EHDI Services should be accessible! caregivers’ expectations of EHDI services in South Africa

Figures & data

Table 1. Participants caregivers’ socio-demographic profile.

Heading	Sub-heading	Participants (N)
Gender	Male	0
	Female	9
Age	25–30	1
	31–36	3
	37–42	3
	43–48	2
Ethnicity	Black	5
	Coloured (Mixed race)	1
	Indian	1
	White	2
Marital status	Married	6
	Single	3
Highest qualification	Grade 11 or lower (Std 9)	2
	Grade 12 (Matric)	3
	Post-Matric Diploma	3
	Baccalaureate Degree(s)	0
	Post Graduate Degree(s)	1
Employment status	Employed	5
	Self-employed	2
	Student	0
	Unemployed	2
Number of children with hearing loss	One	7
	Two	2

Table 2. Demographic and audiological profile of children who are DHH.

Child	Race	Gender	Home Language	Degree of hearing loss	Age when hearing loss was diagnosed (in months)	Age when fitted with amplification device(s) (in months)	Age when EI was initiated (in months)	Type of amplification device(s)	HCF where EHDI was received	Distance to HCF	Risk factors	Circumstances that lead to the diagnosis
Thabo*	Black	Male	English & SASL	Severe	18	19	22	Bilateral cochlear implants	Private sector	30 km	Chronic otitis media	Thabo*'s preschool teacher noticed that he does not always respond when called and prompted his mother to assess his hearing.
Lerato*	Black	Female	Sesotho	Severe	24	26	24	Hearing aid & Cochlear implant	Public sector	48 km	Prematurity	During the immunisation visits at the clinic, Lerato*'s mother noticed that other children Lerato*'s age had started talking while Lerato* was only using gestures to communicate. The nurses at the clinic dismissed the mother's concerns, but the mother's employer then urged her to take Lerato to the hospital for a hearing evaluation.
Karabo*	Black	Male	Setswana	Moderately severe	4	5	4	Hearing aid & Cochlear implant	Public sector	28 km	Waardenburg syndrome (white forelock, 1½ blue eye, ½ brown eye)	Karabo*'s sister was diagnosed with a hearing loss and his mother insisted that his hearing be evaluated as well.
Dimpho*	Black	Female	Setswana & SASL	Profound	20	24	27	Hearing aid & Cochlear implant	Public sector	28 km	Prematurity, NICU, Waardenburg syndrome (white forelock, 1 blue eye)	On a day where there was thunder and lightning, Dimpho*'s family was frighted by the thunder, except Dimpho*. Her uncle was concerned about her lack of reaction to the thunder and urged her mother to take her to the hospital. The nurses at Hospital X dismissed the mother's concerns and she eventually went tot Hospital W for a hearing assessment.
Sizwe*	Black	Male	Sepedi	Severe	18	18	18	Bilateral hearing aids	Private sector	<3 km	–	The paediatrician referred Sizwe* to the Occupational Therapist (OT) due to delayed developmental milestones because he was not crawling at 15 months. The OT then referred him to the Speech Therapist because he was not talking yet. The Speech Therapist then referred him to the audiologist for a hearing evaluation.
Andrew*	Indian	Male	English	Severe	27	27	27	Bilateral hearing aids	Private sector	<5 km	Chronic otitis media	Teacher at Andrew*'s play school noticed that he is not able to follow instructions if the teacher is standing behind him. Andrew*'s mother had also had similar suspicions, but the paediatrician dismissed the mother's concerns. The mother eventually found an Audiologist to assess Andrew*'s hearing.
Paige*	Indian	Female	English	Severe	6	6	6	Bilateral hearing aids	Private sector	<5 km	–	Paige*'s brother was diagnosed with hearing loss and her parents insisted that her hearing be assessed as well.
Josh*	White	Male	Portuguese	Moderately severe	22	23	24	Bilateral cochlear implants	Private sector	<5 km	–	Josh*'s mother raised concerns with various doctors that her son can hear her sometimes, but not all the time. All the doctors dismissed her concerns. Eventually one doctor contacted an Audiologist during Josh*'s consultations based on the mother's concerns.
Boikanyo*	Black	Female	Setswana	Profound	14	20	24	Hearing aid & Cochlear implant	Private sector	26 km	Jaundice, NICU	Boikanyo* mother started having concerns when Boikanyo*'s twin sister started talking and she didn't. She also did not respond to noise like a lid falling on the ground. Her mother then took her to an Audiologist.
Zack*	White	Male	Afrikaans	Profound	24	26	26	Bilateral cochlear implants	Private sector	77 km	–	Zack*'s mother suspected that he may be ‘deaf’ when he did not start speaking at 12 months, but it took her 6 months to get an appointment with an audiologist and it took 6 appointments for his mother to accept the diagnosis and start with intervention.
Mandla*	Black	Male	Sepedi	Moderately severe	30	36	36	Bilateral cochlear implants	Private sector	<5 km	NICU	Mandla*'s hearing was screened at birth and the results were normal. But at 24 months he started ‘not listening’ when spoken to and would bite if people did not understand when he was trying to communicate. His hearing was later screened again at preschool and he was referred to the Ear-Nose-Throat Specialist and Speech Therapy becasue his pseech was delayed. There was no improvemnt with this intervention, so the Speech Therapist referred him to an Audiologist.

Figure. 1. Themes and sub-themes that emerged from the narrative interviews.

Table 3. Themes, Sub-themes and corresponding quotations

Themes	Sub-themes	Quotes
Expectations of the EHDI process	Early detection of hearing loss	‘ … so, I think if we went for cochlear implant, for grommets implant twice. I mean he was not even a year and nobody picked that … nobody picked it up. Even the ENT, we see him for a whole year. He didn’t pick it up.’ (CG 1)
		‘If they had picked it up earlier, … He would have also been able to speak nicely.’ (CG 1)
		‘Why was it not diagnosed at least in the first 6 months he was born?’ (CG 1)
		‘When I asked the ‘sister’[nurse] … . this child is almost 2 years, why is she not talking … . She said I also don’t know. I don’t know what to say’ (CG 2)
		‘ … [the second nurse] said … maybe after she turns 3 because the card shows that [the child must start talking] from 2 to 3 years. Maybe after she turns 3, we can see if there is a problem.’ (CG 2)
		‘The clinics … they are the ones that are supposed to pick up that the child is deaf. They do tests, but they don’t check ears.’ (CG 3)
		‘We went to Hospital X, but they did not pick up the she was deaf.’ (CG 3)
		‘I had taken him to the paediatrician with concerns [about delayed speech development] but she basically did a normal tympanogram and she said she did not have any concerns about his language development, because at that point, around 18 months his speech development was slower than what I had expected.’ (CG5)
		‘It took at least 6-9 months for me to get an appointment at that point in time.’ (CG 8)
	EHDI services should be accessible	‘None of the doctors were like close by where we go. They always refer us further away.’ (CG 1)
		‘Most of the services were here in Area P and Area Q … but now everything is basically in Area R right there by the school.’ (CG 6)
		‘We had to go everyday through to Area R and I stay in Area T, so it was quite a road to travel. I would drive 350 km a day to get him to talk.’ (CG 8)
		‘If we continue with speech therapy then, his speech would have been much better. He would have been able to speak, but because of financially and because nobody could refer us closer … ’ (CG 1)
		‘In terms of affording a hearing aid and the fact that technology is changing every few years. For 2 [hearing] aids it's 55 000, Sarah’s* is sitting at 30 (000), I think. Both of them have FM systems that’s 30 000 each. So, hearing aids alone, and their devices alone exceed 100 000 rands. Then you also have to think about moulds, and with a growing child, you have to, especially from that like birth to 6 years, you have to change moulds every 6 months. Medical aids don’t cover moulds at all. Even with us on comprehensive medical aid.’ (sic) (CG5)
		‘It's not pocket change that we gonna throw in, and we are working one person’s salary here because I don’t work because of my son’. (CG 6)
		‘I took her to private speech therapy with the medical aid from crèche, but the speech therapy was also a lot of money that they were claiming from the medical aid, so the medical aid got depleted. So, it was not working out for me as well.’ (CG 7)
		‘Thank you, Jesus, that we were able to fund a lot of this ourselves. It cost us moving house and to pay for the first op, you know. So, a lot we had to do out of our own.’ (CG 8)
		‘We wrote to medical aid because medical aid didn’t want to pay and all that. But at last, they did do it with motivational letters and report from the audiologist.’ (CG 9)
		‘At the time, they didn’t have Black speech therapists at Hospital W, mostly it was White or Indians … so they should try to make sure that each hospital has 3-4 Black therapists … so they can help the person in their language.’ (CG 3)
Expectations of the outcomes of EHDI services	Age-appropriate acquisition of spoken language	‘And then the hearing aids are going to help her to hear … but sometimes when you talk to her … nothing. Even though she is wearing them.’ (CG 2)
		‘He made it so easy to say, don’t worry, he is gonna hear. He’s gonna get a cochlear implant, but it wasn’t easy. It was, oh a process that we went through.’ (CG 1)
		‘ … he just can’t speak, but he can hear us.’ (CG 4)
		‘But the communication is, its ok. It’s not 100% where we want it.’ (CG 1)
		‘When I was at Hospital W, they showed me another child with the same problem as Lerato and se could talk. When I saw her, I realised that my child can also be helped … one day she can talk.’ (CG 2)
		‘Karabo* received the cochlear implant when he was still young so he developed speech normally.’ (CG 3)
		‘Even now he [Karabo*] always come home with new words. His English is progressing every day.’ (CG 3)
		‘Because she [Dimpho*] was fitted with the cochlear implant late, and has a lot of other difficulties, she did not develop speech as we had expected.’ (CG 3)
		‘When she went to LSEN School 1, she adjusted so quickly to Sign Language.’ (CG 3)
		‘She uses both Sign Language and speech, but her speech is low [poor].’ (CG 3)
		‘It’s going well, but I think like LSEN School 6 they are encouraging him to sign and speak. But it seems like he prefers to sign.’ (CG 4)
		‘Once he was in LSEN School 2 we put him there. Within 4 months, this child started like booming with talking.’ (CG 6)
		‘He is still behind on his speech, there is still a big gap … ’ (CG 6)
		‘She [Paige*] hasn’t had an issue in terms of language gaps, not as severe. We aided her very quickly, so she hasn’t had any issues with language development or anything like that.’ (CG 5)
		‘His [Andrew*] pronunciation is still what he struggles with. He has a lateral ‘s’.’ (CG 5)
		‘But we still have a lot of challenges. He [Andrew*] has group-facilitated therapy sessions for social skills at school.’ (CG 5)
		‘It’s just those high sounds like ‘s’ and ‘f’ that he can’t pronounce very well.’ (CG 9)
	Mainstream education	‘We also though that maybe after that process, the speech therapy … is gonna help … he will be able to go to normal things, mainstream school.’ (CG 1)
		‘I used to wonder which school she was going to go to … . I would ask myself if she will be able to go to school. And I would lose hope that there is a school she can go to.’ (CG 2)
		‘Even at the hospital they would say, you see how your child is, she doesn’t need a normal school. She must get a special school.’ (CG 2)
		‘They explained to me that with Dimpho’s* condition, she will not cope at a normal school, she needs to go to a deaf school. I was expecting that she will go to normal school, but the situation was the situation, I had to accept it.’ (CG 3)
		‘From there we thought it was over, then we were suggested that we must move Mandla* from like normal school where he was to special school so he can get more assistance.’ (CG 9)
		‘Is he going to be able to be in a normal school? Because now … like the foundation classes, grade 1, grade 2 up to grade 4. I’m sure he is going to need a special school. So, I want to know in future maybe high school, will he still be able to go to normal school?’ (CG 9)
		‘What we found was that there were extremes. There was the school for the Deaf and there were schools for remedial education that were either public or Model C. But there was nothing that accommodated for children … somewhere on the spectrum.’ (CG 5)
		‘Paige* has managed to integrate into a mainstream school environment’ (CG 5)
	Further education and independence	‘We’ll see how it goes with him, … try to pick up what he loves and see where we can push him.’ (CG 1)
		‘ … . what future is she going to have?’ (CG 2)
		‘I’m concerned about Dimpho* … . so, I want to find out what I can do … to find something she can do with her hands [vocational work], like make-up or cooking.’ (CG 3)
		‘The one thing that I pray and wish for. I would like to see my child go to university because she is very intelligent … . And it will be so sad to see such an intelligent child not be able to go to university because she can’t speak.’ (CG 7)
		‘Is he going to be able to provide for himself when he is old or what kind of job.’ (CG 9)

Data availability statement

The datasets generated and/or analysed during the current study are available from the corresponding author on reasonable request.