Knowing when I’m sick and helping me stay healthy

Healthcare professionals are always looking for ways that they can improve the lives and health of their patients, including research studies. Below are details of a study currently looking for volunteers.  Please use the contact details at the end of the page for more information.

Study title:

Knowing when I’m sick and helping me stay healthy: Parents’ insights into the impact of communication on the diagnosis, treatment and management of health problems in adults with Profound and Multiple Learning Disabilities


People with profound  and multiple learning disabilities have more difficulty communicating and being understood and need a lot of support. They are often marginalised, overlooked and excluded in many aspects of societal life, have more health problems and need more health care.

Family carers may face additional demands and stigma which negatively affect their wellbeing, be tired from caring, feel they have little time from themselves and have little support

Prior research has revealed that parents of people with learning disabilities can:

  • Find it hard to trust others with the care of their child and to be away from them
  • Feel disempowered in healthcare settings
  • Find getting along with health staff hard

Health staff can also feel unprepared to deal with the most pressing issues for family carers.

There is little research about the experiences of carers/parents of people with profound and multiple learning disabilities, their experiences of identifying healthcare issues in their family member, and their contact and communication with primary healthcare services.

What is the aim of the study?

This study is exploring the communication, health and wellbeing of adults with profound and multiple learning disabilities (PMLD) from parents’ perspectives. The main research questions are:

  • How does communication impact on the diagnosis and treatment of health problems for adults with profound and multiple learning disabilities?
  • What are parents’ views on the experiences of their sons and daughters with profound and multiple learning disabilities when they use health services?
  • What do parents believe would improve health services for people with profound and multiple learning disabilities?

Eight interviews have been carried out by Speech & Language Therapists and Darren Chadwick is analysing the data.

Juliet Goldbart (MMU) will carry out a check of the coding. The initial findings have been shared at a number of national and international conferences and journal paper(s) are planned.

Further information is available from Jane Jolliffe ( or Darren Chadwick (