The journey for parents, from suspected to a diagnosed hearing loss for their child, can be difficult and stressful. The first few months are described to be like a jigsaw puzzle, where lots of pieces of information are needed to be joined together before confirmation and parents begin to understand their child’s hearing loss. Not only do parents have to understand why diagnostic assessment are repetitive, but once confirmed need to make choices around the ongoing management of hearing loss for their child. This paper aims to provide an insight to a parent(s) journey as they move from suspected hearing loss to confirmed hearing loss, seek support and learn about the community as they move forward on a pathway for their child.
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In Australia annually, there are over 297,900[1] births (ABS, 2018). On average in Australia, 1 in 1000 babies born has a confirmed hearing loss (ABS, 2018).Overall in Australia by pre-school age, 2 in every 1000 children tested are identified as having a hearing loss, and by the end of secondary school, more than 3 out of every 1000 children will require assistance because of hearing loss(ABS, 2018).
2016 in South Australia, approximately 20069 babies were born, of that number, 1 in every 100 birth did not pass the initial hearing screening and needed further diagnostic assessment with a paediatric audiologist and were referred to the Universal newborn hearing screening (UNHS) which is a part of the Women and Children Health Network (WCHN) in South Australia (UNHS- WCHN, 2016). Of early screening 50 newborn babies were diagnosed with varying degrees of hearing loss within six months of being born (UNHS- WCHN, 2016). In additional, a further 45 children 6months-5years were also diagnosed with hearing loss who initially passed at birth (UNHS- WCHN, 2016). Of the age range 0-5 years 1 in every 6 children live in a rural area (UNHS- WCHN, 2016). With 11.6 per cent of children who have hearing impairment are from non-English speaking backgrounds (UNHS- WCHN, 2016).
In 2012 the Health Hearing Early Intervention Working Group (HH-EIWG) was
established as a national group with representatives from each state to establish and
set practice standards for hearing intervention pathway for all newly diagnosed
children 0-5yrs in Australia (Australian Institute of Health and Welfare, 2013). In 2013, a national framework (Australian Institute of Health and Welfare, 2013) is developed and outlines the new standards for Practitioners working within the area of hearing screen, audiological management, Family or Hearing Coordinator and early intervention services (Australian Institute of Health and Welfare, 2013). The guideline provides a national standard to improve the journey for families from first screen, diagnostic assessment thru to treatment pathway and ongoing connection into a community for children and families (Australian Institute of Health and Welfare, 2013).The standard, aimed to improve upon previous difficulties of cases where parents of same suspect diagnosis received different levels of service support depending on which state the child had been diagnosed, which in turn affected overall long term quality of intervention from communication development, language acquisition social and emotional development, and education for the child, this was Australia wide issue (Australian Institute of Health and Welfare, 2013). The new standard embraced an Australian wide hearing intervention pathway that incorporated the broad diagnostic pathway and management that spoke to each other highlighting the importance of continuum of care to keep a family engaged (Australian Institute of Health and Welfare, 2013).
In SA like other states, the Hearing Coordinator’s role was established in accordance to the HH-EIWG national standards, and strives to support families to access and continue engagement with all services, in order to optimise the developmental outcome of all children diagnosed with a hearing loss (Australian Institute of Health and Welfare, 2013). A key criteria the Hearing Coordinator, is to provide an unbiased pathway that supports parents to make informed choices around their child (UNHS- WCHN, 2016). The pathway management support is ongoing and includes the broader pathway of such as Ear’s Nose Throat specialist (ENT) & paediatrician for medical management (i.e. Cochlear implant pathway), audiologist from both Women’s and Children’s health network children’s audiology service and Australian Hearing who provide information about technology assistance (i.e. hearing aids) and specialist early intervention programs that cover communication spectrum(UNHS- WCHN, 2016). It was worth noting that the Hearing Coordinator role only becomes involved with families once a confirmed diagnosis of hearing loss is established.
When a child is suspected to have a diagnosed hearing loss, parents feel a range of feelings from sad, angry, confused, to vulnerable, and guilty this is a natural reaction (Moeller et al. 2013, p146). Most will cry at the thought of what is the future for their child and are overwhelmed at the illogical thoughts they experience (Thornton, 2013).These feelings continue to confirmed diagnosis where most parents have little or no prior knowledge about deafness, deaf culture and have little to no knowledge of the types of intervention services that focus on listening and spoken language development (Moeller et al. 2013, 148). Most parents assume their child will have to use sign language and wear bulky hearing aid (Thornton, 2013). Quite commonly, parents fear an inability to communicate with their child, and that their child will develop deaf speech, a limitation in their life not being able to hear (Australian Institute of Health and Welfare, 2013). Parents see hearing aids as an identification of bullying from other peers and prolong making a choice to accessing hearing aids or cochlear implant (should it be needed) (FirstVoice, 2016).Like any parent, they want to do the right thing and give their child the best opportunities available, but struggle to commit, are overwhelmed by the opinions/conflicting information about choices present and decisions they are expected to make in a very short period of time (FirstVoice, 2016). This sense of urgency for parents to make life long decisions about their child’s hearing future has long divided the deaf community and questioned the human rights of the child by forcing parents to prematurely make choices on behalf of their child (Thornton, 2013). The term audism is often used by some within the deaf community to describe the medical community’s view of managing hearing loss (Thornton, 2013). It is suggested, that parents are lead to believe the ideals of the medical community who convey the notion that hearing is better, and scare hearing parents with the idea that their child’s hearing loss management should not include Australian Sign Language (ASL), should they want their child to succeed in learning to talk (Thornton, 2013). Moreover, the deaf community consider ASL to be the first option presented to parents before other intervention such as hearing aids/cochlear implant or auditory verbal communication, this belief does not take into account the range of hearing loss a child has and is confusing view for parents to understand (Early Childhood Intervention Australia, 2014). In contrast, medical community, have a goal to recreate hearing and provide the child with an opportunity to be as successful as hearing child and this includes accessing hearing aids/cochlear implants, broad types of communication services which includes auditory verbal & ASL as options(FirstVoice, 2016). In addition to the confusion parents face post hearing diagnosis; the recent introduction of the National Disability Insurance Scheme which changed how families access services and provided a new layer of urgency, confusion and economic choice to parents (NDIA, 2017-2018). The NDIS is a scheme by which the Australian government has applied neoliberalist ideals of free-market principles to disability support services (NDIA, 2017-2018). It was a move from the old way in which government gave money to particular disability services and people with a disability where expect to ‘fit’ what was offered, and move to where people with a disability and their families where able to exercise ‘choice’, essentially it allows for participants get a ‘NDIS funded plan’ which they could spend at competing services providers (NDIA, 2017-2018). They were now consumers, with purchasing power in a market of social services (NDIA, 2017-2018).
The role of the Hearing Coordinator is to support parents on their journey to connect with the broad medical/deaf community and encourage the parent, to develop their own knowledge base on how to support their child in a way that identifies with their own values and ideals (UNHS-WCHN, 2016). The Hearing Coordinator’s role is unbiased and challenges the oppressive of ideals of long held views of both sides of the community in a way that does not reject nor accept either sides ideals/values, but rather just support parents with neutral provision of information that allows them to develop their knowledge and understanding (UNHS-WCHN, 2016). Despite the divide, the Hearing Coordinator promotes and encourages engagement as a positive benefit for parents to learn they are not alone, there are other parents who are on a similar journey and importance to sharing their experience and just be connected (UNHS-WCHN, 2016). For parents, the positive opportunity to speak with other parents of children with hearing loss provides them with a strong support network, that gives insight to real-life information as they learn to understand the variety of ways a parent can support their child (UNHS-WCHN, 2016). Moreover, it provides the child the opportunity to meet other children with a hearing loss (Moeller et al. 2013, p158). Positive identification of hearing loss is the aim all around (UNHS-WCHN, 2016).
The method: Photovoice 300 words
Photovoice was first introduced by Wang and Burris in the early 90s, originally as photo short story, that enable them to assess health and socioeconomic needs of women living in rural farming communities of Yunnan province China (Liebenberg, 2018). Since then this theory –informed action based research method has continued to grow and be utilised by social workers to therapeutically highlight a wider range of social problems their clients may be struggling with (Liebenberg, 2018). The method helps to raise basic human right awareness within communities on issues such as, poverty, living conditions families and elderly, homelessness, domestic violence, and child bullying to name a few (Luttrell & Chalfen, 2010). Photography, becomes the narrative for clients to be empowered and motivated to document their own story through actively taking pictures of images significant to them, which in turn allows for reflection of the issue (Luttrell & Chalfen, 2010).Part of honouring the wisdom and expertise of clients experiences, requires a skilled social worker to facilitate critical reflection of their clients experiences, and in turn use the knowledge emerging from the reflection, as a platform from which their voice is amplified in ways that are able to be heard (Budig et al, 2018, p 6).
For this paper, photovoice is utilised to raise awareness of the overwhelming struggle parent’s face when told of suspected to confirmed hearing loss for their child (Thornton, 2013). The application of photovoice is to highlight to the board hearing loss community a parent(s) journey as they struggle to learn and understand both sides of the hearing impairment community (FirstVoice, 2016). Photovoice has been a way for parent(s) to express the impact of shock of suspected and confirmed diagnosis and the learning curve that follows (Moeller et al. 2013, p 147).
Careful collaborating when working with vulnerable populations requires the research to demonstrate creativity, mutual respect, flexibility, compassion, cultural competency, and patience (Luttrell & Chalfen, 2010). For parents of children diagnosed with a hearing loss using photovoice method exposes the vulnerability they feel as they come to terms with their grief and loss of the diagnosis needs to be ethically considered (Early Childhood Intervention Australia, 2014).Of particular concern is marginalization parents feel as a result of communication, cultural, social, and language barriers that their child will face in the future (Early Childhood Intervention Australia, 2014). These challenges have historically divided the hearing loss community from a variety of beneficial health education and outreach programs resulting in health inequities and limited health care access (Early Childhood Intervention Australia, 2014). De-identification of participants is done by referring to participants as parent 1, and so on.
Parent 1
At 18mths my child was diagnosed with a progressive hearing loss. This was my third child, having two older siblings with no loss or family history. I was surprised by the diagnosis, and I cried. My child was a bright beautiful child and I didn’t want hearing aids or a cochlear implant; I didn’t want my child to be excluded from play because of a disability; I didn’t want my child to talk differently or not at all. I didn’t want my child to be deaf. After the diagnosis, as a parent I am overwhelmed with appointments—there was audiologist doing hearing tests, diagnostic tests at the Womens & children’s hospital and then appointments with the ENT doctor. For the first six months there were an average of two appointments a week and I had to stop working just to fit it all in. The focus in all of these appointments was to try to fix my child. It felt like they were trying to squeeze my child into a box. We meet with all the early intervention providers and a big focus was on acquiring clear speech and I was advised early on by my provider to not use any signs, as they believed that this interfered with my child’s ability to learn spoken English and I believed them. My child was fitted with hearing aids, my heart broke a little more.
The Fish bowl
I took this picture because little did I know how many months I would be sittig in here hoping that they (audiologist) testing had got it wrong……Each time I entered I pray they tell me they had got it wrong…..But instead each time I entered I learnt my child hearing was progressively worse…..
I took this picture because I remember it sitting in the audiologist room as they explained to me if the hearing worsens and hearing aids don’t work that an implant will be my child’s pathway…..I cried and prayed that they were wrong…..
I took this picture because it symbolises the countless hours I sat in the waiting at my child’s appointments….praying, begging ,believing they had got it wrong…..
Photovoice provided an alternative way for professionals from the hearing community to understand the parents perspective of the journey they go on when their child is either suspected of or confirmed with a hearing loss (Moeller, et al. 2013, p 156 ). The research method provides insight into how exposed a parent feels dealing with sensitive topics such as hearing aids, methods of communication, an often under-acknowledged emotion professional within the hearing community overlook (FirstVoice, 2016). Parents seek support from the hearing loss community and professionals within as they deal with powerful emotions of denial, shock and upset they experience when facing diagnosis of hearing loss (Early Childhood Intervention Australia, 2014). The connection to community provides parents with a sense of hope to be understood of what they are feeling (Thornton, 2013). At this time, parents see the need for support from professional as important, positive support is perceived to empower parents to provide well for the child even when the diagnosis is confirmed as a loss(FirstVoice, 2016). Parent reflects on the time it takes to get final diagnosis following the screening process can leave them feeling isolated and unsupported in what is described as a drawn-out delay before a diagnosis of hearing loss is finally confirmed (Moeller, et al. 2013, p 156). Parents understand delay was due to difficulties with testing the individual child, difficulty with interpretation of test results obtained, and the need for multiple repeat tests over prolonged periods of time resulting in diagnosis delay(UNHS-WCHN, 2016). Parent describes this time as frustrating as feeling helplessness and anxious and isolated(FirstVoice, 2016). Parents reflect on how important the need for support from the professionals within the hearing community was to avoid feeling isolated and not belonging(FirstVoice, 2016).
Parents give insight to initial experience with professionals within hearing community and reflect on communication difficulties and misunderstandings had negatively impacted their child’s care(FirstVoice, 2016). Parents felt that at times some professionals who overlook parental reactions also did not explain findings clearly enough and parents would leave appointments feeling confused and disconnected from a community they are trying to navigate (FirstVoice, 2016). Parents found some professionals had mislead and provided incorrect advice which sometimes had been based on the professionals own knowledge and personal experience rather than fact (Early Childhood Intervention Australia, 2014). Moreover, misleading information at times had contributed to parents disconnecting from the hearing community prematurely which had led to impacting the overall development of children as final diagnosis was not achieved(Early Childhood Intervention Australia, 2014).
Photovoice applied to the journey of parents as they navigate hearing loss diagnosis in their child provides a valuable way for expression of parents’ thoughts, feelings, and experiences (FirstVoice, 2016). It gives an insight at a time when the future direction of hearing community from medical to early intervention has been questioned and where at a national level has moved towards a model of partnership where inclusion of parents with the support of the Hearing Coordinator are more active in the pathway decision making for their child(Australian Institute of Health and Welfare, 2013). The use of photovoice provides a tool for listening collectively to parents’ insights. As a Australian wide hearing screening programmes become established, inclusion of photovoice as a research in the programme evaluation and application of the findings to future programme planning and development will enable providers to better meet the needs of children with hearing loss and to adequately support and inform parents(Australian Institute of Health and Welfare, 2013). Professionals from the hearing community need to be trained in specific communication skills when delivering abnormal test results, and in identifying and dealing empathetically with likely parent reactions such as shock and denial(FirstVoice, 2016). Professionals from the hearing community need to ensure that apart of positive engagement with parents they are allocate sufficient time to communicate effectively and clarify questions for parents (FirstVoice, 2016). Verbal communications about audiological findings need to be supplemented with written information using simpler language, diagrams, and clearer explanations of the implications of hearing loss for language development(Australian Institute of Health and Welfare, 2013).
The aim of this paper was to show through photovoice the journey parents go on when their child is diagnosed hearing loss. Time and time again the essay attempts to highlight just how difficult and stressful diagnosis was and how important the need for emotional support and connection to the hearing community becomes for that parent. Moreover it provided an understanding of communication deficits often felt by parents of newly diagnosed child and professionals from the hearing community, particularly as providers attempt to explain a child’s hearing loss diagnosis and misinterpret when a parent experienced intense emotional reactions. Consistent support from the hearing loss community once a diagnosis was established is the constant highlight of parents as they go on a journey to learn about hearing loss, the and move forward with what is “best” for their child.
References
Australian Bureau of Statistics, Births Australia 2018, cat no.3301.0,ABS, Canberra.
Australian Institute of Health and Welfare. (2013). National framework for neonatal hearing screening. National performance indicators to support neonatal hearing screening in Australia. Cat.no. 73, ABS, Canberra.
Budig, K., Diez, J., Conde, P., Sastre, M., Hernan, M., & Franco, M. (2018). Photovoice and empowerment:evaluating the transformative potential of participatory action research project. BMC Public Health.Viewed 24th April, https://doi.org/10.1186/s12889-018-5335-7 .
De Lange, N.,Molestsane, R.,& Mitchell, C., (2015). Seeing how it works: A visual essay about critical and transformative research in education. Perspectives in Education, 33, 151-176.
Jarldorn, M. (2016). Picturing creative approaches to social work research: using photography to promote social change. Aotearoa New Zealand Social Work, vol. 28, no. 4, 5-16.
Liebenberg, Linda. (2018). Thinking Critically About Photovoice: Achieving Empowerment and Social Change. International Journal of Qualitative Methods. 17. 160940691875763. 10.1177/1609406918757631.
Luttrell, W., & Chalfen, R. (2010). Lifting up voices of participatory visual research. Visual Studies, 25, 197-200.
Moeller, P., Carr, G., Seaver, L., Stredler-Brown, A., Holzinger, D. (2013). Best practices in family-centred early intervention for children who are deaf or hard of hearing: An international consensus statement. Journal of Deaf Studies and Deaf Education,19(2), 143-175.
Early Childhood Intervention Australia. (2014). Early intervention best practice discussion paper. Viewed april 20th 2019,< www.ecia.org.au/advocacy/position-statements>.
National Dissability Insurance Agency (NDIA) 2017-2018 Annual report. Viewed April 23rd 2019,< www.ndis.gov.au >.
National Performance Indicators for neonatal hearing screening in Australia (2013). Viewed April 23rd 2019,< https://www.aihw.gov.au/getmedia/8df964e6-e1ff-469e-b350-846e82e74c15/15996.pdf.aspx?inline=true >.
Thornton, G. (2013). Early Intervention & Education for deaf & hard of hearing children. Viewed April 23rd 2019, www.deafaustralia.org.au >.
Universal newborn hearing screening (UNHS) Women and Children Health Network (WCHN) (2016). Viewed 23rd April 2019, < https://data.sa.gov.au/data/dataset >.
FirstVoice the future is hear (2016). Viewed 24th April 2019, < www.firstvoice.org.au>.
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