Report on the Needs Assessment

3.3 Recommendations

General Recommendations


1. One pilot Health Education Centre should be set up in each participating unit.




Rationale Informants told us that Health Education Centres must be close to where patients come for their treatment or medical appointment and easily accessible. Patients and families said that they would probably come to the Centre while waiting for their treatment, their blood test, to meet the nurse or the doctor, etc. Because the treatment schedules of patients vary, they should be able to access the Health Education Centre at any time during the workday. Most patients would not walk across the hospital to visit an Education Centre. Following the advice of both health care professionals and patients, one specific room in each unit should be designated as the hub for a number of different activities and programs. This is where users would find human resources, written resources, visual material and space for one to one meetings and small classes. Video presentations and patient discussion groups could take place elsewhere. During the Needs Assessment, health care workers identified potential sites for pilots: In Oncology Hematology, the family room is the most likely at this time. In Dialysis, the conference room is a possibility, although it is used for research and meetings. In the Pre-Op Centre, there is space available on the 10th floor.




Human resources

2. A health care professional should be responsible for coordinating the Centres on a part-time basis.



Rationale Based on the advice of interviewed patients and health care professionals and the need for continuity in the units, it is better to have a health care professional take on the role of coordinator rather than have an outside consultant who comes "in and out." This would help build the knowledge and capacity within the unit. The coordinators could also serve as resource people for small classes, presentations, one-to-one meetings, etc.



3. Volunteers, including former patients, should be available to staff the Centres and be involved in programming, under the supervision of the health care coordinator.



4. Patients and families who use the information services of the Centre, and participate in the programs and activities, should be involved in evaluating them.



5. Education Committee, composed of a patient representative from the unit, a family representative from the unit, the health care professional in the position of co-ordinator, a representative from the Health Literacy Steering Committee, and possibly a volunteer and a support staff member, should oversee each pilot Centre.



6. Groups, composed of patients, families and health care professionals in each unit, should develop their own guiding principles and hypotheses, using this report as a starting point. The Education Committees could facilitate these group processes.



7. The Health Literacy Steering Committee, as the driving force behind the entire project, should assume a co-ordinating and research management role for all three pilot Centres.




Rationale Patients told us that they want to be involved in setting up and running the Centres. We know that families play a key role in the education process of hard-to-reach patients. Patients and families should identify their information and education needs and give advice on how to improve what is offered. Patients could also be trained to animate patient group discussions, develop health material and share their experience with others inside and outside the hospital. Many indicated an interest in using participatory approaches. The composition of the Education Committees will help ensure that the interests of all the parties are met. The co-ordination by the Health Literacy Steering Committee (whose composition should be expanded to include one representative from each of the three units) will keep all the pilot projects on track in meeting the overall objectives. While the term "Health Education Centres" is the one being used for the purpose of planning Phase 2, groups composed of patients, families and health care professionals in each unit could find a less generic name for the pilot centre, one that reflects more specifically their own perception of their Centre.





Information services, activities and programs

8. The Centres should develop multi-faceted approaches to patient information and activities, and offer different kinds of health information to meet the different needs of patients and caregivers.




Rationale The Needs Assessment told us what patients and caregivers want to know. To develop the specific content of the information, this input should be used to prepare new information handouts and teaching tools for hard-to-reach patients. This information, much of it is specific to each unit, is included in Appendices 5 and 6. The Needs Assessment also told us how patients and caregivers like to learn. The pilot Health Education Centres should use and offer different learning tools including better designed written materials in plain language; printed resources such as newsletters, journals, publications from patient support groups, etc.; visual material: posters, pictograms, etc.; health videos for patients to borrow and watch at the Centre; and games, Q&A, booklets with cartoons, etc. The activities in the Centres should reflect these findings, and include one-to-one meetings with health care workers; small classes and workshops on specific topics; oral presentations by health care workers; and patient discussion groups and other participatory group processes.



9. Computers and computer-based education should not be a preferred option in the short term.




Rationale Considering the lack of interest on the part of interviewed patients and the large financial investments needed for a computer-based patient education program, this should not be a priority in the short term.




10. Financial resources should be allocated to research, borrow, adapt, reproduce or produce, if necessary, written material and videos offering basic health information in Italian, Greek, Spanish, Cree, and possibly other languages to be identified.




Rationale During the Needs Assessment, patients who face language barriers repeatedly expressed the incredible challenge of learning about their health and understanding their health care. Language represents a formidable barrier with written materials, oral communication, videos, patient group discussions and any form of communication not based on pictograms. Many patients emphasized their need for a family member or an interpreter to be present. They wished that more health care workers could speak their language. They also requested translated written materials, translated videos and visual materials with simple words. The most common "other languages" among this group of patients were Italian, Greek, Spanish and Cree (See Appendix 5 for languages of interviewed patients). Health care professionals also said that basic health information should be available in other languages. The satellite dialysis units in Northern Québec could use the health material produced in Cree. The increased use of visual material and pictograms should also help inform hard-to-reach patients who face language barriers.




11. A professional development training program for health care workers should be designed.




Rationale Findings from the Needs Assessment regarding what health care professionals know about health literacy confirm the need for training. These professionals have difficulty identifying hard-to-reach patients and determining their specific information and education needs. Many health care professionals worry about patient comprehension, and they agreed that the Health Education Centres should co-ordinate training to focus on the ways health care professionals interact with hard-to-reach patients. Topics covered could include how to identify hard-to-reach patients; how to assess the education needs of hard-to-reach patients; how to effectively communicate with and teach hard-to-reach patients (including plain language oral communication); and how to validate the teaching.




12. Participatory group activities should be planned with patients and caregivers.




Rationale The Needs Assessment revealed that patients and family members are not familiar with ways of learning other than written information, oral communication and videos. It is important to familiarize them with other ways of learning, for example, patient group discussions could be introduced progressively. These group processes should be encouraged in general to develop group cohesiveness and empowerment among patients and caregivers, particularly in the dialysis unit. For example, health material could be developed by patients and families. While the literature mentions the use of drama as a participatory approach to health literacy, the Needs Assessment revealed that the use of drama with patients from the three participating units would probably not work well.





Creating the right environment and promoting the Centres

13. The Centres should offer a friendly, welcoming atmosphere free of stress and anxiety.



14. The first visit to a Centre should become part of the intake and orientation process followed by new patients.




Rationale The Needs Assessment showed that, for the majority of interviewed patients, the hospital is the single most preferred location for learning. The Centres' space should be attractive and not look like a hospital room. It should have an attractive name. Patients who like to learn at home indicated that it was because they felt relaxed, at ease and unrushed. Informants said that anxiety interferes with learning. For example, according to Oncology Hematology nurses, a large part of what is taught to their patients is lost because patients are very anxious on the first day of treatment. Patients at the Centres should be able to take their time and not be rushed. The Needs Assessment revealed that time is not an issue for most of these patients; among those interviewed, only one works full-time and one part-time. While Dialysis patients are often in a hurry to return home after the treatment, the Needs Assessment revealed that they could have time before the treatment to visit the Centre. Interviewed patients mentioned the importance of respect and the desire to have all their questions answered. Patients and families should feel relaxed and respected and comfortable enough to ask all their questions. Staff and volunteers should be trained to accept different needs and diverse ways of learning.




15. That special steps be taken to accommodate the group of patients who may be hesitant to use such Centres.




Rationale Health care professionals identified the particular challenge of attracting hard-to-reach patients to the Centres. Promoting the Centres among patients and families should be a priority. Promotion strategies such as offering light snacks and free handouts and showing "fun" videos could be used to attract users. One interviewed patient recommended that the Centres should be very good at public relations, informing patients and families in a clear and simple way about the Centre's agenda each day /each week/each month, in order that they can determine if they need or want to participate. Informants told us that patients and families should be specifically invited to use the information services (read written information, borrow videos, learn from visual materials, etc.) and participate in the activities and programs (small classes, one-to-one meetings, presentations, workshops, discussion groups, evaluation sessions, etc.). Special efforts should be made to attract hard-to-reach patients to the Centres. The Needs Assessment confirmed the importance of the human relationship and the building of trust between patients and health care professionals. A good strategy could be to have health care workers, with whom patients have a strong human relationship and a high level of trust , convince them to make use of the Centres. The Needs Assessment also revealed the central role of caregivers in the education process of hard-to-reach patients, and they could also be used to promote the Centres. Additional outreach efforts should be targeted to hard-to-reach patients who appear not to want to learn about their illness or hesitate about going to the Centres.




16. A system should be developed so those patients who go to the Centres do not lose their "place in line" (if there is one) for their treatment or appointment.




Rationale The patient`s priority is not to miss an appointment or a treatment. Patients should be assured that going to the Centre will not make them late or miss their turn. There should be a way for medical staff to easily contact patients in the Centre when it is time for the patient's treatment. This gesture would demonstrate the value that staff place on the Centres and show sensitivity for the patients' reality.

3.4 Areas for Further Investigation

The analysis in this report has focused on the objectives of identifying the communication needs of hard-to-reach patients and making recommendations for pilot health education centres to test some of the hypotheses developed from the study. The data, however, provides a rich deposit for further investigation, as pointed out in feedback from the evaluator, Dr. William Ninacs. He has identified three potential areas for further investigation that could be fruitful. There are likely several more.

1. On the question of who are the hard-to-reach patients, a re-analysis of the data in the appendices could lead to a set of descriptors of the characteristics of this diverse group.
2. The data could be looked at in terms of the empowerment process using an analytical framework on empowerment. This analysis could investigate the different perspectives on empowerment from the point of view of patients, caregivers, and health care workers.

The group of hard-core "hard-to-reach" patients could warrant further exploration.