Advocacy, Activism and Resistance

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Nov 24, 2024

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1 Advocacy, Activism, and Resistance in Nursing Student’s Name Institution Course Instructor Date

2 Advocacy, Activism, and Resistance in Nursing This paper will critically consider and analyse approaches to advocacy that challenge legislation, policies, and practices based on a patient’s digital story and case notes. For this paper, we use the case of Chris Smith, a 28-year-old previously independent man who got hospitalized with a later diagnosis of Guillain-Barre Syndrome. This is a serious but rare medical condition that affects the nerves. Guillain-Barre Syndrome primarily affects hands, limbs, and feet, resulting in pain, numbness, and weakness of the limbs. Essentially, this condition has no known cause, but it can be prompted by bacterial or viral infections. Even though Guillain-Barre Syndrome majorly affects the feet and limbs, Chris’ body was entirely paralyzed. He could not verbally communicate, making him depend on the care providers for individual care. Chris was in this locked state for four months and was admitted as an inpatient. During his time at the health facility, he was discriminated against. He was handled with no dignity and respect. Using this case, the essay will assess the repercussions of institutional policies and procedures on a patient’s experience during care delivery. The paper also recommends institutional policy changes to influence future healthcare practice. Ultimately, the role of care providers as advocates will be addressed. The Nursing and Midwifery Council in code (NMC, 2018) requires care providers to prioritize patients, put patient’s interests first, have compassion, ensure the safety of patients, and deliver patient-centred care (Glasper, 2019). Unfortunately, Chris narrates being treated without respect and dignity. He could not communicate verbally but could make sounds to respond to pleasure or discomfort. However, despite Chris’ ability to communicate using sounds, he was not informed regarding his care and progress, with most decisions made without his consent. For instance, Chris narrated that at some point, his blood sample was not only taken without his

3 consent but it was also done when he was asleep. This act did not adhere to the Human Rights Act (1998), which is every patient’s fundamental freedoms and rights (Cole, 2022). These freedoms and rights are founded on fairness, dignity, respect, autonomy, and equality. Care providers are viewed as public authorities when delivering care to patients and must adhere to the Human Rights Act (1998) (Cole, 2022). Chris, as a patient, is entitled to be free from torture, degrading, or inhuman treatment, yet he was inhumanly treated. Chris used a poorly cleaned bedpan when his family visited, an occasion that he recounts as embarrassing. Here, Chris was not treated with no respect and dignity, which caused him emotional harm and humiliation. As stated in the Equality Act (2010), people with disabilities are lawfully protected against discrimination, and Chris, who is currently disabled, is protected under this act (Berghs et al., 2019). Every disabled patient must be directly consulted regarding their care, and every arrangement should be organized based on their preferences (Berghs et al., 2019). Every patient should be treated equally and respectfully, yet the nurses took Chris’ blood sample without obtaining his consent. His comfort was also not considered since the process was done when Chris was asleep. According to Devakumar et al. (2022), discrimination is significantly associated with adverse psychological outcomes. Additionally, Berghs & Dyson (2022) report that discrimination founded on a patient’s disability contributes to more mental discomfort and poor psychological functioning. Based on these studies, the discrimination Chris faced at the hands of the nurses could lead to mental issues such as low self-esteem, anxiety, and depression. The NMC (2018) mandates nurses advocate for patients by opposing discriminatory attitudes and behaviours against them. It is the responsibility of every healthcare provider to identify discriminatory behaviours and confront them to deliver quality patient care (Glasper, 2019). Additionally, nurses are mandated to uphold the principles of equality and diversity when

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4 handling patients, their families, or friends. It is important to embrace evidence-based practice to confront discriminatory practices in healthcare. Moreover, nurses must adhere to the ethical principles of justice by fostering equality in practice and treating all patients with respect and dignity (Glasper, 2019). A huge percentage of people with disabilities experience stigmatization and are discriminated against during their quest for health care. Even though the field of nursing understands the importance of preventing discriminatory behaviours, equal treatment and opportunity for people with disabilities is still not taken seriously. The professional, moral, and legal responsibility of nursing practice is to advocate for and promote equality for people with disabilities (Glasper, 2019). The social model of disability can be used to see the world of those with disabilities. Nurses can use this model to advocate for the equality of people with disabilities. Although this model may not fully represent certain groups, it constitutes a reliable tool for improving the advocacy responsibility of nurses. According to Heck (2022), advocacy refers to getting support or help from another individual who helps you express your wishes and views and stand up for your rights. Advocacy also involves public recommendation or support for a given cause or policy. During advocacy, unique or specialized groups of clients are represented before a health commission or regulatory agency. In healthcare, a client is a patient. Sometimes, advocacy in healthcare may entail advocating through political activism for legislation and policies to financially support people with severe health risks and problems not covered under health insurance. This implies that care providers, as advocates, offer public assistance and occasionally oppose federal or state initiatives. Patient advocacy is primarily the role of nurses because they engage and interact with patients and their loved ones more frequently and establish connections that other care providers do not have with patients. This puts nurses in a position to work with patients to identify and

5 define their treatment objectives and make most healthcare decisions. Thus, nurses are in a suited position to advocate for and represent the patients. The ultimate goal of a nurse advocate is to safeguard patients’ rights, describe them, and help them discover remedies to their health problems. Political activism is another aspect of the nurse advocacy role. This brings a fresh dimension to nursing practice that comes with more control of patient care, nursing practice, and outcome, especially in the vital aspects of quality, access, and healthcare cost. Nurses can enhance their patients’ quality of care and living standards by engaging in political procedures and collaborating with community leaders. It is the nurse’s responsibility to speak out for the rights and preferences of their patients. This will enable the patients to define their goals, advance their legitimate preferences, and defend their basic rights, such as the right to privacy and independent decision-making. However, as vital as nurse advocacy is to nursing practice, its efficacy is impeded by various obstacles. According to Younas et al. (2023), the most prevalent barriers to advocacy roles include a conflict of interest between the nurse’s obligation to the employer and the patient, inadequate time, absence of authority, inadequate support, and the fear of punishment. Patients are supported by the Mental Health Act (1983) to make their decisions and consult nurse advocates in cases where they cannot make their own decisions. Independent Mental Capacity Advocates are mandated to offer support to patients who cannot make informed decisions (Morgan & Paterson, 2019). Additionally, patients can still access various sorts of advocacy apart from independent advocacy as stipulated by the law. Patient advocacy that is not covered under the patient’s legal right is referred to as community advocacy. Community advocacy can help individuals with various issues, including filing grievances, establishing benefit claims, obtaining access to care, and making housing applications. In such cases,

6 advocates do not come up with their judgments or decisions; rather, their work is to protect and represent the rights of individuals who do not have the psychological capacity to make informed decisions (Morgan & Paterson, 2019). In our narrative case, Chris was in a vulnerable situation where he could have been provided with a statutory nurse advocate as stated by the Care Act (2014), which outlines the roles of an advocate for people who cannot properly articulate and express their preferences and needs. One of the nurses who cared for Chris’ hygiene at the personal level might be considered an advocate owing to her concern regarding the needs and safety of Chris. The nurse was compassionate and considered it an honour to take care of Chris. If this one particular nurse was able to adhere to the acts and codes binding nursing practice, then all the nurses who were taking care of Chris were well informed regarding how to handle a patient with a disability. Thus, whistleblowing policies should come into play in such circumstances as this nurse could have made it her responsibility to expose the abuse and negligence that Chris was put through. Every advocacy role for patients can potentially contribute to a whistleblowing opportunity. When dealing with neglect or abuse that patients face, nurses have three basic alternatives, including making the decision to quit the healthcare organization, speaking out regarding the abuse and neglect, or keeping quiet and prioritizing the needs of the healthcare facility over the needs and interests of the patient. Yet, when a healthcare professional chooses to follow the extremely serious role of whistleblowing, there are substantial repercussions that must be considered. Augustine (2022) reported that it is a tough choice for nurses to assume the role of whistle-blowers as it is a choice that leaves healthcare professionals feeling unsupported and exposed. Additionally, Wiisak et al. (2023) indicated that whether a nurse takes the last action of becoming whistle-blowers or not, they face intimidation, anxiety, and fear.

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7 The healthcare professionals who handled Chris at the impatient healthcare facility may have adhered to the medical disability model. Under this model, disability or illness is due to a physical condition, is inherent to the patient, might reduce the quality of life of the person, and causes obvious disadvantages to the person. The medical model of disability puts focus on the medical diagnosis. Thus, nurses’ understanding of disability becomes constrained and partial. Viewing healthcare from the medical perspective, patients are only treated for a given illness or condition, which returns them to good health with less or no regard for their social preferences and needs, as was seen in the case of Chris. Contrarily, the social model of disability focuses on eliminating environmental obstacles and argues that the community is what makes people with disabilities disabled. Using this social model of disability would have enabled Chris to communicate his preferences better and needs to the nurses. In conclusion, nursing practice is guided and directed by laws, policies, and legislations that all nurses should strictly comply with. When working with people in vulnerable conditions or those who are disabled to the extent that they cannot make informed decisions, it is the responsibility of nurses to assume the role of an advocate and represent and protect the interests and rights of the patient. Unfortunately, this was not the case for Chris, who faced discrimination and stigmatization at the hands of those who were supposed to take care of him. Thus, the Disability Discrimination Act should be considered as a chance to ensure that every patient is given equal access to excellent care quality, irrespective of the disabilities they might have. Healthcare facilities should adopt and execute the Disability Discrimination Act to promote awareness regarding the needs and concerns of those with disabilities. Ultimately, the healthcare system must formulate a framework to educate and help nurses so that disabled people are treated with respect and dignity.

8 References Augustine, L. G. (2022). Whistleblowing in Healthcare for Patient Safety: An Integrative Literature Review. International Journal of Human Resource Studies, 12 (1), 1531-1531. Berghs, M., & Dyson, S. M. (2022). Intersectionality and employment in the United Kingdom: Where are all the Black disabled people?. Disability & Society, 37 (4), 543-566. Berghs, M., Atkin, K., Hatton, C., & Thomas, C. (2019). Do disabled people need a stronger social model: a social model of human rights?. Disability & Society, 34 (7-8), 1034-1039. Cole, M. (Ed.). (2022). Education, equality and human rights: issues of gender, ‘race’, sexuality, disability and social class . Taylor & Francis. Devakumar, D., Selvarajah, S., Abubakar, I., Kim, S. S., McKee, M., Sabharwal, N. S., ... & Achiume, E. T. (2022). Racism, xenophobia, discrimination, and the determination of health. The Lancet, 400 (10368), 2097-2108. Glasper, A. (2019). How Nursing and Midwifery Council quality-assures nursing associate education. British Journal of Healthcare Assistants, 13 (6), 296-299. Heck, L. O., Carrara, B. S., Mendes, I. A. C., & Arena Ventura, C. A. (2022). Nursing and advocacy in health: An integrative review. Nursing ethics, 29 (4), 1014-1034. Morgan, M., & Paterson, C. (2019). ‘It’s Mental Health, Not Mental Police’: A human rights approach to mental health triage and Section 136 of the Mental Health Act 1983. Policing: a journal of policy and practice, 13 (2), 123-133. Wiisak, J., Suhonen, R., & Leino‐Kilpi, H. (2023). Reasoning for whistleblowing in health care. Scandinavian Journal of Caring Sciences . Younas, A., Inayat, S., & Masih, S. (2023). Nurses’ perceived barriers to the delivery of person‐ centred care to complex patients: A qualitative study using theoretical domains

9 framework. Journal of Clinical Nursing, 32 (3-4), 368-381.

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