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ASSIGNMENT :
To practice paediatric palliative care we need to have an understanding of normal cognitive and psycho-social development of children so as to provide developmentally appropriate care that is tailored to meet the unique needs of the individual child.
QUESTION 1. NEONATAL PALLIATIVE CARE:
Aamir (aged 45yrs) and Sameen (aged 40 years) are expecting their fourth child. Their 3 other children who are all healthy are Mohammed (M) aged 18 years, Fatimah (F) aged 12 years and Aishah (F) aged 6 years. This was not a planned pregnancy as Sameen had an intra-uterine contraceptive device in situ at the time of conception. The diagnosis of pregnancy was only made late (middle trimester) and subsequent fetal growth was poor. Given her age and the suspected growth retardation, Sameen was referred to a fetal medicine unit for a detailed anatomy scan. The scan revealed the classical features of Potter’s sequence: small kidneys, oligohydramnios (decreased
amniotic fluid), small chest cavity and squashed facial features. Given the likelihood of a poor outcome the couple was offered a termination of pregnancy which they declined based on their religious beliefs (Muslim). They decided she would carry to as far as the pregnancy would allow, and take things as they came. They were strong in their belief that it is only Allah who decides whether their child would live or die. Their oldest son has not taken on the family religious beliefs and is going through a rebellious stage. He is embarrassed that his parents are having another baby at their age.
The two girls however were excited at the prospect of having another sibling.
The couple/family are referred to your palliative care team for support.
2 Describe how you would assist the couple as per their request to break the bad news to their 3 children of the baby’s condition taking in to account the children’s ages and attitudes towards the pregnancy.
2.2. How would you assist the couple/family with memory work and describe Muslim burial practices.
2.3 List the issues/feelings that could arise in each member of the family during the bereavement stage and describe how you would assist with providing support to this family after the death of the child. Demonstrate in your discussion your understanding of the development of children’s understanding of death.
QUESTION :
1. Briefly describe the physical, emotional (psychological) and spiritual development that occurs during normal adolescence.
2. Describe in what way living with a life-threatening or life-limiting illness could make adolescence difficult and how paediatric palliative care programmes should adapt their practices to be more adolescent friendly.
3. How best can we transition children with chronic illnesses in to adult services at or before the age of 18 years (depending on the age cut-offs for different settings)?
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