Belle is f5years old. Her mum had taken her to the GP repeatedly over the past six months. Initially Belle had a lingering ear infection, even after antibiotics. Mum then reported Belle being ‘off form’, with a poor appetite. She subsequently required further antibiotics for a sore throat. Mum felt the GP saw her as a paranoid mother. A few weeks later Belle experienced a nose bleed which settled spontaneously. Dad then noticed bruises on Belle’s leg, but she explained she fell at school. Then Belle fell off her bike, complained of a painful wrist and her nose bled heavily again. Mum took Belle to the emergency department but felt under suspicion when the doctor, then the nurse, asked about the bruising. During a detailed history it was noted she was pale. Belle had her wrist x-rayed. A FBC was taken; her haemoglobin was low (anaemia), platelets were low (thrombocytopenia) and white cells raised. She was admitted to the children’s ward and acute lymphoblastic leukaemia (ALL) was subsequently diagnosed. Mum and dad were in shock but felt angry that the diagnosis was delayed and that they were not listened to.

• Using knowledge of the physiology of blood, explain each of Belle’s symptoms

Answer : Suggested explanation:

Proliferation of white cells means there are many white cells but they are not functioning correctly. Since the white cell fights infection, this is why Belle has had recurrent infections. The white cells crowd the bone marrow compromising the other cellular components and their ability to function. Because of reduced red cells Belle has presented with anaemia and associated symptoms, tiredness, off form and lethargy. Platelet functioning is also compromised and since platelets control clotting this explains why Belle suffered from lengthy bleeds. The low platelet count results in bruising which Belle had over her lower body.

• As well as FBC what other investigations would Belle likely have carried out?

Answer: Suggested response:

Bone marrow aspirate, lumbar puncture, chest X-ray

• What might parental feelings be following the diagnosis?

Answer: Suggested response:

A plethora of emotions can be experienced by parents. These are a few of them – fear about death, anxiety, uncertainty, guilt (possibly about delayed diagnosis and about not being with sibling), worry, anger (for example with the GP), isolation. Some parents can experience relief that they have finally been listened to and got a diagnosis. The film clips on the web resources may raise further feelings.

What social roles can become secondary when caring for their child with cancer becomes parents’ master status?

Answer:

• Their professional or work role
• Role as a wife/husband
• Parent to other healthy children.

Chart the type of support needed to address each specific issue below.

• Mother becomes distressed during her child’s first chemotherapy
• A sibling is asking questions about cancer; the parent is uncertain about what to say
• Parents do not feel ready to learn how to flush their child’s central line
• A young person feels isolated during his treatment
• Parents express concerns about the financial implications of losing a salary and having to travel as a result of their child’s cancer treatment

Answer:

• Informational – provision of advice, suggestions and information that a person can use to address problems
• Instrumental – involving the provision of tangible assistance and services that directly assist the person in need
• Emotional – involving the provision of empathy, love, trust and caring

Suggested responses

Whilst it is important to remember combinations of support are required, the dominant one has been indicated below.

Woodgate and Yanofsky (2010) uniquely examined parent perspectives (n=31) through qualitative interviews about decision-making and clinical trials when their child was diagnosed with cancer. Content analysis highlighted participation in decisions about clinical trials as a difficult and extraordinary experience that included six themes:

1. living a surreal event
2. wanting the best for my child
3. helping future families of children with cancer
4. coming to terms with my decision
5. making one decision among many
6. experiencing a sense of trust.

In light of the findings in Woodgate and Yanofsky’s (2010) study, how might parents’ needs be addressed?

You may find it useful to read about the role of the clinical trials nurse on the following website: www.cclg.org.uk/write/MediaUploads/Publications/PDFs/A_guide_to_clinical_trials_(Apr_14).pdf

Answer: Suggested responses

Clear information is vital to ensure that the parents/carers and the child (if age appropriate) are fully aware of all options in order to make informed decisions.

Specialist clinical trials nurses play an important role in giving information and supporting parents within the decision-making process.

Follow this link to the Health and Safety Executive website to read about the safe use of cytotoxic drugs: www.hse.gov.uk/healthservices/safe-use-cytotoxic-drugs.htm

• How would you, as a children’s nurse, ensure safety was maintained in relation to handling of cytotoxic drugs and waste?

Answer: Role of nurse in safe handling of cytotoxic waste/spillage:

1. Being aware of potential risks, what procedures a student nurse can/may be involved with
2. Awareness of the relevant guidelines to be followed
3. Wearing of non-absorbent gloves and apron when dealing with body waste, chemotherapy drugs and contaminated equipment
4. Any equipment potentially contaminated to be disposed of in labelled bag or container and incinerated
5. Spillage kit and eye wash equipment available
6. Risk assessment for pregnant staff
7. Parents/carers aware of relevant risks to themselves

Belle has undergone her first block of chemotherapy and is being discharged home. Her parents are both very anxious about her medications and central line and fearful about her risk of infection.

• What is the role of the nurse in discharge preparation?
• What are their likely needs for instrumental, informational and emotional support?

Answer: Suggested response:

1. Early planning
2. Outreach Nurse link between hospital and community (Outreach nurse will provide service to families at home (instrumental), providing informational and emotional support)
3. Ensure all professionals aware (GP, HV, CCN)
4. Clear explanations to Belle and parents (age appropriate) (emotional and informational support)
5. Ensuring all supplies go with the child home (medications/central line supplies)
6. Education of parents about infection control and other health promotion opportunities (informational)
7. Communication with other members of the team, e.g. letter for GP, POONS
8. Information about follow-up appointment and contact (details informational and emotional)
9. This resource gives lots of information which is a back up to the information given verbally (informational):

https://d.docs.live.net/7325e06745e1bf41/Documents/Price%20%5e0%20McAlinden/Answers%20to%20activities%20and%20scenarios%20from%20chapter.docx

• Who might be the members of the team involved in Belle’s care?

Answer:

Biochemistry and haematology laboratory staff

Blood transfusion lab staff

Dentist

Dietician

Doctors, junior to consultant

Histology laboratory staff

Nurses, ward and day unit

Outreach nurse

Pharmacist

Physiotherapy

Play specialist

Radiographer

Research nurse if involved in clinical trial/s

Social worker