Essay Title: A critical examination of the Learning Disability Nurse (LDN) role in supporting an individual/young people with epilepsy and learning disabilities.
This study examined epilepsy in young people, since the disorder remains a major chronic neurologic disease and affects many of the population between childhood and old age (Smeets et al., 2007). However, if there have been substantial improvements in understanding the underlying pathophysiology and disease management, epilepsy remains an important condition as it has extensive financial, health and social implications as well.Stigma and reduced quality of life both for the patient and for families or carers are strongly associated with the condition (Jennum, 2011).
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This research addresses the adolescent stage of the disorder, as epilepsy has a major impact on a teenager's quality of life.The youthful stage of life is often complicated and very fragile if a person has epilepsy as well (KE et al., 2015).There is a greater risk of exposure to light, alcohol, lack of sleep, and so on. during the young development stage and this increases the risk of a seizure (WHELESS and Kim, 2002).Considering its significance in the teenage phase of epilepsy, this research is mainly concerned with exploring the role of the learning disability nurse in assisting teenagers with epilepsy and learning disabilities.
Epilepsy is seen as a chronically impaired and socially isolated chronic condition. It has also physical, emotional, and socioeconomic implications. The life of an individual's epilepsy and intellectual disability faces many unique challenges according to Prasher and Kerr (2008).This article aimed to investigate the epilepsy of young people with learning impairments as well as the psychological, ethical and social ramifications of the disorder and treatment.Through adequate treatment (i.e. history, assessment, research and aetiology) and management, it is possible to significantly reduce the social impact, isolation, stigma, and low self-esteem experienced by people with epilepsy. (Prasher and Kerr, 2008).
Education and learning concerns for young people with epilepsy are well known. in comparison research Elliott et al. (2005) found that young people with epilepsy have a lot of social problems than children who are not affected by epilepsy.Such social problems include a sense of social alienation, contradictory emotions and victimisation. Children with epilepsy are very affected by their intellectual capacity which result in academic underperformed.According to Hamiwka et al., (2011) reports on deficiencies in specific areas of thought and cognitive capacities such as concentration, memory, organisational skills and academic performance.Training and curriculum approaches should take the diverse learning styles of children into account to help children with learning disabilities so as to use intensive interventions such as repetitive teaching techniques to improve the advancement of literacy in children(Young‐Southward, 2016).
Epilepsy in people with learning disabilities is severe compared to the general population. Epilepsy impacts a teenager's life many times adversely. Epilepsy affects teenagers such as peer interactions, education, social life, career progression, etc.Young people with Epilepsy may suffer from emotional disorder involving depression, cold, anxiety and frustrations.Teenagers with epilepsy feel highly socially excluded and their cognitive and academic functioning is interrupted(Elliott and Mares, 2012).
Apart from the problems of studying. Kids with epilepsy often face emotional and behavioural problems. For example, in 34.6 percent of adolescents with seizures, Williams (2003) reported psychiatric disorders, compared with only 6.6 percent of the general population. Williams (2003) identified increased depression, anxiety, irritability and hyperactivity among the emotional and behavioural challenges. Both issues indicate that epilepsy is a much more complex disorder with mental difficulties apart from the seizures.
One important point often discussed is that the use of high levels of some antiepileptic pharmaceutical products frequently results in changes in behaviour such as verbal aggressiveness, irritability or physical. Most parents and carers have reported situations where they can detect changes in their child's mood, which usually occur without warning, and which can last for a period of time (Taylor et al., 2011).
The social and moral dimension of epilepsy in young people is also important for the person and for the family. As a young person, it is almost unavoidable, in the process of growth and development, to engage in physical and social activities with others. According Yet Saburi (2011) pointed out that epilepsy and its problems associated with it, such as stigma, also led young people to abstain from social, academic and recreational activities. Sometimes the reasons for separation are the safety concerns of the child that may allow the child to be excluded from school activities. Families are also impacted by restrictions on leisure programmes. Taylor et al. (2011) observed that children's parents with epilepsy had shown a lower time spent away from home for recreation than a control group and this impacted their living standard.
According to Duffy (2011) pointed to the high incidence of stress, anxiety and depression in parents of children with epileptics, which are the most studied category and are particularly important in parents of teens with refractory epilepsy. Some family members are at high risk of adverse emotions. Taylor et al., (2011) say that a relatively poor quality of life was shown by most parents of teenage kids with both epilepsy and co-morbidity. Particularly mother have been found to be involved in epileptic care of their children and are subsequently prone to epilepsy-related anxiety, stress and stigma.
Actually, stigma and prejudice in epilepsy cause a lot of stress that affects the emotional and adaptive behavioural responses of young people. A recent study has shown that parental support and peer support continue to be an important factor in teens with epilepsy health and wellbeing (Fayed et al., 2015).
2.0The role of the Learning Disability Nurse (LDN) in supporting young people with learning disabilities.
The Department of Health (2012) reports that people with learning disabilities are not necessarily seek for services and often face a lot of obstacles when it comes to getting quality care. More studies have shown that learning disabilities in Black and minority ethnic groups are significantly high compared to the rest of the population (DH, 2012 and the Disability Commission, 2010).
People with learning disability require specialised care and this has increased the need for the Learning Disability Nurses (LDN) services. Such programmes are designed to provide support in order to improve the integration of all, particularly people with complicated and ongoing disabilities, in the community.
Certain forms of communication problems are common for people with intellectual disabilities. According to Northway et al. (2006) have found that these communication problems can lead to problems in history and research. The ability of the individual to function properly and to take healthy decisions also impedes intellectual disability.
As noted above, children with epilepsy are highly vulnerable to problems with care, learning disability and cognitive problems such as loss of memory and poor skills for solving problems. While seizure drugs are known to minimise seizures, they can have side effects on teenage thoughts and cognitive functions (Speechley et al., 2012).
The expectations and ambitions of people with disabilities, family members and the larger community were dramatically changed as a result of the deinstitutionalization strategy of the UK Government. A government white paper known as "Valuing Children" (DH, 2001) is also being established to create the basis for the strategy for learning disability. It drives LDN research and has four basic foundations: freedom, equality, preference and inclusion (DH, 2001).
Learning disability nurse (LDN) provides strategic advice and assistance to people with learning difficulties and epilepsy. The LDN generally works daily with young people through the use of various techniques needed to improve their intellectual capacity. Furthermore, the LDN conducts individual and home visits alone or as part of a multidisciplinary team, including pharmacists and doctors as necessary. LDN plays an important role in ensuring that service users and their families can understand the situation by providing information, training, and guidance. One of LDNs ' a key role is to evaluate the service user's skills and to function according to guidelines on the delivery of care, rescue medications and assistance to reduce the risk of diagnostic duplication (RCN, 2009).
Today the learning disability nurses are currently working in many institutions, including the NHS, private and local authorities. Usually they work in multidisciplinary teams and multi-agencies, which often require other skills to work properly. The RCN (2009) states that there are six main areas of expertise to be imbued by the LDN: communication; the growth of people and health, security and safety; efficiency, enhancement of service; and equality and diversity.
In the sense of teen epilepsy, the task of learning disability nurses should be focused on making it possible for children with learning disabilities and epilepsy to lead their independent lives through a comprehensive, co-operative and co-ordinating approach to successful planning and condition management. This ensures that the learning disability nurse be in a position to provide guidance and support to everyone involved in service users management.
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The Children and Families Act 2014, which provides for special educational requirements and disability support in the UK in health and education, social care and social assistance is essential to the legislation that supports treatment for young people with epilepsy and learning disabilities. The act provides guidance for people and organisations working with children with learning disabilities, including special training requirements and disability code of practise for children and young people aged between 0 and 25.
Given the importance of learning disabilities and epilepsy, various initiatives and practical guidelines have been created to support the well-being of people with learning disability. For example, the Equality Act 2010 has been introduced to try to combat disability discrimination. The statute also against employers from discriminating against people with disabilities. The Act provides a wide range of benefits including the right to equality of treatment and earnings alternative benefits, such as work and support, self-support, disability living allowance and so on.
Many approaches can be taken to help people with learning disabilities in recognising their condition and self-management of epilepsy in collaboration with other clinicians (Dannenberg et al., 2016). Beavis et al. (2007) reported that many data support the use of anti-epileptic drugs in order to reduce the incidence of seizure in young people with learning disability and that the secondary effects are similar to those of the general public. During the course of care planning and support, the LDN's role in infant, parental and caregivers is extremely important given the complex nature of epilepsy among teenager with learning disabilities (Southward et al., 2016).
Although the learning disability nurse plays different roles in ensuring that young people with learning disabilities are safe and independent, certain legal, ethical and moral problems are connected with this role. There are certain legal, ethical and moral concerns associated with these positions. As a result of aspects of the healthcare process, legal problems occur, in which the nurse is held responsible for decisions about the protection and well-being of the patient (McCarron et al., 2014). In addition, Davies and Janosik (1991) advise that LDN must be mindful of three legal concepts, including negligence, abuse and liability.
In comparison, psychiatric, legal and ethical practitioners are expected to screen patients for health problems such as depression, epilepsy, and so on. Inevitably, depending on structured approaches alone, the effectiveness and validity of those techniques might lead to ethical dilemmas (Southward et al., 2016). In addition to ethical principles such as autonomy, judges and integrity have been integrated into treatment. Therefore, a number of ethical and professional practises have been established within the national professional bodies to guide nurses ' work (Boyd, 2008).
The LDN provides teachers with additional support, helps children communicate with other people and helps them to support their physical and personal needs. It is also a key element in education that helps them to meet their needs. Most children usually have various specific criteria apart from epilepsy. Therefore, LDN plays an important role in providing expert advice and support for other practitioners and the children (Boyd, 2008). The LDN works for example with teachers, school nurses, and any specialist who can help care for or handle the needs of children with epilepsy.
Given the wide range of adverse psychosocial, cognitive and life quality consequences, the treatment of epileptic children also has moral problems.
One area where ethical problems can occur is communication about the situation. The LDN will convey the diagnosis to them with a rational approach when it interacts with parents and carers of children. The impact of seizures and the conditions of epilepsy in the child's life must be properly explained to the family and the types of adjustments needed to ensure proper function in school (Corey, 2013).
It is an important matter for professional integrity and patients ' confidence that the LDN must cooperate with other professional groups. Sometime the competition among professional groups often hinders the effectiveness of the provision of care. Because the most experienced and novice participants can struggle with control, and this may impede a smooth and multidisciplinary team effort (The Daly 2004).
As the philosophical dimensions of care vary, the different groups of practitioners may have different ethical and moral standards for providing care. Nonetheless, new aspects of care delivery such as skill-mixing and patient-centred care strategy will make use of the service user's authority to direct the goals of the various professionals working within the team (Daly 2004).
In addition, there can also be a significant ethical dilemma between the service user's need for freedom of choice and technical support. Ethical problems occur when using technical technology, such as adaptive tools that LDN may find suitable for the patient to assist his intellectual disability. Parette and Biervliet (1991) referred to the freedom of preference and to the right of the service user to decide the technology to improve his situation. The use of technology should therefore be the adolescent's decision regarding epilepsy rather than the service provider. Further warnings against using technology are placed in Parette and Biervliet (1991), as they aim to eliminate social interactions between individuals and the adolescent psychosocial network.
The problem of freedom of choice is closely linked to the philosophy of treatment and technology. Treatment usually requires an association with others. Schemmer (1988) argues however that success in technical advice on care for life should not replace entirely psychosocial and human experiences but that it was intended to help patients live independently. Thus as a LDN, you must ensure that the mechanism of providing treatment does not legally affect the integrity of the patient.
In this study, the moral, ethical and legal dimensions of LDN work for young people with learning disabilities were also investigated. Although these difficulties that emerge during its work, the essay demonstrates that the need for a skill mixing process and the use of a patient-centred approach will compel various professionals to transcend their differences and work on the basis of the authority and the values of their careers of the service user.
This report shows how epilepsy affects people, their families, and society as a whole in terms of social, cultural, and intellectual consequences. In fact, epilepsy has shown that it can affect young people profoundly by cognizing, falling and fracturing. There is also the pressure on the family or caregiver and on the NHS and on the entire economy.
The psychosocial effects for individuals and quality of life were important in adolescents living with epilepsy, Glover et al., (2017). Since seizures can lead to falling, fractures, soft tissue injuries and headache and so on in young people with learning disabilities epilepsy. Sudden unexplained deaths are also possible.
Therefore, education can be a frustrating experience for young people with learning disabilities. Although they remain concerned about a class seizure and how this can lead to shame in the school environment. Mothers are both worried for their children and concerned for them. That is why the role of a learning disability nurse is extremely important. The LDN is working with other experts to support and also work closely on alleviating fears with teenagers and their families
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