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Parental Use of Conventional and Complementary Therapy For Autism in Jordan - ScienceDirect
Parental Use of Conventional and Complementary Therapy For Autism in Jordan - ScienceDirect
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Highlights
• There is inadequate use of conventional therapy to treat comorbidities in
children with ASD.
• Parents consult the internet, a finding that may guide future directions
towards better ways for counselling and education.
Abstract
Objective
We investigated parental use of conventional therapies and complementary and
alternative medicine (CAM) for children with autism in Jordan.
Method
This prospective cross-sectional study was conducted from February 2018 through
December 2018 at the paediatric neurology clinics of three tertiary referral hospitals in
Jordan. The accompanying parent was interviewed to complete a structured
questionnaire.
Results
274 parents were interviewed. The most common medications used were those to treat
hyperactivity (150; 54.7 %), anticonvulsants (60; 21.9 %), and sleep aids (6; 2.1 %). CAM
was used by 129 parents (47.0 %). A casein-free diet was the most commonly used dietary
modification (24; 8.7 %), while fish oil (Omega-3) was the most common supplement
used (96; 35.0 %). Hyperbaric oxygen, chelation therapy, and antifungal treatment were
also occasionally used. Higher parental education levels and access to rehabilitation
services correlated with higher CAM use (p < 0.05).
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Keywords
Autism; Children; Disabilities; Neurodevelopment; Treatment; Complementary
and alternative therapy; Conventional therapy
1. Introduction
Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by
impaired social communication and interaction and restricted and repetitive interests
and behavioural patterns.1 ASD is a common disorder.2 Its increasing prevalence
worldwide has drawn attention to the importance of early diagnosis and intervention.1,3
As no cure exists for ASD, the main current management relies on early rehabilitation
services.4 Specialized rehabilitation services for ASD are limited in many countries5 and
may take a long time before any expected improvements appear. In addition, many
children have comorbid symptoms, including hyperactivity, sleep disturbances, and
gastrointestinal complaints, which do not improve with rehabilitation alone. The
aforementioned limitations may make parents feel helpless and push them to try
anything that they think may improve their child’s condition, including complementary
and/or alternative medicine.6
CAM is defined as a group of diverse medical systems, products, and practices that are
not generally considered to be part of conventional medicine. Complementary therapies
are used in conjunction with conventional medicine, while alternative therapies are used
instead of conventional medicine.7 Several studies have shown that the use of CAM is not
uncommon by parents of children with ASD.8, 9, 10 Nevertheless, most CAM therapies
have no empirical proof of beneficial effects, and some may even be harmful.11 Thus,
clinicians treating autistic children need to be aware of what parents are trying and to
counsel them on benefits and risks.4 Although many parents do not disclose CAM use
voluntarily,12 they do respect their clinicians’ opinions and advice.13
Parental use of CAM for ASD ranges from 27 to 88%,8, 9, 10,14 and CAM practices differ
between countries. Jordan is a developing middle-income country located in the Middle
East, with many obstacles to overcome in handling the challenges of ASD. Parental use
of conventional therapies and CAM for ASD in Jordan has, to our knowledge, not been
studied before.
In this study, we investigated the use of conventional therapies and CAM for ASD in
Jordan, as well as parental satisfaction with these therapies.
2. Method
This is a prospective cross-sectional study that was carried out from February through
December of 2018 (over an 11-month period). The study took place at the paediatric
neurology clinics of three tertiary referral hospitals serving northern, central, and
southern Jordan: King Abdullah Hospital in Al Ramtha, Jordan University Hospital in
Amman, and Al-Karak Governmental Hospital in Karak.
Parents of children aged at least two years and who had been diagnosed with ASD at
least 6 months prior to start of the study were enrolled. An age-matched control group
included children with global developmental delay (GDD) and other developmental
disabilities who had also been diagnosed at least 6 months prior to the study period.
CAM therapies were grouped into dietary modifications, specific types of food added to
the child’s diet, supplements (vitamins/fish oil), hyperbaric oxygen, chelation therapy,
and antifungal medications. Religious and spiritual practices, such as removing the evil
eye, were also explored.
A five-grade Likert scale was used to measure parental satisfaction (1 – not at all
satisfied, 2 – not satisfied, 3 – neutral, 4 – satisfied, 5 – very satisfied).
The study was approved by the institutional board of Jordan University Hospital. An
informed consent form was obtained from the parents of children included in the study.
4. Results
Parents of 274 children with ASD were interviewed; most (204; 74 %) were mothers. An
age-matched control group of parents of 257 children with GDD and other
developmental disabilities were also interviewed at the same sites to compare for CAM
use.
Monthly incomes ranged from 100 to 1000 Jordanian dinars (JD) (140–1400 US dollars);
however, the monthly income of most families (197; 72 %) ranged from 300 to 500 JD
(423–700 USD). Most of the parents’ highest level of education was high school through
college or university (Table 1 shows demographics of families).
Table 1. Parental demographics of the autism and global developmental delay (GDD)
groups.
Age of parents
Father
Mother
Level of education
Number of siblings
Sex of child
Most parents consulted more than one physician for the diagnosis. Only 59 (21.5 %)
parents consulted only one doctor. The most common specialities consulted were
paediatric neurologists (223; 81.3 %), followed by paediatric psychiatrists (127; 46.3 %)
and paediatricians (87; 31.7 %).
The most common sources of parental knowledge about ASD were physicians (230; 83.9
%) and the Internet (198; 72.2 %). (Table 2 shows more sources).
Relatives 29 (10.6 %)
Friends 27 (9.9 %)
Books 18(6.6 %)
TV /radio 39(14.2 %)
Most of the parents (221; 80.6 %) noticed that their child was delayed in the first two
years of life, and most of their children (228; 83.2 %) were diagnosed with ASD <3 years
of age.
Comorbid symptoms included hyperactivity (203; 74 %), epilepsy (50; 18.2 %), anxiety
(40; 14.5 %), sleep disturbances (77; 28.1 %), delayed walking (86; 31.3 %), and harming
self or others (64; 23.3 %). Gastrointestinal complaints, including constipation (75; 27.3
%), food selection (picky eating) (145; 52.9 %), diarrhoea (20; 7.2 %), and vomiting (8; 2.9
%), were present in 177 (64.5 %) children.
Table 3. The details of reported side effects of medications used to treat hyperactivity in
22 patients.
Risperdal N Methylphenidate Atomoxetine Clonazepam Tofranil Olanzepam
of patients N of patients N of N of N of N of
14 4 patients patients patients patients
2 2
Increased 4 2 0 0 0 0
weight
Decreased 1 1 1 0 0 0
weight
Frequent falls 3 0 0 1 0 0
Constipation 2 0 0 0 0 0
Diarrhea 1 1 1 0 0 0
Headache 1 0 0 0 0 0
Enuresis 1 0 0 0 0 0
Increased 1 0 0 0 0 0
liver enzymes
Excessive 0 0 0 1 0 0
salivation
Who prescribed/advised it
Dr. 17(55.3 5(22.7 15(78.9 %) 21(95.5 77(80.4 2(1.0 %) 2(1.0 %) 2(66.7 %)
%) %) % %)
Rehab centers 4(12.5 2(9.1 %) Zero Zero 3(3.1 %) Zero Zero Zero
%)
Duration of therapy
Noticed side 4(12.5 Zero Zero 1(4.5 %) 5(5.2 %) Zero Zero Zero
effects %)
Satisfied / very 13(40.7 10(45.4 13(38.4 %) 16(72.7 62 (64.4 1 (50 %) Zero 2(66.7 %)
satisfied %) %) %) %)
4.5. CAM
CAM was used by 129 (47.0 %) parents of children with ASD compared to 97 (37.7 %) in
the control group (p = 0.03).
In the ASD group, a casein-free diet was the most common dietary modification (24; 8.7
%), while fish oil (Omega-3) was the most common supplement (96; 35.0 %). Hyperbaric
oxygen, chelation therapy, and antifungal medications were very rarely used. 43.0 % and
19.7 % of parents respectively used religious and spiritual practices. The highest level of
parental satisfaction was for the supplement category, ranging from 64.4 %–72.7 %.
Parents of children in the control group used supplements and religious and spiritual
practices with similar frequency compared to those in the ASD group; other
complementary therapies were infrequently used. (Table 5 shows the different categories
of conventional therapy and CAM used by both groups and parental satisfaction for each
category.)
Type of therapy ASD group ASD group GDD group GDD group
total 274 Satisfied /very Total 257 Satisfied /very
N(%) satisfied N(%) satisfied
Special types of food added 22 /274 (8.0 10 /22 (45.5 %) 10/257(3.9 %) 6/10 (60 %)
to diet: Most common : %)
Apart from adding specific types of food to the child’s diet, which was commonly related
to information found by parents on the Internet, the use of different modalities of CAM
by parents of the ASD group was mainly based on doctors’ advice. Most of these parents
started to use CAM between 6–12 months after their children received a diagnosis of
ASD. With dietary modifications, 4 (12.5 %) parents reported side effects of weight loss
(3) and diarrhoea (1). With fish oil, 5 (5.2 %) reported hyperactivity (2), weight gain (2) and
abdominal pain (1.) One parent reported weight gain related to vitamin B6. The most
expensive CAM modalities were hyperbaric oxygen, chelation therapy, and antifungal
medication; side effects were rarely reported. No parents reported side effects from the
other modalities used. The most common reason for parents to decide to use dietary
modifications was to decrease hyperactivity, while the most common reason for
introducing special foods was to improve brain function and gastrointestinal symptoms.
(See Table 5).
Table 6. CAM therapy and correlation with parental demographics’ and child’s
characteristics.
Level of education
Mother
illiterate + elementary 12 (41.4 %) 0.064
Father
100-300 19 (37.3 %)
>500 41 (62.1 %)
Sex of child
Female 32 (45.1 %)
Child regressed
NO 37 (39.8 %)
Hyperactivity
No 39 (54.9 %)
Sleep disorder
No 96 (48.7 %)
Constipation 0.317
Yes 39 (52 %)
No 90 (45.2 %)
Yes 66 (45.5 %)
No 63 (48.8 %)
Child verbal
No 62 (44 %)
No 22 (28.6 %)
5. Discussion
In this study, we interviewed parents of 274 children with ASD to explore their use of
conventional therapies and CAM and compared them to an age-matched group of
parents of 257 children with GDD/other developmental disabilities to compare for CAM
use.
Most of the parents of the children with ASD noticed early that their child was delayed,
and most of these children were diagnosed by three years of age compared to an average
age of diagnosis at 3.8 years in the study by Masri et al six years ago.15 Earlier
recognition and diagnosis indicate increased awareness about ASD among parents and
physicians in Jordan. Most of the parents are well educated, and although most
depended on their child’s physician as their source of knowledge about ASD, the
majority have consulted more than one physician and/or the Internet. This pattern
raises an urgent need for physicians to improve their methods of communication with
parents, and to provide parents with reliable Internet sources for their further education
about ASD.
Parents often used rehabilitation services to improve core symptoms of ASD; however,
satisfaction was generally low. Exploration of the details of these services is beyond the
scope of this study.
Many parents in our study had decided to use CAM to ameliorate these comorbidities,
as many people believe that it is effective for treatment of hyperactivity and
gastrointestinal function and for improvement of cognition.
Around half of the children with ASD in our study received at least one form of CAM.
The most common CAM therapy used was supplements; this category had the highest
parental satisfaction rate. Our results are consistent with previously published data on
CAM use in ASD.21 In their recent systematic review in 2017, Höfer et al found that the
prevalence of CAM use in ASD ranged from 28 % to 95 % (median: 54 %), Special diets
or dietary supplements (including vitamins) were the most frequently used therapies.21
Parents most commonly used supplements and dietary modifications, while hyperbaric
oxygen chelation therapy, and antifungal treatment were used rarely. This pattern may
reflect physician counselling in addition to parental financial status, as the latter
therapies are expensive and are not usually covered by medical insurances.
Compared to the ASD group, parents of children in the control group also used CAM,
though at a lower rate (37.7 %).
While families usually use CAM due to the lack of availability of conventional services,5
in our study, parents who were using rehabilitation services were found to be more
likely to use CAM. This finding may be explained by the fact that they were not satisfied
about the services provided and thus were looking for other options.
Neither income nor comorbidities affected CAM use. Results from previously published
studies have shown that children with behavioural problems and comorbid
gastrointestinal complaints were the most likely to be placed on special diets.8
7. Conclusion
Findings from this study demonstrated inadequate use of conventional therapies to
treat comorbidities in children with ASD in Jordan; that CAM use in Jordan is not
uncommon and mainly consists of the use of multivitamins and fish oil; and that
parents do listen to doctors but also consult the Internet – a finding that may guide
future directions towards better ways for counselling and education.
Ethical approval
“All procedures performed in this study were in accordance with the ethical standards of
the institutional review board of Jordan University Hospital and with the 1964
Declaration of Helsinki and its later amendments.”
Consent
A written informed consent form was obtained from all parents prior to the beginning
of the study.
Acknowledgement/funding
This study was supported by a grant from the University of Jordan.
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