I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: natnnnat on June 19, 2010, 12:31:39 AM
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There's been some discussion on another news thread about reasons why people might not take tablets all the time. (e.g. http://ihatedialysis.com/forum/index.php?topic=19214.msg327501#msg327501 (http://e.g. http://ihatedialysis.com/forum/index.php?topic=19214.msg327501#msg327501)) It reminds me of an article I came across awhile ago, which is about why children aren't always compliant. I liked the comment in the abstract: "Renal compliance studies are usually premised on the assumption that children will automatically comply with treatment and/or that blame for non-compliance rests with the child and family. "
Waters, A. L. (2008). "An : experiences of children and young people with long-term renal illness." Journal of Clinical Nursing 17(23): 3103-3114.
AIM: This study explored the experience of long-term renal illness, including issues concerning compliance with treatment, from the perspectives of children and young people.
BACKGROUND: Children and young people have difficulty complying with renal treatment; research in this area usually focuses on their compliance with a narrow range of behaviours: compliance with dialysis, tablet taking and dietary and fluid restrictions. Renal compliance studies are usually premised on the assumption that children will automatically comply with treatment and/or that blame for non-compliance rests with the child and family.
DESIGN: The study, underpinned by a view of children as competent social agents, used ethnography to explore and describe the everyday experience of long-term renal illness.
METHOD: Ethnographic fieldwork--involving participant observation, informal interviews and the use of children's drawings--took place over 16 months in a hospital renal unit comprising an inpatient ward, a haemodialysis unit and an outpatient clinic. The primary participants were 13 children; 14 carers and 36 staff members also participated. Data were interrogated through descriptive and thematic forms of analysis.
RESULTS: This study reveals participants' perspectives on the physical and social impact of renal treatment. It also provides a conceptualisation of life with long-term renal illness that highlights children's management of 'illness labour', their inhabitation 'renal geographical space', 'a renal body' and a 'renal social world'. CONCLUSIONS: These findings show how compliance with renal treatment involves particular embodied experiences that are hard for children to manage. Traditional views of compliance/non-compliance render children's embodied experience and their labour in managing dialysis, thirst and their difficulties with tablet taking irrelevant, whilst this study shows these as highly relevant to children.
RELEVANCE TO CLINICAL PRACTICE: The conceptualisation of children's experience arising in this study provides a new way of considering the embodied experience of children with long-term renal illness.
[….a couple of lengthly excerpts from this article follow…..]
Ilness labour
I defined ‘illness labour’ as the hard work, skill and
commitment children needed to manage everyday life with
their illness. The five themes involved (Table 3) are central to
understanding children’s experience of long-term renal illness,
the focus of the study. Children laboured back and forth
between two, sometimes three renal replacement therapies –
PD, haemodialysis and kidney transplantation. For example a
child might experience one therapy (PD or haemodialysis)
whilst simultaneously being prepared for another (kidney
transplantation). The labour involved in these transitions
was considerable, each therapy involving bodily invasive
treatments and complex technologies, all of which were
sometimes frightening. Figures 1 and 2, drawn six months
apart, imply some of one girls’ experience of PD followed by
transplantation.
Children often said they were: ‘waiting for a kidney’. This
was an ambiguous experience: children often looked forward
to and badly wanted a kidney, yet the process was sometimes
associated with tension, emotional pain and distress. There
was a sense in which children were in limbo, as they
experienced waiting for a kidney through their frames of
reference, as children. One 10-year-old boy, when he saw his
best friend prepared for transplantation, was bewildered and
repeatedly asked why he could not have a new kidney.
Poignantly he kept asking his family and also a nurse for their
kidneys.
The ambiguity associated with ‘waiting for a kidney’ is
further illustrated by a nurse’s comments. She explained
that one year, near Christmas, she asked a child having PD
if she had written her letter to Father Christmas yet. The
child said she was not going to bother, she had asked for a
kidney for four years and Father Christmas did not give it.
The nurse went on to explain that the child knew several
children who had received kidneys and she just wanted one
for herself.
These findings exemplify illness labour, indicating that
waiting and hoping for a kidney can be a lengthy and
emotionally demanding process. Children were constantly
engaged in illness labour, investing enormous time, thought
and energy in working with the multiple threats to their
bodily integrity that arose as they experienced different
replacement therapies. They consistently cooperated with
parental and staff expectations that they would comply with
all aspects of replacement therapy, including a complicated
renal diet, multiple episodes of tablet taking each day and, for
those having dialysis, remarkably low fluid restrictions.
However, despite their goodwill and their labour, children
found it difficult to meet all expectations, all the time.
Renal space: the renal world
Illness labour (above) and the renal world (comprising the
three themes below) were closely linked; there were multiple
relationships between the overall group of eight themes.
The inhabitation of renal geographical space
Renal geographical space refers to the spaces children
accessed frequently in managing illness; children seemed
almost to inhabit the ward and clinics of the renal unit they
were present so much, because of their illness. Treatment was
found to have an impact on children in renal failure and on
the family to such an extent that siblings and parents/carers
and sometimes siblings also experienced hospitalisation and
lifestyle restrictions – a salient finding.
The haemodialysis unit
Attendance for haemodialysis was extraordinarily demanding.
Each session, on three alternate days a week, involved
approximately four hours of dialysis and at least two hours of
travelling, often many more hours than this. Children never
missed a single session, a remarkable finding. A nurse summed
up the nature of haemodialysis in saying:
Haemodialysis is relentless. It is simply relentless, an absolute
necessity...They (CYP) just turn up every other day.
A 10-year old girl, in her biography (Table 4), alluded to
haemodialysis as dominating her life. This child experienced
haemodialysis for a few months and then changed to PD at
home. Following several weeks of PD, she reverted to
haemodialysis which for this child involved an 80 mile round
trip for each session. Reflecting on her dialysis experience
(following kidney transplantation), she described a vivid
nightmare, where she accidentally switched from PD to
haemodialysis whilst her father and her nurse were unaware
this was happening to her.
Children having haemodialysis were noticeably knowledgeable
and vigilant. For example, their consideration of
their body fluids was very striking. They watched their
blood filled haemodialysis lines, as fluids moved from
inside their bodies to the haemodialysis machine and back
again. Also they closely observed new nurses, relaxing only
when they saw evidence that nurses had become sufficiently
skilled.
The renal home
One child experienced PD at home for almost a year saying
she had few problems with this treatment. Figure 1 shows
how she drew herself attached to her machine in her bedroom.
However, numerous children complained to me about
PD at home: a 14-year-old boy saw his 12 hours of attachment
to the PD machine as destroying his life seeing himself a
prisoner to the machine. His mother said PD was ‘driving him
mad’. Another mother described PD as: ‘draining, just
draining’.
Nurses said ‘the machine’ made children go to bed early
and prevented sleepovers, taking away the things children
liked to do. A nurse, speaking of a child who hated PD and
put her machine out of sight every morning for five years,
said:
Children have to adapt to their lives with the machine. One child
used to assault the PD machine she used to kick it.
Living in a renal body
Thirst
Children having dialysis were very thirsty. For example, a 10-
year-old girl had a fluid restriction of 800 ml/day; 400 ml
were given as an overnight feed, leaving 400 ml ‘free fluid’ to
drink over the day. Physically unable to tolerate the level of
thirst this restriction imposed, she responded by drinking
more.
Also, a 16-year-old boy said he hid drinks and he stole
drinks:
when I am choking thirsty.
This was a poignant remark, speaking volumes about his
experience. It was also poignant that adults described young
children as drinking from taps, steam irons, saucers beneath
plant pots and toilet bowls. These findings demonstrate that
low fluid allowances were virtually impossible for most
children to achieve.
Medicines
All children ingested a wide range of oral tablets and medicines;
they also experienced subcutaneous drug administration
and many intravenous therapies. A nurse clarified: ‘All
our children have two drug charts. A child in chronic renal
failure needs at least 10–12 different medicines’. Nurses, on
many occasions, said they could not possibly take the tablets
that children were expected to take.
Managing medicines was very difficult for some children.
They had so many to take, there were so many changes in
regimes and there were numerous criteria applying to
individual medicines – some were taken on an empty
stomach, some with food, some on a daily basis, some on
alternate days and one was withheld sometimes before
coming to clinic for blood tests.
Children had many strategies for managing medicines, such
as setting phone reminders and one girl said ‘when Neighbours
finishes I just go for it’. They also explained following:
‘they’re too big’; ‘I forget’; ‘I am too tired to remember’; ‘I
keep forgetting again and again’; ‘my mum forgets’ ‘there’s
too many’; ‘they go down and then they come back up again’;
‘when they come back up I can’t get them down again. I just
can’t’ and ‘they taste disgusting’. One 10-year-old girl
implied that staff were unreasonable and unrealistic, in their
expectations about how many medicines she should take,
saying:
They make ME take them but THEY couldn’t do it.
This child said she threw tablets out of the ward window
until a staff nurse realised what she was doing.
Scarring
Children’s bodies shared many ‘renal’ characteristics; one
child described herself as ‘full of holes’. Children’s scars
were visible on the neck, arms and chest, from the
insertion of intravenous and central venous catheters.
The abdomen was scarred because of PD catheters,
gastrostomy tubes and the insertion of a kidney (or
kidneys) when transplantation occurred. Some children had
scarring resulting from the removal of their own kidneys
and also the removal of transplanted kidneys that had been
rejected. Other scars resulted from surgery for renal tract
abnormalities, others from the removal of the gall bladder
or the spleen. Also, arterovenous fistulae were
noticeable as a bobble on the upper arm surface, near the
elbow.
Bodies under pressure
The bodily demands outlined so far were ever present, in
hospital, at school and at home and pressure varied across
individual illness trajectories. For example, one 10-year-old
boy was stable having haemodialysis for several months,
usually full of fun. However, an acute illness resulted in
many gruellingly bodily experiences and he almost died.
Eventually he re-stabilised, only to enter a phase of
ambiguity and uncertainty as he was prepared for a kidney
transplant from his mother; this terrified him as he
contemplated his own and his mothers’ possible death. This
boy’s situation highlights the experience of a renal body in
a physical sense and it graphically illustrates the abstract
pressures involved in renal illness, notably the fear
and ambiguity that was often involved in kidney
transplantation. Figure 2 (drawn one month prior to a
scheduled transplant from her mother) implies this in
illustrating how a 10-year-old girl anticipated she would
be following kidney transplantation. On the morning of
her transplant she said she did not want the operation.
Waiting for a kidney
Waiting and ambiguity were central features of children’s
experience; they waited, often for many years for a kidney
transplant, ‘I am on call’, they said. One day a 14-year-old
boy (who desperately wanted a ‘new kidney’, to get away
from PD, he explained) told a new staff nurse that he had
already had a kidney transplant. He returned to her
later that day apologetically saying he had been: ‘just
kidding’.
A nurse said children’s lives were ‘gruelling’, describing
their treatment as ‘brutal’. Parents and other staff expressed
similar views. Yet, through their own agency and competence
and with sustained support from parents and staff, CYP
survived and enjoyed many relationships and life
experiences. Nurses and doctors expressed their admiration
and respect to children directly, commenting on their courage
and tenacity.
[…..lots of text skipped over…]
Relevance to clinical practice
This is a study of children’s experience – the embodiment and
the social worlds of children – and findings may therefore
resonate with children’s healthcare practitioners and the
concept ‘illness labour’ may be relevant and useful in
practice. The findings contribute to renal nursing in showing
what compliance with renal treatment means to children and
young people and in highlighting the differences in the way
risk was constructed by CYP and the adults in the study.
In showing how children responded to their distressing
experience of thirst, the findings imply that children’s
experience of thirst in this context needs urgent research
attention. Similarly, children’s problems with tablets as hard
to swallow and the complexity of medication regimes
suggests this area needs research investigation from children’s
perspectives; renal literature focuses on tablet taking as a
problem in children’s behaviour whilst this study suggests the
problem lies with the tablets not the children.
In providing a conceptualisation of renal space, the study
potentially contributes to the renal nursing knowledge base
because it provides a new way of thinking and talking about
children’s experiences. The study provides a sense of the ways
in which children understood everyday experience and the
way they lived in a particular type of social world characterised
by ambiguity as they moved among and between
medical interventions. In showing the effort expended by
children in labouring through treatment, the study may
stimulate further child-centred studies.
The notion of a hybrid body was explored by Place (2000).
This study builds on this and also Prout (2000) in showing
the hybridity of the renal body. This study may be especially
significant in revealing the issues hybridity raised for children
themselves and may represent a new understanding of the
childhood body in this illness trajectory.
Finally, children’s community nurses and adult renal nurses
might gain enhanced understanding of the nature of ESRF for
children; adult nurses’ enhanced understanding may have
implications for children as adults when they transfer to adult
renal units.
Limitations
The study does not capture the experience of living with a
new kidney or living with dialysis in relative health, with rare
hospitalisation. I met families with this perspective but
because they attended hospital rarely, it was impossible to
recruit them to the study. Also, the study, a hospital
ethnography, did not involve children’s homes; yet home is
clearly an important dimension of children’s experience.
Future research might illuminate these areas.
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I read this article again as I pasted it in, an chuckled at the girl throwing her tablets out the window. Gregory wanted to know why I was chuckling so I read that bit out to him and he started talking about medicine being hard to take.
At first they gave them cyclosporin like in a syringe with a yellow fluid and you’d put it into a glass. One time the nurse tried to give it to him in a plastic cup and the cup melted. You had to drink it with orange juice or milk, it wouldn’t dissolve in water, it was like oil, it was horrible stuff. Then they went onto cyclosporine, but the tablets were the size of bullets. We don’t know enough about bullets to clarify what size bullet ;) . He shows me the size with his fingers, they were about an inch long, and as thick as a pencil. They used to come back up again, he agrees. Immuran too, he remembers, they stopped that, it caused cancer. Then they brought out Cellcept.