Report on the Needs Assessment

2.1 General health information needs of hard-to-reach patients

FINDINGS
Patients
Patient responses can be grouped into three clusters:

1. The large majority of patients interviewed answered that they need medical information about the illness; information about daily living: diet, exercise, activity level, etc.; and teaching about how to take medication and about tests.
2. A minority answered that they need information about how they might feel, how to cope, how the illness could change their life, or information about health sites in the community.
3. A smaller minority answered that they need information about how the illness has changed family life; help to fill out forms; or information about how to get around the hospital.

Dialysis patients in the focus group also identified the need for services. They expressed their need for information and education, but also the need for respect and recognition of their rights as patients. Oncology Hematology patients in the focus group also identified the need for services. This group of patients wants more information to help them make informed choices. They want to be actively involved in their treatment and post-treatment.

Only three patients said the hospital signs were not clear enough; a large majority of patients interviewed think that hospital signs are clear, and hospital navigation was not a concern.

Additional needs:
Patients identified other needs such as information on different options, hazards, treatments, symptoms, side effects and long-term risks; information in other languages, e.g. Spanish and Cree; and more patient-to-patient information transfer.

Caregivers
Caregivers identified as most important the same three needs as patients: the need for medical information, for information about daily living and for teaching about how to take medication, tests, etc. However, a larger proportion of caregivers than patients identified the need to know about how the patient feels and can cope with the illness, how the illness can affect family life and where to find health resources in the community.

The focus group with Oncology Hematology caregivers confirmed the need for family members to know more about health care resources in their communities, and to know more about how families can deal with the illness. These caregivers were interested in having more and better written information. They did not think that their family members would want to learn with and from other patients.

Support staff
Support staff emphasized the human needs of patients: the need to be welcomed and respected, the need for positive communication and the need for caring medical staff who listen to them. They also reflected on the practical needs of patients, such as the need for family members to help them and the need for basic information to be repeated. They told us that offering more and better-written information to patients would not be the solution.

Health care professionals
Health care professionals believe that hard-to-reach patients need disease-specific information, better-adapted teaching material and handouts, and a better, more thorough teaching process. Health care professionals from the Pre-Op Centre added that there was an urgent need to update written material given to patients.

The majority of health care professionals believe that the information given to patients is simple and easy to understand. But a majority of the same health care professionals also believe that many hard-to-reach patients do not understand it. They said that some patients manage with the help of interpreters and family members, or with the support of health care workers who simplify the information, etc. Even then, there remains a core group of patients who probably still does not understand the information given to them.

Health care professionals disagreed on whether the health information given to hard-to-reach patients helps them become more involved in their health care and make more informed choices. (half said yes, half said no). If patients cannot understand the information given, it cannot help them become more active participants in their healthcare. It was agreed that the ultimate goal is to have patients become more involved in their health care.

ANALYSIS
Since a larger proportion of caregivers than patients identified the need to know about the patient's feeling and ability to cope, about how the illness affects family life and where to find health resources, this seems to indicate that health information needs may be different for caregivers than they are for patients. Caregivers probably need to know as much as possible about how to care for the patient, often a family member whose everyday life is directly affected by his or her illness. They also need to know where to find support in the community. It follows that health education centres should have different types of information tailored to the specific needs of both patients and caregivers. One member of the Steering Committee noted several times that in her experience some caregivers of hard-to-reach patients may also be hard-to-reach, and face challenges in understanding the health information. This was corroborated by other Committee members. Since participation in this study was voluntary, caregivers who chose to participate were generally able to communicate quite effectively. However, in trying to meet the needs of hard-to-reach patients in the pilot projects, the possibility of encountering the same problem with caregivers would need to be taken into consideration.

Support staff, more than any other group of informants, emphasized the human needs of patients, the need to be listened to and respected. The literature on health literacy suggests that the role of support staff is often overlooked. This is unfortunate since they can contribute an important perspective. From our findings, it appears that support staff see the issues of patient education and hard-to-reach patients from a different angle. Unlike medical staff, they are not directly responsible for the healthcare of patients. However, they are often on the front line of service and can establish a rapport with patients. Our findings seem to indicate that while support staff are not directly involved in patient education, their perspective is valuable, and should be taken into consideration.

Regarding navigation in the hospital, the literature tells us that this issue can sometimes be a serious problem for hard-to-reach patients. But it did not appear to be the case for the patients interviewed at the Montreal General Hospital (MUHC). However, several interviewees as well as Steering Committee members pointed out navigation problems in other downtown hospitals, such as the Royal Victoria Hospital.

Regarding filling out hospital forms, although the literature reveals that this can be a problem for hard-to-reach patients, it was not identified as a problem by interviewees. There may be particular reasons for this. The Dialysis and Oncology Hematology units have no forms to fill out. However, patients at the Pre-operative Centre do need to fill out the Admission Data Base. Four of the eight Pre-op patients interviewed said they needed help to fill out the form, but nurses at the Pre-operative Centre currently answer this need. Help with filling out hospital forms is either not a need for most of the interviewees, or a need that is currently handled by medical staff or caregivers. This may require further investigation. Navigation and forms may pose a problem for hard-to-reach patients in other units, or the strategies developed in the three sample units may serve as models.

Given the open or implicit agreement among health care professionals that there is probably a group of patients who do not understand the information given to them, some specific steps to address this problem should be taken.