This proposal is subject to change as the project develops.
Background
A number of studies have reported low uptake of health promotion or screening activities among people with learning disabilities which includie cervical screening (Health Inequalities and People with Learning Disabilities in the UK, :2010). Furthermore, health screening programmes provided for the whole population, such as cervical screening, are not accessed by women with a learning disability compared to the general population (Health Needs Assessment Report: People with Learning Disabilities in Scotland, February 2004). The health of people with learning disabilities is an area where, as a social care practitioner, may not always be seen as a high a priority in comparison to the overall population, – the main focus usually being on the individual’s learning or intellectual disability. There was less of a focus on prevention of health issues. Having considered all aspects of health and social care, which is a massive topic in itself, there was a need to have a more focused approach which would focus on preventative health care, specifically, cervical screening tests for women with a learning disability.
Politically, “NHSScotland is committed to understanding the needs of different communities, eliminating discrimination, reducing inequality, protecting human rights and building good relations by breaking down barriers that may be preventing people from accessing the care and services that they need. (NHSScotland Quality Healthcare Strategy, 2010)
“People with learning disabilities have been found to have untreated medical conditions that would normally have been identified and resolved for other members of the community, these can be minor conditions but also include serious concerns such as breast lumps or diabetes” (Gordon et al, 2010).
In June 2013, the Scottish Government published the Keys to Life Strategy which follows on from “The Same as You? A review of services for people with a learning disability”
Recommendation 17 of the Keys to Life states “that the Learning Disability Strategy Implementation Group will work with the Scottish Learning Disability Observatory to establish and implement a targeted health screening programme for people with learning disabilities across NHS Scotland.”
ENABLE Scotland are working in partnership with The Scottish Consortium for Learning Disabilities in reviewing the Keys to Life document and an expert group has been formed which reviews the strategy and how recommendations will improve the lives of people with learning disabilities. A number of people who are supported by ENABLE Scotland are part of this group.
As a social care practitioner, I asked a number of colleagues both in and outwith the organisation I work if they knew any women with a learning disability who had accessed cervical screening. The feedback received overwhelming stated that this was not a service which was accessed routinely. There was a belief this “wasn’t necessary” or it would “cause too much distress and anxiety”. Predominantly the focus on health care for women with a learning disability focused on the “obvious” , for example, epilepsy and other prevalent health conditions for people with learning disabilities. Within the Quality Themes inspected by The Care Inspectorate there is a focus on ensuring the service supports someone regarding their health and well-being. It was important to ensure that the research proposal was relevant to Scottish Government legislation and that the target was focused on perceived unmet health needs for women with learning disabilities.
Therefore, my overarching research question isthe topic of my research is:
“What are the barriers, and enablers for women with learning disabilities in accessing screening services?”
Aims:
To identify what prevents woman with learning disabilities accessing cervical services and what could assist them accessing this service.
Objectives:
1. Compare the data for women with a learning disabilities accessing cervical screening services compared to the general population.
2. Identify relevant health professionals who may face difficulties when someone with a learning disability requires a cervical smear through routine screening.
Theoretical Framework/Methodology
Information Services Division (ISD) is the body who gathers data in terms of health. There will be a need to access data on how many people with learning disabilities are routinely sent information on attending for cervical screening, or if this section of the population are not highlighted. I will Identify women as part of the database who have been sent cervical screening request, half of who have attended, the other half who have not attended. There will be 1:1 semi-structured interviews with up to 10 women, preferably 5 who have attended and 5 of have not attended. 1:1 interviews felt most appropriate due to the sensitive nature of the research as the use of questionnaires may have a limited response. The use of a Dictaphone or other voice recorder would assist in case the research required more of a conversational approach. All women interviewed would have full capacity and understand the concept of cervical screening or have this explained to them in easy to understand language. Pictorial aids could be used if this was deemed the easiest and most comfortable method of communication. Women involved would have capacity to understand the questions and to respond independently. However, in terms of providing support, a family member, carer and a support staff member could attend. This would ensure a safe environment for those involved and would offer reassurance. In order to guage the perspective of direct support staff a focus group would be set up with up to six personal assistants. This would be in a semi-structured format but would centre around the views, opinions and beliefs of Personal Assistants in supporting woman with learning disabilities in terms of accessing cervical screening services. This would allow a correlation to be drawn in identifing if the views of direct support staff impact on the uptake of woman they support in accessing cervical screening services.
A further method of collecting data will be to to make contact with a local Community Learning Disability Team who…Further methods of identifying data to barriers and enabling women with learning disabilities accessing screening services would be to make contact with a local Community Learning Disability Team. A request to attend a team meeting and to raise this issue would be sent in advance. Those in attendance would have the opportunity to review the Research Question beforehand and would be encouraged to seek information from other colleagues, either anectodally or real life examples and comments, names of which would be kept confidential.
Ethics
The research project requires discussion on sensitive issues. Everyone who takes part will be made aware of the confidentiality of the data and that no information which could identify them would be published. Everyone would sign a consent form and be made aware that they can withdraw from the study at any time. The self audit checklist template within the University of Edinburgh, School of Social and Political Science for ethical review was used to assess the potential risks to both participants and researchers and is attached as part of this proposal.
Knowledge Exchange/Dissemination
Information collated will be analysed and presented to agencies, organisations and individuals through IRISS as well as a final knowledge exchange event with all interested parties. This will also be presented to ENABLE Scotland and form part of the Organisational E Newsletter. Results from the research would be prepared in a variety of formats and will be developed in an accessible format and disemminated to local managers. The information will be shared with all participants, families, carers and 1:1 meetings will be offered to discuss the findings if this is requested. The information gathered from the research will be made available to the “Expert Group” who are reviewing the “Keys to Life” strategy and which includes the people supported by ENABLE Scotland and others.