SELF MANAGEMENT PROGRAMS ON THE QUALITY

OF LIFE OF CHILDREN AND ADOLESCENTS WITH

CHRONIC KIDNEY DISEASE: A SYSTEMATIC REVIEW
Syarifah Aini Tanjung*1), Nur Agustini2), Dessie Wanda3)
1,2,3
Universitas Indonesia
* Corresponding Email: [email protected]

Vol.17 No.2 | June, 2023

Abstract
Submit :
Introduction : Diagnosis of disease Serious like disease kidney chronic disease
03/04/2023
(CKD) have implications in many field life children and their families , and can
dramatically affect quality their life . One program to improve quality life is by
Accept :
involving self- management monitoring conditions , compliance to treatment and
04/06/2023
response to sustain quality live . Method : review systematically , started with
formulate PICO: In patients children and adolescents , whether program
Publish :
management self compared to with intervention standard can influence quality live .
05/06/2023
Furthermore do search literature from databases ProQuest, ScienceDirect, Scopus,
EBSCOhost, PubMed, ClinicalKey , ClinicalKey Nursing, Sage Journal and Google
Scholar . Criteria inclusion is related research articles self-management child with
disease kidney chronic , not review article , in English, research conducted on
children and adolescents , and there are version full text . Results : Total articles
obtained beginning from the entire database is totaled 106,740 articles , once done
screening according to criteria inclusion , obtained 9 articles with various type
research design . Eight from nine studies show There is the effect of self-
management programs on pediatric and adolescent patients with CKD. Self-
management program in adolescents with disease kidney Chronic can be education
or training , peer support or group base care as well as preparation in terms of
transition service health to services mature . Conclusion: Self-management program
for children and adolescents effectiveness can improve results health , slow down
development disease and delaying replacement therapy kidneys ( dialysis ), however
self-management is complex and requires support multidisciplinary .

Keywords: Children And Adolescents , Quality Life , PGK, Self-Management.

© 2022 Lembaga Layanan Pendidikan Tinggi Wilayah X. This is an open access article under the CC
Attribution 4.0 license (https://creativecommons.org/licenses/by/4.0/).
http://publikasi.lldikti10.id/index.php/jit DOI : https://doi.org/10.22216/jit.v17i2 PAGE : 301-314

ISSN :1979-9292 / 2460-5611 ©2023 Lembaga Layanan Pendidikan Tinggi Wilayah X

This is an open access article under the CC Attribution 4.0 license (https://creativecommons.org/licenses/by/4.0/).
JIT is Sinta 3 Journal (https://sinta3.kemdikbud.go.id/journals/profile/2143) accredited by Ministry of Research &
Technology, Republic Indonesia
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INTRODUCTION used to describe QoL, however based on

statement WHO , QoL can be defined as
Disease kidney chronic disease (CKD)
perception individual about their position
is damage kidney irreversible anatomical
in life in context culture and system the
or functional (Kher et al., 2017).
values in which they live , and in relation
According to criteria Kidney Disease
to their (Dotis et al., 2016)goals ,
Outcomes Quality Initiative (KDOQI),
expectations , standards and concerns .
definition disease kidney chronic is
damage kidney for 3 months or more, Children with CRF face Lots challenge
defined as abnormality structural or , incl often hospitalized , procedure painful
functional kidney , with or without medicals , irregular school absences , and
impairment rate glomerular filtration , restrictions activity . It can have impact
which manifests as abnormality emotional and psychosocial in children ,
pathological marker damage kidney , incl encouraging interest in thinking about
abnormality composition blood or urine , quality live , which is increasingly known
or abnormalities in tests imaging rate less as results main in settings clinical and
glomerular filtration > 60 mL/ min /1.73 population studies children with CRF.
m2 for 3 months or more, with or without Besides that 's youth is a period of
damage kidney (Kher et al., 2017). PGK is transition important going to
syndrome clinically characterized by loss empowerment, outreach , and development
function kidney gradually and irreversibly personality . Just don't survive sufficient ,
which can further develop become disease and quality endure life has appear as focus
end -stage or failing kidney kidney chronic fundamental from maintenance
(CKD) (Amanullah et al., 2022). If CKD comprehensive health (Clavé et al., 2019).
develops become fail kidney , children Based on result research conducted by
need dialysis even to a transplant kidney Rafly, (2017)at Home Sick Cipto
(Aier et al., 2022). Characteristics Mangunkusumo , more from half PGK
characteristic of children with CKD are: children according parents (54.5%) and
etiology or complications cardiovascular , children (56.3%) have disturbance quality
which not only affects patient's health life especially in function school and
during childhood , but it also impacts the function emotion . Old diagnosis> 60
child when become an adult (Becherucci et months , type sex women , and levels
al., 2016). Children who live dialysis own education medium is related factors with
a number of taboo food . Remember quality life PGK child . Matter this is the
breadth CKD comorbidities in children same as research conducted by (Sani et
and challenges treatment lifetime life , al., (2022)at Home Sick General Dr.
unique psychological and social problems Center Hasan Sadikin Bandung, obtained
can occur (Aier et al., 2022). that as much as 60% of children with
PGK at RSUP Dr. Hasan Sadikin Bandung
Disease diagnosis Serious like PGK
has quality bad life based on self-report
has implications in many field life children
with an average total score of 56.85 ±
and their families , and can dramatically
7.53. Based on parent-report , quality life
affect quality their lives which is called the
child with PGK included in bad category
Quality of Life (QoL). Many terms are
with an average total score of 69.43 ±

LLDIKTI Wilayah X 302

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17.07. Lowest total score present in the management has done by Emiliana et al.,
patient child with existing PGK enter (2019) in child and adolescent respondents
degrees end (PGK 5). PGK is condition with Type 1 DM, obtained results that
period long ( long term condition ) which delivery education self-management in
is not can healed However can managed animated video form can increase self-
with treatment and care or therapy , where management and compliance child in diet
self-management is component important setting , action physical education ,
from maintenance health (Nightingale et medication , stress management and blood
al., 2022). Self-management is ability For sugar control . Study about program self-
arrange life with disease chronic , which management in children and adolescents
involves monitoring conditions , with condition chronic has carried out in
compliance to treatment and response For several countries. Remember importance
maintain quality life (Barlow et al. 2002 in enhancement self-management patient
Havas et al., 2016). This covers a number children and youth with PGK then writer
of aspect like obedience treatment , interested For do more review deep with
monitoring symptoms , nutrition , activity do systematic purposeful review For
physique , and improvement Skills discuss strategy intervention self-
maintenance self . Self-management No management to enhancement quality live
only increase obedience patient to plan in patients children and youth with PGK.
treatment they but also helps in
development Skills coping they For their
problem facing (Lozano et al., 2018). RESEARCH METHODS
Self-management of disease chronic is Identify on stage beginning determine
dynamic , interactive and iterative question study with use PICO formula (
processes that require patient For develop Population , Intervention , Comparison ,
strategy multidimensional For overcome and Outcomes ). Formulation problem
their problem experience in life daily with PICO method as following : the
(Miller et al., 2015). According to Nguyen specified population is patient children and
et al., (2019) program self-management youth with disease kidney chronic ,
very useful stage beginning disease interventions applied form program
kidney chronic , which contributes For management self , comparison or
slow down development disease , improve intervention the comparison is
results health , and reduce system load intervention standard or maintenance
maintenance health . Various study about normal , meanwhile expected outcomes is
program patient self- management mature increase quality live , so formula question
with disease kidney chronic has Lots done clinical is ―In children and adolescents
and proven effective in Indonesia. Wrong with disease kidney chronic , is it?
only one like research conducted by program management self compared to
Astuti et al., (2017) obtained There is with intervention standard can increase
influence self management to ability quality alive ?. Writing article This done
psychosocial adjustments patient with on month October 2022 with search
disease kidney chronic . In children and systematic literature use a number of
adolescents , study about education self- databases . Process determination literature

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based on criteria inclusion that is article whole component based assessment JBI
speak English , subject study is children assessment criteria.
and youth , and articles rise 2012-2022 Amount articles used in the study In
years . Criteria defined exclusions is this systematic study , there are 9 articles
articles that do not available version text with a range of years of publication from
complete , and articles in the form review 2012 to 2022. The articles reviewed own
systematic. design Randomized Controlled Trial
After PICO formulation , step (Huang et al., 2022; Sezer et al., 2021),
furthermore is look for mesh headings mixed method (Sattoe et al., 2013), cross-
from formula question the PICO . Then do sectional (Fenton et al., 2015; Zhong et al.,
search using databases. Databases used is 2020), cohort study (Ferris et al., 2015;
ProQuest, ScienceDirect, Scopus, Johns et al., 2020)and studies qualitative
EBSCOhost, PubMed, Clinical Key, (Nightingale et al., 2014, 2022). The total
Clinical Key Nursing, Sage Journal and sample in this study is as many as 364
Google Scholar . Keywords search used people consisting consists from divided
is self-management programs AND quality children and adolescents become group
of life AND children and adolescents with intervention and control groups as well as
chronic kidney disease. Besides use online with the intervention different other . The
database , researchers also do hand- results of the review can be seen in the
searched from the reference list Articles table below .
are included to add article used . Total
N Author Objectiv Researc Sample Research
articles found is 106740 , next done o , year of e h result
screening based on criteria inclusion , publica design
tion ,
screening based on title and abstract , then country
by downloading full text and read it until a of
researc
total of 11 journal articles were obtained , h
there were 2 similar articles ( duplicates )
then issued . Total articles used and 1 To test RCTs A total Interventi
(Huang effect a of 49 on
committed analysis as many as 9 articles . et al., guideboo teenager education
The entire selection process study can be 2022) k patient s aged patient
self 11-17 significant
described in the figure the following education years ly
USA to dengan independe
prisms : improve stadium nt
knowledg CKD increase
Quality research articles used done e / ≥3. readiness
using the Joanna Briggs Institute (JBI) managem managem
ent self Kel. ent self
format guide on each articles that have disease intervent participant
selected . Whole article evaluation results kidney ion 31 , advocacy
chronic , youth self and
use JBI's critical appraisal tools stated readiness awareness
worthy of being included in this study . transition Ex . from time
maintena control to time .
Ninth articles with randomized controlled nce of 18
trial , mixed method , cross-sectional , health , adolesce
advocacy nts
cohort and study types qualitative fulfil self and
skills

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attention ent child = 62) being

among young more
adolescen (16-25 responsibl
ts with years) e answer
disease with the and open
kidney disease towards
chronic . kidney others,
stage end and dare
2 To test Studies Teenage presence . defend
effects of cohort rs 10 teens in yourself .
(Johns
et al., the in people session
2020) Group- teenager group bad 5 evaluate cross Teenage Findings
Based s Adult 50 , though ( Zhong connectio sectiona rs 21 show that
Care And people score self- et al., n l people literacy
USA model in RCTs in reported knowledg health
2020)
adolescen adults satisfactio e Mature relate
ts and n is high . nutrition young positive
adults There is USA and 38 with
with the change in literacy people Skills
disease average health managem
kidney pressure with ent self
chronic blood take readiness and
(CKD) care 24 transition communic
hour road maintena ation with
. nce provider
health service
3 evaluate RCTs Ex . There are and
effect of intervent significant managem
( Sezer
managem ion of 20 and ent self in
et al.,
ent adolesce positive adolescen
2021)
programs nts changes in ts and
develope all items young
Turkey d self Control evaluation adults
based on group of managem with
managem 20 ent self disease
ent teenager after kidney
theory s training chronic
self managem (CKD) or
individua ent hypertens
ls and yourself in ion .
families the group
to help interventi 6 Conceptu Cross- 41 These
adolescen on . (Fenton alize sectiona teenager findings
ts with et al., How l s ages show that
disease 2015) factor 13 - 18 factor risk
kidney risk years related
chronic related disease
in USA disease ( Possible
acquiring severity not
competen disease , enough
ce in age at important
managem diagnosis to predict
ent their , and readiness
illness . burden transition
disease ) compared
4 explore mixed Qualitati Trust self and to factor
effect methods ve (n = participant factors resilience
( Sattoe
from 19) increase , resilience like
et al.,
peer-to- knowledg psychoso cohesion
2013)
peer Quantita e related cial ( family .
support tive ( disease efficacy
Dutch on self- retrospe more , feel coping ,
managem ctive ) (n capable of cohesion
family ,

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and English and chronic , related to

quality health and ethnograp
alive ) professio hy
nals to 28 focused .
7 Gather cohort 21 STARx children professi Rewards
informati adolesce develop with onals included
(Ferris
on about nts with sensitive , condition health ability to
et al.,
Skills CKD with older chronic get richer
2015)
managem patients understan
ent self scoring ding of
USA and significant phenomen
transition ly higher on
maintena at nearly complex
nce every each other
health , factor confession
through compared skills that
report to younger occur
self , in patients . during
populatio parent /
n wide profession
adolescen al
ts and interaction
young maintenan
adults ce health .
with
condition Table 1. Summary results review literature
chronic .

8 explore Studies 16 Family RESULTS AND DISCUSSION

(Nightin How qualitati teenager will get
gale et teenager ve s ages benefit Readiness Child and Youth Self-
al., with 13-17 from
PGK years support Management. Four article study discuss
2022)
took not with profession about readiness children and youth in
quite CKD, al health
English enough in term receive a purposeful self -management
answer 13 integratin program For increase readiness child in
For people g time
manage old , and assumptio undergo maintenance transition from child
condition n not quite to mature . Type research obtained that is
them and 20 enough
the role professi answer One article with type study cross sectional
of the onals managem , one article with type study cohort study
health health ent
professio yourself and two articles with type study studies
nal by getting qualitative . Factors that play a role that is
during independe
process nce in factor resilience psychosocial ( efficacy
this . their lives coping , cohesion family , and quality live
and
focuses on ) to readiness transition (Fenton et al.,
youth ' 2015). Besides it is also required support
doing '
managem person parents and health professionals
ent self . (Nightingale et al., 2014). Teenager with
9 explore Studies parents These
PGK also took not quite enough answer
(Nightin interactio ethnogr of 6 findings For manage condition them and the role of
gale et ns aphy children highlight the health professional during process This
al., between with the rewards
2014) people disease and (Nightingale et al., 2022). Studies
parents kidney challenges conducted by Ferris et al., (2015) test

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development , reliability , and structure namely : (1) kidney and its function , (2)
factor tool For measure readiness management CKD treatment , (3) nutrition
transition maintenance health and self- , diet, and habits style life with PGK, (4)
management . Tool This can useful for readiness transition service health , self-
provider service health For evaluate management ( incl understanding
readiness transition patient them and skills insurance and transfer to adult- focused
management self in a multidimensional providers ) (5 ) problem reproduction
and appropriate way age which, in turn , related to CKD and compliance treatment ;
should be help provider service health For and (6) interact in system service health .
adjust and guide possible intervention Every session 15 minutes long . Literacy
leads to results more health ok . health defined as ability For acquiring ,
processing , and understanding
Self-Management Program Through
information and services health base For
Education. Two articles explain study
make decision health . At least One from
about self-management programs through
three teenager own literacy low health and
educational media . Type research
children with literacy low generally own
obtained that is One article with type RCT
behavior / outcome more health bad . in
research and one article with type study
patients nephrology children and youth at
cross sectional . Research conducted by
UNC Chapel Hill, literacy health and
Huang et al., (2022) form drafting A book
knowledge nutrition associated with
guide education patient independent For
readiness transition service health ( health
increase knowledge / self-management
care transition ) and/ or management
disease kidney chronic , readiness
themselves , especially in children
transition maintenance health , advocacy
teenager . In studies this , skill
self and skills attention among teenager
management self found correlated with
with disease kidney chronic . Whereas
knowledge related nutrition with disease .
Zhong et al., (2020) researching about
Findings This show that knowledge
education and literacy health For readiness
nutrition can function as a target for
transition maintenance health and self-
intervention For increase readiness
management in adolescents and adults
transition service health when patient
young with disease kidney chronic (CKD)
entered young adulthood and transferred to
or hypertension . Intervention independent
a people - focused provider mature .
education self-management and transition
"ALL YOU NEED IS LOVE" in teenagers
with PGK is intervention independent
Training Based Self-Management
form education patient during six planned
Group
week For increase knowledge or self-
management disease kidney chronic , Three article study discuss about training
readiness transition maintenance health , management self related maintenance
advocacy self and skills patient . based group or peer to peer support . Type
educational programme self-management research obtained that is One article with
This covers education readiness and self- type study cohort study , one article with
management related transition service type RCT research , and one article with
arranged health in six module weekly type study mixed methods .Johns et al.,

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(2020) do studies related intervention DISCUSSION

maintenance based group ( for 6 months ) Self-management on illness chronic is
versus treatment common in adolescents dynamic , interactive and iterative
and adults . Patients were randomly processes required by patient For develop
assigned For maintenance based group strategy multidimensional For overcome
requested For attended 6 visits clinic their problem experience in life everyday .
monthly . All session started with activity Patient self- management chronic is matter
maintenance self , incl measurement important in management disease .
pressure blood and other vital signs ( incl Optimal self-management aims For control
heavy body ). on each session , topic factor risk and increase management
certain discussed and their content sourced disease . Patient No Again become
from material existing education from recipient passive education , however they
Program Education Disease Kidney are also active in determine choice health
National . Participant motivated For each them . Intervention self-management is a
other share about behavior compliance and strategy for help patient develop skills and
compiling strategy with provider services strategies for increase self-management
and participants other For apply habit condition chronic. Self -management is
healthy . Studies conducted by Sezer et very effective on stage beginning disease
al., (2021) is develop program training kidney chronic , which contributes For
self-management in teenagers based on slow down development disease , improve
Individuals and Families Self - results health , and decrease burden system
Management Theory , which aims For
maintenance health (Nguyen et al., 2019).
optimizing health and welfare teenager Besides That obedience treatment is very
with disease kidney chronic with increase important For slow down development and
management self . Matter This covers a prevention complications (Ferris et al.,
number of aspect like obedience treatment 2017). For teenager with CKD/CKD,
, monitoring symptoms , nutrition , activity adherence treatment play role central in
physique , and improvement Skills
success transition maintenance health
maintenance self . Training group teenager (Health Care Transition) from
during visit follow continue in the clinic maintenance child adult - focused nursing
also works For increase interaction they (Nicholas et al., 2018). From search
with their peers , and allows they For share literature got 5 themes that is education
experience and gain access to support parent child with PGK, education / training
psychosocial . Study related to peers is management self For youth , peer to peer
also carried out by Sattoe et al., (2013) support ( support Friend peers in
Study explore effect from form Specific adolescents ), Compliance treatment
support peer- to -peer on self-management influence readiness transition , readiness
teenager with disease kidney stadium teenager For transition maintenance to
participating end in activity Camp COOL adults ( health care transition ). Parent
that is form camp year in the Netherlands from children with condition chronic
national during One special week For responsible answer For do part big
adolescents and young adults with disease parenting clinical at home . because it ,
kidney stadium end. member team multidisciplinary obliged

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For promote parent learning about gift (Huang et al., 2022; Zhong et al., 2020).
maintenance and monitoring gift Self- management program this is very
maintenance (Swallow et al., 2012). Stages useful Because intervention self-
education can done with method involving management can help slow down
parents in practice together , then next development disease become fail kidney
with exchange knowledge and negotiation (Welch et al., 2015). Different with
role , and deliver education in accordance education standard only focus on self-
need parent (Swallow et al., 2013). Family management tasks medical without notice
involved Because own role important in role or emotional task children and youth
give maintenance to individual with with PGK. Adolescence is period
condition chronic (Kokorelias et al., 2019). transition in which the adolescent
this known with approach Family gradually develop skills and competencies
Centered Care (FCC) which has developed adaptive and functional , and build identity
especially For maintenance child , for preparing self they For fulfil roles and
value partnership with member family in expectations public mature (Chulani &
handle health medical and psychosocial Gordon, 2014). Peer support in adolescents
patient (Kokorelias et al., 2019). Because can increase trust self , knowledge related
of the kids with condition chronic can disease more many , feel capable For more
experience disturbance quality life (Bai et responsible answer and open to person
al., 2017). Self-management can increase another , and dare defend self alone . The
ability For arrange life with disease role of friends is combination proactive
chronic , which involves monitoring become supervisor , adviser , and leader
conditions , compliance to treatment and (Sattoe et al., 2013). Each other share
response For maintain quality live (Barlow related resources and experience with
et al. 2002 in Havas et al., 2016). Effective disease or maintenance can function as
self- management increase results health , means important For increase knowledge
slow down development illness and delay and improve support emotional
therapy replacement kidney ( dialysis ), (Kokorelias et al., 2019). Intervention peer
however , management self That complex to peer support form group- based care
and needy support (Havas et al., 2016). performed by Johns et al., (2020) obtained
Self-management programs has Lots that presence teenager in every session not
applied to educational programs disease enough optimum , with only 40 % of 10
chronic , which is designed For postpone participants attended 3 sessions . Lack of
bad function kidney , avoid depression , data for intervention in adolescents with
and improve quality life (Lee et al., 2016). PGK underlining necessity study more
Self-management program is one of them carry on in group this . Transition
is through education that is form drafting maintenance health is process that requires
A book guide education patient preparation as Suite from services focused
independent For increase knowledge / self- on children until mature . Study about
management disease kidney chronic , management self For preparation transition
readiness transition maintenance health , adolescents to care mature with disease
advocacy self and skills attention among kidney chronic has Lots done (Fenton et
teenager with disease kidney chronic al., 2015; Ferris et al., 2015; Zhong et al.,

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2020). Program transition done For management self That complex and needy
increase readiness transition and help support multidisciplinary . In
patient responsible responsible for his implementation exists challenges faced
health . However in implementation exists by children and youth with disease chronic
challenges faced by teenager with disease and caregiver them , in matter transition
chronic and caregiver them , in matter not quite enough answer main For activity
transition not quite enough answer main maintenance health daily from person old
For activity maintenance health daily from to child . Program self-management in
person old to child (Lerch & Thrane, children and adolescents with disease
2019). In management health daily No all kidney chronic can form education or
person old deliver control to teenager . For training , peer support or group base care
teenager with disease chronic disease and also preparation in matter transition
diagnosed in infancy , people old has service health to services mature .
develop knowledge special disease and However so , necessary done study more
assessment symptom youth as a whole . A deep regarding strategies for self-
number of person old disclose doubt For management programs in children and
deliver management disease to teenager adolescents with PGK remembering Not
Because person old No Certain how to yet Lots study about matter this .
transmit it to child they (Lerch & Thrane,
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