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Table of Contents
ORIGINAL ARTICLE
Year : 2019  |  Volume : 51  |  Issue : 3  |  Page : 107-112

Understanding parents' difficulties in executing activities of daily living of children with autism spectrum disorder: A qualitative descriptive study


1 Department of Occupational Therapy in Paediatrics, Goa Medical College, Bambolim, Goa, India
2 Department of Occupational Therapy in Orthopaedic Surgery, Goa Medical College, Bambolim, Goa, India

Date of Submission27-Jul-2019
Date of Acceptance05-Sep-2019
Date of Web Publication20-Sep-2019

Correspondence Address:
Dr. Siddhi Jaikrishna Naik
Goa Medical College, Bambolim, Tiswadi, Goa
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/ijoth.ijoth_22_19

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  Abstract 


Background: Activities of daily living (ADLs) refer to the ongoing behaviors that occur on a daily basis. Such behaviors include eating, cooking, bathing, social interactions (such as leisure activities, attending school or work, or assisting with chores), and other activities that one might routinely expect an individual to perform or participate in. Some of the major ADL tasks include personal hygiene, toileting, dressing, and eating. Researchers have documented delayed self-care performance in children with autism spectrum disorder (ASD). Parents report their child to have difficulties with feeding and toileting in particular. Objective: This qualitative pilot study endeavored to understand the difficulties faced by the parents of children with ASD in conducting their children's ADL. Study Design: Qualitative descriptive study was chosen for the research. Methods: The qualitative descriptive study included participants (n = 20) whose children were primarily diagnosed as ASD. Convenient sampling method was used for study sample calculation. The study included parents of children of age group between 5 and 9 years (mean ± standard deviation [SD]: 6.9 ± 1.57 months) with intelligence quotient of ≥80%. The study was conducted in a tertiary care hospital. The parents (fathers = 9 and mothers = 11) were given a semistructured questionnaire to understand difficulties faced by the parents of children with ASD (mean ± SD: 5.56 ± 33.6 months). Results: According to the study, it was observed that most of the parents have reported that their child had maximum difficulties in eating, followed by brushing and grooming and least for toileting. This study also found the priority list of difficulties in ADL. It was noted that early and proper training of the child gives good results in managing a child with ASD. Many parents reported that early training is beneficial. Conclusion: The outcome of this study shows the hierarchy of difficulties in ADL reported by the parents of children with ASD. This study also found that early ADL training gives good results in managing child with ASD.

Keywords: Activities of Daily Living, Autism, Parent's Difficulties


How to cite this article:
Naik SJ, Vajaratkar PV. Understanding parents' difficulties in executing activities of daily living of children with autism spectrum disorder: A qualitative descriptive study. Indian J Occup Ther 2019;51:107-12

How to cite this URL:
Naik SJ, Vajaratkar PV. Understanding parents' difficulties in executing activities of daily living of children with autism spectrum disorder: A qualitative descriptive study. Indian J Occup Ther [serial online] 2019 [cited 2019 Oct 22];51:107-12. Available from: http://www.ijotonweb.org/text.asp?2019/51/3/107/267481




  Introduction Top


Autism spectrum disorder (ASD) is a developmental disorder that affects communication and behavior. Although ASD can be diagnosed at any age, it is said to be a “developmental disorder” because symptoms generally appear in the first 2 years of life. According to the Diagnostic and Statistical Manual of Mental Disorders-5,[1] children with ASD have difficulty with communication and interaction with other people; restricted interests and repetitive behaviors; and symptoms that hurt the person's ability to function properly in school, work, and other areas of life. Activities of daily living (ADLs) refer to the ongoing behaviors that occur on a daily basis. Such behaviors include eating, toileting, bathing, dressing social interactions (such as leisure activities, attending school or work, or assisting with chores), and other activities that one might routinely expect an individual to perform or participate in.[2] Researchers have found difficulties in executing ADL in children with ASD.[3] Parents have difficulties to manage various ADLs, difficulties with feeding and toileting in particular.[4]

The main objective of this study was to understand the difficulties faced by the parents in executing ADL in their children with ASD. This study helps in understanding and improvising the management of execution of ADL in children with ASD in the occupational therapy practice.


  Methods Top


Procedure

A qualitative descriptive study was conducted on the parents (age range = 26–45 years) of children with ASD of age 5–9 years, residing in Goa, India. The study was carried out at the pediatric neurorehabilitation center, Goa Medical College, Goa, India. The recruitment of parents of children with ASD was done by convenient purposeful sampling method to ensure representation of diverse subgroups of the population in Goa. The sample sizes of twenty parents residing in Goa were taken for the research [Table 1]. Children of the parents were diagnosed by qualified clinicians using standard diagnostic criterion for ASD. Families recruited unevenly represented a higher educational and socioeconomic group background (e.g. engineers, doctors, and business management professionals).
Table 1: Participant Group for In-depth Interviews

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Participation was voluntary and written informed consent was sought before enrolment of the study. Ethical approval was obtained from the Institutional Ethics Committee, Goa Medical College, Goa, India. All results were presented in an anonymous fashion with the least possible identifying information.

In-depth, semistructured interviews with families explored themes which covered experiences of parents in managing daily routine and executing ADL of their children and strategies used by them to manage these difficulties. The questions were open-ended, and researchers explored the parent's experience to get sufficient details of the lived experience. Each interview was conducted on a one-to-one basis and everything was noted in detail, which was simultaneously recorded in a single session which lasted for 1–2 h with additional follow-up via telephone, as needed. The language used was of the parent's preference (namely, Konkani, Marathi, English, or Hindi).

Data Analysis

The analytic process is shown in [Figure 1]. The interviews were taken in English, Konkani, Hindi, and Marathi and were transcribed verbatim into English by the author who is multilingual. The interview themes were developed iteratively, starting with the set of research questions by the authors [Annexure 1]. Codes from the data were identified and defined in an iterative manner [Figure 2]. Analysis aimed at describing parent's understanding difficulties faced by them in executing ADL in children with ASD in Goan population. This resulted in a refinement of the coding framework. The remaining transcripts were coded using this framework.
Figure 1: The Analytical Process

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Figure 2: Coding Framework

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  Results Top


Understanding Difficulties in Implementing Activities of Daily Living

In this study, we have found that many of the parents of children with ASD have difficulty in managing their child's daily living activities in individual areas of activities such as brushing, eating, toileting, and other basic activities. Parents manage the ADLs which are necessary for a child's well-being using various strategies which are discussed in the present study. The understanding of parent's difficulties in executing ADL of children with ASD has been described as follows.

Eating

Most parents (n = 19) have difficulty in managing eating activity of their child. Most of their complaints refer to their child not liking slimy or sticky food or does not like the smell of the food. Furthermore, some parents reported about their child not biting food or holding food in their mouth for a long time.

One parent reported that, “my child does not like to eat sticky food items like rice etc., by himself…He does not eat by himself, needs to be fed.”

Another parent reported that, “She (child) smells food before eating.”

Managing these problems, parents have evolved their own strategies.

One mother reported that, “I feed the child rice and curry… then giving him spoon to eat food. Vegetables are put inside the chapatti dough after grinding and then fried.”

Other mother found that, “Change in position of hand while feeding the child when the child does not open mouth to eat food… also giving him mobile or songs to hear while having food.”

Toileting

Many parents (n = 17) complained of difficulty in implementing toileting activity of their child. It is difficult for the parents to manage toileting activities, especially when they are at public places as stated by some parents. However, some parents also stated that early toilet training has helped them and the child to carry out toileting activities.

One parent reported that, “my child pulls me towards the toilet to accompany her when she wants to do potty.”

Another parent reported, “He (child) goes voluntarily to the toilet when he wants to go, but only needs assistance while cleaning himself.”

One of the parents reported that, “my child does not go to the toilet at all, and they have to use Diapers o manage his toileting activity.”

Managing these problems, parents have evolved their own strategies.

One mother reported, “I have started toilet training with her (child) and assist her while she goes to the toilet.”

Another mother reported, “I take him immediately to the toilet when he shows any signs that he wants to go to the toilet… and use diapers for him when I have to take him out.”

One mother said, “I use visual schedules to teach him about toileting activity.”

Brushing

Most parents (n = 16) have difficulty in managing brushing activity of their child. Their major concern was that their child is not allowing to brush, becomes irritable while brushing and swallowing toothpaste while brushing as the child cannot spit. It becomes very difficult to manage this activity by parents, especially if it is a school-going child as stated by some parents.

One parent reported that, “my child becomes fussy and cries a lot when taken for brushing and needs to be held tight by the father and I brush his teeth then.”

Another parent reported that, “he (child) does not know how to spit and so swallows the toothpaste.”

Managing these problems, parents have evolved their own strategies.

One mother reported, “I take help from my mother-in-law or my husband to hold him while I brush his teeth.”

Another mother said, “I brush her teeth with finger rather than using toothbrush.”

One mother reported, “I use children friendly toothpaste which was advised for him at his school.”

One mother attempts to teach her child the brushing activity “after brushing is done by me, I give the toothbrush to brush teeth herself.”

Dressing

Many parents (n = 15) have difficulty in dressing activity of their child. They said that their child will not wear certain types of cloth materials, printed clothes, and clothes with tags and collars. One of their major concerns was dressing them up for school.

One parent reported, “He does not like tight fitting cloths and cloths with tags.”

Another parent reported, “he gives a hard time while dressing him up for school.”

One mother said, “he cannot wear a shirt by himself and needs to be assisted by someone, he can wear pants by himself but takes a lot of time which makes him late for school.”

Managing these problems, parents have evolved their own strategies.

One mother reported, “I take help of family members or get a stick.”

Another parent reported, “since he does not like to wear cloths with tags we buy him cloths without collars and tags.”

One father said, “his mother dresses him up for school.”

Grooming

Many parents (n = 13) complained of difficulty in grooming activities. Activities such as cutting hair, washing face, combing hair, and cutting nails are difficult tasks to manage with the child. Some of the few experiences shared by the parents are as follows.

One parent reported that, “my child does not allow to comb his hair and becomes irritable if hair is combed.”

Another parent reported that, “he (child) does not allow to cut his hair and needs to be held tight by more than two people when taken for a haircut.”

Managing these problems, parents have evolved their own strategies.

A father reported, “he has to be held tight by two people.”

A mother reported, “I give him any game to play on the phone or promise him to give to watch a cartoon…then he co-operates.”

Another mother reported, “I wash her face with just water or apply soap on the face leaving the area around the eye.”

A mother reported that her child does not cooperate when combing her hair so she uses strategies to manage the same, “I comb her hair forcefully or I distract her by giving her phone, toys or T. V to watch while combing hair.”

Bathing

Very few parents (n = 2) have reported difficulty in implementing bathing activity for their child. Most of the parents stated that their child enjoys bathing and cooperates when bathing and is easily manageable.

One parent reported, “He (child) enjoys playing in the water and does not trouble while bathing him.

Another parent reported that, “he (child) voluntarily goes to have bath after coming back from school… he does not need prompting again and again.”

One parent reported,She (child) needs to be forcefully taken inside the bathroom for bathing.”

Managing these problems, parents have evolved their own strategies.

One parent reported,I allow her to play with water while soap is applied when bathing… and I keep a fixed time for bathing.”

Sleep

Many parents (n = 14) reported problems of sleeping patterns of their child. Some children do not sleep at night and children wake up very early in the morning, altering the sleep patterns of their parents and family members. Some parents also reported that if their child has a good sleep, he/she tends to be less irritable throughout the day.

One parent reported, “My child will not go to sleep unless everybody in the house goes to sleep.”

Another parent complained, “He (child) gets up very early in the morning even if she goes to bed late.”

Managing these problems, parents have evolved their own strategies.

One mother reported, “We switch off all the lights of the house and have a fixed scheduled time to go to bed.”

A father reported, “I play with him for around one hour before bed time so that he gets tired and goes to sleep.”

Communication

A lot of parents (n = 15) showed concern toward their child's communication issues. It is one of the major problems in a child with ASD. It is very difficult for the child to comprehend as well as for the parents to understand what the child wants and it is difficult for the child to engage in the society.

One mother reported, “my child speaks but when does not know how to reciprocate communication when asked unusual questions especially on phone.”

Managing these problems, parents have evolved their own strategies.

The mother is trying to manage the child and train him for this skill, “I am teaching him how to communicate when questions are asked on the phone.”

Hierarchical order of difficulties in executing activities of daily living

This study also found the hierarchy of difficulties in executing ADL in which eating is listed as the most difficult task to conduct, followed by toileting, brushing, dressing, grooming, and bathing. It was noted that early and proper training of the child gives good results in managing a child with ASD. Most of parents reported that early training is beneficial.

Support to the parents in the management of activities of daily living

Apart from the above-mentioned findings, parents also reported that extended family members, especially grandparents, helped parents manage schedules and were often the first line of support.

It makes a great difference to a child with disability when there are other family members in the house” said one mother.


  Discussion Top


This study aimed to describe the understanding of parent's difficulties in executing ADL in their children with ASD in Goa, India, through a qualitative research with the parents of children with ASD. This study observed several key findings: first, difficulties of executing ADL in children by their parents; second, it was found that parents are finding their own strategies to manage the difficulties in executing ADL; and third, major finding was most parents reported that eating and toileting activities are the most affected areas in execution and difficult to manage.

The major finding in this study was difficulties in executing ADL by the parents of children with ASD. In this study, we have found that many of the parents of children with ASD have difficulty in managing their child's daily living activities in individual areas of activities such as brushing, eating, toileting, and other basic activities. This is supported by earlier studies which found that parents' mentions of difficulty in ADL experienced by children with ASD encompassed different aspects of daily life, including feeding (“he used to eat roti [bread], but never touched the vegetables”), clothing (“he can't put on his shoes by himself”), sleeping (“he never used to sleep till 2–3 at night”), and toileting (“he does not tell when he needs to use the toilet”).[5] Another study reported that parents raising a child with ASD face extreme difficulties in dealing with challenging behaviors, teaching their child to communicate, teaching basic ADL skills, guarding their child from danger, and preparing their child for adult life.[6]

Parents are using various strategies to manage their children and constantly trying different strategies to manage their child's day-to-day activities. As reported by most of the parents, use of various strategies makes it easy for the parents as well as the child to manage their daily routine. This is also supported by various studies which were conducted earlier. A study evaluated a reinforcement-based toilet training procedure for children with ASD and proposed a procedure which is an effective and rapid method of toilet training. This proposed procedure can be implemented within a structured school setting with generalization to a home environment.[7] Another study provided pertinent information regarding ASD and described a study based on a parent survey of feeding patterns in children with ASD to give a new perspective for both parents and professionals.[8] It was also noted that even after using strategies, it is difficult for the parents to manage the child at home and especially at public places. In another study, parents reported that routines were much easier to follow in familiar spaces such as their own home, but more difficult in unfamiliar places such as their relative's home or out in the community.[9]

Another major finding of this study was that most of the parents reported that among all the activities, eating and toileting are the most difficult activities with an autistic child. Studies done earlier also concluded that parents report their child to have difficulties with feeding and toileting in particular.[4] Furthermore, a hierarchical order was retrieved from this study on ADL, which shows the most difficult to least difficult activities in executing on children with ASD in which eating is listed as the most difficult task to conduct, followed by toileting, brushing, dressing, grooming, and bathing.

Limitations of the Study

The relatively small sample size and specific context of the study was aimed at acquiring rich descriptive data; as a result, the parent group is not representative of the general population, and therefore, generalization of the study findings should be considered with caution. However, it is noted that the findings are consistent with other studies from India and other countries. Thus, even though the study was conducted on a relatively “informed” group of parents, it indicates that there are likely large gaps in access to care in larger population in Goa and may be elsewhere in India.

Research and Clinical Implications

The study findings indicate that having a child with ASD in a family changes the life of the parents as well as the other family members. The study concludes major difficulties seen in eating and toileting, followed by other areas of ADL as well. This finding in an occupational therapist point of view will help in planning a treatment program for a child with ASD, mainly focusing on early ADL training and parent education. Furthermore, the problems in ADL are caused due to sensory issues which are a common problem in a child with ASD, which also needs to be taken into consideration in future researches.


  Conclusion Top


This qualitative study observed a range of difficulties in execution of ADL in children with ASD in Goa, from which a hierarchy of difficult ADL was also retrieved, which shows that the parents have maximum difficulty in executing eating, followed by brushing and grooming and least for toileting. Most parents undertook diverse strategies to manage their child's daily routine, which was effective in familiar looking places.

Financial Support and Sponsorship

Nil.

Conflicts of Interest

There are no conflicts of interest.

Annexure 1: Questionnaire

  1. A semistructured qualitative guide for parents of children with autism spectrum disorder
  2. How do you manage your daily routine?
  3. How does your child's daily routine go about?
  4. What are the major problems you face while handling your child in his daily activities? (e.g. Brushing, Eating, Toileting)
  5. What is the reason you feel the limitation?
  6. What is the hardest for your child?
  7. What strategies do you use to manage the above-mentioned problems with the child?
  8. Were the strategies used affective?




 
  References Top

1.
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Arlington: American Psychiatric Association; 2013.  Back to cited text no. 1
    
2.
Myles BS, Swanson TC, Holverstott J, Duncan MM. Autism Spectrum Disorders: A Handbook for Parents and Professionals. Vol. 2 (P-Z). U.S.A: Praeger; 2007.  Back to cited text no. 2
    
3.
Jasmine E, Melanie C, Mckinley P, Reid G, Fombonne E, Gisel EG. Sensory motor and daily living skills of preschool children with Autism spectrum disorder. J Autism Dev Disord 2009;39:231-241.  Back to cited text no. 3
    
4.
Mc Lennan JD, Reckord M, Clarke M. A mental health outreach program for elementary schools. J Can Acad Child Adolesc Psychiatry 2008;17:122-130.  Back to cited text no. 4
    
5.
Dyches TT, Wilder LK, Sudweeks RR, Obiakor FE, Algozzine B. Multicultural issues in Autism. J Autism Dev Disord 2004;34:211-222.  Back to cited text no. 5
    
6.
Brezis RS, Weisner TS, Daley TC, Singhal N, Barua M, Chollera SP. Parenting a child with autism in India: Narratives before and after a parent-child intervention program. Cult Med Psychiatry 2015;39:277-298.  Back to cited text no. 6
    
7.
Ciero FR, Pfadt A. Investigation of a reinforcement-based toilet training procedure for children with Autism. Res Dev Disabil 2002;23:319-331.  Back to cited text no. 7
    
8.
Williams PG, Dalrymple N, Neal J. Eating habits of children with Autism. Pediatr Nurs 2000;26:259-264.  Back to cited text no. 8
    
9.
Schaff RC, Cohen ST, Johnson SL, Outten G. The everyday routines of families of children with Autism: Examining the impact of sensory processing difficulties on the family. Autism 2011;15:373-389.  Back to cited text no. 9
    


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