Digital legacies with people affected by motor neurone disease: The views, experiences and perceptions of healthcare professionals, specialists and experts for use with bereaved young people

Abstract

Background: Motor neurone disease is a terminal neurological illness with no known cure. It is often referred to as a ‘family disease’ with the ripples causing additional implications for children and young people. As such, little is known about how to best support young people (24 years old and under) (WHO, 2019)) when a family member dies from the disease. One potential solution is through use of a digital legacy whereby videos which document a person’s life, memories and achievements are purposefully recorded by an adult during their illness. However, due to this being an emerging area of research, little is known about whether a digital legacy may support or hinder bereavement for young people affected by the disease.

Aim: To investigate healthcare professionals, specialists and experts views, perceptions and experiences of using digital legacies with bereaved young people due to motor neurone disease.

Design: A qualitative study underpinned by interpretative phenomenological analysis.

Setting/participants: Twenty healthcare professionals, specialists and experts were recruited using a maximum purposive sampling method. Open-ended interviews were conducted in participants’ place of work either over the telephone or by the lead researcher. Ethical approval was granted by a university ethics committee and Health Research Authority (HRA).

Findings: Two key overarching themes were identified from the data: perceived benefit and value for bereaved young people using a digital legacy and challenges and barriers for bereaved young people using a digital legacy.

Conclusion: A number of potential challenges and considerations were identified. However, the use of a digital legacy was perceived to be a feasible and valuable method of support for young people bereaved as a result of motor neurone disease.

Keywords:

• Digital legacy
• Motor neurone disease
• MND
• Parental bereavement
• Healthcare professional
• Qualitative

Additional information

Notes on contributors

Oliver Clabburn

Katherine Knighting

Mary O’Brien

Barbara Jack