Report on the Needs Assessment

Appendix 8. Findings from Focus Groups

45 informants participated in one of seven focus groups as follows:

7 Focus groups (45 to 60 minutes)
One with Dialysis patients (included 8 patients, 1 caregiver)
One with Dialysis health care workers (8 nurses)
One with Oncology Hematology patients (6 patients)
One with Oncology Hematology caregivers (7 caregivers, 2 patients)
One with Oncology Hematology health care workers (7 nurses)
One with health care professionals of the Patient Education Sub-committee of the Practice and Quality Improvement Council (PQIC) (5 health care workers, 1 nurses` librarian)

Input from participants in the focus groups is written in italics.

Dialysis unit

Focus group with Dialysis health care workers
8 nurses participated including 2 from home dialysis. We explained clearly what we mean by hard-to-reach patients. Answers are very specific to the unit.

Question #1: What are the needs of health care workers who inform and teach hard-to-reach patients? We are looking at the needs of nurses as educators.

Under three headings: written information, oral communication, other materials or teaching tools.

1. Written information (with oral explanation)
   
   1. Hand-outs for patients:
      
      1. "How to deal with and control high potassium, high sodium"
      2. "How to deal with and control weight loss"
      use diagrams and visuals such as happy face, sad face
   2. Bilingual information sheets in plain language for patients:
      
      1. "How to take care of your PD or jugular catheter"
      2. "How to take care of your fistula"
   3. Information on nutrition for patients: foods to stay away from
   4. Information for new patients:
      1. what to expect for the first dialysis
      2. insertion and care of the catheter
      3. control of fluid intake
      4. food intake
      5. importance of taking medication, e.g. for high blood pressure
      6. role of each team member (doctor, different nurses, social worker, etc.)
   5. For nurses: checklist to verify knowledge and understanding of key information by patients
   1. this could be used for teaching a new patient (not do it all at once to avoid
   2. information overload, but do it in parts)
   3. it should also be used periodically with more experienced patients, to reinforce and review key points with them
   4. the check list could be part of the patient's information card
   6. For nurses: translation aids for common terms in other language (written charts) such as Spanish, Greek, Italian and Cantonese.



2. Oral communication
   
   1. Information for patients on:
      1. Fluid management and dry weight, how it relates to blood pressure and blood
      2. pressure medication
      3. How to understand blood results, e.g. Hemoglobin
      4. Explain medication needs ex. EPREX, self-administration of sub-cutaneous medication
   2. For nurses: tools for interaction with patient and for validation; need to check that what needs to be understood by the patient is indeed understood



3. Other materials
   
   1. Videos, posters, pictures, etc.
   2. Video and actual demonstration of how to take care of catheter
   3. Model of a kidney in three dimensions

Question #2: After we explained about the planned Health Education Centres, we asked nurses what are their in-service training needs as educators.

1. Access to resources for video production
2. Access to resources for the production of posters
3. Issues of time, human resources, and financial costs to consider
   1. patient committee should give input, they know what works for them
   2. they should give direct input in the teaching, the material given out
4. Training in simple communication
   1. how to use appropriate words/vocabulary
   2. guidelines for content (so nurses give out the same standard information)
5. A place to find models ex. 3D kidney model

Focus group with Dialysis patients
8 patients and 1 caregiver participated. This meeting involved a lot of preparation (meeting twice with the patient representative, drafting a plain language bilingual invitation, informing the nurse manager, inviting patients from the morning and afternoon cycles, arranging the meal with the dietitian, finding space). Because some patients got off the dialysis machine late and others had to leave early for their transport, time allocation was limited and we had to skip the last question. Three participants were blind and one had very weak eyesight. It was a challenge for them to find a seat, eat, sign the consent form and follow the discussion.

Question #1: What kind of information do you need to know and learn to take good care of your health?

1. Information about diet, especially for a patient who is both diabetic and on dialysis.
2. Proper diet for a small stomach (because of surgery).
3. To see doctor more often, would like to know if there is hope for a future without dialysis.
4. To know where to go in my area or neighbourhood for information on other health issues, such as diabetes.
5. Information on how dialysis interacts with other illness.
6. General information for ALL new patients.
7. More consistent information from doctors and nurses. Sometimes, patients get different opinions from different doctors. One patient said: "We feel like yo-yos".
8. Information to go the other way, from the patient to the nurse. Nurses need to listen more carefully to patients and respect what patients want. For example, one patient asked well in advance to have dialysis while seated, and this was not respected. Nurses need to read charts. They should not get offended and defensive when a patient says that the information is in the chart.

We then presented what the nurses had said about what should be produced for patients (please see results of the focus group with dialysis nurses). We asked patients what they thought about it. They agreed with everything the nurses said and added the following:

1. Information on nutrition: there should be a general chart for all, but it needs to recognize that each patient has specific dietary needs.
2. Information for new patients:
   1. information should be for families also
   2. all the information listed by nurses could be on a video to show new patients and their families, then have a group discussion and go over the main points
3. For new patients, set up a buddy system, bringing together an experienced patient and a new patient; this idea was proposed in the past but was never implemented.
4. About blood results, there is a need to really teach patients about this!
5. About medication needs, there is a need to explain and demonstrate.

Question #2: How do you like to learn?

Five choices were presented and patients were asked to say if they like to learn that way. Patients were told that they could add other ways to learn if they wished. Nobody did. The number identifies how many patients indicated each way of learning.

Read written information like pamphlets: 0 (4 out of 8 patients are blind or near blind)
Watch and listen to a video: 2 (again, 4 patients cannot watch a video)
Have someone explain one-to-one or in a small group: 4
Participate in a group discussion with other patients: 5
Find information on a computer (CD ROM or Internet) with a helper: 0 (the same 4 patients cannot use a computer)

Oncology Hematology Unit

Focus group with patients
Six patients participated in this group (another 2 participated in the caregivers' group). There was some disruption as two patients either left early or arrived late because of appointments with doctors.

Question #1: What kind of information do you need to know and learn to take good care of your health?

1. I need help after hours; I need to be able to access good medical services before 9am, after 5pm, on weekends and during holidays.
2. I need to learn about my health after chemotherapy, what to do to stay healthy after my treatment.
3. I need information about diet, more precise information about nutrition.
4. I need to know how to help my family deal with my illness.
5. I need information about medically approved alternative treatments to chemotherapy.
6. I need information about what to do about combined drugs. For example, if you have a sinus infection and your regular doctor recommends Tylenol or prescribes antibiotics. Is this appropriate when following a cancer treatment? Which doctor should decide?

Question #2: How do you like to learn?
Five choices were presented and patients were asked to say if they like to learn that way. Patients were told that they could add other ways to learn if they wished. Here too, nobody did. The number identifies how many patients indicated each way of learning.

Read written information like handouts and pamphlets: 3
Watch and listen to a video: 2
Listen to a teacher explaining one-to-one or in a small group: 3
Participate in a group discussion with other patients: 3
Find health information on a computer with a helper: 1

Question #3: After explaining about the Health Education Centre, we asked what participants would like to find there? How can we make it interesting and attractive for them?

The results of a brainstorm were:

1. Comments about Gilda's Club:
   1. this place can be "hard" for some patients, a lot of personal questions are asked
   2. some patients do not want to share information with other people who have cancer
2. Information about how to recognize symptoms, now to know that something is not right such as fever, infection, etc.
3. A place for prevention, for example screening for colon cancer as is done for breast cancer
4. Professionals must be giving out the information so patients are secure and know that the information is valid
5. More written information on specific kinds of cancer
6. Information on alternative forms of care, especially post-treatment care
7. Show different videos once a week on different kinds of cancer; promote the showing among patients.

Focus group with Oncology Hematology caregivers
7 caregivers and 2 patients participated. Because of the difficulty of planning a focus group for caregivers at the outpatient clinic, we approached the 17th floor that serves Oncology Hematology in-patients. We said that patients were also welcome.

Question #1 What kind of information do you and your ___ (family member, son or spouse or…) need to know and learn to take good care of the patient`s health?

1. To know more about the health services/support groups in my community and the health services/support groups in the area where my son lives.
2. To know more about nutrition in a medical context. Which foods are the best? E.g., iron-rich foods.
3. To know which physical activities are the best.
4. To have medical information on my son's kind of cancer. I want to know the results of research done about this kind of cancer.

Question #2 How do you or your ___ (family member, son or spouse or…) like to learn?

Five choices were presented and caregivers were asked to say if they like to learn that way. They were told that they could add other ways to learn if they wished. Again, nobody did. The number indicates how many caregivers chose each way of learning.
Read written information like handouts and pamphlets: 4
Watch and listen to a video: 4
Listen to a teacher explaining one-to-one or in a small group: 3
Participate in a group discussion with other patients: 0
Find health information on a computer with a helper: 2

Question #3 After explaining about the Health Education Centre, we asked what would caregivers like to find there? How can we make it interesting and attractive for them?

The results of a brainstorm were:

1. Convenient location, close to treatment
2. Information should come from specialized nurses (but we do not expect them to know everything about all the types of cancer)
3. Videos to see on how families can cope, dealing with the illness from a moral viewpoint
4. A place to find pamphlets about Multimedia (type of cancer). This cancer is rare and it is very difficult to get copies of this pamphlet for family, friends, etc.
5. One couple (parents of patient) added some comments in private, after the focus group. They said that doctors give out very little information and that as caregivers, they do not ask nurses too many questions because nurses are so busy. More human resources should be allocated to patient and family education. This should be a top priority of the health care system.

Focus group with Oncology Hematology health care workers
7 nurses participated.

Question #1 What are the needs of health care professionals who inform and teach hard-to-reach patients?

We presented what three colleagues from the same clinic had contributed during individual interviews, and asked participants to validate and add to what had been said. What colleagues had said:

1. More written information
   
   1. Improve what is given out. In one booklet about the side-effects of chemotherapy, all the "scary" points of information are in bold.
   2. Need for better-written handouts and pamphlets: attractive, good design, in plain language, with large letters, etc.
   3. Some handouts should be translated into Italian and Greek
      Nurses agreed with this and added Cantonese as a language.
2. More time and better space for oral communication/teaching
   
   1. Need for more quiet, appropriate space for teaching. A quiet big room reserved for teaching would be great.
      Nurses agreed with this.
3. Other tools
   
   1. Videos to lend to patients (in English, in French and in other languages).
   2. More time and space to show videos at the clinic.
   3. Good posters, audio tapes.
      Nurses agreed with this.

Participants added the following points:
A (• ) before a paragraph indicates that the consultant has formulated sentences using the notes taken on a flip chart during the focus group.

• Videos could be shown in the family room (need for a mobile VCR).

Participants added other points about the information and education needs of patients:
• All hard-to-reach patients, especially seniors who live alone, need to have a family member come with them to the clinic, in order to increase the effectiveness of teaching. However, the presence of a caregiver does not necessarily resolve everything as they sometimes screen what is said and what the patient needs to know. Also, nurses must not take anything for granted regarding caregivers, e.g. that a daughter trained as a nurse will know what to do.

1. Computer-literate patients need guidance as to what they find on the Internet (quality of information, relevance to their type of cancer). They often find inappropriate information.
2. Patients need follow-up after their treatment; they should see a nurse.
3. There is a need for more information/education related to prevention. There should be more written prevention pamphlets in the waiting room (Nurses pointed out that caregivers are often at a higher risk because they already have a family member with cancer.)

Nurses added that sick doctors are in fact hard-to-reach patients, since they think they know what to do.

Question #2 After we explained about the planned Health Education Centres, we asked nurses what were their in-service training needs as educators.

We proposed some and asked them to validate and add other needs.
We proposed:

1. Need to know/understand more what it is like to be a hard-to-reach patient.
2. Need to know how to identify low-literate patients.
3. Need to know how to teach hard-to-reach patients: how to communicate more effectively with them (oral plain language).
4. Need to know how to evaluate the effectiveness of teaching hard-to-reach patients.

Nurses agreed with these and added the following needs:

1. How to evaluate the effectiveness of teaching with patients in general (at least for the highlights). This can become a legal issue; there is a need to protect health care professionals.
2. How to know that you are facing a patient with information overload. Nurses must NOT assume that all is well after the first treatment.
3. Learn more about health literacy issues of senior patients: the impact of learning problems, memory loss, weak health in general etc. on learning.

Question #3 How can we set up the Health Education Centre for participants and their families? How can we make it interesting and attractive for them?

Some points were proposed. Nurses reacted to them and added more points.
We proposed:

1. On site (while waiting)
2. Drop-in
3. Very welcoming and user-friendly
4. Need to have good strategies to attract hard-to-reach patients and families
5. Multiple means used to inform and teach such as plain-language written materials, videos, one-to-one and small group " classes ", patient discussion groups, Computer programs (maybe), etc.
6. Should have health care professionals and volunteers working in it

Nurses agreed with all the points, except one.
•They did not agree that the Education Centre should be a drop-in. They said that we have to find a way to make going to the Education Centre mandatory, at least for the first visit. It should be a natural part of all that patients go through at the clinic: see the doctor, get a blood test done, see the pharmacist, get your treatment, go to the Education Centre. It should be mandatory for both patients and family members.

Focus group: Practice and Quality Improvement Council (PQIC)
We held a focus group with the PQIC Sub-Committee on Patient Education.
5 health care professionals and the nurses' librarian participated. The key question was:
What are the needs of health care professionals who inform and teach hard-to-reach patients? We presented results from individual interviews and asked participants to comment and add (in italics).

1. Written Information
   
   1. Upgrade teaching materials, the Pre-Op information sheets are a priority.
   2. Write health information in plain language.
   3. Produce material in other languages.
   4. Produce material with better design, font, colours.
      1. Material adapted for visually and hearing impaired.
      2. Work on written documents must be done by professionals: technical writers in plain language, professionals translators, etc. Each professional does his or her task according to his or her expertise.
      3. Maybe the Hospital Communication Department can take this on.


2. Oral Communication (teaching one-to-one and in groups)
   1. More time and better space
   2. Tips on how to communicate more effectively with hard-to-reach patients
      1. Interpreters
      2. " 1-800 " number for patients who have questions and need follow-up


3. Other Teaching Materials
   1. Visual posters and videotapes to show and lend to patients
      1. Posters must be done by professionals.
      2. Use pictograms (internet sites offer good pictograms).
      3. In each patient room, there should be a TV channel with health ` information, offering a choice of topic, illness, in different languages.


4. Training Needs
   1. Not plain language writing, but plain language oral communication, how to use simple, concise oral communication.
   2. How to identify hard-to-reach patients and assess what patients want to know.
   3. How to be aware of different learning needs.
   4. How to assess patient literacy, how patient learns best.
   5. Learn through practical workshop and, role-playing.
   6. We need to have a large spectrum of teaching tools, information pieces and ways to communicate with patients: written information, oral communication, videos, etc. in order to meet the different needs and learning styles of patients. We need to offer different versions of health information materials. Ex. for the patient, more pictoral, but for the family, more detailed written information. Ideally, we should have 4 or 5 different kinds of information and the educator could pick what is most appropriate to the needs of patient and family.
   7. The first step is to update and re-write in plain language our written information. A hospital policy will not do it; each unit must work on it.