Information
and Education Across the Phases of Cancer Care Miriam Adams
T
HE FACT THAT cancerhas becomea highly treatable diseasetranslatesinto more people living with this chronic illness for longer periods of time. The American Cancer Society estimatesthat there are more than 7 million Americans alive today who have a history of cancer, 3 million of whom had a diagnosis 5 or more years ago.’ As with any chronic illness, educationthen becomesa significant part of the treatment plan to allow patients to participate actively in their treatment and cope better with their condition. As consumersof health care services, patients have a right to participate in their own care.* Today, cancer treatment is viewed as a partnership between caregiver and patient, replacing an earlier concept of the patient being the passiverecipient of information from the physician. Attention is paid to the necessityof providing the patient with information in the appropriatelanguageand at appropriate times in the course of the patient’s illness. Blanchard et al3 report that, in a study of hospitalized adult cancer patients, the majority wanted all the information given to them, good or bad. Most patients want to participate in the decision-making processregarding their care and treatment. Researchindicates that cancerpatients may seek information about their diseaseand treatment as a mechanism to gain control of their situation.’ Thus, information seeking can be regarded as a method of coping. Cassileth et al4 studied the relationship between hopefulness and information seeking. Patientswho prefer active involvement in their treatment are significantly more hopeful than are people who do not want to be involved. In addition, this research demonstratedthat patients who want as much information as possible (both good and bad) are significantly more hopeful than those who want only positive or minimal information .4 Cancer patient education represents a major challenge to the health professional, probably more so than patient education with any other chronic disease.Goals related to patient education include the provision of knowledge and facts, the developmentof self-care skills, and the support of Seminars in Oncology Nursing, Vol 7, No 2 (May), 1991: pp 105-l 11
desired attitudes and behaviors.5 When applied to specific cancerpatient situations, theseeducational goals lead to a variety of learning objectives (Table 1). In addition, there are numerous issues related to the nature of cancer that must be considered when selecting educational content. Attention to these issues will help determine the content, timing, and methodsfor teaching cancer patients (Table 2). The content of adult cancer patient education differs across the various phases of cancer care. This article will focus on the information/ education needsof cancer patients during the following five phasesof the disease: (1) diagnosis, (2) treatment, (3) rehabilitation and continuing care, (4) cancersurvivorship/remission, and (5) recurrenceor advanceddisease.Informational needs of family memberswill also be discussed. DIAGNOSTIC PHASE
The cancerexperiencecan be seenas a sequence of related events, proceeding from the first sign or symptomto hospitalization and treatment and then to convalescence and cure or to recurrence and death.6Diagnosis is the first intervention point in that sequence. Patients undergoing diagnostic tests are often fearful and anxious, especially in caseswhere patients themselves discover the symptoms that brought them to the doctor. In thesecases,patients most often suspecta diagnosis of cancer even before diagnostic tests are performed.7The information needsof patients during this crucial phaseare two-pointed. First, patients needinformation about the teststhemselves,and secondly, they needto be informed of the subsequentdiagnosis so that they can begin coping and make needed decisions regarding their treatment. From Adams Associates-Health Communications Consultants, Brattleboro, VT. Miriam Adams, MPH, CHES: Director, Adams Associates. Address reprint requests to Miriam Adams, MPH, CHES, Director, Adams Associates, RR3 Box 5OA, Brattleboro, VT 05301. Copyright 0 1991 by W.B. Saunders Company 0749-208119110702-OOO5$S.OOlO
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Table 1. Goals and Learning Objectives Cancer Patient Education
Goals of Education
of
Examples of Learning Objectives
Providing knowledge and facts
To learn about treatment To learn about resources assistance
Developing skills
To carry out prescribed regimens To minimize side effects
self-care
Encouraging desired attitudes and behavior
options for
To adjust to the course of the disease To achieve a sense of control To maintain social relationships
Two studieson preparing patients for diagnostic testshave focusedon the amount of information to include and the impact of patient education on emotional response.8V9In the first study, a comparison was madebetweendifferencesin patients’ and nurses’ perceptionsof the need for patient education related to barium enema preparation. Nursesgenerally believed patients neededmore information than patients believed was necessary.’ In the secondstudy, patients who were educationally prepared for a gynecologic examination showeda significant increasein positive attitudes.’ These findings point to the need for content clarification between patients and educators. Diagnostic tests should be described in simple language, whether the description is verbal or communicated via some other medium. The following key information should be included: (1) what the test(s) consist of, (2) what preparation is necessary,(3) how the patient will feel, (4) how long the test(s) will last, (5) what side effects, if any, can be expected,and (6) what information the test(s) will provide. “,” Patientsalso needinformation on the health care setting itself: where the tests will be performed, who will administer the tests, and who will interpret the results.” They need some understanding of the sequence of events and the time factors involved. ‘* Once test results have been received indicating cancer, the patient needsto be informed of the diagnosisin order to begin making necessary decisions and coping. The manner in which a resultant diagnosis is communicatedand the subsequent reaction of patient and family establishesa pattern of coping that continues throughout the disease.13 Selection of what information needsto be taught
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during which phase of the disease is a realistic concern. Derdiarian*,14identified the needfor prospective data on the informational needsof newly diagnosedcancer patients. The information needs of patients soon after diagnosis are extensive and can be organized into four major categories: (1) diseaseconcerns (physical survival), (2) personal concerns (psychologic and social survival), (3) family concerns (impact of the diagnosis on the family’s physical and psychologic well-being, including spouseor significant other, children, parents, and siblings), and (4) social concerns(social relationships, including communicating and interacting with friends and peersabout the diagnosisof cancer).* Additional studies are neededto identify which of theseaspectsare critical and in what priority they should be addressed. TREATMENT PHASE
During the treatmentphaseof their disease,cancer patients are required to deal with a multitude of new informational issues, including those relating to the type of cancer they have, extent of disease, typical patterns of growth and spread, types of treatment available and side effects, and cure or control rates. Crosson” suggeststhat in order for patients to make informed treatment choices they must learn the following: 0 Reasonfor the proposedtherapy or modality. 0 How the treatment will affect the cancer. 0 Sequenceof events and timetable. 0 Potential side effects, body alterations, or life style changes and suggestedcoping mechanisms. Table 2. Issues Important in Providing Cancer Patient Education Cancer includes a variety of diseases with different patterns. Cancer is frequently equated with pain, suffering, disfigurement, and death. The outcome of cancer treatment is frequently uncertain, thus disrupting one’s sense of control. Cancer may cause great financial burden related to treatment expense and loss of work time. Cancer treatments are frequently accompanied by severe side effects that patients confuse with disease progression. Cancer treatment may cause major and permanent chanaes in bodilv structure and function.
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0 Prognosis. 0 Continuing care techniques and routine. The treatment phase is the time when patients and family membersneedto know about the availability of secondopinions and how to obtain them. Most patients are concerned about whether their doctor is the best doctor or whether their treatment facility is the best one.‘i Patients also need to know how long decisions and treatments can be delayed and how to schedule treatmentsto minimize disruption of their usual schedules.7 Overall goals during both the diagnostic and treatmentphasesfocus on initiating treatment, decreasing the patient’s anxiety, and gaining the patient’s cooperation with the treatment program.15 Patients and family membersrequire specific information about the individual treatment(s) that have been recommended (eg, surgery, radiation therapy, chemotherapy, or immunotherapy) including ways to adjust their normal routine to the treatment cycle. ‘* In a series of studies on side effects management Doddi6-i9 has demonstrated the value of teachfng patients about expected side effects and related self-careactivities. Resultsshowedthat patients who learned side effect managementtechniques for chemotherapyand for radiation therapy performed more self-care techniques and initiated them sooner than the uninformed patients. Other research has focused on the kind of information neededto reduce patients’ distress. Johnson*’ and Johnsonet a12’have conducteda seriesof studies, some of which have focused on cancer patients’ distressreactions. Resultsshowedthe value of providing information on accurateexpectationsabout the sensationspatients will experience-as compared with information about the technical or procedural aspects of the treatment-in reducing stressassociatedwith noxious procedures.*’ In addition, information on behavioral coping techniques has resulted in reduced amounts of pain medication needed by patients.21 These studies emphasize the need to teach patients about selfcare techniques before related symptoms occur, and to reduce stressduring treatmentsby preparing patients with expected sensationsand behavioral coping techniques. Continued researchto replicate these results will be valuable in expanding and validating the theoretical basis for patient teaching content during the treatment phase.
REHABILITATION AND CONTINUING CARE PHASE
Rehabilitation should begin at the time of diagnosis and should be included as a consistent and integral part of cancercare. Rehabilitation is a process where patients with cancer are assisted to achieve optimal functioning within the limits imposed by their disease.22In addition, it embraces all aspectsof the patient’s life and assistswith the reintegration into family and community lives. ’ ’ With the trend toward shorter hospital stays and the shift of cancertherapiesfrom an inpatient basis to an outpatient basis, (eg, increaseduse of surgical day hospitals), there is a greater need for selfcare information and education. Shorter lengths of stay and new self-caretechniquesthat patients perform at home (eg, Hickman catheter self-care programs) are putting additional pressure on patient education programs in both outpatient and home care settings.23,24 As part of this phaseof patient education, content should focus on community servicesfor counseling, supplies, and other neededsupport. In addition, both hospital- and community-based support groups can be of enormous assistancein helping patients readjust to resuming their work or school, and personal schedules. During the rehabilitation and continuing care phase, patients often need information on pain management,and this information can help reduce the impact of this symptom on quality of life.25 Issuesthat can be included in a discussion of pain managementare when the pain will occur, what it will feel like, how long it will last, and why it is occurring. Patientscan be taught a variety of pain managementtechniques, including effective medication administration, relaxation, imagery, selfhypnosis, and biofeedback.26 CANCER SURVIVORSHIP/REMISSION
PHASE
Cancer survival is an ongoing processthat begins when the initial cancerdiagnosis is made. The information, educational, and social needsof survivors continue throughout their lives.27 The factors that make these needs vary from survivor to survivor are the individual’s coping status, level of understanding, stage in the recovery process, and support network. Mullan2’ suggeststhat both long- and short-term
cancer survivorship presentsa variety of problems of readjustmentand readaptation.Most significant of these are the fear of recurrence, learning to live with compromise, and economic and social shunning . Education can play a major role in the survivor’s readjustment and readaptation to the abovementioned problems. For instance, fear of recurrence is a normal part of the recovery process,and education should provide clear information about the cancer, follow-up needed, and what signs should be considerednormal versusabnormal. For the patient who is learning to live with compromises that come as a part of the cancer treatment (eg, loss of body part), clear and accurate information may help the patient readjust. Patient groups and/or counseling may help the patient with the “anger of compromise syndrome.“28 Economic and social shunning can be addressedby providing information to survivors about employment and insurance discrimination, their rights, and what they can do to protect those rights. Patients who are attempting to rejoin the work force can be educatedas to what problemsthey may face and how those problems can be overcome. It is important that educational interventions be developedand systematicallyapplied so the cancer patient can experience both physical and psychologic healing. Health care providers must take an active role in survivorship educationby addressing survivor’s concerns about recurrence and living with treatment-relatedproblems such aschangesin body image, as well asby making referrals to other community resources. In addition, educational goals for cancer survivors should include information on self-monitoring for signs and symptomsof recurrence or a new malignancy.29A recent publication by the National Cancer Institute is a valuable resourcefor teachingcancerpatients aboutthe issues involved in cancer survivorship. Cancer survivor groups, such as the National Coalition of CancerSurvivors, the M. D . Anderson Network, the American Cancer Society’s rehabilitation and education programs (eg, Reach to Recovery, I Can Cope), and other support programs play a significant role by providing information and assisting patients to cope with the long-term effects of their disease. The Post-TreatmentResource Program,3’ a project of Memorial SloanKettering Cancer Center, fosters discussions on survivorship issuesthrough three modalities: edu-
cation, counseling, and peer support. This 2year-old program helps cancer survivors deal with stress, fear of recurrence, changing relationships, concerns about sexuality and fertility, and insurance and employment issues. RECURRENCE OR ADVANCED DISEASE PHASE
Of all the phases, recurrence or advanced diseasemay be the most difficult for both patients and families. Holland3* notes that the adjustmentsnecessaryafter learning of a recurrenceare similar to those experienced at the time of diagnosis. The recurrence requires a new level of adaptation to deal with the idea that the treatment has failed. Acute physical problems (restlessness,fever, infection, pain) often impact on the learning ability and information retention of patients who have had a recurrenceof their cancer or have advanceddisease.Thesepatients also experiencea wide variety of psychological problems including anger, grief, fear, and uncertainty. Equally important is the fact that both patients and family members must deal with the issue of dying.‘* At this point in the diseaseprocess, education shifts from the patient to the family. Health professionalsmust provide families with practical information about feeding, giving medications, and recognizing emergencies, as well as information on community resources. In addition, many patients and families express an interest in learning about other treatment options including the use of investigational drugs or other experimental protocols.‘* When patients reach a point where palliative rather than curative goals are appropriate, information must be provided that will make the final transition as comfortable as possible. Families clearly indicate their preferencesfor patient-centered information and want to focus attention away from their own emotional needs.33The most requested information from families pertains to the patient’s condition and comfort measures.Thus, caregivers must openly share information with family members while recognizing that the family’s primary concern is with the dying patient. During this phase the family may need more assistancein caring for the patient and more specific information about death.” Simple instructions about what to expect physically and emotionally during the dying process may help both the
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patient and family members. Information about hospice programs and other types of community support may also be appropriate at this time. INFORMATIONAL NEEDS OF FAMILY MEMBERS, CHILDREN, AND SIBLINGS
Family Members
Cancerdisrupts the lives of family membersjust as it does the patient’s and is a threat to the integrity and functioning of the entire family system.i3 Health professionalsrecognize the needto include the family in discussions of diagnosis and treatment. Including the family in patient teaching sessions increasesthe chancesthat both the patient and family will understandand follow instructions, and the sessions also provide opportunities for family membersto ask questions.lo In a descriptive study by Tringali,34 the cognitive, emotional, and physical needsof families of cancerpatients were identified during three phases of illness (diagnosisand treatment,recurrence,and follow-up). Analysis of the findings indicated that in all three phases,cognitive needswere perceived as most important. To have questions answered honestly was the highest ranked informational need. Other information issuesthat families rated as important were related to knowing the facts about the disease,the treatment, and when to expect symptoms to occur. Families also wanted to be told the facts about the patient’s condition. This study further emphasizesthat an understandingof the disease, the treatment protocol, and the intendedoutcomesallows family membersto participate in decision making more effectively. Children
When considering the effects of cancer on the family, the caregiver must include the children of cancerpatients. Whatevertheir level of knowledge or ability to understand,children are awarewhen a tremendous change has occurred in the family unit. I3 When helping children to cope with a diagnosis of cancer in the family, caregivers must be sensitive to the children’s developmentalunderstanding of the disease.Children’s informational needsare relative to their age.35 Although infants have no understandingof an illness, they may react to the behavior and stressof both family and caregivers. Toddlers need simplistic information as to why the
parent is ill or absent and need reassurancethat someonewill care for them during this time. F’reschoolers should be told in the simplest terms about the diagnosis and how the family member will be treated. School-aged children need information about the diseasein greater detail, including reassurancethat the family member is receiving appropriate care. Finally, adolescentsshould be provided information and included in family discussions with physicians, nurses, and other membersof the health care team. Siblings
Educational interventions are necessaryfor siblings of cancer patients in order to facilitate their adaptation and coping. A deliberate and wellplanned approachshould be developedto teach the healthy siblings about the disease,treatment, side effects, and prognosis.36Group experience with other siblings of children with cancer can also be beneficial. In a study by Kramer,37the meaning and impact of what it was like to live with a brother or sister who has cancer was explored. The healthy sibling in the study identified several factors that they felt were important to help them adaptto and cope with their brother or sister’s illness, These factors included receiving information about the disease,the treatment, and the child’s condition; maintaining open and honest family communications; and being actively involved in the ill child’s care. Siblings should be told as much about the child’s illness asthey are able to comprehend.i3To alleviate fear, siblings should be told that the diseaseis not contagious, the cause of cancer is unknown, and nothing a family did causedit. Information given to siblings may be provided by the members of the health care team, parents, or a combination of both. AN INTERDISCIPLINARY APPROACH TO PATIENT EDUCATION
The cancerpatient interfaceswith a wide variety of health professionals ranging from those who provide direct patient care (physicians and nurses) to those responsible for other patient programs, including mental health workers, social workers, health educators,patient educators, physical therapists, dietitians, pharmacists, voluntary agency staff, and patient volunteers. Each of theseprovid-
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ers has a role to play in the process of patient education, and there are numerous opportunities for collaboration among these groups. The Oncology Nursing Society’s commitmentto the value of patient education is illustrated in the Standards of Oncology Nursing Practice3* and the Standards of Oncology Education: PatientlFamily and Public.39 The assessment,insight, and prob-
lem-solving skills of nurses make them uniquely qualified to provide leadership roles in this area. SUMMARY
Providing information to the cancer patient, is important but it is only one facet of patient education. Cancer patients also need to be taught new skills and shown new ways to cope. Patients who
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are not only informed, but are also educated and have more knowledge about their disease, are more likely to cooperatewith treatment regimens and experience less stressand anxiety. l1 One approachto identifying the content of cancer patient education is to focus on the various phasesof cancer care. This approach provides a way for the patient and family to learn those aspects that are critical to coping with and adapting to the impact of the diseaseand its treatment. A number of researchershave begun to build the knowledge baseimportant in identifying the appropriate educational content, methods for teaching, and approachesto evaluating teaching effectiveness. Future studies will continue to provide the scientific foundation for this most important aspect of cancer care.
REFERENCES 1. American Cancer Society: Cancer Facts and Figures1991. Atlanta, GA, American Cancer Society, 1991 2. Derdiarian AK: Informational needs of recently diagnosedcancerpatients: A theoretical framework. Part I. Cancer Nuts 10:107-115, 1987 3. Blanchard CG, Labrecque MS, Ruckdeschel JC, et al: Information and decision-making preferencesof hospitalized adult cancer patients. Sot Sci Med 27:1139-l 145, 1988 4. CassilethB, ZuIkis R, Sutton-SmithK, et al: Information and participation preferencesamong cancer patients. Ann Intern Med 92:832-836, 1980 5. Lindeman CA: Patient education:Part II. AMU Rev Nurs Res 6:199-212, 1988 6. Bard M: The price of survival for cancer victims, in StraussAL (ed): Where Medicine Fails. Chicago, IL, Aldine Publishing, 1970, pp 99-l 10 7. Blumberg B: Adult Patient Education in Cancer (NIH Pub1No. 83-2601). Bethesda,MD, US Department of Health & Human Services, 1983 8. Schuster P, Jones S: Preparing the patient for barium enema: A comparison to nursing and patient opinions. J Adv Nurs 7:523-527, 1982 9. Latta W, WiesmannE: Effects of an educationalgynecological examination on women’s attitudes. J Obstet Gynecol Neonatal Nurs 10:242-245, 1981 10. Villejo L: Cancer patient education throughout the stages of disease: Teaching strategies and resources. Qncol Nurs Forum (in press) 11. CrossonK: Cancerpatient education:What, where, and by whom? Health Educ Q 10:19-29, 1984 (suppl) 12. Morra ME: Developing strategiesfor patient education in cancer, in Baird S, McCorkle R, Grant M (eds): Cancer Nursing: A ComprehensiveTextbook. Philadelphia, PA, Saunders 1991, pp 944-956 13. Blumberg B, Flaherty M, Lewis J: Coping With Cancer: A Resource for the Health Professional (NIH Pub1 No. 802080). US Department of Health & Human Services, 1980
14. Derdiarian AK: Informational needs of recently diagnosedcancer patients. Nurs Res 35:276-281, 1986 15. Watson PM: Patient education: The adult with cancer. Nurs Clin North Am 17:739-752, 1982 16. Dodd MJ: Assessingpatient self-care for side effects of cancer chemotherapy-PartI. Cancer Nurs 5447-451, 1982 17. Dodd MJ: Self-carefor side effects in cancerchemotherapy: An assessmentof nursing interventions-Part II. Cancer Nurs 6163-67,1983 18. Dodd MJ: Patternsof self-carein cancerpatients receiving radiation therapy. Oncol Nurs Forum 10:23-27, 1984 19. Dodd MJ: Patterns of self-care in patients with breast cancer. West J Nurs Res 10:7-24, 1988 20. JohnsonJ: Effects of structuring patients’ expectations on their reactionsto threateningevents. Nurs Res 21:499-504, 1972 21. JohnsonJ, Christman N, Stitts C: Personal control interventions: Short and long term effects on surgical patients. Res Nurs and Health 8:131-145, 1985 22. Mayer D, O’Connor L: Rehabilitation of persons with cancer:An ONS position statement.Oncol Nurs Forum 16:433, 1989 23. Villejo L, Flynn V, Klucharich S, et al: Strategies for cancer patient education: Overcoming barriers. Cancer Bull 40:365-369, 1988 24. RedmanBK: Strengtheningpatient education programs in oncology. J PsychosocQncol 3:75-81, Winter 1985/1986 25. Ferrell BR, Wisdom C, Wenzl C, et al: Quality of life as an outcome variable in pain research. Cancer 63:2321-2327, 1989 26. McCaffery M, BeebeA: Pain: Clinical Manual for Nursing Practice. St. Louis, MO, Mosby, 1989 27. GarnbosiJR, Uheich S: Intervention program recognizing survivors. Oncol Nurs Forum 17:215-219, 1990 28. Mullan F: Re-entry: The educationalneedsof the cancer survivor. Health Educ Q 10:88-94, 1984 (suppl) 29. RoseMA: Health promotion and risk prevention: Appli-
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cations for cancer survivors. Oncol Nurs Forum 16:335-340, 1989 30. National Cancer Institute: Facing Forward: A Guide for Cancer Survivors (NIH Pub1 No. 90-2424). Bethesda, MD, US Department of Health & Human Services, 1990 31. Memorial Sloan-Kettering Cancer Center: PostTreatment Resource Program: A boom for patients after treatment. Center News, October 1990 32. Holland JC: Clinical course of cancer, in Holland JC, Rowland JH (eds): Handbook of Psychooncology. New York, NY, Oxford University Press, 1989, pp 75-100 33. Hull MM: Family needs and supportive nursing behaviors during terminal cancer: A review. Oncol Nurs Forum 16:787-792, 1989
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34. Tringali CA: The needs of family members of cancer patients. Oncol Nurs Forum 13:65-69, 1986 35. Hanigan MJ: Helping children deal with a cancer diagnosis in the family. Oncol Nurs Forum 16:431, 1989 36. Walker C: Siblings of children with cancer. Oncol Nurs Forum 17:355-360, 1990 37. Kramer RF: Living with childhood cancer: Impact on healthy siblings. Oncol Nuts Forum 11:44-5 1, 1984 38. Oncology Nursing Society and American Nurses’ Association: Standards of Oncology Nursing Practice. Kansas City, MO, American Nurses’ Association, 1987 39. Oncology Nursing Society: Standards of Oncology Education: Patient/Family and Public. Pittsburgh. PA, Oncology Nursing Society, 1989
and Education Across the Phases of Cancer Care Miriam Adams
T
HE FACT THAT cancerhas becomea highly treatable diseasetranslatesinto more people living with this chronic illness for longer periods of time. The American Cancer Society estimatesthat there are more than 7 million Americans alive today who have a history of cancer, 3 million of whom had a diagnosis 5 or more years ago.’ As with any chronic illness, educationthen becomesa significant part of the treatment plan to allow patients to participate actively in their treatment and cope better with their condition. As consumersof health care services, patients have a right to participate in their own care.* Today, cancer treatment is viewed as a partnership between caregiver and patient, replacing an earlier concept of the patient being the passiverecipient of information from the physician. Attention is paid to the necessityof providing the patient with information in the appropriatelanguageand at appropriate times in the course of the patient’s illness. Blanchard et al3 report that, in a study of hospitalized adult cancer patients, the majority wanted all the information given to them, good or bad. Most patients want to participate in the decision-making processregarding their care and treatment. Researchindicates that cancerpatients may seek information about their diseaseand treatment as a mechanism to gain control of their situation.’ Thus, information seeking can be regarded as a method of coping. Cassileth et al4 studied the relationship between hopefulness and information seeking. Patientswho prefer active involvement in their treatment are significantly more hopeful than are people who do not want to be involved. In addition, this research demonstratedthat patients who want as much information as possible (both good and bad) are significantly more hopeful than those who want only positive or minimal information .4 Cancer patient education represents a major challenge to the health professional, probably more so than patient education with any other chronic disease.Goals related to patient education include the provision of knowledge and facts, the developmentof self-care skills, and the support of Seminars in Oncology Nursing, Vol 7, No 2 (May), 1991: pp 105-l 11
desired attitudes and behaviors.5 When applied to specific cancerpatient situations, theseeducational goals lead to a variety of learning objectives (Table 1). In addition, there are numerous issues related to the nature of cancer that must be considered when selecting educational content. Attention to these issues will help determine the content, timing, and methodsfor teaching cancer patients (Table 2). The content of adult cancer patient education differs across the various phases of cancer care. This article will focus on the information/ education needsof cancer patients during the following five phasesof the disease: (1) diagnosis, (2) treatment, (3) rehabilitation and continuing care, (4) cancersurvivorship/remission, and (5) recurrenceor advanceddisease.Informational needs of family memberswill also be discussed. DIAGNOSTIC PHASE
The cancerexperiencecan be seenas a sequence of related events, proceeding from the first sign or symptomto hospitalization and treatment and then to convalescence and cure or to recurrence and death.6Diagnosis is the first intervention point in that sequence. Patients undergoing diagnostic tests are often fearful and anxious, especially in caseswhere patients themselves discover the symptoms that brought them to the doctor. In thesecases,patients most often suspecta diagnosis of cancer even before diagnostic tests are performed.7The information needsof patients during this crucial phaseare two-pointed. First, patients needinformation about the teststhemselves,and secondly, they needto be informed of the subsequentdiagnosis so that they can begin coping and make needed decisions regarding their treatment. From Adams Associates-Health Communications Consultants, Brattleboro, VT. Miriam Adams, MPH, CHES: Director, Adams Associates. Address reprint requests to Miriam Adams, MPH, CHES, Director, Adams Associates, RR3 Box 5OA, Brattleboro, VT 05301. Copyright 0 1991 by W.B. Saunders Company 0749-208119110702-OOO5$S.OOlO
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Table 1. Goals and Learning Objectives Cancer Patient Education
Goals of Education
of
Examples of Learning Objectives
Providing knowledge and facts
To learn about treatment To learn about resources assistance
Developing skills
To carry out prescribed regimens To minimize side effects
self-care
Encouraging desired attitudes and behavior
options for
To adjust to the course of the disease To achieve a sense of control To maintain social relationships
Two studieson preparing patients for diagnostic testshave focusedon the amount of information to include and the impact of patient education on emotional response.8V9In the first study, a comparison was madebetweendifferencesin patients’ and nurses’ perceptionsof the need for patient education related to barium enema preparation. Nursesgenerally believed patients neededmore information than patients believed was necessary.’ In the secondstudy, patients who were educationally prepared for a gynecologic examination showeda significant increasein positive attitudes.’ These findings point to the need for content clarification between patients and educators. Diagnostic tests should be described in simple language, whether the description is verbal or communicated via some other medium. The following key information should be included: (1) what the test(s) consist of, (2) what preparation is necessary,(3) how the patient will feel, (4) how long the test(s) will last, (5) what side effects, if any, can be expected,and (6) what information the test(s) will provide. “,” Patientsalso needinformation on the health care setting itself: where the tests will be performed, who will administer the tests, and who will interpret the results.” They need some understanding of the sequence of events and the time factors involved. ‘* Once test results have been received indicating cancer, the patient needsto be informed of the diagnosisin order to begin making necessary decisions and coping. The manner in which a resultant diagnosis is communicatedand the subsequent reaction of patient and family establishesa pattern of coping that continues throughout the disease.13 Selection of what information needsto be taught
ADAMS
during which phase of the disease is a realistic concern. Derdiarian*,14identified the needfor prospective data on the informational needsof newly diagnosedcancer patients. The information needs of patients soon after diagnosis are extensive and can be organized into four major categories: (1) diseaseconcerns (physical survival), (2) personal concerns (psychologic and social survival), (3) family concerns (impact of the diagnosis on the family’s physical and psychologic well-being, including spouseor significant other, children, parents, and siblings), and (4) social concerns(social relationships, including communicating and interacting with friends and peersabout the diagnosisof cancer).* Additional studies are neededto identify which of theseaspectsare critical and in what priority they should be addressed. TREATMENT PHASE
During the treatmentphaseof their disease,cancer patients are required to deal with a multitude of new informational issues, including those relating to the type of cancer they have, extent of disease, typical patterns of growth and spread, types of treatment available and side effects, and cure or control rates. Crosson” suggeststhat in order for patients to make informed treatment choices they must learn the following: 0 Reasonfor the proposedtherapy or modality. 0 How the treatment will affect the cancer. 0 Sequenceof events and timetable. 0 Potential side effects, body alterations, or life style changes and suggestedcoping mechanisms. Table 2. Issues Important in Providing Cancer Patient Education Cancer includes a variety of diseases with different patterns. Cancer is frequently equated with pain, suffering, disfigurement, and death. The outcome of cancer treatment is frequently uncertain, thus disrupting one’s sense of control. Cancer may cause great financial burden related to treatment expense and loss of work time. Cancer treatments are frequently accompanied by severe side effects that patients confuse with disease progression. Cancer treatment may cause major and permanent chanaes in bodilv structure and function.
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0 Prognosis. 0 Continuing care techniques and routine. The treatment phase is the time when patients and family membersneedto know about the availability of secondopinions and how to obtain them. Most patients are concerned about whether their doctor is the best doctor or whether their treatment facility is the best one.‘i Patients also need to know how long decisions and treatments can be delayed and how to schedule treatmentsto minimize disruption of their usual schedules.7 Overall goals during both the diagnostic and treatmentphasesfocus on initiating treatment, decreasing the patient’s anxiety, and gaining the patient’s cooperation with the treatment program.15 Patients and family membersrequire specific information about the individual treatment(s) that have been recommended (eg, surgery, radiation therapy, chemotherapy, or immunotherapy) including ways to adjust their normal routine to the treatment cycle. ‘* In a series of studies on side effects management Doddi6-i9 has demonstrated the value of teachfng patients about expected side effects and related self-careactivities. Resultsshowedthat patients who learned side effect managementtechniques for chemotherapyand for radiation therapy performed more self-care techniques and initiated them sooner than the uninformed patients. Other research has focused on the kind of information neededto reduce patients’ distress. Johnson*’ and Johnsonet a12’have conducteda seriesof studies, some of which have focused on cancer patients’ distressreactions. Resultsshowedthe value of providing information on accurateexpectationsabout the sensationspatients will experience-as compared with information about the technical or procedural aspects of the treatment-in reducing stressassociatedwith noxious procedures.*’ In addition, information on behavioral coping techniques has resulted in reduced amounts of pain medication needed by patients.21 These studies emphasize the need to teach patients about selfcare techniques before related symptoms occur, and to reduce stressduring treatmentsby preparing patients with expected sensationsand behavioral coping techniques. Continued researchto replicate these results will be valuable in expanding and validating the theoretical basis for patient teaching content during the treatment phase.
REHABILITATION AND CONTINUING CARE PHASE
Rehabilitation should begin at the time of diagnosis and should be included as a consistent and integral part of cancercare. Rehabilitation is a process where patients with cancer are assisted to achieve optimal functioning within the limits imposed by their disease.22In addition, it embraces all aspectsof the patient’s life and assistswith the reintegration into family and community lives. ’ ’ With the trend toward shorter hospital stays and the shift of cancertherapiesfrom an inpatient basis to an outpatient basis, (eg, increaseduse of surgical day hospitals), there is a greater need for selfcare information and education. Shorter lengths of stay and new self-caretechniquesthat patients perform at home (eg, Hickman catheter self-care programs) are putting additional pressure on patient education programs in both outpatient and home care settings.23,24 As part of this phaseof patient education, content should focus on community servicesfor counseling, supplies, and other neededsupport. In addition, both hospital- and community-based support groups can be of enormous assistancein helping patients readjust to resuming their work or school, and personal schedules. During the rehabilitation and continuing care phase, patients often need information on pain management,and this information can help reduce the impact of this symptom on quality of life.25 Issuesthat can be included in a discussion of pain managementare when the pain will occur, what it will feel like, how long it will last, and why it is occurring. Patientscan be taught a variety of pain managementtechniques, including effective medication administration, relaxation, imagery, selfhypnosis, and biofeedback.26 CANCER SURVIVORSHIP/REMISSION
PHASE
Cancer survival is an ongoing processthat begins when the initial cancerdiagnosis is made. The information, educational, and social needsof survivors continue throughout their lives.27 The factors that make these needs vary from survivor to survivor are the individual’s coping status, level of understanding, stage in the recovery process, and support network. Mullan2’ suggeststhat both long- and short-term
cancer survivorship presentsa variety of problems of readjustmentand readaptation.Most significant of these are the fear of recurrence, learning to live with compromise, and economic and social shunning . Education can play a major role in the survivor’s readjustment and readaptation to the abovementioned problems. For instance, fear of recurrence is a normal part of the recovery process,and education should provide clear information about the cancer, follow-up needed, and what signs should be considerednormal versusabnormal. For the patient who is learning to live with compromises that come as a part of the cancer treatment (eg, loss of body part), clear and accurate information may help the patient readjust. Patient groups and/or counseling may help the patient with the “anger of compromise syndrome.“28 Economic and social shunning can be addressedby providing information to survivors about employment and insurance discrimination, their rights, and what they can do to protect those rights. Patients who are attempting to rejoin the work force can be educatedas to what problemsthey may face and how those problems can be overcome. It is important that educational interventions be developedand systematicallyapplied so the cancer patient can experience both physical and psychologic healing. Health care providers must take an active role in survivorship educationby addressing survivor’s concerns about recurrence and living with treatment-relatedproblems such aschangesin body image, as well asby making referrals to other community resources. In addition, educational goals for cancer survivors should include information on self-monitoring for signs and symptomsof recurrence or a new malignancy.29A recent publication by the National Cancer Institute is a valuable resourcefor teachingcancerpatients aboutthe issues involved in cancer survivorship. Cancer survivor groups, such as the National Coalition of CancerSurvivors, the M. D . Anderson Network, the American Cancer Society’s rehabilitation and education programs (eg, Reach to Recovery, I Can Cope), and other support programs play a significant role by providing information and assisting patients to cope with the long-term effects of their disease. The Post-TreatmentResource Program,3’ a project of Memorial SloanKettering Cancer Center, fosters discussions on survivorship issuesthrough three modalities: edu-
cation, counseling, and peer support. This 2year-old program helps cancer survivors deal with stress, fear of recurrence, changing relationships, concerns about sexuality and fertility, and insurance and employment issues. RECURRENCE OR ADVANCED DISEASE PHASE
Of all the phases, recurrence or advanced diseasemay be the most difficult for both patients and families. Holland3* notes that the adjustmentsnecessaryafter learning of a recurrenceare similar to those experienced at the time of diagnosis. The recurrence requires a new level of adaptation to deal with the idea that the treatment has failed. Acute physical problems (restlessness,fever, infection, pain) often impact on the learning ability and information retention of patients who have had a recurrenceof their cancer or have advanceddisease.Thesepatients also experiencea wide variety of psychological problems including anger, grief, fear, and uncertainty. Equally important is the fact that both patients and family members must deal with the issue of dying.‘* At this point in the diseaseprocess, education shifts from the patient to the family. Health professionalsmust provide families with practical information about feeding, giving medications, and recognizing emergencies, as well as information on community resources. In addition, many patients and families express an interest in learning about other treatment options including the use of investigational drugs or other experimental protocols.‘* When patients reach a point where palliative rather than curative goals are appropriate, information must be provided that will make the final transition as comfortable as possible. Families clearly indicate their preferencesfor patient-centered information and want to focus attention away from their own emotional needs.33The most requested information from families pertains to the patient’s condition and comfort measures.Thus, caregivers must openly share information with family members while recognizing that the family’s primary concern is with the dying patient. During this phase the family may need more assistancein caring for the patient and more specific information about death.” Simple instructions about what to expect physically and emotionally during the dying process may help both the
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INFORMATION/EDUCATION ACROSS CANCER PHASES
patient and family members. Information about hospice programs and other types of community support may also be appropriate at this time. INFORMATIONAL NEEDS OF FAMILY MEMBERS, CHILDREN, AND SIBLINGS
Family Members
Cancerdisrupts the lives of family membersjust as it does the patient’s and is a threat to the integrity and functioning of the entire family system.i3 Health professionalsrecognize the needto include the family in discussions of diagnosis and treatment. Including the family in patient teaching sessions increasesthe chancesthat both the patient and family will understandand follow instructions, and the sessions also provide opportunities for family membersto ask questions.lo In a descriptive study by Tringali,34 the cognitive, emotional, and physical needsof families of cancerpatients were identified during three phases of illness (diagnosisand treatment,recurrence,and follow-up). Analysis of the findings indicated that in all three phases,cognitive needswere perceived as most important. To have questions answered honestly was the highest ranked informational need. Other information issuesthat families rated as important were related to knowing the facts about the disease,the treatment, and when to expect symptoms to occur. Families also wanted to be told the facts about the patient’s condition. This study further emphasizesthat an understandingof the disease, the treatment protocol, and the intendedoutcomesallows family membersto participate in decision making more effectively. Children
When considering the effects of cancer on the family, the caregiver must include the children of cancerpatients. Whatevertheir level of knowledge or ability to understand,children are awarewhen a tremendous change has occurred in the family unit. I3 When helping children to cope with a diagnosis of cancer in the family, caregivers must be sensitive to the children’s developmentalunderstanding of the disease.Children’s informational needsare relative to their age.35 Although infants have no understandingof an illness, they may react to the behavior and stressof both family and caregivers. Toddlers need simplistic information as to why the
parent is ill or absent and need reassurancethat someonewill care for them during this time. F’reschoolers should be told in the simplest terms about the diagnosis and how the family member will be treated. School-aged children need information about the diseasein greater detail, including reassurancethat the family member is receiving appropriate care. Finally, adolescentsshould be provided information and included in family discussions with physicians, nurses, and other membersof the health care team. Siblings
Educational interventions are necessaryfor siblings of cancer patients in order to facilitate their adaptation and coping. A deliberate and wellplanned approachshould be developedto teach the healthy siblings about the disease,treatment, side effects, and prognosis.36Group experience with other siblings of children with cancer can also be beneficial. In a study by Kramer,37the meaning and impact of what it was like to live with a brother or sister who has cancer was explored. The healthy sibling in the study identified several factors that they felt were important to help them adaptto and cope with their brother or sister’s illness, These factors included receiving information about the disease,the treatment, and the child’s condition; maintaining open and honest family communications; and being actively involved in the ill child’s care. Siblings should be told as much about the child’s illness asthey are able to comprehend.i3To alleviate fear, siblings should be told that the diseaseis not contagious, the cause of cancer is unknown, and nothing a family did causedit. Information given to siblings may be provided by the members of the health care team, parents, or a combination of both. AN INTERDISCIPLINARY APPROACH TO PATIENT EDUCATION
The cancerpatient interfaceswith a wide variety of health professionals ranging from those who provide direct patient care (physicians and nurses) to those responsible for other patient programs, including mental health workers, social workers, health educators,patient educators, physical therapists, dietitians, pharmacists, voluntary agency staff, and patient volunteers. Each of theseprovid-
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ers has a role to play in the process of patient education, and there are numerous opportunities for collaboration among these groups. The Oncology Nursing Society’s commitmentto the value of patient education is illustrated in the Standards of Oncology Nursing Practice3* and the Standards of Oncology Education: PatientlFamily and Public.39 The assessment,insight, and prob-
lem-solving skills of nurses make them uniquely qualified to provide leadership roles in this area. SUMMARY
Providing information to the cancer patient, is important but it is only one facet of patient education. Cancer patients also need to be taught new skills and shown new ways to cope. Patients who
ADAMS
are not only informed, but are also educated and have more knowledge about their disease, are more likely to cooperatewith treatment regimens and experience less stressand anxiety. l1 One approachto identifying the content of cancer patient education is to focus on the various phasesof cancer care. This approach provides a way for the patient and family to learn those aspects that are critical to coping with and adapting to the impact of the diseaseand its treatment. A number of researchershave begun to build the knowledge baseimportant in identifying the appropriate educational content, methods for teaching, and approachesto evaluating teaching effectiveness. Future studies will continue to provide the scientific foundation for this most important aspect of cancer care.
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14. Derdiarian AK: Informational needs of recently diagnosedcancer patients. Nurs Res 35:276-281, 1986 15. Watson PM: Patient education: The adult with cancer. Nurs Clin North Am 17:739-752, 1982 16. Dodd MJ: Assessingpatient self-care for side effects of cancer chemotherapy-PartI. Cancer Nurs 5447-451, 1982 17. Dodd MJ: Self-carefor side effects in cancerchemotherapy: An assessmentof nursing interventions-Part II. Cancer Nurs 6163-67,1983 18. Dodd MJ: Patternsof self-carein cancerpatients receiving radiation therapy. Oncol Nurs Forum 10:23-27, 1984 19. Dodd MJ: Patterns of self-care in patients with breast cancer. West J Nurs Res 10:7-24, 1988 20. JohnsonJ: Effects of structuring patients’ expectations on their reactionsto threateningevents. Nurs Res 21:499-504, 1972 21. JohnsonJ, Christman N, Stitts C: Personal control interventions: Short and long term effects on surgical patients. Res Nurs and Health 8:131-145, 1985 22. Mayer D, O’Connor L: Rehabilitation of persons with cancer:An ONS position statement.Oncol Nurs Forum 16:433, 1989 23. Villejo L, Flynn V, Klucharich S, et al: Strategies for cancer patient education: Overcoming barriers. Cancer Bull 40:365-369, 1988 24. RedmanBK: Strengtheningpatient education programs in oncology. J PsychosocQncol 3:75-81, Winter 1985/1986 25. Ferrell BR, Wisdom C, Wenzl C, et al: Quality of life as an outcome variable in pain research. Cancer 63:2321-2327, 1989 26. McCaffery M, BeebeA: Pain: Clinical Manual for Nursing Practice. St. Louis, MO, Mosby, 1989 27. GarnbosiJR, Uheich S: Intervention program recognizing survivors. Oncol Nurs Forum 17:215-219, 1990 28. Mullan F: Re-entry: The educationalneedsof the cancer survivor. Health Educ Q 10:88-94, 1984 (suppl) 29. RoseMA: Health promotion and risk prevention: Appli-
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34. Tringali CA: The needs of family members of cancer patients. Oncol Nurs Forum 13:65-69, 1986 35. Hanigan MJ: Helping children deal with a cancer diagnosis in the family. Oncol Nurs Forum 16:431, 1989 36. Walker C: Siblings of children with cancer. Oncol Nurs Forum 17:355-360, 1990 37. Kramer RF: Living with childhood cancer: Impact on healthy siblings. Oncol Nuts Forum 11:44-5 1, 1984 38. Oncology Nursing Society and American Nurses’ Association: Standards of Oncology Nursing Practice. Kansas City, MO, American Nurses’ Association, 1987 39. Oncology Nursing Society: Standards of Oncology Education: Patient/Family and Public. Pittsburgh. PA, Oncology Nursing Society, 1989
