Patient Engagement in Self-care

In a nutshell . . .

This page introduces you to the Patient engagement in self-care idea of the Practice Competence and Excellence (PCE) dimension.This idea is the third of the four ideas that make up the PCE critical circle of clinical responsibility.

You'll find that Patient engagement in self-care is both an old and a new idea. Before the rise and influence of scientific medicine this idea was a fact of life and matter of survival for sick, injured or vulnerable people – this was clearly evident in the historical Careful Nursing documents, which is why this is a key idea in Careful Nursing.

But medicine gradually took over primary responsibility for people's health. Only recently have patient-centred and person-centred care been stressed – people being encourages/required to take personal responsibility for their health and health care.

Types of and perspectives on Patent engagement in self-care from nursing research and practice literature are reviewed. Two examples of nurses' recognition and encouragement of patients' need to engage in self-care are presented, one not unusual and the other quite unusual – both highlighting the importance of attentive nurses-patient relationships and excellence in clinical reasoning and decision-making.

Introduction

Patient engagement in self-care is the fifth concept of the Practice Competence and Excellence (PCE) dimension and the third of the four PCE concepts that form the Careful Nursing critical circle of clinical responsibility. Before continuing, please take a minute to review the two figures on the PCE Introduction page above to remind yourself how this concept relates to the other seven PCE concepts (first Figure) and where it fits in the critical circle of clinical responsibility (second Figure).

An old and a new concept

From a Careful Nursing perspective patient engagement in self-care is both an old and a new concept. In the early to mid-19th century patient engagement in self-care was a fact of life for most people; access to medical care was limited and in Ireland and the United Kingdom skilled nursing as a public service had been virtually non-existent for almost 300 years.

As the early to mid-19th century nurses re-formulated skilled nursing, engaging, guiding and supporting sick, injured and vulnerable people to engage is self-care was a primary responsibility. Engaging in self-care to every extent possible was often a matter of survival.

As social, political and economic circumstances improved and hospital-based healthcare services developed, medicine gradually took primary responsibility for people's health. Healthcare became more and more dependent on medicine and hospitals. A recent observation by Weil (2016) that ". . . you could be forgiven for believing that the American health care system was designed without patients in mind" (p. 563) could obtain just as well in some European countries. 

But as Weil (2016) also observes, many healthcare systems are currently doing a rapid about turn; patients' engagement in their care has once again become imperative. Among healthcare professionals, patient-centred or person-centred care are fast becoming bywords to indicate that patients' views and goals for their recovery and health are respected and used to guide their plan of care.

Purpose of patient engagement in self-care

The purpose of patient engagement in self-care is to ensure that sick, injured and vulnerable people are enabled with nurses' guidance and support to actively engage in learning as much as possible about their sickness, injury or vulnerability and the treatments and supports available to them, and are given a central place in making decisions about their care.

Ultimately, patients are supported to achieve independence or relative independence in caring for themselves. Patients' level of engagement in self-care is determined by their desire for engagement and what is actually possible on their part. 

Patient engagement in self-care is interrelated with the other seven concepts of the PCE dimension, but relates particularly to health education, to family, friends and community supportive participation in patients' care, and to relevant nursing diagnoses-outcomes-interventions, all of which will be addressed in following PCE pages. 

Literature related to the concept of engagement in self-care

In the recent past patients' participation in their care has mostly been conceptualized as self-care management. Management means to be in charge of something and maintain control over it, and in relation to self-care this is acceptable as far as it goes. But "engagement" is a richer word with a more comprehensive meaning. It means to be greatly interested in, committed to and meaningfully involved in something over a lengthy period of time.

Government healthcare agencies have come to prefer the term "patient engagement" in their goal to improve the quality and safety of healthcare in hospitals (Agency for Healthcare Research and Quality, 2018). In nursing literature, the terms self-management and patient engagement are increasingly used interchangeably (Tzeng, 2014). 

Patients' engagement in self-care can be categorized in different ways. We will consider a brief, nursing-related sampling of issues that influence patients' engagement is self-care in hospital, during the transition from hospital to home, and in the home. We will also note briefly nursing theoretical perspectives of self-care and nurses perspectives from a practice viewpoint. 

Hospital-based engagement in self-care

Just as patients' discharge planning begins on hospital admission, so too is patients' ability or potential ability to engage in self-care assessed on admission. There are many ways patients can be guided to engage in self-care while in hospital. For example, patients can help monitor their physiological status. See et al., (2014) developed a single 30-minute, post-admission, bedside patient education intervention which explained to patients' to how to recognize symptoms of any possible worsening of their condition and the importance of reporting them immediately. They found this intervention to significantly increased patients' ability to monitor and report changes in their condition; they concluded that patients' themselves can become part of an early warning, rapid response system. 

Most patients can collaborate with nurses, to a greater or lesser degree, in developing their nursing care plan by helping to select their nursing diagnoses, nursing outcomes and nursing interventions. As a patient's nursing-sensitive outcomes are measured on their Likert scale, usually every twelve hours, patients can develop an active interest in the effectiveness of their nursing care and participate in deciding about any care plan modifications. In-hospital patient engagement in self-care can enhance any aspect of their protection and clinical care. For example, Tzeng and Yin (2015) developed simple but comprehensive guidelines to foster patients' engagement in a hospital's fall prevention program designed to minimize their possibility of falling. 

Engagement in self-care and the transition from hospital to home.

Barriers to engagement in self-care can arise as patients are discharged from hospital to home. For example, Jiggins (2016) found that the clinical summary of patients' health status and plan of care, given to them on discharge from hospital, is often not easy for patients to use because it appears complex and unreadable, is often inconsistent with patients' experience of their illness and does not suggest self-care resources.

Engagement in self-care can be a major challenge for older people. Serious barriers to their engagement in self-care, initially apparent during a hospital stay, can be overlooked as they are discharged home and have serious implications for home and community self-care. Frequently, older people face engaging with the care demands of multiple chronic illnesses and complex healthcare needs. In addition, they may be frail and tire easily, have cognitive limitations, poor health literacy and tend to passively avoid engaging in self-care. The effectiveness of interventions designed to enhance their engagement in self-care has been limited (Marek et al. 2013).

In fact, expecting some older patients to engage substantially is self-care could be an overwhelming burden for them, and thus be unethical. Dong et al. (2012) propose that increased health-related self-care burden on the limited resources of frail older people can lead them to a general state of self-neglect, including neglect of activities of daily living. In a large population of community-dwelling older adults, they found self-neglect to be common, under-recognized and poorly understood and suggested that health professionals be alert to the scope and nature of this wide-spread public health problem.

In Careful Nursing, when patients are limited in their ability to engage in self-care. This concept must be linked closely to the concept of family, friends and community supportive participation in patients' care. 

Home and community-based engagement in self-care: living with chronic illness

Globally, approximately one third of all adults suffer from more than one chronic illness (Hajata & Stein, 2018). Some engage proactively in learning to live with their illness in a healthy way. Others find their illness and its implications for self-care difficult to understand and required guidance and support. Research findings can be used to help understand and support their needs.

For example, based on a wide-ranging analysis of literature on living with chronic illness, Miller et al. (2015) found that engagement in chronic illness self-care is a multidimensional process that ebbs and flows over time in relation to changes in patients' intrapersonal, interpersonal and environmental experiences of living with chronic illness. They identified five core self-care behaviours: problem solving, decision-making, resource utilization, forming relationships with healthcare providers, and taking action. Patients can be encouraged to individualize these behaviours by self-tailoring them according to their "personal evaluation of their own needs and not necessarily their health care providers' evaluation of their needs" (p. 156.).

Kneck et al. (2012) also emphasize the importance of patients' engagement in self-care being guided by their own personal evaluation of their needs. They stress the importance of patients' sensitivity to bodily experiences of their illness as a basis for evaluating their self-care needs. In their research concerning patients with diabetes mellitus they found that patients relied significantly on changes in bodily experiences to monitor their health status. Patients' attention to the meaning of personal bodily experiences and discussing them among themselves helped them make a successful transition to living with this chronic illness.

Self-care which facilitated living with chronic illness was found to be an integrative process, rather than a linear process, and included attempting to hold on to an old way of life while simultaneously creating a new way of life that provided a new sense of balance and health. Within this process patients learned to care for themselves during inevitable times of struggle related to external life events.

Nursing theoretical perspectives of self-care

While most nurse theorists generally address patients' engagement in self-care, some do so specifically. Most of us are familiar with Orem's theory of self-care (Berbiglia & Banfield, 2014) which provides a comprehensive framework for conceptualizing patients' engagement in self-care and the influence of factors which enhance or diminish self-care ability. Engagement in self-care can also be conceptualized using the middle-range theory of health/illness transitions developed by Meleis (2014). This theory focuses on the influence of the social context in which new knowledge and alteration in self-care behaviour takes place. (2) Perspectives on patient engagement on self-care by nurses in practice.

From their practice perspective, nurses take a range of approaches to enabling patients' engagement in self-care and their role in supporting patients. Van Hooft et al. (2015) identified four approaches; that of a coach who focuses on activities of daily living, a clinician who focuses on adherence to medical treatment, a gatekeeper who focuses on decreasing healthcare costs, and an educator who focuses on helping patients learn how to engage in self-care. Van Hooft et al. concluded that nurses tend to focus on one approach, and that education programs were needed to equip nurses to engage in and combine all approaches. 

Bos-Touwen et al. (2015) examined the influence of nurses' approach to patient assessment on their recognition of patients' need to engage in self-care. They found that the way in which nurses assessed patients influenced patients' responses to the expectation that they engage in self-care. Most nurses assessed patients' motivation and ability to engage in self-care. But some limited their assessment only to patients' disease characteristics thereby limiting their ability to provide self-care guidance and support to patients.

In effect, some nurses inhibited patient engagement in self-care. This finding highlighted a serious problem in that the majority of patients who participated in this study were unprepared, unwilling or unable to engage in self-care. Obvious implications for nursing education were identified.

Comprehensive nursing education programs offered within the context of healthcare services organizations can help prioritise for nurses their responsibility to assess patients' ability to engage in self-care and give them the appropriate support to do so, especially patients living with long-term illness. Barnes et al. (2013) describe such a program designed for nurses caring for patients receiving hemodialysis. Despite practical challenges in implementing the program, it positively influenced nurses' awareness of the importance of patients' engagement in self-care and the degree of engagement in self-care by patients.

Patient engagement in self-care: a special nursing responsibility

An interesting research opportunity for nurses' further exploration of engagement in self-care behaviour is provided by a survey designed to identify patient healthcare engagement behaviours in community dwelling elderly people (Tzeng & Pierson, 2017). As the authors suggest, the ten survey categories and 51 items provide a foundation for further development and testing of the survey instrument.

Patients' engagement in self-care, or lack of engagement, can arise from and be influenced by many factors. But, for nursing there is always one key factor; the nurse-patient relationship. It is within the nurse-patient relationship that patient engagement in self-care is most effectively recognized and supported.

Thus, fostering patient engagement in self-care is a special nursing responsibility; it has been shown to have a crucial role in the health care reform, especially in relation to empowering patients to be fully engaged and active in self-care (Pelletier & Stichler 2013).

Through our practice experience we know that human engagement in self-care takes place in many ways and on many levels, just as the human desire for health and flourishing is ever-creative and multidimensional.

In encouraging patients' engagement in self-care, however common or uncommon their ways of undertaking this may be, we are helping them reach toward their full human potential in living, and also sometimes in dying. Consider the following patient experiences. 

Anna:

. . . a 53-year old woman with a long history of cholecystitis was admitted to a hospital surgical unit for an open cholecystectomy. She led a busy professional life as an accountant. She had been diagnosed with diabetes mellitus Type 1 a year earlier and reported that she was managing her treatment regimen well and had made necessary life-style adjustments with the help of her supportive family. Her surgery was successful and she was making a good recovery. She had a cheerful, optimistic attitude and had a good understanding of her post-operative self-care.

However, a nurse caring for Anna felt something was not quite right with her and organized her busy schedule to spend additional time with her. As they chatted generally, tears welled up in Anna's eyes. She began sobbing as she shared with the nurse her anguish about living with diabetes. She said she could cope with the technical details of living with it (blood sugar testing and insulin dosage) but "my whole life has changed . . . I'm not myself anymore". She felt helpless and longed for her previous relatively trouble-free life.

The nurse recognized that Anna was still in the process of integrating her long-term illness into her life. She worked with Anna to create for her a nursing care plan that she could use to continue this process. She helped her understand that her self-care included "listening to her body" and being guided by her inner sense of what she needed to do, as well as following technical guidelines. She also assured her that this process of learning a new form of self-care normally evolved over time and that she would gradually achieve a new balance in living a healthy life. 

This is a common example of difficulties patients can face as they engage in self-care related to a chronic illness. It is not unusual for a patient to be admitted to a hospital for one reason but have self-care concerns related to other health problems, particularly learning to live with a chronic illness. It is important that we assess patients for this possibility on their hospital admission, whatever their primary reason for admission.

Mark:

. . . .a 16- year old boy with bone cancer, diagnosed three years previously, was re-admitted to a children's hospital. Despite chemotherapy treatment, the cancer had spread through his body and was now causing him pain. His admission was for symptom management. The nurses knew him and were very fond of him. He was a well-educated, normal teenager who loved rock music and especially loved football, which he had played as long as he could. His pain became controlled again but his condition deteriorated.

Early one morning he told the nurses that he wanted to go to a saint's shrine in a church a few miles away. They were surprised as he had never seemed religious. They explained that it was just not possible for him to go because he was too weak and such a visit could not be facilitated. But Mark insisted that he had to go. 

When the paediatric nurse specialist came on duty she listened to and assessed Mark. She could see that his request reflected a deep self-care need. She contacted his family who lived some distance away and they supported his going to the shrine if it was possible. She contacted his oncologist who said that the decision about Mark going to the shrine was hers and whatever she decided, he would support her.

The nurse specialist helped Mark into a car and drove him to the church. He said very little but his desire to get to the shrine was clear. He was too weak to walk far so she took him into the church and to the shrine in a wheelchair. When they reached the shrine Mark said that he wanted to lie on the floor in front of the shrine and she helped him do this.

He lay there quietly with his eyes closed for an hour. As the nurse gently watched him her impression was that he was enveloped very deeply in his experience of being there. When he was ready she helped him up again into the wheelchair, took him to the car and drove him back to the hospital. He never said anything about his visit to the shrine and died peacefully three days later.

This is an uncommon example of a patient's engagement in self-care. In such cases we need to be aware of judgements we may make. Some nurses had distanced themselves from Mark's request because they thought it was "a bit weird". But the nurse specialist recognized this was something Mark greatly desired to do before he died; that it met a deep need he felt and bought him consolation and fortitude that helped him through his experience of dying. She also felt it was a gift to her to have accompanied him. 

Revised definition of patient engagement in self-care

An earlier definition of patient engagement n self-care (Meehan, 2012) requires revision, as follows:

Patient engagement in education and decision-making about their healthcare needs and care opportunities as they desire to and have the strength and capacity to do so. Patient engagement can range from intimations of care desires indicated by barely conscious patients to full control over self-care activities by patients who have the capacity to lead the multi-professional care team in choosing their recovery care plan and long-term health goals. Nurses provide for patients encouragement, education and on-going support so that patients may achieve independence or relative independence in caring for themselves.

Your rating of your attention to patient engagement in self-care:

When assessing newly admitted patients, I identify their level of engagement in daily living self-care: always____ sometimes____ rarely ____

I review my patients engagement in self-care and plans for post-discharge engagement in self-care, daily: always____ sometimes____ rarely ____

I assess the implications of my patients medical/surgical treatment for their engagement in self-care following hospital discharge: always____ sometimes____ rarely ____ 

I make time to explore informally with patients their post-hospital discharge plan and ability to engage in on-going self-care: always____ sometimes____ rarely ____

I provide education and support needed by patients to engage effectively in self-care following hospital discharge: always____ sometimes____ rarely ____

I assist patients to identify family members and community services able to assist and support them to engage in on-going self-care: always____ sometimes____ rarely ____ 

Based on your assessment of your current skill in guiding patient engagement in self-care, decide what you will do to further develop your skill in implementing this concept. 

Make your own patient engagement in self-care 'I will' statements . . . 

Examples of patient engagement in self-care 'I will' statements:

. . . think "engagement in self-care" in relation to all patients I care for

. . . analyse patient engagement in self-care needs and capacity during my admission assessments

. . . assess patients' family and community support available to assist them engage in self-care 

. . . critically review the Tzeng & Pierson (2017) healthcare engagement behaviours survey and consider how its findings can be built on. 

 

References

Agency for Healthcare Research and Quality (2018). Retrieved from http://www.ahrq.gov/research/findings/final-reports/ptfamilyscan/ptfamily1.html

Barnes, T., Hancock, K. & Dainton, M. (2013). Training nurses to support greater patient engagement in haemodialysis. Journal of Renal Care, 39(Supplement 1), 10-18.

Berbiglia, V. A. & Banfield, B. (2014). Dorothea E. Orem: Self-Care Deficit theory of nursing. In Alligood, M. R., (Ed.), Nursing Theorists and Their Work. (8th Ed.), 240-257, St Louis: Elsivier Mosby.

Bos-Touwen, I., Dijkkamp, E., Kars, M., Trappenburg, J., DeWit, N. & Schuurmans, M. (2015). Potential for self-management in chronic care nurses' assessments of patients. Nursing Research, 64, 282-290.

Dong, X., Simon, M. A, Mosqueda, L. & Evans, D. A. (2012). Prevalence of elder self-neglect in a community-dwelling population: hoarding, hygiene, and environmental hazards. Journal of Aging and Health, 24, 507–524.

Hajata, C. & Stein, E. (2018). The global burden of multiple chronic conditions: A narrative review. Preventive Medicine Reports, 12, 284-293.

Jiggins, K. (2016). A content analysis of the meaningful use clinical summary: do clinical summaries promote patient engagement? Primary Health Care Research & Development, 17, 238–251.

Kneck, A., Klang, B. & Fagerberg, I. (2012). Learning to live with diabetes – integrating an illness or objectifying a disease. Journal of Advanced Nursing, 68, 2486–2495.

Marek, K. D., Stetzer, F., Ryan, P. A., Bub, L. D., Adams, S. J., Schlidt A., Lancaster, R. & O'Brien, A-M. (2013). Nurse care coordination and technology effects on health status of frail older adults via enhanced self-management of medication. Nursing Research, 62, 269-278.

Meehan TC. (2012). The Careful Nursing philosophy and professional practice model. Journal of Clinical Nursing, 21, 2905-2916.

Meleis, A.I. (2014). Theoretical Nursing: Development and Progress. Philadelphia: Lippincott, Williams and Wilkins.

Miller, W. R., Lasiter, S., Ellis, R. B. & Buelow, J. M. (2015). Chronic disease self-management: A hybrid concept analysis. Nursing Outlook, 63, 154-161.

Pelletier, L. R. & Stichler, J. F. (2013). Patient engagement and activation: a health reform imperative and improvement opportunity for nursing. Nursing Outlook, 61, 51-54.

See, M. T. A., Chan, W. S., Huggan, P. J., Tay, Y. K. & Liaw, S. Y. (2014). Effectiveness of a patient education intervention in enhancing the self-efficacy of hospitalized patients to recognize and report acute deteriorating conditions. Patient Education and Counseling, 97, 122–127.

Tzeng, H-M. (2014). Patient engagement and self-management across the care continuum. MEDSURG Nursing, 23, 424-426.

Tzeng, H-M. (2017) Measuring patient engagement: which healthcare engagement behaviours are important to patients? Journal of Advanced Nursing, 73, 1.604–1609

Tzeng, H-M, & Yin, C-Y. (2015). Patient engagement in hospital fall prevention. Nursing Economics, 33, 326-324.

van Hooft, S. M., Dwarswaard, J., Jedeloo, S., Bal, R. & van Staa, A. (2015).
Four perspectives on self-management support by nurses for people with chronic conditions: A Q-methodological study. International Journal of Nursing Studies 52, 157–166.

Weil, A. R. (2016). The patient engagement imperative. Health Affairs, 35, 563. 

 

Therese C. Meehan ¬© July 2020