Registed Nurses' Association of Ontario

Meeting the educational needs of persons with low literacy living with cancer in a rural community

Penelope Webster BScN, RN
Winchester District Memorial Hospital

Winchester District Memorial Hospital is a 49-bed community hospital located in North Dundas Township, a rural area south of Ottawa. The population of the area has a lower level of educational attainment and a higher level of many chronic diseases than average for Ontario. The Chemotherapy Unit at the hospital is a satellite unit of the Ottawa Regional Cancer Centre. It handles more than 2,600 outpatient chemotherapy visits every year. Before starting chemotherapy, patients attend an education session in the department. This is a one-on-one session with a nurse, however the patient may bring a friend or family member with them. At the session the patient receives an orientation to the unit, watches a recorded power-point presentation with voice-over, then the nurse reiterates the information and distributes pamphlets and papers. Colleagues and I often noticed that patients experienced “information overload”: i.e. so many new procedures, medications, requirements, side effects, etc. to learn about that it added to the stress of their situation and became difficult for them to process and remember. It was even harder for those patients with lower literacy skills, who sometimes told the nurse that they couldn’t or wouldn’t read the written educational resources provided. At a glance, these resources were of questionable suitability, due to their literacy demand, complexity and layout, among many factors. Patients who do not understand information and instructions are liable to experience unnecessary side-effects, misjudge seriousness of symptoms, leading either to unnecessary ER visits or neglecting to seek treatment when necessary, have their treatments cancelled or postponed, and other adverse effects. Having a long-standing interest in plain language, I was motivated to apply for the RNAO ACPF fellowship to improve patient education in the chemotherapy department at Winchester District Memorial Hospital.

My overall learning objectives for this fellowship were to:

  • acquire theoretical knowledge of adult literacy and health literacy and their effect on comprehension of health education materials;
  • learn how to conduct and implement a needs assessment to identify particular challenges with teaching patients with cancer;
  • develop skills to calculate the readability of patient education materials using different tools;
  • acquire teaching skills targeting persons with low literacy skills (including plain language writing); and,
  • develop my academic writing skills to successfully disseminate projects with diverse audiences.

I completed online courses in Health Literacy for Public Health Professionals and Writing for the Public, and studied scholarly literature, videos, and podcasts on health literacy and plain language communication, and identified how patient experiences are affected by the presentation of information. I interviewed patients regarding their experiences learning about cancer and chemotherapy, including their perception of existing materials, and their suggested changes for improvement. My preconceived ideas concerning about how the patients used the resources were challenged, despite patients reporting being highly satisfied with our patient education. I surveyed colleagues to reach consensus on the essential and important points patients need to know when starting chemotherapy. Through these activities, I learned to collect, manage, and analyze data. I learned to evaluate patient education resources for reading grade level using the Fry system, and for readability and other factors using the SAM (Suitability Assessment of Materials) Score. All the resources we were using were written at higher than the recommended reading level for patient education materials, and scored poorly on the SAM Score due to their content, layout, and readability. A review of a previous Adult Education course, a course on the Teach-Back Method, and other literature provided me with insight into ways to improve patient teaching. This project helped me refine my writing and presenting skills to raise awareness of health literacy among hospital management, staff, patients, volunteers, and family members. I gained competence in academic writing, including annotated bibliographies, reports, and abstracts. Other skills acquired included using various computer programs and apps needed to create presentations, pamphlets, and displays.

As a result of this fellowship project, some new patient education resources have been developed. Because of the different emetogenic potential of different chemotherapy regimes, there are different nausea medication regimes for each one. It is common for patients to be prescribed up to four different medications, both straight and PRN, for nausea. The former information sheet “How to take your nausea pills” had several features that decrease readability and understandability including complex language, passive-voice sentence construction, and the many times photocopied sheet showed faded and skewed lettering on a murky background.

I developed a new sheet for patients, “Your Nausea Pills”, incorporating plain language principles. It includes colour pictures of the different nausea medications, a three-step system for escalating from straight medications to adding PRN oral medications, to PRN injectables, depending on symptoms. The clarity and layout make it easier to read. Patients state they prefer the new sheet and it is expected to improve medication adherence and symptom control.

The current chemotherapy education materials routinely distributed to new patients during their initial teaching session include several unsuitable documents. They are written at an average grade 12 reading level, and their average SAM score is 31% (poor). They contain much unnecessary information, the necessary behavioural information is buried, the literacy demand is high, and the layouts are cramped.

I am in the field testing stage of developing one new pamphlet to replace these five previous documents, using plain language and clear health communication principles. The new pamphlet emphasizes behaviours, i.e. what patients need to do, to stay as healthy as possible while on chemotherapy. It is anticipated that the new pamphlet will be an easy reference for patients, and help them avoid treatment delays by better controlling side effects and obtaining medical attention when necessary.

A third patient education text, a pamphlet for patients finishing chemotherapy, is at an earlier stage of development. This document will explain and validate emotions patients have upon completing treatment for whatever reason, and offer support and resources for cancer survivors and families. Provide a description of the outcomes experienced among colleagues/staff, organization, and stakeholders as a result of the fellowship:

This project generated much discussion amongst the chemotherapy nursing staff. There is more knowledge about resources we give to patients and mindfulness about their content, language, and complexity. Increased awareness of language we use when talking with patients now exists.

Nurses provided input at several stages during the development of education materials regarding what information to include, and had opportunities to supply feedback so that all would feel ownership and engagement with the new resources.

Using the new nausea pill guide has made it easier to teach patients about their anti-emetic regime. Employing the new resources is predicted to increase nurse satisfaction with their task of patient education, lessen feelings of frustration about causing patients information overload, and decrease uncertainty whether patients are absorbing the material.
An inservice is planned to launch new resources and discuss patient education techniques, such as Teach-Back; and adult education concepts such as using multiple modalities of teaching to accommodate different ways of learning, including kinaesthetic, auditory, and visual.

The ACPF project increased awareness of health literacy throughout the hospital. To celebrate Health Literacy Month (October), I held a day-long drop-in display. The display explained health literacy and its importance, literacy demand and plain language communication, described the RNAO ACPF programme, and demonstrated work that was being done on the project. Fifty-eight visitors; including staff, patients, leadership, family members, students, and volunteers; participated in activities such as writing about a time when health literacy affected them or a patient, and analyzing a section of text for reading grade level using the Fry tool.

I gave a presentation to hospital leadership about health literacy, explaining literacy demand and how individual employees and the organization can incorporate consideration of health literacy into hospital culture.

I have recently been contacted by the Diabetes Education Program, and Champlain HealthLinks, which are both supported by our hospital, to provide expert support in developing and revising patient teaching resources.

The fellowship as a whole has been a great opportunity for me to grow my knowledge in an area I am passionate about. I have been interested in health literacy and plain language for many years, and the chance to learn about these issues in more depth and apply them to patient education in my workplace has been very valuable to me. I feel confident that the discussion among my colleagues in the chemotherapy department about patient education and patient resources, and the ensuing development of improved resources will lead to better outcomes for our patients. I have been able to network with people from other departments in the organization and in the community and form new partnerships to improve patient education. I anticipate assisting other departments with developing and revising patient resources and thereby improving patient outcomes and satisfaction. Development in other skills such as presenting, design, and time management has been an additional benefit. Due to staff shortages in my department, getting time to work on this project has been challenging. With certain groups, it has been difficult to constrain their inclination to complicate texts that have been purposely uncomplicated. This remains one of my obstacles in raising awareness of health literacy and clear communication. Notwithstanding the fellowship is a project where people work independently on their own endeavours, I was expecting to have more occasions to network with other fellowship recipients over the term. It would have been reassuring and instructive to have more communication from RNAO during this time. I am looking forward to meeting other fellows at the ACPF forum next month. My favourite moments have been when I could see I was raising awareness of health literacy and plain language issues amongst staff and leadership at WDMH. The visitors to my Health Literacy Display gave enthusiastic comments and indicated they would be able to use this knowledge in their work or studies. I received positive feedback about my presentation to hospital leadership and have had referrals from that to new projects and opportunities.