Report on the Needs Assessment

7.3 Support Staff's Responses (N=6)

Questions asked by patients
Support staff in the three units handle all kinds of questions from patients, depending on their role. One technician says that patients sometimes test him with questions, to make sure that he is competent. Support staff refer patients to nurses and doctors when questions are related to health. According to one informant, doctors do not give enough required information to patients. Because of this, she must handle many questions by patients. According to this same informant, patients are afraid of doctors, do not ask them questions and never complain when the doctor is late.

Needs of hard-to-reach patients
Most informants mentioned two obvious needs: Some patients face language barriers so they need an interpreter or a family member to translate. Patients need to come with family members who can help with the visit in general and the health information (translation or explanation).

One informant said that because of the difficult working environment, some nurses do not answer the needs of patients. They experience frustration and communication gap with some hard-to-reach patients. These patients need to feel welcomed and respected, and they need positive non-verbal communication.

One informant said that patients need the medical staff to be listening. Staff members need to stop 3-4 seconds and listen attentively to patients who always manage to make themselves understood through signs and movements if they do not speak English or French.

One informant said that patients are sick people and vulnerable. They need reassurance, hope, love, support and compassion. They need to know "what is going to happen to me?" The spiritual need of patients is totally lacking according to the informant. There are no services offered for patients of Muslim, Hindu, Buddhist or Bahaļ faith. The psychiatrist only comes when there is a crisis.

According to one informant, an important need of all Oncology Hematology patients is to have a sense of family in the clinic. Patients like to feel they are accommodated. When it was a smaller clinic there was a strong sense of family. This sense is slowly coming back.

Patients from the pre-op clinic need basic explanations repeated (where to go next in the hospital, the order of tests, how the operation will unfold, etc.). Because of stress and anxiety they do not pay attention when they get the information. Staff members talk too fast and patients do not follow. They are not really listening to the information. Often "nerves" rather than age makes it harder for them to learn.

One informant mentioned that patients from different cultures have different needs. For example, Inuit people are stoic about pain and are very trusting. They do not demand a lot of information from medical staff. One informant identified some of the cultural differences experienced by Cree patients. These patients generally talk less than non-Cree patients, they are less expressive and give short answers. Because of this, doctors and nurses sometimes think they do not understand. Because so little written information is available in Cree, these patients must rely on oral information and their memory. This is a very big challenge and a limit to patient education. Cree patients sometimes do not feel comfortable in Montreal and do not know about the medical terms or procedures. They need someone to be with them, to explain what is being said, to help with appointments and to get medication. Their most obvious (but difficult to answer) need is to have medical services as much as possible in their northern communities. Cree patients are more comfortable in their village with their families and friends.

How we can improve health information and education

1. Lend patients short videos in other languages (a generic video with audio tapes in different languages). Patients could watch it at home as many times as they want and come back with their questions to ask nurses or the doctor.
2. Use more testimonials. We could show videos of a patient who has gone through successful treatment. Patients would hear not only the information but would get the experience and the hope.
3. Show more what the operating room looks like but not bloody scenes of operations. Patients do not want to see their operation, but they want to be kept aware.
4. Have staff members who are more culturally sensitive.

One informant proposed a simple communication tool that would break down language barriers: Dialysis patients could use a one-pager that would show with pictures all their basic needs (water, blanket, crackers, lunch, etc.). Anyone would be able to use it.

One informant cautioned that even if the information is very simple, we will still not reach some hard-to-reach patients.

Advice on the Health Education Centres

About written information

1. There could be more written information (culturally-sensitive information pamphlets) e.g. in Cree; however, older people do not read a lot; younger people can read English more; and pamphlets tend to be thrown away.
2. We should produce booklets with attractive and colourful cartoons (focus on visual), showing regular people in everyday life situations. We could produce one issue per month, e.g. on an aspect of dialysis.
3. We could develop puzzle games with questions and answers.

About computer programs

1. Computer programs are better for nurses than for patients. Nurses will not have time to help patients with it.
2. Computers are not attractive for older patients, but may be for younger patients.
3. Well-developed computer program could show how new treatments work. This could be part of the patient`s compulsory orientation. It could help to ease fear. If patients know more, this can lessen anxiety levels.
4. Offer computer programs with volunteers from the person's community ex. Greek community.

About drama

1. Drama is not a good idea: too much of an effort, dialysis patients are older people, too hard for them to role-play, too tiring. Drama is good for kids, but not for these adults.
2. Drama could work very well with Cree patients, role playing is a great idea for them. Cree people like support groups; they are a bit like their small close-knit communities.

About other ways of learning:

1. Focus on visual and videos.
2. In the Dialysis unit, take advantage of the TV network to have a channel with health information.

About managing the Centre

1. It is important to have human contact in the Centre. The staff could be made up of volunteers and former cancer patients (ex-patients who are doing well).