Search

Aim: The study aimed to evaluate student and facilitator perceptions regarding the novel use of a Virtual Learning Environment (VLE) in the development and implementation of ‘Ivy Street’. Methods: Healthcare professionals enrolled on the first palliative and end of life care masters level module and course facilitators were invited to participate in the study. Two online surveys were developed comprising five open-ended questions to gain both student (n=16) and facilitator (n=4) perceptions of Ivy Street. Data were analysed thematically. Findings: The key theme to emerge was the ‘Positive Perceptions of Ivy Street’. A second sub theme ‘Critical Feedback of Ivy Street’ focused on some initial technical issues. Respondents perceived the use of Ivy Street to be enjoyable, enabling and promoting peer discussion, whilst also having a high impact on student engagement. Respondents commented how ‘Ivy Street’ removed concerns regarding confidentiality when discussing patient cases through utilisation of standardised Ivy Street characters. Conclusion: The novel use of a VLE through developing characters, a story, and vignettes, is considered to be an effective and engaging method of learning for healthcare professionals enrolled on a palliative and end of life care module.

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), 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’.

Background Burden and distress amongst family carers of people living with Motor Neurone Disease (MND) is reported widely. Evidence-based screening tools to help identify these carers’ needs and plan appropriate support are urgently needed. Aim To pilot the Carers’ Alert Thermometer (CAT), a triage tool developed to identify carers’ needs, with family carers of people living with MND to determine its usefulness in identifying their need for support. Methods Training workshops with MND Association Visitors (AVs) and staff and in South West and North West England, followed by implementation of the CAT. A self-completed online survey and semi-structured telephone interviews evaluated use of the CAT. Findings Sixteen participants completed the online survey with 11 volunteering to be interviewed. The CAT has potential to map change over time, helps to focus on carers’ needs, and improves communication with carers. Conclusion The CAT provides a structure enabling AVs to engage in a meaningful process with family carers to identify and discuss their needs.

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.

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 (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.

Background: Motor Neurone Disease (MND) is a terminal neurological disease. Little attention has been paid in the literature to investigating the experiences of children and young people who provide care for a parent with the disease. Aim: To explore how providing care for a parent with MND impacts upon a young person’s life. Sample: A purposive sample of seven young people who were bereaved or currently providing care for a parent with MND. Methods: A qualitative methodology with informal semi-structured interviews. Results: Five key themes were identified; initial MND diagnosis, changing family roles, implications upon education, implications upon social life and positive outcomes. Conclusion: The study suggests that young carers for a parent with MND experience substantial challenges in addition to some positive outcomes.