Health Literacy in People with Learning Disabilities
Definition of Health Literacy[edit | edit source]
Health literacy has been defined many times since its introduction by the Council on Scientific Affairs for the American Medical Association. In collaboration with the European Health Literacy Consortium, the World Health Organization developed the following definition: “Health literacy is linked to literacy and entails people’s knowledge, motivation and competences to access, understand, appraise and apply health information in order to make judgements and take decisions in everyday life concerning health care, disease prevention and health promotion to maintain or improve quality of life during the life course” (see Figure 5.1).
Health Literacy
The European Health Literacy Consortium based their research for the determination of the health literacy terminology on the European Health Literacy Survey. This model (Figure 5.2) was based on the medical and public health views of health literacy and the data was collected through the analysis of 17 peer-reviewed definitions and systematic literature reviews analysis.
Figure 5.2 Health Literacy and Public
It relates to a range of communications including written, spoken and visual, as identified by the NHS. According to the European Health Literacy Consortium the main purpose of health literacy is “to promote health care through accessing, understanding, appraising and applying health-related information within health care”.
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The Need for Health Literacy
The United Nations Educational, Scientific and Cultural Organization (UNESCO) estimated that 16% of the adult world population, lack even the basic literacy skills.
According to Doyle et al. communicating health information is a core skill required by all healthcare professionals. In order for the information provided to be useful, it is critical that the recipients are able to understand the information they are given.
Part of the difficulties with communication that people with learning disabilities may face include an inability to understand speech, writing and symbols. This will make any situation within healthcare difficult but it especially applies when providing information or giving instructions to patients, noted by Chinn.
People working within health and social care usually respond well when patients have poor health literacy. However, as stated by the Scottish Government, a patient’s health literacy needs is not always evident and professionals can make false assumptions. The NHS recognized that improving people’s understanding is important as when our health literacy needs are not met, the safety, effectiveness and person-centeredness of our care is undermined. The Patient Rights (Scotland) Act states that the needs of patients should be considered, patients should be encouraged to be involved with decision making, and information should be provided in a way that patients can understand. It is suggested that:
Low health literacy has been linked to poor health behaviors and outcomes, independent of other socio-demographic factors. Health behaviors and outcomes associated with poor health literacy. Reduced health-related knowledge. Poor self-management skills. Poor communication between healthcare professional and patients leading to reduced involvement when making decisions. Increased risk of developing comorbidities. Non-adherence to medication due to difficulty understanding instructions. Lower self-reported health status. Find it harder to access appropriate services. Reduced use of preventive healthcare services. Increased risk of hospitalization and longer inpatient stays. Increased healthcare cost.
According to the European Health Literacy Survey (Figure 5.3):
Figure 5.3 European Health Literacy Survey
Health Literacy in Numbers
Within Scotland, 26.7% of people have occasional difficulties with day-to-day reading and numeracy, and 3.6% will have severe constraints.Those with learning disabilities face a range of challenges with communication; between 50-90% are estimated to have significant difficulties with communicating. This makes communication with healthcare professionals difficult and can affect their ability to make informed decisions.
Taking a closer look at Figure 5.4 and Figure 5.5:
Figure 5.4 Level of Education (International Standard Classification of Education)
Figure 5.5 Percentage of General Health Literacy Levels
According to the graph more advanced countries like Netherlands have a high percentage of education which positively affects the health literacy numbers compared to other European countries, e.g. Bulgaria, with less educated citizens. The classification of the education of each country is based on the International Standard Classification of Education.
Internationally the statistics about health literacy are higher in countries with better quality of life, e.g. Western countries, reaching up to 97% compared to countries with less or no quality of life, where the percentage of health literacy can drop down to 50% or even less, given in Figure 5.6.
Figure 5.6 International Statistics of Health Literacy
Baker et al. completed research on the connection of health literacy and mortality and they concluded that there is a clear correlation between health literacy and mortality. According to the study, conducted in the United States, the mortality risk is increased 50-80% to people with inadequate health literacy (Figure 5.7). “Improving health literacy is critically important in tackling health inequalities. People with low health literacy have poorer health status and higher rates of hospital admission, are less likely to adhere to prescribed treatments and care plans, experience more drug and treatment errors, and make less use of preventive services”.
Figure 5.7 Health Literacy and Mortality
Although our topic focuses on individuals with learning disabilities, as the previously stated statistics show, poor health literacy is not restricted to just the learning disability population so the following information can be useful for others who have difficulty understanding information.
National and International Actions
Scotland’s 2020 Vision for Health and Social Care focuses on prevention, anticipation and supported self-management. At the heart of this commitment is addressing health literacy to deliver a safe, effective and person-centred healthcare service throughout the NHS, regardless of individuals’ abilities. Decreasing the gap between the demands of modern healthcare and people’s abilities will help to reduce health inequalities, and strengthen the wellbeing of both individuals and communities.
The Making it Easy policy has been developed with a national group, which has drawn on the expertise of front line practitioners, policy makers, academics and those with years of experience with NHS boards and the third sector; they in turn drew on the direct experience of those who have struggled to engage with health and care services. This policy highlights that our challenge In Scotland is to those providing services to make accessible and to encourage more engaging and effective communication.
The NHS found out that people with learning disabilities are not able to remember or comprehend more than half of the information that is given to them. It is crucial for enhancing the understanding of such people for improving their safety, quality of communication, effectiveness of information provided, supporting self-management and improving health literacy. According to the Patient Rights Act Scotland it is important for the health care staff to communicate in effective manner with the patient, so that he/she can understand the information provided. The Making it Easy policy is the National Health Literacy Action Plan for Scotland by NHS Scotland. Although, it has been mainly developed for Scotland, it can be proficiently used by other regions to understand the negative influences of low health literacy in people with learning disabilities. The policy clearly sets out particular actions that must be undertaken by health care professionals to address the problem of low health literacy in people with learning disabilities.
This in turn means that it should make it easier for individuals to access services, allowing patients to have better conversations with healthcare professionals, and be in an informed place to be able to take control of their own health and healthcare. The Making it Easy policy and the 2020 vision for Scotland both focus on the need to make changes and be aware to offer patient-centred care. One of these changes addresses that as a healthcare professional, communication with patients should involve a wide range of approaches, making information accessible to all and to enable all patients the chance to make informed decisions over their own health and healthcare management. Healthcare professionals are expected to be able to:
Recognize people’s health literacy needs. Be aware of appropriate resources. Provide a range of communication tools.
Internationally the WHO draw suggestions from numerous systematic reviews and the main points are:
Plain language and use of symbols and pictures in the literature in order to influence literacy levels, despite the fact there aren’t strong evidence to support the effectiveness of the improvement in the health outcomes.
Multimedia presentations may improve knowledge of people with both low and high literacy skills, but these do not appear to change health-related behaviors. Community-based and participatory approaches seem to show some promise. For example, participatory education principles and theories of empowerment appear to help parents access, understand and use health information for the benefit of their own and their children’s health. In addition, initiatives that empower single parents by enhancing their parenting skills, combined with public health, skills development, and recreation interventions, have been shown to improve health literacy, health status and community participation, and to reduce reliance on social assistance. According to the main suggestions and points above the evidence to improve the health literacy are not very strong. In the 7th Global Conference on Health Promotion they decided to set new parameters in the health promotion and how to increase the health literacy levels globally. These points are:
Increase the access to health information through ICT (information and communication technologies). The information needs to be relevant, timely, user-friendly and of sound quality in order to be effective. Promote health information through empowerment. “Enhancing health literacy is one way to empower people to take control over the factors that affect their health and lives. By acquiring relevant knowledge, skills and competencies, they are not only better able to engage in self-development activities but are also better equipped to influence the contexts in which they live”. Provide information through multi-sectoral collaboration. This aim requires the combination and coordination of many sectors in a “horizontal” and “vertical” plane. On the horizontal plane there has to be meaningful partnerships with the key stakeholders in education and business sector. On the vertical is the coordination of local, regional and country levels in order to promote synergy, avoid duplication and more effective to address the determinants of health literacy. Appropriate ways to measure and report any progress in the health literacy levels. The present methods lack reliability and are more suitable for clinical settings, therefore is essential improved methods to be developed in order to include broader areas of health promotion.
The Making it Easy policy shed light on the ignored issues of low health literacy and its negative influence on the ability on an individual to access health care services, understand and engage in health care services available for him/her. It makes clear that low health literacy is the major contributor in the prevalence of health inequality. It is a major challenge and can be dealt with a collaborative approach by the health care professions, resulting in the improvement of health literacy and effective self-management.
Techniques and Tools/Strategies
Wong and Butler stated that from the psychological perspective proficient learners are able to utilise metacognitive tactics but people who have learning disabilities lack the metacognitive skills to guide their learning process. However, on learning metacognitive skills through tools such as easy to read format, these learners can implement the metacognitive skills to direct their own learning in different situations. The Department of Health has suggested that using Easy Read format is one of the tools for ensuring effective access of people with learning disabilities to health-related information. The major aim of an Easy Read document is to give important information to people with learning disabilities, which they should know. Swanson, Harris and Graham argued that if Easy Read formats of documents do not contain all the information present in the original document and this means that people with learning disabilities might miss important information. However, Department of Health argues that although, Easy Read format are not complete translation of the document, they are an excellent source for making people understand information that is essential for self-management, as they only highlight important points. These documents provide all the important information that can be used by people with learning disabilities to make decisions associated with health and social care provisions. Easy read format has simple words and pictures to support people with learning disabilities to remember.
A study conducted by the Department of Health revealed that Easy Read is an effective tool for giving complex information in an attempt to improve health literacy. However, Harwell and Jackson argued that health professional should not just assume that Easy Read formats are always the most appropriate tool for providing information, as people have different levels of learning disabilities. This tool may always not be the answer for managing communication difficulties. Harwell and Jackson further argued that some people may even need help for reading the Easy Read format and in such situations the health professionals can take support of other tools such as videos, presentations and/or one-to-one discussions. However, Snowman and McCown supports the findings made by the Department of Health and asserted that Easy Read documents are an effective tool for managing flow of information between health professional and service users with learning disabilities. Easy Read format helps health professional to provide key information to people with learning disabilities. It is a vital tool for tackling the problem of low health literacy.
In this short video, learning disability volunteers from the project of Getting it Right From the Start are sharing their experiences on easy read documents.
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To find out more click here
Impact of Disability on General Population
Learning disability not only affects the quality of life of people facing difficulties in learning, but it also puts a burden on people around them. Harwell and Jackson states that people who have learning disabilities are highly likely to have poor health outcomes. This also means that they have shorter life expectancies than general population. Their poor health outcomes affect people around them, particularly emotionally, thus creating challenges for the health professionals. It is noted that people with learning disabilities often experience health inequalities, resulting in the unfair distribution of social, environmental and economic burden on not only the person who has the learning disability, but also on other members of the general population. According to NICE health inequalities have created burden on the economy and general population. The cost of treating illnesses arising from health equalities has risen to £5.5 billion per year. This has resulted in negative effects on productivity, resulting in productivity losses of about £33 billion annually, in relation to working-age population. Similarly, taxes are lost and an increase in welfare pay outs has been recorded. It is identified by Swanson, Harris and Graham that health inequalities can be prevented by improving opportunities for people with learning disabilities to have access to appropriate support from the health professionals. People with learning disabilities often face problem when communicating and this can put their safety at risk and create challenges for people who communicate with them. According to a report by Black, the present strategies of care are unsatisfactory, unequal and likely to be breaking the Disability Discrimination Acts. There is a need of adopting practices that can lessen the burden of illness faced by people with learning disabilities and general population. It is important to recognize the disability in its early stages through effective health screenings, in order to provide effective support to the person and his/her family from the start. There is a need of improving health literacy in people with disabilities and in general population, so that people can understand their role in eliminating health inequality. Similarly, it is required that elimination of health inequalities must be measured to assess the progress made by the health professional in reducing the burden of illness. The interventions must be focused to addresses the social determinants of health resulting in health inequalities, for example, the diagram below shows that local economy can be supported by regeneration and business grants. Similarly, other social determinants can also be addresses effectively (see figure 5.8).
Figure 5.8 Social Determinants of health and the role of local government
Policies and Guidelines
This section will present the most relevant and up-to-date policies and guidelines in relation to learning disabilities. It will highlight the most important and useful points of each to help your understanding of the current context of learning disabilities within health care.
Introduction
Please take a few minutes to answer these questions before beginning this section and learning about the policies and guidelines.
1. What do you consider to be important guidelines for a physiotherapist when providing services to people with learning disabilities? 2. Think about how this can help and guide decisions when offering treatments and services.
The importance of healthcare policy and procedures is to provide standardisation in daily operational tasks and activities. It is important for you to be aware of the policies and procedures, as these are essential in providing clarity when dealing with issues and activities that are critical to health and safety, legal liabilities and regulatory requirements.
Marmot identified large inequalities in health, and the literature highlighted that it is vital for policy makers in every sector across health and social care to take on board and make the appropriate changes, to change professionals delivery of services and close the gap of inequality. Marmot goes on about the gaps in health care quality, particularly in the most vulnerable groups, including those with learning disabilities, and it is these areas which need most improvement.
The focus of looking into the policies and procedures as part of this wiki is for you to have an understanding and awareness of how this applies to individuals with learning disabilities and the importance of equal opportunities.
The policies and guidelines we have chosen to focus on are:
United Nations The Keys to Life NHS Quality Assurance Strategy Quality Improvement Scotland
These policies and guidelines were chosen for their relevance in treating and caring for individuals with learning disabilities. As previously discussed, individuals with learning disabilities are seen more and more in mainstream services. As physiotherapists, we are more likely than ever to be required to adapt our approach and find this information and skills appropriate for our work.
It is important to familiarise yourself with these policies and guidelines as you may still encounter people with learning disability even if you do not specialise in this particular area.
United Nations (UN)
The Convention on the Rights of Persons with Disabilities:
It is an international human rights treaty of the United Nations (UN).
The aim of this treaty is to protect the rights and dignity of persons with disabilities.
Parties to the convention have to promote and protect the rights of people with disabilities and ensure that the receive full equality under the law of that country.
Scotland is one of the countries which has signed this treaty and therefore has to abide by it.
It came into force in 2008.
The Keys to Life
The Keys to Life is Scotland’s Learning Disability Strategy.
It was first published in 2013 and significant progress has been made since then.
It highlights the main things people with learning disabilities have said that are essential to having a good quality life.
Now its priorities have been outlined which are to be achieved between 2015-2017.
The implementation of the framework has four strategic outcomes which relate to the United Nations Convention on the Rights of people with disabilities.
Implementation of this framework will help involve the whole of the Scottish Government to deliver change.
Implementing the strategy also involve a commitment to human rights based methods to deliver the PANEL and FAIR approach.
Find out more about Keys to Life.
Their Vision: “All citizens of Scotland who have learning disabilities live longer, healthier lives; are supported to participate fully in all aspects of society; prosper as individuals and are valued contributors to a fair and equal Scotland.”
Methods of implementation: Panel Approach:
Participation Accountability Non-discrimination and equality Empowerment Legality
Fair Approach:
Understanding the Facts Analyse the rights Identify the responsibilities Review actions NHS Quality Assurance Strategy
The main aim and focus behind this is to provide the highest quality healthcare services possible to all individuals in Scotland, while allowing patients to recognise the services available and that they are amongst the best in the world. It has been recognised that for this to be achievable, all healthcare professionals have to be on board and working together for the overall benefit of all patients, by delivering person-centred care all the time.
This policy has been updated from 2007 and many improvements have been made, which include sustainability of economic growth and making sure that equal opportunities are offered to everyone across NHSScotland.
The Quality Strategy builds on these foundations and is about putting people at the heart of our NHS.
It means that our NHS will listen to the views of the people, gather information about individual, group perceptions and personal experiences of care and use that information to further improve care by 'Putting people at the heart of our NHS'.
It is about building on the values of the people working in and with NHSScotland and their commitment to providing the best possible care and advice compassionately and reliably by making the right choice for every person, every time with the individual's involvement. It is about making measurable improvement in the aspects of quality of care that patients, their families and carers and those providing healthcare services see as really important.
Now take some time to look at this diagram and the drivers that have been put into place as part of this policy.
The Quality Strategy Driver Diagram
To read about this driver please click here and go to pages 10-11.
1. Whilst in a clinical setting, which of these have you already seen in place and which do you feel still needs to be implemented?
2. How do you feel that these drivers can be assessed and monitored
On completion of the reflections, we are now going to look at a different policy.
A Quality Alliance, which is the involvement of reporting progress on a regular basis with reference to a set of high-level Quality Outcome Measures, selected to allow monitoring of these Quality Ambitions, and with reference to progress in implementing the improvement interventions.
These Quality Outcome Measures can be found on page 17 of the The Healthcare Quality Strategy for NHSScotland.
Quality Improvement Scotland
Quality Improvement Scotland highlights the importance that every individual in Scotland should receive the highest quality and most unsuitable health care service every time.
Having already read about The Quality Strategy previously, the Quality Improvement Scotland has very similar aims to this policy, and is also part of NHSScotland and is the national healthcare organisation of Scotland.
Quality Improvement Scotland work with staff providing care in GP practices, clinics, hospitals, NHS boards and with patients, carers, communities and the public.
Their drivers are in place to improvement the quality of health care people receive by:
Supporting and empowering individuals to have an informed voice in managing their own care, treatment and shaping how services are designed and delivered. Delivering scrutiny activity which is fair but challenging and leads to improvements for patients. Providing quality improvement support to healthcare providers, and Providing clinical standards, guidelines and advice based upon the best available evidence.
Something which is important to be aware of is that key parts of our organisation that have specific roles, including:
Healthcare Environment Inspectorate
Helps reduce the risk of healthcare associated infection to patients by inspecting hospitals in Scotland to ensure they are safe and clean.
Scottish Health Council
Supports NHS boards to involve staff, patients, carers and communities in the development of health services.
Scottish Health Technologies Group
Provides advice on the clinical and cost effectiveness of healthcare technologies that are likely to have significant implications for patient care in Scotland.
Scottish Intercollegiate Guidelines Network
Develops evidence-based clinical practice guidelines for NHSScotland.
Scottish Medicines Consortium
Accepts for use those newly-licensed medicines that clearly represent good value for money to NHSScotland.
Part of this policy includes the Equality and Diversity Working Group.
This involves consulting the staff on the equality and diversity which includes:
Implementation, development, monitoring and review of equality outcomes and related action plan in accordance with our legal duties, within the area or field. To report progress to the Board through the Scottish Health Council Committee and Staff Governance Committee and help the evaluation of the effectiveness of our equality outcomes. Support the development of equality and diversity which includes training and case studies, which promote an organisational culture where equality, respect and fairness are valued and discriminatory practices are not tolerated. Encourage a partnership approach with other agencies to maximise effectiveness of and reduce duplication in equality and diversity activities. Identify key issues and prioritise required actions in relation to equalities or inequalities impacting on our work Provide input as appropriate on reports on equality diversity issues which are produced for the Scottish Health Council Committee and Staff Governance Committee and to Recognise and value the diverse nature of the workforce and stakeholders by promoting equality of opportunity in recruitment and engagement of both staff and volunteers.
Equality Impact Assessments (EQIA)
The EQIA screening process is put in place to help Quality Improvement Scotland to decide if a policy, function or output of our organisation requires an EQIA or not. This is carried out for every area of work, including work which is produced in collaboration with other bodies. The majority of Quality Improvement Scotland’s work can be progressed with minor or no changes following the completion of an EQIA screening checklist. If, during this process, we identify any differential impact on people with any of the nine protected equality characteristics, the area of work is subject to an impact assessment.
Resources
Completed Equality Impact Assessments can be found below
EQIA report for Healthcare Environment Inspectorate acute hospital inspection reports EQIA report for Occupational health and safety at work policy EQIA report for Participation Standard EQIA report for Scottish Health Council website
