illness, what is the effect of a nurse teaching coping mechanisms on caregiver stress” was answered. The interventions that could be used are educating the informal caregiver on what to expect in terms of the disease progression their loved one is facing, and what their role as a caregiver will look like. Psychoeducation is an important factor when it comes to reducing the caregiver’s anxiety and helping them feel more confident in their abilities as a caregiver. Providing the caregiver with support, whether it be just listening to them or giving them referrals for therapists and support groups, has been shown to decrease the strain the caregiver is experiencing. One intervention that was frequently mentioned was telehealth, which I was surprised to learn about. Telehealth is a great resource and gives the caregiver peace of mind because they know they have a professional to talk to if they need to. Overall, the implementation of interventions, such as teaching coping mechanisms, was correlated with reduced stress, less anxiety, and decreased caregiver strain and burden.
Though the PICOT question was answered, there are some limitations as well. For instance, in the article by Honea and colleagues (2008), it was unclear whether the results would differ if caregivers were allowed more time to practice skills or if the use of resources was continued after the intervention. Furthermore, the study by Menon and colleagues (2017) had a weakness in that the group of caregivers who had less strain also cared for someone who was more cooperative, which likely contributed to the caregivers experiencing less stress. Many of the articles mentioned a similar limitation, which is that this topic is hard to measure because it is subjective, and people handle stress differently. They mentioned that there are so many possible interventions, and it is difficult to mimic those interventions with every family. Another limitation is that there are many factors that impact the experience of caregiver burden, such as the loved one’s illness and the caregiver’s level of involvement in their loved one’s care. Because people handle this experience differently, the appropriate interventions vary as well. For instance, some people might be less receptive to psychotherapy or may not be interested in utilizing telehealth services. I think that assessing for caregiver stress is something that should being included in everyday nursing, and evidence-based practice would include knowing what to look for, what questions to ask, and how to help that specific loved one. Knowing the most successful interventions is also very important, so that nurses can provide both the patient and their caregivers with the best care. Informal caregivers play a large role in the patients care thus, it is important to also care for the caregiver, in order to best help the patient as well. Knowing how to assess and intervene in caregiver strain is an important preventative measure and will benefit the patient as well as the caregiver.
Conclusion
In terms of future research, it would be helpful to continue to study ways to assess the caregiver and their needs. For instance, signs of caregiver burden that nurses should be aware of as well as tools nurses should be using to assess the needs of the caregiver. I think that nurses should also be using effective communication when talking to the loved ones, knowing how to be sensitive but also direct so that they can get the answers they need. Since the experience of caregiver burden varies from person to person, it is important for nurses to know how to assess each caregiver in order know what intervention may work best for them. I have learned a lot from this research process. One thing I learned is the importance of time management, because it can be time consuming to search through articles and find the ones that best fit with the PICOT question. I also learned research resources, including the use of library databases, which are more effective than using Google. Furthermore, using keywords is something that was new for me this year, and I think that it helped me more easily find articles that were relevant to my topic. Overall, research is something that doesn’t come easy to me, but I learned that breaking it down and really taking it one step at a time makes the process more efficient.