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Comparison of Self-Care Performance between Children with Down Syndrome and Typical Children
Perbandingan Prestasi Penjagaan Diri di antara Kanak-kanak Sindrom Down dan Kanak-kanak Biasa
DZALANI HARUN, STELLA SIA SZE LING & NOR AFIFI RAZAOB
ABSTRACT
Down Syndrome (DS) is a genetic disorder due to an extra copy of chromosome 21. It is consistently associated with delayed motor development, reduced cognitive abilities and certain medical conditions which affect the self-care performance of an individual with DS. Knowledge regarding the functional status of children with DS compared to typical children in Eastern countries, which have different cultures from Western countries, is still limited. Thus, this study aims to determine the self-care performance of children with DS, caregiver assistance level, and modification frequency required compared with the typical children. The differences in performance of children with DS based on gender and age are also investigated. Data was collected using the Pediatric Evaluation of Disability Inventory (PEDI) and participant’s sociodemographic data form. One hundred and two participants consist of caregivers of children with DS (n=51) and typical children (n=51) from Kiwanis Down Syndrome Foundation centres and preschools in the Klang Valley participated in this study. Results showed that the overall self-care performance of children with DS is lower than typical children, t(67.547)=-13.563, p<0.0001. There is considerable variation in the assistance needed by children with DS in self-care activities compared to typical children. However, a majority do not require modification or only require child-oriented modification. Besides, girls with DS and the 6-year-old demonstrate greater self-care performance than boys, t (49)=2.216, p=0.031 and F(2, 48)=6.828, p=0.002, respectively. In conclusion, as in other countries, children with DS in Malaysia show lower self-care performance than typical children. Early interventions that focus on functional skills training is critical to improving their functional skills. Further study is needed to determine factors that influence the functional status of children with DS in Malaysia.
Keywords: Down Syndrome, self-care, performance, children, caregivers
ABSTRAK
Sindrom Down (DS) adalah gangguan genetik disebabkan oleh tambahan salinan kromosom 21. Ia secara konsisten dikaitkan dengan perkembangan motor lambat, kemampuan kognitif yang rendah dan kondisi perubatan tertentu yang mempengaruhi prestasi penjagaan diri individu DS. Pengetahuan mengenai status fungsian kanak-kanak DS berbanding kanak-kanak biasa di negara timur, yang mempunyai budaya yang berbeza dari negara barat, masih terhad. Oleh itu, kajian ini bertujuan untuk menentukan prestasi penjagaan diri kanak-kanak DS, tahap bantuan penjaga dan frekuensi pengubahsuaian yang diperlukan berbanding kanak- kanak biasa. Perbezaan prestasi kanak-kanak DS berdasarkan jantina dan umur turut dikaji. Data dikumpulkan menggunakan Pediatric Evaluation of Disability Inventory (PEDI) dan borang sosiodemografi peserta. Seratus dua peserta terdiri daripada penjaga kanak-kanak DS (n = 51) dan kanak-kanak biasa (n = 51) dari pusat Yayasan Kiwanis Down Syndrome dan prasekolah di Lembah Klang telah mengambil bahagian dalam kajian ini. Hasil kajian menunjukkan bahawa prestasi penjagaan diri keseluruhan kanak-kanak DS lebih rendah daripada kanak-kanak biasa, t (67.547) = - 13.563, p <0.0001). Terdapat banyak variasi dalam bantuan yang diperlukan oleh kanak-kanak DS dalam aktiviti penjagaan diri berbanding dengan kanak-kanak biasa. Walau bagaimanapun, majoriti tidak memerlukan pengubahsuaian atau hanya memerlukan pengubahsuaian berorientasikan kanak-kanak. Selain itu, kanak-kanak DS perempuan dan kanak-kanak berusia 6 tahun menunjukkan prestasi penjagaan diri yang lebih tinggi daripada kanak-kanak lelaki, t (49) = 2.216, p = 0.031 dan F (2, 48) = 6.828, p = 0.002 masing-masing. Kesimpulannya, seperti di negara lain, kanak-kanak DS di Malaysia menunjukkan prestasi rawatan diri yang lebih rendah berbanding kanak-kanak biasa. Intervensi awal yang menumpukan pada latihan kemahiran fungsian sangat penting untuk meningkatkan kemahiran fungsian kanak-kanak DS. Kajian lebih lanjut diperlukan untuk menentukan faktor yang mempengaruhi status fungsian kanak-kanak DS di Malaysia.
Kata kunci: Sindrom Down, penjagaan diri, prestasi, kanak-kanak, penjaga,
INTRODUCTION
Down Syndrome (DS) is the most common chromosomal abnormality among live births due to an extra copy of chromosome 21 (Baum et al.
2008). Ten in 10,000 live births was born with DS worldwide (Weijerman & De Winter 2010). In Malaysia, the prevalence of DS is not well published. An earlier study in the largest government hospital reported that the incidence of 1:959 livebirth and female babies with DS was more than the male baby (Hoe, Boo & Clyde 1989). Apart from having physical features such as a broad face, flat nasal bridge, up-slating palpebral fissures and protruded tongue, most of them also suffer from a medical condition. The condition includes congenital heart defects, gastrointestinal or other disorders that require intensive treatment at a hospital (Baum et al. 2008). In addition, infants and young children with DS often experience delayed motor and cognitive development (Volman et al.
2007).
In the context of occupational therapy, basic activities of daily living, as known as self-care activities, is defined as activities oriented toward taking care of one’s own body (AOTA 2014). A child's self-care performance level is always a concern, especially in the field of occupational therapy. Successful participation in self-care activities is essential for a child’s daily functioning and balanced development (Chien et al. 2014).
There were few studies regarding the functional performance of children with DS conducted in other countries, especially western countries. They reported having limitations in functional activities, mainly in the area of self-care and social function domain. In addition, inter-individual variability was large, particularly for the self-care domain (Volman et al. 2007). Mancini et al. (2003) compared the functional performance of children with DS, and typical children aged 2 and 5 reported a significant difference in self-care performance between these groups at aged 5. Specifically, most of them showed more difficulties in performing activities, including toileting, bladder management, and dressing, which fine motor skills are very much needed (Dolva et al. 2004; Frank & Esbensen 2015).
Concerning the level of assistance provided by caregivers to children with DS, Dolva et al. (2004) reported a considerable variation in almost all the self-care activities. The 5-year-old children with DS showed considerable help for bowel and bladder management (Dolva et al. 2004). Another study by Lin et al. (2015) analysed the level of assistance by dividing the subjects according to their age groups. The group consisted of them aged 3 to 5 years old; more than 80% of them require help in self-care activities except feeding. Next, for the age group of 6 to 10 years old, more than 50%
of them require help in bathing, grooming and toileting. They had the greatest independence in feeding activity (Dolva et al. 2004; Lin et al. 2015).
In terms of modifications needed, there is a lack of study found reporting on this aspect. The study by Dolva et al. (2014) showed that the children use only standard child equipment such as step stool during toileting activity.
Apart from that, previous studies showed no statistically significant difference between genders in self-care performance (Dolva et al. 2004; Lin et al. 2015). The self-care performance level was correlated positively with age, and the highest correlation was seen in bathing and grooming (Lin et al. 2015).
Self-care ability is a critical issue among children with DS. However, most of the relevant studies were done in western countries. Culture, beliefs and values were found could influence individual self-care performance and functional independence (Jaarsma et al. 2017; Santamaría- Vázquez & Guijo-Blanco 2016). Knowledge about children with DS self-care performance in countries with cultural diversity like Malaysia, specifically on the assistance level and modification required by the child, is still not well documented. Hence, this study aims to determine the self-care performance of children with DS, caregiver assistance level, and modification frequency required compared with the typical children. The differences in performance of children with DS based on gender and age are also investigated.
MATERIALS AND METHODS
PARTICIPANTS
A total of 102 caregivers of children aged 4 to 6 took part in this study. Half of them were caregivers of children with DS, and another half were caregivers of typical children. Participants, which were the primary caregivers (a person who look after the child most of the time, including parents, grandparents and others) on behalf of children with DS and typical children were recruited with the help of administrators and teachers at centres for Down Syndrome and preschools within Klang Valley area respectively.
The researchers explained the procedures to fill in the study questionnaires to the participants. Ethical approval was obtained from UKM Research Ethics Committee (UKM PPI/111/8/JEP-2016-685).
Written informed consent was given by all the participants to take part in the study.
INSTRUMENT Participant’s Sociodemographic Form
Participants' sociodemographic form was used to obtain the primary caregivers and their children's basic information. The first part of the form is about primary caregiver details, including age, gender, race, education level, and occupation. The second part of the form is about their children's date of birth, gender, and general health status.
The Pediatric Evaluation of Disability Inventory (PEDI)
PEDI was used to gain information regarding the self-care performance of both children with DS and typical children.PEDI is an instrument used to evaluate children's functional skills aged 6 months to 7.5 years old according to three domains: self- care, mobility, and social function (Haley &
Andrellos 1992). However, this study only focused on the self-care domain. PEDI form consisted of three parts, i.e., Functional Skills, Caregiver Assistance and Modifications. The first part (Functional Skills) consists of 73 items related to self-care activities: feeding, toothbrushing, hair brushing, nose care, bathing, upper and lower body garment, toileting, and bladder and bowel control.
One mark is given for every item the child can perform, and no mark is given if the child cannot perform. For Part 2 (Caregiver Assistance), a 5- point Likert scale is used to rate the level of assistance needed by the child while performing self-care activities from 0 for total assistance to 5 for independent. For Part 3 (Modifications), participants had to answer whether their children require any modifications such as child-oriented modifications, rehabilitative equipment and extensive modifications. A brief explanation was attached in order to assist participants in answering Part 2 and 3. PEDI asses the child’s self-care performance using simple English questions that make participants answer it without difficulty.
DATA ANALYSIS
Data were analysed using the Statistical Program of Social Sciences (SPSS) software for Windows version 22. The self-care performance of children with DS and typical children, the assistance level, and modification frequency required in performing self-care activities were analysed descriptively.
The differences in self-care performance scores between children with DS and typical children were determined using an independent t-test.
Mann-Whitney U was used to determine the differences based on domains. The differences in self-care performance of children with DS based on gender were analysed using the independent t-test and one-way ANOVA test for the differences based on three age categories.
RESULTS
SELF-CARE PERFORMANCE OF CHILDREN WITH DOWN SYNDROME AND TYPICAL
CHILDREN
Table I showed the participants' sociodemographic characteristics. Most primary caregivers were mothers (76.95% for children with DS and 80.8%
for typical children) and Malay (60.8% for DS and 64.7% for typical children). Most of the children with DS caregivers (60.8%) were not working/housewives, whereas the typical children’s caregivers were working full time (80.4%). As for the children, there was an almost equal number of male and female children with DS (26 and 25 respectively) and slightly more male in typical children (54.9%) compared to female.
TABLE 1 Sociodemographic characteristics of the participants (n=102)
Characteristics DS Typical
n % n %
PARENTS/CAREGIVER Age group
20-39 15 29.4 43 84.3
40-6 35 68.6 8 15.7
>65 1 2.0 0 0
Median (IQR) 42(7-45) 36(33.25-38)
Relationship
Mother 39 76.5 41 80.4
Father 8 15.7 10 19.6
Caregiver 4 7.8 0 0
Race
Malay 31 76.5 33 64.7
Non-Malay 20 39.2 18 35.3
Educational Level
Primary 3 5.9 1 2.0
Secondary school 15 29.5 11 21.6
High School/Diploma 18 35.3 19 37.3
Tertiary (Bachelor & Master degree) 15 29.4 20 39.2 Occupation
Working 20 39.2 41 80.4
Not working 31 60.8 10 19.6
CHILDREN Age
4 19 37.3 15 29.4
5 17 33.3 19 37.3
6 15 29.4 17 33.3
Gender
Female 25 49.0 23 45.1
Male 26 51.0 28 54.9
DS= Down Syndrome, n=number, %= Percentage
Table 2 showed the frequencies, mean score and standard deviation of functional performance of children with DS and typical children on self-care domains. For the analysis purpose, 73 items in the first part of PEDI were re-categorized into five domains: feeding, grooming, bathing, dressing, and toileting. Findings indicate that, on average, the mean overall score obtained by children with DS was (M=43.39±11.18) while typical children scored (M=66.74±4.76).
CAREGIVER ASSISTANCE LEVEL IN SELF- CARE ACTIVITIES
Table 3 displayed the frequencies, mean score and standard deviation of caregiver assistance required by children with DS and typical children on eight self-care domains, i.e., feeding, grooming, bathing, dressing the upper body, dressing the lower body, toileting, bowel and bladder management.
Generally, variations were observed in the assistance level needed by children with DS in every self-care domain. On the other hand, most of the typical children were independent, and if any assistance was needed, the level was only up to supervision and minimal assistance.
TABLE 2 Scores for functional performance of children with Down Syndrome and typical children on self- care domains (n=102)
DS=Down Syndrome, f=frequency, SD= standard deviation
Self-Care Domain Score Mean±SD
Unable (0) Able (1)
DS f(%)
Typical f(%)
DS f(%)
Typical f(%)
DS Typical
Feeding 154(21.6) 40(5.6) 560(78.4) 674(94.4) 10.98±2.48 13.22±0.97 Grooming 224(31.4) 66(9.2) 490(68.6) 648(90.8) 9.61±2.11 12.71±1.29
Bathing 167(32.7) 30(5.9) 343(67.3) 480(94.1) 6.73±2.22 9.41±1.08
Dressing 522(51.2) 133(13.0) 498(48.8) 887(87.0) 9.76±3.44 17.39±2.51 Toileting 443(57.9) 64(8.4) 322(42.1) 701(91.6) 6.31±4.68 13.75±1.34 Overall functional
performance
1510(40.6) 333(8.9) 2213(59.4) 3390(91.1) 43.39±11.18 66.47±4.76
TABLE 3 Scores for caregiver assistance required by children with Down Syndrome and typical children on self-care domains (n=102)
Self-Care Domain Score
Total Assistance (0)
Maximal Assistance (1)
Moderate Assistance (2)
Minimal Assistance (3)
Supervision (4)
Independent (5) DS
f(%)
Typical f(%)
DS f(%)
Typical f(%)
DS f(%)
Typical f(%)
DS f(%)
Typical f(%)
DS f(%)
Typical f(%)
DS f(%)
Typical f(%)
Feeding 1(2.0) 0(0) 3(5.9) 0(0) 7(13.7) 0(0) 11(21.6) 3(5.9) 16(31.4) 12(23.5) 13(25.5) 36(70.6)
Mean±SD 3.51±1.29 4.65±0.59
Grooming 0(0) 0(0) 4(7.8) 0(0) 17(33.3) 0(0) 17(33.3) 6(11.8) 12(23.5) 24(47.1) 1(2.0) 21(41.2)
Mean±SD 2.78±0.97 4.29±0.67
Bathing 0(0) 0(0) 14(27.5) 0(0) 12(23.5) 0(0) 11(21.6) 11(21.6) 13(25.5) 18(35.3) 1(2.0) 22(43.1)
Mean±SD 2.51±1.21 4.2±0.78
Dressing Upper Body 0(0) 0(0) 11(21.6) 0(0) 16(31.4) 1(2.0) 15(29.4) 8(15.7) 4(7.8) 16(31.4) 5(9.8) 26(51.0)
Mean±SD 2.53±1.21 4.31±0.81
Dressing Lower Body 0(0) 0(0) 9(17.6) 0(0) 15(29.4) 0(0) 16(31.4) 9(17.6) 8(15.7) 17(33.3) 3(5.9) 25(49.0)
Mean±SD 2.63±1.13 4.31±0.76
Toileting 3(5.9) 0(0) 16(31.4) 0(0) 16(31.4) 1(2.0) 4(7.8) 14(27.5) 10(19.6) 15(29.4) 2(3.9) 21(41.2)
Mean±SD 2.16±1.33 4.10±0.88
Bladder Management 3(5.9) 0(0) 18(35.3) 0(0) 14(27.5) 0(0) 9(17.6) 8(15.7) 3(5.9) 22(43.1) 4(7.8) 21(41.2)
Mean±SD 2.06±1.32 4.25±0.72
Bowel Management 3(5.9) 0(0) 17(33.3) 0(0) 14(27.5) 0(0) 9(17.6) 8(15.7) 6(11.8) 22(43.1) 2(3.9) 21(41.2)
Mean±SD 2.08±1.26 4.25±0.72
Total Assistance Level 10(2.5) 0(0) 92(22.5) 0(0) 111(27.2) 2(0.5) 92(22.5) 67(16.4) 72(17.6) 146(35.8) 31(7.6) 193(47.3)
Mean±SD 20.25±7.65 34.39±4.50
DS= Down Syndrome, f=frequency, % percentage, SD= standard deviation
FREQUENCY OF MODIFICATION REQUIRED BY CHILDREN WITH DOWN SYNDROME Table 4 showed the frequencies of modifications required by children with DS in the same domains used for scoring caregiver assistance level. Overall,
children with DS only require child-oriented modifications such as small spoon and fork, diapers, napkins and potty chairs. Apart from that, two children require extensive modification, which was Ryle's tube during feeding activity.
TABLE 4 Modifications needed by children with Down Syndrome (n=102)
Self-Care Domain Modification Frequency
None Child-oriented Modification
Rehabilitative Equipment
Extensive Modification
f % f % f % f %
Feeding 23 44.2 27 51.9 0 0 2 3.8
Grooming 2 3.8 50 96.2 0 0 0 0
Bathing 44 84.6 8 15.4 0 0 0 0
Dressing Upper Body 48 92.3 4 7.7 0 0 0 0
Dressing Lower Body 49 94.2 3 5.8 0 0 0 0
Toileting 23 44.2 29 55.8 0 0 0 0
Bladder Management 10 19.2 42 80.8 0 0 0 0
Bowel Management 11 21.2 41 78.8 0 0 0 0
Overall Modification 210 50.5 204 49.0 0 0 2 0.5 DS= Down Syndrome, f=frequency, % percentage
COMPARISON OF SELF-CARE
PERFORMANCE BETWEEN CHILDREN WITH DOWN SYNDROME AND TYPICAL
CHILDREN
The finding indicates a significant difference in overall self-care performance between children with DS and typical children, t(67.547)=-13.563, p<0.0001. The effect size (Cohen 1992) was large (Cohen’s d=2.69). Children with DS showed lower
self-care performance as compared to typical children.
The study compared the self-care performance of these two groups of children according to different self-care domains. As presented in Table 5, children with DS performed significantly poorer than typical children in the five self-care domains;
feeding, grooming, bathing, dressing and toileting.
The differences were significant at p=value <0.001.
TABLE 5 Comparison of self-care performance between children with Down Syndrome and typical children according to domains (n=102)
Variable Median (IQR) z score p value
DS Typical
Feeding 12(10-13) 14(13-14) -5.984 *<0.001
Grooming 9(8-11) 14(13-14) -6.776 *<0.001
Bathing 7(5-8) 10(9-10) -6.448 *<0.001
Dressing 9(7-12) 18(16-20) -7.845 *<0.001
Toileting 6(2-10) 14(13-15) -5.382 *<0.001
*p<0.01, DS= Down Syndrome DIFFERENCES IN SELF-CARE PERFORMANCE AMONG CHILDREN WITH
DOWN SYNDROME BASED ON GENDER AND AGE
The overall self-care performance among children with DS was compared according to gender and age, respectively. The analysis revealed a
significant difference in self-care performance between the gender groups t(49)=2.216, p=0.031.
The effect size (Cohen 1992) was moderate (Cohen’s d=0.622). In the DS group, girls showed higher overall performance levels as compared to the boys. Regarding the differences in overall self- care performance according to age, the analysis showed a significant difference in overall self-care
performance, [F(2, 48)=6.828, p=0.002]. The data was further analysed using post-hoc analysis and Gabriel procedure. The result showed that the self- care performance of children with DS aged 6 years old (51.00±8.43, p=0.002) was significantly greater than those aged 4 years old (38.26±9.76). The effect size (Cohen 1992) was large (Cohen’s d=1.057). However, the differences between the 4 and 5-year-old (p=0.526) and the 5 and 6-year-old (p=0.058) were not significant.
DISCUSSION
Generally, typical children in this study displayed a higher level of self-care performance when compare with children with DS. However, when taking a closer look into the self-care performance following the items in PEDI, more than half of them were unable to perform self-care tasks such as tying shoelaces, managing tangles/parting hairs and wiping themselves thoroughly after bowel movements. This situation may happen as these tasks were beyond their abilities, especially those aged 4 and 5. Fifty percentile of typical children master the skill oy tying shoelaces by the age of 6 can wipe themselves thoroughly after bowel movement within the age range of 4 (Gerber, Wilks and Erdie-Lalena 2010). Typical children learns the skill for combing hair and managing tangles from 6 to 7 years old (Haley & Andrellos 1992;
Gerber, Wilks and Erdie-Lalena 2010). The ability to manage tangles and part hairs may also be affected by gender factors in which boys usually keep short hairs and thus do not have the chance to learn the skill.
While comparing the self-care performance of typical children to children with DS, the differences between these two groups were significant.
Children with DS showed a lower level of self-care performance than typical children in terms of feeding, grooming, bathing, dressing and toileting.
The results from this study support the study in the United States by Frank and Esbensen (2015), which found that children with DS learnt dressing and toileting at a later age than their peers.
When the ability of children with DS were analysed by referring to PEDI items, the most problematic tasks for them require motor and praxis skills and cognitive skills (Dolva et al. 2004;
Fidler et al. 2005; Volman et al. 2007). Deficits in fine motor skills significantly affect their ability in dressing management especially fastening and tying shoelaces. Limitation in praxis leads to difficulty in the planning and sequencing movements and thus affects their overall performance in activities of daily living (Fidler et al. 2005). Difficulty in grooming, toileting, management of bowel and bladder was probably due to deficits in cognitive skills, especially body
awareness. Besides, delayed oral motor development and being selective to food textures, which are specific characteristics of children with DS, may lead to difficulty in feeding activity (Field et al. 2003).
With regard to level of caregiver assistance required, overall, typical children were able to be independent or only require supervision from their caregivers in all the self-care domains. According to Frank and Esbensen (2015), typical children are independent in feeding activity within the age range of 36 to 48 months, 3 to 4 years old. They can manage their clothing independently, including fastening at 4 to 5 years old. On the other hand, the level of assistance children with DS need for every self-care domain is varied. Children with DS required assistance at different levels for all the domains except feeding. Feeding was the domain at which the level of assistance needed was the lowest, which was from minimal assistance to independence. This finding supports Dolva et al.
(2004), who found that children with DS are most independent in feeding activity. A study by Lin et al. (2015) also showed that the number of children with DS who needed assistance during feeding was the least compared to other domains. However, in this study, a child with DS required total assistance from a caregiver using Ryle's tube.
As shown in the study by Dolva et al. (2004), this study also found that children with DS required the most assistance in bowel and bladder management. They required moderate to maximal assistance in toileting as well. Besides, the bathing domain depicted a very different level of assistance needed with the highest number of children found in the maximal assistance level and supervision level category. The result may happen as most of them who required only supervision is 6-year-old while those who required maximal assistance are 4- year-old.
Caregiver assistance level is not only affected by child factors but also caregivers themselves.
Some caregivers may feel guilty and sorry for their children because of the diagnosis. Consequently, they overprotect and pamper their children to the extent of offering more assistance than what the children need (Gilligan 2013; Hussain, Atkin &
Waqar 2002). Apart from that, caregivers who are always impatient and quickly feel troubled may also lead to a situation in which they do not let their children try to perform self-care activities independently (Abrahams and Rowhani 2015).
As for the frequency of modification needed by children with DS, this study found that most children with DS either only required child- oriented modifications or did not require any modification for all the domains. For the feeding domain, there were two children with DS who use Ryle’s tube while feeding. This result could be because they had a problem chewing and
swallowing food with rough texture due to delayed oral motor development (Field et al. 2003).
In terms of toileting and managing bowel and bladder, most of them required child-oriented modifications such as diapers and potty chairs. The study by Frank and Esbensen (2005) reported that children with DS started toilet training about the same time as typical children. However, more than 75% of children with DS took a longer time (within the age range of 90 to 108 months) to master the skills.
Analysis on differences in self -care performance among children with DS revealed a significant difference when being compared based on their gender and age. In terms of gender, girls showed a higher level of self-care performance, especially in bowel and bladder management. The finding is similar to the study done in the western country by Leonard et al. (2002) and Dolva et al.
(2004). This indicates that gender influences self- care performance is evident in western and eastern cultures. In this study, gender difference influences self-care performance may be due to cultural factors. Among the girls involved in this study, 32 are Malays, 13 are Chinese, and one is Indian. In Malay society, the perception that household management is the primary responsibility for women still exists (Abdullah et al. 2008). The same phenomenon is found in Chinese traditions as well.
Chinese society perceives that girls are more capable of self-caring and language development, whereas boys are more muscular in mobility and manual work (Wong et al. 2002). Hence, girls are trained much earlier and better in performing self- care activities than boys.
On the other hand, when comparing their performance based on age, a significant difference in self-care performance level was found between the 4-year-old and the 6-year-old. The 6-year-old children possessed a higher level of performance than the 4-year-old in bathing, dressing and toileting. Leonard et al. (2002) also reported that children show improvement in self-care performance with increasing age. This increment may happen as a positive result of early intervention programs. Some caregivers who are proactive and aware of the need for early intervention programs will always send their children for therapy as early as possible. Apart from that, the KDSF centre, where the data of children with DS was collected, emphasizes the children's ability to perform self-care activities. The management team had included self-care activities in their curriculum. At the same time, the centre also provides occupational therapy, physiotherapy and speech therapy services for the children.
Children with DS and their families are likely to benefit from early intervention. The children showed a positive change in development, especially regarding independence, community
functioning and quality of life (Hines & Bennett 1996).
CONCLUSION
This study compared the self-care performance between children with DS and typical children. As in other countries, the self-care performance of children with DS was more unsatisfactory than that of typical children. Most typical children only required minimal assistance and supervision or were independent in every self-care activity assessed. However, children with DS showed marked variation in the level of assistance while doing self-care activities, with the majority did not require modifications or only needed child-oriented modifications. Girls with DS possessed better performance than boys with DS, and those with the age of 6 had significantly greater performance than those with the age of 4.
ACKNOWLEDGEMENT
The authors would like to thank Kiwanis Down Syndrome Foundation, Ministry of Education, Community Development Department (KEMAS), Eaglekids Kindergarten for their permission and support and all the participants for participating in this study.
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Dzalani Harun Stella Sia Sze Ling Nor Afifi Razaob
Center for Rehabilitation and Special Needs Faculty of Health Science
Universiti Kebangsaan Malaysia 50300 Jalan Raja Muda Abdul Aziz Wilayah Persekutuan Kuala Lumpur Malaysia
Corresponding author:
E-mail: [email protected] Tel: 03-92897914
Fax: -
Received: 23 August 2021 Revised: 30 September 2021
Accepted for publication: 11 October 2021
