Mother Home Care Patterns for the Care of Their Children with Autism: Grounded Theory Study

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Jenderal Achmad Yani Cimahi School of Health Sciences

158

Mother Home Care Patterns for the Care of Their Children with Autism: Grounded Theory Study

1

**Dania Relina *,**

²

Blacius Dedi,

³

Oop Rope’i

1Suaka Insan School of Health Sciences

2 Immanuel School of Health Sciences

3 Stikes Jenderal Achmad Yani Cimahi

*dania_relina@yahoo.co.id

Abstract

Inappropriate treatment for the children with autism could create further permanently disorder. Lack of standardized home care guidelines for the care of autism patients in Indonesia impedes the appropriate treatment for children with autism. This study aimed to develop the new concept framework for home care pattern children with autism at home. The data gathering involved 9 participants to be observed and deep interviewed complete with field record and study literature. The result of this study was utilized to create new standard operating procedure for autism treatment at home. By giving further explanation regarding; the preparation before the consultation, early procedure after diagnosed, further treatment, information for the environment around, support treatment for successful therapy, therapy for children to be taught by the mother, fulfill the human basic needs, diet, habituation therapy, food serving suggestion, the continuity of consultation with the doctor and psychologist, ways to prevent misperception in disciplining the children, ways to overcome the boredom and stress, treat the patient’s siblings, and development of parent support group. This study provided the pediatric nurses to increase their knowledge and capability in supporting the parents and socializing the autism and it is treatment.

Key words: Care, children with autism, grounded theory, mother, pattern

Introduction

Inappropriate autistic child care can lead to the disorder development among the child itself. Lack of standardized autistic child care pattern guide for mothers at home could trigger a deceleration or inappropriate treatment. Parents of autistic child can not just rely on uncommon care guide that sometimes the implementation does not fit with the culture of the child’s life in Indonesia. Every therapy house for children with autism in Banjarmasin and General Hospital (Rumah Sakit Umum Daerah Banjarmasin) are lacking in providing adequate information about the standardization of autistic child care pattern guide for mothers at home.

In this research, the researcher was trying to continue the previous research in Banjarmasin City, South Kalimantan Province, in order to determine the solution against the existing issue. The previous research is done by phenomenology approach. It was unable to produce the guidance for autistic child care pattern. The researcher, highlighted this problem to conduct a further research about “how did the mother do in taking care of autistic children at home?”. The purpose of this research is to develop the concept structure of care pattern which has given by the mother to autistic children at home.

Methods

This research was administered qualitative design with grounded theory approach. participants are the mothers of autistic children in Banjarmasin. The data were collected through observations and in depth interview with observation and interview method. Observation was done in one month to observe the autistic child care pattern by mothers at home. The observation is done when the participants were taking care of their autistic children, starting from when the children awake till they sleep. Another instrument that being used to collect the data is in depth interview. This guideline contains of 14 questions about care pattern. The instrument was arranged by the researcher with the formulation of several theories from Orem’s Self Care Deficit Theory and Becoming Mother Theory from Mercer. The data were analyzed with Colaizzi thematic analysis.

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International Seminar on Global Health (ISGH) 2017 Jenderal Achmad Yani Cimahi School of Health Sciences

159 Results

The results of the study identified ten care pattern themes, such like:

. History of pregnancy and childbirth disorder by the mother of autistic children

“The baby was fine during the hemorrhage period, so I was told to give birth at the hospital. It was almost 24 hours, still in contraction but it was on full opening of uterus, and starting to fetal distress. The nurse put me an oxygen mask, the amniotic fluid was decreasing and the meconium was already out. My son was born with jaundice appearance but the doctor said that I can bring him home and told me to always bring him outside to get warmth. But it was raining season, so I decided to warm the baby with the blue light in the hospital.”

2. Alleged cause of children with autism from mother’s point of view “Some people said children can become autistic because disorders when giving birth or stressed during pregnancy... I was stressed during my pregnancy because of my mother in law...

I fell down and had minor bleeding when I was in the third trimester of pregnancy, but there was no problem when I checked it... During pregnancy, I never got my desired food... My child was remain silence after the fever… it might be caused by mercury-exposed food... The doctor said that this might caused by the minor bleeding when I was fainting. My child’s allergies started to form when he/she was introduced to cow’s milk...

At the age of 1,5 years, he/she likes to watch YouTube video. I gave that in order to prevent him/her from crying. At that time, the eyeball and his/her speak became less-focused ”

3. Efforts made by mom to autistic children

“I ‘googled’ about signs of autistic children, some signs are existed on my child ... I took him/her immediately to Child Growth and Development doctors and diagnosed his/her autism and attempted biomedical check .. ”

4. Mothers’ feelings and hopes to their autistic children

“It was really sadden me, but I let it be. I was never felt ashamed and overwhelmed… If my child had a therapy earlier, he/she might cured faster… I do not want people to differ my child from the other normal children... I wish my child stay healthy, learn to talk fast and be smart like the other normal children I also hope my child can be an independent, and responsible child and also easy to adapt with his/her environment..

It should be a health education for parents of autistic children, a lecture or seminar about a suitable food and a daily care pattern for the children ”

5. Source of information to increase mothers’ knowledge in taking care of autistic children

“Sharing information with mothers regarding therapy house and apply it to my child ... But I do not apply all of them because I know the most which is suitable for my child ... I gathered some information from the therapy house, and I also took a course about guiding children with special needs on pre-school in Surabaya. .. I also received the information from doctors, biomedical results and google. .. but there is no specific book about educating children with special needs. I just read a book about how to make nutritional food for autism children .. ”

6. Mothers’ dominant role in taking care autistic children

“I discussed it with my husband, but I take the most dominant role in taking care my child.”

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160 7. Supporting and inhibiting factors of taking care autistic children

“Supports from family.. My husband provides the needs for me and my child… Some family members recommended me to stop giving therapy to my child because it separates me and my child, but I do not do it.”

8. Communication method and act of giving commands or punishments to autistic children

“I am more decisive rather than my husband when it comes to educating my child and I always try to be consistent with this method. I must show my influence to my child. If I make a promise to my child, it has to be consistent.”

9. Motivations and rewards to autistic children

“I always motivate my child with the compliment. For example when my child was tired and asked to be fed. At first I followed the request then I said “good boy! Now try to eat it by yourself... You’re a smart, clever kid.” And finally he/she did it by himself/herself. I give a reward with a hug and compliment…

Sometimes, I said “hooray!” and I kissed him/her too, compliment by clapping hands, or even teased him/her with candies… I also give compliments if he/she write something correctly (with claps and said “hooray!”)... The point is the children are still needed compliments. I also confirm his/her act by giving two thumbs up as a compliment too. But I never promise a gift to my child...”

10. Autistic child’s potentials that can be developed

“He/she likes to write letters, from A to Z in a row, but nobody teach that before… He/she also likes to draw and arrange television’s logos such as Trans 7, Metro TV, RCTI...”

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161 Achmad Yani Cimahi School of Health Sciences

International Seminar on Global Health (ISGH) 2017 Jenderal

Fig. 1 Grounded Theory Framework of Mothers

Home Care Patterns for The Care of Their Children with Autism

Discussion

The researcher attempted to formulate the SOP of autistic child care for mother at home, based on the research and from the expert consultation with pediatric specialist nurses, nerve specialist doctors, child neurologist specialist doctors and child psychologist.

Standard Operational Procedure (SOP) for caring the suspected child with autism by mother at home based on this research explains about:

1. Mother/parents preparation when consulting the doctor

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162 a. Prepare the question list. Try to be honest as possible when explaining child’ situations, it will help the healing for the child.

b. Start the question with the format:

1) Ask the doctor about child diagnosis and where to find the further information

2) Question about education, can include of what therapy that can be done, where and whose the person that competent to the related therapy.

Standard Operational Procedure (SOP) for caring the child with autism by mother at home based on this research explains about:

1) First procedure when a child is diagnosed with autism 2) Advanced care to autistic child

Parents will train every family member and babysitter that involved in caring and how to find the best way to handle the child. Parents are responsible as a good manager in managing people that take part in child care. Advanced care to children diagnosed to autism are:

- Keep the good communication with pediatrician, teacher in school and child therapist, also with people who are competent on handling autism

- Be honest and be open when it comes to communicating child’s conditions and his/her development, never feel ashamed or cover things that is supposed to be told because it will inhibit the healing that can be given effectively by those who are expert in this particular field

- Come to the right information center for children with autism and gather information about programs, doctors, schools, psychologists and nearest and accessible therapy houses, also information about autistic child care

- Come to therapy houses for children with autism and get a suitable care program for children

- Gather information about autism from books, browsing from internet, attend to a seminar, workshop, and discussion with competent professionals

- It is really important to join with parenthood with the same cases, with those who have autistic children, because they can share about care method which they have done, good therapy houses, schools with programs for autistic children or school of inclusion, autistic child care at home and the most important thing is they have a support group from parents with similar problems so that able to support each other and realize that you were not alone facing autistic child and everything can be handled together

- Manage finances and if it necessary, make financial plan related to child care

- Keep the solidarity with husband/wife as a team to optimize child’s growth and development.

2. Information about the child that has to be spread to the neighborhood 3. Mother/parents action to support the therapy successfulness

The success of therapy are supported from 3 R (Routine, Repetitive, and Regular). Routine, gives the clear structure to the child, what time he/she will start the therapy and what time it will be over, in one time allocation every day. With this, the child will be understand more of what he/she about to face, so they won’t be afraid. Repetitive, purposed so that the child will have a chance to try as many times as possible before they possess the ability that has been taught. The repetition makes the child more confident to try. Repetition makes the possessed skill/ability, become an automated things that can be done in the future. Regular, makes the child calmer because he/she used to the regular therapy. The often the child used to regularity, the easier for him/her to understand of what to do.

4. Therapy technique mother can teach by herself to her child at home as the advanced therapy from the therapy center.

5. The method to train fulfillment of basic human needs on child with autism

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163 6. Diet therapy on child with autism

7. Habituation/rigidity therapy on child with autism

8. Food serving suggestions for mother on child with autism

9. The importance of routine consultation with doctor and pyschologists to know the child improvement and to evaluate the program according to the potential of the child.

10. How to solve the opinion differences between mother and family/sisten in discipline the childern.

11. Way to solve boredom and stress on parents of autistic childern 12.Mother ways to do child pattern to siblings of autstic child 13.The importance of parent support group

14.The importance of parent support group

The research result produced 10 themes of autistic child care pattern for mother at home, the results are as follows:

a. History of pregnancy and childbirth disorder on mother of autistic children

Researchers look at the concerns and allegations arised about the cause of the occurrence of autism associated with a history of pregnancy and maternal childbearing disorders of children with autism actually not all true. The occurrence of autism in the disturbances, steroid secretion disorders , and blood flow. Various psychiatric disorders may also arise eg depression, schizophrenia, Down syndrome, Alzheimer's, autismetic disorders, ADHD, etc.

b. Alleged cause of hildern have autism from mother’s point of view c. Efforts made by mom to autistic children

All participants/mothers take their children to health care to confirm the diagnosis of autism in their children, although there are three participants who first take their children to the therapy house, then to the doctor. One participant took her child to a doctor but did not buy prescribed medications due to limited funds and assumed that her child was okay, thus assuming her child did not need the medication. Nine participants are fast enough in handling their children and receive all suggestions received from others as well as information from the internet.

d. Mothers’ feelings and hopes to their autistic children

The results of this research indicates that the mother experiencing stages of refusing or grieving and reached a stage to accept the fact that she has children with autism.

Participants commonly found similarities in the final stages of grief as described by Kubbler-Ross (2007), Collins (2008), where the final stage of grief is the receiving stage. This stage is marked by the return of energy that has been lost during the process of grieving, improving decision-making and confidence and planning how to solve problems. In this research the family feel grateful and able to understand the condition of the child and feel happy when seeing the development of children's ability to be better. This will foster the ability of families to be able to adapt to the existence of children with autism so as to decide and plan ways to care the children with autism.

Parents have accepted their child's condition, so they are more comfortable in dealing with the behavior and needs of their autistic child.

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164 This research identifies the hopes of mother to child with autism that is child development. Child independence is a major hope for mothers with children with autism. The independence of children living with autism is divided into two groups, the optimal development of children and increased public awareness of children with autism. Optimal development of children is divided into five categories: the behavior of children, improving rough motor skills, improved fine motor skills, improved cognitive abilities, and improved language skills.

These hopes are the desire of the family to improve the ability of children to achieve a better life for children with autism and the families themselves, especially in terms of skills mastery that have not owned by children with autism, so that after the child mastered a capability that became the family's hope, the motivation will grow during caring the children with autism, and families will grow new expectations of the children's abilities.

Mothers/parents acceptance to children with autism is influenced by supporting factors from extended families, family financial capacity, religious background, education level, marital status, age and support of experts and the general public. The nine participants participate in the care of their child with autism, ranging from ensuring the doctor's diagnosis, fostering communication with the doctor, seeking another doctor if the doctor is considered less cooperative, telling the truth when doing consultation about the child's development, enriching the knowledge, and assisting while the nine participants did not have much time to join the Parrent Support Group and lack of information about it.

e. Source of information to increase mothers’ knowledge in taking care autistic children

In this research, all participants were very actively seeking information on how to take care children with autism by mothers, both from doctors, therapists, schools, from mothers who are also have children with autism and also the internet, and almost all participants adhered to implement the treatment programs, therapy programs and positive suggestions received. Participants who are not too obedient and often violate the treatment program and child therapy program, only participants 5. Participant number 5 does not pay for her child's neural stimulus drugs, because she considers her son is not sick. All participants increase their knowledge in caring for children with autism by seeking information from people around and experts, as well as from reading from books and online media. All the ways that mothers have done still can not answer the curiosity about the correct way to care for children with autism while at home by the mother or caregiver.

f. Mothers’ dominant role in taking care autistic children

in this research benefited from the treatment actions they performed consistently, just as the child understood the rules clearly. This is in line with the statement from Reece (2007) which is a consistent environment is the best tool for children with autism to learn. Consistency in daily routine, discipline, communication, social interaction, and experience all contribute to strengthening their learning environment.

Children with autism more often have difficulties in transferring what they learn from one experience to another. There are several things to consider such as child's temperaments, individual needs, schedules and commitments. Routines in children with autism provide them the opportunity to predict everyday events that can make them feel safe. Consistency in this research is very beneficial by participants when they see their children able to be given roles and responsibilities in accordance with its ability. The behavior or closeness of the mother-child relationship and the competence of the child is one of the goals of the "becoming mother"

model according to Mercer. Another purpose is the cognitive or mental development and child health (Tomey & Alligood, 2014).

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165 g. Supporting and inhibiting factors of taking care autistic children

Families with autistic children who get good social support from family and social systems will experience a positive impact on health and emotions. The source or origin of the support gained by the autistic children's mothers in the study came from families and the environment. Family support comes from the family members and extended families of participants, husbands, other children, parents, siblings and cousins, while support from the environment comes from people around mothers and community organizations, caregivers, teachers and autism education foundations.

The results of this research indicate that the role of husband is very significant in caring children with autism. Husbands are caring the mother of children with autism, but there are 3 participants whose husbands do not care about the child's care, simply delegate to the mother in full, so that it causes fatigue and boredom to the mother. Father's less concern according to because the father often hide feelings, anxiety and bury anger and avoid problems that are in the house so choose to work longer and outside the home environment. The support gained from the participants is more than the other children, siblings, cousins and parents. This is partially similar to Koesoemo's (2009) research findings which suggest that social support as a form of family needs in caring for children with autism comes from parents and children. Support comes from the Family, friends and neighbors. Other sources of support authors identified in this study were caregivers, teachers and autism education foundations.

This research revealed that the form of support received by mothers in caring for children with autism are in the form of informational support and instrumental support. Informational support obtained by the mother is the provision of information related to autism, advice, type of informal education and type of therapy for children with autism, delivered both directly and through the television media, while support awards given by the autism education who would follow the advice of the mother of the child with autism to give homework every end of school classes so that children keep learning even at home.

Obstacles are various things encountered and lead to difficulties for mothers in caring for children with autism. Sources of obstacles are grouped into four: barriers derived from mothers, children, fathers and the environment around children, neighbors/peers. Barriers derived from the mother are identified into four parts, physical, psychological, financial and time. Maternal physical fatigue is often a constraint in the care of children with autism. Mother must always have enough stamina, because caring and accompanying children with autism will drain physical energy. This is supported by the results of Inus' (2007) research that effective treatment takes a lot of time and energy.

Excessive behavior shown by children with autism when taken to public places often cause others disturbed, this makes the mother feel afraid or anxious when bringing autistic children, as well as when going to certain events. In this study also identified that children with autism are unpredictable, tend to be angry, and unable to control emotions, which according to American Psychiatric Association (2013) it becomes an obstacle for the mother, because the mother feels rejected when what has been done to try to understand the child Ignored by the child, but on the other hand the mother also does not want to ignore child.

Lack of independence in children with autism is also an obstacle in treating children with autism, because mothers have a sense of concern that can not leave children with autism without anyone's accompany, this is the same with the results of research Inus (2007) that parents posses worries at Children with autism. This causes the mother to have limited time to socialize outside the home, this also can cause boredom to the mother.

Obstacles are also felt by the mother because of the attitude and behavior of the father who is less supportive so that mothers feel a sense of greater responsibility, and the attitude of child's peers who like to hit, often harassed and do not want to hang out with them so that the mother feels the child with autism shunned by The environment.

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166 This research identifies ways to overcome problems when caring children with autism with the form of attitude and action of the mother. Mother's attitude to overcome the barriers generated in this study is divided into three parts, namely praying, resignation and patience, while the mother's actions overcome obstacles are divided into six parts, namely admonishing children, controlling child behavior, restrict child interaction, give punishment to children, telling stories with friends who are also have autistic children as well as a child's teacher, and cries. This study is different from what has done by Koesoemo (2009) which identifies three ways to overcome problems when caring for children with autism, namely modification of ways, coping mechanisms and family empowerment.

American Psychiatric Association (2013) states that there is no definitive method guidance on how to deal with must be flexible and open minded to the various options available, and whenever possible should be tailored to the conditions of the child autism while maintaining the strengths, weaknesses and needs of children with autism.

h. Communication method and act of giving commands or punishments to autistic children

The results of in-depth interviews of participants with autistic children showed there was an variation of expressions in how to communicate and the mother's actions in giving orders or punishment to children with autism. Mother as a participant in this study revealed her response with various statements. Participants say how to communicate and act mothers in giving orders or punishment to children with autism is supported by two categories: firm and consistent.

Parenting communication patterns with autistic children according to Boham (2013) are: Autism handling by parents at home is initiated by parents seeking information about autism and the information is mostly obtained from listening to the radio, reading magazines, watching TV, articles, newspapers and Internet and sharing with parents of fellow children who experience autism disorder and then proceeded to consult a doctor, a psychologist. Then in the academic field, children brought to a special school that is extraordinary school for children with autism. Parents and families understand that autism disorders in children is a disorder in the aspect of socialization so that the child's behavior has difficulty or delayed in making relationships or mutual interactions with others, including hanging out with peers so that children seem to prefer to be alone or live in their own world and interference in the communication aspect so that children have difficulty or delay in speaking aspects so it is difficult to be able to balance communication with others and show repetitive or repetitive behavior. Some parents directly handle autism children at home, but lack the clear guidelines in doing handling programs including communicating exercises so that the programs performed depend on the programs implemented at the school and the parents just continue it and even some parents who hands the child's handling at home to caregivers and brings in a therapist like a teacher to provide home therapy in private. The pattern or the way parents communicate with children at home is through obedience practice followed by eye contact through their respective settings and when two things happen the child will be rewarded such as compliments and hugs, then followed by pronunciation of letters or asking "who's your name?", "what are you doing?" or invites children to sing short songs even in the academic field children are taught to write, read and count and when it successfully done by children, they will be followed by rewards such as compliments.

In this research, all participants told about how to communicate and the mother's action in giving orders or punishment to children with autism must always be firm and consistent. The words used to prohibit and instruct the child should be short and clear words, such as the word "no" to give a ban, spoken explicitly and clearly. Punishment is given if the child makes a mistake, the type of punishment should have been discussed to the child before it is implemented. At the time, the researcher observed many mothers reminded the previous punishment, when the child made a mistake, so if the child made the first mistake, the mother would remind the previous agreement to prevent the child from making mistakes, for example if the child is wrong it will be confined in the room.

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167 i. Motivations and rewards to autistic children

Parents' actions that are able to motivate children with autism can be by making contracts or agreements when they have to do something to train their discipline or train their children to fulfill their basic daily needs. Parents can give compliments and rewards of a favorite object or child's food if the child is able to do what has been agreed previously as a motivation for the child (Pamoedji, 2010). Every child expects compliments, and in a child with autism, compliments can be useful as a 'right path' guide. Give compliments through words or show affection of the parents, if the child can answer well what you ask.

Participants in this research said the methods to motivate and reward children with autism is involving affection and compliments, and rewards. All children are very happy when praised and from the researcher's observation, after which the child will be happy to do the same again. Some parents are also not used to give a gift to their child when successfully doing certain things, but for affection in the form of hugs and kisses and compliments is always given by all participants to their children.

§ Autistic child’s potentials that can be developed

Dr. Purboyo Solek, Sp.A (K), also stated in the second phase of management of children with autism after the behavior is to complement basic life skills such as brushing teeth, using soap, bathing, watering, washing, wearing shoes, wearing clothes, and shoelaces , And able to difference and understand what is minimarket (indomart, alfamart), and hospital, because in his entire life may be sick, so should know there is a doctor there, there is a dentist, and there are nurses, know the market, barbershop, and other it is an expanded basic life skill. The management on the first phase trips to phase two, can be determined the level of IQ, where high functioning IQ is above 70, middle functioning between 50-70, low functioning below 50. Children with autism on low functioning are not attending school, but can be replaced to vocational schools. The first and second management is complete, then entering the two new phases where there is a determination whether of the child can be school or not and determine of where the child's potential is located. Different children with autism who have found their own potential, it should be understood that children with autism could be smart to play music and ready to perform, but to be invited to discuss thinking and determining how the rates, discussing the preparation of any stage and negotiating with other people and the problem of other things, will still concerned as difficulties, that's the difference from the normal children.

The researcher suggest that all participants/mothers should consult a professional physician and psychologist who has experienced handling of children with autism so as to consult the child level as well as assisting in setting goals and therapeutic programs, in order to help to determine what education is suitable for the child and to show children's potential who can benefit for themselves. Mothers can gather their children with other children with autism who have the same talent to be developed and can be useful for children by making a sharing group of mothers who have children with autism, after knowing the child's talent.

Conclusion

Mothers/parents' acceptance to their children who have autism while home-caring is influenced by family support factors, family financial capacity, religious background, education level, marital status, age and support of experts and the general public. The nine participants participate in the care of their child with autism, starting from ensuring the doctor's diagnosis, fostering communication with the doctor, seeking another doctor if the doctor is considered less cooperative, telling the truth when doing consultation about the child's development, enriching the knowledge, and assisting the child during therapy. Parrent Support Group has not run maximally by the nine participants, because they still rely on information from the therapy house and the doctors itself, communication between mother/parents only intertwined when they accompany or deliver their children undergoing therapy so that the information obtained is still limited.

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168 Acknowledgements

I would like to express my sincere gratitude to Sister Imelda Ingir Ladjar, SPC, BSN, MHA as a Dean of STIKES Suaka Insan Banjarmasin who provided the primary allowance for this study. Blacius Dedi, Dr.Kep.,S.KM.,M.Kep and Oop Rope’i, M.Kep.,Ns., Sp.Kep. Kom as my Thesis advisors. dr.Purboyo Solek, Sp.A (K), dr. Kristiantini Dewi, Sp.A, Diah Puspasari, M.Psi., Psikolog and Rika Harini S.Kep., Ners, M.Kep, Sp.An the experts who helped me arranging the standard operational procedures. I also owe many thanks to the participants who were able to join my research.

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