Being ill in hospital: childrens perspectives

1
Being ill in hospital childrens perspectives
Dr. Penny Curtis, School of Nursing and
Midwifery Professor Allison James, Dept. of
Sociological Studies Dr. Jo Birch Centre for the
Study of Childhood and Youth University of
Sheffield
2
Overview

• What is it like being an ill child in hospital?
• Experiences that children bring with them
• Recollection of previous experiences of hospital
  spaces
• Children do not generally find hospitals scary
• When are hospitals scary?
• The impact of medical condition and clinical
  procedures
• What do children do and how do they use hospital
  spaces when they are ill?

3
What is it like being a sick child in hospital?

• Previous experience of hospital
• I've been in for random, like my teeth and
  things 14f
• appendix out and admissions for infections 13m
• to remove play-doh from my ear 5m
• Some children have substantial experience of a
  protracted period of time e.g. cystic fibrosis /
  sickle cell / diabetes etc

4
How do children remember hospital spaces?

• Improving the built environment in which
  healthcare is delivered by innovative planning
  and design in one of the central tenets of the
  new philosophy. (Improving the Patient Experience
  Friendly Healthcare Environments for Children
  and Young People p.9)

5
How do children remember hospital spaces?

• Many children had few, indistinct memories of
  hospital spaces. When asked about their previous
  experiences, the commonest responses were cant
  remember or dont know.
• I think I came because of my twitching. I cant
  remember anything else. 7f
• 6m had visited the eye dept of the local adult
  hospital. He couldnt remember anything about
  this. Mum prompted They put that stuff in your
  eye I remember when that lady put it in my eye
  but I dont, nothing else
• 12f had been to hospital before for dental
  extractions I cant remember much

6

• Int Can you remember anything about (hospital)
• 9m Having my tonsils out
• Int Right, yeah
• 9m When I were first born
• Int So, when you were first born, do you
  remember any of that or do you remember like
  being told you had it?
• 9m No, I just remember because, normally used to
  look at my scan Ive still got the scan
• Int Oh so youve got a scan left from it, so
  were you like a baby?
• 9m Yeah

7
What do children who are experienced in the
hospital recollect?

• 8m CF remembered previous admission because it
  was his birthday boring having to sit in cubicle
  for a long time previous ward was good
  recalls bed numbering and view of a crane
  remembers café in another hospital with nice food
  and a good play room.
• 15m CF old numbers of wards friendships with
  other children who he wasnt really meant to
  talk to wheelchair racing senior medical staff
  that he liked.
• 8f Asthma sleeping in ward with other children
  noisy Cant remember where shes been in
  hospital playroom, books and stuff,
  playstations in another hospital (doesnt
  remember the operation she had there).

8
Hospitals are not generally scary places for
children
9
Clinical experiences that tend to be experienced
positively

• X-ray
• Scans
• Others Action lab, plaster room

10
X-ray

• 15f Its a bit like this and they like take
  photos of you, whats wrong with you and that
  She liked it because it really shows everything,
  that they're doing
• 10f Its where they see whats the matter .. You
  lie down and they sorted me out there
• 6f When I went to X-ray I had to take all my
  clothes off and on the picture there was a teeny
  bit of air you could see. The air was white! It
  is supposed to be white

11
Scans

• 14f The scan place, its like big gear round
  your head it were a bit weird, because of like,
  it were like right tight, so sort of like
  claustrophobic but it was alright they had like
  a radio on it, playing in my ears as well
  Headphones, big headphones, because it was that
  noisy, they had radio on

• 9f I can't remember some of it but its nice you
  lie down, it goes slowly, slowly goes in (and she
  watched a video).. Well its on the side of you..
  You just turn your head.. I think it was Tom and
  Jerry
• 16m - it was like pregnant women have and they
  named everything that was in there that was
  quite good

12
Other procedures

• 11f the Action lab, its got like a treadmill, I
  dont, I cant remember what you do with the
  treadmill well you obviously go on it and then
  you does some tests with it.. You do some
  breathing constantly to see the scale you try
  and blow some like bubble gum and blow candles
  out and these things to make it more fun and it
  comes up on a scale when you print it out.
  Theyre quite fun.
• Plaster room 9f liked because you could choose
  one which you could have

13
Understanding spaces

• Children who have experienced hospital spaces
  understand those spaces in terms of the clinical
  procedures that they perceive to happen in them.
• 11m I think thats the room where I put the pot,
  they put the pots on and take the pots off
• 6m treatment room is where they do like tests,
  tests, see things, makes you better
• 5f People can make you better in that room
• 12m the treatment room is where there are like
  needles and big operations.. He had been in
  similar room when I stabbed meself on the
  corner of step, Id been in one of them

14
When are hospitals scary places?

• Experience - painful experiences
• 11f I got whacked in, I got a massive golf club
  whacked in my eye
• 9f dislocated her finger and they put my finger
  in plaster
• 8m had been to hospital 2 years ago I hurt my
  head. I had a friend's tooth in my head. He
  broke his tooth and I hurt my head. It was cut
  open when we banged together. I cant remember
  about the hospital.
• 13m remembered X-ray when I broke my arm and I
  gashed my legasked what he remembered about the
  parts of the hospital he had visited .. It was
  alright, clean. It looked clean. The people were
  friendly

Even children who recall painful experiences may
have few memories of the hospital in which they
were treated.
15
Traumatic events diagnosis and initial treatment

• 16m I was in the room for about half an hour,
  just in pain then finally they gave me some
  morphine to sort it out
• 15m had a really bad stomach ache bad chest
  pain and I were rushed to emergency, it were
  about, it were about midnight, quite late at
  night and they did, there were ultrasound on my
  stomach and that .. several months later when
  his stomach pain got really bad I stayed in
  hospital for a week in which I had, had a camera
  down my throat to find out what it were and it
  were diagnosed more or less straight away
• 15m CF recalled a visit to another hospital for
  choking incident with mucous. He could not
  recall the CF unit I didnt pay any attention, I
  was trying to breathe
• 5m I had the tube up my nose I was
  screaming (Int Did it hurt a lot?) Yeah I
  was in pain

16
and the scariest experiences?

• Overwhelming concern for the experience of
  cannulation and needles
• 6f When I have a blood test, I have to scream..
  Because it hurts Proper doctors and proper
  nurses dont have to give you blood tests.
• 9f The only one thing I hate.. The treatment
  room with the flipping needles, oh no! Just
  dont, I just dont, I like to fight the nurses
• 12m had blood tests when he was 5 which he
  clearly recalls I was madly, got chased by a
  security guard.. Got chased by a security guard
  pinned down by security (Mum On the floor didnt
  we?) because he was scared of needles. It was
  scary.
• 14f Im really scared of needles

17
Understanding spaces the dreaded treatment room

• 10f Thats where they took blood out of me. Im
  terrified of needles and stuff
• 14m where they take blood samples and that the
  room was not right good because as soon as they
  open that tray theres about six hundred needles
  on it and syringes and bits and bobs ..
  especially when you've had loads stuck in
• 14f just so much happens in there, like things
  that arent nice like injections and things
• 14m that looks like where you get treated, so I
  dont like any of them stabbing you with needles

18
The most disliked clinical spaces
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Other experiences

• Older children often have a broader range of
  experiences, including virtual experiences, which
  can lead to anticipatory fears
• 14f recalled a number of visits to a hospital
  ward 2 years previously (before dental
  extractions) for counselling because I was
  scared of the general anaesthetic, like needle or
  gas
• 14m Would sooner not know what it is like in
  theatre where he expected youd see peoples
  insides and all knives and all that I saw it on
  TV Casualty
• 15f (admitted for appendectomy) Im just scared
  just scared about it hurting me waking up or
  something like that

20
What do children do and how do they use hospital
spaces when they are ill?

• Experience of spaces within hospitals can be
  influenced by medical condition in terms of
• Which spaces children encounter
• Which ward you go to depends what youre in for
  15f
• Snoozelums theres a lot of patients who've got
  .. brain problems 16f
• Their ability to move around
• Feeling unwell
• Restrictions imposed by treatment
• Being confined to bed
• Embarrassment associated with medical condition
• Being infectious/ vulnerable to infection

21
Cubicles, infection and degrees of illness

• In Sheffield and Derby, children voiced specific
  understandings about the use of cubicles.
  Cubicles are for children who are
• most ill
• Infectious /vulnerable to infection

22
cubicles are for those who are most ill

• 11m cubicles are for people that like are in
  like cant get out their bed because they've just
  had an operation and theyre quite serious
• 9m They like put cubicles, where people are
  actually proper, proper poorly like, proper
  proper bad and have them at front like they
  already are, and all cubicles next to it so keep
  an eye on them people. Bang in front of the
  nurses, nurses station.
• Coming out of a cubicle can therefore suggest
  that a childs medical condition is improving
• 10m I dont really need to be in that room much
  more because theyve done all the tests and they
  can use for others that more necessary

23
cubicles are for those who are infectious or
vulnerable to infection

• 11f they were testing me for TB so I couldnt
  really be in with anyone else
• 12m (meningitis) was not allowed out of her
  cubicle All I know is these 4 walls
• 9m (breathing problem) didnt want to be near
  other children because theyre all got cold
  havent they.
• 12m CF I'm right easy I right easy catch stuff,
  they put me in my own room .. just keep away
  from them so I dont catch owt else, they dont
  spread nowt

24
Medical condition can therefore influence social
interactions as well as experience of space

• 14f (eye problem) was not allowed to visit a
  friend who was also in hospital Im not allowed
  to, theyve said that.. Because hes got a bug
  and if I get it And Ive got a bug and he gets
  it
• 15m CF Ive been in for 2 weeks and Ive only
  sort of spoken to (female child) a few times
• 15m CF making friends with others in the ward
  its very difficult because you dont know what
  anybodys got

25
Overview

• What is it like being an ill child in hospital?
• Experiences that children bring with them
• Recollection of previous experiences of hospital
  spaces
• Children do not generally find hospitals scary
• When are hospitals scary?
• The impact of medical condition and clinical
  procedures
• What do children do and how do they use hospital
  spaces when they are ill?

26
What do children do when they are ill?

• Children both reflect and confirm wider cultural
  notions that children need to be kept occupied
• If youre just sat here you like get bored 15m
• Children like a variety of entertainment options
  to be available and independently accessible.
• Preferred activities vary by age

27
Preferred activities

• Younger children
• Art (drawing / colouring etc) especially under
  10s but craft activities also liked by some older
  girls
• Toys and games
• TV

• Older children
• TV and DVDs
• Computers (especially with access to www) games
  consoles
• Music
• Reading

28
Children also go to school.

• The primary aim of educating children and young
  people who have medical needs it to minimise, as
  far as possible, the disruption to normal
  schooling by continuing education as normally as
  the incapacity allows. (p.4)
• Hospital schools are under no legal obligation to
  offer the National Curriculum
• Access to Education for children and young people
  with Medical needs. (DfES 0732/2001 DoH HSC
  2001/019 LAC (2001) 27)

29
Hospital education

• Practices vary in the 3 sites
• Some children liked school work as an
  alternative form of entertainment
• Youve got youve got your own school teacher,
  you've got your own school hospital teacher you
  get to do fun school work (9m)
• And teachers come round and give you work and
  thats sort of .. I dont like it but Id rather
  be doing that than just sat here. Because if
  youre just sat here you like get bored (15m)

30
But children do not always feel well enough..

• Int What do you like best about where we are
  right now?
• 10f Its not loud so you can get to sleep
• Int Can you tell me why?
• 10f Cos it you are poorly and you have got a
  headache

31
Childrens concern for rest and sleep

• Common concern for rest/sleep across all sites
  and all age groups
• Children find disruption of sleep a major problem
  biggest single problem babies crying
• Wailing sounds of other children wake you up on
  the wards 7m
• At night I have trouble sleeping like because of
  the phones ringing and babes crying and stuff.
  14f

32
Children and the sick role

• One element of being sick inhabiting what has
  been called the sick role, is the exemption
  from normal social role . And for children?
• Continuation of education
• Lack of emphasis on sleep and concern from
  children about this

33
Childrens recommendations.

• Hospitals are not generally scary places
• Some clinical procedures, where children are
  actively engaged and informed, are consistently
  found to be interesting rather than frightening
• The experience of cannulation is consistently
  traumatic and such trauma can be recalled over
  protracted periods of time
• Older children may bring with them a range of
  experiences that may make the hospital a more
  scary place including negative experiences of
  health care encounters as well as virtual
  experiences
• Children understand hospital spaces in terms of
  the activities (including clinical procedures)
  that they perceive take place within them
• Children want age-appropriate recreational
  activities to be available to them when they feel
  well enough to engage with them
• Sleep is important to children and hospital
  environments often do not optimise childrens
  opportunities for rest and sleep