Title: Informal Learning in Healthcare
Author Name: Stacy Hicks
Introduction
Many definitions of informal learning focus on its learner-controlled nature (Reiser & Dempsey, 2018). According to Alan Rodgers, “In a large part, unconscious informal learning takes place through a process of assimilation,” (Rogers, 2014). In the text Trends and Issues in Instructional Design and Technology, informal learning is defined as “a process in which learners set their own learning objectives and determine for themselves what successful completion looks like,” (Reiser & Dempsey, 2018). Another resource offers the following definition, “Informal learning is the unofficial, unscheduled, impromptu way people learn to do their jobs,” (Cross, 2007). Cross states that “informal learning often flies under the official radar. It can happen intentionally or inadvertently.” (Cross, 2007). Informal learning can happen in everyday casual settings such as watching a You Tube video to learn how accomplish a desired task, or getting ideas for a crafting project from Pinterest. An exchange of a recipe is a subtle way in which informal learning is displayed. “Informal learning is effective because it is personal. The individual calls the shots. The learner is responsible.” (Cross, 2007). Unlike formal learning, informal learning does not necessarily have to be designed by an instructional designer, but can still have some of the principles, objectives and outcomes as formal learning. Informal learning can take place in any setting and can be individual or group learning. In this chapter, we will focus on both instances of informal learning in a health care setting.
The text Trends and Issues in Instruction Design and Technology states, “Education is a cost center, not a profit center, for health care institutions. These costs are often underwritten from income generated by hospitals and clinics. Attempts to cut costs, especially through managed care, not only affect the delivery of health services, but professional education and training as well.” (Reiser & Dempsey, 2018). The rising cost of medical care continues to take a toll on families as is the case for families who are faced with the costs of caring for a family member who is diagnosed with ALS. According to one source, “There are only a few recently published reports of the cost of amyotrophic lateral sclerosis (ALS) care in the United States. Over a 10-year period (2001-2010), all expenses related to the cost of care for an individual patient were collected concurrently and then analyzed in 2012. Results showed that total disease-duration costs were $1,433,992 (85% paid by insurance, 9% paid by family, 6% paid by charities). The highest costs were for in-home caregivers ($669,150), ventilation ($212,430) and hospital care ($114,558) (Obermann & Lyon, 2014). Given these costs associated with patient care, families often times have to make difficult decisions regarding the care options for the patient, especially the decision to mechanically ventilate a patient who ultimately has difficulty breathing. In this chapter we will look at how families of patients with Amyotrophic Lateral Sclerosis (ALS), benefit from informal learning experiences. We will review briefly how patient care training through informal learning opportunities offered through the ALS Association and ALS clinics such as the Pranger ALS Clinic, which is part of the University of Michigan Health System, Neurosciences department, help to provide caretakers with the basic skills they need to perform home care. The ability to perform some of the clinical tasks at home, could help to alleviate some of the out-of-pocket costs, albeit a daunting and tiring undertaking.
Overview of the Case
Amyotrophic Lateral Sclerosis (ALS) results from degeneration of the motor nerve cells (or motor neurons) in the brain and spinal cord. These are the nerve cells that control the muscles. Muscular weakness develops as the disease progresses and the nerves become more affected by the disease process. This weakness may appear in the legs, the arms, or in the muscles used for speech, swallowing, or breathing (Gelinas, Miller & O’Connor). ALS is often referred to as Lou Gehrig’s disease. The world-renowned baseball player for the New York Yankees is probably the most famous individual who ever developed ALS (Gelinas, Miller & O’Connor). Although there have been great strides towards identifying a cause, developing treatment plans and ultimately finding a cure, patients who are diagnosed with this disease are terminal. Patients who receive an ALS diagnosis are put in contact with their local chapter of the ALS Association who can help the patient to identify ALS clinics and community resources that can provide them with the ongoing support and treatment them and their families will need. The ALS Association organization’s website sates “The ALS Association collaborates with some of the best ALS physicians and clinics across the United States to help ensure that people living with ALS have access to specialized care, based on best practices. The ALS Association’s Certified Treatment Centers of Excellence and Recognized Treatment Centers provide compassionate care in a supportive, family-oriented atmosphere.” (ALS Association, Certified Centers & Clinics, 2021). The ALS Association’s nationwide network of chapters and other partners provide localized patient and family support in communities across the country. This network of chapter-based professionals delivers a robust portfolio of care and support programs designed to enhance quality of life and support families affected by ALS. The ALS association provides online support and resources to patients and families affected by the disease. There are many clinics throughout the country that provide multidisciplinary care for patients on their journey throughout the disease. Once a patient is discharged from the hospital, families no longer have the round-the clock clinical staff to provide the specialized care that each patient requires, and clinical visits are primarily for in office patient check-ups. Once the patient is at home, family members become the primary care takers and must quickly learn how to manage the round-the-clock, day-to-day care activities as it relates to their loved one. Especially challenging is managing care for patients unable to move due to the loss of muscle function and providing respiratory care for those who have elected to receive mechanical ventilation to assist with breathing. The mechanical ventilation could be non-invasive or invasive. Non-invasive ventilation (NIV) refers to the administration of ventilatory support through the upper airways without using invasive artificial airways like endotracheal tubes or tracheostomy (Dorst & Ludolph, 2019). The ALS Association and the Pranger ALS Clinic are two resources that provide families with informal training to perform patient care at home, helping to provide alternatives to the costly options of nursing homes or other care facilities or hiring a licensed in-home nurse.
Solutions Implemented
One of the organizations that provides informal patient care training is the Pranger Clinic, which is part of the University of Michigan ALS Center. “The Pranger ALS Clinic at the ALS Center of Excellence is committed to providing compassionate care to patients with ALS. Certified by the ALS Association for more than two decades, we offer treatments that maximize quality of life and functional independence and manage symptoms. We know that ALS affects the whole family unit and offer compassion and support not only to our patients, but also their family and friends. Treating ALS requires a large, dedicated multidisciplinary team, such as the exceptional group we have assembled at the University of Michigan,” (ALS Center of Excellence Pranger ALS Clinic). As a multidisciplinary support system, Pranger ALS clinic offers its patients and their families a wide array of services on their journey with ALS. These support services typically fall under the informal learning approach as families are typically learning in the moment from the doctors and the nursing staff at the clinical visits. Given the deterioration of the muscles that control breathing as ALS progresses, one of the decisions a family may face is whether to use mechanical ventilation when their loved begins to experience difficulty breathing. Families of patients who choose this option typically do not have the skills necessary to perform home care for a ventilated patient and lack the financial resources to hire skilled nursing. Family members are usually learning as they go, which could be very scary and stressful. Pulmonologist Philip Choi, heads the Assisted Ventilation Clinic at Pranger Clinic, which assist patients who decide to go on “The Trach Trail.” “The trail is a set of steps that we have put in place to make sure our inpatients will be cared for safely once they return home,” Choi said. “They will ensure you and family members know how to work the ventilator and trach, and be able to troubleshoot any problems that may arise,” (ALS Center of Excellence Pranger ALS Clinic).
Another option for patients and their families is to connect with their local ALS Association chapter. The ALS Association’s nationwide network of chapters and other partners provide localized patient and family support in communities across the country. This network of chapter-based professionals delivers a robust portfolio of care and support programs designed to enhance quality of life and support families affected by ALS. The ALS association provides online support and resources to patients and families that are available on demand and can accessed when then the care-taker needs just-in time information.
Although informal learning often happens without the direct involvement of instructional designers, we can provide the framework that makes high-quality informal learning available and support the learning process (Reiser & Dempsey, 2018). Another challenge for patients who chose the route of mechanical ventilation is the loss of communication. When caring for mechanically ventilated patients, families must also learn how to communicate effectively. “Familiarity with alternative methods of communication is important. Nonverbal methods of communication include lip reading/mouthing of words, gestures and facial movements, writing tablets and boards, and electronic communication devices,” (Caple and Balderrama, 2017). Through informal learning both from doctors and the clinical staff, families can learn various ways of communicating with a mechanically ventilated ALS patient using some of the following recommendations from a clinical source:
- Use of conversational language conveys concern for the patient’s psychosocial wellbeing; topics can include the patient’s feelings, likes and dislikes, family and friends, and plans for the future
- Nonverbal methods of communication include lip reading/mouthing of words, gestures and facial movements, writing tablets and boards, and electronic communication devices. Experts suggest first offering the patient a writing tablet, as this is often the easiest and most readily available communication method.
- If the patient is unable to write due to cognitive or physical impairment, encourage use of an alphabet board or an image board (Caple and Balderrama, 2017)
Although there was no formal instructional design process, the key outcome was still achieved, giving patients and their families access to key learnings that could be implemented immediately to care for their loved ones.
Outcomes
The primary outcomes of the case presented are; healthcare cost reduction for the families, cost savings to the medical facilities using informal training in lieu of an expensive formal training program and important patient-care training that could help to improve the quality of life for the patient. One article shares additional outcomes/benefits to implementing informal learning in healthcare:
- Informal education can be viewed as an exchange of information among stakeholders in the health care industry attempting to improve outcomes.
- As hospitalists impart knowledge to primary care physicians (PCPs), specialists/surgeons, other health care professionals (including nurses and pharmacists), patients, families, and hospital administrators, they reap benefits as well.
- These stakeholders stand to profit from the knowledge hospitalists can impart in daily interactions within the hospital and in less formal settings. (Pak & Jones, 2005)
In addition, patients are able to remain in their home as they continue on their journey through the disease. Family members are able to learn what they need to support the loved ones without needing to invest additional time and money to participate in formal training.
Implications
The medical field is constantly changing and the need for patient education is growing along with it. As the cost of medical care rises, patients and their families are often left with difficult decisions about how to continue to care for their loved ones and keep a roof over their heads. This is especially true for patients diagnosed with Amyotrophic Lateral Sclerosis (ALS). The case we reviewed was an example of how incorporating informal learning opportunities was not only a cost benefit to the patient, but also to the medical facility. The case exemplified how nurses and doctors use informal training opportunities to teach various elements of patient care, from basic grooming and dispensing medicine to advanced care such as caring for ALS patients on mechanical ventilation. The burden of patient care at home does take its toll on the family, so access to self-care, and respite opportunities must also be considered, but the benefit of transfer of knowledge through informal training does provide a cost-effective alternative for supplemental care at home.
References
Caple, C. R. B. M., & Balderrama, D. R. M. (2017). Mechanical Ventilation: Facilitating Patient Communication. CINAHL Nursing Guide.
Cross, J. (2007). Informal Learning: Rediscovering the Natural Pathways That Inspire Innovation and Performance. Pfeiffer.
Dorst, J., & Ludolph, A. C. (2019). Non-invasive ventilation in amyotrophic lateral sclerosis. Therapeutic advances in neurological disorders, 12, 1756286419857040. https://doi.org/10.1177/1756286419857040
Ellman, D. (2021).
Assisted Ventilation Clinic Helps ALS Patient Maintain His Quality of Life (uofmhealth.org)
Miller, R. G., Gelinas, D. F., & O’Connor, P. (2005). Amyotrophic lateral sclerosis. [electronic resource]. Demos Medical Pub.
Obermann, M., & Lyon, M. (2015). Financial cost of amyotrophic lateral sclerosis: A case study. Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration, 16(1/2), 54–57. https://doi.org/10.3109/21678421.2014.951946
Reiser, R. A., & Dempsey, J. V. (2018). Trends and Issues in Instructional Design and Technology (4th ed.) New York, NY: Pearson.
Rogers, A. (2014). The base of the iceberg: informal learning and its impact on formal and non-formal learning. Leverkusen, Germany; Berlin, Germany: Barbara Budrich Publishers.
The ALS Association Certified Centers and Clinics
https://www.als.org/local-support/certified-centers-clinics?f%5B0%5D=centers_and_clinics_group_state%3AMichigan
Pad, M., Jones, T. (2005). Education: Hospitalists Add Value to Formal and Informal Learning Processes
Education: Hospitalists Add Value to Formal and Informal Learning Processes