Report on the Needs Assessment

2.2 Methods of communication

This section groups informants' responses to questions about written information, oral communication and other sources of health information.

FINDINGS
Written information
More than half the patients interviewed found that the written documents received were not directly useful to them (See Appendix 7). The most common reasons given were that they could not read them because of a language barrier, or that they did not read and that their caregiver took care of the reading. Some dialysis patients had not received the written document. However, a significant group (40%) found that the written documents received in each unit were useful. They said they were clear and that they used them as references, although many said they were not complete. Very few patients criticised the specific information in the written documents. No one commented on the language level, the layout or the design of the written documents. A large proportion of interviewed caregivers found the written information very useful and complete.

Oral communication
A majority of patients interviewed were not satisfied with the oral communication with medical staff. This group of patients identified the following problems:

  1. Language barriers: nurses and doctors cannot communicate in the patient's language;
  2. Lack of time for oral communication;
  3. Lack of specific/complete explanations or contradictory information.

However, a significant group of patients said they were satisfied with the oral information provided by doctors, nurses and other health care professionals. They said they got answers to their questions.

Overall, interviewed patients commented on three aspects of oral communication. They commented on the "what" or the content of the health information given orally by medical staff; they wanted complete health information and an effective education process. They commented on "how" information should be transmitted; and finally, they expressed the need for a positive human relationship with the medical staff based on two-way communication and respect. They gave some specific advice to doctors, nurses and other health care professionals to improve oral communication (See Appendix 7). One interviewed patient noted that nurses and doctors are always keen to tell patients what to do and to inform them about what they are not doing right. This patient said that nurses and doctors should also know when to congratulate a patient for what he/she is doing right.

A larger proportion of interviewed caregivers than interviewed patients were satisfied with the oral communication.

Other sources of health information: videos, group discussions with other patients, workshops, TV and radio shows
Among interviewed patients, few have received health information from sources other than written documents and oral communication by medical staff. The only other source of information experienced by a significant proportion of patients is health videos. Videos are shown during the pre-dialysis clinic and at the Pre-operative Centre. Interviewed patients generally found the videos useful and a good source of information. Videos were not useful to blind patients or to patients who face a language barrier.

Very few interviewed patients have participated in group discussions with other patients but many of them thought they would be useful. They made positive comments, such as that you learn a lot from your peers, that you learn from their questions and their testimonies, and that talking to another patient is comforting. An informal group of Dialysis patients currently meets before treatment to discuss health issues as well as socialize. Only one patient had attended a workshop in a CLSC. A few patients stated their preference for learning in the hospital as opposed to a CLSC because of convenience. Generally, patients are not used to other ways of learning about health care, such as group discussions and health workshops.

Some patients listen to radio or television health shows. A large proportion of patients who answered this question do get health information from television and radio shows, but the content is general and rarely deals with their specific health problem.

Caregivers gave similar responses to those of patients. Some interviewees had seen videos and found them useful. One caregiver had participated in a group discussion; none had participated in a workshop, and while some have seen TV health shows, they did not find them directly useful. Like patients, interviewed caregivers were generally not familiar with other sources of health information.

ANALYSIS
A higher proportion of caregivers than patients found the current written information useful. A probable explanation is that since many interviewed hard-to-reach patients do not or cannot read (more than half do not find the written information useful), the reading becomes the responsibility of caregivers. It is thus logical that a higher proportion of caregivers than patients would find it useful.

A larger proportion of interviewed caregivers than interviewed patients are satisfied with the oral communication. Caregivers appear to play the role of "listener and reader" for the patient, compensating for what the patient is unable to read or understand on his or her own. Caregivers frequently commented on their positive relationship with nurses. Nurses appear to "use" caregivers to reach out to hard-to-reach patients and to make sure that someone caring for the patient knows and understands the essential health care information. The key role of caregivers appears to be recognised and valued by nurses. Many nurses who participated in individual interviews commented on the central role of caregivers in the education process of hard-to-reach patients. This probably contributes to the apparently positive relationship between nurses and caregivers. The role of caregivers in the education process of hard-to-reach patients appears to be very important. It follows that health education centres should take this into consideration when promoting the centre and planning programs and activities. As noted earlier, findings seem to indicate that health information needs may be different for caregivers than they are for patients.

How patients perceive their education process
Some interviewed patients noted the positive impact of health information and eduation:

  1. One patient said that it is better to have medical information early rather than later to prevent problems caused by not knowing.
  2. One patient said it is good to have basic information as complete as possible from the start.
  3. For one patient, information meant hope.
  4. One patient said: "The more knowledge you have, the more often you get it, the better."
  5. A caregiver said: "Knowing more leads to less anxiety."

On the other hand, some patients were less interested in learning about their health:

  1. One patient said: "If it does not help me to get better, I do not want to hear it. I trust the specialists."
  2. One patient, said that he does not want to be reminded he is sick, he wants to forget, to take it out of his mind. He only wants limited information : "The less I know, the better I feel."

A note on an intervention at the Dialysis Unit
The Dialysis Unit has been working for many months creating a Dialysis Patient Education Booklet that meets some of the needs identified by nurses and patients. A nurse and the social worker are involved in the production. While it has not been written specifically for hard-to-reach patients, the creators have attempted to include appropriate information in plain language and to use a design suitable for hard-to-reach patients. This Booklet should be available in 2001.

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