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’.
O’BrienMClabburnO.Motor neurone disease/amyotrophic lateral sclerosis: what’s in a name?BJNN2016; 12(2): 82–84.
2.
The International Alliance of ALS/MND Associations. ‘United in the Worldwide Fight Against ALS/MND’, https://www.alsmndalliance.org (2018, accessed August 2018)
OhJKimJ.Supportive care needs of patients with amyotrophic lateral sclerosis/motor neuron disease and their caregivers: a scoping review. J Clin Nurs2017; 26(23–24): 4129–4152.
5.
FreudS.Mourning and melancholia. London: Vintage, 1917.
6.
WimpennyPCostelloJ.Grief, loss and bereavement. London: Routledge, 2012.
7.
ThompsonN.Loss and grief: a guide for human services practitioners. London: Palgrave, 2002.
8.
SilvermanPKlassDNickmanS.Continuing bonds: new understandings of grief. Washington, DC: Taylor & Francis, 1996.
9.
WalterT.A new model of grief: bereavement and biography. Mortality1996; 1(1): 7–25.
10.
FearnleyR.Writing the ‘penultimate chapter’: how children begin to make sense of parental terminal illness. Mortality2015; 20(2): 163–177.
11.
ChochinovHHackTHassardT, et al. Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life. J Clin Oncol2005; 23(24): 5520–5525.
12.
AndoMMoritaTAkechiT, et al. Efficacy of short-term life – review interviews on the spiritual well-being of terminally ill cancer patients. J Pain Symptom Manage2010; 39(6): 993–1002.
13.
VuksanovicDGreenHDyckM, et al. Dignity therapy and life review for palliative care patients: a randomized controlled trial. J Pain Symptom Manage2017; 53(2): 162–170.e1.
14.
BassettD.Who wants to live forever? Living, dying and grieving in our digital society. Soc Sci2015; 4(4): 1127–1139.
15.
AllenRHilgemanMEgeM, et al. Legacy activities as interventions approaching the end of life. J Palliat Med2008; 11(7): 1029–1038.
16.
AounSChochinovHKristjansonL.Dignity therapy for people with motor neuron disease and their family caregivers: a feasibility study. J Palliat Med2015; 18(1): 31–37.
17.
BentleyBO’ConnorMBreenL, et al. Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease. BMC Palliat Care2014; 13(1):12.
18.
SmithJFlowersPLarkinM.Interpretative phenomenological analysis: theory, method and research. London: SAGE, 2013.
19.
WarrenC.Qualitative interviewing. In: GubriumJHolsteinJ (eds) Handbook of interview research: context and method. London: SAGE, 2001, pp. 83–102.
20.
ReidFFlowersPLarkinM.Exploring lived experience. The Psychologist2005; 18(1): 20–23.
21.
SaundersM.Choosing research participants. In: CassellCSymonG (eds) The practice of qualitative organisational research: core methods and current challenges. London: SAGE, 2012, pp. 37–55.
22.
GrayD.Doing research in the real world, 3rd ed.London: SAGE, 2014.
23.
Van ManenM. Phenomenology of practice: meaning-giving methods in phenomenological research and writing. London: Left Coast Press, 2014.
24.
JonesSAdamsTEllisC.Handbook of autoethnography. Walnut Creek, CA: Left Coast Press, 2013.
25.
WongL.Data analysis in qualitative research: a brief guide to using NVivo. Malays Fam Physician2008; 3(1): 14–20.
26.
SmithJ.Evaluating the contribution of interpretative phenomenological analysis. Health Psychol Rev2011; 5(1): 9–27.
27.
MadisonG.Bereavement and loss. In: Van DeurzenEArnold-BakerC (eds) Existential perspectives on human issues: a handbook for therapeutic practice. London: Palgrave Macmillan, 2005, pp. 338–355.
28.
AllenR.The legacy project intervention to enhance meaningful family interactions: case examples. Clin Gerontol2009; 32(2): 164–176.
29.
HallSGoddardCOpioD, et al. Feasibility, acceptability and potential effectiveness of dignity therapy for older people in care homes: a phase II randomized controlled trial of a brief palliative care psychotherapy. Palliat Med2011; 26(5): 703–712.
30.
VitaleAGengeA.Codman award 2006: the experience of hope in ALS patients. Axone2007; 28(2): 27–35.
31.
SaldingerACainAPorterfieldK, et al. Facilitating attachment between school-aged children and a dying parent. Death Stud2004; 28(10): 915–940.
32.
AndoMTsudaAMoritaT.Life review interviews on the spiritual well-being of terminally ill cancer patients. Support Care Cancer2007; 15(2): 225–231.
33.
AndoMMoritaTOkamotoT, et al. One-week short-term life review interview can improve spiritual well-being of terminally ill cancer patients. Psychooncology2008; 17(9): 885–890.
34.
NormandCSilvermanPNickmanS.Bereaved children’s changing relationships with the deceased. In: KlassDSilvermanPNickmanS (eds) Continuing bonds: new understandings of grief. Washington, DC: Taylor & Francis, 1996, pp. 87–104.
35.
RootRExlineJ.The role of continuing bonds in coping with grief: overview and future directions. Death Stud2014; 38(1–5): 1–8.
36.
FieldNGaoBPadernaL.Continuing bonds in bereavement: an attachment theory based perspective. Death Stud2005; 29(4): 277–299.
37.
PackmanWHorsleyHDaviesB, et al. Sibling bereavement and continuing bonds. Death Stud2006; 30(9): 817–841.
WordenW.Grief counseling and grief therapy: a handbook for the mental health practitioner, 2nd ed.New York: Springer, 1991.
40.
IrwinM. Mourning 2.0 - continuing bonds between the living and the dead on Facebook. Omega 20152; 72: 119–150.
41.
FosterTGilmerMDaviesB, et al. Comparison of continuing bonds reported by parents and siblings after a child’s death from cancer. Death Stud2011; 35(5): 420–440.
42.
BrewerJSparkesA.Young people living with parental bereavement: insights from an ethnographic study of a UK childhood bereavement service. Soc Sci Med2011; 72(2): 283–290.
