How Do Families Adjust to Having a Child with
Chronic Kidney Failure? A Systematic Review
Michael D. Aldridge
he treatment of kidney failure
T in the pediatric population
presents many challenges for
the health care team as well as
the children and families affected by
the disease. According to the 2007
United States Renal Data System
(USRDS) report, 1,292 children (19
years old or younger) were receiving
hemodialysis (HD) and 892 were
receiving peritoneal dialysis (PD) in
the U.S. in December of 2005
(USRDS, 2007). In addition, there
were 5,104 children with a function-
ing graft (USRDS, 2007).
Although the number of children
with kidney failure is relatively
small, the disease carries a high bur-
den for both children and their fam-
ilies that persists throughout the life-
span. Pediatric kidney failure is char-
acterized by recurring cycles of dial-
ysis and transplant, and long-term
outcome studies of children surviv-
ing into adulthood are now emerging
in the literature. A single-center
study of 98 children in the United
Kingdom (UK) who were followed
into adulthood showed that 39% of
patients who were transplanted as
children returned to dialysis as an
adult (Shroff, Rees, Trompeter,
Hutchison, & Ledermann, 2006).
Another study of 75 adults who
received dialysis as a child in The
Netherlands described delayed
Michael D. Aldridge, MSN, RN, CCRN, CNS,
is Doctoral Student and Assistant Instructor of
Clinical Nursing, The University of Texas at Austin
School of Nursing. He is also a Staff Nurse,
Childrens Dialysis Clinic of Central Texas, Austin,
TX.
Notice: The data reported here have been supplied
by the United States Renal Data System (USRDS).
The interpretation and reporting of these data are
the responsibility of the author and in no way should
be seen as an official policy or interpretation of the
U.S. government.
NEPHROLOGY NURSING JOURNAL March-April 2008 Vol. 35, No. 2
Although the number of children with kidney failure is relatively small, the disease car-
ries a high burden for both children and their families that persists throughout the lifes-
pan. Eleven studies, published since 1980, which examine how families adjust to hav-
ing a child with chronic kidney failure, are reviewed. Parents tend to have high levels
of stress, depression, and anxiety, and those with lower socioeconomic status have more
difficulty adjusting. Parents describe uncertainty, social isolation, and increased care-
taking duties as contributing to the burden of the disease. Future research priorities are
identified. Measuring adjustment and developing interventions may ultimately improve
outcomes in these children.
social and psychosexual develop- focused on the psychosocial aspects
ment, decreased autonomy, and of the adjustment process. A recent
increased emotional problems as literature review (Darbyshire, Oster,
adults (Grootenhuis, Stam, Last, & & Henning, 2006) examined chil-
Groothoff, 2006). In addition, these drens experiences with kidney fail-
adults lived at home longer and had ure, but this review focused on the
decreased rates of marriage when childs experiences rather than the
compared to adults of the same age experiences of the family as a whole.
in the general population. Although many studies have been
Dialysis is not a benign therapy, published about the familys experi-
and having received dialysis as a ences in adjusting to having a child
child dramatically increases the risk with kidney failure, the studies have
of death from cardiovascular disease not been synthesized into a systemat-
during young adulthood (Flynn, ic literature review. Examining the
2006). Abnormal calcium-phospho- literature as a whole can help to
rus metabolism, microinflammation, identify common themes, as well as
hyperparathyroidism, and hyper- gaps that remain in our knowledge,
homocysteinemia likely contribute in order to guide future research.
to this increased risk (Oh et al., Therefore, the purpose of this article
2002), as well as hypertension, left is to review the studies performed in
ventricular hypertrophy, and dyslipi- the last 27 years describing how fam-
demia (McDonald & Craig, 2004). ilies adjust to having a child with kid-
Studies from both the United States ney failure. Studies published before
and Europe have indicated that car- 1980 were excluded since the treat-
diovascular disease is now the lead- ment for children with chronic kid-
ing cause of death in young adults ney failure was limited before that
who had kidney failure during child- time.
hood (Flynn, 2006). Thus, many chil-
dren with kidney failure may contin- Methods
ue to have both physical and social
problems into adulthood. Articles were located by search-
Due to the high burden of this ing three electronic databases
disease process, researchers have (CINAHL, Medline, and Psycinfo)
tried to understand the experiences with the terms adaptation or
of how both children and families adjustment and renal failure.
adjust to the child having kidney fail- The search was limited to articles
ure. The majority of this research has published in English from 1980 to
157
How Do Families Adjust to Having a Child with Chronic Kidney Failure? A Systematic Review

Table 1
Studies Examining Adjustment in Families with Children with Kidney Failure
Findings Relating to
Study Design Population Setting Measures Used Families and Parents
Brownbridge & Interview 73 children and adoles- UK Childrens health status ques- 1. Parents of children on dialysis had
Fielding, 1991 Survey cents on HD, CAPD or tionnaire greater psychological stress and mari-
Correlational home HD, and post- tal strain than parents of transplanted
analysis transplant and their par- Structured family interviews children.
ents 2. Parents of children receiving incenter
Psychological functioning ques- HD had increased anxiety and depres-
tionnaires: sion compared to parents of children
Childrens Depression Inventory receiving home dialysis (HD or CAPD)
State Trait Anxiety Inventory for
Children
Rutter A Scale
Leeds Scale for Anxiety and
Depression
Brownbridge & Interview 60 children and adoles- UK Structured family interviews Low treatment adherence associated with:
Fielding, 1994 Survey cents on HD or CAPD Psychological functioning ques- 1. poor adjustment to dialysis
Correlational and their parents tionnaires: 2. anxiety and depression
analysis Childrens Depression Inventory 3. adolescence
State Trait Anxiety Inventory for 4. increased duration of dialysis
Children 5. low SES
Rutter A Scale 6. single parent family structure
Leeds Scale for Anxiety and
Depression
Adherence measures:
Self-report
Serum potassium and BUN
Weight and blood pressure
Diet survey
Rating by consultant
Fielding & Interview 60 children and adoles- UK Same as Brownbridge & 1. Lower SES and increased social
Brownbridge, Survey cents on HD or CAPD Fielding, 1991 impairment of child correlated with
1999 Correlational and their parents increased depression and anxiety in
analysis parents.
2. Larger family size correlated with
increased anxiety in parents.
3. Increased satisfaction with dialysis
care correlated with decreased anxiety
and depression in parents.

MacDonald, 1995 Qualitative 4 mothers of children Canada Not applicable Central theme was uncertainty
ethnography on home PD 3 phases described:
1. Finding out
2. Learning to live with chronic illness
3. Worries about dreams and the future

January of 2007. This initial search
returned 144 articles that were then
screened for inclusion or exclusion
by reading the titles of the articles. If
the title of the article did not provide
enough information to determine
whether the criteria had been met,
the abstract was reviewed.
Inclusion criteria included quali-
tative or quantitative studies involv-
ing families with children less than
18 years of age who were diagnosed
with chronic kidney failure. In addi-
tion, the author had to describe
adjustment or adaptation as a con-
cept. Studies involving only children
with kidney transplants or acute kid-
ney failure were excluded, since
these illnesses likely involve different
elements of adaptation than chronic
kidney failure. Finally, anecdotal
and editorial articles were excluded.
After the initial search, five arti-
cles met inclusion and exclusion cri-
teria. In addition to the articles locat-
ed in the electronic search, the refer-
ence lists of the included articles
were reviewed. An additional six
articles were located that also met
inclusion criteria, leading to a total of
11 articles for review.
Results
Table 1 is a summary of the arti-
cles in this review. The table lists the
design of the study, the population
studied, the setting for the study, the
measures and instruments used, and

158 NEPHROLOGY NURSING JOURNAL March-April 2008 Vol. 35, No. 2

 Table 1 (continued)
Studies Examining Adjustment in Families with Children with Kidney Failure
Findings Relating to
Study Design Population Setting Measures Used Families and Parents
Madden, Cross-sectional 43 adolescents with UK Strengths and Difficulties 1. Mothers believed their children had
Hastings, & survey with kidney failure and their Questionnaire (mothers and adjustment problems, but the children
VantHoff, 2002 regression mothers adolescents) did not rate themselves as poorly
analysis General health questionnaire adjusted.
7 children receiving PD (mothers) 2. Severity of illness not a significant
majority were post- Coping Health Inventory for predictor of adjustment.
transplant Parents (mothers) 3. Mothers with more psychological
Childs illness severity classified problems rated children as having
by consultant more behavior problems.

Middleton, 1996 Qualitative analy- 13 parents with children UK Not applicable Themes included:
sis of themes receiving home PD 1. Social isolation
emerging from (5 fathers, 8 mothers) 2. A need to become the expert in their
a support childs medical care
group 3. Difficulty in leaving child in the care of
other adults (trust)

Nicholas, 1999 Qualitative 32 mothers with a child Canada Not applicable Themes included:
ethnography with kidney failure (mix 1. Increased amount of caretaking com-
(interview plus of HD, PD, and trans- pared to other mothers (may be
observation) plant) trapped, adaptive, or embedded)
2. Heightened vigilance and monitoring

Reichwald- Semi-structured 20 families with kidney Germany Questionnaire filled out by Parents in both groups describe dialysis
Klugger et al., interviews and failure (10 with home parents not well described as a burden characterized by restless-
1984 questionnaires HD, 10 with incenter regarded tolerance of treat- ness, fear of complications, and fami-
HD) ment ly life dependent on the therapy.
Parents in the home HD group worried
about being able to access the fistula
and felt guilty if they missed the punc-
ture attempt.
Reynolds, Case-control 3 groups: UK Structured interviews 1. Parents in dialysis group reported
Farralda, 22 families with children increased disruption of family life ver-
Jameson, & on hospital dialysis General Health Questionnaire sus other groups.
Postlethwaite, (incenter HD) (GHQ28) 2. Parents in dialysis group reported
1988 increased marital strain (but not
22 matched families
Social Stress and Supports breakup) versus other groups.
with children with kid-
Interview (SSSI) 3. Unable to detect significant differences
ney failure not receiving
in stress levels of parents in all three
dialysis
groups.
31 matched healthy
controls

Tsai, Liu, Tsai, & Case-control 32 parents with children Taiwan 1. Taiwanese Depression 1. Study group had increased rate of
Chou, 2006 on CAPD and APD Questionnaire depression versus control group.
(study group) 2. World Health Organization 2. All dimensions of quality of life lower
64 parents of healthy Quality of Life BRIEF in study group versus control group.
children (control group) Taiwan version

Watson, 1997 Longitudinal 38 families assessed 2 centers: Perceived stress scale (PSS10) 1. Mothers had higher stress and anxiety
study before starting dialysis UK Hospital anxiety and depression scores than fathers.
and then at 3 months, 6 (Nottingha scale (HADS) 2. Mothers and fathers with children
months, and 1 year. m) Information needs greater than 10 years of age had
Families with previous N = 24 Impact of illness questionnaire higher scores of stress, anxiety, and
dialysis experience US (Kansas Burden of care assessment depression compared to parents with
excluded. City) (completed by medical staff) children less than 10 years of age.
N = 14 3. Mothers with high burden of care had
increased scores for stress, anxiety,
and depression.

Note: APD automated peritoneal dialysis; BUN blood urea nitrogen; CAPD continuous ambulatory peritoneal dialysis; HD hemodialysis; PD peritoneal
dialysis; SES socioeconomic status; UK United Kingdom

NEPHROLOGY NURSING JOURNAL March-April 2008 Vol. 35, No. 2 159

How Do Families Adjust to Having a Child with Chronic Kidney Failure? A Systematic Review
the findings related to families and
parents. Some of the studies also had
other findings that did not specifical-
ly relate to the topic of review.
The Concept of Adjustment
In the studies reviewed, authors
have used the terms adjustment and
adaptation interchangeably, al-
though the terms are not specifically
defined or operationalized. In general,
adjustment is defined broadly as a
response to a change in the environ-
ment that allows an organism to
become more suitably adapted to that
change (Sharpe & Curran, 2006, p.
1153). In other studies, adjustment to
illness is usually operationalized as a
positive quality of life, well-being, and
increased self-esteem. Therefore, mal-
adjustment is usually measured by the
presence of depression, anxiety, or
stress (Sharpe & Curran, 2006). For
the purpose of this review, adjustment
is defined as the ability to successfully
adjust to a new situation or challenge.
Measuring Adjustment
There is no single instrument that
measures adjustment in families who
have children with kidney failure. The
most common instruments used to
measure adjustment in parents assess
stress, anxiety, or depression. A wide
variety of instruments were used in
the studies included in this review,
including the Leeds scale for the self-
assessment of anxiety and depression
(Leeds SAD) (Brownbridge & Fielding,
1991; Brownbridge & Fielding, 1994;
Fielding & Brownbridge, 1999), the
General Health Questionnaire (GHQ-
28) (Madden, Hastings, & VantHoff,
2002; Reynolds, Garralda, Jameson,
& Postlethwaite, 1988), the Coping
Health Inventory for Parents (CHIP)
(Madden et al., 2002), the Social Stress
and Supports Interview (SSSI)
(Reynolds et al., 1988), the Taiwanese
Depression Questionnaire (Tsai, Liu,
Tsai, & Chou, 2006), the World Health
Organization Quality of Life BRIEF
Taiwan version (Tsai et al., 2006), the
Perceived Stress Scale (PSS10)
(Watson, 1997), and the Hospital
Anxiety and Depression Scale
(HADS) (Watson, 1997). Reliability
160
and validity of several of these instru-
ments are not well described in the arti-
cles (Brownbridge & Fielding, 1991;
Brownbridge & Fielding, 1994;
Fielding & Brownbridge, 1999;
Madden et al., 2002; Reynolds et al.,
1988). In addition, two researchers
developed their own questionnaires to
assess the impact of the childs illness
(Watson, 1997) and the tolerability of
the treatment (Reichwald-Klugger et
al., 1984). The reliability and validity
of these instruments has not been
established, and it is not known
whether the instruments truly meas-
ure the concept of adjustment. In
addition, the wide variety of instru-
ments used to measure stress, anxiety,
and depression makes it difficult to
compare findings from these studies.
Significant Findings
When taken as a whole, several
themes emerged from this collection
of literature. Families with children
receiving dialysis reported increased
disruption in family life and increased
marital stress, but not increased mari-
tal breakup (Reynolds et al., 1988). As
families adjust to having a child with
kidney failure, there are increased lev-
els of stress, anxiety, and depression in
parents (Brownbridge & Fielding,
1991; Brownbridge & Fielding, 1994;
Tsai et al., 2006; Watson, 1997). Tsai et
al. (2006) specifically compared par-
ents of children receiving home dialy-
sis to parents of healthy children.
They found that the parents of chil-
dren receiving home dialysis had
increased rates of depression and
lower quality of life when compared
to parents of healthy children. Since
stress, anxiety, and depression are
used to measure adjustment, parents
with increased levels of stress, anxiety,
and depression likely have more diffi-
culty adjusting to having a child with
kidney failure.
The majority of studies focus on
the caregiving experiences of the
mother (MacDonald, 1995; Madden
et al., 2002; Nicholas, 1999; Tsai et al.,
2006). The remaining studies do not
separate the responses of the mothers
and fathers, which makes it impossible
to tell if there are differences in how
NEPHROLOGY NURSING JOURNAL March-April 2008 Vol. 35, No. 2
mothers and fathers adjust to having a
child with kidney failure. None of the
studies describe the amount of care-
giving that the fathers performed.
Thus, more information about fathers
roles in caring for their children with
kidney failure is needed.
One would predict that the site of
care (home versus incenter [outpa-
tient]) would play a role in how fami-
lies adjust to the burden of kidney fail-
ure, since home therapies require
more direct caregiving from parents.
Studies examining this issue have
yielded conflicting results. Brown-
bridge and Fielding (1991) found that
parents of children receiving incenter
HD had increased anxiety and
depression when compared to parents
of children receiving home hemodial-
ysis (HHD) or continuous ambulatory
peritoneal dialysis (CAPD). However,
Reichwald-Klugger and colleagues
(1984) found that HHD was more
stressful for parents than incenter HD.
Thus, the relationship between where
children receive dialysis and how their
parents adjust to delivering the thera-
py remains equivocal due to the small
number of studies to date.
Low socioeconomic status (SES)
could be a factor that affects how fam-
ilies adjust to having a child with kid-
ney failure. Brownbridge and Fielding
(1994) found that low SES was associ-
ated with decreased adherence to
therapy. A later study by these authors
also found that low SES was associat-
ed with increased rates of anxiety and
depression in parents (Fielding &
Brownbridge, 1999). These results
support the idea that families with low
SES may have more difficulty adjust-
ing to having a child with kidney fail-
ure. The mechanism behind this rela-
tionship remains unclear, but may be
related to the increased levels of gen-
eral stress associated with low SES.
Qualitative studies describing the
concept of adjustment are rich with
detail. The overall burden of dialysis is
stressful, and is characterized by
themes such as uncertainty
(MacDonald, 1995), social isolation
(Middleton, 1996), and increased
caretaking, vigilance, and monitoring
(Middleton, 1996; Nicholas, 1999;
Reichwald-Klugger et al., 1984).
Elements of stress can be identified in
these qualitative studies. For example,
MacDonald (1995) interviewed moth-
ers who had children receiving home
PD and found that the mothers often
worried about the possibility of illness
or death, and became very vigilant in
monitoring their childs health. These
mothers also checked on their chil-
dren frequently at night and described
fatigue and frustration. In addition, the
mothers found that friends and family
members were less likely to visit,
which led to social isolation.
By examining both the quantitative
and qualitative studies, one gets the
sense that having a child with kidney
failure is incredibly stressful.
Brownbridge and Fielding (1994)
found that poor adjustment to dialysis
was associated with decreased adher-
ence to therapy, which could affect the
childs outcome. Furth, Hwang, Neu,
Fivush, and Powe (2003) studied the
likelihood of nephrologists referring a
patient for transplant. They created
scenarios of children and families with
varying characteristics, and families
who were less adherent to therapy and
were less likely to be referred for trans-
plant. Therefore, there may be rela-
tionships among adjustment, adher-
ence, and the likelihood of transplant.
Thus, nephrology nurses must become
more concerned with assessing how
families are adjusting to the burden of
dialysis as a way to promote better out-
comes in children receiving dialysis.
Discussion: Gaps in the Literature
and Areas For Future Research
Despite several studies examining
adjustment in families of children with
kidney failure, many gaps remain that
can guide future research priorities in
this area. The majority of the studies
have focused primarily on the experi-
ences of mothers as caregivers, leaving
the experiences of fathers relatively
unexplored. The literature has not
described the amount of caregiving
that fathers provide to their children
with kidney failure, nor have issues
relating to adjustment been described.
Although mothers have traditionally
NEPHROLOGY NURSING JOURNAL March-April 2008 Vol. 35, No. 2
been the primary caregivers in
American society, fathers may play an
increasing role in modern society. For
example, fathers of children who have
type 1 diabetes described a desire to
learn about the care and monitoring of
their child and approached caregiving
as a partnership with their wives
(Sullivan-Boyal, Rosenberg, & Bayard,
2006). It is also likely that fathers have
different issues than mothers related to
their childs kidney failure, and this
issue deserves further study.
Studies comparing adjustment
related to where the child receives dial-
ysis (home versus incenter) have yield-
ed conflicting results. A better under-
standing of the process of adjustment
in these two sites of care might help
clinicians guide families in choosing
the best modality for their child.
Measuring the concept of adjust-
ment remains a challenge. There is
currently no uniform instrument that
can be used to measure adjustment,
and the proxy measures of stress, anx-
iety, and depression may not fully cap-
ture all the elements related to how
families are adjusting to having a child
with kidney failure. Although instru-
ment development is labor intensive,
developing an instrument to measure
the concept of adjustment would pro-
vide for more consistent comparisons
across studies and would strengthen
the design of longitudinal studies. Such
an instrument may also have use in the
clinical setting and could allow clini-
cians to have an objective assessment
of how families are adjusting to the
burden of dialysis over time. Families
who are adjusting poorly could be
identified and interventions could then
be implemented. In their work to
develop a health-related quality of life
instrument specific to the pediatric kid-
ney failure population, Goldstein et al.
(2006) discuss the importance of creat-
ing instruments that measure the
unique aspects of pediatric kidney fail-
ure. Applying instruments that were
designed for a broader population
misses many of the burdens and issues
that are exclusive to children and fam-
ilies with kidney failure.
Finally, the majority of studies
reviewed have involved families out-
side the United States, including the
UK, Germany, Taiwan, and Canada.
Only one study (Watson, 1997)
enrolled families in the U.S. (14 out of
38 families, with the remainder of fam-
ilies being from the United Kingdom).
Thus, the experience of how families
in the U.S. adjust to having a child with
kidney failure has not been well
described in the published literature.
As a result, there may be cultural and
contextual issues that affect how fami-
lies in other countries adjust to having
a child with kidney failure. Because the
population and sociodemographic
profile of children with kidney failure
varies around the world, it is important
to study the process of adjustment in
families living in the U.S. as well.
Implications for Nursing Practice
Nurses and physicians alike often
struggle when helping families choose
the best treatment modality for their
child with kidney failure. The assump-
tion is often made that since home-
based therapies (HHD, CAPD, and
automated PD) demand greater
degrees of caregiving from the parents,
only certain families are likely to suc-
ceed with these therapies. Therefore,
clinicians may guide families to either
home-based therapies or incenter ther-
apies based upon this subjective assess-
ment of how the family is likely to
adjust and cope with providing care at
home. If we better understood the
process of how families adjust and
could measure that process, we would
be better equipped to help families
make the best choice regarding treat-
ment modality.
Adjustment is defined as the ability
to successfully adapt to a new situation
or challenge. Since poor adjustment to
dialysis is associated with decreased
adherence to treatment (Brownbridge
& Fielding, 1994), there is a potential
for adjustment to affect the overall out-
come of treatment and referral for
transplant. Therefore, it is imperative
for clinicians to pay more attention to
whether families are successfully
adjusting to the challenges of the dis-
ease. If a tool for measuring adjust-
ment existed, we could also measure
161
How Do Families Adjust to Having a Child with Chronic Kidney Failure? A Systematic Review
families adjustment over time and
begin more intensive interventions
and support for those families who are
adjusting poorly and perhaps improve
outcomes.
By examining studies of families
who have children with other chronic
diseases, it is likely that fathers are now
more involved in the care of their
chronically ill children than they were
when most of the studies reviewed
were conducted. Although it is not
well described in the literature, fathers
may now be more involved in the care
of their children with kidney failure
than they used to be, and may share
caretaking duties with their spouses.
The experiences of these fathers needs
to be further studied in order to devel-
op interventions that address the needs
of both caregivers.
Conclusion
A review of studies describing how
families adjust to having a child with
kidney failure shows that high levels of
stress, depression, and anxiety are
common among parents. There are
conflicting findings from studies com-
paring home-based therapies to incen-
ter therapies, and some evidence that
families with low SES have more diffi-
culty adjusting than families with high
SES. In addition, families describe the
burden of kidney failure as being rid-
dled with uncertainty, social isolation,
and increased caretaking duties.
Although the experience of how
families adjust to having a child with
kidney failure has been described in
the literature, many gaps remain.
Opportunities for further research
include studying the experience of
fathers, exploring the differences in
home-based versus incenter therapies,
developing a tool to measure adjust-
ment, and comparing the experiences
of U.S. families to those already
described in other countries.
In order to provide holistic care to
the entire family, we must pay attention
to more than just labs and physiologic
measurements. Interventions need to
be developed for families who are
adjusting poorly to the treatment regi-
men. Attention to how a family adjusts
162
to caring for their child with kidney fail-
ure, coupled with improvements in
medical treatment, could ultimately
improve long-term outcomes in this
population.
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