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The Adjustment of Nondisabled Adolescent Siblings of Individuals with Autism Spectrum Disorder in the Home Setting

Maria Jesi Q. Agbayani, Patricia Bianca V. Capellan, Ma. Angelica M. Mariano, Abigail V. Miranda, Samantha A. Pizarro, Rose Anne V. Tuplano, Pia Bena Leigh S. Vasquez, Margaret Jane D.R. Yabut, and Kriszelle A. Zaño College of Education, University of Santo Tomas, Manila, Philippines

ABSTRACT

Most studies conducted were focused on the difficulties of having a sibling with Autism Spectrum Disorder. This study concentrated on how the nondisabled sibling adjusted in the home setting. The qualitative research design, phenomenological in nature, explores the lived experiences of nondisabled siblings of individuals with ASD. The themes of this study reflect the ways on how nondisabled siblings adapt to their situation. Individual interviews were conducted which lasted for forty five (45) minutes to one (1) hour and fifteen (15) minutes. The 11 participants’ age ranges from twelve to nineteen (12-19) years old were purposively chosen from different parts of Metro Manila and Rizal through the Autism Society Philippines.

Keywords: Autism Spectrum Disorder, sibling relationship, sibling adjustment

INTRODUCTION

According to Orsmond and Seltzer in 2007, among all human relationships, sibling relationships typically last the longest. Siblings are described as “fellow travelers” through the life cycle (Abrams, 2009). This phenomenon is commonly observed in Asian countries and particularly in the Philippine setting. Carandang (1981) suggested that siblings tend to carry the burden for the family known as, Tagasalo,Theory in addition to this studies of Decenteceo (1997) argued that difficulties experienced by each of the family member is being carried by a single individual who might be silently suffering the Pagdadala” syndrome. In the Philippine setting, Andres (1989) stated that blood is thicker than anything else which highlights the strong bond within each Filipino

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family and the strong concern for family and relatives. Ross and Cuskelly (2006) stated that typical sibling relationships show unique bond, foster development of emotional understanding, self-regulation and sense of belonging through close interaction, role playing, sharing of emotions and experiences. On the contrary, Brewton et al. (2012) opined siblings may also cultivate negative experiences through rivalry, competition for parental attention, and aggressive behavior that may lead to subsequent conduct and/or behavior issues. When looking on the brighter side, families where stress is built in, some special adjustment is needed on the part of the family members and nondisabled siblings have to make sense of their differences. In the Philippine context, the family members cope with a special child depends largely on the family mythology, i.e., their values and belief systems. Their manner of coping is also influenced by their perception of the special child in relation to their own self- image (Carandang, 1987). The family members sought to realize the meaning of the special child‟s presence in its members‟ lives. Moreover, aside from the help and support of the professionals, there is always all-out moral and financial support from the other relatives that in a special way greatly aids the family in coping and dealing with the special child. Studies in the western peninsula have shown that socio-economic status (SES) of the family affects the behavior of an individual, however, Andres (1989) noted that Filipino families have strong peculiar concerns for family members and relatives. This makes Filipino families different among others. Through acceptance and concern, family members disregard problems and look unto its positive side. One of the three impairments of Autism is in limited social interactions which necessitates a significant person to enable him to interact and communicate with others. Nondisabled siblings of individuals with ASD experience more difficulties in their relationships than in families where all are typically developing children. Adjustments done by the nondisabled siblings include management of stressful life events, daily hassles, and available resources (Freidenberg & Lewis, 1993; Thompson, Gustafson, Hamlett, & Spock, 1992, as cited in Davis, 2010).

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Until recently, the positive experiences and outcomes of growing up with a brother or sister with disability have been largely overlooked (Dykens, 2005; Stoneman, 2005, as cited in Davis, 2010). Moreover, recent qualitative studies on the experience of siblings of individuals with ASD not only confirm that these individuals experience stressful life conditions, but also reveal some previously hidden themes and acceptance of the individual with ASD (Benderix, Nordstrom, &Sivberg, 2006; Mascha & Boucher, 2006; Petalas, Hastings, Nash, Dowey, & Reilly, 2009, as cited in Moyson and Roeyers, 2011). Prior studies regarding the adjustment were conducted in Western countries specifically in the United States of America (1998, 2007, 2008, 2011, 2012, 2013), Canada (2002), United Kingdom (2003), Australia (2006) and Belgium (2011). With the few local studies that talk about the experiences of having a sibling with disability (Carandang & Liwag, 1993; Castillo, 1998; Sorongon, 2008; Ticar, 2004), none of which focuses on the adjustment of nondisabled adolescent siblings. With the growing number of ASD cases, there is also an increase on nondisabled siblings who might be carrying the burden for having a sibling with ASD, thus, this study becomes seni qua non in reframing the mindset and future time perspective of various experts and professionals working in the field of Special Education. This phenomenological study was conducted to explore the lived experiences of nondisabled adolescent siblings in their homes. Sibling research should focus on “hearing the voices of the siblings by asking them directly for their perspectives, by attempting to understand their adjustment, and by having them identify areas of needed support” (Meadan, Stoner, & Angell, 2010). The present study adds a significant aspect to include all levels of families‟ socioeconomic status. Findings of this study can serve as anchors in developing sibling support programs in the Philippines. Also, parents want to know what their nondisabled children feel, and their viewpoints of being a sibling to an individual with ASD. Finally, this study aims to provide new meaning of hope to continuously inspire and encourage families, with members who have ASD, to appreciate each family member of their different abilities.

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METHOD

A phenomenological design was used in order to interpret how things were understood by people who live through these experiences, and by those who study them (Embree et al., 1997, as cited in de Guzman et al., 2012)to provide clear concepts of adjustment of nondisabled adolescent siblings to individuals with Autism Spectrum Disorder, it focuses on relating to human experiences (Donalek et al., 2004, as cited in de Guzman et al., 2011). Its goal is to assist the respondents in sharing their experiences towards discovering the truth about the phenomenon (Victoria, 2008, as cited in de Guzman et al., 2011). The purpose of this inquiry was to gather information on a phenomenon that is of interest to the researcher, which involves a significant event or experience in the person‟s life (Corbin & Morse, 2003, as cited in de Guzman et al., 2012). According to Wojnar and Swanson (2007) as cited in de Guzman et al., (2012), the goal of hermeneutic inquiry is to identify the respondents‟ meanings from the blend of the researchers‟ understanding of the phenomenon, respondent- generated information, and data obtained from other sources. Consequently, this entails the researchers to reflect on their own understanding of the concepts to be defined so that the forestructure of understanding of the respondents is freed of any biases and may be more clearly accessed (Benner, 1994, as cited in de Guzman et al., 2012). Qualitative research may provide a deeper and more comprehensive understanding of the experiences of siblings of children with ASD (Moyson & Roeyers, 2011).

Subjects

Patton (2002) argued that in qualitative inquiry sample size depends on what you want to know, what the purpose of the inquiry is, what is at stake, what will be useful, what will be credible, and what can be done with available time and resources, thus, making a rule in sample size will compromise the integrity of research outcome. 11 adolescent individuals were purposively chosen in this study according to the following criteria: (a) 12-19 years old; (b) has a sibling diagnosed with

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ASD; and (c) residing with the sibling with ASD. We recruited participants through the help of Autism Society Philippines. Seven respondents were female (82%) and four were male (18%). The respondents‟ mean age was 14.55 years. Five of them reside in Quezon City; three in Mandaluyong City; one in Caloocan City; one in Manila; and one in Antipolo City. The residence and socio-economic status (SES) of the respondents doesn‟t act as factors that affect the results of the study. 7 of the participants belong to the high income families and 4 from low income earning family. All of them are currently studying in secondary and tertiary levels. Notably, four participants were older than their sibling with ASD; that four participants had no other siblings than their sibling with ASD; that two participants had one other typically developing brother or sister; that two participants had two other typically developing siblings; and that three participants had three other typically developing siblings.

Instrumentation and Data Collection

The first instrument used was the robotfoto, which the researchers devised to determine the following information: name, age, date of birth, gender, place of residence, religion, household and family structure. Its name was derived from a Dutch term that can be defined as a cartographic sketch of the subject (Keltchtermans & Ballet, 2002, as cited in de Guzman, 2009). The respondents were asked to gather the demographic profile of the respondents and to write the results in English. Through unstructured interview, the data were obtained, and thorough discussion was conducted. Open-ended questions were raised to guide researchers regarding the respondent‟s subjective feelings and reactions. Follow-up questions were also raised to clarify vague answers given by the respondents. Each interview lasted for 45 minutes to 1 hour and 15 minutes and was conducted in the most convenient time in order to extract responses in the most natural way. Video and voice recorder were also used throughout the interviews for data analysis. Before the interview, respondents‟ parents were asked to sign a consent form to seek their approval assuring that they permit their child to participate in this research. No identifying information

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was included in the analysis of data, in conformance of prior assurance that information given will be treated with utmost confidentiality.

Mode of Analysis

The data collected from the interview were voice recorded; interview questions were written in English but translated to Tagalog during the interview to guarantee natural responses and eventually transcribed verbatim for the analysis of the text. Through the method of cutting and sorting, important statements including quotes and expressions were identified and clustered into groups with similar meaning. A scrutiny technique, called repetition, was used in categorizing significant key-word statements in which the researchers attached a label to observe the recurring experiences of participants. Ryan and Bernard noted that researchers simply read the text and note words or synonyms that respondents use a lot. Analysis of the data was done by grouping similar statements into themes. The more the same concept occurs in a text, the more likely it is a theme (Ryan & Bernard, 2004). Consequently, four themes emerged that served as the focus of the study.

RESULTS

Four themes emerged from the analysis process. These indicate the way on how the nondisabled siblings were able to adjust being a sibling of an individual with ASD. Each of the participants‟ narrative report is similarly related to each other. They explained how these themes helped them to adjust:

1. Adaptability

2. Support system

3. Centered Relationship on the Sibling with ASD

4. Future-oriented Perspective

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Support System Centered Relationship Adaptability on Sibling ADJUSTMENT with ASD Future- Oriented Perspective
Support
System
Centered
Relationship
Adaptability
on Sibling
ADJUSTMENT
with ASD
Future-
Oriented
Perspective
Figure 1.Four themes of adjustment.

Adaptability

According to Davis (2010), adaptability is an ability to fit into a situation under changed circumstances. Learning to adapt in the new changes on their sibling with ASD helps them to be more comfortable with their siblings. Participants shared various reactions after knowing the condition of their sibling, but all of their answers lead to acceptance of their sibling‟s whole being.

“I accepted him because no matter what happens, he is still my brother and that will not change.” (A, 13 years old)

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“I worried about his future considering that we will have our own family someday, thinking how he will live his life independently.” (K, 17 years old)

“To be honest, I asked, „Why did this happen to our family? Why is my brother acting so differently?‟” (P, 16 years old)

Given their

initial

reactions regarding

the condition of

their

siblings,

it

is

remarkable

to

know

that

all

of

them

exhibited

positive

changes

in

their

relationship.

“We cared for him even more because he needs more attention.” (V, 17 years old)

“At first, he is a burden for me but after I have discovered that there are more serious cases than my sibling‟s, I considered him as a blessing.” (K, 17 years old)

“Sometimes I get annoyed with my brother, but then I realized that it is not good.” (J, 12 years old)

Despite the positive changes, they still encounter some challenges due to the complications of ASD. Majority of the participants answered that they somehow sacrifice, especially when their sibling with ASD showed unusual behavior.

“My brother scribbles something on my bag, notebooks, and other things, each time he is agitated. I just let him to do it because I know that it is part of his condition and I just forgive him.” (A, 13 years old)

Participants deal with their siblings‟ unusual acting out behaviors through verbal means and playful acts:

“Every time she‟s having tantrums, she shouts for hours. Sometimes, I also reprimand her, my voice goes louder but I never attempted to hurt her physically.” (A, 16 years old)

“I tickle him whenever he acts aggressively, it‟s like I‟m playing with him, so that he‟d laugh. He does that when it‟s us who are mad. He does wrong things which we should be mad about but we just laugh about it.” (P, 16 years old)

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Support System

Most families share their difficult experiences with one another. This may contribute towards improving the relationship of the family members. Each of them is a vital source of encouragement that gives hope and confidence in embracing the challenging situations, such as dealing with a sibling with Autism Spectrum Disorder.

Support system is essential in expressing one‟s concern, especially in the part of a nondisabled sibling of an individual with ASD. The participants in our study mostly expressed their concerns to their parents, particularly to their mothers.

“I tell it to my mommy, for example, „Mom, my brother keeps on disturbing our youngest brother.‟ She‟ll be the one to talk to him because he doesn‟t always listen to me.” (V, 17 years old)

Participants mentioned their mother‟s advices toward handling their sibling with ASD:

“Mom said, „You must understand and take good care of him because if we‟re not here anymore, you‟ll be the only one to look after him.‟” (P, 16 years old)

On one hand, participants expressed their concerns to their closest sibling. They open up to them easily, because his or her nondisabled brother or sister is also present, mostly during those difficult circumstances with their sibling who has ASD.

I tell it only to my older sister. There is no need to tell it to other people because my sister is also present and knows about it already.” (J, 14 years old)

On the other hand, some participants in our study mentioned that they go to their friends in the same situation as theirs, because their friends understand what they are going through.

“I tell it to my friends particularly with the same situation as me because I am

closer to them than my family.

I prefer to tell it to them because my parents

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already have many problems, and I don‟t want to add these anymore.” (K, 18 years old)

In consideration of the way the participants described their family, this showed that a good support system reflects positive outlook in their family. The participants in our study said that they are a happy family because of their siblings who have ASD. They said they are able to bond because of family members with ASD.

“Happy, I think. My sibling with ASD is the one giving us happiness in the family.” (A, 13 years old)

“We are kind of chaotic because of our sister, but we are loving and generous family.” (A, 16 years old)

“We are okay as a family. We are bonded and open to each other.” (K, 17 years old)

Centered Relationship on the Sibling with ASD

Individuals with ASD have unusual interests which becomes the focus of “normal” activities for the nondisabled siblings and the whole family. The participants shared that they do these activities because it makes the individual with ASD happy.

“Whenever our eldest brother jumps, I also jump. It was like we were playing together.” (J, 14 years old)

“Usually when my brother requests to go somewhere, he wants every member of the family to come. If they don‟t, he dislikes going.” (V, 17 years old)

There are also activities normally enjoyed by typically developing children that are found to be of the same impact on individuals with ASD. Respondents shared that some activities were found to be enjoyable both for them and their siblings with ASD.

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“I bought a CD with the cover of a hand inside an eye. He liked it then he watched it before I did. So, I just watched with him.” (P, 16 years old)

“I ask him to face the wall and I tickle him, then he keeps on laughing and laughing.” (J, 12 years old)

Participants also mentioned that there are activities which they mutually enjoy:

“My brother and I enjoy cooking. I sometimes assist him when we cook spaghetti because it has a lot of ingredients. That‟s our bonding time.” (V, 17 years old)

Some activities may be difficult for them to engage in; however, they still do it because they wanted to maintain harmonious relationship with the sibling with ASD.

“There are times when he wants to say something which are senseless. For example, about cars, traffic, and the things he sees around. I just say, „let‟s talk,‟ because no one else will listen to him.” (P, 16 years old)

Interestingly, with all the activities they mentioned, the participants‟ roles in their siblings‟ lives developed because of their concerns:

“As a brother, I‟m always there for her. Though I‟m in the province with my father, I‟m always concerned for her. I call at home and talk to her, asking how she is doing.” (A, 16 years old)

“Sometimes, kids at school bully him. I argue with them, I annoy and tease them.” (P, 16 years old)

Participants likewise showed unwanted roles which may impede their personal time.

“I‟m her helper. I attend to all her needs and her activities.” (M, 15 years old)

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Future-oriented Perspective

Being future-oriented is an individual‟s outlook taking in consideration the life together and responsibilities with the sibling with ASD, as affected by the nondisabled siblings‟ learning in life and perception of one‟s self as a sibling.

Most participants said that no excessive change will occur in their future, one participant said:

“We will still be like this. Of course, we‟ll still help each other, that won‟t change. We will still take care of him.” (V, 17 years old)

The future of each nondisabled sibling is affected by the individual with ASD, though not directly stated:

“I‟m thinking of entering the entertainment industry. If you‟re an artist, you will have a busy schedule. I still consider how my older brother will be in that situation. It‟s like I‟m setting aside myself first for my older brother.” (J, 14 years old)

Mainly, the nondisabled siblings are willing to assume future responsibilities as suggested by parents. However, some still stated that:

“It is my own decision to take full responsibility of my sister in the future.” (A, 16 years old)

Although parents didn‟t impose specific responsibilities to particular nondisabled siblings, they said that:

“Our parents said that our older brother will stay with our youngest sibling when we grow old. I said that we could all accommodate our older brother, we can all have the responsibility to take care of him.” (V, 17 years old)

When asked about their learning in life with regard to their sibling with ASD, some answered that:

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“I learned that I should study hard, for me to be able to help my brother.”(Q, 13 years old)

“It‟s important that the family is united; it‟s hard for the family to solve a problem if members of the family go their own ways.” (A, 16 years old)

“Patience, I can apply it to different situations.” (K, 17 years old)

Also, nondisabled siblings said that in having a sibling who has ASD, they learned to be more accepting of what they have.

“You have to accept the difference of each one. Respect them all. We also need to cope with what‟s happening.” (A, 13 years old)

“I‟ve learned to give importance to the things that I have.” (P, 16 years old)

Majority said that they became more understanding, open-minded and caring:

“Not all people are blessed to have a sibling like mine because of him we became extra understanding and extra caring towards other people… We, siblings became more hardworking for my older brother‟s sake.” (V, 17 years old)

In the part of the interview where respondents were asked their perception of themselves as siblings to an individual with ASD, they described themselves with regard to what they learned in life:

“Having a brother or sibling like that has made me a very understanding person, a very open-minded person, a teacher of some sort… I am sort of a safe haven to him.” (J, 15 years old)

“Whatever happens, I would do anything for my sibling.” (V, 17 years old)

“I am the type of sibling who never gives up

like I skip school to stay with my older brother at home, I prepare food for him, there were times that I don‟t eat because the food isn‟t enough for my older brother.” (J, 14 years old)

I

put my older brother‟s sake first,

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DISCUSSION

Nondisabled adolescent siblings of individuals with ASD‟s adjustment experiences produced four interdependent and equivocal emerging themes, namely, adaptability, support system, centered relationship on the sibling with ASD and future-oriented perspective. Negative experiences, brought about by the unusual behaviors of the individual with ASD, made the nondisabled sibling feel burdened and unfairly treated. They learned to tolerate and eventually accept the condition they are in, which lead to experiencing positive family involvements. Nondisabled siblings highlighted on putting aside their personal concerns to give way to their sibling with ASD. This is similarly found in the phenomenological study of Carandang‟s “TagasaloTheory (1981) and Decenteceo‟s “PagdadalaSyndrome (1997). The positive and the negative experiences identified by the nondisabled siblings during the interview are inextricably linked to the sibling relationship which confirms the findings of Moyson and Roeyers (2011). Results of this study also provide the importance of support system because it greatly affects how one would cope with the challenges presented in having a sibling with ASD, as stated in the transcribed responses of the subjects. Dealing with tantrums is the most common problem identified by the participants. Upon experiencing such hardships, they communicate their concerns to their parents, siblings, and friends. Parents‟ efforts to assist the nondisabled child to understand the impact of the condition on their sibling‟s behavior uphold good understanding of the conditions (Ross and Cuskelly, 2006). Interestingly, one participant said that he doesn‟t tell anyone about his worries, but he still receives unsolicited advices from his parents. Parental disclosure of the condition of the differently-abled sibling to the nondisabled sibling improves their understanding of their siblings‟ condition which leads to greater acceptance of their siblings‟ condition, readiness to augment their differently-abled siblings‟ limitation in social interaction, and promote better adjustment in the identified themes, namely, adaptability, support system, centered relationship on the sibling with ASD and future oriented perspective. Primary introduction regarding the disability should

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come from the parents for they are responsible for shaping the nondisabled siblings‟ perception about ASD. Their acceptance of themselves as siblings of individuals with ASD is indicated by their willingness to maintain a harmonious relationship between them because when they realize that their brother or sister always will be different, siblings have no other choice than accepting ASD (Moyson & Roeyers, 2011). Getting used to the individual with ASD‟s unusual interests becomes the concentration of their daily activities together. Direct contact and interactions between people with and without ASD over long periods has been shown to be the only effective way of developing positive concepts of Autism (Chambres et al., 2008). The nondisabled siblings revealed activities which they both enjoy, thinking of the activity as a normal one done by typically developing children. With these, their roles as siblings developed into being a caregiver, guardian, and protector, turning out to be the personal support to the disabled sibling. In families with higher levels of family time, parent-child, marital, and sibling relationships were seen as warmer, more loving, and more intimate (Crouter et al., 2004). To further establish harmonious relationships, the participants‟ understanding and accepting abilities of their differently-abled siblings aided their positive interaction with them, leading to be more concerned for the well-being of the sibling with ASD across time which is identified as one of the themes of adjustment, that is, future-oriented perspective. They see themselves together in the future. Confirming Abrams‟ (2009) understanding of siblings as “fellow travelers through the life cycle”, as supported by the local studies of Carandang‟s “TagasaloTheory (1981) and Decenteceo„s “PagdadalaSyndrome (1997), nondisabled siblings are committed to assume the responsibility to take care of the individual with ASD in the future even without parental influence. Providing deeper understanding of one‟s self as a sibling of an individual with ASD and making sense and meaning for being a “fellow traveler through the life cycle” (Abrams, 2009) is the primary purpose of this study, that will lead to better adjustment of each member in the family and afford pioneering sibling

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support programs which will consequently advance the practice of profession within the domain of Special Education.

CONCLUSION

This study was able to explore the lived experiences of nondisabled adolescent siblings in their homes, wherein, four themes emerged as interdependent and equivocal namely, adaptability, support system, centered relationship on the sibling with ASD and future-oriented perspective. The said themes confirmed current, although limited studies in sibling relationships among nondisabled and differently-abled both local and global. Notably, having identified the four themes of adjustment may reshape the understanding of adjustment experienced by nondisabled sibling which is often neglected in many years. Appropriate understanding of such themes and creatively incorporating them in conceptualizing teacher curriculum, support group systems and other professional development programs may also advance the practice, research and policy development in Special Education. The moderatum generalization born out of this phenomenological study provided that respondents‟ acceptance of the condition of the differently-abled sibling, his or her willingness to become a “fellow traveler through the life cycle” (Abrams, 2009), and for being Tagasalo(Carandang, 1981) and for Pagdadala(Decenteceo, 1997), may serve as an inspiration to other families, in confronting possible circumstances that may arise from adjustment of nondisabled siblings to siblings with Autism Spectrum Disorder. As stated in Andres (1989), Filipino values are inherently good and positive, this entails that even in times of difficulty Filipinos show a happy disposition in life; thus siblings in a family with low socioeconomic status can be well adjusted as much as the sibling in a family of high socioeconomic status. Seemingly, one of the common traditions in Filipino childrearing is entrusting to older child the responsibility of attending to younger siblings (Carandang, 1987). It is commonly observed that siblings often take the role of parents‟ aides or supports, identifying with the special concern for the special child‟s well-being (Adams 1971, as cited in Carandang, 1987) therefore, it is a

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laudable practice reflective of the dependable and supporting close family ties and enables the families even with the low socioeconomic status to adjust with their conditions. Future directions for this research may be advanced by other researchers utilizing mixed method or linear education production function methods considering the respondent‟s socio-economic status as developed by sociologists and education economists in gathering a more stable quantitative conclusion.

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