Three Minute Thesis

"The period between childhood and adulthood is a time filled with opportunity. 

It is a time of growth, change, and increased independence and autonomy for the young person transitioning and their parents or guardians. 

Moving from school to college or university, starting work, and becoming financially responsible for oneself. Moving out of the family home, setting up one's own home, and starting a new family. Creating new friendships and relationships and ending others.

It is a time of change and discovery filled with opportunities to take risks,  make mistakes, learn, and grow. 

Throughout this time, our parents watch on from the side, sometimes advising, guiding, and criticising our decisions—however, most of all, supporting us and giving us space and freedom to grow. 

At the same time, they also grow and experience a change in their roles and responsibilities. They find new opportunities that do not revolve around us—no longer making decisions for us. No longer financially responsible for us.

My study explores the experience of this time of transition for parents whose child has profound and multiple learning disabilities. 

Having profound and multiple learning disabilities means the young person will have more than one disability. They have a profound learning disability and will have great difficulty communicating. They will need high levels of support with most aspects of daily life;  they may have additional sensory or physical disabilities, complex physical health needs, or mental health difficulties. They may present with behaviours that challenge us (PMLD Network 2007).

When we are children and young people, our parents, together with an array of services, support us in managing our health and care. The support we receive from these services is directed by a paediatrician, a doctor specialising in children's health.  Once we become adults, we take responsibility for our own health and care. A General Practitioner oversees our healthcare and access to health and care services.

It is well-recognised that people with learning disabilities experience health inequalities and lack access to health and care services. Those with profound and multiple learning disabilities endure greater inequality and must overcome numerous barriers to access health and care services. Young people with profound and multiple disabilities require support for all aspects of their health and care. When they become adults, the support from child health and care services ends, as does the support received by the parents.

I want to discover what the transition to adult health and care services is like for parents of young people with profound and multiple disabilities living in England. I want to hear about what went well and what did not to understand their lived experiences.

The parental experience of transition is an under-researched area of practice. My findings can contribute to addressing the gaps in our current knowledge of this life transition and reduce the inequalities experienced by people with profound and multiple learning disabilities by informing future health and social care practice and service development.

It is much ambitious that this study will increase parental awareness of this life event, which may help parents prepare for their transition."

Reference: 

The PMLD Network (2007) Working together with children and adults with profound and multiple learning disabilities (PMLD). Available at: https://www.choiceforum.org/docs/PMLD_booklet.pdf (Accessed 03 November 2022)