YOUNG ONSET

PARKINSON’S DISEASE
Nursing the chronically ill – NUR1235

Francesca Cremona
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David, is a 34-year-old father of two young children, husband and a teacher by profession. He was
diagnosed with Young Onset Parkinson's Disease (YOPD) at the age of 32. Since David had no
visible tremor on examination by his local GP, he went undiagnosed for some time
His symptom of dystonia was not thought to be related to Parkinson's. However, when a pupil
shouted out in class that he thought David had Parkinson's disease as his writing on the blackboard
had become almost illegible, David sought out a second opinion. (The pupil’s father had
Parkinson's and he was aware that micrographia was an early symptom of Parkinson's). David also
noted over a period of time that he had difficulty lifting up his young children and hand when
playing his piano, due to weakness in his left hand.

On a daily basis he experiences typical on and off fluctuations off YOPD. He would wake up in
an off state and off dystonia. He had to get to his school on time but the dystonia was painful and
it was only when he took his medications that he could get going but then developed dyskinesia
the drugs started to work. Following diagnosis, David explained to his pupils that he had been
diagnosed with YOPD and if he needed to take medications at any point during his lessons they
should understand this.
When the effect of David’s medication wore off, he would develop chronic pain, fatigue and
irritability and when he was fully into remission he would develop dyskinesia and dystonia. To
control his symptoms he was placed on a complex medication regime. Being young with an "old
person’s condition" he would be accused of being drunk and on one occasion was reported to the
school head by a parent for being drunk when he was teaching her son.
This made it hard for his wife and young children and although he wanted to keep his diagnosis
private he felt he was unable to if he was to carry on as normal a life as possible. David arranged
a teaching day to the school for parents, pupils and fellow professionals on Parkinson's. David’s
symptoms progressed rapidly during the initial stages and he fell into a depression and sought
psychiatric support for himself and his wife. Once David was reviewed and placed on a better
medication regime he stabilized for a while. He does his utmost to remain positive but fears the
future due to the uncertainty of how the condition is going to progress.

David visits the Neurologists and Parkinson's Disease nurse clinics on a regular basis but feels
isolated as he hadn't been directed to other people with YOPD and isn't aware of the Parkinson's
associations who could help advise and educate him and his family on how to live with Parkinson's.
David sought out other Young Parkinson's groups and decided to get involved in order to
understand what he is living with. He knows he and the others are judged on how they look and
he hates the dystonia and dyskinesia which are both part of the Parkinson's but also drug induced.

The lived experience of living with a long-term condition is a journey for the person living with
the Parkinson's, the caregivers and professionals. Caring for a client with chronic illness requires
a different framework for practice that differs from that of caring for those with acute, episodic
disease that might impact the outcome of care. In order to provide holistic care in chronic illness,
we need to be aware of the individuality of the person and the different issues related to this.

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1. Identify two concepts and write a short paragraph on each in relation

to the case study.

Introduction
Young-onset Parkinson – a progressively disabling disease which is associated with psychological
symptoms that will reduce the patient’s quality of life. Some of the primary motor symptoms
include slowed movements, muscle rigidity, postural instability and resting tremor. Secondary
motor symptoms include shuffling gait and micrographia. (Jankovic, 2011). Parkinson’s Disease
(PD) is usually diagnosed in patients who are over 60; however, Young Onset Parkinson’s Disease
(YOPD) before 40 years is diagnosed in between 5 to 10% of Parkinson’s patients (Parkinson
Society, 2015). YOPD is generally associated with the age groups between 21 and 55 years. David
is likely to suffer from an onset of painful cramps, dystonia and other non-motor symptoms like
apathy, depression and anxiety (Zahodne, Marsiske, & Bowers, 2013). At the relatively young age
of 34, learning that he is suffering from a young onset of Parkinson’s will lead to a shocking and
emotional journey for David.

David will surely shocked when he learnt that he is suffering from the disease at such an early age
as apart from his illness, he still has to continue with his job routine and also take care of his
children. Upon learning of his disease David is likely to undergo a process of logical and emotional
adjustment in order to be able to face the uncertainty that the disease brings to his life (Ravenek,
2014a). As explained in the case study, David faces a struggle to choose the appropriate time to
reveal his condition to his wife, children, colleagues and his class children. Other thoughts passing
through his mind would be the likelihood of an early retirement and how he will be coping
physically, mentally, emotionally and financially. Throughout his experience with YOPD David
will experience issues like social isolation, stigma, uncertainty, powerlessness, fatigue, intimacy,
disability and psychological distress. It is believed that young Parkinson’s patients are faced with
more psychosocial challenges than older patients as they are diagnosed earlier and therefore they
live longer with the disease (Calne, Lidstone & Kumar, 2008).

1.1 Psychological effects of Parkinson’s disease

Young onset Parkinson’s Disease is associated with many psychological and behavioural issues.
After the initial shock following the medical results, David is likely to suffer from a myriad of
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thoughts on his family, married life, job, finances and social wellbeing (Schrag, & Schott, 2006).
Being diagnosed at such an early age with YOPD, will definitely cause anxiety to David and his
family. Young patients with PD are more likely to react impulsively following their diagnoses as
they engage in trying unproven therapies or else rejecting any form of medical care from their
doctors (Schrag et. al. 2003).

As soon as David is told about his disease, he is likely to go through a process of adjustment and
adaptation to manage his new state of life. After this period, he becomes accustomed to his illness
and accepts the challenge to move on with his life. The time it takes for David to pass through this
period depends on his personality and the level of support he has from his family and work
colleagues. It is believed that younger patients have more difficulties with depression, moods,
anxiety, depression, anger and addictive behaviours. These psychological issues occur with the
onset of physical function limitations. In their studies comparing young onset PD to regular
Parkinson’s Disease Schrag et. al (2003) found that YOPD patients tend to have more troubles
with regards to employment, family, marriage, sexuality, stigma and depression. This is also due
to the fact that YOPD patients are likely to live longer with their psychosocial and physical
disruptions than older patients with PD.

Anxiety, Depression and Dementia

David is likely to experience anxiety as a result of his illness which is often accompanied by
feelings of hostility and denial. The greater the extent of these feelings, the greater the patients
suffer from the negative effect of their treatment. Sleep disturbances are common in PD patients
and occur as a result of chemical changes in the brain (Schrag, & Schott, 2006).

According to Calne et. al., it is very difficult for medical professionals to distinguish depression
symptoms from PD symptoms as these tend to be very similar. Amongst the similarities there are
loss of spontaneous facial expression, dip in concentration levels, impaired cognitive-intellectual
functions, agitation and anxiety, hallucinations, constipation, sleep disturbances, apathy and
decreased libido. Apart from health concerns, PD patients with depression are more likely to
experience irritability, anxiety and sadness. It is vital for David and his family to understand that
depression symptoms cause mood disturbances. Seeking treatment options from medical

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professionals is known to have beneficial outcomes. Neurologists treating patients with PD and
depression may choose to treat depression first as this is likely to have a positive congruent
outcome on the physical symptoms. PD patients are also more likely to suffer from dementia than
others; however, those with a young onset of the disease have a lower risk. This is because
dementia is associated with older ages (Calne, Lidstone & Kumar 2008).

Addictive behaviours
A common psychological effect of Parkinson’s Disease is the dysregulation of dopamine. This
syndrome is known to be the major culprit leading to addictions on gambling, shopping and eating.
The eating disorder is known to be a side effect of the pramipexole drug and patients tend to stop
this addiction as soon as they stop taking this drug. Dopamine replacement therapy (DRT) is
prescribed as a result of dopamine imbalances and is known to reduce symptoms and increase the
lifespan of PD patients (Calne, Lidstone & Kumar 2008).

1. Uncertainty
YOPD patients are likely to be concerned on their selves as well as their family. If David is the
breadwinner of the family it is likely that his family will eventually face economic issues which
may even lead to marital strains. Even worse if David and his wife do not have enough coping
skills to deal with crises, they may engage in erratic destructive behaviours. In such scenarios
health professionals have to be equipped with more than just knowledge on PD. It is important for
David’s children to be informed of their father’s illness as this enables them to take an active role
in certain decision-making and also to act responsibly to keep the family united. David is likely to
be concerned for the future of his wife and kids and it is important for health care professionals to
give him the support and self-believe by reinforcing the positive contribution he can still make on
his family (Calne, Lidstone, & Kumar, 2008). It is good for David to seek information pertaining
to his disease as this helps him managing his disease as well as to make him feel in control of his
life. In the long-term David must manage himself in order to learn to adjust to maintain his
functioning as the disease progresses.

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Diagnoses
When David went to the doctor he obviously felt or in this case the students noticed some unusual
symptoms; however, at this point, his functionality is not severely impacted. Understandably, the
news about his disease will be very emotional for patients and will cause shock. This is a result of
identity and body function uncertainties pertaining to persons being diagnosed with YOPD. Due
to the variable onset of the disease on different patients, it is impossible for David to see how
exactly the disease in terms of symptoms, disease progression, medication side effects, will be
impacting him individually in the future. These uncertainties are likely to instill fear in David as
he becomes afraid of his and his family’s future (Webster, 2004).

Disclosure
One major aspect that is very likely to have a psychological burden on David is the disclosure of
his diagnose to his wife and children. Informing his family and children about his disease will
certainly get their understanding and support. This will also enable David to ask for assistance
with medical appointments which might be overwhelming for him to attend on his own. Before
speaking about his disease to his family David has to be personally ready and comfortable to do
this. The children’s age is also an important aspect as the younger the children the more difficult
for David to explain and for the children to understand the implications of his diagnosis. One way
of tackling this problem is to always express hope when speaking about his disease. If his children
experience anxieties, help can be sought through counsellors. Moreover, psychologists and
psychotherapists can help managing emotions experienced by David and his family. It is vital for
David not to hesitate and be concerned on social stigma if there is the need of medical professional
assistance.

Employment and Finances

David is still relatively young, and still has a long way to go to his retirement. YOPD patients are
likely to retire earlier due to their morbidities. After disclosing his disease to his family and
children, David will be in a better position to think and plan for the potential implications of his
job and finances. As described in the case study, David is experiencing the first symptoms of
Parkinson’s disease which will have an impact on his ability to work. David might also plan to
apply for and eventually start benefitting from a disability pension. It is important for David to

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ensure that he will get these benefits in advance as this gives him peace of mind (Schrag & Banks,
2006).

Thoughts about early retirement and about physical impairments deterring him from work may
evoke questions of self-worth. This together with a lack of support in his workplace may lead to
his resignation. Studies reveal that patients diagnosed with YOPD tend to retire early with almost
all patients retiring within 10 years of being diagnosed (Schrag & Banks, 2006., Murphy et. al.
2013). Having a good PD management programme and a good cooperation with his work
colleagues David may be able to delay further his retirement.

Family Role
Before being diagnosed with Parkinson’s Disease, David’s roles included that of being a father, a
husband and a teacher. One can say that his roles in terms of expectations and functions were being
fulfilled by David. As the disease progresses, David and his family’s identity is being slowly
replaced by feelings of uncertainty and helplessness. The sense that he will not be able to take care
of his children in the future will also cause stress (Webster, 2004).

David may also have problems with his wife after being diagnosed with PD. Since the future
cannot be controlled by themselves as a couple due to the disease, what was planned between them
is likely to have reached a halt or even changed completely (ibid).

Role in employment
In a way David’s role with regards to employment mimics that of his role as a husband and parent.
In the future David will not be able to work as this role was taken away from the disease. Since
society perceives that men of David’s age should be working, the loss of employment will also
lead to a loss of identity. At his tender age David is already experiencing early signs of not being
able to write properly and an early retirement is likely. Early retirement will not be a matter of
choice and this will further highlight the lack of control he will have on himself due to the disease
(Ravenek, 2014 a).

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Role in society
Ravenek (2014 a), maintains that an individual’s identity is formed by how they see themselves in
the light of society and how they think society sees them. When David learns about his disease, he
is likely to experience identity uncertainty with regards to his ability to perform his role as a
husband, parent and teacher. The visible symptoms together with the side-affects resulting from
medication are causing David to decrease his interpersonal relationships. Psychological issues like
anxiety, depression and stress may make him refuse help from his friends and relatives. As soon
as he learns about his disease, David’s identity will change to that of being a patient as he
understands that he is no longer a ‘normal’ and ‘healthy’ person. Due to social norms depicting
young adults as being healthy and productive and due to PD being associated with older age, the
sense of not being normal is even greater for David (Ravenek, 2014 a).

Loss of control
A patient with a YOPD is likely to feel that he has lost the control on his life as the diagnoses and
progression of the disease has now taken control of his life. So far David took his life to a certain
direction through his choice of education and his choice to work as a teacher. Now he is aware that
due to the disease, the control he had so far is about to change. The fact of being depended on his
family also means that their lives will change (Ravenek, 2014 a).

Other uncertainties
The uncertainty faced by David is likely to follow in accordance to the progression of his disease.
He knows that he is constantly edging closer to what he is fearing. One constant fear is of the
eventuality of himself developing dementia and difficulties with swallowing. The fact that he
knows his body is in constant decline will lead David to think that eventually he will be a burden
to his family and other relatives. Instead of his family being depended on him he will be depending
on his family. All this uncertainty will eventually become a reality as his disease progresses (ibid.).

The lives of patients with YOPD are characterised with ‘good’ and ‘bad’ days and this in itself is
another uncertainty to both David and his family. On a good day David is likely to be in control
and productive which makes him feel that the disease is not impacting his life. On the other hand,
balance problems, tremors and experiencing difficulties in doing certain activities will result in a

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bad day (ibid). David’s family is likely to manage his uncertainties by trying to extend the ‘good’
days. Due to medication, David might also experience abrupt dysfunctions which add to his
uncertainties.

2. Using the concept of holistic care, discuss the nursing care and support
David should receive so as to be able to continue to live in the
community.
Nursing for patients with movement disorders is all about giving high quality care with a patient-
centered approach. To date, there is no cure for Parkinson’s disease; however, some treatments
exist which help preventing the symptoms hence leading the patient to living a better quality of
life. Many patients tend to respond well to drug treatment; however, at the expense of side effects.
The dosage of prescribed drugs is usually given in accordance to the individual’s physical well-
being. Doctors tend to prefer the prescription of dopamine over levodopa particularly in young
patients as this is known to have less side effects. Amongst the therapies, patients are prescribed
medication and surgeries or referred to physio, speech or occupational therapists. This multi-
disciplinary way of diagnostics is part of the holistic care to ensure the wellbeing of PD patients
(McCall, 2003).
Holistic care focuses on the mind, body, spirit, emotion and environment. In its aim to improve
health care the Institute of Medicine came up with six fundamental aspects which are safety,
effectiveness, equitability, timely, efficiency and patient-centered care. It is of utmost importance
for the medical professionals taking care of David to have good communication in order for holistic
health care to be effective (Institute of Medicine, 2001).

Need of information
A common resilience strategy which is embarked on by YOPD patients and also recommended as
part of holistic care is information seeking. Being informed about their disease helps patients in
managing their uncertainties and maintain a degree of control on their lives (Ravenek, 2014).

It appears that the disease is still at an early stage, therefore, it is very important for David to be
proactive through being knowledgeable about his health and learn how to manage his disease.

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Online media is becoming increasingly important offering not only up-to-date information but also
emotional support from patients living with similar experiences. David must know that YOPD
symptoms and experiences affect individuals differently. In fact, he is likely not to experience all
the symptoms that he read about. One way to monitor the physiopathology of YOPD is for David
to write down all his experiences and reactions to medication, food intake, exercises and their
symptoms and side effects. In this manner, physicians will be in a better position to manage his
diagnoses (Ravenek, 2014).

In their studies Lambert and Loiselle (2007) make reference to Health Information Seeking (HIS)
which is often performed by patients for three main reasons: as a result of their illness, to actively
participate and take decisions on their health and for health promotion reasons. Pinder (1990)
identifies three types of information behaviours; seekers, weavers and avoiders. Seekers actively
seek information even if this is not favourable. Weavers interpret information selectively accepting
favourable information and rejecting unfavourable ones. Avoiders actively seek to avoid
information for the fear of confirming unfavourable information.

In a study on English Members of Parkinson’s Disease Society (Williams, 2005) it is revealed that
younger PD patients tend not to be satisfied with information given by doctors after being
diagnosed as they feel that this applies more to older patients. To this effect, younger patients tend
to seek information on issues like employment, disclosure to relatives and families and other self-
management strategies.

The importance of education, self-management and shared decision making

The World Health Organisation identified the need for education in order for medical professionals
to better manage the care of PD patients. One of the major issues with PD is that the disease is
variable in nature as it takes different courses in different patients. Symptoms tend to be mild at
first then becoming more acute. In the long run PD brings about motor fluctuations, dyskinesia,
gait impairments, dysarthria and hypophonia. In the latter stages, patients are likely to be
dependent on others with most of their daily activities (WHO, 2006). In his study Grosset et. al
(2005) maintain that Parkinson’s patients who were actively involved in their care tended to abide
more to the consultant’s recommendations. Having the correct knowledge about the disease

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patients will be in a stronger position to decide for themselves with the carers with regards to when
to start medication etc (Van der Eijk et. al 2011).

Holistic nursing also involves nurses encouraging patients to be more participative during their
diagnoses with regards to targets and planning of treatment as this helps patients feel more in
control of their lives. Studies reveal that if David is able to self-manage his disease, he is likely to
require less medical care interventions in hospital hence the patient leading a better quality of life.
Patient involvement is known to encourage greater communication between patients and medical
care professionals (Lorig & Holman, 2003). These health promotion initiatives are known to
reduce psychological morbidities and medication side-effects of PD (Van der Eijk et. al 2011).

Having good knowledge of their disease patients will be in a better position to take decisions on
their own health. Shared decision making involves patients having good knowledge about PD and
taking decisions about preferred treatments when two or more medications are not showing any
significant differences. Active participation in diagnosis is more popular amongst young, educated
patients. Since David has a good level of education, it is recommended that he embraces self-
management and shared decision making. Patients suffering from dementia will no longer be able
to take decisions as their cognition declines. Encouraging shared decision making makes sense
only when the patient has a certain capacity to take decisions (Van der Eijk et. al 2011).

Multidisciplinary care
A recent study by Ravenek shows that it is important for YOPD patients to seek both disease-
specific, family, friends and other Parkinson patients support which are vital for his wellbeing.
Other medical professionals that can help David include movement disorder specialists,
physiotherapists, occupational therapists and speech language therapists (Ravenek, 2014).

According to the WHO report (2006) initial therapy largely involves decision-making on the
diagnosis of the disease. Initial prescriptions might be made by the family doctor; however, it is
recommended that consultations with neurologists and other medical professional experts in the
field are made at any stage of the disease. Van der Eijk et. al (2011) maintain that patients prefer
to be treated by professionals who have direct past experience in PD. It is vital for patients to seek

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information on the disease; however, literature is not as conclusive as other diseases. To this effect,
prevention and treatment methods are still not guaranteed as being effective (ibid).

Psychological Care
As discussed in the previous section, David may experience depression, pain and other
psychological issues. This calls for a multidisciplinary approach in order to provide holistic care
to the patient. While the importance of medical care is of prime importance, one must also take
care of other issues which will aid David’s wellbeing (McCall, 2003). In their study on holistic
care, Van der Eijk et. al. (2011) reveal that Parkinson’s patients seek emotional support and
empathy immediately after being diagnosed with PD. This study also reveals that patients prefer
personalised caregiving as this is known to reduce stress and anxiety.

Social Care
Social care can be defined as a “range of interventions that help people conduct activities of daily
living and maintain independence and well-being” (Tod et. al., 2016). According to Parkinson’s
UK social care for patients with PD includes personal care, help at home, aids to stay independent
and day care homes. Interestingly, it also mentions about the need for support for carers to enable
them to take breaks from taking care of patients (Parkinson’s UK, 2018). Social care can vary
from caring for patients at home to helping them carry out their hobbies. This aspect of health care
can be performed by health organizations or even by family and friends. Although formal
interventions by nurses and health care professionals are mainly responsible for health care, they
are the ones who refer their patients to social care.

Conclusion
The management of YOPD is very complicated and involves a multidisciplinary approach. The
role of the nurse is to be supportive to meet the patient’s psychological, social and emotional needs
and to be a link between the patient and other health care professionals. Moreover, it is vital for
PD patients to have easy access to health care professionals and facilities in order for them to have
peace of mind. With all the above-mentioned nursing interventions, PD patients will be able to
integrate more in society and will be able to continue living in their community.

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References:

Brienesse, L.A., & Emerson, M.N. (2013). Effects of Resistance Training for People With
Parkinson’s Disease: A Systematic Review. Journal of the American Medical Directors
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Calne, Lidstone, & Kumar. (2008). Psychosocial issues in young-onset Parkinson's disease:
Current research and challenges. Parkinsonism and Related Disorders, 14(2), 143-150.

Goodwin, V.A., Richards, S.H., Taylor, R.S., Taylor, A.H., & Campbell, J.L. (2008). The
effectiveness of exercise interventions for people with Parkinson’s disease: A systematic
review and meta-analysis. Movement Disorders, 23(5), 631-640.

Grosset, Katherine A., & Grosset, Donald G. (2005). Patient‐perceived involvement and
satisfaction in Parkinson's disease: Effect on therapy decisions and quality of
life. Movement Disorders, 20(5), 616-619.

Institute of Medicine (2001). Crossing the Quality Chasm: A New Health System for the 21st
Century. Washington, DC: The National

Jankovic, J., & Kapadia, A. (2001). Functional decline in Parkinson disease. Archives of
Neurology,58(10), 1611-5.

Lambert, S. D., & Loiselle, C. G. (2007). Health information seeking behavior. Qualitative Health
Research, 17(8), 1006-1019.

Lorig, K., & Holman, R. (2003). Self-management education: History, definition, outcomes, and
mechanisms. Annals of Behavioral Medicine,26(1), 1-7.

McCall, B. (2003). Young-onset Parkinson's disease: a guide to care and support. Available:
https://www.nursingtimes.net/young-onset-parkinsons-disease-a-guide-to-care-and-
support/205289.article. Last accessed 13th Jun 2018.

Muangpaisan, W., Mathews, A., Hori, H., & Seidel, D. (2011). A systematic review of the
worldwide prevalence and incidence of Parkinson's disease. J Med Assoc Thai, 94(6), 749-
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Parkinson Society. (2015). Young-Onset Parkinson's Disease (YOPD). Available:

https://parkinsonsociety.ca/young-onset-parkinsons-disease/. Last accessed 14th May
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Pinder, R. (1990a). The Management of Chronic Illness: Patient and Doctor Perspectives on
Parkinson's Disease. Basingstoke, Hampshire: Macmillan Press.


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Ravenek, M,J. (2014). Young‐Onset Parkinson’s Disease: Advice for Those Newly Diagnosed
From Individuals Currently Living with YOPD. London: Canadian Institute of Health
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Schrag, A., & Schott. (2006). Epidemiological, clinical, and genetic characteristics of early-onset
parkinsonism. Lancet Neurology, 5(4), 355-363.

Schrag, A., Hovris, A., Morley, D., Quinn, N., & Jahanshahi, M. (2003). Young‐ versus older‐onset
Parkinson's disease: Impact of disease and psychosocial consequences. Movement
Disorders, 18(11), 1250-1256.

Tod, A. M., Kennedy, F., Stocks, A.-J., McDonnell, A., Ramaswamy, B., Wood, B., & Whitfield,
M. (2016). Good-quality social care for people with Parkinson’s disease: a qualitative
study. BMJ Open, 6(2), e006813. http://doi.org/10.1136/bmjopen-2014-006813

Webster, K. E. (2004). Living with the Invisible Monster: A Young Onset Parkinson's Disease
Patients Perspective on Living A New Life. Bloomington, Indiana: AuthorHouse.

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Switzerland: WHO. 140-150.

Zahodne, L., Marsiske, M., & Bowers, D. (2013). A latent class analysis of psychological
disturbance in Parkinson's disease. International Journal of Geriatric Psychiatry, 28(10),
1054-1060.

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1. A soft copy of the assignment must be uploaded to TURNITIN as a single word document.
You should name your file using the following naming convention before uploading it:
NURxxxx-First Name Surname e.g. NUR0232-John_Borg.

2. A hard copy of the assignment must be posted in Box no. 1

3. The deadline for submission of both the soft and hard copy of the assignment is from 15th
June to Midday of Friday 22ndth June, 2018.

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