The COVID-19 Pandemic: The lived experience of people with Motor Neurone Disease

Investigating the lived experience of people living with MND during the COVID-19 pandemic

The lived experience of the COVID-19 pandemic from general scientific research has recorded the feelings of loss of control, isolation, anger and anxiety through the pandemic. However, there is no published research on the lived experience of those with MND during the COVID-19 pandemic. This study aims to discover the deep and meaningful experiences of those with MND during the COVID-19 pandemic through interviews. The results of this study will inform clinical practice, allowing those supporting people with MND in a professional capacity to better understand their experiences in this challenging time and thus offer more tailored support in the future.

What does taking part involve?

Participants will take part in a semi-structured interview which will take place over Microsoft Teams or Skype to ensure participants ability to continue shielding if wished. The study aims to explore participants' experience in depth. This will be done through one 45-70 minute interview or in up to 3 shorter interviews if this is preferable to the participant.

There is no set list of questions, allowing each participant to discuss what is important to them. To facilitate discussion the interview will start with a broad question. The researcher will listen carefully and use non-leading and general prompts to explore issues raised and allow for deeper understanding. Prior to interview: completion of the ALS Functional Rating Scale, a questionnaire including, age, date of birth, ethnicity, date of diagnosis, shielding status and who they live with. The researcher is aware of possible communication difficulties and participants have the option to have a family member/carer present throughout the interview if they wish.

Study location

UK wide but Sussex in particular

Who can take part?

People Living with MND with a confirmed diagnosis prior to start of Lockdown in March 2020
• Aged 18+
• Must be able to communicate in sentences, in English, either verbally or via communication software

Cannot take part if:

• Diagnosed with multiple neurological conditions or MND with Frontotemporal Dementia

How can I take part?

Anyone who is interested in taking part or who would like more information can contact the projects researcher, Natasha Coote,

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262