Nicky Bridges, Clinical Nurse Manager at Robin House shares her findings into the impact the diagnosis of a life-shortening condition for a child has on fathers.
I have worked in children's palliative care for the past 19 years, with the last as a Clinical Nurse Manager in CHAS.
Over the years, I have witnessed the unprecedented strain caring for a child with a life-shortening condition has on families. Mums visiting the hospice will often openly discuss their feelings, anxieties, fears and concerns. However, as dads are often still working, building relationships and trust with them can prove to be much more difficult, as staff have little chance to explore with them how their child's condition impacts on their life. This prompted me to undertake a small research study to explore fathers' experiences of living with a child who has a life-shortening condition. The study provided a rich insight into the daily struggles they experience, how their life has changed as a result of having a child with a life-shortening condition, the challenges within relationships, and how they maintain a positive outlook, despite these experiences.
Fathers have spoken of the loss of hope at the time their child was diagnosed, and the challenges of a new world of clinical services and health professionals. They experience sleep deprivation, which can affect their relationships with their partners, and their other children, which often suffer due to the amount of support the parents must dedicate to caring for their child with a life-shortening condition.
Fathers spoke of a lack of support specifically for them and they highlighted a continuing feeling of guilt and anxiety, particularly if they go out. Many of them feel socially isolated from their peer group, with one father saying that he has no friends.
Maintaining full time employment is a challenge which can subsequently affect a family's finances. One dad had worked all his life, but has had to give up his job to assist in the care of his child. He cried as he explained how difficult this was: "We lost everything. There was no money coming in, it was hard, especially with birthdays and Christmas coming up….it was all the debt…we get money a wee bit at a time, but it's going to take time to sort it. It's hard, it's definitely not easy. It just plays on you all the time."
There is also a general perception that health services are more focused on the needs of mothers -one father describes a health professional's visits to the family home: "That's probably the hardest part, is having someone to come see mum, but not see me. She would speak to me if I was there, but it was focused towards the mother."
The fathers who took part in the study wanted to tell their story and are keen to share their experiences, as they want to help others in a similar situation to themselves. They have been very open in answering the questions, and speak of the therapeutic benefits of being able to speak about their experiences. They each have a range of experiences, some of which are distressing and others which give hope.
Each father spoke of the unpredictable nature of their child's condition and how this impacted on their experience of living with them.
Carrying out this study gave me a huge insight into what daily life is like for fathers. I am now working with one of my colleagues in family support to look at how CHAS can ensure that we are reaching the fathers who use our service to provide support which meets their needs.