By Elena Wong Espiritu, OTD, OTR/L, BCPR
Chronic conditions are defined as conditions that last 12 months or longer, resulting in functional limitations and the need for ongoing medical care or attention.1 Chronic disease affects nearly one-half of the American population, and 84% of all healthcare expenditures are related to chronic disease.2,3 Not surprisingly, these numbers continue to rise, and the number of Americans affected by chronic conditions is expected to increase by 37% between 2000 and 2030.4,3 These ongoing conditions are the nation’s primary cause of preventable death and lifelong disability, and lead to consequences such as compromised quality of life and significant healthcare costs.5 Chronic conditions also have a great impact on participation in occupations and meaningful activities.6,7
While to some people, this information may seem staggering and even discouraging, recent healthcare reform initiatives focus on wellness, prevention, and management of chronic conditions.8 Well-developed, evidence-based self-management programs that address chronic condition management have demonstrated improved health outcomes and reduced healthcare costs.8,9
Self-management is an approach where the patient and the healthcare professionals work collaboratively to manage the impact of chronic conditions on one’s life.10 Core principles guiding this collaboration include: (1) a focus on wellness as opposed to illness11; (2) patients, not healthcare professionals, accept responsibility for managing the illness, including making necessary behavior changes12; (3) patients take control of their situation and make their own decisions13; (4) an individualized approach, with patients defining the problems and interventions tailored to meet their specific needs11; and (5) a collaborative relationship in which the healthcare professional and the patient work together in a mutually beneficial, respectful partnership with each person bringing an expertise to the relationship.14
The healthcare professional knows information about the condition and intervention options, and the client is an expert in his or her own life and circumstances.15,16 In a self-management approach, respect for client choice is foundational and overarching.17 All of these principles empower the patient to take an active role in managing his or her health; thus, self-manages. Healthcare professionals do not manage; however, they provide support to help the patient develop abilities to be successful in day-to-day symptom management through structured skill development.10,18
Whether a patient is experiencing a new condition or one that has been present throughout a lifetime, the reality is that chronic disease symptoms constantly change.11 Symptoms change day to day and even moment by moment. Because much of the disease-management process takes place outside of the medical setting, it is the patient’s responsibility to make good decisions regarding symptom management apart from the guidance and input of the healthcare professional.10,19,20
For example, patients may have to make decisions such as, “I’m having a lot of pain right now. Should I go out with my friends later tonight?,” or “My Social Security check is late this month and I feel pretty good, so should I wait to fill my prescriptions?” Other patients may put themselves at a higher risk for injury when they make decisions such as, “I feel very dizzy, but I want to be clean, so I’m going to go ahead and take a shower,” and “I know that I might fall when I rush, but I don’t want to miss phone calls.” In many cases, learning to manage symptoms can be one of the most difficult parts of the disease process.
Self-management interventions focus on addressing attitudes, behaviors, and skill development.11 In self-management, patients are equipped to manage their chronic conditions and related symptoms by using specific skills, such as symptom monitoring, problem-solving, decision-making, action planning, and locating and using resources and communication.11,21,22
For example, healthcare professionals can teach a patient to pay attention to what he or she feels like before and after doing pursed lip breathing in the process of weaning off of supplemental oxygen (an example of symptom monitoring). Patients could set a specific goal to aid them in being more successful in completing daily exercise programs or implementing a swallowing strategy during meal times (examples of action planning). By brainstorming potential solutions to challenges, a patient might better manage bowel and bladder routines, adhere to dietary restrictions, or continue in therapy sessions despite pain, fatigue, or weakness (examples of problem-solving). As a patient develops and practices these skills, he or she will feel more empowered to take control of circumstances and symptoms.
So what is the connection between chronic conditions, self-management, and inpatient rehabilitation settings? For most patients, services provided in inpatient rehabilitation settings address changes in medical status or functional abilities that are either a direct result of poor management of a chronic disease or a new disease onset. For example, a stroke may be a result of uncontrolled hypertension, or a multiple sclerosis exacerbation occurs because of medication noncompliance or decreased management of symptoms. In the case of a new disease onset, the person has now been thrust on a journey of learning how to manage a chronic condition for the rest of his or her life. Consider a person with a recent spinal cord injury having to perform regular pressure relief to avoid pressure sores or a person managing lymphedema following breast cancer.
Traditionally in rehabilitation settings, the interdisciplinary team focuses on improved functional independence with the goal of a community discharge. Occupational therapists teach patients adaptive techniques for dressing, recommend equipment for bathroom transfers, and take them on community outings. Physical therapists instruct patients in walking using an assistive device, how to ascend/descend stairs, and perform home exercise programs. Nurses review medication routines and self-catheterization techniques, while speech-language pathologists address swallowing, cognition, and communication deficits.
While all of these skills are important to improve a patient’s level of independence, is that enough to promote successful, daily management of a chronic condition and its associated symptoms? Is it acceptable for the interdisciplinary team to assume that patients will learn how to successfully manage their chronic conditions following discharge, considering the significant consequences related to poor chronic disease management?
Most rehabilitation facilities take an interdisciplinary approach to care with shared goals and outcomes.23 Multidisciplinary interventions have been identified as a common characteristic of programs that demonstrate improved occupational outcomes for adults with chronic diseases.24 One way that rehabilitation teams could add distinct value to the services they provide is by collectively addressing chronic disease symptom management within the context of a traditional rehabilitation setting using a self-management approach. While healthcare professionals have traditionally used a self-management approach within community-based settings,22 it could be argued that introducing a self-management approach earlier in the rehabilitation process may help to develop self-efficacy, patterns, and habits that will eventually lead to continued chronic condition symptom management following hospital discharge.
The rehabilitation team provides the self-management support the patient needs to first learn skills and then to develop confidence to handle any situation that may arise. Healthcare professionals do this by providing education, sharing information, helping in intentional, structured skill development, and creating situations where a patient can practice using these skills.10,21 If this sounds familiar, this is exactly what the rehabilitation team does on a daily basis throughout a patient’s rehabilitation stay. It is just a matter of considering how self-management support can be intentionally directed toward issues related to chronic disease.
For example, the patient decides whether to take pain medications 30 minutes or 1 hour prior to therapy. After trying each time frame, the patient compares pain levels during therapy and decides the best time to take the medications (examples of decision-making and symptom monitoring). A patient sets a goal of transferring out of bed and sitting in a bedside chair for each meal (an example of action planning). If a patient had a goal of using the bedside commode instead of a bedpan, that patient could intentionally communicate with the nursing staff and describe the help needed for the toileting and toilet transfers (examples of action planning and communication). If all of the rehab staff members were aware of these goals, there could truly be a coordinated effort to help the patient achieve them and the patient is encouraged to take a more active, leading role in his recovery.
Case Example #1: Individual Patient
Dorothy is a patient admitted to a subacute rehabilitation unit due to debility following a liver transplant, as a result of cholangiocarcinoma. Due to multiple postoperative complications, she has been in the hospital for more than 2 months.
Dorothy has not had a bowel movement in 4 days despite feeling like she “has to go.” She reports experiencing constipation at home, as well. Even though Dorothy is physically able to get up to the bathroom, she chooses to use a diaper with episodes of incontinence.
The nurse brainstorms with Dorothy the potential causes for her constipation and discusses ways to resolve the situation, including methods that work for her at home (an example of problem-solving). By collaboratively working together, the nurse shares her knowledge related to Dorothy’s current issues and Dorothy contributes based on her knowledge of her own body and past experiences.
Dorothy’s husband works out of the country; therefore, Dorothy is planning to discharge to her niece’s home where both she and Dorothy’s sister can provide 24-hour assistance. Dorothy states that she would like to be as independent as possible, and expresses concern that her family will provide more assistance than she needs. The health psychologist works with Dorothy in determining the best ways to convey her feelings to her family and role-plays the encounter to increase Dorothy’s confidence in being able to respond effectively (an example of communication).
Overall, Dorothy’s functional status is contact guard/minimal assistance for all ADLs and functional mobility. During therapy sessions, she is very hesitant and anxious to try any tasks that she perceives to be challenging. She always chooses the less challenging option (eg, ride in the wheelchair rather than walk, bathe sinkside rather than in the shower, work in her room rather than go to the therapy gym, use the bedpan rather than walk to the bathroom and use the toilet) even though she has the physical capabilities to complete these tasks. When asked about her own goals, she responds, “To walk.” Dorothy constantly states that she is not at the same level that she was before, and oftentimes she becomes emotional because of her perceived lack of progress.
At the beginning of the week, Dorothy makes a goal for the number of times that she will walk rather than ride in a wheelchair to the therapy gym (an example of action planning). She decides which days she will walk and which days she will ride, and writes them on her wall calendar (an example of decision-making). Not only can members of the rehab team ask Dorothy about her walking goal, but meeting the specific action plan is a tangible demonstration of progress and leads to opportunities for continued encouragement to try tasks perceived to be challenging.
Case Example #2: Individual Patient
Mike’s patient status is post a laminectomy whose overall functional status is well below his prior level of function, primarily related to decreased activity tolerance, difficulty with standing for long periods of time, poor pain management, and anxiety. One of his rehab goals is to go grocery shopping. The reason behind this goal, he says, is that he enjoys having friends visit his home and cooking for them. His occupational therapist chooses to incorporate a self-management approach with Mike.
Before Mike takes the trip to the grocery store, he and his therapist collaboratively brainstorm potential challenges that might occur during their community outing. Potential challenges include: 1) Mike feeling stressed about moving slowly and being in people’s way in a crowded store; 2) stairs to navigate; 3) Mike’s inability to carry items while walking with his walker; and 4) Mike’s fatigue from his morning routine would limit his ability to complete the community outing. Based on these potential challenges, they problem-solve potential solutions to address these challenges (an example of problem-solving). Mike calls the store to ask about their busy times, if there are stairs present, and if a store employee would be available to assist with his shopping (an example of locating and using resources).
Next, Mike and his therapist develop a timeline so he can plan his day and the activities needed for him to be successful. Mike communicates with the nursing staff about the time at which he needs to start his morning routine and the help he will need to be ready on time and still have time to rest before going to the grocery store (an example of communication). He also decides the best time to take his pain medications so he has adequate relief for the entire trip (an example of decision-making).
Finally, he sets goals for how far he will walk within the store, how many times he will stand, and how long he will stand during the trip (an example of action planning). Mike shares his plans with the various members of the rehab team, and they are able to support him throughout the planning process.
Case Example #3: Patient Group
Patients who are scheduled for discharge from acute rehab within a week participate in a community reintegration group. They meet for 1 hour per day for 3 days to prepare for taking a trip to a restaurant, and the community outing is scheduled for the fourth day. The patients develop a list of logistical information they must know to successfully visit the restaurant (eg, transportation and directions, the restaurant’s handicapped accessibility, menu options and cost, and weather).
Patients individually locate and use resources to find information and report back to the group (an example of locating and using resources). Members of the rehabilitation team are available to provide support and information as needed. Patients consider individual needs such as medication schedules, bladder management, and dietary restrictions, and consult with rehabilitation team dieticians and nurses to make decisions about best choices (examples of communication and decision-making). Patients share concerns with the group, and others offer suggestions about how to overcome challenges (an example of problem-solving). During both the outing and postouting debriefing, patients encourage one another and discuss how to apply what they learned to community activities following discharge.
In each of these cases, patients are able to accomplish the rehabilitation therapy goals they set for themselves (eg, complete ADLs, manage bowel issues, improve activity tolerance, walk specific distances, and participate in a community outing). But by incorporating a self-management approach, patients are also able to take initiative and manage their symptoms and circumstances, using developed skills. They inform others of what assistance they need, make decisions based on personal needs, problem-solve potential challenges, and find and use resources. The entire rehabilitation team supports these patients as they develop these skills and provide opportunities for them to practice within a controlled situation. In the end, each patient reports feeling better equipped and more confident to self-manage circumstances that might arise in the future following discharge, leading to increased independence, participation, and quality of life.
Rehab teams can add value to the services they provide within the traditional rehab setting by being proactive and incorporating a self-management approach. In doing so, patients are not only learning adaptive skills for increased functional independence, but they are also developing skills they can use to manage the ever-changing, daily circumstances associated with chronic conditions. As patients are able to successfully manage their chronic conditions, it will be less likely they will experience another episode requiring future hospitalization. RM
Elena Wong Espiritu, OTD, OTR/L, BCPR, is an assistant professor in the School of Occupational Therapy, teaching both in the MSOT and OTD programs at Belmont University in Nashville, Tenn. Prior to coming to Belmont, she worked for 10 years in the adult physical disabilities setting (acute care, inpatient acute rehabilitation, and outpatient) both as a clinician and team coordinator. She has presented both at the local and national level about the application of self-management related to chronic disease management and is a facilitator for the Chronic Disease Self-Management Program. For more information, contact [email protected].
- Goodman RA, Posner SF, Huang ES, Parekh AK, Koh HK. Defining and measuring chronic conditions: Imperatives for research, policy, program, and practice. Prev Chronic Dis. 2013;10:120239. doi:http://dx.doi.org/10.5888/pcd10.120239.
- Ward BW, Schiller JS, Goodman RA. Multiple chronic conditions among US adults: A 2012 update. Prev Chronic Dis. 2014;11:130389. DOI: http://dx.doi.org/10.5888/pcd11.130389
- Robert Wood Johnson Foundation. Chronic care: Making the case for ongoing care. http://www.rwjf.org/content/dam/farm/reports/reports/2010/rwjf54583. Published February 2010. Accessed September 24, 2014.
- Li C, Balluz LS, Okoro CA, et al. Surveillance of certain health behaviors and conditions among states and selected local areas — Behavioral Risk Factor Surveillance System, United States, 2009. MMWR Surveill Summ 2011; 60(9):1-250.
- Chronic disease prevention and health promotion. Centers for Disease Control and Prevention Website. http://www.cdc.gov/chronicdisease/. Updated September 9, 2014. Accessed September 24, 2014.
- White C, Lentin, P, Farnworth, L. An investigation into the role and meaning of occupation for people living with ongoing health conditions. Au Occup Ther J. 2013;60:20-29. doi: 10.1111/1440-1630.12023
- US Department of Health and Human Services. Multiple chronic conditions – A strategic framework: Optimum health and quality of life for individuals with multiple chronic conditions. www.hhs.gov/ash/initiatives/mcc/mcc_framework.pdf. Published December 2010. Accessed September 24, 2014.
- The Centers for Medicare & Medicaid Services. Report to congress: The centers for Medicare and Medicaid services’ evaluation of community-based wellness and prevention programs under section 4202(b). http://innovation.cms.gov/Files/reports/CommunityWellnessRTC.pdf. Published September 30, 2013. Accessed September 24, 2014.
- Ahn SN, Basu R, Smith ML, et al. The impact of chronic disease self-management programs: Healthcare savings through a community-based intervention. BMC Public Health. 2013; 13:1141. doi:10.1186/1471-2458-13-1141.
- Lawn S, Schoo A. Supporting self-management of chronic health conditions: Common approaches. Patient Educ Couns. 2010;80:205-211.
- Lorig KR, Holman H. Self-management education: History, definition, outcomes, and mechanisms. Ann Behav Med. 2003;26:1-7. doi: 10.1207/S15324796ABM2601-01.
- Lake AJ, Staiger PK. Seeking the views of health professionals on translating chronic disease self-management models into practice. Patient Educ Couns. 2010;79:62-68. Doi: 10.1016/j.pec.2009.07.036.
- Rollnick S, Miller WR, Butler CC. Motivational Interviewing in Health Care: Helping Patients Change Behavior. New York, NY: Guilford Press; 2008.
- Du S, Yuan C. Evaluation of patient self-management outcomes in health care: A systematic review. Int Nurs Rev. 2010;57:159-167. http://dx.doi.org/10.1111/j.1466-7657.2009.00794.x.
- Bodenheimer T, Lorig K, Holman, H, Grumbach K. Patient self-management of chronic disease in primary care. JAMA. 2002;288:2469-2475. http://dx.doi.org/10.1001/jma.288.19.2469.
- Person-centered health care: What is it? National Ageing Research Institute Web site. http://www.mednwh.unimelb.edu.au/pchc/pchc.htm. Published April 2006. Accessed September 24, 2014.
- Lawn S, McMillan J, Pulvirenti M. Chronic condition self-management: Expectations of responsibility. Patient Educ Couns. 2011;84:e5-e8.
- Institute of Medicine. Report of a summit: The 1st annual crossing the quality chasm summit – A focus on communities. http://www.iom.edu/Reports/2004/1st-Annual-Crossing-the-Quality-Chasm-Summit-A-Focus-on-Communities.aspx. Published September 14, 2004. Accessed September 24, 2014.
- Osborne RH, Elsworth GR, Whitfield K. The health education impact questionnaire (heiQ): An outcomes and evaluation measure for patient education and self-management interventions for people with chronic conditions. Patient Educ Couns. 2007;66:192-201.
- Glasgow RE, Anderson RM. In diabetes care, moving from compliance to adherence is not enough. Diabetes Care. 1999;22:2090-2092.
- British Columbia Ministry of Health. Self-management support: A health care intervention. http://www.selfmanagementbc.ca/uploads/What%20is%20Self-Management/PDF/Self-Management%20Support%20A%20health%20care%20intervention%202011.pdf. Published June 10, 2011. Accessed September 25, 2014.
- Barlow J, Wright C, Sheasby J, Turner A, Hainsworth J. Self-management approaches for people with chronic conditions: A review. Patient Educ Couns. 2002;48:177-187.
- Schultz-Krohn W, Pendleton HM. Application of the occupational therapy practice framework to physical dysfunction. In: Pendleton HM, Schultz-Krohn W, eds. Pedretti’s Occupational Therapy: Practice Skills for Physical Dysfunction. 7th ed. St. Louis, MO: Elsevier Mosby; 2013: 41-42.
- Hand C, Law M, McColl MA. Occupational therapy interventions for chronic diseases: A scoping review. Am J Occup Ther. 2011;65:428-436. doi: 10.5014/ajot.2011.002071