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THE CHALLENGE TO THE FAMILY

By Gail Price

For thousands of patients and families multiple sclerosis has become an integral part of daily life, and their efforts to cope must be continuous.

Since MS usually strikes between the ages of 20 to 40, the patient often carries heavy responsibilities within the family unit. He or she is often the father or mother of young or teenage children, the breadwinner. Or the patient may be a college student, or a bride or groom, or an almost independent young adult.

The diagnosis of multiple sclerosis is usually made in a general hospital setting and communicated by a physician to the family. Usually, the responsibility for teaching rests with the nurse, whether in an acute care or long-term facility, doctor's office, or community health agency.

The attitude of the teacher is always a key element. How the initial information is conveyed is a strong determinant of family reaction in the present and adjustments in the future. Health professionals have in the past viewed multiple sclerosis as universally devastating and hopeless. Most of the patients they had seen were the most severely disabled, those that needed hospital or nursing home care, but who constitute only about one-third of all MS patients. Many nurses never have professional contact with the other two-thirds who are only slightly to moderately affected. This larger group is often fully functional and requires little or no intensive treatment. Family teaching should therefore include such positive facts, and these can honestly be presented in a positive and hopeful manner.

The family's reaction to a diagnosis of multiple sclerosis can be as variable as the disease itself. Obviously, before any family teaching is possible, there has to be at least some acceptance of the diagnosis on the part of both patient and family. If the patient denies the diagnosis and refuses to allow the family to be told, little can be done until this is changed.

In family teaching, certain principles should govern the nurse's efforts.

One must acknowlege that each family is separate and distinct; no two are exactly the same. In some, the emergence of MS may tear apart the very fibers of family relationships. In others, it may bring a closeness and purpose that was previously missing.

Each family needs to be viewed as one that happens to have a member with multiple sclerosis, never as an MS family. Marital, child-rearing, or financial problems may well have existed before multiple sclerosis entered the picture. If MS is allowed to overshadow all else, it may destroy an already burdened family. The disease must be kept in perspective for the sake of all involved.

The period immediately following the family's awareness of a final diagnosis is generally an intense emotional experience. Attempts to teach at this point are useless and often counterproductive. The words "multiple scerosis" in connection with a member of the family often blur all information that follows. It is wise to allow some time to pass so that the family will not be overwhelmed. The amount of time needed will vary, and the nurse should be sensitive to the reactions of the person being spoken to for indications of readiness to accept and absorb information.

The family members being taught will generally be the spouse or parents, depending on the individual situation. The level of comprehension of the significant person determines the depth of information to be given. All facts should be explained in language understandable to the family.

Even after the initial shock has subsided, teaching should be brief and simple. In any teaching session, time for questions should be allowed, because this is one of the best barometers of the person's concerns and acceptance.

Of course, any family teaching program will be contingent upon the condition of the patient. If a patient requires total care at home, the family might need many hours of instruction. Others, however, may need a minimal amount of this training. Whatever the physical requirements of the patient, the information falls into three basic categories:

1. Facts about the disease itself
2. Health education and nursing procedures
3. Role of the family.

Upon hearing the diagnosis, most families will immediately ask, "What is it?" Many people have heard of multiple sclerosis, some have not, but most are unfamiliar with its actions and effects. Many mispronounce the words and confuse MS with such other diseases as muscular dystrophy or amyotrophic lateral sclerosis.

The next questions will probably be: "How did he/she get it? Is it contagious? Hereditary? Fatal?" Answers should be carefully explained and information given on the possibility of remissions and the possible precipitating factors of exacerbations. The fact that MS affects each person very differently should be stressed.

The educational plan for the family should include the availability of treatments for some of the symptoms if and when they occur, the chance of fatigue requiring modification of certain physical activities in some patients, the massive research effort being made to find answers to the disease, the location of the nearest chapter of the National Multiple Sclerosis Society, and step-by-step methods of managing the disease, such as maintenance of good health habits, proper nutrition, early treatment of infection, therapies, and so forth.

Most important, the essential theme throughout must be the absolute necessity for maintaining the patient at his or her optimum functional level. Overprotection is second only to callous neglect as the most destructive method of managing MS.

All health education must include full explanations of what is meant by "proper nutrition" and "good health habits." Professionals often assume that the basics of these are fully understood by the general public. As the nurse stresses the importance of these, the family nods, implying understanding, but they often walk away, unfamiliar with what constitutes a balanced diet or a fitness program. If there is any doubt about their understanding, time should be taken for detailed discussion.

The family should understand the need for MS patients to maintain maximum physical condition, but they should also realize that patients must make many decisions for themselves and be responsible for implementing their own care, if possible. With too much emphasis on, "Let me do that for vou," or "You must get eight hours of sleep a night," a childlike dependence can be created. Multiple sclerosis patients need not be invalids.

When instruction is given in procedures for care, the professional in charge should plan to begin with the most basic matters. People never before confronted with the need may be unable to figure out how to give a bed bath, be unaware of preventive measures for bed sores, or even be unable to read a thermometer. More complicated devices, if needed, will require special attention. Wheelchairs, walkers, catheters, and other aids are often foreign, embarrassing, and frightening. Much distress and fear can be avoided if these are fully understood by family members.

A catheter may be horrifying to those who only see it as a tube emanating from the body, but by understanding the anatomy and physiology of the urinary svstem and the rationale for care of and precautions to be taken with a catheter, families can accept such devices.

The supportive role of the family may be the most crucial to be stressed and the one that usually receives the least attention. In any long-term situation, such as that presented by multiple sclerosis, the physical and emotional toll on the family far exceeds that of an acute illness. Most will need guidance and education in planning and scheduling their own lives if the family unit is to remain intact.

They may need guidance from the professional staff in working out routines, and the earlier this is done, the more secure, competent, and comfortable the family will feel about having the patient remain at home.

Shortly after a diagnosis is made or disablity becomes evident, families often devote an exorbitant amount of time to the care of the patient. Reactions such as these, while normal in this phase, can only lead to frustrations, guilt, and anger as time passes and the family begins to feel stifled, shut off from the rest of the world, or imprisioned by their fate. This resentment can be avoided by thorough and thoughtful discussions with the family beforehand. Any scheduling must include flexibility, because too rigid routines that do not allow for spontaneity are apt to be short-lived in duration.

The financial impact of chronic disease can be devastating. Medical visits, nursing care, assistive devices, and much more can quickly drain even the most solvent family's bank account. Health professionals educating families must always consider the family's financial abilities and be prepared to make family members aware of available community resources.

Above all, be realistic. To recommend and insist on expensive and elaborate devices to a family of modest means is not only impractical, but insensitive as well. Creativity on the part of the staff working with a family can sometimes lead to substitute solutions that are feasible and within reach.

Educating children of multiple sclerosis patients is a difficult problem, and much of what can be accomplished will depend on how it is presented to the parent. Parents have definite ideas and feelings about what their children should be told.

Despite the presence of MS, the parent-child relationship can and must be maintained. Teaching children requires the consent of the parent, which can only be gained if the parent or parents involved do not see these efforts as an intrusion on their rights. To secure parental willingness, the professional should stress the advantages of education and, even more, the disadvantages of the child being uninformed. Parents sometimes believe that no undue concern is called for when a child has not verbalized apprehension or undergone behavioral changes as a result of a particular situation. On the contrary, the opposite is usually true. Children may not be able to communicate their fears and insecurities. They may hesitate to act in a disruptive fashion for fear of reprisal, but they intuitively sense more than they demonstrate.

Lacking tangible answers to tension in their family's life only adds to their anxieties. Imagination and fantasy take over where explanation and reasoning are lacking.

If there are two or more children spanning several years in age, it may be wise to speak to them individually, since their levels of comprehension are different.

Children can be more adaptive if they develop trust in the adults close to them, and the way to gain that trust is with the truth. In my experience, I have found that honesty is the most significant and indeed the only way to approach the subject with children.

A child's concept of the future is very different from an adult's. What children need is to understand the situation as it exists in an accurate and genuine manner.

Too many family units and multiple sclerosis patients have been destroyed because no one took the time and effort to explain the disease or provide the knowledge necessary for adaptation. Education of the family must be given the priority status it deserves so that future devastation need not take place.

Bibliography

Bardossi, Fulvio. Multiple Sclerosis: Grounds for Hope. New York, Public Affairs Committee, 1978.

Christopherson V.A, and others. Rehabilitation Nursing: Perspectives and Applications. New York, McCraw-Hill Book Co., 1974.

Davis, F.A. and othem Emotional Aspects of M.S. New York, National Multiple Sclerosis Society, 1977.

Price, Gail, and Wood, J. J. MS training in your facility. J.Am. Health Care Assoc. 5:51-74, Mar. 1979.

Wasserman, Lynn and others Living with M.S. A Practical Guide. Boston, Mass. Chapter of the National Multiple Sclerosis Society, 1979.