There are very few of us these days who have not been affected by cancer; whether directly or through a loved one or acquaintance. Talking about cancer can be a difficult and scary experience for people, but it is through education that we can understand it better and make good choices about our health. Being able to make informed decisions about our health is probably amongst one of the most important things we can do. This is no different when it comes to people with intellectual disabilities.
Research has shown that accessible information is a crucial part of providing holistic cancer care to people with intellectual disabilities: ‘… a number of policy and research reports directed at the health needs of people with an intellectual disability have continually highlighted the need for accessible information and effective communication.’ (O’Reagan and Drummond 2008).
Being able to access information is a basic right of everyone and one that is named in the UN Convention on the rights of people with disabilities (article 9). When we do not work to make information accessible, we have control over what people can find out or know. We should not have that control.
It was with this in mind that an interagency project between KARE, the Connect People Network (formerly the Irish Sex Education Network), Brothers of Charity Services Roscommon and the Marie Keating Foundation came about. The Marie Keating Foundation had been giving presentations on women’s health awareness to women with intellectual disabilities in both KARE and the CPN for a number of years and there had always been a huge demand for them. While it was clear that women wanted information on managing their health, the presentations were not always accessible to them.
The Marie Keating Foundation was approached with the idea of making breast cancer information accessible, and it emerged that they had already been thinking along the same lines—having experienced difficulty imparting their presentations to women with intellectual disabilities.
In December 2009, the first meeting took place with Geraldine Gleeson, nurse manager with the Marie Keating Foundation to discuss how we could work together. Frieda Bent represented KARE and the CPN, and we were joined by Marianne Murphy, a psychologist who was coordinating health promotion initiatives in the Brothers of Charity Services in Roscommon.
What followed was the beginning of a very exciting, challenging and innovative project. It was agreed that following the Christmas break, we would pilot a new format for the health presentations and the breast cancer awareness presentation was chosen as a first piece. A pre-and post-evaluation questionnaire was also developed to help establish the women’s understanding of breast cancer, before attending the workshop, and to evaluate whether their understanding had improved following it.
Workshops were arranged in KARE and the Brothers of Charity Services, Roscommon, working with the new format. It was agreed in advance to work with small groups of eight women. The small numbers allowed us to have more group discussion and interaction with the women and to check peoples’ understanding. Time was given at the beginning of the workshop to address any fears people may have about talking about cancer and to acknowledge if anyone in the group had been affected by cancer.
For the presentation, text was replaced with pictures. Some were from the Marie Keating literature while others were simple hand drawn pictures to represent the issues being discussed. A group activity using picture cards was used during the workshop to reinforce the learning, and this proved very effective.
ollowing these first workshops, the group met again to discuss how it went and to review the results of the questionnaires. Feedback from the attendees was taken into consideration as well as from the people who had delivered the workshop. In particular, Ursula Clancy, a nurse with the Marie Keating Foundation who had been delivering the workshops in KARE, offered valuable insight into working in this way, in comparison to working with the standard presentation. Speaking about her experience of working with the new format she said she found it to be an ‘interesting and enjoyable’ experience. Working with the pictures had addressed the literacy needs of the women and the presence of support staff was a great help in terms of picking up on misunderstandings.
The questionnaires showed that following the workshop, women had a better understanding overall of what to look out for when doing a breast self-check and were more comfortable with the idea of doing this. One example given was of a woman who, when asked about the workshop, gave a spontaneous demonstration of how to check herself by raising her arm. Another response given when asked ‘how often should you check yourself?’ went from ‘never’, before the workshop, to ‘when I’m in the shower’ following it. Overall, the response to the workshop from the women who attended has been positive and this has given us an insight into what support women with intellectual disability want in this area.
NUI Galway has recently become involved with the project to help with the evaluation of the workshops. Catherine McGreal (a Masters student) is developing a comprehensive questionnaire to help evaluate the learning of the women who attend the workshops. This will go a long way in helping us to make sure that the workshop gives women the best chance at getting accessible breast health information.
What we are being told is that women want more information on breast health, e.g. ‘to understand it more’; support with breast check and with going to the doctor for check.ups came up as well; ‘help in what way to do it’. But probably what has come across the most in delivering these workshops is the importance for women to have the opportunity to discuss their health—‘I shouldn’t be so self-conscious.’
In order to support this, it is felt that follow-up activities relating to women’s health are a vital part of offering ongoing opportunities for women to discuss any concerns or questions they may have that might not have been answered during the workshop. For women to get the most out of this experience, it is best when it is facilitated within an existing framework of support—a women’s health group or a healthy living programme.
What we have learned from this experience is the value of working with other agencies and the potential for other such initiatives. Speaking about the project, Marianne Murphy of the Brothers of Charity Services said: ‘My experience of working on the project has been very positive. It has been fantastic to link with other agencies and pool the differing expertise and perspectives from group members. I think this led to a much better package design. The evaluative process was useful. I think this type of interagency liaison is the way forward in developing health promoting packages for minority groups as they may have differing needs to the general population.’
Working with complex information in this way is not only beneficial to people with intellectual disabilities, but it also has applications for other marginalised groups. The picture slides developed for the project have recently been used by the Marie Keating Foundation to support a presentation to members of the travelling community. Using the pictures in place of the standard text-heavy slides helped to address the literacy needs of this group of women very effectively.
For the next stage of the project, we will be looking at making the workshop available to as many women as possible. The Marie Keating Foundation fully support working with women with intellectual disabilities in this new format. As Geraldine Gleeson, Nurse Manager MKF said: ‘The Marie Keating Foundation are delighted to work with KARE and the Brothers of Charity, Roscommon, on this project. Our message of early detection and breast awareness should reach each and every woman and it is our mission to provide information and education to ensure this happens.’
Because of the small group numbers and the limited resources nationwide of Marie Keating nurses, a training programme aimed at frontline staff is being developed. The aim of this training would be to equip frontline staff with the knowledge and the skills to deliver the breast cancer workshop within their own services. Later this year, the Marie Keating Foundation will deliver the training to a number of staff from specific intellectual disability agencies in a pilot scheme. Following the training, staff will be offered ongoing support from the foundation and will have the tools necessary to run workshops. In the meantime we continue to learn from our experiences of working with these groups of women, who have been the best teachers of all.