Week 8- children & young people with life limiting illness Flashcards
Illness narratives highlight the way in which chronic illness impact upon …… (5)
ADLs
Social relationships
Identity (view other hold of them)
Sense of self
How people make sense of their illness
Obtaining a diagnosis
How easily obtained?
What can it affect?
The pre-diagnosis period is of enormous signficance, why?
What factors (2) affect the promptness of obtaining a dx?
- Can be challenging for children, parents and clinicians. Lengthy time to diagnosis for some children: recognised need to reduce lag time
- Can affect reactions to diagnosis and trust in doctors
- Pre-diagnosis is period of enormous significance:
- transition from ‘normal’ child/family to child/family in ‘crisis’
- changes in social identify (Dixon-Woods, 2005; Clarke R et al 2014)
- Disease & non-disease related factors need to be understood (in relation to obtaining a prompt dx)
Experiences of parents in obtaining a dx
What does early dx/ refereal depends on?
What does the consulting behaviour depend on?
How do parents know their children may be sick? (2)
- Early diagnosis and prompt referral depends on
- children and a parents recognising symptoms as ‘not right’ and presenting with symptoms
- doctors recognising symptoms as being suggestive of something serious
- Consulting behaviour depends on way in which disease presents and way symptoms are interpreted by parents and children
- First suspect something wrong because of range of medical signs/symptoms and/or feelings that child ‘not right’ (crankiness, tiredness, quiet, change in behaviour)
Initiating consultations
a) Symptoms w/ possible innocent explanation
b) Unusual or frightening symptoms/ events
Give examples of illness
How this affects the time it takes the parent to take child to see HCP
a) Symptoms w/ possible innocent explanation
- It’s a virus’, ‘growing pains’, ‘wants to get out of school’
- Adopt wait and see approach: temporalising of symptomology
- Consult if symptoms persist or if feeling that child ‘not right’ doesn’t go away
b) Unusual or frightening symptoms/ events
- Fits, fainting, blood in urine, felt lump in tummy
- Tend to interpret these as needing prompt attention
- Seek attention promptly
Prompt & delayed referrals
a) What happens with symptoms are highly suggestive
b) Symptoms are vague
Consider how parents/ child may feel and what the Dr may do
What are the 2 main reasons for delays in dx from the Drs end?
- Temporalising strategies
-
Discrediting stratergies
- eg: ‘It’s a case of … the seemingly sensible Mum versus the Mum who is, may be you should or shouldn’t stereotype, just being particularly anxious’
Delayed investigations and referals:
How are they viewed?
What ‘emotions’ does this cause?
What do parents usually do if they can’t get a diagnosis?
Avoidable delays in diagnosis
- Childhood cancer - half of parents felt there had been avoidable delay
- Cystic fibrosis - mean delay in diagnosis after first symptoms was 2.1 years
‘Delays’ distressing – ‘knew something was wrong’, ‘could have treated child differently – adjusted things for him’
Parental persistence and advocacy often required: returning repeatedly, seeing different GPs, using private health care, visiting Emergency Department
Diagnosis disclosure
What is the ‘feeling’ when a delayed or disputed diagnosis is confirmed?
What is the ‘feeling’ when the child is dx with cancer?
What happens with young children and their diagnosis?
Delayed or disputed diagnosis:
- Some felt vindicated or relieved having diagnosis
- Others reported guilt and self-reproach
Cancer: parents new something was wrong but shocked and stunned at diagnosis
Young children - parents may not disclose full diagnosis but evidence that may be aware they have cancer even if not disclosed
What are children’s experiences of cancer linked to?
What are the key features of children’s accounts?
How does the media portray children with cancer?
Expereinces linked to clinical management and social context of children’s lives
Key features of children’s accounts:
- Distressing symptoms
- Disruption: identify and relationships
- Uncertainty and fear
- Strategic management
Media portrayal- heroic, brave etc..
What types of symptoms do children with cancer report?
What is the most distressing symptom? And what causes this?
- Commonly reported troublesome symptoms: pain, infection, itchiness, lack of energy. nausea and vomiting, mouth problems, insomnia, worrying, irritability, hair loss, altered appearance (Dixon-Woods et al, 2005)
- Pain most distressing symptom
- For some children pain is persistent and can be related to procedures and cancer
What are the biographic distruptions that chilren with cancer experience?
1/ Identity (4)
2/
3/
- Threats to identity:
- Changes to appearance (hair loss, effects of steroids, scarring, Hickman lines etc., portable ventilator)
- Perceived to be different or treated differently by others
- Forms of care associated with infancy: bathing, help with toilet and feeding
- Difficulty maintaining a socially acceptable identify among peers: exclusion by healthy friends, friends don’t know how to behaviour around them, ‘feel a bit of an outcast
- Changes to roles and relationships
- Plans need to be re-evaluated and changed
What are some of the stratergies children with cancer and CF use?
Evidence of normalisation:
- Keep pre-illness lifestyle
- Illness life as new life = re-designation
Gain control:
•Older children- more strategies available eg- risk taking
