Healthcare Information Needs of the Visually Impaired. Bridging the Visual Impairment Digital Disability Divide


Master's Thesis, 2017

86 Pages, Grade: 4


Excerpt

Inhaltsverzeichnis

1 INTRODUCTION
1.1 RESEARCH BACKGROUND AND MOTIVATION
1.2 RESEARCH FOCUS AND SCOPE
1.2.1 RESEARCH PURPOSE AND GOALS
1.3 RESEARCH STRUCTURE

2 HEALTHCARE INFORMATION ACCESS
2.1 TYPES OF BARRIERS
2.2 AWARENESS BARRIERS
2.2.1 PATIENTS' PRESUMPTION
2.2.2 PROVIDERS' STANCE
2.2.3 EXECUTIVES' APATHY
2.2.4 MANUFACTURERS' EXCLUSIVENESS
2.3 ACCESSIBILITY BARRIERS
2.4 MOTIVATIONAL BARRIERS

3 HEALTHCARE INFORMATION NEEDS OF THE VISUALLY IMPAIRED
3.1 VISUAL IMPAIRMENT AND THE DIGITAL DIVIDE
3.2 ASSISTIVE TECHNOLOGIES FOR THE VISUALLY IMPAIRED
3.3 HEALTHCARE INFORMATION SOURCES AND ACCESSIBLE FORMATS
3.4 LEGISLATION AND POLICIES ON DISABILITY RIGHTS AND ACCESSIBILITY
3.4.1 THE UNITED STATES
3.4.2 FINLAND
3.4.3 IRELAND
3.4.4 THE UNITED KINGDOM
3.4.5 FRANCE
3.5 INFORMATION SYSTEMS AND STRATEGIES THAT SUIT VISUALLY IMPAIRED PEOPLE
3.5.1 FINLAND
3.5.2 THE UNITED KINGDOM
3.5.3.FRANCE
3.5.4 IRELAND
3.5.5 THE UNITED STATES OF AMERICA

4 RESEARCH PROCESS
4.1 RESEARCH METHODOLOGY
4.2 DATA COLLECTION
4.2.1 SURVEY OF VISUALLY IMPAIRED PEOPLE'S INSTITUTES IN EUROPE
4.2.2 SECONDARY DATA ON ICTS
4.3 DATA ANALYSIS
4.3.1 DESCRIPTIVE ANALYSIS
4.3.2 INFERENTIAL ANALYSIS

5 RESULTS
5.1 RESULTS FROM THE DESCRIPTIVE ANALYSIS
5.2 RESULTS FROM THE REGRESSION ANALYSIS
5.2.1 RESULTS ON THE OVERALL DATA ANALYSIS
5.2.2 FINLAND DATA ANALYSIS RESULTS
5.2.3 IRELAND DATA ANALYSIS RESULTS

6 DISCUSSION
6.1 THE CORE BASIS
6.2 THE OVERALL RELATIONSHIP
6.3 FINLAND
6.4 IRELAND

7 CONCLUSIONS

8 RECOMMENDATIONS

REFERENCES

APPENDICES
APPENDIX 1
APPENDIX 2
APPENDIX 3
APPENDIX 4

List of Charts

Chart 1 The Finnish register of visual impairment for the year 2011

Chart 2 Projected number of VIP (in millions) in the UK

Chart 3 Projected number of VIP (in millions) in the USA by cause of impairment

Chart 4 Comparison between Finland and Ireland in terms of the number of IHCIA instances

Chart 5 Comparison between Finland and Ireland in terms of the existence of IHCIA

Chart 6 The comparison between the two countries in terms of performance indicator values for ICT

Chart 7 The overall relationship between IHCIA and ICT performance of both countries

Chart 8 The Finnish relationship between the number of IHCIA instances and ICT perfomiance indicators

Chart 9 The Irish relationship between the number of IHCIA instances and ICT perfomiance indicators

List of figures

Figure 1 The relationship between the barriers to healthcare infomiation access and the factors involved in their creation

Figure 2 The one-to-many relationship between IHCIA and ICT perfomiance indicators

List of tables

Table 1 Back-end assistive technologies for the visually impaired

Table 2 Input assistive technologies for the visually impaired

Table 3 Output assistive technologies for the visually impaired

Table 4 Accessible information to everyone using accessible formats

Table 5 Finnish organizations and their role in providing services for the VIP

Table 6 The survey on the healthcare information needs of the Finnish visually impaired

Table 7 The survey on the healthcare information needs of the Irish visually impaired

Table 8 Taken from the global networked readiness index 2014, showing ICT performance of Finland and Ireland

Table 9 The responses to the survey on the HCI needs of VIP in categories for both countries

Table 10 The 2012-2013 ICT perfomiance indicators of Finland and Ireland

Table 11 Round-up mean values for IHCIA and ICT performance values of Finland and Ireland

Table 12 The Finnish variation in the number of IHIC A as the indicator values change

Table 13 The Irish variation in the number of IHIC A instances as the indicator values change

Table 14.1 The best fit values with 95% confidence regression output for the overall relationship between number of IHCIA instances and ICT performance indicators

Table 14.2 Slope significance and data regressional output for the overall relationship between number of IHCIA instances and ICT perfomiance indicators

Table 15.1 Best fit values with 95% confidence regression output analysis for the Finnish relationship between the two variables

Table 15.2 Slope significance and data regression output analysis for the Finnish relationship between the two variables

Table 16.1 Best fit values with 95% confidence for the Irish relationship between the two variables

Table 16.2 Slope significance and data for the Irish relationship between the two variables

Table 17 Risk analysis table to prevent wrong conclusions

Abbreviations

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ABSTRACT

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Abstract

The focus of this research is to develop an understanding of how visually impaired people face a digital disability divide. The scope of this research is limited to people with visual impairments who may or may not have access to technology. The research shows how to bridge the divide while exploring relevant topics that lead to the conception of feasible solutions. Further, it will contribute to the development of more socially inclusive healthcare information systems.

The research is supported by a thorough literature review of articles, journals, and research reports dealing with the major relevant topics.

A qualitative research method was used to identify and obtain an in-depth understanding of the healthcare infomiation accessibility (HCIA) barriers that visually impaired people face, and the factors involved in the creation of these barriers. Moreover, a quantitative method was used to collect primary data, and a number of different analysis methods were used to produce results. This led to findings that were generalized to the larger population of the visually impaired.

The research shows that, despite the staggering advances in Information and communication technology (ICT), the healthcare Information needs of the visually impaired are not being met. However, it has also been discovered that the digital divide caused by visual impairment can be mitigated with intelligent design and the realization of infomiation systems intended to fulfill the healthcare infomiation needs of the visually impaired. A logical infomiation system is needed that has a combination of input, back-end, and output assistive technologies with increased social inclusion and the capability to empower visually impaired people and help them access available healthcare infomiation.

Visually Impaired People, Healthcare Infomiation Accessibility, ICT, Incentives for Healthcare, Barries, Factors, Assistive Technologies, Alternative Fomiats

ACKNOWLEDGEMENT

With love and appreciation, the Author would like to thank, all who had participated in making this research a reality. I would like to extend my thanks to Prof. Reima Suomi and M.Sc. Neeraj Sachdeva who supervised the research and guided the Author throughout the thesis work with dedication; the University of Turku for providing the excellent educational platform and resources needed to accomplish the thesis tasks online; the Finnish and the Irish delegates who collaborated in the data collection features of the research; family and friends for their continuous support in all aspects of the Author's educational activities including this thesis; and finally, God and The Lord Jesus Christ, who have sustained the Author without cease in all dimensions of life as well as in this research.

1 INTRODUCTION

1.1 Research Background and Motivation

Healthcare information is vital for health promotion, health protection, and the prevention of diseases. Every second, there is a vast amount of patient infomiation being created by the different clinical Information systems (CISs) to assist the healthcare delivery process. These systems include electronic medical records (EMRs); electronic health records (EHRs); personal health records (PHRs); and ancillary systems such as laboratory, pharmacy, and radiology Information systems (Jacob 2008; Gunter and Terry 2005; HeahhIT.gov 2015).

Access to this healthcare Information both by the patient and the healthcare professional is crucial for making informed healthcare decisions. This applies to different demographic and healthcare settings. Failure to address a patient's right to access their own healthcare infomiation (HCI) or to health-related infomiation would result in a healthcare infomiation digital divide (HCID). A digital divide exists between infomiation haves and have-nots (Buey 2000) and is a temi used to describe the disadvantages faced by those who are either unable to or do not wish to use infomiation and communications technology (ICT) (Cullen 2001). It is also a phenomenon of a multidimensional nature (van Dijk 2002; van Dijk and Hacker 2003 as cited in Wei and Hindman 2011). Among the clients of healthcare systems globally, the visually impaired are often victims of insufficient healthcare provision (Beverley, Bath, and Barber 2007; Saulo, Walakira, and Darj 2011).

There are approximately 285 million visually impaired people (VIP) worldwide. Of these, 39 million are believed to be blind while 246 million have low vision (WHO 2016a). Further, the International Classification of Diseases (ICD) has identified four levels of visual impairment: nomial vision, moderate visual impairment, severe visual impairment, and blindness. Moderate visual and severe visual impairment are categorized under low vision. Those with low vision or blindness are said to be visually impaired (ICD 2006 as cited in WHO 2016a).

The Finnish Federation of the Visually Impaired 2016 has reported that Finland has about 80,000 VIP of which 10,000 are blind and 70,000 are partially blind in different ways (FFVI 2016). In the Republic of Ireland, there are about 12,995 visually impaired people (Green et al. 2016). In the United Kingdom, nearly two million people live with sight loss, but only 360,000 are registered as blind or partially sighted with their local authorities (RNIB 2014a). By 2020, the WHO estimates a two-fold increase in the number of visually impaired people worldwide (WHO 2016a).

Despite advancements in ICT solutions, there is a lack of coherent information systems and arrangements intended to fulfill the needs of this significant portion of the global population. Since the creation of Article 19, the right to information has become a fundamental human right (ICCPR 1966 as cited in OHCHR 2016a). Additionally, the Convention on the Rights of Persons with Disabilities states that disabled people have the right to information on an equal basis with others and through all fomis of communication of their choice (UN 2006). Therefore, individuals have the right to infomiation that is timely, that is in an accessible format, and with a high degree of relevance and use.

Several studies reveal that visually impaired people in different parts of the world wish to have access to healthcare Information for the promotion and protection of their health and the prevention of disease (Cupples, Hart, and Jackson 2012; Beverley, Bath, and Barber 2011; Beverley et al. 2007; Saulo et al. 2011; Holdings 2009). According to these studies, the vast majority of the visually impaired want their healthcare infomiation to be in an accessible fomiat. Meanwhile, researchers have identified visual impairment as a major source of a digital disability divide (D3), and this posing a barrier to healthcare provision, which implies health risks (Beverley et al. 2007; Sachdeva, Tuikka, Kimppa, and Suomi 2015; Saulo et al. 2011). In the context of ICT, a digital disability divide exists between those with impairments and those without. This divide has multiple dimensions such as access, accessibility, and use. Its effect can be analyzed both nationally and globally (Dobransky and Hargittai 2006 as cited in Sachdeva et al. 2015).

There are various studies that report the lack of national arrangements for supporting the visually impaired in their healthcare infomiation access (Cupples et al. 2012; Beverley et al. 2011; Saulo et al. 2011; Holdings 2009; Frances, D’Andrea, and Siu 2015; Kumar and Sanaman 2015; Ando, Baglio, La Malfa, and Marietta 2011). Some have disclosed the lack of collaboration between healthcare providers, healthcare professionals, and visually impaired patients and have suggested closer liaison between these groups (Saulo et al. 2011; Holdings 2009).

The main motives for conducting this research relate to the existence of conventions and laws in an effort to ensure infomiation access rights for visually impaired people. These various studies report the interest in participation among visually impaired people in the delivery of healthcare processes. The healthcare infomiation needs of the visually impaired are still unfulfilled despite the staggering advances in ICT that are seen in today's world. Hence, there is room, willingness, and the opportunity to bridge the digital disability divide caused mainly by visual impairment (VID3). This is important since, as discussed earlier, this D3 is caused by visual impairment and poses a threat to the health of this group of individuals.

Consequently, social inclusion can be improved by enhancing healthcare information systems while bridging the digital disability divide for the visually impaired.

1.2 Research Focus and Scope

Earlier studies have covered the various causes of digital divide. Several decades of researches has identified factors affecting digital information access; these include: finance (i.e. economy and income), social, government policies, ethnicity, gender, education, geographic location, and age (Rice and Haythomthwaite 2006; Wilson, Wallin, and Reiser 2003; Buey 2000; Hoffman, Novak, and Scholsser 2000; Jones, Johnson-Yale, Millermaier, and Perez 2009; Hindman 2000; Wei and Zhang 2008; Loges and Jung 2001). However, these factors are generic and do not specifically address the impact of disability on the digital divide. A number of studies have shown that these factors also overlap with the digital disability divide. Emphasis should be drawn to social (Zetterström 2012; Wahl, Fänge, Oswald, Gitlin, and Iwarsson 2009; Mavrou 2011); financial or economic (Vériek 2004); educational (Li 2010); and technological (Sachdeva, Tuikka, and Suomi 2013) factors.

This research assumes that people with autism, chronic illness, hearing loss and deafness, intellectual disability, learning disability, memory loss, mental illness, physical disability, speech and language disorders, and visual impairment face a digital divide and that each can have its own D3 category. A study by Sachdeva et al. (2013; 2015) has provided a conceptual framework for analyzing the digital disability divide.

This research paper focus on one type of digital disability divide—the visual impairment digital disability divide (VID3). For this reason, the scope of the research is limited to the digital disability divide caused by visual impairment. The paper will use of the conceptual framework developed by Sachdeva et al. (2013; 2015) as an example for analyzing the VID3. Moreover, it will find the communication barriers causing the VID3 and the factors associated with its creation. This will be done in relation to access, accessibility, and the use of healthcare information in the context of ICT. Above all, this paper will conmiunicate on how to bridge the digital divide by reconmiending feasible solutions.

1.2.1 Research purpose and goals

The purpose of the research is to study the visual impairment digital disability divide. The goals of the research are to improve healthcare infomiation access, accessibility, and use by providing a means to bridge the visual impairment digital disability divide using ICT. The collective actions taken to pursue and achieve the main goals of the รณdy are listed below:

- Understanding the major HCI access barriers and the factors associated and the nature of visual impairment itself and its impact on infomiation accessibility.
- Identifying potential areas of the research and the knowledge gaps thereof and assessing relevant earlier studies on the problem areas together with the corresponding investigation required to address them.
- Carefully documenting previous studies to support and make clear the contrasting methodologies and findings of this study.
- Studying the best practices that aim to facilitate and arrange ICT support services for VIP in a number of European countries and the United States.
- Investigating existing IS that are designed to support VIP in the countries of interest in this research, namely the Unites States, Finland, the United Kingdom, Ireland, and France.
- Examining available assistive software and technologies for VIP.
- An insight investigation into healthcare infomiation sources and accessible fomiats.
- Exploring legislation and policies on accessible healthcare infomiation that favor VIP.
- Discovering infomiation systems and strategies that suit the needs of VIP in the countries of interest.
- Studying the relationship between ICT advancements and the healthcare infomiation needs of VIP and making comparison among countries of interest.

1.3 Research Structure

This research has eight major chapters. Chapter 1: This covers the background and motivation; focus and scope; and the stmcture of the thesis. This section includes the purpose and goals of the research and the actions taken to pursue it.

Chapter 2 Healthcare Infomiation Access: This part of the thesis will help the reader to understand infomiation access in the context of the provision of healthcare services for VIP. Furthermore, it explores the barriers to healthcare infomiation accessibility (HCIA) and the factors involved in the creation of VID3. Most importantly, it covers each type of barriers, namely awareness, accessibility, and motivational barriers.

Chapter 3 Healthcare Information Needs of the Visually Impaired: This chapter covers visual impairment and the digital divide; assistive technologies for the visually impaired; healthcare infomiation sources and accessible fomiats; and legislation and policies on disability rights and accessibility, Information systems, and strategies that suit visually impaired people. The last two explore their respective topics in the United States, Finland, Ireland, the United Kingdom, and France.

Chapter 4 Research Process: This chapter covers the research methodology and describes the methods used to conduct the research. Furthermore, it describes the data collection aspects of the research, which includes the survey of VIP institutes in Europe and secondary data on ICTs. Finally, it covers the data analysis section, which has two sub-sections: descriptive analysis and inferential analysis.

Chapter 5 Results: This chapter covers the results from the descriptive analysis and the regression analysis. In the regression analysis, the results obtained are classified into three groups: the overall data analysis; Finland data analysis; and Ireland data analysis.

Chapter 6 Discussion: This section discusses the results obtained for the three different cases. In each case, it goes through a statistical procedure to test the null hypothesis. Additionally, it gives an insight into the possible relationship between ICT and HCIA.

Chapter 7 Conclusions: This chapter summarizes the findings. The reader should, however, understand that some of the concluding comments are temporary as the situation may change over the coming decade. Most importantly, this chapter will suggest a feasible solution on how to minimize the visual impairment digital disability divide.

Chapter 8 Recommendations: This final chapter proposes future studies that need to be carried out as the continuation of this study. The impact of technology on the HCI accessibility of visually impaired people is given particular emphasis. Moreover, it will give general suggestions on how to resolve issues of awareness, accessibility, and motivational barriers.

2 HEALTHCARE INFORMATION ACCESS

2.1 Types of Barriers

For the proper promotion and protection of health and prevention of diseases, access to healthcare information is decisive. It is vital to understand infomiation access in the context of the provision of healthcare services for VIP. In addition to the visual impairment itself, there are other barriers to healthcare infomiation access to consider. These include awareness, accessibility, and motivational barriers. Identifying and addressing the barriers and associated factors that affect access should help to minimize the VID3. The apotheosis of technology's design and production will be measured by its capacity to enable the widest variety of disabled users to perfomi their daily tasks with little or no help from outside parties.

2.2 Awareness Barriers

2.2.1 Patients' presumption

Due to the awareness barrier, VIP are unable to access healthcare infomiation, making the healthcare delivery process difficult as a consequence. This barrier has multiple aspects, which include patients' presumption or prejudice; providers' stance; executives' apathy; and manufacturers' exclusiveness. The author of this paper is convinced that understanding the nature of these barriers is a cmcial step that must be taken before any attempt is made to reduce the VID3 effect. The four major social, technological, financial or economic, and legal factors are present here. The reader can identify these factors in the topics of barriers while contributing to the creation of the barriers.

Studies have revealed that the prejudice that visually impaired people have about infomiation access contributes to creating this barrier (Holdings 2009; Marthe and iversen 2015). VIP's mistaken perception that particular healthcare infomiation does not exist serves as a barrier to its access. Although this notion is based on reasonable premises, this is not always the case. Studies in the UK have shown that the majority of visually impaired patients do not inquire whether healthcare infomiation can be presented to them in an accessible fomiat (Holdings 2009). As a result, they are not aware of the different accessible fomiats available and hence the healthcare infomiation is inaccessible.

Another reason mentioned in the report is the fear that VIP have of being treated by providers and other staff as people needing special care. The findings by Sharby, Martire, and iversen (2015) in the United States shows that the visually impaired patients assume healthcare professionals do not take them seriously and thus they are less interested in accepting reconmiendations or asking for more care. Social, technological, legal, and financial factors are among the factors that affect patients' presumption barrier (Holdings 2009; Vériek 2004; Sachdeva et al. 2013).

To minimize the effect of the social factors on the degree of VIP awareness, it is vital to work on social innovation. Social innovation is important for increasing the awareness and acceptance of technology among the visually impaired. One possible way for social innovation to emerge is by solving social puzzles both at the individual and the community level (Sachdeva et al. 2015). Technology also affects the way VIP search for digital infomiation and as a result makes their access to healthcare infomiation hazardous. For example, the progress of web-based infomiation towards dynamic and interactive design has increasingly excluded VIP, consequently decreasing their awareness. This is especially tme for those using technologies such as screen readers, which face difficulties when dealing with Flash, JavaScript, and PDFs (Brophy and Craven 2007 as cited in Kumar et al. 2015).

Legal and policy issues also significantly affect awareness among VIP. There have been situations in which these people could demand healthcare infomiation in an accessible fomiat, but did not as they were not aware of their legal rights. The report by Holdings (2009) shows that nearly two-thirds of the visually impaired did not know of the existence of policies and legislation that were designed to protect their infomiation access rights.

Financial or economic factors affect VIP healthcare infomiation access. Unemployment is common among VIP, which greatly affects their financial independence. As a result, the majority are from a lower socio-economic class where the availability of ICT facilities is scarce. In such cases, VIP's negative presumption about accessible healthcare infomiation is understandable.

Unemployment is largely responsible for their financial problems and therefore governments, social institutions, and relatives of VIP are expected to do their part to reduce this problem. A study by Vériek (2004) shows the importance of refomiation that aims at hiring more disabled people. After the refomiation came into effect, there was an increase in employment of 24% from an approximate number of 45,305 disabled people between October 1999 and October 2002.

2.2.2 Providers' stance

Healthcare providers also generate a barrier unintentionally for a number of reasons. Practices such as relying on others (i.e. family members, carers, relatives, etc.) to assist VIP; the lack of special training on the healthcare information needs of the visually impaired; and the lack of awareness regarding organizational policies, processes, systems, and support intended to address the healthcare infomiation needs of the visually impaired (Sharby et al. 2015; Holdings 2009).

Let alone these group of individuals, that are relying on parents, carers, and relatives to obtain Information while assisting VIP, it has also become the norm when helping children (Wilson et al. 2003). It is almost unimaginable to help disabled people without the direct or indirect involvement of parents. A study by Mavrou (2011) suggests the importance of professionals working closely with parents to provide disabled people with supportive policies and procedures in using assistive technology (AT). Beverley et al. (2007) also emphasized the inevitable involvement of carers while identifying and addressing the social and healthcare Information needs of VIP. However, this practice must be discouraged as it continuously forces the visually impaired to be dependent on others as they do not believe the infomiation they need is available in an accessible fomiat. It also encourages healthcare professionals to rely on carers when helping VIP.

To remove the awareness barrier, the lack of training among healthcare professionals involved in the healthcare needs of the visually impaired should be considered. Various sources suggests that professionals first need training that increases their awareness of the infomiation needs of VIP (Beverley et al. 2007; Holdings 2009; Mavrou 2011). According to these sources, providers do not understand any of the special needs of the visually impaired since they do not ask them in what fomiat they wish to have their healthcare infomiation. Additionally, the report by Holdings (2009) explains that healthcare providers are not familiar with the guidelines, policies, processes, and systems that are designed to support the healthcare infomiation needs of VIP. Thus, most of the healthcare professionals are not aware of the special needs of the visually impaired and the existence of accessible fomiats if they exist.

Nonetheless, there are insufficient organizational resources, facilities, guide­lines, and support systems. This consequently poses difficulties for healthcare professionals while perfomiing their duties. For example, according to Schiemer and Proyer (2013), the absence of awareness among ministries or school administrations on the special needs of children with disabilities in Ethiopia and Thailand is the reason behind budget allocation problems. The scholars emphasized the need to leverage resources by creating awareness among teachers and parents about the needs of children with disabilities. As discussed in most of the studies, this awareness will help to implement ICT in an appropriate manner. There is lack of nationwide governmental incentives that force disability equity. Disability equity requires the allocation of resources, ICT infrastructures, and systems for disabled people without discrimination on the basis of abilities (Borg, Larsson, and östergren 2011a; Yeo and Moore 2003; Borg, Lindström, and Larsson 2011b).

2.2.3 Executives' apathy

The planning, directing, and coordinating of healthcare services are the major roles of healthcare executives and managers. Further, healthcare infomiation initiatives, such as granting equal healthcare infomiation access for all, should be the concern of healthcare executives. Healthcare managers must be aware of their responsibility in promoting healthcare infomiation access for people with disadvantages.

The planning phase of healthcare services should take patient diversity into account. This will help to achieve a system that incorporates all patients into different healthcare settings. Crawford et al. (2002) mentions the importance of involving patients in the planning and development processes of healthcare services. Involving VIP in the planning phase will help to avoid inadequate development. Failure to involve this group of individuals while planning and developing healthcare electronic systems will result in inefficient systems. Walsh and Antony (2007) showed the existence of inadequate electronic systems by managers, which were intended to support paper systems while attempting to increase patient safety and quality. The authors suggest the need for coordination between managers and clinicians to develop tangible and specific joint action plans.

The direction and coordination of healthcare services will follow once managers have paved the way for the planning phase. Managers need to have enthusiasm for enhancing visually impaired patients safety and quality of care. This can be supported by government incentives that aim to help and coordinate clinicians and managers in making infomied decisions about the utilization of resources (McAuliffe 2014). Having the right policies, guidelines, and processes is also important for directing and coordinating healthcare services for VIP. A report by the British Medical Association (2007) has urged managers to make policies and procedures more flexible and to come up with adjustments for meeting the needs of disabled people (BMA 2007). Such actions can improve overall healthcare delivery processes and at the same time increases awareness among the visually impaired about available accessible formats.

Nonetheless, the above studies have reported that there is a lack of enthusiastic leadership and active incentives from the executives for enabling healthcare information access to the visually impaired, which creates the barrier. There is a need for a coordinated effort between healthcare professional and healthcare managers to work together. There is a positive outcome from the participation of VIP while developing a healthcare service. Healthcare managers should make transparent healthcare information delivery guidelines, policies, processes, and models available to healthcare professionals.

2.2.4 Manufacturers' exclusiveness

The exclusion of the visually impaired by manufacturers during device production is known to generate most of the problems in healthcare information access. The lack of awareness related to disability issues by device manufacturers has played a role in the mass production of technological devices that exclude VIP as consumers (Sachdeva et al. 2015). Manufacturers must re-evaluate their customer segment and come up with a production plan that includes the visually impaired. It is also relevant to demand the participation of VIP in the design process. Universal design implicitly suggests that the creation of devices, ICT environments, systems, and processes must take into account VIP abilities. Devices should be produced that increase their capabilities while working in different circumstances, conditions, and environments (Vanderheiden 1996 as cited in Kleynhans and Fourie 2014).

Smart devices such as mobile phones and tablets have the potential to give freedom to people with disabilities, including the group under discussion, to act independently (Kane, Jayant, Wobbrock, and Ladner 2009). Hence, these technologies can help them to access healthcare information by themselves while keeping in contact with families and caregivers. The problem is that mobile manufacturers are not considering people with disabilities and elderly people while mass producing mobile devices. The user interfaces are often unfriendly and inaccessible for people with visual and motor impairments (Dawe 2007 and Kumiawan 2008 as cited in Kane et al. 2009).

There have been attempts by manufacturers to address users with disabilities by producing special tools and devices such as VIP PAC Mate Accessible Note and the Mobile Speak screen reader. However, these are expensive and they are equipped with reduced features. Thus, the visually impaired is forced to use the mass produced general purpose devices, which have poor usability (Dawe 2007 as cited in Kane et al. 2009).

Therefore, exclusive mass production is a major problem that demands collaboration between governments, healthcare managers, healthcare professionals, and even VIP globally. Having the laws, standards, and regulations that address the information rights of this minority group is not enough. Instead, a pragmatic view of solving the problem must be conceived. One example that is already in practice is called Design for All (Kleynhans and Fourie 2014). Universal usability is the answer, but understanding users in the international market is still a challenge. Building a system using universal design (Design for All) will require the incorporation of user diversity, different types of technology, and gaps in user knowledge (Shneiderman et al. as cited in Jhangianti 2006).

2.3 Accessibility Barriers

The accessibility barriers refers to situations in which healthcare information becomes unavailable to the heterogeneous group of VIP due to social, technological, financial or economic, and legal factors. Technology plays an important role in increasing the accessibility of healthcare information to the visually impaired. It does this by enhancing the usability of devices, products, and services. As a result, technology creates a facilitated ICT environment for a wide range of people with different abilities. It can create properties within a product, service, or facility that can enable people with a wide range of capabilities (HFES 2008). For the visually impaired, there are a number of examples of accessibility barriers that are technical in origin. These include inaccessible information fomiats such as braille, images without text, inadequately described complex images, videos without text or audio, dynamically changing web content, and content logics that are only presented visually.

As long as it remains outside the legal reach of the VIP, it is not enough to know that the healthcare infomiation is out there to be accessed. This brings US to the legal factors that contribute to the accessibility barrier. There are already laws and standards that are intended to defend the infomiation rights of disabled people (ICCPR 1966 as cited in OHCHR 2016a; UN 2006). There is also a convention with detailed applicability guidelines (UN 2006). However, these are not properly enforced and has not been widely applied by governments, manufacturers, healthcare providers, and healthcare professionals. Studies have urged for more government incentives to enforce laws that have the potential to empower the visually impaired while reducing the D3 (Kelly and Clark-Bischke 2011; Cooper, Sloan, Kelly, and Lewthwaite 2012; Sloan and Phipps 2003 as cited in Sachdeva et al. 2015).

Purchasing power and accessibility are directly proportional for disabled people. The financial situations of VIP decide whether or not they can afford to buy assistive technologies (ATs) designed for them. On one hand, their financial capability is greatly affected by employment (Borg et al. 2011b). Being disabled will seriously affect the probability of being employed (Nyman et al. 2012 as cited in Coffey, Coufopoulos, and Kinghom 2014). In their study, Vicente and Lopez (2010) showed that the majority of disabled people are in a lower socio-economic class. This is due to a lack of opportunities in terms of education and training, which consequently affects their income. Because of this they are less likely to make use of the Internet and other paid ICT facilities. Thus, social exclusion is increasing for these individuals, and their limited access to technology is intensifying the VID3 effect.

The social factor is cosmopolitan in its influence and significantly affects the visual impairment digital disability divide. Having the appropriate social healthcare infrastructure is vital for the visually impaired to increase the accessibility of HCI. Employment has a positive impact on social inclusion. Allowing the visually impaired to engage in social activities will help to devise ways to educate and train them and this will alleviate the unemployment problem. Hyde (1996), as cited in Coffey et al. (2014), shares similar thoughts about employment's capacity to increase income and enhance the quality of life and health while reducing social exclusion and poverty. Therefore, the effort to employ VIP will encourage social innovations that create ICT facilities in all sectors of social services including healthcare. At the same time, this will increase healthcare information accessibility (HCIA), which will result in the reduction of VID3.

2.4 Motivational Barriers

Motivational barriers exists due to the complex multidimensional interactions between social, financial, legal, and technological factors. From the earlier discussions, it is possible to deduce that these factors predominantly impact healthcare information availability to VIP positively or negatively. Furthermore, they have a tangible influence on the motivation of these people mainly in their attitude towards the use of technology. According to Sachdeva et al. (2015), an individual's motivational status is the result of three core features, namely attitude, education, and knowledge and skills. De Boeck et al. (2012), as cited in Sachdeva et al. (2015), explains the reason that VIP are reluctant to use assistive technologies. Predominantly, this is because of their negative attitude about the use of technology in the first place. However, after mentioning the negligible effect of attitude on the digital disability divide, the author placed an emphasis on providing opportunities.

Other scholars have also studied the attitudinal differences that the general public and the disabled people hold towards ICT (Vicente et al. 2010). According to Seniorwatch (2002) and Segrist (2004), as cited in Vicente et al. (2010), a great deal of attention is given to the lack of interest and motivation among elderly and disabled people towards ICT, which has contributed to the poor levels of access to the Internet. This is also the underlying reason for the rare usage of technology among disabled people.

The relation between education and motivation is worth studying to minimize VID3. There is a lack of enforcement of the laws that enable education and could create possibilities for employment, thus raising the quality of life in temis of income and access to healthcare services (Sachdeva et al. 2015). This is possible since education serves as a platform to gain the knowledge and skills necessary to be competent in the job market by minimizing the impact of an individual's disability. Studies by Schiemer et al. (2013) and Sachdeva et al. (2015) have shown that education can be facilitated by ICT, which implies that education and information and conmiunication technologies are inseparable, each benefiting the other. Today, the means of conmiunication between people for any purpose and under any field of study or activity are being increasingly facilitated by ICT. Education is no different and, even in developing nations, the use of the Internet and mobile devices is encouraged to benefit society while facilitating learning.

Education activates processes of giving and receiving intended-purpose instructions. These processes, which are forms of studies, are responsible for the acquisition of knowledge and skills. This is important for keeping an individual's motivation high enough to perform important tasks. Scholars have emphasized the importance of knowledge and skills to keep people with disabilities motivated to use technology (Schiemer et al. 2013; Victory and Cooper 2002; Fox and Livingston 2007 as cited in Sachdeva et al. 2015). Knowledge and skills about the use and application of infomiation and communication technologies are highly recommended for parents and teachers who deal with disabled children. Schiemer et al. (2013) shares a similar thought, stating that having only superficial knowledge and skill about ICT will consume a great deal of a teacher's time when planning and preparing the classes.

Even in a scenario where all of these problems have been solved, motivational barriers will still exist. This is true with the omission of all the social, financial, and technological factors affecting the motivation of VIP and further exacerbating the VID3 effect. Motivational barriers can still emerge from the increase in digitization process, which creates vast amounts of healthcare Information. Although this may be present in accessible formats or without duplication, it may be too easy to access too much content, making the visually impaired less zealous. This implies the need for an intrinsic motivation from all visually impaired people to remove completely the VID3; nonetheless, this is only theoretical. Figure 1 summarizes the relationship between the barriers to healthcare Information access and the factors involved in their creation.

Figure 1: The relationship between the barriers to healthcare information access and the factors involved in their creation.

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Source: The author's work, based on the conceptual framework developed by Sachdeva et ah (2013; 2015).

3 HEALTHCARE INFORMATION NEEDS OF THE VISUALLY IMPAIRED

3.1 Visual Impairment and the Digital Divide

A visual impairment is "any degree of vision loss that affects an individual's ability to perfomi daily life tasks, caused by a visual system that is not working properly or not fomied correctly" (Com and Koenig 1995, 452 as cited in Sapp 2003). It is marked by the weakening of an individual's visual capability as a result of disease, trauma, congenital, and degenerative conditions that are incurable by refractive correction, medication, or surgery (Pal, Pradhan, Shah, and Babu 2011).

The major source of the digital divide referred to in this paper is the the digital divide caused by visual impairment. A digital divide in the broader sense is the gap between those who have access to computers and the Internet and those who do not. Today's social activities and services have become increasingly digitized. Thus, there have been efforts from societies and governments to increase the social inclusion of disabled people in the realm of the Internet. However, much of the web over the Internet remains inaccessible for the visually impaired (Adam and Kreps 2006).

As mentioned earlier, there are four levels of visual function: nomial vision, moderate visual impairment, severe visual impairment, and blindness (ICD 2006 as cited in WHO 2016a). Moderate visual impairment and severe visual impairment are categorized under “low vision”. Visual impairment is the generic term given to all types of eye function problems of low vision and blindness. People under the low vision category use vision on a daily basis to perfomi a number of activities. Still, even after vision correction, low vision can interfere with an individual's capacity to undertake daily tasks (CEC 2000 as cited in Sapp 2003). Blindness is the temi used to describe the condition of total sight loss in which the individual either does not see anything or can identify only darkness and light.

The specialized temi legal blindness is associated with an acuity of 20/200 (i.e. the visually impaired person will see at 20 feet what a nomial eyed person would see at 200 feet) and a visual field of less than 20 degrees. Although legal blindness describes a visual impairment, its use is mainly limited to individual eligibility for certain benefits (Koestier 1976, 45 as cited in Kelly et al. 2011).

The visual system is complex in nature, having different components working together to provide visual infomiation to the brain. The major components include the sclera, cornea, iris, pupil, lens, retina, photoreceptor cells, optic disk, optic nerve, and visual cortex (Sapp 2003; Faye 1984 as cited in Kelly et al. 2011). Each of the above

components has specialized functions, and significant damage to any of these components will cause visual impairment. Blindness is thought to exist due to reduced acuity, restricted visual fields, reduced contrast sensitivity, cortical damage, or other ocular dysfunction (Sapp 2003; Faye 1984 as cited in Kelly et al. 2011). According to WHO (2016a), the major global causes of visual impairment are uncorrected refractive errors such as myopia, hyperopia, or astigmatism (43%), unoperated cataracts (33%), and glaucoma (2%). Approximately 90% of people suffering from visual impairment live in developing countries and around 65% are aged 50 and above (WHO 2016a).

Visual impairment is the root cause for the digital divide, but today with the introduction of and advances in ICT, social inclusion is expected to rise. Denial of the truth obscures the root cause of the problem and this makes the problem persistent as it is empowered to overcome decisive attempts that were meant to resolve it, leaving VIP in darkness. Any social constructivist model that undemiines the seriousness of visual impairment and thus the root cause of the digital divide, must be rejected. Instead, just as WHO (2016b) reported, working on social inclusion in terms of socio-economic development is recommended. This can be conceived by coordinating public health actions, making eye care services available, and increasing awareness among the general public about accessible medical treatments for treatable visual impairments. Moreover, a focus on inclusion in the fields of technological design, development, and production is also relevant.

The digital divide is a complex and multidimensional phenomenon that exists between and within countries (Bertot 2003 as cited in Sachdeva et al. 2015). The previous chapter discussed the major barriers involved in the creation of VID3, and there are a number of possible actions that could help to resolve it. First, increasing awareness among visually impaired patients, healthcare executives, healthcare providers, and manufacturers (i.e. the need for special and intelligent design, development, and production in order to minimize social exclusion by increasing inclusion in the production process). Second, to tackle the accessibility barrier with the adoption of new ICT technologies such as assistive technologies that are intended to increase social inclusion. Third, to diminish the motivational barrier by encouraging intended-purpose education to boost VIP motivation to use technology. Finally, to tackle healthcare infomiation access barriers, which are illustrated in figure 1, after identifying and resolving technological, legislation, financial, and social factors which are the major benefactors to the creation of the barriers.

Healthcare Information is important for visually impaired people to lead a healthy life. ICT devices, assistive software applications, and the Web together with the Internet are the major components of technology that need serious intervention to make them suitable for visually impaired people and to eradicate the VID3. The use of assistive technologies can play an important role in delivering alternative formats to the patient.

3.2 Assistive Technologies for the Visually Impaired

Those concerned should ask if the increased reliance on IT tends to continuously exclude people with disabilities whenever new developments occur. Thus, governments and blind institutes should work on the development and availability of assistive or adaptive applications and technologies. After the UN CRPD in 2007, there has been a rise in the development of affordable assistive technology in Europe. The UN CRPD aims at ensuring the rights and fundamental freedoms of disabled people by making assistive technologies affordable (Borg et al. 2011a; 2011b). Assistive technologies (ATs) include assistive, adaptive, and rehabilitative devices that are intended to support people with disabilities when performing activities. One of the most important practical applications of assistive technologies is in the arena of the Internet (Wills, Moumtzi, and Vontas 2010). Assistive technologies can reduce the barriers caused by disability when accessing the Internet and help improve lifestyle and achieve greater equality (Pal et al. 2011).

There are a number of useful assistive technologies for VIP, ranging from low- cost walking canes to expensive ICT devices. The visually impaired are a heterogeneous group, so depending on the severity of vision loss, the types of assistive technologies and output formats varies. The output fomiat could be visual, auditory, or tactile. For example, text and image magnifiers are suitable for low-vision, tactile assistive technologies are reconmiended for blind and legally blind users, and tactile are used by deaf-blind users. The general purposes of these technologies include navigation and communication. Depending on the role of the assistive technologies, there are three major categories, namely back-end, input, and output.

Back-end tools perform operating system or application layer computing task such as translating scanned texts into machine language. Optical character recognition (OCR) does exactly this and is used together with other output technologies such as magnified text displayers and synthetic speech generators. The other set of useful back­end tools for VIP are braille translators, which are applications that bridge the operating system and braille output devices such as braille printers and displayers by creating braille readable files (NFB 2016). The description of OCR and braille translators, the major products available, and the cost range are provided in Table 1.

Table 1: Back-end assistive technologies for the visually impaired.

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Table 2: Input assistive technologies for the visually impaired.

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There must also be an interface between smart electronic devices, such as computers, and VIP in order to give instructions to the devices.

[...]

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Title
Healthcare Information Needs of the Visually Impaired. Bridging the Visual Impairment Digital Disability Divide
Grade
4
Author
Year
2017
Pages
86
Catalog Number
V367029
ISBN (eBook)
9783668461314
ISBN (Book)
9783668461321
File size
1058 KB
Language
English
Tags
healthcare, information, needs, visually, impaired, bridging, visual, impairment, digital, disability, divide
Quote paper
Fissha SeyoumTeshome (Author), 2017, Healthcare Information Needs of the Visually Impaired. Bridging the Visual Impairment Digital Disability Divide, Munich, GRIN Verlag, https://www.grin.com/document/367029

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