Report on the Needs Assessment

Appendix 7. Findings from Individual Interviews

7.1 Patients' Responses (N=35)

Code for each unit
D: Dialysis patients
O: Oncology Hematology patients
P: Pre-op patients

Part 1. Health education needs and current sources of information

Question 1.1
Information needed

What one Dialysis patient identified as needs:

1. All patients need the information and education on dialysis given during the pre-dialysis workshop. This information needs to be repeated later on with clear examples.
2. The schedule of physicians, in order to know who is coming when.
3. To know the importance of keeping active.
4. To combat the sense of depression and anger, the feeling of being victims. They need to move beyond the complaining mode that affects the body and blocks learning.
5. To learn to take drugs and record symptoms.
6. Information about how to associate side effects with how you feel.

There is a need to facilitate patient-to-patient information transfer.

1. Families need the same information as patients in order to be able to support patients.
2. Remember that patients will be on dialysis for years. It does not matter if they do not understand the necessary information right away, if they only understand after 6 months. They have a lot of time to learn.

Question 1.2

1. Regarding written information
   14 (40%) found the written information they received useful. 6 (17%) did not. 5 (14%) said they did not read it because they cannot read English or French, one said he does not like to read, and 7 (20%) said their caregiver took responsibility for reading.

Unit-specific feedback on written information
7 Dialysis patients found useful the white binder entitled Living with Kidney Disease produced by the Canadian Kidney Foundation (French version is Vivre à sa façon). 3 Oncology patients found useful the pink booklet on chemotherapy produced by the Canadian Cancer Society.
4 Pre-op patients found useful one of the two handouts given to all Pre-op patients: "Day Surgery" or "Preparing for Surgery".

N.B. Some Dialysis patients never received the binder and so could not comment on it. Either they arrived at the Dialysis unit before the binder was produced or they came into the unit following an emergency and did not attend the pre-dialysis workshop (the binder is given during this workshop).

• Regarding oral communication
  15 (43%) said they were satisfied with the oral information given to them by doctors, nurses and other health care professionals. 20 (57%) of patients interviewed are not satisfied.Satisfied patients included 8 D, 3 O and 4 P.

Problems identified by patients:

1. Language barriers: Nurses and doctors do not explain well, they do not explain anything in Spanish; patient does not understand much English, only gets limited explanations.
2. Communication is a challenge when daughter (interpreter) is absent.
3. Doctor does not say everything you want to know.
4. Doctor does not talk enough, gives very little information.
5. Either nurses and doctors do not tell you anything, or, for small problems, they give you too much information in scientific terms.
6. Different staff give you different answers.
7. Nothing is really useful in terms of managing specific situations.
8. Had a session on what to expect from dialysis but it raised more concerns than anything else.
9. Lack of time for patient education, "if you don't speak up, you get left behind."
10. Some nurses are too rough with patients, too hard.

Advice given by patients (paraphrased but respecting their words):

1. Be sincere, do not avoid tough questions, do not avoid information that can worry people or else you have problems later on, tell the truth to caregivers, this is crucial to develop trust; Patient wants information up front, wants to get all the information. So "say why and what it is". Do not keep anything from patient; if the patient is wise, he will know what there is to know eventually. ° Say everything, tell the truth, say everything about the secondary effects. Come out straightforward, do not beat around the bush.
2. Stay clear of medical jargon. Be clear in laymen terms. We need crystal clear information. Use plain language, not medical jargon.
3. Do not speak too quickly. Do not be in a rush. Take more time, listen and try to comfort patient.
4. Listen to patients. We want two-way clear communication. Listen to our needs, our questions and give answers; doctors: do not be dismissive
5. MDs and RNs are always keen to tell what you should do or what you are not doing right, they should also know when to congratulate a patient for what he/she does right.
6. Show respect. Take into account the illness, the sensitivity of patients. Do not treat us like six- year olds (some do but not all). Forget your emotions, your prejudices, learn how to interact and deal with long-term patients.
7. Get to know your patient's level of learning. Ask patient to repeat the key points.

• Regarding other sources of health information

¹ The two Pre-op patients had not yet seen the video.

Question 1.3

If hospital signs are clear enough 3 (9%) patients said no, including one who could not read and one who faced a language barrier. This question and the next are analysed in Section 2.1 of this report.

Question 1.4

If forms are easy to fill out
6 (18%) patients said no, they need help to fill out the forms. This number includes 2 Dialysis and 4 Pre-op patients. The reasons given were because the patient does not read/write, or because of a language barrier.

Part 2. How the patient learns best

Question 2.1
Learning preferences¹

¹In this table, YES indicates the number of patients who like to learn in this manner, and NO the number who do not like or use this method.

Additional responses/comments

Do you like to be alone with a teacher?
2 patients said that a family member must be present.

Do you like to be learning in a group with other patients?
One patient said he does not want to hear about other patients' problems, he has enough dealing with his own.

Do you like to read information?
Of those who liked reading, 3 read in a language other than French or English, 1 reads very slowly, 1 reads with a dictionary, and 1 reads with the family member.

Do you like to have someone explain it to you verbally?
A few patients, including two blind patients, said this is the best way for them to learn.

Do you prefer to ask a doctor, nurse, or someone else (e.g., patient, family member, friend)?¹

¹ Figures show the number of patients who said they would ask questions of the group indicated.

Many patients answered that they prefer to ask both doctors and nurses. Only four patients answered that they prefer to ask someone else.

To learn about health, would you rather be in the hospital, a CLSC, community centre, home or elsewhere?

Additional responses/comments

Prefer the hospital

1. They are comfortable in the hospital. They are already there for treatment, and it is where you find the medical expertise.
2. One patient said that learning about health is all you have to do at the hospital, so you can concentrate on that.
3. One patient said he wants to keep the sickness separate from his private life, and learning at the hospital helps him to do that.

Prefer learning at home

1. Some patients said that home is a better place because they can relax, have more time to think, analyse and note questions, and it is easier to read about health.
2. Home is quieter and they feel more at ease, less nervous than in the hospital. Family members are there to answer questions.

Prefer other settings

1. To learn about health, 3 Dialysis patients prefer to be in a CLSC;
2. 1 Pre-op patient preferred to be in the community clinic (Cree patient, clinic in northern community); and
3. 3 Dialysis patients prefer to be elsewhere (in northern community, in day centre, in cyberspace).

Do you prefer to practice skills alone or in front of a health care worker?

1. 21 ( 64%) of 35 patients prefer to practice in front of a health care worker if they have a skill or a health procedure to learn. 4 (11%) prefer to practice alone. 10 patients did not answer the question.

What makes a good teacher?
Patients said (paraphrased and grouped):

1. Someone who is qualified, who knows about health: professional, extremely experienced, gives complete information, can explain from the beginning until the end, well trained, knows subject well, can answer questions, high level of expertise, speaks different languages (for example, Cree).
2. Someone who is a good communicator and listener: explains well, outgoing, ability to use common language and use analogies, takes time to explain, explains slowly and in plain language, readiness to answer questions along the way and right away; explains clearly and calmly, can keep our attention, good animator.
3. Someone who values positive human relationships: accessible, sincere, makes you feel at ease, understanding, compassionate, has good manners, patient, attentive, caring, relaxed, friendly, human qualities of honesty, friendship, respect and loyalty, is himself or herself.
4. Someone who is empathetic: says things as they are, can put himself or herself in the place of the patient, understands that the information is crucial for patient, takes time one-to-one for questions and respects the patient's rhythm, likes what he or she is teaching, will teach outside the specific subject area.

It is better if the teacher is someone with experiential knowledge, in this case first hand knowledge of the illness, for example a doctor following a dialysis treatment. Patients added that, of course, this was very unlikely.

Do you use a computer?

1. 23 (66%) do not use a computer.
2. Of the 6 (17%) patients who say they do, 2 do not use it to learn about health. This is analysed more fully in Section 2 of the final report.

Part 3. The Health Education Centre

The key question on the Health Education Centre was generally posed open-ended to patients (only if they seemed "stuck" would the researchers offer possible answers). Some patients commented on the location of the Centre, some on the activities and programs, some on its internal organization. This explains why the numbers regarding suggested activities do not add up to the total number of interviewed patients.

What patients said they would like¹:

¹ Numbers indicate how many patients said they would like/use such a service.

5 patients (2 from Dialysis; 1 Oncology Hematology; and 2 Pre-op) said they would NOT use a Health Education Centre.

Reasons were:

1. One already feels well informed;
2. One likes to learn on his own;
3. Two have no interest in learning more;
4. One does not want more information;
5. One added that he is afraid because it will remind him of his illness: "The less I know, the better I feel".
6. One wants to talk about the illness the least possible.

Additional comments/responses

Location of Health Education Centres
Patients said that the Education Centre should be very close to the unit in a clearly allocated room easily accessible so they can use it while they are waiting for their treatment. All the information / services should be in that one place.

Who should take care of the Health Education Centre
Interviewed patients saw specific roles for health care professionals, volunteers and themselves.

Role of health care professionals:

1. One professional managing the Centre;
2. Co-ordination;
3. Resource people.

Role of volunteers:

1. "Staff" the Centres, with specific roles in programming;
2. Run the Centres, supervised by a health care professional.

Role of patients and their families:

1. Give advice on information and education needs;
2. Give input on what it offers, how it works;
3. As equal partners in learning: families would use it just as much as patients: same access/same reasons.

Only four patients mentioned that there should be training offered at the Health Education Centre for doctors, nurses and health care workers. Some mentioned that this should not be a priority since staff members are already doing a good job.

Other comments by patients on the Health Education Centre

1. It should be an organised space offering thematic activities.
2. It should focus on visual information.
3. It should be a library type of place.
4. It should be somewhere to sit down, relax and have lots of time. A place where you can talk and ask questions in a relaxed, no stress atmosphere.
5. Two principles to respect: KISS: Keep it short and simple, OHIO Only handle it once.
6. A centre could help sift through ``hear-say`` (comment from Dialysis patient).
7. A centre should be constructively run, a trend-setter. There should be advance public relations with a very clear agenda so patients know exactly what will be happening, what is going to be said and if they need/want it.