The key messages from this report for support services to help improve outcomes for children by improving the involvement of fathers are:
It is widely acknowledged that the make up of the average family is changing:
In 2004 there were 2.2 million families in Australia with children aged 0-14 years. One in eight of these families had a child with a disability. Of these families, 69% were couple families and 31% were one-parent families. Couple families with a child with a disability in which both parents were working was 56% compared with 61% of couple families without a child with a disability. 38% of lone parents who have a child with a disability were employed, compared with 52% of lone parents without a child with a disability.
The role that fathers play within the family unit has recently received some necessary attention. There is increasing recognition that children are more likely to be successful, and achieve, if fathers (as well as mothers) are fully and actively involved in their child’s upbringing and development. The Department for Education and Skills (DfES) states that the gains for children of engaging their fathers include:
These outcomes are independent of, and additional to, those related to the involvement of mothers. Both mother and father involvement are important for children and one is not a substitute for the other (DfES, 2004).
There is much written about the role of mothers in the development of children, including deaf children, and especially in the analysis of how they ‘cope’ with having a disabled child, their relationship with their child and their involvement with support services. Services have tended to centre around these findings, especially in terms of how to provide information, support parenting skills, and facilitate support networks.
However, little research has been carried out that focuses on the role of the father, his feelings about having a deaf child, his role as a caregiver, and engagement with services, both statutory and voluntary. Therefore:
“in families of children with disabilities, the nurturing role – and indeed the need for nurture – of the father often goes unrecognised by professionals” (Carpenter, 2000).
Fathers have been identified by researchers in this field as “hard to reach” (McConkey, 1994), “the invisible parent” (Ballard, 1994), and the “peripheral parent” (Herbert and Carpenter, 1994).
There is an assumption that fathers are not as involved as mothers in the development of young deaf children, but there is little research in this area. It is unclear how involved fathers have been in the initial diagnosis and follow up appointments for their deaf child. From research in other domains it has been found that:
“in contrast to mothers, fathers found it difficult to assert their involvement. Grief went unrecognised and unexpressed. Neither health and education professionals nor employers recognised the need of the father for inclusion in the family situation. Fathers were forced by professional structures and societal expectations to fall back on the nineteenth-century stereotyped role of protector, of being competent in a crisis, yet emotionally uninvolved” (Carpenter, 2000).
The National Deaf Children’s Society’s (NDCS) recent work on Parenting and Deaf Children (2004) conceded that little was known about fathers of deaf children. A recent study illustrated the vast majority, over 90 %, of enquiries to the NDCS Freephone Helpline are from mothers.
In the evaluation of the Newborn Hearing Screening Programme (NHSP) in England, interviews were carried out with family members “who had most involvement with their baby and had experienced the screening process”. Out of the 27 interviews, only 12 were attended by fathers (Young & Tattersall, 2005), which could reflect that they were unavailable for the follow up interviews or felt they had not been sufficiently involved in the process to comment.
In terms of support, previous research has shown that:
“fathers identified a need to be offered increased access to support, to be provided with opportunities to network with other fathers and to have their need for information and emotional support within the family addressed” (Carpenter, 2000).
Limited research also exists which looks at the differences between parents who have a child with a disability. For babies in intensive care, mothers and fathers showed quite different strategies for coping, for example, mothers reportedly being more likely to seek social support whereas fathers used more instrumental coping or tried more often to minimise the situation (Affleck, Tennen and Rowe, 1990). In the US, a programme was set up specifically to address the needs of fathers with disabled children and it found that:
“not only fathers who participated in the intervention program, but also their wives, report significant changes in their stress, depression, grief, social supports and satisfaction and information level” (Vadasy et al, 1986).
In order to better understand the specific needs of fathers of deaf children, the NDCS has established a project to ascertain the views of fathers of deaf children. The project was funded by a DfES ‘Strengthening Families Grant’ (funding for this work is for England only). The aim of this work is to help support family relationships by identifying the specific needs of fathers of deaf children and how service providers can work to support them.
The NDCS invited the fathers of deaf children from different areas in England to discuss a range of issues. The fathers were recruited in a variety of ways. Flyers were disseminated to local NDCS groups, schools with provision for deaf children and through teachers of the deaf in peripatetic services. Articles were also published in TALK magazine and the groups were advertised on the NDCS website. In total 33 fathers attended. Considering few “men only” groups for the fathers of deaf children have been held before, this was felt to be a strong turn-out and it exceeded the target number by 21%.
The groups included step-fathers and men separated from their children, from a variety of ethnic groups, and a mixture of hearing and deaf fathers. Therefore a range of language and communication types were used and both British Sign Language (BSL) and community language interpreters were present, when appropriate, to ensure that everyone could express their point of view. There was no specific goal to recruit fathers (all whom volunteered their services) with particular characteristics, more to gather a mixture of fathers with deaf children.
Aware of the perceived difficulties in engaging fathers in these consultation exercises, the meetings took place at what were seen as ‘male-friendly’ environments – Highbury (London), Old Trafford (Manchester) and City Ground (Nottingham) football stadia, and Edgbaston (Birmingham) cricket ground. The meetings were followed by a tour of the ground. Three of the meetings were held on a Saturday morning and one on a Wednesday morning.
After the meetings questionnaires were issued to those who came along regarding the key issues that had emerged and the resulting statistics are detailed throughout the report. The questionnaire was brief and asked multiple-choice questions. The return rate was 45%.
Additional quantitative data was gathered from the attendees relating to the age of their deaf child/children’s level of deafness, and the preferred form of communication. The charts in the following section illustrate our findings (n= 33).
Figure 1 shows that the groups were mostly attended by fathers with children at the younger range of the spectrum, particularly between 0-7 years.
|Figure 2: Profoundly deaf children were the largest group represented. The number of deaf children with other levels of deafness was fairly even.
|Figure 3 shows that BSL and use of other sign systems (including sign supported English and Makaton) is clearly the prevalent communication approach of the children represented by the fathers at the groups. The same number of children referred to in this survey use sign language in comparison to the combined levels of using the oral approach and a combination of both speech and sign language.
There were a number of key issues that emerged during the fathers’ consultation events. Often they were generic topics, relevant to anyone with a child, and we have included these points here, along with those specific to the fathers of deaf children. On the whole the participants were very positive about their parenting experiences although they raised a number of challenges, as well as suggesting improvements for systems and service delivery.
In the focus groups the fathers talked about their family circumstances and some common themes quickly emerged concerning how being the father of a deaf child had had an impact on their family life and the relationship with their deaf child, other children in the family, and in particular with their partner.
The fathers spoke openly about their initial reactions to finding out their child was deaf, and their thoughts for the future.
“You of course go through the grieving stage, don’t you? What does this mean in terms of my interaction as a father with my youngest son? I had a very good interaction with his older brother, going to football matches, doing all the things. What does this mean? Will I not be able to have the same sort of relationship with Alex because of his problems?”
“Your initial reaction is ‘gosh, this is an absolute change to family life and future relationship with my son’”
“When my two younger children were hearing that was a real shock for me, so it’s definitely the opposite experience. I am not used to having hearing children.”
Some spoke of the impact that having a deaf child had on them as well as on the rest of the family, both close and extended.
“You also need to be supported with your own feelings...it’s not that you are intentionally being a bad father, but if you’re feeling depressed and you are feeling you don’t really understand what is going on and your child can’t communicate to you, it is easier to stay at work than it is to come home. I think that that is something that has been a dark and long journey for me anyway to come through that. And going back over time to start over again I would like there to be more support for the fathers because somehow the mothers in the whole system invariably just by default end up somehow being supported. Somehow, I don’t know how, they just do.”
“People keep giving false hope, particularly family. They keep saying that when they were up visiting him he heard this and he heard that and for about a good year and a half afterwards people kept saying ‘Oh I shouted to him and he heard me, he turned around’. We finally got really angry with them. You are not helping us.”
Many fathers described how they saw themselves as a major source of support for their partner. They talked about the issues their partners faced as not only acting as the primary carer, but also in juggling appointments, and receiving substantial quantities of new information amongst other things.
“I tend to be the support role. My wife does most of the day to day and I try to get to meetings when I can. I am very much a support.”
“Jeremy is my step son. I came into his life about 6 months ago. So, I have been there to support them and the mum, but get a bit emotional sometime with the fact that Jeremy is deaf and he is very hyperactive. So I am there to support them.”
We heard about their relationship with their children, both deaf and hearing. Some felt that their partner had a better relationship with their deaf child.
“The communication issue is actually a barrier to that relationship and therefore I think its an impact of what happens early on, rather, I think its more the other way - we are talking here about a lot of issues that go on because my wife got more involved with my son at the early stages, she has built up a better relationship. She is more involved she understands deaf people better”.
A few fathers explained that they felt that they had a better relationship with their hearing children. Many different reasons where given as to why this was the case such as the fact that they were still coming to terms with their child’s deafness, difficulties with communication, missing out on crucial information and appointments as well as being at work.
“ … if you’re finding out that your son is deaf my question is about the emotional – I don’t want to use the word psychological, but the support for fathers around finding out that your child is deaf. So your wife has her friends and they are talking all the time, they are always talking to each other, when is this happening? who are you working with? who do you know? they get this nursery, that nursery, this person, that person. I don’t talk to anyone, I don’t talk to anyone about it.”
“My difficulty with my son is because he can’t speak to me. I find it difficult to speak to him, and that impacts on our relationship. So I am not saying – we do have a good relationship – but I don’t feel I have the same relationship with him as I do with my daughter.”
The very nature of the working day was also part of the problem. One father explained how he often worked long hours in order to avoid going home...
“I have always tried to get involved in any way but it is difficult when you’re going to work, seven in the morning and then you’re coming back at six o’clock. I was trying to make an effort. I was bathing her every night, that kind of thing, but the stuff during the day, the appointment and that, you are not feeling as if you get involved as much or if you’re looking at what you should necessarily be putting in, and plus you are feeling tired when you come home. It is sort of the experience of trying to kind of support your wife and listen to the problems when your head is already full of work and all the rest of it.”
Also discussed was the importance of taking personal responsibility and being proactive in their child’s life – particularly in their engagement with services.
“Fathers are left out of most things, but they are partly to blame as well. They take on a secondary carer role and they step back and say ‘I’ll let somebody else do this. When there is a system break I will step in, otherwise I will let the system run as it is running’. Us as fathers have to be more proactive than this.”
“I am as guilty as everyone else here. I am not that proactive. I tend to be the support role, my wife does most of the day to day, and I try to get to meetings when I can.”
Those who were more involved with the care of their deaf child spoke about the benefits that they had seen from this.
“I have got a part time job now. I feel I am tending to cover the appointments. My wife has got a full time job, so since then I have got a lot more involved. I have got a much better relationship with my daughter because of it.”
Fathers with older children spoke of how their relationship had developed with their deaf child, and about how different and special this relationship can be
“He’s a very cheeky boy, very argumentative. So I’m having arguments with him in the street in sign and people sort of stop and look, and they get embarrassed if you look and you say ‘I’m just having an argument about chocolate and toys and play station games and stuff’.”
The section covering attitudes towards men with deaf children and the traditional male/female stereotypes offered some insight into the way fathers believe they are perceived. It touches upon support groups (or the lack of) and how fathers think they are viewed by professionals, and other parents alike. Common themes included feeling peripheral, presumptions of indifference and a sense of general.
The lack of support from parent or support groups was made clear on a number of occasions.
“There is a lot of groups out there to take your children to, deaf groups and special day units and stuff but they are all full all women and they freak you out. You end up isolated, my son ends up isolated, we end up often in a corner on our own, being on our own, I have that situations where Mums have ushered their children way from me when we’ve been playing together on the floor and stuff because you’re a man and they don’t see why you should be there. And you just end up stopping going to the groups in the end. Because nobody likes to be cold shouldered and the man on the outside and frosted out, but you are.”
“But his emotional development has been a bit stunted because he never had that early on because as say was frozen out of these groups and stopped going in the end.”
“They often say that women are more receptive and more open and they are better at communication, but they are not really because they don’t make you welcome and they don’t bring you into the group and ask you about yourself and draw you out of yourself at all. It is just really difficult.”
It is clear these fathers believed the common assumption is that women care for the children. By default therefore they are the prime contact and target for information. Fathers were unsure about where they fit into this picture. This stereotype is for the most part accurate, but the male figure as the main carer is becoming increasingly prevalent as attitudes and roles slowly begin to evolve. However, the attendees believed there is still some way to go for service providers and professionals:
“I’m a stay at home dad, I went to all the hospital appointments often on my own and I just found that they often seemed quite disappointed that there was a dad and not a mum. When we did attend appointments together it was mainly me asking questions because I had most of the information and you are perfectly right, so many times I had to correct my wife because she walked out of the appointment having heard something completely different to what I’d heard. But whenever I put questions specialists they never answered me, they would answer the mum so it would be me putting the question then them talking to my wife and she used to get quite angry about it but I used to find it quite amusing.”
“The other thing is there is a lot of stereotyping in what they expect to happen by professionals, they expect its interesting earlier they expect you to be up upset when they find out your child is deaf, they expect that to happen, they expect the mother to be the one that is taking the primary care situation, talk to the mother sometimes as though you are going to be doing that, there’s a sort of stereotyping going on there, there’s a stereotyping whether you want a cochlear implant you know you want him to hear you don’t want him to grow up as a deaf adult, there is a – for me its very difficult because I know if you are in a job and you constantly see people with the same reactions you assume every body has the same reactions and every body is in the same position. Some of the attitudes of professionals to parents they stereotype behaviour, they assume that the mother will want to be more interested they will get on and do that the father will be a peripheral interest in this and they are almost building the self fulfilling prophesy that we are trying to deal with now. That comes out of the professionals in some cases.”
“I found that is a real kind of a theme that ran through a lot of hospital appointments in that you are treated as if you know nothing.”
This stereotype continues to impact upon many, not always positively.
“I have also found that people of normal hearing children or the general public they say well why can’t your wife handle this? Why can’t your wife handle this? Why do you have to do it? So coming here today was a struggle. So you have to go off work earlier so you can get there before every body else comes so people turn round and say why can’t your wife go there, why can’t she handle it, but like you have to be involved so you are going against the society norms. That is what society thinks - this is your job, this is her job.”
Some noted the lack of male role figures amongst specialists in the field of deafness.
“The other thing is I think if you look at all the professionals, the audiologist is female, teacher is female, specialist female, there are not many role models, of males within the professions that you’re dealing with. So invariably I think that one of the big issues, I think that happened they are all females. Where is the empathy that you can have with a male who is a professional? There is not.”
One father briefly explained the effect pre-conceived ideas and stereotypical notions have had upon his life:
“You will have a different set of friends, you will have problems with your family, your family will look at you differently now. They will try to ignore your child. Pretend its not there. Your friends who were friends with you all the time will do the same.”
The majority of the fathers felt that the focus groups were a rare and much needed opportunity to discuss the emotional aspects of being the father of a deaf child. Despite the nature of the subject, they were open in their discussions and unanimous in agreement on what they wanted from services.
Initially there was sense of neglect, and the fathers felt they were unable to talk about their emotional well-being, that they were rarely considered at all, and with no forum or opportunity to speak out.
“This is the first time that I have ever been formally asked about my feelings, about having a deaf child.”
It was very clear they wanted an opportunity to build a network in order to mix with other men to discuss the common strand in their lives. But they also wanted this to be organised by an agency or service, so that the logistical element did not become an additional responsibility. They felt they could benefit from the input of professionals
“I am more of a face to face like pie and a pint, because it is like a male bonding thing isn’t it? We all relax more I think when we are all face to face…we need to be brought together, whether it is involves you every week or every time, maybe not as formally but you know maybe informally every quarter or something, I don’t know. Then I suppose you need someone to steer the discussion and stuff.”
“So I think that for us to sit down like this where we can generally let off steam, I think like you say, you talk to other people, you find out what is going on and you can show if you have a problem with something you go to the centre you can show a united front – you’re not fighting on your own.”
”I think, what we are saying about the actual network thing to me is very important. It is almost like enabling us to meet like this, something that would keep a network going. I think that is one thing.”
The message was very clear: the groups wanted to meet up every so often, preferably without partners as many groups already exist to support mums. Some fathers suggested meeting without their children.
“We have been invited to lots of family days and I am like George, I tend to find that left with the kids, or my kid, Andrew, and my wife is off jabber jabber until the end of the event then she suddenly reappears and says it’s time to go home. Is there any chance of organising a Fathers day where the wives are not invited, maybe even the children are not invited so we could all get together maybe once a year and swap information and have a chat, an informal day, not all sitting round a table like a conference or focus group just somewhere relaxed, maybe in a pub, somewhere quite nice?”
“I just think that what was really specific about this event was by targeting fathers and actually saying sorry, no children this time, it was very important, and I have waited 3 years.”
Another strong message was the desire for active face-to-face information sharing:
“You can produce as many glossy brochures as you like and have interactive chat rooms and web sites and stuff. I think for me I’ve found out more this morning talking for two hours to people than I have from say the last six months of reading stuff. So, the one thing I would say is more of this would be great for me. And whether it is a pub or whatever, and then hopefully from that people will ring each other and say fancy meeting up, John and you, whatever, and then it will grow. It may take a few of these to kick that off, but in terms of investment of time I just respond far better to hearing people rather than reading stuff.”
For some parents, discovering their child is deaf can be a shock. 90 percent of deaf children are born to hearing parents with little experience of deafness. It can take time to fully comprehend the range of decisions to be made and possible changes in lifestyle that may accompany having a deaf child. It is acknowledged that many hearing parents may not be equipped with sufficient understanding or knowledge of deafness, and find the period around the initial diagnosis difficult to cope with. It is a period when both parents, and not just fathers, need a sense of comfort and clarity of information because it is an emotional time.
The fathers at the groups described how they reacted to the initial diagnosis in different ways. As illustrated below, some tried to employ a rational, scientific approach, whilst others needed time to work it through.
“Unfortunately, it was just Jan, my wife who was there, present when the test was done. The issue then of course, was that we had to talk about it afterwards. Clearly it was a shock to both of us. I work as a scientist, this is my natural inkling is to get as much information as possible. I was straight on to the internet, straight on to finding everything about what deafness means, you go through the grieving stage don’t you, what does this mean in terms of my interaction as a father with my youngest so. I had a very good interaction with his older brother going to football matches, does this mean will I not be able to have the same sort of relationship with Alan because of his problems?”
“And I think it is probably only after a year really when it was confirmed that she had the hearing loss, and probably even later after that that we as parents accepted it and I think there is - we can talk about it later - there is a big delay between us being told she’s deaf and us as parents being accepting that she’s deaf.”
In general, the reaction reported from most hearing fathers was one of surprise.
“There is no history of deafness within the family, close family or any relatives. So, it was a shock.”
But for one deaf father, it was quite the reverse and he was surprised to find out his child was hearing.
“When my first child was diagnosed as hearing I was surprised but when my deaf children were diagnosed as deaf the doctor said ‘I am sorry your child is deaf’ and the doctor expected me to be upset but I was not. But when my two younger children were diagnosed as hearing that was a real shock for me so it’s the opposite experience. I am not used to having hearing children.”
Supporting what is often suggested to be the case, a number of the fathers were not present at the diagnosis.
“I did not attend that appointment, so my wife was told that our son was deaf.” “I was not there when he was diagnosed deaf by the audiologist.”
They spoke about how difficult they found this, and the negative impact it had on their future understanding. These issues are discussed in more detail in the ‘Volume of appointments and time off’ section.
Experiences of services and the professionals involved in the initial diagnosis period were mixed and dependent on the area they lived, therefore reinforcing the idea of the “postcode lottery”. Some fathers were critical of the service they received.
“We weren’t really explained why he was given hearing aids, we weren’t explained – it was not explained to us the purpose and unfortunately from my point of view I could not understand why someone, a child who was profoundly deaf, what benefit they could get from hearing aids. It was not explained to me at all.”
“I found was that there was no-one available for two weeks to answer all our straight immediate questions, why? Because it was half term.”
Others described more positive experiences.
“But once it had been diagnosed I think the support was very, very good. He already started nursery. Prior to having his hearing aids fitted teacher for the deaf came into the school for a week or so, brought in hearing aids. Demonstrated to all of the children and so took away some of that stigma that you might have expected had he just suddenly turned up. The experience to start off with, its harder for my wife and myself as parents than it was for Mark because it was exciting and different, it was a shock for the other parents but the support was really good. At moment he has a radio aid and they are putting a sound system in the class. Its temporary at the moment to see what impact it has. But the thought is it will help improve the learning of other children.”
“Alice said you take him I have taken him for the last two years. I was actually there when the health visitors were doing the initial tests, and then we came across and said he is not responding as he should be. So we were then referred to our local audiology department. We both went, he was diagnosed. They said he has definitely got a problem, we will sort you out with some hearing aids. Then the day after, virtually one day after the teacher of the deaf rang up, and started to offer their support, and when he did the first initial visit I was there.”
What was prominent in the groups was a sense of needing greater guidance and support from statutory services subsequent to the initial diagnosis, not only for the benefit of fathers, but for the family as a whole. They particularly wanted to meet deaf people, and also to receive more concise, specific information rather than an avalanche of intimidating paperwork at a time of vulnerability.
“Talking about professional people, maybe you can get a professional deaf person because the medical professionals…are not Sign Language users or from the deaf community. Maybe you need a deaf professional to come in and explain to the family about the different options.”
“Maybe they can come up with an overview of what is likely to happen over the next couple of years so you can prioritise and get the right information and know where the sources of the information are. Because one thing you are given is a pile of leaflets and you don’t know where to start. But not necessarily do that but at least the likely ones, but there are these and these other ones are less important.”
“Providing information to parents at a level they can access leads to a better understanding of their child’s strengths and needs. This in turn empowers them to make informed decisions and enables them to be active in their child’s management. The parent feels in control, which helps to reduce their stress and anxiety. Thus, the giving of information is a vital and necessary role of the professionals within the team” (Bemrose, 2003).
Information can be given in a variety of ways: in publications, in DVDs/videos, or in discussions. Some of the fathers who had begun to access this information were amazed at just how much was available.
“I am staggered by the amount of services that there are out there to help us in terms of how much there is. The problem is finding out about it and accessing it. I think as fathers where you find out about it is from the Teacher of the deaf and from other parents. As a father I think you really miss out on the whole information process.”
It is a basic principle of family-friendly services, that for any parent to be engaged with their deaf child and the support services provided for them, then they need information. ‘Information’ was not just used to refer to the giving of ‘facts’ but also to support discussions that had been held where information had been shared (e.g. during appointments or meetings). One of the main problems with information for fathers was that in many cases they were not receiving it. This was happening for a number of reasons:
a. Information was not directed to them.
Examples were given illustrating how no information had ever been given directly to them, or addressed to them.
“I am overwhelmed by the amount of resources there are. It has been amazing but they don’t seem to involve me. No-one seems to be asking who I am, do I even exist? Adam exists, the centre of attention, Debbie is part of the package. But the father, am I even on the list of people to actually speak to?”
“A lot of the information I get from the school is sent directly to me because obviously I have made them aware that we’re not together, and that is not a problem. But the rest of the other information like doctors appointments and things like that they will send to his mum.”
b. They were not at meetings where information was shared – this could either be information from professionals or other families of deaf children.
Information sharing opportunities are vital for building up the knowledge base required to act as an active carer of a deaf child. Many of the fathers spoke about the disadvantage they felt at missing information given out at appointments. These are discussed in more detail in the ‘Volume of appointments and time off’ section.
c. Information was not passed directly to them.
Much information was given either verbally or in writing to the deaf child’s mother as she tended to be the one in contact with the support services. The fathers acknowledged that with verbal information the version they were likely to receive from the mother was ‘filtered’. This could be because she did not recount the information word for word, so chose which points to feed back; the information might have been subject to their own bias for example - if they preferred one particular professional, those comments were reported more positively than others. Which could also have been subject to their personal interpretation. This was why many of the fathers reported it to be such a problem that they could not attend appointments themselves.
“My wife communicates with me a lot, but you know you can’t capture everything that has gone on and all of the nuances.”
“Everything I pick up is second-hand through my wife and because she gets emotionally involved and can’t help when she feeds back information to me from the appointment with the specialist and I get her biased view. It’s not deliberately biased but it is inevitable that what they say to you is not necessarily what was said to them. They put their own spin on it.”
“All of the visual bits when the teacher of the deaf communicates with the child. It is their movements, the way they sit. Sometimes your partner does not pass on to you. So they said this and did this, but what they don’t pick up on is the teacher of the deaf is sat there with lots of facial gestures, that don’t get passed on to you. Trying to do the same with your child you’re not as effective because you’re not expressing yourself as your wife has been experiencing when she goes to the sessions.”
There was also discussion of the amount of pressure taking the lead with all of the care and information sat upon the mother’s shoulders, and how part of the fathers’ role should be to support her, and participate in the whole process.
“There is just so much information coming at you. And from your wife’s point of view she probably felt completely swamped by information. So it’s really important that both of you are there because then you’ve got four ears to hear all this information. Then afterwards you can go through it, whereas if she’s having to take it all in and explain it to you bits will get missed.”
Information sharing is also more than just passing on facts. To be of value, information for many people has to be absorbed and discussed with others. Therefore even if fathers were given the information this may not be enough for them to actively engage with it. There also need to be opportunities for them to discuss it with others, get different points of views and ask questions. Mothers are likely to be getting an opportunity to do all of this at meetings with professionals, at parent and toddler groups or at schools or clubs.
“My wife goes to all of the appointments and you don’t always get that information. To go to the appointments is one thing, but you would also like time to yourself to get information from the professionals. It’s kind of a different thing.”
Additionally as some fathers are ‘dipping in and out’ of appointments (ENT meetings, audiology clinics, Teacher of the deaf visits), there needs to be a consistent message given out by the multi-agency team. Some of the fathers spoke about the problems they had understanding the system, various points of views and their options because they all seemed so different. Ideally what they would like is either a ‘one-stop shop’ for information or a pack that contains all of the background information about deaf children and the support services for them. It is interesting to note that such information does exist (the DfES Early Support family file) and in many areas will be being routinely distributed to families – however what this may highlight is that it is not being shared with fathers.
As for the function of information, it can be seen as having a vital role in facilitating the information-sharing and understanding between fathers and professionals as well as between the two parents of a deaf child.
It was suggested that specific fathers-only events would offer the ideal situation for them to discuss information and get support from other fathers in a similar position. The amount of information that is passed on at such events should not be underestimated.
In terms of ensuring that publications are accessible to fathers they found it difficult to make solid recommendations. They wanted them to be written inclusively, for example, making sure that where appropriate ‘parents’ were referred to rather than just ‘mothers’. They also wanted correspondence to be addressed to both parents.
“Just to back up what you’re saying is I am living with my wife and often - well, 90 % of the time letters are addressed to her and it is only if I happen to see a bit of paper on the side and I pick it up and read it and think ….I didn’t know about that. She’s very good at telling me about things, but not necessarily immediately, and it is annoying that all the letters and still now it has been five years now that I have been his sole carer and they still won’t address the letters to me.”
The “inclusiveness” of the information (mainly printed) was mentioned. They highlighted that some information for families only used images of women with children – and no fathers.
They were unsure of whether, or more importantly, how the content of information should be tailored to be more accessible to a male audience. Some did suggest that different formats of information can improve accessibility for them. For example, one of the fathers would have found DVDs better to engage with, and some preferred to access the information on-line.
“I work and work, I am totally focused on just getting on with it. Sometimes you’re not thinking about some of the things you should be thinking about from home. So unless I am prompted in some way to check up or see what is happening. If they could tell me, giving me a report, giving me something that I can access, even if it is on a website or something.”
It can be seen that by having good quality accessible information, fathers may feel more empowered and be more likely to take a stronger role as carer of their deaf child. This supports their understanding of the system and services for deaf children, the development of deaf children and the factors that are important in parenting.
“I don’t know how you get that information over to people, but if it could be, if you could find local information, it’s really helpful because it makes you able to play the system.”
“They will have explained it all to my wife, that happens at a meeting and you will get it second-hand. There is no mechanism, written, web based anything like that that actually says this is what these departments do, this is what these type of appointments are for. That general information is not available if you want to research up on it.”
By having limited access to information some attendees felt that they were disengaged with their deaf child and taken out of the decision-making and supportive process. It can be imagined how this would lead to a poor relationship between the father and their deaf child, and possibly impact on the whole family.
“When your wife goes to a couple of the appointments and you have not been there, you sort of lose track of what is going on. She tells you something and you have no idea what is going on. And you end up saying ‘So, how did that happen?’ and she says ‘Well, you’ve never been there.’ I have to listen to that all the time now.”
When asked, eighty two percent of the fathers said they had read some or a lot of information about deafness. They stated that they felt the rate would increase if the information was written specifically for, and passed on to fathers.
It is perhaps no surprise that communication came up as a prime issue, as it often does with parents of deaf children. Most of the issues raised by fathers were around the use of sign language. The fathers discussed the fact that good communication was important for developing a firm relationship with their offspring and also for their child’s own sense of identity.
“Immediately when Chris was diagnosed we both agreed to learn BSL. We felt not only it was more than just communication, it felt as if we were doing something positive to begin the journey into learning what it is like to be deaf, but we did both agree that we would both do it so we both did it on separate nights and attended evening classes.”
“Now, what we have kind of, I mean, we’re oral with James but when we are at home we do both because we feel it is important to realise that James is a deaf child. When he gets older, he has a choice he can be a hearing person or he can be a deaf person, if he wants to communicate with another deaf person, he’s got the ability to sign.”
Some fathers felt that their partner had a better relationship with their deaf child because they could communicate in sign more easily.
“The actual ability to communicate and the exposure to more BSL as well between my wife and son it means that they actually have a better relationship.”
“We don’t really do that sign language which is essential. I am fascinated by it. He understands the sign language, sometimes he tries to speak to me in it and I can’t understand. I will sit down and try to understand him and he will sit down and try and I can’t and I try to pick it up, but Mum can understand a bit of it”
They also discussed difficulties in developing their sign language skills. A number of practical barriers were identified by the fathers, particularly by working fathers. For example they felt that being at work all day and missing out on key appointments, such as time with the teacher of the deaf, meant that they missed out on key information and an opportunity to develop and practice new communication strategies.
“So the teacher of the deaf and the BSL instructor was coming home every week choosing a time when my kids were home as well, the eldest two, and they were getting training in BSL. I was coming home late at night and I was getting a leaflet and going through a bit and using my name and pronouns, goodbye and thank you. That is where my BSL finished.”
“I could have sat in those sign language classes at nine o’clock and when it finished I could not remember anything that had happened. It’s the extension of the day as well sometimes. You know, a whole day at work and you have that afterwards. I am not sure how effective evening classes can be.”
The fathers also highlighted a number of difficulties in accessing BSL classes. The issues raised included the problem of organising childcare so that both parents could take part in the classes. However the main difficulties mentioned were in relation to timing, costs and waiting lists associated with BSL classes.
“My wife is doing level two at the moment. I am redoing level one because I am a stay at home dad, I am his carer, main carer, and the only sign-language courses we could get on are night classes which we had to pay for ourselves, and we kept getting let down with baby sitters so I kept having to stay out them from the classes to look after Adam for the night while Mum was out learning, so I never took the exam.”
“When I spoke to the director and explained that we have got a deaf child, it was ‘there are loads of families with the same problem, you just have to join the queue’ and we are still waiting, that was last March.”
“We were fully involved in the decisions myself and Jenny we have been to the delta organisation, a weekend away, learnt about the oral approach, we had learned sign language at major personal expense to myself £400. I had to pay for that, I didn’t get any assistance. Two years, no assistance from the county for it.”
“The timing of the course obviously is particularly important for a father because lots of fathers are at work during the day and they need something in the evening and also if both parents are going to learn to sign, if they both go together that is a big support, but then of course somebody has got to be at home with the child and that all needs to be paid for.”
There was recognition that spending time with their child and making the effort to come to understand and communicate with them effectively was the best way to really improve their sign language skills. It seemed that the fathers of older children could see that setting up good communication between them and their child was the most important step to take.
“Most I have learnt is from my children, because they reinforce – no, it’s like this, not like this”
“We were given videos, books, everything. My daughter and her brother both sat in front of the TV with their legs crossed, sat there doing all of the little signs. We got on very well that way”
The main issue raised centred around how services for deaf children and their families are primarily delivered during the usual working day – nine to five, Monday to Friday. The effect of this was that the fathers were therefore in a position of choosing whether to take time off work to attend or whether to miss the appointment or visit. Several of the fathers spoke about not only how a very sympathetic employer or flexible working patterns were required for them to be able to attend appointments, but also how annual leave was used up to allow them the time to attend.
“Samir’s diagnosis – again it was all during the day, all the cochlear support programme, the twelve month assessment, counselling stuff was during the day. That was more time off work.”
“They offered us sign classes, during the day. Which I didn’t get chance of getting to because I was working.”
The fathers noted that having appointments in the middle of the day was particularly troublesome as it required even more time off, commenting that having appointments either at the start or end of the day would be preferable for them.
“It takes me an hour to get there, two hours for the session, an hour then back to work, so in fact a full morning or a full afternoon.”
“A lot of meetings happen at eleven o’clock, and I can’t do eleven o’clock. If you want to give information to working fathers is there some way of making that information available at a time like eight pm.”
For many of these fathers it was not feasible to attend all of the appointments because there were just so many. It was suggested that what they needed was someone who could guide them through what was important and which appointments not to miss.
“It was just from the fathers point of view, if you’re working full time it is difficult to be at too many meetings, and nobody really deciding which is the important one. And so somehow you are supposed to decide which is the important one and you really don’t know.”
“You have to have an understanding employer and you can get away with some things. But you are in the balance, which are the most important things to go to and which are not?”
By missing appointments, a father can miss out on the clinical/medical input (from ENT and audiological meetings), knowledge and support (from the Teacher of the Deaf meetings and voluntary organisations) and the family to family interaction (parent toddler groups, local deaf children’s groups) which many parents cite as being crucial.
“My wife was told – I mean I did not attend that appointment, so my wife was told that our son was deaf.”
“Sheila goes to all of the appointments, she sees all of the professionals. They come to the house when I am not there and I have to accept that she has got all of the information. I just have to accept that – let her get on with it. You dip in and out as you can. It’s difficult. You feel left out because you have to accept that I have very little of the knowledge that she has.”
The fathers themselves thought that this not only limited the amount of information they received (see information section) but also the amount of support they felt they got and were able to give their children and partner.
“On Friday she said, ‘oh because you did not come he had his IP review’. And I said “well you never told me about this one. But you cannot make it so I assume you don’t need to know’. So these are the things which I think have created a lot of problems between my wife and myself. I am really struggling with that one.”
“You pick up most of your information from other parents. They are the voice you really want to hear, you don’t really want to speak to another expert or another doctor. You need to speak to another human being.”
“If it was just my wife going she would know everything and I would feel guilty for not knowing and if my wife was upset I could not support her because I did not know everything.”
As several of the fathers were unable to attend all of their child’s appointments they felt they had to pick which ones were the most important. Some felt this was best for medically important meetings, such as ENT consultations or cochlear implant team assessments, but others felt that they would benefit more from the regular Teacher of the deaf visits. The fathers spoke about the amount of information, knowledge and support mothers seemed to get from numerous support services and how this seemed to benefit their relationship with their deaf child.
“At the time I could not go part-time. She went part-time. As a result of that decision and what has come of that point of our lives we have gone down a route which has ended up with me, I have got a poorer relationship with my deaf child than I have with my hearing child.”
It was acknowledged that the sheer volume of appointments that were sometimes needed for deaf children, especially those with additional needs, often resulted in one of the child’s parents, usually the mother, having to cut down on or stop work. Due to the financial implications of this the father sometimes needed to work more hours to compensate, or take less time off to attend appointments. For some mothers their working capacity decreased and it could be seen that this would lead to an increase in the pressure on the father and a reduced amount of time (or energy) he had to spend with his deaf child and family.
“It was a myriad of appointments and information coming in on different things.”
“I think that initially my wife was working part time so she was involved in all of the appointments. I mean she must have been going to at least three or four a month, and she was trying to juggle part time job and everything else. She was told that a lot of parents or families with hearing impaired deaf children, actually one or the other partners will give up their job in order to cope with appointments and everything else.”
“My wife does not work so she is spending an awful lot of work doing admin, seeing the teacher of the deaf, chasing hospitals and everything to do with implants and all the rest of it.”
“There was lots going on. It was stressful at the time because of the number of meetings happening that we were both trying to go to. Both got demanding jobs, that becomes quite difficult and in the end my wife went part-time and ultimately, about a year later, actually stopped work completely. It was not practical to carry on with the amount of things going on.”
“I think work tends to think that because you’re the father, you leave it to your wife, or leave it to somebody else to sort of do it. They frown upon taking time off. Any time off that I have taken has always been holidays. So if I’m interested in the diagnosis checks I would have to take half a day off to go to sit in the hearing booth and things like that.”
There was a plea for more co-ordination of services, more co-operation between services, and an explicit keyworker role.
“We’re seeing about nine or ten different specialists, for different things.”
The attendees expressed a need to be directed through the services, and issues around having a deaf child, as they felt they did not have the capacity to build up this knowledge for themselves.
Provision of early support, and the development of integrated Children’s’ Services are intended to address these issues, but the fathers’ experiences in all four regions do not support that either this is yet happening for them in a consistent manner or that they are able to access this information and support.
“But even when we have audiology or audiograms it has got a carbon copy of all the people they send the information to. There must be nine people it goes to. There is the people like speech therapists, this, that and that places I have never heard of it goes. I would like to, rather than having ten people having files on Lena, maybe sort of one or two, three people just in charge of everything to do with Lena. A bit more centralised. That way obviously you know the person a bit better, things won’t get lost, and people won’t get kept out the loop. It just seems like everybody gets copy of everything and no one really knows what they are supposed to be doing.”
“...but you have lots of different threads all happening, and very little co-ordination….. its a whole layer of things…there is no project management.”
“I think the key point for me is in terms of the decision making process. You pick up different pieces of information at different appointments and we are lacking a central point of reference for our decision making, so we have the teacher for the deaf telling us something about education, we have our paediatrician telling us about education, we have a speech therapist telling us about education, we have someone at hospital who will mention something in passing. And because you can’t get to every appointment you get very piecemeal and for me it is the idea of having one person who I can talk to …who can explain to me, particularly me as someone who does not make every single appointment, explain to me what my choices are.”
Some of the fathers suggested that a one-stop shop would suit them in terms of offering information and support.
“There should be a one stop clinic for all these tests. Initially at least. The barrage of testing that is doing in the clinical - tests for this and that. You - nothing happens. They go there they tap your baby a bit and say fine we send a report, the next time you go to the clinic they go through the same questions again takes a blood sample and say we will send you a report.”
It was suggested that at the time of diagnosis (similar to children diagnosed with other disabilities), information was given (or was on a poster on the wall) about where to go immediately to find out more or to get help.
“Because Alex was born prematurely I think the thing that struck me as amazingly fantastic was in the neo-natal unit the big signs talking about – I can’t remember the name of the agency – but it was ‘contact this number if your child has just been born prematurely”, for emotional support. I don’t think my wife and I should have been allowed to leave [the hospital] that day without being given a number. I think it would be amazing if I went in and my audiologist said here is a number, or it was really just in your face.”
Something that some of the fathers had experienced and recounted as being very helpful to them was videoing of appointments, or other feedback of what had taken place. Where this had happened they were able to keep up to date with their child’s progress and hear the discussions with the professionals but at a time that was suitable for them.
“I’ve never been to one of the sessions with the teacher of the deaf but my wife, or the teacher, videoed it once so I could see what she was doing”
“What techniques you should be using to try and get the right information across and learn the right things. That video has really helped me.”
“My daughter has a regular sort of reading test assessment in terms of the reading age, and the listening support team video that so we have got a chronological diary, plus the techniques they are using in order to teach the child to read.”
“I know when Fleur was implanted I couldn’t make one of the appointments there, we asked if they could video her session with the speech therapist and they videoed all of the sessions there. My wife brought them home so it didn’t mean me saying to her, ‘how did they do it? How did Fleur get on?’ I used to look forward to watching Fleur performing on the telly and it gave me tips on how to communicate with her.”
“For a few appointments we actually get letters back that say at this meeting this was covered, we decided to do this. It’s fantastic because you get the letter back and it actually gives you a record of what happens.”
As discussed previously the fathers also wanted to see ‘father-only’ events and it could be imagined that this would be an ideal forum to introduce the professionals and their roles within the multi-agency team as well as supporting the fathers to engage with services.
Those fathers whose access to services was restricted by their only operating in regular “office” hours talked about how this experience impacted upon them and what they felt needed to be put in place to support them better.
“…but you would also like time for yourself to get information from the professionals. That is one thing. The other thing as well… whatever groups they have, or like speech therapy that is going on, you can’t kind of capture that and put that into something that can be easily translated, as an experience…you kind of get snippets of it. So that actual learning experience, if you like, I miss out on…. like tips or you know, how to do things…all of the visual bits when the teacher of the deaf communicate with the child, it is their movements, and the way they sit, sometimes your partner or wife does not pass on to you. So they said this and they did this, but what they don’t pick up on is the teacher of deaf is sat there maybe waving, lots of facial gestures that you don’t get passed on to you. You are trying to do the same with your child and stuff, but you’re not as effective because you’re not expressing yourself the same way as your wife has been experiencing when she goes to the sessions.”
“So there would seem to be very little flexibility, a lot and most of the information was done between nine and five and I could not get – I had to be very, very choosy about which appointments I went and from my point of view that’s something that’s in the melting pot, about if you want to give information to working fathers, is there some way of making that information available in one place at a time like eight p.m. or something, rather than nine thirty a.m. So that is what I feel.”
“Basically I think that, like everyone here, we work during the day. Surely they must provide a service where they can’t just work nine until five, they will have to work beyond, or even a Saturday morning, I mean that would be probably the biggest help, it is such a simple thing. I mean we are all working in a society when we’ve all worked flexible hours. Surely services and centres can be flexible with time as well just to accommodate parents.”
“There is a lot of that work you can only deal with over the phone during the day….my wife spends a lot of time phoning and chasing people up when there are issues around statementing and so on. You come home in the evening and you can’t help at all with that, because the people you want to talk to are no longer at work…I work in an open plan office, I can’t have those discussions on the phone…immediately you are excluded from getting involved in that sort of aspect of it…maybe it is worth putting in the report to different services about arranging a meeting (time) once a week so fathers of deaf children could contact the office once a week if they have an evening session.”
“Since that time, over the years, we have actually swapped roles… so I have really got a lot more involved and I have a much better relationship with my daughter because of it….I have always tried to get involved, but it is difficult when you are going to work at seven am in the morning and coming back at six o’clock.”
From the questionnaires, 47 % of fathers stated that they currently often or always attend their child’s appointments. If offered appointments in the evenings or at weekends (i.e. outside of regular working hours) this would increase to 94 %. Therefore by offering meeting times that are more convenient for fathers who work they anticipated that their regular engagement levels would double.
There was also discussion about how other factors in the organisation of events could be a barrier to fathers attending. Included in this they spoke about how generic ‘parent’ events would not meet their needs as well as specific ‘fathers’ events. 56 % of the fathers said that they have attended some or a lot of events for parents of deaf children. 100 % said that they would be highly likely to attend if these events were run specifically for men.
Additionally when asked how involved the fathers felt in making decisions about their deaf child, only 56 % said ‘very’. 81 % said that by having information directed to them they would feel more involved in their child’s care. 69 % said they would feel more involved if there were special events just for fathers, and 44 % said they would get more involved if they could get more time off to attend appointments. This shows just how much more services can support fathers to be involved in the care of their deaf child by making what in practice are fairly simple changes to current practice.
There are approximately 34,000 deaf children in England, and almost 90 % grow up in families who have no experience of deafness. Childhood deafness can lead to great strain on wider family relationships. There is a paucity of robust research about the impact of having a deaf child on fathers in particular.
The consultation events have proved very useful in terms of illustrating how committed the fathers of deaf children are to being involved in the care and support of their deaf child. They raised a number of issues which were really presenting barriers to them being able to be an active, supportive caregiver and suggested ways that these could be overcome.
From this report it can be seen that there is a greater need for all support services to engage fathers of deaf children. The fathers spoke very positively about their children but regularly cited the difficulties that they faced in their specific fathering role.
The fathers explained about how having a deaf child could impact on their home life and how the dynamics can change between the parents, with the father taking on a role where he is supporting his partner more. The fathers also expressed concern about how different their relationship was likely to be with a child who had a different hearing status to them (i.e. deaf child with hearing father).
The fathers expressed the difficulties they had with coming to terms with having a deaf child and their need for emotional support. This seems to be an area that is neglected by “support services”, both statutory and voluntary, which are more tailored to meet the needs of mothers. Fathers want the opportunities to meet with other fathers and discuss the issues in having a deaf child.
The time of diagnosis can be equally shocking and daunting for the hearing fathers as it is for mothers. The fathers reported receiving a mixed level of support at this time. What they agreed on was that they needed information to be as clear and accessible to them as possible. There is also a need for the families to be aware of the diagnostic process so that fathers can be present at the crucial appointments, to talk to professionals and support their partner and child.
Building on the issue of information, three major barriers were highlighted by the fathers. Information is not directed to them, and very often they therefore miss out on it. This is as much a problem for written as it is verbal information. They do not take part in information sharing events which are vital for building up knowledge about deaf children and services, either formal (as in meetings with professionals) or informal (at parent groups). Information they do receive is often filtered or piecemeal and therefore can be of little assistance or confusing. Services therefore need to consider how they get clear accurate and unbiased information directly to fathers in a way that the fathers can fully access.
One of the major areas that the fathers felt they were missing out on in terms of a lack of information, time spent in discussion with professionals and time with their child was in development of communication skills with their deaf child. They found it difficult to develop their communication skills simply from spending time on it in the evening and that their partners were better as they had more exposure to people communicating well with their child (whether it be the teacher of the deaf, deaf role models, audiologists). Sign language classes were not as useful as they could be in helping to rectify this as they were expensive for both parents to attend, caused childcare problems and places were not always available at a suitable time.
The volume of appointments that having a deaf child entails is problematic for working fathers. They would like information about the content of appointments so that they can choose or be guided to which are the most important for them to be present at. Many spoke of experiencing difficulties at work due to the amount of time off they needed, or the requirement to have a very understanding employer, and about how all of their annual leave was used up in attending their child’s appointments. It was acknowledged that this added an additional pressure to their family, and led to them feeling ‘uninvolved’ as they missed out on the important information given out at such meetings.
By not having sufficient information and not being able to attend every appointment for their child the fathers felt disempowered and unable to fully engage with their deaf child and the services provided to support them.
The fathers spoke about how greater coordination between services would benefit them. They suggested having a more ‘streamlined’ provision where there was better communication between individual service providers. This would benefit them as they would not need to spend time looking for services, and that there would be agreement in what the services were telling them. Information sharing would mean the information they received would be more coherent and they would be more involved with the care of their deaf child. Videoing of appointments, liaison between practitioners, and special events for fathers were all highlighted as helping with more holistic care and inclusion of the fathers of deaf children.
The key to actively engaging fathers was suggested to be greater service flexibility. The key need that the men flagged up was having services available to them out of regular working hours. They appreciated this could not always be available but that they would have been able to be much more involved with their deaf child’s care if there was, for example, occasional appointments held on evenings or weekends.
They did feel that they faced negative stereotypes in terms of what was expected of them as fathers and that this posed a real barrier to how they could engage with services. There was also a strong assumption that the primary caregiver, and therefore the parent engaging with services would be the mother and services seemed to be tailored to meet their needs, thus excluding the fathers. Also encouraging this is the fact that many support workers, including social workers, teachers of the deaf and those from the voluntary sector in this field are female.
The key suggestions made by the fathers consulted with are:
12-Nov-2015 10:09 AM (AEST)