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50  The Spectrum of Patient and Caregiver Experiences

schools were less than happy to have her
because of the medical complications she
posed. We had to give very detailed lessons
to the staff at day care about what to do if
her tube became infected or came out. Her
preschool teacher refused to be responsible for medical emergencies, so we had to
train another person from the administration. At home, we had to keep her in a crib
and diapers for much longer than she
would have normally because we were
afraid of her getting up at night and pulling out her tube. Most nights we were
woken by alarms because she had rolled
over in her sleep and the tube was kinked.
Because she was also tube fed, four out of
seven nights a week she would be throwing
up. My husband and I would team up with
one of us holding her over the soiled bed,
still hooked to the PD machine, while the
other one changed the sheets. We bought
bed sheets in bulk because we went through
them so quickly. I don’t think anyone in the
family had a full night’s sleep for the entire
year that she was on PD before her transplant. We devoted a room just for the supplies  – so many boxes! They stretched to
the ceiling! The amount of care we needed
to take to ensure that our child didn’t get
infected – from the masks, the washing, to
the ‘not opening the door while you’re
hooking her up.’ It was nerve-racking. But
it was a relief to know that PD was eliminating more waste from her system than
the hemodialysis.

Robert’s Mother: Our decision to do
peritoneal dialysis was an easy one. I had
so many questions about what the best
thing for Robert would be but it all boiled
down to one thing. We lived in a very rural
state that is often snowy in the winter. The
only way we could go home would be if we
learned to do PD on our own and flew back
for appointments every month. Learning to
do PD was not quick or easy. Robert had to
heal after having the PD tube inserted

965

before PD could be started. I would go to
PD school while Robert was receiving
hemodialysis. It looks easier in the books
and diagrams than it is in real life when
you are tired and the machine is beeping
and you are trying to figure out why and
how to fix it. The sterile technique required
was also very challenging. Everything
about dialysis was hard. There was so
much to worry about. I remember packing
dialysis supplies into plastic bags to load
into the back of the truck so that we could
make the drive home from the Ronald
McDonald House. My parents spent hours
at our home rearranging bedrooms so that
there would be a room for my son and all of

his supplies, and so that he could start dialysis as soon as we got home. I remember
cutting a hole in our bathroom wall so that
we could drain into the septic system
instead of the kitchen sink. I remember trying to time dialysis so that my son could go
to church, schools, and activities with
friends. I remember being told yet again
that his phosphorus level was too high, and
we needed to work even harder at managing his diet. I remember trying to keep track
of the supplies and order them during the
“order window” for our delivery.

Box 50.6 Financial Burden

Lily’s Mother: We relocated to a different
state for 3 years so that our daughter could
receive the very best nephrology care, and
so that our older daughter could be cared
for by her grandparents. We also enrolled
our older daughter in a full-time preschool
while I was at the hospital with Lily. During
those 3  years, my husband flew back and
forth regularly to his job in a different state.
Thankfully, we were able to afford the
curveball that life had thrown at us.
Anna’s Mother: Dialysis was a life
saver, yet was incredibly disruptive to our


966

lives. My husband is an entrepreneur and he
had to close his business to take a job that
had insurance. I had to go on family leave to
spend my time taking Anna to and from dialysis appointments. Eventually I returned to
work part-time, but was unable to work fulltime because of her medical needs.
Robert’s Mother: Flying to the hospital every month was a challenge both financially and physically. It takes a lot of
planning to make sure that you take the
right supplies for the trip. I often had to
repack our bags because the dialysate bags
weighed more than what the airline would
allow in a suitcase. It is hard to take a PD
machine through an airport security
checkpoint.

The Patient Experience

A. Tong et al.

smaller than their peers – “I’m a teenager but get
treated like a dumb kid because I’m so small. I
hate it when people say, ‘Oh, what a nice little
girl!’” [18]. They feel inferior, and some boys in
particular have concerns about being less “masculine” [12].
Sickly and Weak  Compared with their well siblings and peers, children on dialysis perceive that
they are weaker and less able to participate in
activities. They are unable to keep up with others
because of their ill-health, fatigue, and lack of
energy  – “They are healthier than me, but I’m
weak. Because of my disease, I feel different.
They can do whatever they want. But I can’t. I

have to come to a dialysis centre three times a
week” [19]. Some feel ashamed about being the
“kidney patient” and choose not to disclose their
diagnosis to others. They lose their once-held
notion of youthful invincibility and instead feel
vulnerable.

Look, we’re like Frankenstein. It’s having all these
tubes stuck into us. They’re trying to make us like
zombies. [17]

Injustice  Some question why they have CKD
and feel that it is unfair to have to live with the
disease and have to do dialysis, particularly
because the disease was not their fault. They
describe dialysis as having “robbed” them of the
lifestyle they wanted.

Body Image and Physical Appearance  Some
children and adolescents feel self-conscious
about the appearance of the catheters, fistulas,
and cannulas required for dialysis access and the
surgical scars – “It can make you a bit like self-­
conscious if you have the tube. You worry that
people can see it through your clothes or the
scars, like all the scars, when you go to the beach
or something you worry that people are looking
at your scars. I suffer with people looking at my
scars, I don’t really like them looking at my
scars” [12]. Some attempt to conceal their catheter under their clothing. They describe themselves as being a “freak” [18] or “weird,”

believing that they look like “Frankenstein…and
zombies” [17]; and being teased by friends  –
“when my friends see my fistula they jeer me by
saying ‘what is this, you are like an engine,
where is your power socket?’ And I avoid them”
[19]. Some worry about being shorter and

Being a Burden  Some children on dialysis
believe that they are a burden on their families –
“I feel as if I’m a burden on my family members’
shoulder” [19]. They harbor guilt for having to
depend on their parents and siblings for medical
care and support, daily tasks, and for depriving
their families of the freedom to do what they
wanted such as travelling. Some feel at fault for
being a financial burden on their family  – “It
affected both economics and morale. My father
worried a lot, my mother had stomach problems. It is difficult economically to travel to the
hemodialysis centre” [19]. Some regard themselves as a disappointment to their parents
because they cannot achieve or meet their
expectations in the areas of academics or sports.
“I’m like I’m sorry for being born, I’m sorry for
doing dialysis, you don’t know how it feels. [My
parents] say stuff like I’m not doing anything
with my life” [12].

Feeling Different


50  The Spectrum of Patient and Caregiver Experiences

Loss of Control
A prisoner to the machine. [20]

Prognostic Uncertainty  Some children and
adolescents on dialysis worry about hospitalization and the need for surgical procedures  –
“going from living a normal life, from what I
knew, to being in hospital most of the time, and
having surgery done every now and then, I don’t
like it” [12]. Some have fears about their own
mortality – “I’m home alone, then I’d probably
die on the couch. I fear that. Just pass out and
don’t wake up. That’s what I fear” [12] and “I
have to ­constantly lie down. This makes me feel
I’m going to die” [19]. The uncertainty about
their chances of receiving a kidney transplant
can cause angst and distress, while at the same
time they fear the pain and complications that
may occur after transplant including graft loss
and having to return to dialysis – “I’m thinking
oh I’m not going to get a transplant so I’m not
going to bother with going through that effort
just to know that everything’s just gonna go
downhill again” [12]; as well as death – “I don’t
like how I am at risk of it dying again and then I
am going to have to go into surgery and then
what are we going to do  – so … that’s what I
don’t like really. I don’t like being at risk of
dying” [21]. Some children worry about their
potential living kidney donor – “I’m still worried

about the transplant, worried about the possibility of something happening to [my brother]. I
don’t want to lose my only brother” [12].
Relying on Parental Caregivers  Children
depend on their parents to help with dialysis,
medications, and attending clinical appointments – “My parents are very involved in caring
for me and my kidney disease; I depend on them
a lot” [22]. However, some are frustrated and
feel like a “baby” [22] when they believe their
parents are “super protective” [23] and did not
trust them to manage or make choices about their
own treatment.
Dependence on the Dialysis Machine  Being
forced to undergo the constant, grueling, and

967

“relentless” [20] regimen of dialysis for survival
caused some children and adolescents to feel
frustrated and helpless. Some refer to themselves
as “puppets pulled by strings, forever managed
by hoses and tubes” [17]. They lose a sense of
bodily integrity and “intactness” [17] in having a
body “full of holes” [20] and controlled by medical interventions.
Unbearable and Debilitating Symptoms  Dialysis-­
related symptoms such as headache, fatigue, and
itch can be intolerable – “The machine is too bad.
I have a headache after dialysis sessions. My
blood pressure sometimes drops. I feel exhausted
and I can’t walk” [19].
Limiting Future Possibilities  Particularly for

adolescents, they feel anxious that dialysis can
threaten their ability to work or pursue their
career goals – “It’s always been a military career
for me and nothing else, and the thing is that this
kidney puts that whole dream and that whole lifestyle at risk…that’s like the only career I’ve ever
wanted, I can’t think of myself doing anything
else. This [dialysis] seems to have taken a lot of
things away” [12]. They have concerns about
being able to establish a relationship with a partner and how dialysis impacts fertility – “With my
future, I’m mostly worried about relationships.
Will I ever meet a guy who’ll be there for me no
matter what? Will he care if I’m still doing dialysis?” [12].

Lifestyle Restrictions
I would have wished to be normal and see how
my life would have been if I didn’t get [kidney
disease]. I’d be a better student, a straight-A student. [24]

Social Isolation  Children and adolescents on
dialysis can feel socially isolated as a consequence of being ill, having to do dialysis, attend
clinical appointments, and being frequently hospitalized for complications. They are often absent
from school and cannot participate in extracurricular or recreational activities with peers – “you
feel tired every day, you can’t do anything, and


A. Tong et al.

968

you’re so distanced from your friends, like they’re

off enjoying being eighteen, going to parties and
everything, and I’m here stuck doing dialysis”
[12]. They feel excluded from what their friends
are able to do  – “I do dialysis every night so I
can’t go to sleepovers, camp, or anything…[I
feel] left out! … You just feel like you can’t do
anything and [can’t] go out by yourself” [24].
For those doing in-center hemodialysis, they feel
trapped and stuck  – “When I came here to the
hospital, I felt like I was trapped in a prison and
I can’t do anything about it. I hate it and I’m sick
of the same place. Over and over again doing the
same thing, same place, etc.” [12]. Also, some are
frustrated in having to be cautious, such as avoiding swimming with a PD catheter, because they
would be excluded from joining in activities with
their friends.
Being Absent from School  As a consequence of
the fatigue from doing dialysis, some children
and adolescents struggle to attend school and
engage in study. Some feel ashamed about their
poor results and fear other children teasing or
“laughing” [25] at them for being behind in their
studies. Some encounter a lack of understanding
and pressure in the school environment – “I hate
how people are always on my back at school.
When I tell them the reason why I can’t do full
time, they just say I use dialysis as an excuse”
[12]. Some younger children worried about their
ability to continue schooling – “I can’t sleep at
nights. I always think what would I do if I can’t

recover and I can’t go to the high school” [19].

Managing Treatment
It’s my dialysis and nobody else’s. [26]

Taking Ownership  Some adolescents want
ownership of their dialysis and to be more independent in managing their treatment; and to be
able to integrate and minimize the disruption of
dialysis in their daily lives. They believe it is
important to be given the flexibility and be
empowered with technical confidence through
training and support to manage dialysis, and to be

able to adjust the treatment based on their symptoms and lifestyle. Particularly for those on home
hemodialysis, they can “base my dialysis times
around my lifestyle” [12].
Communication and Involvement in Decision-­
Making  Some want opportunities for more
involvement in decision-making about their treatment, including dialysis, medications, diet, surgical procedures, and kidney transplantation. Some
feel they often have no choice and just accept the
necessity of having “needles, growth hormone,
or surgery” [23]. They feel intimidated because
they expect they may be ignored, judged, or reprimanded by clinicians and parents if they voice
their preferences – “I don’t talk to doctors a lot. I
just sit there and let mum talk” [23].
Adhering to Treatment  Some resent and struggle to adhere to the dietary and fluid restrictions
because it interferes with their lives – “The main
thing is that you can’t drink as much as you like.
It was hard to play football this year because
dialysis interfered with my practice time” [24].

They feel frustrated, particularly if they are reprimanded by their parents or clinicians for not
adhering to their diet and fluid recommendations. Regarding medications, some find it difficult to remember to take medications, to swallow
the medications, and bear the side effects  –
“some medications make me have vertigo and
nausea” [19]. Certain medications can be difficult to take as they make children feel sick – “I
didn’t take my tablets because they made me
sick. Oh they are disgusting! I took a sip and I
threw up. They said if I didn’t drink it I wouldn’t
be able to eat. I still ate” [23]. Some children
and adolescents are embarrassed about taking
medications in front of others. Some find it
patronizing and frustrating if their doctors doubt
that they are taking medications.

Coping Strategies
[It’s hard], but you persevere through it and you
learn. You gain from the experience and you grow
through it. It’s very much a growing experience. I


50  The Spectrum of Patient and Caregiver Experiences
just try to live my life to the fullest as possible
every day. I know kids in the hospital for whom
this is so bad. They say if they hadn’t gotten sick
or if they had done this or that, they wouldn’t
have gotten kidney failure. But I don’t think about
what I could have done. I think about what I can
do now. [22]

Determination and Self-Awareness  Some children and adolescents refuse to allow dialysis to

dictate and constrain their lives by trying to live
as normally as they could – “if there’s something
that I want to do, I go ahead and do it; I don’t let
my kidney disease stop me” [22]. Some regard
dialysis as a job – “I kind of think of it as a job. I
feel I’m going to work, because it is like working,
because I’m setting up my machine, taking myself
off and leaving” [26]. Over time, they gain awareness about their own resilience, maturity, and
strength they had developed whilst on dialysis –
“I didn’t mind going back to dialysis very much
because I did get to mature a lot more as a person
within a quick vicinity of time” [12].
Participating in Activities  To overcome the constraints and stress of dialysis, some make efforts
to engage in various activities including walking,
talking with others, and listening to music  – “I
listen to music sometimes just to get my frustration out. I might go out … to volunteer to get
away from the atmosphere I’m always surrounded by. I might talk to one of my close
friends, maybe even a family member” [24]. For
some who had to give up activities prior to commencing dialysis (e.g., swimming and contact
sports), they chose different sports or activities
they were able to do.
Hope for Kidney Transplant  Whilst on dialysis,
some wait in hope for a kidney transplant, which
would allow them to regain independence and
live a normal life – “It would make me feel better,
like make me feel stronger” [21].
Social Support  Children on dialysis value the
social, emotional, and practical support from
family members and friends, who provided them
reassurance, comfort, and encouragement. Some

appreciate that their siblings and friends regarded
them as “normal” [22].

969

The Caregiver Experience
Parents of children on dialysis can experience
emotional turmoil, uncertainty about their child’s
prognosis, and loss of control in having to relinquish aspects of their child’s care to clinicians
[15, 27–29]. They also contend with changes in
family dynamics, including spousal relationships, and lifestyle restrictions [15]. From the
parental perspective, the burden of caregiving
encompasses having to meet the demands of
medical care, overcoming challenges of providing adequate nutrition while adhering to diet and
fluid restrictions, organizing logistics including
transportation and accommodation, comprehending overwhelming and complex information,
managing the psychosocial and educational
needs of their child, and dealing with financial
hardship [15, 16, 27–32].
The domains of the caregiver experience covered in this chapter will include: emotional turmoil and uncertainty, loss of control, change in
family dynamics, lifestyle restrictions, caregiver
burden, financial burden, and personal growth.
The stories of five mothers caring for a child on
dialysis illustrate each of these domains (Boxes
50.1, 50.2, 50.3, 50.4, 50.5, and 50.6). The names
of the children on dialysis, Lily, Robert, Thomas,
Anna and Jacob, have been changed to protect
their identities.

Emotional Turmoil and Uncertainty

Initial Diagnosis  Parents of children on dialysis
face many different emotions, particularly shock,
at the time of diagnosis [32]. They are often
thrown into the caregiver role without warning
and feel expected to understand complex medical
information very quickly [28, 32]  – “You don’t
remember at the time because you are shocked
and you are, like, in a shadow; you can’t think at
that moment because it’s just bombarded with all
this bad information” [32]. Parents ask
­themselves questions such as “Why is this happening to my child?” and “How long will my
child be on dialysis?” They wonder about their
child’s future and if everything will eventually be


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970

okay. Selected excerpts from real life parental
stories that illustrate the range of emotions faced
by caregivers upon initial diagnosis are provided
in Box 50.1.
Uncertainty About the Future  Caregivers can
feel overwhelmed about the future of their child
on dialysis. They wonder if a transplant will be
possible [32]. It can be devastating for parents if
their child has to remain on or return to dialysis.
They may also worry about morbidity and mortality of their child on dialysis [32] (Box 50.1).

Loss of Control
Loss of Childhood Milestones  Parents mourn
the loss of a “normal” childhood for their child
on dialysis. Developmental milestones including
eating, walking, talking, bathing, and growing
are often delayed during dialysis. Parents are
also concerned about the long-term consequences of dialysis on the child’s future health,
academic development, and relationships [13,
23] (Box 50.2).
Trust in the Clinician and Care Team  Parents
need to feel comfortable with their child’s care
team [31], particularly as they need to relinquish
control of their child to clinicians [15]. The relationships forged with the doctors, nurses, and
other support staff are incredibly important. “I’ve
been living with this for 3 years; I know what I’m
talking about. It sort of reached a point with me
that I thought, we’re losing control over our own
child … I made the decision that I’m calling the
shots … we really had to sort of push our way to
the front” [29]. They appreciated clinicians who
provided clear and comprehensive information
[32]. Some parents travel or relocate to access
quality care for their child (Box 50.2).

Change in Family Dynamics
Having a child on dialysis imposes stress on relationships within the family. Some parents experience strain in their marriage, and may feel unable

to devote adequate attention to their other children because of the medical and healthcare needs
of their child on dialysis [28].
Strain on Marriage and Relationships  Some

caregivers struggle with disagreements with their
partner in providing care for their child on dialysis. They are aware of the need to take “time
outs” with partners to maintain healthy relationships but find it difficult to find the time to do so
[33]. Some rely on support from extended family
to share caregiving responsibilities (Box 50.3).

Sibling Inattention and Neglect  Having to
explain dialysis to siblings is a challenge for
caregivers. Some feel they must justify the extra
time, attention, and resources needed to care for
their child on dialysis. Some worry about sibling
resentment and neglect [15] and look for ways to
incorporate siblings into daily life, and to ensure
that they spend one-on-one time with their other
children (Box 50.3).
Need for Support  Despite being overwhelmed
by their child being on dialysis, some caregivers
find it difficult to ask for or accept help from family and friends. Caregivers can feel isolated
because of the lack of understanding from others
about the medical challenges the family is facing
[15, 28]. Some turn to social media to communicate updates and to convey the most important
information regarding their child’s medical situation (Box 50.3).

Lifestyle Restrictions
The grueling dialysis regimen and complex fluid
and dietary requirements restricts freedom to
travel, participate in social activities, and pursue
career goals [15, 32]. The multiple challenges of
managing fluid and dietary requirements include
feeding through the NG or G-tube, which can

cause discomfort; and adhering to dietary and
fluid restrictions, whilst at the same time ensuring
that their child is receiving adequate nutrition
[28]. Parents also need to obtain supplies for dial-