Children with life limiting illness

Question 1

What is an illness narrative?

What areas of a patient’s life is included in an illness narrative?

Answer 1

Illness narrative explores how well or how badly HCP’s, care givers and patients respond to their illness.

Illness narratives highlight how chronic illness impacts on a number of key areas of a patient’s life:

• Daily living activities
• Social relationships
• Identity - how thers view them
• Sense of self - how they view themselves
• How the patient makes sense of their illness

Question 2

What period of time may be particularly significant when dealing with illness?

Answer 2

Prediagnosis is a period of enormous significance – > transition from “normal” child to an unwell child, family in crisis, changes in social identity.

Question 3

What does early diagnosis and prompt referall depend on?

Answer 3

• Children and parents recognising their symptoms as “not right”, and presenting with symptoms
• Doctors recognising symptoms as being suggestive of something serious

Question 4

How might initial signs/ symptoms experienced by a patient affect the decision to consult a doctor?

Answer 4

Less likely to consult –> with symptoms that have possible innocent explanations e.g. viral illness, growing pains, wanting to get out of school. Often adopt watch and wait approach and only consult if sx persist

More likely to consult –> unusual/ frightening symptoms or events e.g. Fits/ faints/ blood in urine/ abdominal lump –> pts seek attention promptly

Question 5

What leads to prompt vs delated referrals?

Answer 5

1) If symptoms are highly suggestive –> prompts investigations, often non disputed and parents are satisfied
2) If symptoms are vague –> delayed investigation, which may be disputed by parents, parental and child distress.

Question 6

What methods might a parent employ to obtain a diagnosis in their child?

Answer 6

• parental persistence –> returning repeatedly
• Consulting different GP’s
• Using private healthcare
• ED visits

Question 7

What is the role of the doctor in delayed diagnosis?

Answer 7

1. Temporalising strategies –> place a time limit on signs/ symptoms before taking action or making a referral
2. Discrediting strategies –> seeing the parent as lacking credibility

Question 8

what can affect the reaction to hearing a diagnosis?

Answer 8

The reaction to the disclosure of a diagnosis is often affected by the experiences of obtaining a diagnosis

Question 9

What is the role of the parent in delayed diagnosis?

Answer 9

Parents temporalising symptoms –> if it doesn’t get better by X week then we’ll attend GP…

Lack of persistance or advocacy by parents

Question 10

What are some of the distressing symptoms experienced by children with cancer?

Answer 10

Pain - most distressing symptom

Common other sx: infections, itchiness, lack of energy, N&V, mouth problems, insomnia, anxiety, irritability, hair loss and altered appearance

Question 11

In what ways may the process of cancer treatment lead to a child feeling their identity is threatened?

Answer 11

• Change to appearance - e.g. hair loss
• Treated or percieved differently by others
• Forms of care associated with infancy e.g. bathing, toileting and feeding
• difficulty maintaining a socially acceptable identity among peers –> exclusion by healthy friends, that do not know how to behave around them
• Changes to roles and relationships

Question 12

What are some of the coping strategies used by children with a cancer diagnosis?

Answer 12

1. Normalisation –> keep preillness lifestyle, and re-designation of illness life as “new normal” life
2. Trying to gain control –> often strategies less available to children than adults, as children often less able to resist things they don’t want. Older children –> may turn to risk taking