May 03, 2021, By: Carmen Tung
- Given the increasing prevalence of chronic conditions, their associated personal and financial burdens, and the growing expectation that Canadians will become more involved in their health care, self-care is a promising strategy that can significantly improve clinical outcomes for chronically ill patients and help them maintain a good quality of life.
- The Registered Nurses’ Association of Ontario (RNAO) has published a Canadian best practice guideline (BPG) that offers strategies to support chronically ill patients who wish to engage in self-care.
- This article considers how the RNAO BPG can be aligned with current evidence to improve an existing education program aimed to help lung transplant recipients, a subpopulation of chronically ill patients, become successful with self-care.
The impact of chronic diseases on Canadians
According to the Government of Canada (2019), 44 per cent of Canadians over the age of 20 are living with a chronic condition, and this number is expected to continue to rise. Chronic illnesses have been linked to a higher risk of developing depression, anxiety and other conditions that decrease quality of life (Registered Nurses’ Association of Ontario [RNAO], 2010). In Ontario alone, the annual economic burden due to chronic diseases is over C$ billion (Public Health Ontario, 2019).
A shift toward self-care
Given the increasing prevalence of chronic conditions, their associated personal and financial burdens and the growing expectation that Canadians will become more involved in their health care, there has been a shift from the traditional provider-oriented method of care to one that is more patient-centred (RNAO, 2010). A promising approach is self-care, which involves collaboration between patients and their health-care providers, such that patients assume greater responsibility for their own care. According to Riegel, Jaarsma, and Strömberg (2012), self-care has three components: maintenance, monitoring and management. Self-care maintenance includes the actions that preserve physical and emotional health, such as medication adherence. Self-care monitoring involves the recording of parameters that indicate changes in health status, such as vital signs, weight and spirometry. Self-care management requires patients to respond to abnormal changes, such as by following a previously agreed-upon action plan or connecting with a designated health-care provider.
Self-care in the context of lung transplant recipients
My experiences as a lung transplant nurse have shown me that the goal of transplantation is to give patients suffering from a debilitating end-stage condition an opportunity to move to a more acceptable state of health. Unfortunately, this comes with the understanding that the patient will be trading one chronic condition for another: a transplant is essentially a chronic condition that requires commitment to a strict medication regimen, lifelong monitoring and significant lifestyle changes. Fortunately, self-care is a strategy that can significantly improve transplant recipients’ clinical outcomes and help them maintain a good quality of life. When properly executed, self-care has been shown to reduce the risk of complications, such as graft rejection and infection, as well as decrease the rate of hospital readmission (Chu et al., 2020). In addition, self-care can be used to improve a transplant recipient’s sense of well-being. Lundmark, Lennerling, Almgren, and Forsberg (2019) found that approximately 94 per cent of patients continue to experience symptoms such as tremors, breathlessness and decreased libido within the first five years after lung transplantation. However, recipients perceived themselves to have a good quality of life when their symptoms were well managed. As such, successful self-care management can significantly improve the lives of these patients.
When properly executed, self-care has been shown to reduce the risk of complications, such as graft rejection and infection, as well as decrease the rate of hospital readmission
One of the biggest responsibilities for nurses who work in the acute care setting is to create and implement a post-transplantation education program that equips our patients with the skills they need to perform self-care after discharge. To put things into perspective, the typical patient spends two to three weeks on our ward after transplantation. During this time, we provide daily teaching sessions on how to monitor their vital signs, weight, spirometry and blood glucose; manage their complex medication regimen (which involves more than 30 medications); recognize the signs and symptoms of infection and rejection; and correctly respond to abnormal changes in any of these parameters. Understandably, patients and their support persons often feel overwhelmed. Nurses also struggle to balance educating patients with other tasks, and some wonder if the existing education strategies are effective. This is a similar problem faced by many health-care providers who look after chronically ill populations. To address this challenge, this article presents an example of how we can use a BPG and current evidence to re-evaluate and modify our education programs to help chronically ill patients engage in better self-care.
Using the RNAO BPG and current literature to improve our education program: an overview of the RNAO BPG and the 5 A’s conceptual framework
RNAO has published some of the most evidence-based Canadian guidelines on supporting chronically ill patients who wish to engage in self-care, and the recommendations are organized according to the 5 A’s conceptual framework (RNAO, 2010). The “5A’s” represent five non-linear steps: assess, advise, agree, assist and arrange. The following sections follow the 5 A’s framework to demonstrate how RNAO’s BPG can be aligned with current evidence to improve our post-transplantation education program.
The RNAO BPG recommends initial and routine screening for depression (RNAO, 2010). Chu et al. (2020) found that up to 30 per cent of patients experienced symptoms of major depressive disorder within two years of transplantation. When depression is left untreated, it can lead to problems with self-care maintenance, particularly medication non-adherence, which remains one of the biggest risk factors for rehospitalization, graft rejection and death. The patients at our site are screened prior to lung transplantation but not again unless there is a clinical indication. However, we do regularly monitor the serum level of the antirejection drug tacrolimus, which is an established proxy for medication non-adherence (Chu et al., 2020). As such, we can implement this guideline recommendation by using a valid and reliable psychometric scale to routinely screen our patients at post-transplantation clinic visits and upon every readmission. The result of this assessment could then be compared with drug serum levels to confirm whether patients are experiencing medication non-adherence. We can then refer patients to the psychiatry team as needed and collaborate with community pharmacies to provide blister packs until patients are ready to resume full responsibility for managing their medications.
The RNAO BPG recommends that nurses use a combination of strategies and educational approaches to support self-care (RNAO, 2010). After conducting in-depth interviews with 42 adult lung patients at seven French transplant centres, David et al. (2015) found that the recipients wanted to learn not only about topics directly related to self-care (the role of medications, treatment-related risks, signs of rejection and infection) but also about pregnancy, social rights and psychological support. In many cases, patients were discharged with unanswered questions. Similarly, although we try to cater to the needs of each patient, our education program focuses on equipping patients with the skills and resources required to maximize their clinical outcomes. Given the additional factors of time constraints and a lack of training, nurses are often unable to provide education beyond what is available in our teaching package. Based on the findings presented by David et al. (2015), there is merit in conducting a similar study at our site to determine if our patients have other topics they wish to learn about. For example, there might be patients who wish to move beyond using the pencil-and-paper method of tracking their vital signs to using health-care apps to record their data. If this is important to our patients, we should consider the additional factors that affect their ability to engage in self-care, as detailed in Riegel et al. (2012). For example, we could show nurses how to use evidence-based tools to critique apps and equip them with the skills to teach patients how to safely use these technologies. We could assist patients, especially those with lower health literacy, by encouraging them to use certain components within apps to decrease their burden of self-care. Finally, to address the privacy and security issues that deter some patients from using health-care apps, we can take the two-pronged approach of educating patients about the potential risks and advocating for better policies to protect their data.
The RNAO BPG recommends that nurses collaborate with chronically ill patients to set goals, develop action plans and followup on their progress (RNAO, 2010). The purpose of goal setting is to help patients make changes that will improve their clinical outcomes or at least make smaller changes that increase self-efficacy, which may eventually lead to clinically significant changes. Leek et al. (2019) conducted a prospective study on 106 liver transplant recipients to examine the efficacy and feasibility of using a tailored education and goal-setting tool to improve knowledge of chronic kidney disease. They found that two-thirds of the patients were able to articulate their most important goal and were motivated to followup with it after the 15-minute education session. This suggests that targeted education programs with an emphasis on short-term goal setting help patients make positive changes.
Goal setting is not currently part of the lung transplantation education program at our hospital, but it would be a useful component to add to our package. For example, it would be helpful for patients to aim for specific learning goals during their hospitalization, such as mastering the skills involved in monitoring and responding to fluctuations in their blood glucose levels. They could also set goals for after discharge, such as committing to a daily exercise routine. Overall, goal setting can help patients become more involved during the initial post-transplantation period and lead to a sustained commitment to engage in self-care monitoring and management. As with regular depression screening, it would be important to provide our staff with the appropriate education and support to carry out and followup with this intervention.
The RNAO BPG recommends using motivational interviewing strategies to help patients explore and resolve feelings of ambivalence, disclose barriers affecting their ability to engage in self-care, collaborate better with health-care providers and, ultimately, make behavioural changes that improve their health (RNAO, 2010). Erim et al. (2016) conducted a study on 100 liver transplant candidates who had alcohol-related liver disease. They found that the rate of alcohol relapse was significantly lower in patients who attended at least 75 per cent of their behavioural intervention sessions that used motivational interviewing strategies. Although alcohol use is substantially lower in the lung (compared with the liver) transplant population, smoking cessation has been a problem observed at our site. The findings from Erim et al. (2016) suggest that we can implement motivational interviewing strategies to identify barriers to smoking cessation so that we can establish an action plan to help patients abstain post-transplantation. For example, if patients are concerned about the costs associated with using nicotine replacement therapy after discharge, we can consult transplant social workers to determine if these patients qualify for government subsidies. In addition, nurses can use established hospital protocols to initiate treatments while patients are in the hospital and make referrals to community-based motivational interviewing support groups prior to discharge.
The RNAO BPG recommends arranging regular followup visits with chronically ill patients to maximize their ability to engage in self-care (RNAO, 2010). Recent studies point to a future of post-transplantation care that involves a variety of innovative and creative modalities, such as telehealth. For example, Sidhu, Chaparro, Chow, Davies, and Singer (2019) conducted a retrospective study in Toronto in which they compared the percentage of patients with chronic lung allograft dysfunction progression among those seen in-person versus via telehealth. Of the patients who were seen via telehealth, 97 per cent rated telehealth the same as or superior to in-person visits. There was no statistically significant difference in mortality rates between the in-person and telehealth groups.
Goal setting can help patients become more involved during the initial post-transplantation period and lead to a sustained commitment to engage in self-care.
These findings suggest that telehealth followups might be an acceptable alternative to in-person visits for those who live far away from the transplant centre as they would decrease travelling time and costs. To put things into perspective, our program requires patients to live near our site for three months after transplantation because they have to attend the clinic four days per week. For most patients, this means having to rent a separate accommodation, and their support person, who is often the spouse, cannot work during that time. This presents a significant financial burden, and being away from home also means that patients receive less support from their social network. However, if telehealth were a possibility, patients could receive procedures such as X-rays and blood tests at sites closer to home and followup with their health-care providers remotely. Since our centre has been using telephone and web-based followups during the COVID-19 pandemic, we could use this opportunity to conduct a study to assess our patients’ experiences with this mode of care delivery. The results of such a study could be used to assess the feasibility and effectiveness of implementing telehealth followups in the future.
There are several limitations to my recommendations. First, my area of clinical expertise is predominantly in lung transplantation, and there might be nuances specific to other chronically ill populations that I have not taken into consideration. Moreover, my suggestions are appropriate for the patients at our site, who generally receive two to three weeks of education prior to discharge. This time window for education may not be possible for some populations. Finally, although five primary studies were considered in this article, further integration of empirical literature, systematic reviews and clinical practice guidelines could help create a more holistic picture.
Self-care will become increasingly important as more individuals are diagnosed with chronic diseases in the coming years. In this article, I used my patient population and post-transplantation education program to demonstrate how nurses can use a rigorous BPG and the current literature to re-evaluate existing education strategies and modify them to better support chronically ill patients who wish to engage in self-care. Based on my analysis, I proposed five recommendations: implementing routine depression screening and comparing the results to drug serum levels to assess for medication non-adherence; identifying and addressing additional learning topics; collaborating with patients to develop short-term goals and; employing motivational interviewing strategies to help patients make lasting behavioural changes and using telehealth to provide followup care. Although these strategies might not be applicable to every chronically ill population, I hope other health-care providers can embark on the process I used to arrive at these recommendations to develop strategies that will benefit their own patients.
Chu, M. C., Smith, P. J., Reynolds, J. M., Palmer, S. M., Snyder, L. D., Gray, A. L., & Blumenthal, J. A. (2020). Depression, immunosuppressant levels, and clinical outcomes in postlung transplant recipients. The International Journal of Psychiatry in Medicine, 55(6), 421-436. doi:10.1177/0091217420906637
David, V., Feldman, D., Danner-Boucher, I., Le Rhun, A. Guyomarch, B., Ravilly, S., & Marchand, C. (2015). Identifying the educational needs of lung transplant recipients with cystic fibrosis. Progress in Transplantation, 25(1), 18-25. doi:10.7182/pit2015526
Erim, Y., Böttcher, M., Schieber, K., Lindner, M., Klein, C., Paul, A., . . . Helander, A. (2016). Feasibility and acceptability of an alcohol addiction therapy integrated in a transplant center for patients awaiting liver transplantation. Alcohol and Alcoholism, 51(1), 40-46. doi:10.1093/alcalc/agv075
Government of Canada. (2019). Prevalence of chronic diseases among Canadian adults. Retrieved from https://www.canada.ca/en/public-health/services/chronic-diseases/prevalence-canadian-adults-infographic-2019.html
Leek, R. B., Park, J. M., Koerschner, C., Mawby, J., Sonnenday, C. J., Wright Nunes, J. A., & Sharma, P. (2019). Novel educational and goal-setting tool to improve knowledge of chronic kidney disease among liver transplant recipients: A pilot study. PLOS ONE, 14(7), e0219856. doi:10.1371/journal.pone.0219856
Lundmark, M., Lennerling, A., Almgren, M., & Forsberg, A. (2019). Recovery, symptoms, and well‐being one to five years after lung transplantation – A multi‐centre study. Scandinavian Journal of Caring Sciences, 33(1), 176-184. doi:10.1111/scs.12618
Public Health Ontario. (2019, July). The burden of chronic disease in Ontario: Key estimates to support efforts in prevention. Retrieved from https://www.publichealthontario.ca/-/media/documents/c/2019/cdburden-report.pdf?la=en
Registered Nurses’ Association of Ontario (RNAO). (2010, September). Strategies to support self-management in chronic conditions: Collaboration with clients. Toronto: Author.
Riegel, B., Jaarsma, T., & Strömberg, A. (2012). A middle-range theory of self-care of chronic illness. Advances in Nursing Science, 35(3), 194-204. doi:10.1097/ANS.0b013e318261b1ba
Sidhu, A., Chaparro, C., Chow, C.-W., Davies, M., & Singer, L. G. (2019). Outcomes of telehealth care for lung transplant recipients. Clinical Transplantation, 33(6), e13580. doi:10.1111/ctr.13580
Carmen Tung, RN, MN, works as a thoracics nurse at Vancouver General Hospital in B.C. She received her master’s in nursing education from the University of Victoria in 2020.