About Down's Syndrome : Fathers’ experiences of parenting a young adult (18 to 25 years) who has Down’s syndrome

Can you help with this study?

Rebecca Piclet, who is pursuing a Doctorate in Clinical Psychology at Leeds, would like to talk to fathers, either by phone or online, about their experiences of parenting.

You can be a father of any age who is the parent of a young adult (aged 18 to 25 years) who has Down’s syndrome

You can be the biological father or a male who assumes a parenting role.

In order to take part you must have contact with the person who has Down’s syndrome.

The interviews will be semi-structured and will last between 45 and 90 minutes.

Rebecca hopes the findings of her study will allow for an increased understanding of how fathers perceive their role during this stage in the young adult’s life.

You can download the flyer here.

Background

Research on parenting tends to focus on mothers’ experiences as mothers are often known to be the primary caregiver. However, over recent decades, evidence suggests that fathers are more involved in childcare than previously, and many fathers want to be more involved. Researchers that have investigated the experiences of parenting a child who has Down’s syndrome have typically focused on what it is like for parents to receive a diagnosis of Down’s syndrome, or parenting experiences more broadly.

Whilst previous research has explored mothers’ experiences of parenting a young adult who has Down’s syndrome, fathers’ experiences in this area have not been explored. It is important to gather fathers’ experiences directly as the research demonstrates that mothers and fathers can differ in both their parenting experiences and coping strategies.

If you would like further information about this study and/or would like to take part, please contact: Rebecca Piclet: umrmp@leeds.ac.uk

What is the potential of this study to help people who have Down’s syndrome and their families?

My hope is that this piece of research may benefit people who have Down’s syndrome and their families, in several ways. 

Firstly, by providing a platform to enable fathers’ voices to be heard and to give fathers a chance to speak about their experiences. At the start of planning this research, I linked up with two fathers of children with autism who have become parent consultants for this research and have been involved in shaping the design and research questions. Both fathers described their experiences of being a father to a child with a developmental disability and whilst there were a lot of differences in their experiences, both fathers spoke about not always feeling recognised as an equal to their partner, or feeling valued by health professionals/teachers as playing a substantial role in the young person’s life. This is reflected in the literature that tends to focus more on mothers’ experiences of parenting, when in fact in recent decades there has been a shift with fathers being much more involved now in general.

Secondly, when speaking with the parent consultants, they spoke about how some of the best support that they have received is through listening to other father’s experiences in the ‘Dad’s group’ that they are both part of. I have had 3 interviews so far with fathers of young adults who have Down’s Syndrome, and when asked their reasons for wanting to take part, the fathers spoke about wanting to be able to help others, and hopefully that people will be able to read about their experiences and either ‘have some idea of what to expect’, or to feel like ‘they are not going through it alone’. One of the fathers spoke about feeling quite isolated when his child was born with no idea what the future held, and something he found helpful was meeting other parents who had older children who have Down’s syndrome so that he could almost ‘get an idea’ of what a future might look like. He spoke about this ‘lifting his expectations’ rather than ‘dampening them.’ This is not an area that has been researched yet, so hopefully this will fill a gap that families/fathers with a child who has Down’s syndrome may be able to look up/read about other’s experiences if they wanted to.

Thirdly, and linking to the point above, I think it is important to capture experiences of parenting a young adult who has Down’s syndrome to support people who have Down’s Syndrome and their families consider both the challenges and anxieties around issues such as, independent living, as well as the many opportunities that might be available to the young adult that families may not have been aware of. ‘

 

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