Parental quality of life and social support in EDS/HSD

Quality of life and social support in parents/guardians of people (of any age) with Ehlers-Danlos Syndrome (EDS)/Hypermobility Spectrum Disorder (HSD).

Lead Researcher

My name is Eloise Crowson and I am a master's student from the School of Psychology at the University of Surrey.

I will be undertaking this research as part of my dissertation, alongside my supervisor Dr Bridget Dibb. We would like to invite you to participate in this research project.

The nature of this study is an online questionnaire, which is looking into quality of life and social support in parents/guardians of people (of any age) with Ehlers-Danlos Syndrome (EDS)/Hypermobility Spectrum Disorder (HSD).

I am looking to recruit around 100 participants who are a parent/guardian of a person with a formal diagnosis of EDS/HSD for my research study. All types of EDS are welcome to participate.

Study Details

The aim of this study is to examine the quality of life and social support of parents/guardians of people with Ehlers-Danlos Syndrome (EDS)/Hypermobility Spectrum Disorder (HSD). It also aims to examine whether this social support is associated with their quality of life, as this is yet to be studied. This will be achieved through asking participants some questions, via an online questionnaire (which should take approximately 15-20 minutes to complete) about their quality of life and their level of social support.

To take part in this study you must be a parent/guardian of a person with a formal diagnosis of EDS/HSD. Your child or dependent can be of any age (i.e. they can be a child or an adult). To be eligible to take part in this study you also must live with or be in close contact to your child with EDS/HSD and not have a diagnosis of EDS/HSD yourself.

Learn More