Down Syndrome Patients and the Person-Centered Care

Introduction

Humanity is continuously faced with many problems and diseases that complicate the life of an individual. These can be some small viruses or dangerous conditions that leave an imprint on a person’s entire life. However, diseases associated with the human psyche are far more terrible and problematic than anything else. A person who has problems with intellectual development may not stand out from the crowd. Still, his or her life is combined with great suffering and overcoming incredible difficulties. The world and society are not well adapted to people with mental retardation. The purpose of this essay is to describe such conditions in general and use an example of a specific disease, as well as an analysis of the social model of care and person-centered care.

Intellectual Disability

Intellectual disability (ID) was called differently at various points in history, and at the moment, many terms describe this condition. For example, mental retardation (MR) is an alternative term, but it is used in a slightly altered context. The essence of such a condition is the significant limitations of not only physical but also intellectual functioning (Vissers, Gilissen, and Veltman, 2016, p. 19). An essential factor is that the condition begins before the age of 18, and the most common reason for determining IDs is developmental delays. The official reason for making the diagnosis is an IQ test that showed a parameter below 70 (Vissers, Gilissen, and Veltman, 2016, p. 19). However, the ID has a much deeper meaning than just the lack of IQ.

Making such a diagnosis completely changes the life of both the child and the parents, who are forced to adapt to the new realities. Because ID covers a wide range of possible abnormalities, the severity of a particular disease cannot be estimated only by the IQ coefficient (Crnic et al., 2017, p. 436). Since there are many varieties of IDs, the treatment and adaptation for them vary in each case. It is worth noting that, according to studies, the prevalence of IDs in the world is 1 percent (Vissers, Gilissen, and Veltman, 2016, p. 19). It can also be noted that despite the wide variety of reasons for their occurrence, almost all of these conditions are closely related to genetics (Crnic et al., 2017, p. 436). Due to the complexity of the brain as an organ, even a few mutations that occurred at the stage of its development can seriously affect the entire nervous system, causing an ID.

Down Syndrome

Down syndrome, also called trisomy 21, is a genetic abnormality and one of the most common types of ID. The cause of the disease is the presence of a full or partial third copy of chromosome 21 (Antonarakis, 2017, p. 147). Because of that, the human karyotype is represented by 47 chromosomes instead of 46. At the moment, this type of ID is the most famous and widespread. According to general statistics, a child with Down syndrome is born in one case out of 700 (Antonarakis, 2017, p. 147). This disease is associated with delays in physical development, which is also expressed in specific facial features, as well as a moderate level of intellectual retardation.

Down syndrome affects all societies and all nations, and a child with such a disease can be born in absolutely any family, even with healthy parents. In Ireland, morbidity statistics are even more disappointing than in the whole world – the probability of having a baby with such a condition is 1 in 546 (Caples et al., 2018, p. 146). In total, about 7,000 people are suffering from the syndrome in the country, but it cannot be said that life with this diagnosis is impossible. As practice shows, many families can adapt to the special conditions in which it is necessary to support their children. The main factors contributing to the process are family cohesion and caring for the child (Caples et al., 2018, p. 146). Thus, although a person’s life with this syndrome is significantly complicated compared to the rest of society, with the proper upbringing and care, the patient can adapt and lead a productive life.

The Social Model of Care

However, care for patients should be carried out not only within the family but also at the social and state levels. Programs are being developed to implement such support, and an example of such a design is the social model of care or disability. It is not only a set of measures that help humans with IDs but also a general view of the world (Social model of disability, no date, para. 1). The program offers a slightly different approach to the disease, considering society as a source of barriers for suffering individuals. The problem lies in the inability of the community to accept these people, both physically due to the lack of, for example, ramps for the disabled, and morally due to the presence of prejudice. This social framework was created to help everyone recognize barriers in life and to work together on eliminating them (Social model of disability, no date, para. 3). In addition to physical barriers, such a pattern also takes into account attitudes and preconceptions.

Unlike the medical model, which separates individuals according to their condition, the social model allows people with disabilities to feel like a part of society. That approach is a huge plus of this model, as it helps to improve the psychological state of persons. Although such rhetoric is not entirely compatible with the medical approach to the study of this disease, it can be used to assist persons with disabilities. In this case, various charitable services that follow the program can provide maximum support and free help. Also, the authorities adopt the elements of the method, introducing a common approach to improve the living conditions. In Ireland, such a structure is the Health Service Executive, which provides information and support to patients and their caregivers (Disability Services, no date, para. 1). Thanks to feedback, patients with Down syndrome can count on improved living conditions both at home and in society.

Person-centered Care

However, no matter what measures the state introduces, whatever support various organizations provide, the case of each of the patients remains unique and special. Even with the same disease, two people are in entirely different situations due to their social and economic status. Following this, the concept of person-oriented patient care arose. The essence of this method is the active participation of the patients in their treatment, in the cooperation of the individual with a professional to achieve the best results (Moore et al., 2017, p. 662). Although there are many variations of these models, their meaning boils down to the same thought. Since the patient’s health is the most important for the doctor, the logical decision is to take into account the needs and preferences of the individual in the choice of therapy. With this, the best results can be achieved due to cooperation, communication, and the formation of mutual understanding.

This approach is especially crucial for humans suffering from ID in general and Down syndrome, in particular since people with intellectual disabilities require individualized treatment. Often it is achieved within the family by caring for children and providing them with everything. Professionals should adopt the elements of this approach and put them into practice. First of all, this promises several benefits to the patient, which include, firstly, more comfortable communication with the doctor. The process of communication and the search for treatment can be significantly complicated by the person’s unwillingness to reach them. Such a situation is manifested in pediatrics, but patients with Down syndrome often need a similar attitude because of their insufficient intellectual development. Thus, the adaptation of a person-oriented approach will help them feel more comfortable, which ultimately manifests itself in the form of improved results in treatment and adjustment in society.

Unfortunately, the introduction of the concept into the community does not always go smoothly. Therefore, the attitude of professionals, in this case, is an obstacle to receiving such therapy (Moore et al., 2017, p. 669). However, such a situation can be corrected through popularization and training. Moreover, in the ID environment, the method is much more widespread than in other medical fields. On the part of the patient, it will be sufficient to declare the desire to use a person-oriented method. It is necessary from the very beginning of therapy to work together with the doctor; in this case, it is possible to achieve the best results.

Role of Support Worker

The results of a person-centered program can be a support of physical, social, psychological, and emotional nature. As mentioned above, firstly, close communication and mutual understanding will lead to knowledge about specific stages of treatment. Established contact with a support worker will help an individual emotionally in a problematic situation. Considering how much negativity people with ID have to deal with, they urgently need a positive outlook on the surrounding society. A professional who actively supports the patient from a moral and emotional point of view affects a person in a positive way, which is reflected in improved treatment outcomes (Santana et al., 2018, p. 434). Doctors can listen to patients, encourage them, and help them adapt to severe social conditions. In addition to the above measures of psychological support, specialists can physically help a person complete some tasks that require, for example, precise coordination. These actions go beyond the scope of medical duties, but support workers representing a charitable organization or foundation may accomplish such tasks.

In addition to direct assistance, these workers can also help patients socialize. Specialists may talk about how to build relationships with people about issues of dignity. Workers can contribute to the development of the patient, making him or her more adapted for independent living in society. These tasks are optional for doctors, but this does not reduce their importance. Family members can perform a similar function; however, specialized workers have the knowledge and specific training that allows them to communicate more effectively with people with IDs. Thus, their work is similar to the work of a psychiatrist who explains the situation to the patient using specialized knowledge. The field of activity of these workers is multidimensional and includes both psychological assistance and physical tasks. Specialists of this profile can provide high-quality, qualified, and multifaceted support to patients with ID.

Conclusion

Among the many different diseases associated with mental retardation, Down syndrome is one of the most common and known. In various countries, the level of this disease varies but can reach approximately one case per 500-700 people. However, the widespread prevalence does not contribute to the ongoing improvement of conditions for ID patients. Fortunately, several programs fill such a gap; for example, there is a social model of care that helps people with mental illness socialize. Although it is not as widespread as the medical approach, its elements are supported and implemented by the state, which enables improving living conditions in society.

Secondly, a great help in working on this disease is a person-oriented approach that allows taking into account the interests of the patient. This approach, especially in cooperation with a support employee, allows achieving great results, much larger than a simple observation by a doctor. A support worker can provide psychological, emotional, and even physical assistance to a suffering person. In combination with the social model of care, a specialist and a person can successfully work together to acquire the skills necessary for a productive life in society. That is why this type of care should be actively promoted by covering it in the media, as well as through discussions with patients with severe IDs.

Reference List

Antonarakis, S.E. (2017) ‘Down syndrome and the complexity of genome dosage imbalance’, Nature Reviews Genetics, 18(3), pp. 147-163.

Caples, M. et al (2018) ‘Adaptation and resilience in families of individuals with down syndrome living in Ireland’, British Journal of Learning Disabilities, 46(3), pp.146-154.

Crnic, K.A. et al. (2017) ‘Intellectual disability and developmental risk: promoting intervention to improve child and family well‐being’, Child Development, 88(2), pp. 436-445.

Moore, L. et al. (2017) ‘Barriers and facilitators to the implementation of person‐centred care in different healthcare contexts’, Scandinavian Journal of Caring Sciences, 31(4), pp. 662-673.

Disability Services (no date) Web.

Santana, M.J. et al. (2018) ‘How to practice person‐centred care: a conceptual framework’, Health Expectations, 21(2), pp. 429-440.

Social model of disability (no date) Web.

Vissers, L.E., Gilissen, C. and Veltman, J.A. (2016) ‘Genetic studies in intellectual disability and related disorders’, Nature Reviews Genetics, 17(1), pp. 9-18.