Hi, I’m Miriam, Communications and Support Manager for SWAN UK.
As part of our ongoing work to provide better support to dads of children affected by undiagnosed genetic conditions, we sent out a dads survey in August – the first we’ve ever had specifically for dads, and we were pleased to get responses from dads across the UK sharing their experiences.
Dads told us about numerous challenges and were honest about some of the difficult feelings they sometimes have. When we asked them what impact their child having an undiagnosed genetic condition has had on their experience of fatherhood, responses were mixed and overall slightly more positive than negative. One dad said:
‘There’s lots of doubt – am I doing the wrong thing? Is there more I should do? Is something going wrong? Am I being too harsh or too soft in light of her health? It all robs me of my present with them.’
Highlighting the positive aspects of having an undiagnosed child another dad told us:
‘I believe it’s made me a stronger more caring and loving father who fights tooth and nail for my children. Just because they don’t have a voice I make sure they are heard though me.’
Many dads mentioned ‘time’ as their biggest issue. This includes finding time to balance work and home life, being able to have some ‘me’ time, time to give proper care to their child, time spent trying to make different hospitals and healthcare professionals coordinate with one another, spending time trying to get relevant support services for their child, time spent trying to get the right support from school, as well as having a lack of time to spend together as a whole family unit.
Another factor that dads reported was worrying about the future:
‘My biggest fear that sometimes kept me awake at night was that I might just walk in one day to find him dead. Now my child is a lot more robust but the reality is I still have no idea what the future holds for him and us.’
Impact on relationships
We asked dads if having a child with an undiagnosed genetic condition has caused difficulties for their marriage/relationship either now, or in the past. 57% said ‘some but we are ok’ and 4% said that it resulted in the break up of their relationship. One dad explained:
‘We blamed ourselves but we learned that it wasn’t our fault. We are stronger now than before.’
For some, however, having a child with an undiagnosed genetic condition has a profound effect on relationships:
‘It’s a massive strain all the time. Makes for stress and rows over decisions, uncertainty, making ends meet, just because we’re tired all the time.’
Impact on health
We were keen to find out about the impact on dads’ health, especially their mental health. One dad said:
‘Working more hours to get everything done and not having time to spend as a family or a couple can raise stress levels. I struggle to sleep when I have too much on my mind.’
Work and finances
Our survey found that of respondents, 79% are working, with 65% in full time work and 14% in part time work. Dads overall said they were managing on their income although many experienced additional financial strain. Some felt that finances would become more challenging for them in the future, the biggest causes of worry in the future relating to finances were the costs of equipment, house adaptions and travelling to medical appoitnments.
Finding SWAN UK
Almost 50% of dads who responded said that they heard about SWAN UK from their wife or partner. It was encouraging to see that 67% of respondents are in our Dads Facebook group but we know there are more out there who have yet to join. Only 50% of those who responded had attended any of our events.