INTELLECTUAL DEVELOPMENTAL DISABILITIES 1

Intellectual Developmental Disabilities

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INTELLECTUAL DEVELOPMENTAL DISABILITIES 2

Intellectual Developmental Disabilities

Nurses providing direct care to people with intellectual or mental disabilities are often obliged to

submit a review as part of their education or training in clinical practice. People with intellectual

disabilities require compassionate, high-quality palliative care that is effective and efficient

(Tuffrey-Wijne et al., 2015). End-of-life (EoL) patients necessitate compassionate and

professional care from health care practitioners, who may encounter life-threatening situations.

Due to the complexity of their disabilities, Tuffrey-Wijne et al. (2015) demonstrates that people

with intellectual disabilities are typically ostracized from primary health care services. The EoL

care practitioners continue to under-refer these persons, and they have a limited grasp of their

therapy. The medical professionals offering palliative care for people with intellectual disabilities

often lack the confidence and knowledge necessary to achieve the standard requirements for

providing the care required as opined by Heslop et al. (2014). To ensure that persons with

intellectual impairments are receiving standard services during their end-of-life care, it is

necessary to guide the staff members and ongoing professional development.

Intellectual development disabilities often times affect a person's ability to think and adapt. IQ

tests can measure intellectual functioning, and a score of 70-74 indicates a substantial limitation

in a person's capacity to think critically and creatively (American psychiatric association, 2021).

Adaptive functioning can be divided into three categories: conceptual (such as language reading

and reasoning), social (such as following rules and social cues), and practical (such as self-care,

money management, and maintaining a job) (American psychiatric association, 2021). Adam et

al. (2020) claim that intellectually disabled people face health disparities, particularly in

palliative care. One percent of the world's population has some intellectual disability,
INTELLECTUAL DEVELOPMENTAL DISABILITIES 3

characterized by a decreased capacity to understand new and complicated knowledge and a

limited ability to function independently and pick up new skills.

People with intellectual disabilities are more likely to be denied access to health care worldwide

than those without disabilities. A critical review by Adam et al. (2020) demonstrates that the

average lifespan is 25 years less than that of the wider population, on average. Limited access to

palliative care services for intellectually disabled individuals has been established to enhance

lower opioid consumption in their final days of illness. End-of-life care, as added by Adam et al.

(2020) encompasses those advocating for and understanding the requirements of the patient and

their family members, as well as those providing emotional support. An essential part of

information and communication for people with intellectual impairments is ensuring that

communication is adapted to the individual's specific requirements and preferences as opined by

Mental Health Foundation (2016). Education, communication, teamwork, and health and social

care delivery are the critical areas of concern for caregivers of people with intellectual

impairments.

Challenges On Caring for Patients with Learning Disabilities

One in every fifty Britons suffers from learning disabilities. When a person is born with learning

disabilities, they are born with a lower level of intelligence and cognitive capacity than their

peers (NHS England,2015). Life skills are more challenging for those with learning difficulties.

People who have learning difficulties have a hard time comprehending and sharing information

(NHS, 2018). Impaired IQ or impaired social functioning are two terms used by the Department

of Health (2018) to describe learning disabilities that occur before a person reaches adulthood.

People with learning disabilities may have a more challenging time mastering life skill.

Learning, communication, financial management and reading and writing can all be affected by
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various factors. As a result of illness or injury, some people are born with disabilities, while

others develop them later in life (Mental Health Foundation, 2016). Some people with moderate

learning difficulties can communicate and take care of themselves, but they have trouble learning

new skills. Among other things, some people may have problems speaking. The Mental Capacity

Act (2005) protects those who lack the mental capacity to accomplish or make their own

decisions for their treatment and care.

Adult nurses must recognize and respond to the unique needs of people with disabilities because

of the discrepancies in the treatment they face (Royal College of Nursing, 2013). Patients with

LD, compared to those without, have worse mental and physical health, according to Heslop et

al. (2014).  Women with LD have a life expectancy of about 18 years less than usual women

(NHS Digital, 2017). In his findings, Adam et al. (2020) denotes those men with learning

disabilities have a 14-year shorter life expectancy than those without LD in the United Kingdom

(NHS Digital, 2017). Nurses can go above and above to guarantee that people with learning

disabilities receive equal treatment by participating in advocacy efforts to improve the quality of

care for this particular group.

Scientific research by Heslop et al. (2014) found that people with LD in the UK were more likely

than the general population to suffer from at least one manageable long-term condition. Epilepsy,

hypertension, cardiovascular disease, osteoporosis, and dementia were among the most common

diseases among this group (Heslop et al., 2014). People with LD were more susceptible to

respiratory diseases with a high degree of predictability than the general population in the United

Kingdom. The second most likely cause of death was a cardiovascular condition. It has been

discovered that people with LD are less likely to receive palliative and pain management care

than those without LD. Because of their mental health issues, people with intellectual disabilities
INTELLECTUAL DEVELOPMENTAL DISABILITIES 5

were considered at risk for poor health treatment. Krahn and Fox (2014) highlights that 71% of

learning impairment patients who died the year before were known to have had an Annual

Health Check in the year early to death, while only about 13% did not. According to Tuffrey-

Wijne et al. (2015), DisDAT was only used to measure the pain of four persons in the study,

even though most people had trouble expressing their feelings (Disability Assessment Tool).

Additionally, the absence of participation in the screening process made it difficult. (13% of

total) Hislop and co-authors (2013). Despite their advocacy duties and responsibilities to offer

palliative or end-of-life care, nurses have a chance to enhance this scenario, but there is minimal

research on the subject.

In the words of Emerson et al. (2014), people with intellectual disabilities face significant health

inequities. End-of-life care has a lot of injustices such as (Care Quality Commission, 2016).

People with LD are more likely than the general population in the UK to die young and

needlessly (Heslop et al., 2014). As part of the palliative care team's responsibility, Northway et

al. (2018) confirms that understanding impacts assessment is essential, coupled with

communication, history-taking, and examination were difficult for doctors and nurses in Cook

and Lennox's (2000) assessment of 289 registrars in general practice. Ziviani et al. (2004) and

Murphy (2006) found that communication issues negatively affected general practitioners'

abilities to manage, inform, and diagnose their patients. Patients with intellectual disabilities

reported discontent because they were not included in the dialogue between their careers and

primary care physicians.

Patients with a learning disability (LD) face significant problems in receiving high-quality

professional palliative and end-of-life care, according to a manual issued by the National End of

Life Care Program (NEoLCP). Northway et al. (2018) observe that they may find it difficult to
INTELLECTUAL DEVELOPMENTAL DISABILITIES 6

express their thoughts and feelings. Patients must be made aware that care planning can take a

long time, and medical professionals must work "for as long as it takes" to ensure that they

understand why physicians make the decisions they do. This is according to the manual. A study

found that males with learning difficulties, on average, lived 13 years less than those without

disabilities. Those with LD died 20 years earlier than women without the condition (Heslop et

al., 2013).

There have been numerous examples of people with learning disabilities receiving subpar

social and health care. Professionals often do not use approaches for adapting services for people

with learning disabilities in their practice (Heslop et al., 2014). Given the frequency of health

inequalities among persons with LD, healthcare professionals, patients, and their families must

work together to ensure that all parties provide the best possible treatment (D'Amour et al.,

2008). To better coordinate the care of patients with learning impairments, the healthcare system

must improve its internal and external communications (Heslop et al.,2013).People with learning

disabilities face several barriers to better medical care, including a lack of staff knowledge,

frequent, effective caregiver participation, and a lack of clarity in the line of accountability.

People with LD die at a higher rate than the general population, and the healthcare system must

address the issue of avoidable deaths, such as aspiration and choking, in these individuals. The

danger of aspiration and choking can be reduced if nurses and other healthcare providers work

collaboratively. They recognize 'unconventional' ways of expressing grief (Tuffrey-Wijne et al.,

2015). Sickness and pain may arise if nurses do not use professional evaluation procedures for

patients with ID. (Cooper et al., 2014). According to research done by Li and Ng (2008), nurses

need to be aware of the signs and symptoms of emerging illnesses to provide accurate evaluation,

timely and appropriate treatment. As part of the Mencap 2018 campaign, “Treat Me Well”,
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(Patja, Molsa, and Iivanainen (2001) explains that primary learning disability education for

hospital personnel, particularly nurses, is critical. When communicating with patients with

learning difficulties, healthcare practitioners, including nurses, can use the Royal College of

Speech and Language Therapists.

The greatest way for caregivers to determine pain in a patient is through the person's

body language and gestures. Moaning and screams are also used to draw attention because it's

difficult to describe what's going on. Individualistic and normal pain behaviours, such as self-

harming, are examples of idiosyncratic and typical pain behaviour (Doody & Bailey, 2017).

Caregivers are put to the test because of this. It is also possible to have diagnostic uncontrollable

if the patient is suffering from one disease but is showing signs of another. The misconception

arises from the fact that some pain symptoms have a striking resemblance. This can lead to a

drug overdose and a worsening of the disease. Patients with intellectual disabilities may also be

disadvantaged by the lack of access to caregivers who are well-versed in their treatment. The

vast majority of patients' caregivers are members of their own families or close social circles.

Unfortunately, the majority of them lack basic skills such as patient care, effective

communication, and so on. Misunderstanding could lead to a lot of misunderstandings, and the

patient could end up paying the price (Wallace & Scheepers, 2019). Concerningly, there is a

dearth of awareness in the general population about the right treatment of intellectually disabled

people. Patients suffer more and more unnecessarily as a result of it, despite the fact that it is

considered a minor concern. Deaths among people with intellectual disabilities have risen as a

result of this.

A lack of communication may prevent people from noticing or receiving adequate treatment for

pain and disease, according to McGuire et al. (2010). However, just because someone has
INTELLECTUAL DEVELOPMENTAL DISABILITIES 8

difficulty understanding and expressing pain because of a learning disability or an autism

spectrum disease doesn't mean they are not feeling it. They cannot tell whether they

are uncomfortable since they lack sensory perception (Rothschild et al., 2019). People with

learning disabilities or autism spectrum disorders may have difficulty understanding pain

assessment methods based on abstract ideas. The way people react to pain may be influenced by

their physiological and behavioral responses (Foley & McCutcheon, 2004). Many nurses

struggle to understand whether tears or laughter should be allowed when a patient has an

extensive or severe disability. The research team designed a proactive technique to help nurses

better understand how a patient responds to distress and pain. When used in a medical setting,

this technique creates a personalized representation of pain. End-of-life and palliative care must

be delivered using evidence-based practice (EBP). Few researchers and attention have been paid

to the palliative needs of patients with learning disabilities, according to Tuffrey-Wijne et al.

(2015). According to the Care Quality Commission, people with ID face disparities at the end of

life since providers' requirements are not usually fully recognized.

The medication aspect is the biggest problem these patients face when it comes to pain

treatment. Several aspects must be taken into account when administering medication to these

patients. These people are more vulnerable to the adverse effects of the medications they are

taking. These medications have side effects that damage the body's internal organs and slowly

kill the user (Barney & Chantel, et al, 2020). Another issue is how to implement preventative

measures (Barney & Chantel, et al, 2020). One of the most effective ways to manage pain is by

preventing it from occurring in the first place. However, the method has been underutilised in the

treatment of patients with IDD. Adolescents and young adults who engage in self-injurious

behaviour should be educated on how their actions mirror the pain they are experiencing, which
INTELLECTUAL DEVELOPMENTAL DISABILITIES 9

only serves to exacerbate it. This will help children realise how important it is to find a safe place

to express their feelings.

Nurses have a wide range of responsibilities, from providing patient care to assisting in

operations. When it comes to nursing, end-of-life care is one of the most important aspects.

Palliative care, on the other hand, poses numerous difficulties for everyone involved, including

the patients and their loved ones. Nurses' roles and responsibilities expand as more patients'

psychological, social, and physical well-being are taken into account (Alvarnas et al., 2015). By

underreporting pain, sensitivity to medicines supplied and immobility, end-of-life patients'

difficulties in receiving treatment are worsened. As a result, pressure ulcers are a common side

effect of these disorders. When it comes to pressure ulcers, nurses should do everything they can

to avoid or cure them if they do occur. Facilities and governments have been negotiating and

coming to an agreement on how to best provide care for the end of life. Due to the prevalence of

both avoidable and inevitable pressure ulcers in the patients they care for, nurses face difficulties

in dispersing their duty of care. Patients in the final stages of life-threatening illnesses including

cancer, heart disease, and Alzheimer's disease are the ones that bear the brunt of the situation

(Carlsson & Gunningberg, 2017). Insufficient training of nurses, infrequent turning schedules,

incontinence, which exposes patients to moisture and friction while turning, and other conditions

in the facility may all contribute to the development of ulcers. As the ulcers worsen the patient's

condition, they could lead to the patient's mortality in the long run.

When a person's life is cut short by a terminal illness, it is certain that death will follow

shortly after. Long-term care (LTC) is required to alleviate a patient's struggle with the amount

of time left to live or with the fact that they are still breathing. Providing long-term care for

terminally ill patients involves a multi-disciplinary approach to improve their health and overall
INTELLECTUAL DEVELOPMENTAL DISABILITIES 10

quality of life. As a result of this phenomena, differing perspectives exist on the processes to be

followed in order to provide palliative care that is appropriate. These perspectives cover a wide

range of topics including religion, personal views, legal considerations, professional ethics, and

social affiliations.

Conclusion and Recommendations

Despite an increase in the average lifespan of people with intellectual disabilities, these patients

are underserved in palliative care services. Individuals with intellectual impairments are at a

critical juncture for palliative care, and they need more significant support. Because they cannot

advocate for themselves, and because caregivers and family members do not appropriately

respect their autonomy, they are subjected to health disparities. When analyzing pain and quality

of life, it is essential to remember that people with intellectual disabilities may not communicate

in the same way as others. An assessment can be completed in various methods, but each

assessment must be adapted to the student's specific needs. If a person cannot communicate

verbally, they should be taught how to detect pain and suffer through nonverbal cues. Individuals

and families should evaluate programs and services in the palliative stage of life and guarantee

that people with intellectual disabilities receive the same level of care as those without

intellectual disabilities. Even if more studies are being carried out, they must include people with

intellectual disabilities themselves, not only their loved ones or caretakers.

There is evidence that educating nurses to work with people with learning difficulties is

beneficial. However, the regularity with which nurses are taught and reminded of these abilities

must be considered. The use of audio-visual aids and several treatments, including education,

teaching or promoting behavioral change, reminders, and demonstrations, are also necessary.

Nursing students, nurses, and healthcare workers who interact with patients directly benefit from
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the influence of practice educators as leaders in clinical settings. When it comes to caring for

persons with learning disabilities, those in positions of authority must make a strong case for the

6cs framework.
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