Research background

1
Research background

• Supporting carers (ref)
• Egocentric social networks (ref)
• The clan
• Friendster
• People prefer personalised health information
  (ref)
• Legal acceptability

Problem Research question Approach Results
Key contribution Questions
2
Invoking Social Support in a Health Crisis
Wendy Moncur Universities of Aberdeen
Dundee http//www.csd.abdn.ac.uk/wmoncur/
3
These babies will need extra care
12 of all babies born in the UK are admitted to
a Neonatal Intensive Care Unit (NICU) or Special
Care.
Problem Research question Approach Results
Key contribution Questions
4
These babies will need extra care
so will their parents.
Problem Research question Approach Results
Key contribution Questions
5
Friends and family can help

• Stress reduced through appropriate social
  support.
• Social support can be
• Emotional
• Instrumental
• Informational
• Distinct from professional support

Problem Research question Approach Results
Key contribution Questions
6
Benefits of Social Support

• Appropriate social support can result in
• (Cobb, 1975 Crnic et al, 1983)
• Patients going home faster eg BabyCareLink
• Earlier discharge ? reduced costs to healthcare
  provider.
• Better psychological recovery for parents of
  babies
• Beneficial effect on mother-infant interaction
  infant development.

Problem Research question Approach Results
Key contribution Questions
7
Appropriate support

• To give appropriate support
• Friends family need to know that something is
  wrong.
• Need to know what support is wanted.
• But
• May be scared to ask.
• Communication may not be the parents priority.
• Information about baby is sensitive.

Problem Research question Approach Results
Key contribution Questions
8
BabyTalk Project Adapting reports to diverse
recipients
Medical staff
Data Interpretation
Tailored reports
Clinical data about the baby
Parents supporters
Problem Research question Approach Results
Key contribution Questions
9
Research Question

• Create summaries about babies in NICU
• for the clan
• personalised, non-technical
• contain clinical and non-clinical data
• Adapted to
• What parents wish to tell
• What recipients want to know
• Result in support being given to parents

Problem Research question Approach Results
Key contribution Questions
10
Research Aims

• Save parents time in communicating news, when
  their priority is the baby
• Encourage parents social network to give
  appropriate support to the parents while the baby
  is unwell.

Problem Research question Approach Results
Key contribution Questions
11
What information to give?

• Clinical data
• Sensor data heart rate, blood pressure,
• Lab results
• Clinicians observations
• Non-clinical data
• Parents support needs

Problem Research question Approach Results
Key contribution Questions
12
Why adapt information?

• Helen has been changed from nasal CPAP to
• ventilation. She has been in oxygen between 25
  and
• 40. Helen has been given a dose of replacement
• surfactant. Following gall bladder surgery, she
  has been
• started on morphine to keep her comfortable.
• She has been started on vecuronium to keep her
  from
• moving and fighting the ventilator.
• She has been started on dopamine to help his
  blood
• pressure.

Sample medical summary report
Problem Research question Approach Results
Key contribution Questions
George has been changed from nasal CPAP to
ventilation. He has been in oxygen between 25 and
40. George has been given a dose of replacement
surfactant. He has been started on morphine to
keep him comfortable.He has been started on
vecuronium to keep him from moving and fighting
the ventilatorHe has been started on dopamine to
help his blood pressure.
George has been changed from nasal CPAP to
ventilation. He has been in oxygen between 25 and
40. George has been given a dose of replacement
surfactant. He has been started on morphine to
keep him comfortable.He has been started on
vecuronium to keep him from moving and fighting
the ventilatorHe has been started on dopamine to
help his blood pressure.
George has been changed from nasal CPAP to
ventilation. He has been in oxygen between 25 and
40. George has been given a dose of replacement
surfactant. He has been started on morphine to
keep him comfortable.He has been started on
vecuronium to keep him from moving and fighting
the ventilatorHe has been started on dopamine to
help his blood pressure.
George has been changed from nasal CPAP to
ventilation. He has been in oxygen between 25 and
40. George has been given a dose of replacement
surfactant. He has been started on morphine to
keep him comfortable.He has been started on
vecuronium to keep him from moving and fighting
the ventilatorHe has been started on dopamine to
help his blood pressure.
13
Research approach

Evaluate accuracy with clinicians
Sample data about babies
Knowledge acquisition
Prototyping
User evaluation
Problem Research question Approach Results
Key contribution Questions
14
Knowledge acquisition

• Grounded Theory
• Methods
• Focus groups
• Semi-structured interviews
• Questionnaires
• Communication diaries
• Establish
• What information parents willing to give
• What information clan members need
• to invoke social support

Problem Research question Approach Results
Key contribution Questions
15
Knowledge acquisition

• Qualitative research carried out with
• Parents who have had sick babies
• Clan members
• Ethical approval obtained to work with parents in
  NICU
• Which of data items identified by clan members
  are parents willing to give out?
• Appropriate levels of detail depending on
  closeness
• Appropriate terms to use (lexical choice)

Problem Research question Approach Results
Key contribution Questions
16
Prototyping

• Use sample data from 20 real babies
• Create parent interface
• Self-report of emotions
• Model closeness to individual supporters.
• Create supporter interface
• Supporters able to define maximum they want to
  know.
• Generate tailored report contents

Problem Research question Approach Results
Key contribution Questions
17
User evaluation of prototype

• Iterative evaluation
• Acceptability
• Do report contents match what parents want to
  tell?
• Are reports easily understood by clan members?
• Do report contents satisfy clan member
  information needs?
• Usability eg-
• Are interfaces reports easy to understand?
• Are reports effective in invoking social support?
  
• Is the social support welcome?

Problem Research question Approach Results
Key contribution Questions
18
What do parents want to tell?

• Semi-structured interviews showed that they
  tailor information to
• gravity of babys condition
• closeness of relationship with supporter
• supporters ability to cope with upsetting
  news.

Problem Research question Approach Results
Key contribution Questions
19
What do supporters want to know?

• Used focus group, interviews, questionnaires.
  Discovered that they want
• Clinical non-clinical data
• Information requirements affected by
• physical proximity
• emotional proximity
• Practical
• want to plan their support

Problem Research question Approach Results
Key contribution Questions
20
What do supporters want to know?

• Clinical data
• Very high-level summary of babys state
• Most people dont want details
• But variation in what information is wanted.

Im not too interested in the details. but if
there is something that will affect the
chances, I want to know that. Clan member
Problem Research question Approach Results
Key contribution Questions
21
What do supporters want to know?

• Non-clinical data
• Parents emotional state
• Mothers physical state
• What practical help parents need

They couldnt even drive themselves they were
just.. too shocked. Clan member
Problem Research question Approach Results
Key contribution Questions
22
Example baby Helen

• Born 8 weeks prematurely
• Weight 1550 grams
• Immature lungs
• Fed intravenously
• Gall bladder surgery went well
• Parents are Sarah Dave.

Problem Research question Approach Results
Key contribution Questions
23
Remember our earlier report

• Helen has been changed from nasal CPAP to
• ventilation. She has been in oxygen between 25
  and
• 40. Helen has been given a dose of replacement
• surfactant. Following gall bladder surgery, she
  has been
• started on morphine to keep her comfortable.
• She has been started on vecuronium to keep her
  from
• moving and fighting the ventilator.
• She has been started on dopamine to help his
  blood
• pressure.

Sample medical summary report
Problem Research question Approach Results
Key contribution Questions
George has been changed from nasal CPAP to
ventilation. He has been in oxygen between 25 and
40. George has been given a dose of replacement
surfactant. He has been started on morphine to
keep him comfortable.He has been started on
vecuronium to keep him from moving and fighting
the ventilatorHe has been started on dopamine to
help his blood pressure.
George has been changed from nasal CPAP to
ventilation. He has been in oxygen between 25 and
40. George has been given a dose of replacement
surfactant. He has been started on morphine to
keep him comfortable.He has been started on
vecuronium to keep him from moving and fighting
the ventilatorHe has been started on dopamine to
help his blood pressure.
George has been changed from nasal CPAP to
ventilation. He has been in oxygen between 25 and
40. George has been given a dose of replacement
surfactant. He has been started on morphine to
keep him comfortable.He has been started on
vecuronium to keep him from moving and fighting
the ventilatorHe has been started on dopamine to
help his blood pressure.
George has been changed from nasal CPAP to
ventilation. He has been in oxygen between 25 and
40. George has been given a dose of replacement
surfactant. He has been started on morphine to
keep him comfortable.He has been started on
vecuronium to keep him from moving and fighting
the ventilatorHe has been started on dopamine to
help his blood pressure.
24
Possible report for close friend
Dear Aaaaaa, baby Helen was born three days ago.
She was 8 weeks early, so she will need help with
her breathing for a little while. She had minor
surgery yesterday, which went well. You can
phone Sarah on xxxx-xxxx between 8pm and 9pm most
evenings for an update. Sarah Dave would
appreciate offers of help walking the dogs while
Helen is in hospital.
Problem Research question Approach Results
Key contribution Questions
25
Possible report for an elderly relative
Dear Granny, Helen was born 8 weeks early, so
she will need help with her breathing for a
little while. This is normal for a premature
baby. David will phone you to give you an
update later this week.
Problem Research question Approach Results
Key contribution Questions
26
Key contribution

• People in a health crisis benefit from
  appropriate emotional support given by members of
  their social network (Hupcey, 1998).
• This PhD study involves novel research into
  automatically calling for this support via
  peoples social network.

Problem Research question Approach Results
Key contribution Questions
27
Questions(I)

• How do you get people to self-report their
  emotional state?
• Eg PANAS, SAM, emoticons?
• Methodology
• Facultys experiences of using diaries with
  participants

Problem Research question Approach Results
Key contribution Questions
28
Question for panel (II)

• Ideal evaluation of effectiveness
• Participants real babies, their parents clan.
• Context Neonatal intensive care unit
• Task-based evaluation, measuring
• actions taken by supporters
• reduction in stress for parents
• outcomes for mother-infant bonding
• infant social interaction

Problem Research question Approach Results
Key contribution Questions
29
Question for panel (II)

• But
• Ethical constraints
• Cant use real babies, parents, clan
• Vulnerable population.
• Even with ethical approval, constrained by
  resources
• Clinician needed to validate all reports before
  issue to parents clan
• Parents and clan all need to consent
• How can I evaluate Effectiveness?
• What alternative is valid in research terms?

Problem Research question Approach Results
Key contribution Questions
30
Thank-you