Family-Centered Empowerment in Caring Children with Leukemia

Yuni Sufyanti Arief

, Nursalam

, I Dewa Gede Ugrasena

and Shrimarti Rukmini Devy

Faculty of Nursing, Universitas Airlangga, Kampus C Mulyorejo, Surabaya, Indonesia

Faculty of Medicine, Universitas Airlangga, Kampus C Mulyorejo, Surabaya, Indonesia

Faculty of Public Health, Universitas Airlangga, Kampus C Mulyorejo, Surabaya, Indonesia

Keywords: Family Empowerment, Family’s Ability, Leukemia.

Abstract: Families of children with chronic illness often feel helpless in meeting their child's health care needs and they

are faced with demands, challenges, and emotional and cognitive problems. Powerlessness experienced by

the family affects the ability of families to provide care for their children. This study aims to analyze the

influence of family empowerment on the family’s ability to care for children with leukemia. An explanatory

survey research design is used with a population of 140 families with children suffering from leukemia in

Surabaya. Independent and dependent variables in this research are the family-centered empowerment model

and the family’s ability to care for children with leukemia, respectively. The results of this study indicated

that the influence of family centered empowerment on a family’s ability to care for children with leukemia is

equal to T = 3.9159. The application of family-centered empowerment, based on the improvement of family

filial value, will affect the family's ability to care for children with leukemia. More research is needed on such

family-centered empowerment models. Factors that affect family empowerment in caring for children

leukemia can be considered when providing nursing intervention, especially nurses empowering parents

caring for children with leukemia.

1 BACKGROUND

Child with chronic illnesses, such as leukemia, grow

and develop in a unique family and cultural

environment with many variations. Meeting the

health needs of children with chronic illnesses and

sustaining family life are two major challenges faced

by families (Deatrick & Knafl, 1990; Dunst, 2011;

Wuest & Stern, 1991).

Families of children with chronic health

conditions often feel helpless in meeting their child's

healthcare needs and sustaining family life (Popp,

Conway, & Pantaleao, 2015). Based on the results of

interviews with mothers whose children were treated

for leukemia, it is clear that much daily healthcare

advice is time-consuming, unpleasant, and even

burdensome. Research into the quality of parental

care in the pediatric ward at Soetomo Hospital

indicates that 50% of parents make insufficient effort

to stimulate the development of their children; parents

rarely play with their children and they choose games

that are not in accordance with the child’s

developmental needs (Rachmawati, Ranuh, & Arief,

2016b).

Family empowerment is an intervention that

nurses can use to help families (Wright & Leahey,

2000). These interactive interventions are designed to

help the family through a process of empowerment,

consisting of several stages that can increase trust and

family decision making when working with health

professionals (Johansson, 2006). Activities are based

on assumptions that everyone has the power, ability,

and capacity to grow and become more competent.

Family empowerment is influenced by several

factors, such as demands of care, family factors,

patient factors, and healthcare factors, in this case, the

nurse (Jones, Winslow, Lee, Burns, & Zhang, 2011).

The constituent attributes of family empowerment

can be assessed from self-efficacy, motivation,

acceptance of threats, responsibility, respect, and

care. The expected outcomes for families with such

empowerment are to demonstrate the ability to

negotiate with health professionals, minimizing the

effects of chronic conditions on children and siblings,

rearranging family roles and responsibilities,

satisfying child healthcare needs, and reducing the

need to use healthcare and related costs (Chiu, Wei,

Lee, Choovanichvong, & Wong, 2013). Integrated

576

Arief, Y., Nursalam, ., Ugrasena, I. and Devy, S.

Family-Centered Empowerment in Caring Children with Leukemia.

DOI: 10.5220/0008328905760579

In Proceedings of the 9th International Nursing Conference (INC 2018), pages 576-579

ISBN: 978-989-758-336-0

and holistic cancer prevention should involve all the

components of the family because the needs of

pediatric patients with cancer are complex; the need

to be pain-free, the need for attention, and the need

for psychological support (Elcigil & Conk, 2010). To

help people with cancer thoroughly takes serious

effort and the family’s role is very important.

Therefore, it is important to determine whether the

Family Centered Empowerment Model can improve

the family's ability to treat children with leukemia.

2 METHODS

An explanatory survey design was used for this

research. An explanation is a way of exploring new

things and reporting the relationship between

different aspects of a phenomenon. This was then

followed by a descriptive study to gain knowledge of

the topic and finally, the research findings were

explained (Rowley, 2009). Due to the data retrieval

time, a cross-sectional design was used, with which

the cause and effect of variables were studied and

measured at the same time; all measured variables

form latent variables. The first phase of this study

explored the gap between the findings/facts with

theories relating to factors that can realize family-

centered empowerment. At this stage, factors that

could affect family-centered empowerment were

explored, comprising family factors, factors of

patients, and factors of nurses. The samples in this

study were 140 respondents from families who had

children suffering from leukemia in Surabaya. A

consecutive method was used for the sampling

technique based on inclusion criteria. To discover

families’ ability to care for children with leukemia in

this study, the instruments used were: the Health

Status Questionnaire (HSQ-12), Personal Growth

Initiative Scales (PGIS), and the Spiritual Well-being

Scale (SWBS). This research has obtained the

approval of ethical conduct from the Soetomo

Hospital's ethical committee of Surabaya with the

reference number 385/Panke.KKE/V/2017.

3 RESULTS

In this research, it was determined that there is an

influence of the family-centered empowerment

model equal to T: 3.91. The value is greater than the

standard t value of 1.96, meaning centered family

empowerment in caring for children with leukemia

has a significant impact. Indicators of family-centered

empowerment are family filial values, comprising of

responsibility, respect, and care. While dimensions of

a family’s ability consist of perceived health, personal

growth, and existential well-being. For each

indicator, it is clear that most family-centered

empowerment is in the moderate category.

Table 2 indicates that the family’s ability needs to

comprise of perceived health, personal growth, and

existential well-being. Most of the indicators that

exist in the family’s ability to care for children with

leukemia are in the moderate category.

Table 1: Characteristic indicators of family-centered

empowerment in the Pediatric Ward RSUD, Dr Soetomo,

Surabaya, 2017.

Family-centered

empowerment

category N %

Indicator

Range

Responsibility

< 15,48 low 21 15.0

15,48 < X

< 22,35

moderate 96 68.6

> 22,35 high 23 16.4

Respect

< 15,78 low 12 8.6

15,78 < X

< 22,11

moderate 111 79.3

> 22,11 high 17 12.1

Care

< 26,24 low 25 17.9

26,24 < X

< 34,21

moderate 93 66.4

> 34,21 high 22 15.7

Table 2: Characteristic family’s ability in caring for

children with leukemia in the Pediatric Ward RSUD, Dr

Soetomo, Surabaya, 2017.

Family’s

abilit

range

category

N %

Indicator

Perceived

Health

< 36,66 low 23 16.4

36,66 < X <

46,82

moderate 103 73.6

> 46,82 high 23 16.4

Personal

Growth

< 28,04 low 20 14.3

28,04 < X <

38,75

moderate 101 72.1

> 38,75 high 19 13.6

Existential

Well-

Being

< 34,14 low 24 17.1

34,14 < X <

52,07

moderate 101 72.1

> 52,07 high 15 10.7

Family-Centered Empowerment in Caring Children with Leukemia

577

4 DISCUSSION

Family-centered empowerment influencing a

family’s ability to care for a child with leukemia

comprises of responsibility, respect, and care (Jones

et al., 2011). In this research, it was determined that

the mean indicator of family-centered empowerment

is moderate. Family-centered empowerment is

fostered by developing basic family values consisting

of responsibility, respect, and care. This is supported

by the level of family education mainly in the high

school category (73.4%). Pradono (2013) explains

that higher levels of an individual’s education

provides mature understanding to enable the

individual to choose or decide something. The role of

family is very important to the family's empowerment

in caring for children with leukemia. The higher the

motivation, the more empowered families feel in

providing that care.

Indicators of a family’s ability to care for a child with

leukemia comprises of perceived health, personal

growth, and existential well-being. These three

indicators are positive care outcomes expected in

families treating childhood leukemia. Jones et al.

(2011) explains that to cultivate a good family

experience in caring for sick family members, there is

a need to increase existential well-being, personal

growth, and the family’s well-being in terms of both

physical and mental health. A family’s ability to care

for a child with leukemia can be enhanced through

family empowerment (Rachmawati, Ranuh, & Arief,

2016a).

Empowerment embodies various outcomes and

well-being and is a necessary condition but is not the

main thing. Zimmerman (2000) defines a process

whereby people who have been denied the ability to

make choices acquire those abilities.

The family provides an assessment of how the health

worker, in this case nurses, provides strength,

facilitates, and provides support to the family in

treating childhood leukemia (Friedman & Marylin,

2003). Families who have received information from

health workers are expected to have good knowledge

in healthcare, so they can form a strong responsibility

and commitment with the patient to achieve the care

goals (American Academy of Pediatrics [AAP],

2003, 2012).

Increased family-based health promotes improved

family strength and ability to use coping mechanisms;

the role of nurses is to encourage families to provide

support in child healthcare and encourage

cooperation between nurses and families (Newton,

2007). The role of the family is very important in the

stages of health care, from stages of health promotion,

prevention, treatment, to rehabilitation (Friedman &

Marylin, 2010).

Family empowerment includes a capacity

building paradigm (Dunst, 2011) that emphasizes

family strength and focuses on family units, not just

sick children. Family empowerment provides an

opportunity for families to better understand the

reality of the family and acquire knowledge and skills

to make wise decisions relating to children and

families: getting to know the problems/needs,

managing childcare effectively, and confidently

mastering family challenges (Dunst, 2011).

5 CONCLUSIONS

Empowerment is an ongoing process that develops

people's ability and independence and improves their

standard of living; this can only be achieved by

generating their empowerment, to improve their lives

using their own strength (Fotoukian, Mohammadi

Shahboulaghi, Fallahi Khoshknab, & Mohammadi,

2014). Factors affecting family empowerment should

be considered when providing empowerment

interventions, because these factors are a determinant

of the success of nursing interventions providing

treatment in children with leukemia. Further research

is needed specifically to observe other influential

variables, such as empowerment intervention by

applying the factors influencing the process of

empowerment to families.

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Table 3: Influence of family-centered empowerment on

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Relationship between

variables

Original

Sample

(

)

T Statistics

(|O/STERR|)

Family-centered

Empowerment Î

famil

’s abilit

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