Information needs for caring of children with special needs   Quotation 1 Diagnosis, assessment and prognosis of child’s medical condition “There are strong needs of parents for information on their children’s medical conditions as they could make a better plan for the child’s future when they have more information in hand. Having a long-term plan could reduce parental anxiety as this informs the parents on what to do next.” (Occupation therapist from a non-governmental organization) Quotation 2 Quotation 3 Quotation 4 Medical rehabilitationand psychosocial health “When we go to a private clinic, a number of dentists are needed to restrain my son, so the clinic staff can’t really help you. As for the clinic services provided by the government, we have no ideas where to find these information.” (Parent of a child with mental disability who is also representative of a non-government organization) “In addition to the pathology, parents also want to know more about their children’s psychological health but the information is not so readily available.” (Aunt of a child with hearing loss) “It would be great if more information provided about handling children who are emotionally unbalanced and/or have behavioral problems.” (Social worker from a non-government organization) Quotation 5 Quotation 6 Quotation 7 Education services (include extra-curricular activities) “Parents usually want to find out more about mainstream schools. They would like to know whether mainstream schools enroll special needs children, since which year they start taking students, how many students have special needs, schools’ reputation, would teaching being conducted in small classes?” (Educator from a volunteer service association) “Parents usually told us that their children were still waiting for placement into early training centers, at the time when they were studying kindergarten, the waiting queue is far too long. A very common question asked by parents - what else can I do during this period of waiting?” (Social worker serving parents of children with learning disabilities) Parents often ask about information on extra-curricular activities, for example finding a swimming instructor. They want to know if tutors have any experience teaching children with special needs, tuition fee, etc. (Educator from a volunteer service association) Quotation 8 Quotation 9 Community support “Regarding transports, it is actually very difficult for students with special needs to get around using buses or MTR [Mass Transit Railway], in particular for those who are in wheelchairs. Waiting for buses is troublesome too: what time will there be a bus installed with a lowered platform? Perhaps, only 2 out of 10 buses that have this facility and there are no information on the schedule of these buses.” (Educator from a special school serving children with physical disabilities) “Shopping malls may have slopes for wheelchairs, but when arrived at the doors, I have to either push or pull them. Otherwise, I have to seek help from security staff.” (Parent of a child with cerebral palsy) Quotation 10 Use of equipment and augmentative devices “Most of the information that I got were provided by the hospital or school, these information cannot be found online. For example, the information on wheelchairs that I got was provided by professionals from hospitals. It is quite hard for me to find the information from external sources. Even though there is information on the Internet, there are not too many websites which have details about where to purchase the equipment.” (Male child advocator with walking disability) Quotation 11 Quotation 12 Paths for transition care of adolescents with special needs “Parents were still worrying about their children when they grew older. They worried about children’s residential services, housing, training, etc.” (Parent of a child with mental disability who is also a representative of a non-government organization) “Because of insufficient resources, organizations could only provide limited assistance to older children with special needs upon their graduation from the school.” (Educator from a special training organization)   Experiences of obtaining and using information   Quotation 13 Information from schools and teachers “Teachers usually have not much knowledge about available courses and extra-curricular activities organized for children with special needs and could not help to retrieve those information. Also, they found it difficult to recommend suitable tutors for children with special needs, as the teachers themselves are not certain who may have relevant experience in special education.” (Educator from a special school) Quotation 14 Quotation 15 Information sharing and support from the community “Social service groups provide a place for them [parents of children with special needs] to get together. This facilitates information exchange among the parents and helps them to identify appropriate support channels. Social service groups are therefore very important.” (Sister of a child with learning disability) “We, as parents sharing similar experiences, are eager to help parents of newly diagnosed children with special needs by giving them one-to-one emotional support and providing relevant information on professional counseling services. As we are all in the same boat, we understand their feelings and our words are even more persuasive than doctors and other professionals.” (Parent of a child with Thalassemia who is also a representative of Thalassemia Association) Quotation 16 Quotation 17 Online information (Internet) “In addition to books and journals, I also use the Internet to browse through local and foreign information about disability, in particular information from well-known organizations.” (Parent of a child with mental disability who is also representative of a non-government organization) “There is just too much information available on the Internet, even if parents can find it that won’t necessarily help them. They need professional advice as well as information.” (Social worker from a non-government organization serving people with neurological impairments)   Advantages and challenges of searching and utilizing Internet information Quotation 18 Quotation 19 Advantages: Parent’s autonomy in searching information and making enquiries “Parents in the past tended to use direct hotline services. As computer technologies have become more popular over the recent years, parents often make use of the web-based platforms to ask questions and search for answers.” (Sister of a child with learning disability who is also representative of a non-government organization) “The therapist did not understand well our true needs. The information I found [through the Internet] by myself is usually more helpful as it best suits my needs.” (Male Child advocator with walking disability) Quotation 20 Advantages: Useful for decision making “The internet provides us with an easy way to look for answers to our questions regarding our child’s future education and health. By performing online searches together with my child, I could teach him with practical examples so that he could manage his own life and make decisions himself as he grows up.” (Parent of a child with cataracts) Quotation 21 Quotation 22 Advantages: Share experiences via online platforms “Parents often search information online about special schools. Discussion forums are useful for parents to learn from others who also have children studying in special schools.” (Parent of a child with autism) “A discussion forum for parents to leave their thoughts and opinions about school services in special needs would be helpful as it facilitates communication and connection with other parents.” (Social worker from a non-governmental organization serving children with autism) Quotation 23 Quotation 24 Challenges: Lacking online information searching skills “I have the knowledge and skills to use a computer. Yet, I do not know how to start the search if I need medical, educational, or other disability related information from the Internet.” (Parent of a child with cataracts) “Some parents are lack of computer skills, so they contact us directly because they hardly have experiences on Internet search.” (Senior teacher from a special school) Quotation 25 Quotation 26 Quotation 27 Challenges: Risk of misinterpretation of online information “Some parents may make the wrong interpretation of cases reported in research papers. They may over-focus on the positive aspects of the report and neglect the huge effort expended on the patient behind each impressive story. Finally, this would result in parents having a false hope.” (Sister of a child with a learning disability) “Professional information on the Internet may be too difficult for parents to understand. I think many parents have their own views/thoughts, if there’s a website which can explain the information in layman terms, maybe they can understand more about their children’s situation.” (Pediatrician specialized in neurology, developmental pediatrics and neurohabilitation) “Some organizations provide both private and public services and you have to call them up to ask about these assessments. However in the end, the information that they provide over the phone is totally different from the information provided on their websites.” (Social worker from a non-government organization) Quotation 28 Quotation 29 Challenges: Lacking special functions/features “It has been the most difficult task to help students with visual impairment to use the Internet. Our school will purchase a visual audio intelligent organizer for them, but it’s only for using in school, hence they cannot use it at home.” (Educator from a Vocational Training Institute) “The equipment assisted children with special needs for viewing computer is very expensive and cannot be brought outside the school.” (Parent of a child with Thalassemia who is also a representative of Thalassemia Association)

Table 3: Relevant quotations to support study themes.