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Chronic Conditions And Disability

In the given case study of Michelle who had an intellectual disability was found dead after being discharged from the hospital on the cool autumn night in the year 2009. Whenever a person's capacity to know and understand at an anticipated threshold and work efficiently in everyday life is limited, this is referred to as intellectual disability (Kliewer, Biklen & Petersen, 2015). Children's thresholds of intellectual disability differ considerably. Children with intellectual disabilities may struggle to communicate their desires and requirements to others, as well as to care for themselves (Mohan & Kulkarni, 2018). Intellectual disability, previously referred to as mental retardation, can affect a person so that he develops and learn little by little or differently than others, making it difficult for them to function effectively in society they live in. As a result, many of them struggle to live a stable life. They face discrimination in society even if they manage to continue living normally (Purugganan, 2018). Bullying and discrimination against individuals with intellectual disabilities are common. Regardless of how well they have done in their daily life or how much they have actually achieved; most individuals see their disability rather than their abilities. It is uncommon to find someone who completely comprehends the thoughts of a person who is intellectually disabled. As they are managed in a very different manner, people with this state of health find it difficult to bond with others (Emerson & Hatton, 2014). Health facilities are very seldom equipped to fulfil the requirements of individuals with intellectual disabilities, and healthcare workers receive little training in this area. Furthermore, we understand that individuals like Michelle with intellectual disabilities frequently encounter difficulties in communication in consultation process; often, a disabled person faces challenges to be taken into consideration decisions related to their health, and continues to struggle to communicate their medical necessities to the person they are visiting (Worthington, 2017). 
 

Shared decision-making (SDM) refers to the procedure by which medical experts and patients collaborate to debate and agree on which care and treatment policies to implement. SDM is becoming increasingly important in health care settings. When there are numerous options for the treatment, patients can be involved in the process of decision-making through SDM. Before making a therapeutic decision, medical practitioners should clearly describe appropriate care or options for treatment and assist patients in evaluating their interests and priorities in the frame of reference of these choices (Noorlandt, et al., 2018). Shared decision making (SDM) can assist in bridging the gap between the kind of care patients desire and the treatment they get. To promote shared decision making for Michelle, the doctors should evaluate and recognise patient value systems, favoured language, and levels and status of health literacy, particularly in patients with intellectual disabilities like Michelle. Patients' potential to use health - related information as well as services is affected by their level of health literacy, which has an influence on health consequences. Values systems differ by culture and also have a significant impact on patient desires for treatment. It is also critical to recognise the language preferred by the patient for communicating effectively. When patients' values, language, and health literacy requirements are acknowledged through culturally and linguistically relevant instructional content at an appropriate literacy level, they will be energised to be more engaged in treatment decisions through SDM (Vahdat, et al., 2014). Patient decision assistance promote engagement of patient and involvement in making decisions related to the treatment. To assist patients in obtaining details on available alternatives related to the decisions, the International Patient Decision Aids Standards (IPDAS) Collaboration advises employing high-quality, unbiased, and evidence-based patient decision equipment. Decision aids can be printed handbooks, videos, or web-based materials intended to assist patients, families, and caretakers in participating in SDM. By offering data on the dangers, advantages, challenges, and alternative options to available treatments, these methods can assist patients specify and interact their values and beliefs to their providers (Bigby, Whiteside & Douglas, 2019).
 

Patient-centred care has been an emerging notion since it was first described by Edith Balint in the year 1969 as "recognising the patient as a distinctive human being." There have been numerous other conceptual models of patient-centred care since then. Patient-centred care has been characterised in a variety of ways, including patient (and family)-centred care, relationship-centred care, personalised care, and user/client-centred care (Santana, et al., 2018). As the concept has gained currency in healthcare discussion and debate, structures for putting it into practise have surfaced. Person-centered nursing frameworks include the Senses, VIP, 6 C's, The Burford Model, and McCormack and McCance's structure. These structures define components such as staff characteristics, communication with team members, care and service synchronisation, the care environment, and the recognition of patient care. These instances offer understanding into efforts to operationalize PCC, individual practise, and healthcare service requirement (Byrne, Baldwin & Harvey, 2019). Nurses are the healthcare workers who dedicate the most of their time with patients and thus serve as their advocates, with nursing professionals handling the care coordination.
 

The core components of person-centred care are respecting the patient. The healthcare providers should have made an attempt to get to understand Michelle as an individual and acknowledge her distinguishing characteristics. They treat their patients' own values, opinions, limits, and points of view. It is critical to not only recognise but also regard these elements of the individual and integrate them into the treatment regimen (Peters, et al., 2020). A person-centred care framework enables the patient to accomplish as many daily tasks as possible on their own. This is critical for empowering the patient's skill progression and instilling faith and trust in the recovery process. However, in this strategy, the individual's limits must be identified and not compelled too much further. To make rehabilitation as seamless and effective as conceivable, all healthcare personnel should coordinate the individual's therapies. This is particularly important for those having received multiple aspects of treatment, as a disorganised plan can lead to confusion, stress, anxiety, or a relapse in recovery (Kloos, et al., 2015). The doctors should have treated Michelle with utmost dignity, compassion and respect. The coroner determined that staff did not purposefully make discriminations against her, but she did relate a few of her actions to the reality that she had an intellectual disability rather than a serious illness. The doctor should have provided personalised medical treatment, assistance, and therapeutic interventions. This is the foundation of person-centred care. It necessitates the doctor to recognise that what tends to work for one patient / client may not work for another. A systematic method may impair their potential to heal or handle their situation appropriately, and may harm their standard of living, based on the personal situations and principles (Taylor, Lynn & Bartlett, 2015).
 
References

Bigby, C., Whiteside, M & Douglas, J. (2019). Providing support for decision making to adults with intellectual disability: Perspectives of family members and workers in disability support services. Journal of Intellectual & Developmental Disability, 44:4, 396-409. DOI: 10.3109/13668250.2017.1378873
 
 
Byrne, A. L., Baldwin, A., & Harvey, C. (2020). Whose centre is it anyway? Defining person-centred care in nursing: An integrative review. PLoS One, 15(3), e0229923.
Emerson, E., & Hatton, C. (2014). Health inequalities and people with intellectual disabilities. Cambridge University Press.
 
 
Kliewer, C., Biklen, D., & Petersen, A. (2015). At the end of intellectual disability. Harvard Educational Review, 85(1), 1-28.
 
 
Kloos, N., Drossaert, C. H., Trompetter, H. R., Bohlmeijer, E. T., & Westerhof, G. J. (2020). Exploring facilitators and barriers to using a person centered care intervention in a nursing home setting. Geriatric nursing, 41(6), 730-739.
 
 
Mohan, R., & Kulkarni, M. (2018). Resilience in parents of children with intellectual disabilities. Psychology and Developing Societies, 30(1), 19-43.
 
 
Noorlandt, H. W., Echteld, M. A., Tuffrey‐Wijne, I., Festen, D. A. M., Vrijmoeth, C., van der Heide, A., & Korfage, I. J. (2020). Shared decision‐making with people with intellectual disabilities in the last phase of life: a scoping review. Journal of Intellectual Disability Research, 64(11), 881-894.
 
 
Peters, V. J., Meijboom, B. R., Bunt, J. E. H., Bok, L. A., van Steenbergen, M. W., de Winter, J. P., & de Vries, E. (2020). Providing person-centered care for patients with complex healthcare needs: A qualitative study. PloS one, 15(11), e0242418.
 
 
Purugganan, O. (2018). Intellectual disabilities. Pediatrics in Review, 39(6), 299-309.
 
 
Santana, M. J., Manalili, K., Jolley, R. J., Zelinsky, S., Quan, H., & Lu, M. (2018). How to practice person‐centred care: A conceptual framework. Health Expectations, 21(2),
429-440.
 
 
Taylor, C., Lynn, P., & Bartlett, J. (2018). Fundamentals of nursing: The art and science of person-centered care. Lippincott Williams & Wilkins.
 
 
Vahdat, S., Hamzehgardeshi, L., Hessam, S., & Hamzehgardeshi, Z. (2014). Patient involvement in health care decision making: a review. Iranian Red Crescent Medical Journal, 16(1).
 
 
Worthington, E. (2017). People with intellectual disabilities twice as likely to suffer preventable death, study finds. https://www.abc.net.au/news/2017-02-08/study-finds-intellectually-disabled-two-times-preventable-death/8248772?utm_campaign=abc_news_web&utm_content=link&utm_medium=content_shared&utm_source=abc_news_web
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