Report on the Needs Assessment

Appendix 2. Needs Assessment research plan

The original research plan was developed in February 2000 and approved by the Steering Committee.

General design
For the Needs Assessment, we will use two instruments for data collection:

1. Individual interviews using a bilingual questionnaire. The questionnaire will be adapted for patients, caregivers, support staff, and health care professionals
2. Focus groups

The Needs Assessment has been designed to answer two key questions:

1. What are the health education needs of hard-to-reach patients9 and how can we meet those needs?
2. What are the needs of health care professionals in terms of the health education of their patients and how can we meet those needs?

To identify the needs of hard-to-reach patients, we will consult four groups of informants: patients, their families and caregivers, support staff, and health care professionals from the three participating units: Dialysis, Pre-operative Centre, and Oncology Hematology. We will also identify the needs of health care professionals from two CLSC's in the area (CLSC Guy Metro, and CLSC Côte-des-Neiges). The following chart indicates the number of planned individual meetings and focus groups. Final numbers can be found in Appendices 6, 7, and 8.

Individual interviews
The procedure will begin by obtaining informed consent from participants. Each individual will read (or the researcher will read) the informed consent form which meets the requirements of the Montreal General Hospital Research Ethics Committee. A copy of the informed consent form is included at the end of this plan (included in Appendix 3 in this Report). The two researchers will fill out a questionnaire with each individual in English or in French. This will take approximately 30 minutes. Individual interviews will take place in each of the three units and in the CLSCs for some health care professionals. Researchers will be careful not to disturb the routine of the unit or the work of the nurses and other professionals.

Patients
We will attempt to interview one-third English, one-third French and one-third patients from ethno-cultural communities, as well as attempt to balance gender, age group and socio-economic background. Nursing staff from each unit will help us identify hard-to-reach patients. We suggest the use of indicators such as:

1. General difficulties in reading and understanding information (e.g., patients who repeat the same questions; who return repeatedly with the same issues; or those who have a blank look during information sessions);
2. Socio-economic background;
3. Education level, if such information is available;
4. Learning difficulties due to cognitive or physical disabilities;
5. Cultural barriers;
6. Language barriers (i.e., lack of fluency in either, or both, English and French).

Once a potential candidate is identified, the nursing staff will approach the individual and ask if he or she would like to participate in an individual meeting. This is required by the Research Ethics Committee. If the answer is positive, the researcher will approach the patient, read the Informed Consent Form, get it signed, and proceed with the individual meeting.

Caregivers
When we interview patients, we will ask them if we can meet with their caregiver. We will explain that their point of view is important for this study. We will add that they can say no, and even if they agree, their caregiver can say no. If the patient agrees, we will approach the caregiver and ask them if they wish to participate.

Support Staff
We will ask these support staff from each participating unit (i.e., Dialysis technicians and patient attendants).

Health Care Professionals
We will ask the nursing staff and other health care professionals from each participating unit and from the CLSC's.

Focus groups
For each unit, we plan to hold one focus group with patients and one with health care professionals. We also plan to hold two focus groups for caregivers and one for support staff. If possible, we will attempt to hold one or two mixed focus groups with patients, caregivers and health care professionals. It may be difficult from a logistics point of view to mix individuals from the three units since they each have a different schedule.

The objective of the focus groups is to initiate a group dynamic, to encourage collective exchanges and to facilitate group discussion. This will enable us to deepen and add a collective perspective to the data collected through individual meetings. We may ask the group what they think of opposing opinions or controversial issues that arise in the individual meetings and launch "trial balloons" regarding the Health Literacy Centre10.

Methodology
We will use the methodology of Concept Mapping in the group meetings. This methodology facilitates the participation of all those present. It eliminates the risk of having one or two individuals dominate the conversation. The animator plays a facilitating role. Key questions are posted on the wall as well as answers from participants. Everyone can see the evolution of the discussion and the results of working together. The results from the focus groups then comprise a synthesis and analysis of the contributions of each participant.

Sampling
Patients
For focus groups, we will use a cross-section of patients from the three units, assuming that a fair percentage of hard-to-reach patients will be represented. We anticipate that the health literacy difficulties we uncover would apply to low-literate as well as more literate patients. It will be a challenge to set up focus groups with patients who are receiving long and tiring treatments (dialysis and chemotherapy). We could possibly plan a small luncheon.

Health care professionals
We will ask the staff from the three units, a mix of those who filled out the questionnaire and those who did not.

Caregivers and support staff
We will ask those who responded to the questionnaires, and if additional input is needed, others who did not.