What Do Patients and Parents Want to Know? What Do They Need to Know?

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SUPPLEMENT 917

What Do Patients

and Parents

Want to Know?

What Do They Need to Know?

Barbara M. Korsch,

MD

From the University of Southern California, Division of General Pediatrics, Childrens Hospital ofLos Angeles, Los Angeles

ABSTRACT. Health, or patient, education is important

in enhancing patient cooperation and compliance with

medical regimens. When communication flows in only one direction (from the physician to the patient),

educe-tion is relatively ineffective. The process of patient edu-cation should be viewed as a joint venture, in which the patient helps to determine what information should be

provided. The physician must consider not only what the patient needs to know, but also what he or she wants to know. The physician should find out specifically what a patient on a particular occasion would like to have ex-plained. If necessary, the physician can effect a bridge

between the information that is deemed to be appropriate and the patient’s perceived needs. Anxiety may block the patient’s receptiveness to health care information. The physician can alleviate these fears by creating a “thera-peutic alliance.” A helpful tactic is to speak in language

the patient can understand, keeping the message simple and specific. Timing is also crucial; the physician must

be able to judge when a patient is ready to receive certain information. The degree of detail offered will depend on the patient’s needs and preferences. The hallmark of a pediatric practice is an open mind and continued readi-ness to assess the patient’s knowledge, receptiveness to additional health information, and current needs. Pedi-atrics 1984;74(suppl):917-9l9; patient education, them-peutic alliance.

An important part of the relationship between patient and physician is health, or patient, educa-tion. When I ask my colleagues how they enhance patient cooperation, how they reinforce compliance

with medical regimens, the answer I consistently receive is health education. When I ask what that means, I am usually told that the physician “gives more information” to the patient, either verbally,

Read before the Symposium on Pediatric Patient Education

Challenge for the 80s, Dallas, Nov 29-30, 1983.

Reprint requests to (B.M.K.) Children’s Hospital of Los Angeles,

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American Academy of Pediatrics.

in written form, or with the use of audiovisual aids. Health education is generally viewed as a “one-way” form ofcommunication: the health educator-the health care provider-alone decides what the patient needs to know and then imparts this

infor-mation. (In this paper, when I refer to “the patient,”

I also mean the parent of a pediatric patient.)

When communication flows in one direction only (from the physician to the patient), it is really not effective. As indicated by the title of this paper, the health educator should consider not only what the patient needs to know, but also what the patient

wants to know. This can be done by eliciting the

needs of the patient as the patient perceives it. Thus, the process of patient education should be a kind ofjoint venture, in which the patient helps to determine the content. In this way, communication

takes place in a “two-way” context.

It is important to address the patient’s perceived

needs. Studies have documented that when health

information provided by the physician relates to a

perceived concern or a current question of the

pa-tient, the information is accepted and often

retthned’ (providing other concerns are met, as

discussed below under “Address the Patient’s

Con-cerns First”). On the other hand, health informa-tion not perceived to be relevant by the patient is

often not only not used but simply not heard. To

illustrate: a series of brochures, entitled “Pierre the Pelican,” on child-rearing practices and the

prob-lems of young children were mailed to parents in a particular health district. It was found that when

the brochure covered the age group (or developmen-tal stage) of the recipient’s child, the parents would read the brochure avidly and act on the information given (unpublished data). Information about other

age groups or about children different from their own was not used.

Again, the basis of health education as a two-way form of communication is for the health

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918 PEDIATRIC PATIENT EDUCATION

tion to be related to the perceived needs of the patient. Only then will the information be accepted and retained. If the patient does not perceive the information to be relevant, it will likely be ignored. Physicians are familiar with the quickness with which patients decide whether the educational bro-chure or handout is pertinent to the patient’s per-ceived needs.

With this view of health education in mind, what

is the most effective way of educating the patient? What positive messages can I give you?

ASK THE PATIENT QUESTIONS

For health education to be effective, a good rela-tionship between physician and patient is

impor-tant. This can be achieved, in part, if the physician takes the time to find out what specifically a patient on a particular occasion would like to have ex-plained, what some of the patient’s actual questions are-in short, the patient’s needs. Information given by the physician in the setting of this aware-ness has a greater chance of being accepted.

What if the pediatrician deems it necessary for a patient to know something and this information is not perceived by the patient as being necessary? In my experience, the pediatrician is usually able to make a bridge between the information deemed to be appropriate and the patient’s perceived needs. For example, a pediatrician examines a baby with a cough and decides that sinusitis is the main problem. Before discussing with the parent how to

use vaporizers or local vasoconstrictors in the nose,

before discussing the need to position the infant in certain ways, reflect that to the parent the infor-mation you the pediatrician want to convey may not appear relevant for treating a cough. It is

im-portant to take the time to explain the cause of the cough and how the advice relates to the problem. This must be explained in terms that make sense to the parent.

ADDRESS THE PATIENT’S CONCERNS FIRST

Address the patient’s concerns first. Otherwise, the patient may not be ready to listen to any message, no matter how relevant. If a parent enters a pediatrician’s office with an urgent concern and

is unable to communicate this to the pediatrician,

or the pediatrician is not skilled in conveying that he has perceived the concern, the visit will be ineffective. The pediatrician’s words will fall on

deaf ears.

I know of one case in which the mother of a very sick child experienced great frustration at trying to engage the physician in addressing her concerns. The mother blocked out whatever else happened during the visit and later reported to an interviewer

that the physician did not examine the child, did not tell her what to do, and how could he, since he

didn’t even understand what she thought was

wrong! Very simply, how can the mother be ex-pected to listen to the pediatrician when she feels that he has not understood the problem? How can she be receptive to information when she feels that her concerns about her child have not been given any attention?

ALLEVIATE ANXIETY

Parents are anxious and worried when they

con-suit the physician, even on a regular health super-vision visit. They are worried about their child’s physical health; they are anxious about their own

parenting skills. They may feel that the physician will be judging them as parents. A negative, judg-mental attitude on the part of the physician can increase the feeling of anxiety or guilt and make the parent less able to receive information. Thus, the physician should constantly be alert to this potential barrier and try to reduce the anxiety, the social distance, and the discomfort of the parent in order to enable the latter to learn what the pedia-trician would like him to learn. This is a basic tenet for me in health education: create a “therapeutic alliance” that frees the parent from unnecessary guilt and anxiety and makes optimal learning pos-sible.

ELICIT THE PATIENT’S EXPECTATIONS

The physician should make every effort to find out what the patient expects in the way of

know!-edge: what does the patient already know and what would he like to know? This can easily be done by asking the person directly: “What had you hoped I might be able to explain to you today?” Or, “What

is your present understanding of what’s been going

on?” Or, “Have you been told anything by someone

else that’s been helpful in relation to this problem?”

Such questions will prevent many unnecessary communication barriers. For example, the patient will not become inattentive because he is being told something that he already knows. Or such question can pave the way to telling the patient something contrary to his previous knowledge or experience. It makes possible what Dr Milton Senn used to formulate as: “Take the patients where you find them and lead them where they can go.”

In s’ummary, for health education to be effective, the patient’s main concerns and expectations need to be elicited, recognized, and acknowledged early in the course of the visit, so that the patient gets the feeling that he and the physician are on the

same wavelength, agree on their perception of what

the problem is, and are talking together and not at

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SUPPLEMENT 919

cross-purposes. This is what I mean by health

ed-ucation being a two-way process.

SPEAK THE PATIENT’S LANGUAGE

Other considerations can also enhance health education. For example, the pediatrician should discuss matters at the level of the patient’s cogni-tive, cultural, and psychologic readiness. Medical jargon is often incomprehensible to patients, and it

behooves the physician to make himself

under-stood. It seems to me that the burden should be placed on the physician to speak the patient’s lan-guage; the physician should not use the occasion of the “sick-child” visit to educate the parent about institutional or technical jargon. Above and beyond the use ofjargon, a problem that is often ignored is that the reading level of the patient is often not up to the reading level presumed in the written mate-rial provided by the physician.

PROVIDE SIMPLE, SPECIFIC INFORMATION

Keep the message simple; it will be better remem-bored. Make the message as specific as possible; it will be more useful than a general comment. For example, to say that worry may cause further stomachaches and that the child should worry as little as possible about his school work is useless. On the other hand, a few specific questions about the child’s relationship with his teachers, the amount of homework, and pressures applied at home may result in information that the family can act on immediately (e.g, the parents can limit the child to one hour’s homework or lower expectations for high grades).

TIMING

When to communicate health information is a

vital issue. In particular, when faced with having to

inform patients about the nature and prognosis of certain kinds of mental retardation or malignan-cies, the physician should give careful thought to when a patient is ready to be informed. At all times, the physician must ask himself, “For whose benefit is this information being given?” It makes a great difference whether the patient is informed because it will benefit him and motivate him to appropriate health behavior, or because the physician is trying to avoid a lawsuit. Whenever possible, the patient’s needs, to the extent that the physician can assess them, should determine the timing of imparting painful or threatening information.

The best guide in assessing a patient’s readiness is to listen to the patient, ask him what he would

like to know, and watch his reactions. This course of action is preferable to having a predetermined agenda as to what to do. Sometimes, of course, a

patient must know something immediately, for

practical or other reasons. In such a case, all that can be done is to offer comfort, support, and help.

HOW MUCH INFORMATION SHOULD BE

GIVEN

Patients vary greatly in the amount of technical detail they wish to know. One way to determine this is to ask them. In one study on informed consent,4 the patient was asked, “Are you the type

of person who wants to know every detail about

what is going to be done and what it means? Or would youjust like to have some questions answered (what’s going to happen to you, what do you need to do) and then ask additional questions as they occur to you?” Patients were quite ready to either have the situation discussed in depth or say that they would rather not be told too much at that time.

SUMMARY

Pediatricians have a special challenge in that

they care for children of all ages and are involved with families of widely disparate backgrounds. The hallmark of a pediatric practice is an open mind and continued readiness to assess the patient’s actual level of knowledge, receptiveness to addi-tional health information, and current needs.

In addition, a spirit of cooperation should exist in the physician-patient relationship. Health edu-cation should be viewed as a joint venture, in which physician and patient decide together how much a patent should know, when to ask the physician for more information, and how the partners in this health care venture can best collaborate. This con-cept of health education requires, on the part of the physician, a readiness to respond to concerns and needs as perceived by the patient, an awareness of the patient’s cognitive and psychologic level of adaptation, and increasing skills in conveying health information.

Health education will not necessarily lead to appropriate health behavior by the patient. But by making the patient more responsible for his health, the physician shall be boosting the patient’s self-confidence, sense of competence, and self-esteem. In the long run, these indirect benefits of health education may be a more significant factor in help-ing the patient to achieve optimal health status.

REFERENCES

1. Korsch BM, Gozzi EK, Francis V: Gaps in doctor-patient

communication: Doctor-patient interaction and patient sat. isfaction. Pediatrics 1968;48:855-871

2. Fremon B, Negrete VF, Davis M, et al: Gaps in doctor-patient communications: Doctor-patient interaction analy.

sis. Pediatr Res 1971;5:296-311

3. Korsch BM, Negrete VF: Doctor-patient communication.

Sci Am 1972;227:66-74

4. Korsch BM: The Armstrong lecture. Am J Dis Child

1974;127:328-332

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1984;74;917

Pediatrics

Barbara M. Korsch