* The Queensland Radium Institute – Division of Oncology, Royal Brisbane Hospital
** The Princess Alexandra Hospital, Department of Medical Oncology, Brisbane
Cancer treatments can be extremely frightening and intimidating. Patients receiving treatment therefore require adequate knowledge and skills to help them deal both with the treatments and the side effects of these treatments. The ambulatory care setting is now routinely used for people undergoing treatment for cancer. As such, nurses working in ambulatory care need to assist patients to gain the knowledge and skills necessary to enable self-care and self-management wherever possible1. Such self-care can be enhanced through the provision of easily understandable but comprehensive and creative patient and family education programs. Numerous studies have demonstrated that patients who receive a structured program of information during the course of radiation therapy report significantly less disruption in usual activities during and following radiation2, and that nurses can have a positive impact on patients by provision of information and support measures3. The purpose of this paper is to provide an overview of education strategies for patients receiving treatment for cancer in outpatient settings
Ambulatory cancer care today encompasses many situations that years ago would have been considered unthinkable. Specific programs are now aimed at patients undergoing outpatient stem cell transplant, those managing central venous catheters and infusional chemotherapy at home, and those patients required to self-administer colony stimulating factors. Outpatient blood component therapy, infusional antibiotic therapy, and home IV services for drugs such as Aredia, also keep manageable patients out of hospital. Ensuring that patients have the knowledge to undertake these tasks confidently and, importantly, safely outside the hospital environment, is a major responsibility of oncology nurses in collaboration with medical staff. As well, the support and input of allied health staff such as dietitians, social workers, and other specialist nurses, can also strengthen the teaching process4.
Similarly, radiation oncology nursing has evolved over the past couple of decades in Australia, due to reduced inpatient beds, more complex treatment protocols such as an increase in combination chemotherapy/ radiation protocols, and advances in brachytherapy. There is now a body of nursing knowledge in this specialty that is based on nursing, scientific, and psychosocial disciplines, which is necessary to effectively care for this patient population5. Radiation treatment is a highly technical form of medical treatment. While the side effects of radiation treatment are generally predictable as part of the course of treatment, each treatment course is extremely variable6. As such, educational interventions need to be individualised and flexible to accommodate individual needs and responses.
The literature on educational needs of patients undergoing cancer treatment is growing. Four main areas of informational needs of patients are commonly identified in this literature: disease concerns (eg diagnosis, treatment, tests), personal concerns (eg impact on disease and treatment on well-being and functioning), family concerns (impact on family), and social concerns (interaction with peers, leisure and social interests, relationships with health professionals)7. Other writers have noted that while patients with different diagnoses display specific educational requirements related to their disease, common concerns are identified relating to prognosis and disease progression, and treatment options8. Furthermore, the literature suggests that patients may have different concerns at different stages of their disease and treatment course9, and that patients may have difficulty recalling information given at certain times, such as close to the diagnosis10.
Several issues need to be taken into account in planning and implementing strategies to meet patients’ educational needs.
General principles of patient education
Before patient teaching can begin, several factors need to be considered. Firstly, it is necessary to assess patients’ physical and emotional well-being, their understanding of their diagnosis, and help them to understand the need for the planned course of treatment11. It must be recognised that some patients, especially in the early stage of the treatment course may not be ready or able to understand complex technical information, while other patients may desire in-depth information about all aspects of their care. Good patient assessment and communication skills, as well as a sound knowledge base of the patients’ disease and treatments are critical7. According to Harwood12, one of the biggest challenges we faced in the past was having access to information. She argues that now we are at the other end of the extreme, where people have access and the challenge now revolves around sifting through reams of information to find that which is not only credible but also appropriate to the patient’s situation12.
Secondly, it is important to evaluate the patient’s ability to understand what is being taught. Prior assessment of a patient‘s educational needs and learning abilities allows nurses to choose suitable methods of teaching, and ensure that patients receive the type of information that is desired and relevant for that patient13.
Thirdly, it is necessary to have some understanding of the patient’s family environment and support system14.
Fourthly, ensuring patients have time to ask questions, and assisting them to communicate their information needs to health professionals is important. Patients sometimes have difficulty in communicating their needs in brief consultations with health professionals, and patient education needs to be directed to developing skills in these areas.
Finally, it is essential that appropriate documentation of patient education is maintained throughout the patient’s care, as this assists in monitoring the progress of the patient and the family. Patient education is a continual process, so mechanisms to assist ongoing evaluation of patients’ information needs are critical. As many individual nurses and other members of the health care team are likely to be involved in the education process for any one patient, effective team communication is essential for facilitating a coordinated approach to patient education.
In many settings, a primary nurse or specialist nurse consultant oversees the education program, in order to facilitate a comprehensive and coordinated approach. For example, the Roving Clinical Nurse Consultant – Oncology Services role at the Princess Alexandra Hospital exists to provide chemotherapy education after initial medical consultation, administer and supervise chemotherapy in non-oncology units, offer support programs, and provide counselling and follow-up care to patients during the transition from diagnosis to the completion of the treatment phase.
Topics covered in patient education
The oncology nurse will reinforce the information provided by the oncologist and instigate a primary intervention strategy regarding the treatment process and its side effects, self-care activities, and other issues such as compliance with medication, comfort and nutrition, and physical care11. In the chemotherapy and radiotherapy setting, individual and family education sessions may focus on treatment side effects and their management, self-help strategies and support programs and groups. Ambulatory oncology patients in the larger teaching hospitals are also often included in clinical trial protocols, where they will have the assistance of an experienced research/clinical trials nurse who will provide extensive education, follow-up and support for patients on studies or trials.
Methods for patient education
In the context of cancer, nurses are often required to translate complex scientific information into meaningful explanations for patients and families. As such, nurses need to be innovative in their teaching methods. Modes of instruction may include hands-on demonstrations and written educational materials, to reinforce verbal information. A wide range of patient information booklets are available, with studies suggesting that such booklets may be most beneficial if they are written in plain English and presented to patients prior to treatment15. Many centres use visual and audio aids such as videos and audiotapes, which allow the patient to take information home and digest in a less threatening environment16.
While face-to-face education sessions are a significant component of patient education, nurses in ambulatory settings are increasingly using a range of flexible modes for delivering information. For example, telephone triage can be utilised as a way of assessing potential or actual treatment-related problems or symptoms of patients in their own homes, and can be used to provide appropriate advice or instruction17. Similarly, the use of interactive computer information is becoming more common. In these systems, patients may even have access to their own records with explanation as a further innovative method of patient teaching18. Patients themselves may have access to a wide range of sources for self-education. The oncology nurse can facilitate patients’ use of these sources to complement education provided by health professionals, by assisting them to become critical consumers of the enormous range of information available to the public. For example, patients can now access clinical trial information, detailed information about treatment regimens, and online support groups at will.
Clark19 suggests it is important to encourage patients to communicate with health professionals about the information they may find on the Internet, and to consider how this information relates to the information provided in the treatment setting. In this way, an opportunity is provided to give patients feedback regarding information sources and assist them to interpret information that is relevant to their needs. Clark further suggests that the criteria for evaluating Internet websites is not that different from evaluating written materials. The key points to consider include who stands behind the information, is the information up to date, who sponsors the information, and how patient oriented a particular site may be.
Timing for patient education
One of the most difficult issues associated with patient education is identifying appropriate timing for teaching for each individual patient’s circumstances. In general, most treatment settings have standardised or structured educational and information giving sessions early in the course of treatment. For example, a radiation education program may include a) the provision of written information at the planning appointment; b) the availability of a radiation treatment video which patients can borrow and take home; c) an initial nursing interview at the beginning of treatment to discuss issues relevant to the patient; d) ongoing weekly assessment of interventions; e) ongoing education related to the changing nature of the radiation side effects with cumulative dose; and f) telephone contact post-treatment to monitor progress. It is important to recognise, however, that ongoing assessment, repeated reinforcement, and positive feedback are the keys to imparting appropriate knowledge.
Group education and support programs
Education and support programs such as the Living With Cancer program, the STRETCH program for women who have had breast cancer, Look Good…Feel Better, and others are available for patients through the various state and territory cancer organisations. These programs are an important source of education and information for patients and their significant others, where learning is encouraged in a supportive and friendly environment. They are often used as an important supplement to the individualised patient education strategies described above, and nurses are a key source of referral to these types of programs.
Nurses and health professionals must, as described by Strauss20, “teach the inexperienced”, providing medical and nursing knowledge to non-medical personnel who are often in various degrees of distress, anger and denial. Although cancer treatment knowledge does not guarantee the performance of self-care activities, certainly participation will not occur without treatment knowledge21. Oncology nurses are significant providers of patient education in all areas of oncology practice. Whatever the patient and family education strategies employed by nurses in the ambulatory care setting, the needs of the patient/family, and their readiness to learning and receptiveness to information offered must be considered. The provision of a variety of creative and appropriate teaching tools will assist in the successful education of patients, to promote self-care, and improve outcomes from cancer treatment.
8. E Ream. “Information and education for patients and families.” In N Kearnery, A Richardson, and P DiGiulio. Cancer Nursing Practice: A Textbook for the Specialist Nurse. Churchill Livingstone, London.
15. P Butow, E Brindle, D McConnell, R Boakes and M Tattersall. “Information booklets about cancer: factors influencing patient satisfaction and utilisation.” Patient Education and Counselling, 33 (1998), 129-141.
18. J Pearson, R Jones, A Cawsey, S McGregor, A Barrett, H J Gilmour and J McEwen. “The accessibility of information systems for patients: use of touchscreen information systems by 345 patients with cancer in Scotland.” Proc Amia Symp (1999), 594-598.