Investigating the use of digital legacies with people affected by Motor Neurone Disease (MND): An Interpretative Phenomenological Analysis

A video-based ‘digital legacy’ is a selection of videos which document a person’s life, memories, achievements, or special family events. The videos are copied to a digital source to be specifically given to a child or young person to use in the future. A video-based digital legacy may either be purposefully recorded by the person living with MND (plwMND), or, compiled later by bereaved family members. To date, there is little published research about how children and young people are affected when a family member has MND and subsequently dies. As such, there is a dearth of literature on how to best support these young people. Objective This research is investigating the views, perceptions and experiences of digital legacies with people affected by MND. Methods The study is underpinned by Interpretative Phenomenological Analysis (IPA) meaning a small homogeneous sample was required using purposive methods of recruitment. Interviews were conducted and audio recorded with four plwMND regarding their experiences of creating a purposeful digital legacy for a child or young person in their family. Interviews were also conducted with three bereaved young people regarding their experiences of using a video legacy of a parent who had died from MND. Also, a sample of twenty healthcare professionals, specialists and experts were interviewed from across the United Kingdom regarding their perceptions on the use of digital legacies with plwMND, and, young people who are bereaved. Ethics Ethical approvals were obtained from a Faculty of Research Ethics Committee at Edge Hill University (FREC), the Health Research Authority (HRA), and the National Research Service for Scotland. Discussion ‘The Model of Reciprocal Bonds Formation’ and coining of the term ‘autobiographical chapter’ has been developed from this study. Creating a digital legacy provides a number of mutual challenges and benefits for both plwMND, and bereaved young people. Recommendations are provided regarding i) optimal ‘windows of opportunity’ in which the digital legacy is recorded/used; ii) actionable solutions for current policy/practice; iii) future directions for research

Continuing Bonds with Children and Bereaved Young People: A Narrative Review

Background:- Finding alternative ways to reconnect with the deceased is a common feature of bereavement. However, it is currently unclear how bereaved children/young people establish and develop a ‘continuing bond’ with deceased family members. Aim:- To investigate how bereaved young people continue bonds with deceased family members. Design:- A systematically conducted narrative review was conducted using six electronic databases; CINAHL, Medline, EMBASE, PsycINFO, PubMed and BNI. Limiters were applied to peer-reviewed articles published in English. Studies were assessed for methodological quality using the JBI Critical Appraisal Tools. Results:- Nineteen articles were included in the review. Three overarching themes were generated; unintended connections, intended connections, and internalised connections. Conclusion:- Bereaved young people establish a sense of connection with deceased family members through various means (e.g. unprovoked/spontaneous reminders, physical mementos, internalised memories). Some connections are unintended and occur spontaneously. However, other young people will specifically seek ways to remember the deceased to provide a sense of enduring connection

Co-Creating and Evaluating an App-Based Well-Being Intervention: The HOW (Healthier Outcomes at Work) Social Work Project

Stress and mental health at work are the leading causes of long-term sickness absence in the UK, with chronically poor working conditions impacting employee physiological and psychological health. Social workers play a significant part in the fabric of UK society, but have one of the most stressful occupations in the country. The aim of this project was to work with UK social workers to co-develop, implement, and evaluate a series of smartphone-based mental health initiatives. A Participatory Action Research (PAR) approach, consisting of semi-structured interviews and focus group and steering group discussions, was utilized to design the mental health and well-being interventions. Study efficacy was evaluated via a pre- and post-intervention survey and post-intervention semi-structured interviews. Interventions developed were psycho-educational, improved top-down and bottom-up communication, and provided access to a Vocational Rehabilitation Assistant for those struggling and at risk of sickness absence. Six months following dissemination, surveys demonstrated significant improvements in communication, and mean score improvements in four other working conditions. This project, therefore, demonstrates that co-developed initiatives can be positively impactful, despite post-intervention data collection being impacted by COVID-19. Future studies should build upon these findings and broaden the PAR approach nationally while taking a robust approach to evaluation

The use of digital legacies with people affected by motor neurone disease for continuing bonds: An Interpretative Phenomenological Analysis study

Background:- Motor neurone disease is a progressive neurodegenerative disease without cure. Little is known about how young people are affected when a family member has the illness and subsequently dies, resulting in a gap in understanding of how best to support them. One psychotherapeutic approach involves creating a legacy to pass onto the young person, but little research has investigated the use of an emerging format, digital legacies, where videos document a person’s life, memories and achievements. Aim:- To investigate the views, perceptions and experiences of digital legacies with people affected by motor neurone disease. Design:- A qualitative study underpinned by interpretative phenomenological analysis. Setting/participants:- People living with motor neurone disease (n = 4) and bereaved young people (n = 3) in the United Kingdom. Open-ended interviews were conducted in person. Ethical approval was granted by a University ethics committee. Results:- Five key themes emerged exemplifying mutual challenges and benefits for people with motor neurone disease and bereaved young people. Creating a digital legacy provides a sense of purpose for people with motor neurone disease and a way to convey personality and life experiences. Bereaved young people can modify disease-related memories of the person and gain comfort from hearing and seeing videos. Conclusion:- This study expands the existing continuing bonds model of grief to include an ‘autobiographical chapter’, creating ‘The Model of Reciprocal Bonds Formation’