Dignity is a broad and complicated notion that can be used in legal, religious, bioethics, scientific and political contexts with different meanings. The term dignity signifies that a person has a birthright of being respected and treated morally and ethically by others. Dignity implies that people should be treated in such a manner that they feel their value and worth as individuals within the societal context (Soulen and Woodhead 2006). Dignity can be elevated and alleviated by several factors in a healthcare facility. These factors include the facility culture, surroundings and environment, attitudes and behaviour of caregivers and the practice of care being carried out in the facility. People feel more comfortable, confident and in control for making various decisions on their own in the presence of dignity but if there is a lack of dignity they may feel discomforted, devalued, embarrassed and humiliated (Weisstub and Pintos 2007). “Dignity is concerned with how people feel, think and behave in relation to the worth or value of themselves and others. To treat someone with dignity is to treat them as being of worth, in a way that is respectful of them as valued individuals” (RCN, 2008).
As dignity creates a sense of comfort and control, it is quite important that caregivers in medical institutions realise the importance of dignity while giving care to adults with learning disabilities. The proposed research will analyse the literature associated with dignity in care for adults with learning disabilities in the United Kingdom.
The study Aim:
The primary aim of the proposed research is to analyse the meaning, perceptions and quality of dignity in healthcare with respect to adults who have learning disabilities in the United Kingdom and study the range of healthcare services available for adults with learning disabilities.
The Study Objectives:
To assess challenges of access, inclusion, choice, attitudes and legislation faced by adults with learning disabilities in healthcare.
To determine whether dignity in care for adults with learning disabilities exists in reality as proposed and promoted by the UK Department of health or not.
To understand and compare the types of health care services offered and available to adults with learning disabilities.
To analyse the quality of healthcare provided to adults with learning disabilities in the United Kingdom and inequalities faced by them.
The following section of the research proposal will discuss the literature as methods and methodology used to achieve the research aim. As it is systematic literature review in general and as it used to this study in research particular.
Research methodology is an important aspect through which researches are conducted. A research methodology will actually depict that what is the appropriate approach of conducting a research and which research strategy will be applied in this research. In the similar manner it would also depict that which data will be collected for the research and how it will be collected.
This entire research would focus on learning disabilities with adults and the issue of dignity will also be addressed in this research. The main objective of this research is to understand the issues of meaning, perceptions and quality related to learning disabilities and how dignity of these individuals is affected. The primary method that will be utilised in this research is based on systematic literature review which is useful for several reasons such gives a genuine, clear idea about the issue being studied.
This method is implemented in this research because it would definitely be helpful because of several reasons. First and the foremost reason is that it would give a clear about the issue that is being studied. Wolf (2008) presented an idea about that systematic literature review that philosophy of science, development of health related materials etc can be analysed through systematic literature review. In the similar manner it gives a genuine and a clear idea about the issue that is being studied. Through this approach findings can be properly analysed and systematic literature review helps the researchers in the decision making process. Wolf (2008) believed that through this approach the information that is collected for this research can easily be summarised. The benefits of this approach would be that past researches can easily be utilised and this would definitely reduce the cost of researching. Another important factor for choosing this approach is the benefit of time that is attached with systematic literature review.
According to Britton and Jonsson (2004) systematic literature review is actually a cost effective approach for conducting a research. Both the researchers agreed with Wolf (2008) that generalisation and collection of data in this approach is quite simple and easy as compared to other approaches. Therefore, it can be said that because of these benefits this approach of systematic literature review is selected for this research.
Ethics is the term used for differentiation of right over wrong, good over evil and signification of justice or equality in the general behaviour or actions of individuals in a society (Hinman 2007). Confidentiality and privacy of individuals participating in a research is quite important especially if the research topic is quite sensitive as the case is with dignity in care for adults with learning disabilities. The researcher needs to understand and realise the seriousness of ethical issues and considerations in such a research. Although there is a danger of participants being named or personal information being compromised, the approval from the ethical issues committee is not necessary, as the proposed study will only present a systematic literature review of the data already accessible by public. The information collected in the proposed research will only be used for research purposes and real identities will be replaced by codes or false names when required. The following section provides an analysis of literature relevant to the research topic that will be used in the proposed research. In this research proposal, there is no need to seek the prior approval of the research ethical issues committee because the study will be beleaguered to summarise the related literature only. All the subjects included as a part of the literature review and studied / observed are free from any such biases. This research does not use any kind of personal information of patients or people suffering from learning disabilities and hence there is no incidence of violation of rights on moral or ethical grounds.
Study of the Literature:
According to The UK Department of Health (2001) learning disability is a combination or collection of several disabilities and disorders. These disabilities may include disability to understand new information or skills, impaired function in society and an onset of any disability that started before adulthood and had a lasting effect. Learning disability or intellectual disability also referred to as learning difficulty in the United Kingdom is quite difficult to explain as it covers a broad collection of disorders or disabilities that people may face.
These disabilities include but are not limited to challenges in processing information, understanding written or spoken language and other challenges that may affect quality of life (Corley and Taymans 2002). This notion by Corley and Taymans (2002) is backed by Turnbull and Chapman (2010) who suggest that people with learning disabilities face several problems in understanding and processing complex information and face challenges in developing new skills. These descriptions of learning disabilities indicate that adults with such disabilities may have difficulties in processing information in several social circumstances including healthcare. This implies that adults with learning disabilities will have a higher degree of healthcare needs as opposed to people with no learning disabilities at all.
McGrath (2010) argued in an extensive literature review that people with intellectual disabilities have greater healthcare requirements as compared to the general population. While explaining the nature and intensity of these healthcare needs he argues that the health care needs of people with intellectual disabilities are more complex in comparison with the general population and can result in premature death, which could otherwise be prevented through effective care. This argument by McGrath (2010) is also backed by several other researches conducted in the context of healthcare needs of people with learning disabilities (Michael 2008; Leyshon et al. 2004; Cooper, Melville and Morrison 2004; Paxton and Taylor, 1998; Nocon, Sayce and Nadirshaw 2008). Gaskell and Nightingale (2010) also agree with McGrath (2010) regarding the greater healthcare needs of people with learning disabilities. They suggest that healthcare needs of adults with learning disabilities tend to be higher in comparison to the general population due to a variety of reasons including visual and hearing impairment, challenges in mobility, heart conditions, diabetes and osteoporosis.
The greater needs for healthcare of adults with learning disabilities are also perceived by caregivers as Vecchio, Cybinski and Stevens (2009) in their study analysed the effect of disability on needs of caregivers. They implemented descriptive statistics and regression analysis to conclude that caregivers of adults with disabilities indicated that they required assistance while providing care to such adults. It was also concluded in the study that the needs of adults with learning disabilities were even greater than the needs of adults with physical disabilities with respect to healthcare (Vecchio, Cybinski and Stevens 2009).
Adults with learning disabilities face several challenges with respect to societal factors including unethical treatment, abuse, undue pressure in interpersonal communication and biasness from the general population due to their specific disability (Slater 2005). Slater (2005) argued that the most prominent challenges with respect to societal factors in healthcare were neglect, poor treatment and abuse by caregivers. He argues that adults with learning disabilities have every right to dignity in life as the general population and should not be subject to abuse due to a specific disability. The Department of Health (2001) provides a clear strategy regarding treatment and care of elderly people especially when they face challenges due to learning disabilities. The recommendations presented by Slater (2005) are in line with the department of health framework with respect to poor treatment and abuse. The framework clearly outlines that dignity should be a top priority in healthcare where people should be treated in an ethical, moral and respectful manner. The importance of dignity and equality in healthcare services is iterated by another report of The Department of Health (2002) by implying the importance of fair access to care services irrespective of age and any disabilities a person may have.
Philp (2007) recommended that dignity in care should not be an afterthought and caregivers should understand and realise the importance of dignity in healthcare of adults with learning disabilities. He suggests that caregivers are very busy and they need to incorporate dignity into the overall framework for providing care. In his study, Philp (2007) emphasised the need for treating adults with respect and integrity while giving them a sense of freedom and control over their actions and behaviour. He concluded that there are various forms of abuse and caregivers need to provide care with thorough understanding and realisation of dignity in care of adults with learning disabilities (Philp 2007).
Holland (2000) on the other hand, analysed how ageing affects people with learning disabilities with respect to social, psychological and biological issues. He argued that adults with severe learning disabilities faced more challenges in later parts of life with respect to services as compared to adults without any disabilities. He concluded in his study that gaps were present in the healthcare and social services provided to learning disabilities and the standards established by the department of health (Holland 2000). This implies that albeit healthcare providers may focus on providing the most effective quality of services but improvements can still be made to make the quality of services more effective especially with respect to dignity in care.
Batesa and Davis (2004) in their study of social inclusion and services for people with learning disabilities presented several societal challenges faced by adults with learning disabilities. These challenges include hindrance in local community participation, perceptions of general population, problems in safety and trust, limited access to social networks and limited access to services being offered. The study indicates that these challenges are faced by adults with learning disabilities mainly due to the perceptions of community and general population with respect to these people. The research concludes that social capital concept provides an effective model for services that focus on promoting social inclusion of adults with learning disabilities (Batesa and Davis 2004). The concept of social capital, which is based on social networks, and standards of trust and reciprocity Batesa and Davis (2004) can also be implemented in healthcare for adults with learning disabilities for better outcomes.
Health care services are of utmost importance to individuals who are suffering with different learning disabilities. McGrath (2010) believed that people with learning disabilities needs health checks to monitor the discrepancies they have. Annual health checks is a type of health care service that is offered and available to adults with learning disabilities. Usually, people who are facing these difficulties are less likely to receive continuous screening and they have less frequent routine checks. That is the reason why annual health checks should be offered by different health care institutions so that they can benefit from it in both the short and the long run. However, a concern is that whether these health checks are needed or not because if they are not viable enough so there is no need to have an exercise that would engage them in such activity. Albroze (2005) discussed that these annual health checks are very important because they assist the patients in every aspects and people who are suffering from these difficulties can gauge that what is their current situation. People who have learning disabilities usually live in communities and they have the right to access different mainstream health care services.
Deshler, Schumaker and Bulgren (2001) discussed that individual importance should be given to people who are suffering with learning disabilities and this can be considered as a health care service. Nurses should be effectively trained in this regard and they should help the individuals who are facing learning difficulties. These researchers also believed that equal health care services should be provided to patients who are suffering from learning disabilities. In the similar manner disability awareness should be given to them in different regards like trainings and workshops should be organised so that they can easily benefit from these activities. Certain special health care services should be allotted to those individuals that have complex and special needs (Bergmark, Parker, & Thorslund, 2000). In the similar manner, certain action plans should be developed for this cause so that all these health care services would be implemented in a proactive manner. Besides certain annual checks individuals suffering from learning disabilities should be offered regular checkups. This will provide an equal opportunity to learn about their health and they can lead a happy and a prosperous life. Certain picture-based books should be provided to them so that they can learn how they can face different complex situations (Deshler, Schumaker and Bulgren 2001).
Emerson, Davies and Spencer (2005) analysed that learning disability in adults is a condition that is quite long lasting. A survey showed that about 62% of all the people who are suffering from this disability live with their parents or with their relatives. Similarly, 30% of the people especially adults live in certain form of residential care or they live with people who are also suffering from learning disabilities. However, only 7% of the people live with their partners or they live alone.
There are different inequalities faced by adults when they are receiving health care facilities. Michael (2008) believed that at times people receive unequal health care treatment and this can be considered as an important issue for people who are providing learning disabilities and for those who are accessing it. People that are facing learning difficulties are not always offered the same level of services and treatment as the general population. People and health care service providers assume certain things when they are dealing with individuals facing learning disabilities (Kuntz, Minnes, Garcin, Martin, Lewis, & Holden, 2005). In the similar manner the routine health care services received by these adults over the year in the United Kingdom is patchy too. Finally, people who are suffering from learning disabilities as not served and perceived as a priority (Michael 2008).
Cooper, Melville and Morrison (2004) believed that people who are facing learning difficulties face unequal atmosphere. They are not treated as equal citizens in many conditions and this creates a sense of inequality in them. People with learning disabilities are discriminated in the society and there are different health care professionals who do not understand much about learning disabilities. In the similar manner many professionals in the society are not familiar with the laws associated with capacity to consent. There are certain professionals who are aware with this scenario but most of them do not consult the family of these individuals who are suffering with learning disabilities (Corley and Taymans 2002). Individuals that are suffering with learning disabilities may not understand the significance and importance of health care screening or it is highly probable that they may not recognise the symbols of ill health. This factor might create issues for the carers in both the short and the long run. Therefore, people with learning disabilities should be dealt with extreme care and the level of dignity should be maintained so that they can lead a healthy and a prosperous life.
The primary aim of the proposed research is to analyse the issues related to dignity in healthcare with respect to adults who have learning disabilities in the United Kingdom and study the range of available healthcare services. This primary aim will be accomplished by achieving several underlying objectives. All the researches that were analysed in the literature review depict that adults with learning disabilities face several challenges especially with respect to dignity and they should be dealt with extreme care. There are certain discrepancies and difficulties in this regard and there should be a proper equal approach adopted to care for adults with learning disabilities. It was also stressed in this research paper that dignity of these individuals is the main issues and once the dignity of these individuals are present they can live with self respect in the society.
Relevance to Practice:
The entire research would be quite useful in enhancing the level of dignity in adults who are suffering from learning disabilities in United Kingdom. However, one of the major points that should be focused by different agencies and social workers would be how fast and effectively they can implement all these processes. A significant amount of research has been conducted in this regard but the reviewed literature shows several gaps in standards laid down by government health authorities and current practices. The proposed research will be helpful in filling these gaps. The proposed research would be beneficial for adults who are facing with learning disabilities and it would be beneficial for caregivers who are planning to implement these processes.
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