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

NEPHROLOGY NURSING JOURNAL March-April 2008 Vol. 35, No. 2 157


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

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How Do Families Adjust to Having a Child with Chronic Kidney Failure? A Systematic Review

the findings related to families and and validity of several of these instru- mothers and fathers adjust to having a
parents. Some of the studies also had ments are not well described in the arti- child with kidney failure. None of the
other findings that did not specifical- cles (Brownbridge & Fielding, 1991; studies describe the amount of care-
ly relate to the topic of review. Brownbridge & Fielding, 1994; giving that the fathers performed.
Fielding & Brownbridge, 1999; Thus, more information about fathers
The Concept of Adjustment Madden et al., 2002; Reynolds et al., roles in caring for their children with
In the studies reviewed, authors 1988). In addition, two researchers kidney failure is needed.
have used the terms adjustment and developed their own questionnaires to One would predict that the site of
adaptation interchangeably, al- assess the impact of the childs illness care (home versus incenter [outpa-
though the terms are not specifically (Watson, 1997) and the tolerability of tient]) would play a role in how fami-
defined or operationalized. In general, the treatment (Reichwald-Klugger et lies adjust to the burden of kidney fail-
adjustment is defined broadly as a al., 1984). The reliability and validity ure, since home therapies require
response to a change in the environ- of these instruments has not been more direct caregiving from parents.
ment that allows an organism to established, and it is not known Studies examining this issue have
become more suitably adapted to that whether the instruments truly meas- yielded conflicting results. Brown-
change (Sharpe & Curran, 2006, p. ure the concept of adjustment. In bridge and Fielding (1991) found that
1153). In other studies, adjustment to addition, the wide variety of instru- parents of children receiving incenter
illness is usually operationalized as a ments used to measure stress, anxiety, HD had increased anxiety and
positive quality of life, well-being, and and depression makes it difficult to depression when compared to parents
increased self-esteem. Therefore, mal- compare findings from these studies. of children receiving home hemodial-
adjustment is usually measured by the ysis (HHD) or continuous ambulatory
presence of depression, anxiety, or Significant Findings peritoneal dialysis (CAPD). However,
stress (Sharpe & Curran, 2006). For When taken as a whole, several Reichwald-Klugger and colleagues
the purpose of this review, adjustment themes emerged from this collection (1984) found that HHD was more
is defined as the ability to successfully of literature. Families with children stressful for parents than incenter HD.
adjust to a new situation or challenge. receiving dialysis reported increased Thus, the relationship between where
disruption in family life and increased children receive dialysis and how their
Measuring Adjustment marital stress, but not increased mari- parents adjust to delivering the thera-
There is no single instrument that tal breakup (Reynolds et al., 1988). As py remains equivocal due to the small
measures adjustment in families who families adjust to having a child with number of studies to date.
have children with kidney failure. The kidney failure, there are increased lev- Low socioeconomic status (SES)
most common instruments used to els of stress, anxiety, and depression in could be a factor that affects how fam-
measure adjustment in parents assess parents (Brownbridge & Fielding, ilies adjust to having a child with kid-
stress, anxiety, or depression. A wide 1991; Brownbridge & Fielding, 1994; ney failure. Brownbridge and Fielding
variety of instruments were used in Tsai et al., 2006; Watson, 1997). Tsai et (1994) found that low SES was associ-
the studies included in this review, al. (2006) specifically compared par- ated with decreased adherence to
including the Leeds scale for the self- ents of children receiving home dialy- therapy. A later study by these authors
assessment of anxiety and depression sis to parents of healthy children. also found that low SES was associat-
(Leeds SAD) (Brownbridge & Fielding, They found that the parents of chil- ed with increased rates of anxiety and
1991; Brownbridge & Fielding, 1994; dren receiving home dialysis had depression in parents (Fielding &
Fielding & Brownbridge, 1999), the increased rates of depression and Brownbridge, 1999). These results
General Health Questionnaire (GHQ- lower quality of life when compared support the idea that families with low
28) (Madden, Hastings, & VantHoff, to parents of healthy children. Since SES may have more difficulty adjust-
2002; Reynolds, Garralda, Jameson, stress, anxiety, and depression are ing to having a child with kidney fail-
& Postlethwaite, 1988), the Coping used to measure adjustment, parents ure. The mechanism behind this rela-
Health Inventory for Parents (CHIP) with increased levels of stress, anxiety, tionship remains unclear, but may be
(Madden et al., 2002), the Social Stress and depression likely have more diffi- related to the increased levels of gen-
and Supports Interview (SSSI) culty adjusting to having a child with eral stress associated with low SES.
(Reynolds et al., 1988), the Taiwanese kidney failure. Qualitative studies describing the
Depression Questionnaire (Tsai, Liu, The majority of studies focus on concept of adjustment are rich with
Tsai, & Chou, 2006), the World Health the caregiving experiences of the detail. The overall burden of dialysis is
Organization Quality of Life BRIEF mother (MacDonald, 1995; Madden stressful, and is characterized by
Taiwan version (Tsai et al., 2006), the et al., 2002; Nicholas, 1999; Tsai et al., themes such as uncertainty
Perceived Stress Scale (PSS10) 2006). The remaining studies do not (MacDonald, 1995), social isolation
(Watson, 1997), and the Hospital separate the responses of the mothers (Middleton, 1996), and increased
Anxiety and Depression Scale and fathers, which makes it impossible caretaking, vigilance, and monitoring
(HADS) (Watson, 1997). Reliability to tell if there are differences in how (Middleton, 1996; Nicholas, 1999;

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


Reichwald-Klugger et al., 1984). been the primary caregivers in side the United States, including the
Elements of stress can be identified in American society, fathers may play an UK, Germany, Taiwan, and Canada.
these qualitative studies. For example, increasing role in modern society. For Only one study (Watson, 1997)
MacDonald (1995) interviewed moth- example, fathers of children who have enrolled families in the U.S. (14 out of
ers who had children receiving home type 1 diabetes described a desire to 38 families, with the remainder of fam-
PD and found that the mothers often learn about the care and monitoring of ilies being from the United Kingdom).
worried about the possibility of illness their child and approached caregiving Thus, the experience of how families
or death, and became very vigilant in as a partnership with their wives in the U.S. adjust to having a child with
monitoring their childs health. These (Sullivan-Boyal, Rosenberg, & Bayard, kidney failure has not been well
mothers also checked on their chil- 2006). It is also likely that fathers have described in the published literature.
dren frequently at night and described different issues than mothers related to As a result, there may be cultural and
fatigue and frustration. In addition, the their childs kidney failure, and this contextual issues that affect how fami-
mothers found that friends and family issue deserves further study. lies in other countries adjust to having
members were less likely to visit, Studies comparing adjustment a child with kidney failure. Because the
which led to social isolation. related to where the child receives dial- population and sociodemographic
By examining both the quantitative ysis (home versus incenter) have yield- profile of children with kidney failure
and qualitative studies, one gets the ed conflicting results. A better under- varies around the world, it is important
sense that having a child with kidney standing of the process of adjustment to study the process of adjustment in
failure is incredibly stressful. in these two sites of care might help families living in the U.S. as well.
Brownbridge and Fielding (1994) clinicians guide families in choosing
found that poor adjustment to dialysis the best modality for their child.
Implications for Nursing Practice
was associated with decreased adher- Measuring the concept of adjust-
ence to therapy, which could affect the ment remains a challenge. There is Nurses and physicians alike often
childs outcome. Furth, Hwang, Neu, currently no uniform instrument that struggle when helping families choose
Fivush, and Powe (2003) studied the can be used to measure adjustment, the best treatment modality for their
likelihood of nephrologists referring a and the proxy measures of stress, anx- child with kidney failure. The assump-
patient for transplant. They created iety, and depression may not fully cap- tion is often made that since home-
scenarios of children and families with ture all the elements related to how based therapies (HHD, CAPD, and
varying characteristics, and families families are adjusting to having a child automated PD) demand greater
who were less adherent to therapy and with kidney failure. Although instru- degrees of caregiving from the parents,
were less likely to be referred for trans- ment development is labor intensive, only certain families are likely to suc-
plant. Therefore, there may be rela- developing an instrument to measure ceed with these therapies. Therefore,
tionships among adjustment, adher- the concept of adjustment would pro- clinicians may guide families to either
ence, and the likelihood of transplant. vide for more consistent comparisons home-based therapies or incenter ther-
Thus, nephrology nurses must become across studies and would strengthen apies based upon this subjective assess-
more concerned with assessing how the design of longitudinal studies. Such ment of how the family is likely to
families are adjusting to the burden of an instrument may also have use in the adjust and cope with providing care at
dialysis as a way to promote better out- clinical setting and could allow clini- home. If we better understood the
comes in children receiving dialysis. cians to have an objective assessment process of how families adjust and
of how families are adjusting to the could measure that process, we would
burden of dialysis over time. Families be better equipped to help families
Discussion: Gaps in the Literature who are adjusting poorly could be make the best choice regarding treat-
and Areas For Future Research identified and interventions could then ment modality.
Despite several studies examining be implemented. In their work to Adjustment is defined as the ability
adjustment in families of children with develop a health-related quality of life to successfully adapt to a new situation
kidney failure, many gaps remain that instrument specific to the pediatric kid- or challenge. Since poor adjustment to
can guide future research priorities in ney failure population, Goldstein et al. dialysis is associated with decreased
this area. The majority of the studies (2006) discuss the importance of creat- adherence to treatment (Brownbridge
have focused primarily on the experi- ing instruments that measure the & Fielding, 1994), there is a potential
ences of mothers as caregivers, leaving unique aspects of pediatric kidney fail- for adjustment to affect the overall out-
the experiences of fathers relatively ure. Applying instruments that were come of treatment and referral for
unexplored. The literature has not designed for a broader population transplant. Therefore, it is imperative
described the amount of caregiving misses many of the burdens and issues for clinicians to pay more attention to
that fathers provide to their children that are exclusive to children and fam- whether families are successfully
with kidney failure, nor have issues ilies with kidney failure. adjusting to the challenges of the dis-
relating to adjustment been described. Finally, the majority of studies ease. If a tool for measuring adjust-
Although mothers have traditionally reviewed have involved families out- ment existed, we could also measure

NEPHROLOGY NURSING JOURNAL March-April 2008 Vol. 35, No. 2 161


How Do Families Adjust to Having a Child with Chronic Kidney Failure? A Systematic Review

families adjustment over time and to caring for their child with kidney fail- Middleton, D. (1996). A discursive analysis
begin more intensive interventions ure, coupled with improvements in of psychosocial issues: Talk in a parent
and support for those families who are medical treatment, could ultimately group for families who have children
adjusting poorly and perhaps improve improve long-term outcomes in this with chronic renal failure. Psychology
and Health, 11, 243-260.
outcomes. population.
Nicholas, D.B. (1999). Meanings of mater-
By examining studies of families nal caregiving: Children with end stage
who have children with other chronic References renal disease. Qualitative Health
diseases, it is likely that fathers are now Brownbridge, G., & Fielding, D.M. (1991). Research, 9, 468-478.
more involved in the care of their Psychosocial adjustment to end-stage Oh, J., Wunsch, R., Turzer, M., Bahner, M.,
chronically ill children than they were renal failure: Comparing haemodialy- Raggi, P., Querfeld, U., et al. (2002).
when most of the studies reviewed sis, continuous ambulatory peritoneal Advanced coronary and carotid arteri-
were conducted. Although it is not dialysis, and transplantation. Pediatric opathy in young adults with childhood-
Nephrology, 5, 612-616. onset chronic renal failure. Circulation,
well described in the literature, fathers
Brownbridge, G., & Fielding, D.M. (1994). 106, 100-105.
may now be more involved in the care Psychosocial adjustment and adher- Reichwald-Klugger, E., Tieben-Heibert, A.,
of their children with kidney failure ence to dialysis treatment regimens. Korn, R., Stein, L., Weck, K., Maiwald,
than they used to be, and may share Pediatric Nephrology, 8, 744-749. G., et al. (1984). Psychosocial adapta-
caretaking duties with their spouses. Darbyshire, P., Oster, C., & Henning, P. tion of children and their parents to
The experiences of these fathers needs (2006). Childrens and young peoples hospital and home hemodialysis. The
to be further studied in order to devel- experiences of chronic renal disease: A International Journal of Pediatric
op interventions that address the needs review of the literature, methodologi- Nephrology, 5, 45-52.
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proposal. Journal of Clinical Nursing, 15, R.A., & Postlethwaite, R.J. (1988). How
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A review of studies describing how ment in children with end-stage renal Sharpe, L., & Curran, L. (2006). Under-
families adjust to having a child with failure. Pediatric Nephrology, 13, 766-770. standing the process of adjustment to
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stress, depression, and anxiety are B.A., & Powe, N.R. (2003). Effects of 1153-1166.
common among parents. There are patient compliance, parental education Shroff, R., Rees, L., Trompeter, R.,
conflicting findings from studies com- and race on nephrologists recommen- Hutchinson, C., & Ledermann, S.
paring home-based therapies to incen- dations for kidney transplantation in (2006). Long-term outcome of chronic
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Flynn, J.T. (2006). Cardiovascular disease in Sullivan-Boyal, S., Rosenberg, R., & Bayard,
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SES. In addition, families describe the Growth Hormone and IGF Research, enting young children with type I dia-
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