Psychodynamic insights from narratives of people with amyotrophic lateral sclerosis: A qualitative phenomenological study

Andrea Caputo

Abstract


This study explored the illness experience of people with amyotrophic lateral sclerosis (ALS) to widen narrative research on patients’ perspectives, adopting object relations theory as interpretative framework. A qualitative phenomenological analysis was conducted on the illness stories of 12 adult Italian patients with ALS, collected through an Internet-based database for the sharing of illness experiences of people with rare and chronic degenerative diseases. Three thematic areas were identified: “the experience of ALS from symptom onset to diagnosis”, “impact of illness”, and “coping with illness”. Overall, the central conflict experienced by people with ALS refers to the progressive loss of control on bodily experience, that is handled by means of denial and splitting defences to contrast such a process of somatic depersonalization. As well, the investment on interpersonal domain responds to a repairing strategy ensuring psychic vitality and sensorial integration to rebuild the relation between the self and the external world.


Full Text:

PDF

References


Bassola, B., Sansone, V. A., & Lusignani, M. (2018). Being Yourself and Thinking About the Future in People With Motor Neuron Disease. Journal of Neuroscience Nursing, 50(3), 138-143.

Bastos, A. F., Orsini, M., Machado, D., Pimentel Mello, M., Nader, S., Silva, J. G., … Da Silva Catharino, A. M. (2011). Amyotrophic lateral sclerosis: one or multiple causes? Neurology International, 3(1), 4.

Brott, T., Hocking, C., & Paddy, A. (2007). Occupational Disruption: Living with Motor Neurone Disease. British Journal of Occupational Therapy, 70(1), 24-31.

Brown, W. A., & Mueller, P. S. (1970). Psychological Function in Individuals with Amyotrophic Lateral Sclerosis (ALS). Psychosomatic Medicine, 32(2), 141-152.

Bury, M. (2001). Illness narratives: fact or fiction? Sociology of Health and Illness, 23(3), 263-285.

Caputo, A. (2013). Health demand in primary care context: What do people think about physicians?. Psychology, Health & Medicine, 18(2), 145-154.

Caputo, A. (2014). Exploring quality of life in Italian patients with rare disease: a computer-aided content analysis of illness stories. Psychology, Health & Medicine, 19(2), 211-221.

Caputo, A. (2015). The Relationship Between Gratitude and Loneliness: The Potential Benefits of Gratitude for Promoting Social Bonds. Europe's Journal of Psychology, 11(2), 323–334.

Caputo, A. (2019a). Deceptive Dynamics in Drug Addiction and Their Role in Control Beliefs and Health Status Reporting: A Study on People With Substance Use Disorder in Treatment. Journal of Drug Issues [Article first published online].

Caputo, A. (2019b). The Experience of Therapeutic Community: Emotional and Motivational Dynamics of People with Drug Addiction Following Rehabilitation. International Journal of Mental Health and Addiction, 17(1), 151–165.

Carli, R., Paniccia, R.M., Policelli, S., & Caputo, A. (2017). Clinical Psychology in Hospital setting. In M. F. Freda & R. De Luca Picione (Eds.), Healthcare and Culture: Subjectivity in Medical Contexts (pp. 145-171). Charlotte, NC: Information Age Publishing.

Charon, D. (2006). Narrative Medicine: Honoring the Stories of Illness. New York: Oxford University Press.

Chen, D., Guo, X., Zheng, Z., Wei, Q., Song, W., Cao, B., ... & Shang, H. (2015). Depression and anxiety in amyotrophic lateral sclerosis: correlations between the distress of patients and caregivers. Muscle & Nerve, 51(3), 353-357.

Cipolletta, S., Gammino, G. R., & Palmieri, A. (2017). Illness trajectories in patients with amyotrophic lateral sclerosis: How illness progression is related to life narratives and interpersonal relationships. Journal of Clinical Nursing, 26(23-24), 5033-5043.

Cohen, J. S., & Biesecker, B. B. (2010). Quality of life in rare genetic conditions: A systematic review of the literature. American Journal of Medical Genetics Part A, 152A(5), 1136-1156.

D'Alberton, F., Nardi, L., & Zucchini, S. (2012). The onset of a chronic disease as a traumatic psychic experience: A psychodynamic survey on type 1 diabetes in young patients. Psychoanalytic Psychotherapy, 26(4), 294-307.

De Wit, J., Bakker, L. A., Van Groenestijn, A. C., Van den Berg, L. H., Schröder, C. D., Visser-Meily, J. M., & Beelen, A. (2017). Caregiver burden in amyotrophic lateral sclerosis: A systematic review. Palliative Medicine, 32(1), 231-245.

Díaz, J. L., Sancho, J., Barreto, P., Bañuls, P., Renovell, M., & Servera, E. (2014). Effect of a short-term psychological intervention on the anxiety and depression of amyotrophic lateral sclerosis patients. Journal of Health Psychology, 21(7), 1426-1435.

Fegg, M. J., Kögler, M., Brandstätter, M., Jox, R., Anneser, J., Haarmann-Doetkotte, S., … Borasio, G. D. (2010). Meaning in life in patients with amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis, 11(5), 469-474.

Ferro, F. M., Riefolo, G., Nesci, D. A., & Mazza, S. (1987). Psychodynamic Aspects in Patients with Amyotrophic Lateral Sclerosis (ALS). Amyotrophic Lateral Sclerosis, 209, 313-316.

Foley, G., Timonen, V., & Hardiman, O. (2016). “I hate being a burden”: The patient perspective on carer burden in amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 17(5-6), 351-357.

Galvin, M., Gaffney, R., Corr, B., Mays, I., & Hardiman, O. (2017). From first symptoms to diagnosis of amyotrophic lateral sclerosis: perspectives of an Irish informal caregiver cohort—a thematic analysis. BMJ Open, 7(3), e014985.

Giorgi, A. (1975). An Application of Phenomenological Method in Psychology. Duquesne Studies in Phenomenological Psychology, 2, 82-103.

Goldstein, E. G. (2001). Object relations theory and self psychology in social work practice. New York: Free Press.

Gould, R. L., Coulson, M. C., Brown, R. G., Goldstein, L. H., Al-Chalabi, A., & Howard, R. J. (2015). Psychotherapy and pharmacotherapy interventions to reduce distress or improve well-being in people with amyotrophic lateral sclerosis: A systematic review. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 16(5-6), 293-302.

Harnett, T., & Jönson, H. (2017). “They are different now” – Biographical continuity and disruption in nursing home settings. Journal of Aging Studies, 42, 1-8.

Harris, M., Thomas, G., Thomas, M., Cafarella, P., Stocks, A., Greig, J., & McEvoy, R. D. (2017). Supporting wellbeing in motor neurone disease for patients, carers, social networks, and health professionals: A scoping review and synthesis. Palliative and Supportive Care, 16(02), 228-237.

King, S. J., Duke, M. M., & O’Connor, B. A. (2009). Living with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND): decision-making about ‘ongoing change and adaptation’. Journal of Clinical Nursing, 18(5), 745-754.

La Grutta, S., Di Blasi, M., La Barbera, D., Alabastro, V., Alfano, P., Guttilla, G., ... & Lo Baido, R. (2013). Meccanismi di difesa in un gruppo di persone con obesità [Defensive strategies in a big obese group]. Minerva Psichiatrica, 54, 239-246.

Langher, V., Caputo, A., & Martino, G. (2017). What happened to the clinical approach to case study in psychological research? A clinical psychological analysis of scientific articles in high impact-factor journals. Mediterranean Journal of Clinical Psychology, 5(3), 1-16.

Lemoignan, J., & Ells, C. (2010). Amyotrophic lateral sclerosis and assisted ventilation: How patients decide. Palliative and Supportive Care, 8(02), 207-213.

Locock, L., Ziebland, S., & Dumelow, C. (2009). Biographical disruption, abruption and repair in the context of Motor Neurone Disease. Sociology of Health & Illness, 31(7), 1043-1058.

Logroscino, G., Traynor, B. J., Hardiman, O., Chio, A., Mitchell, D., & Swingler, R. J. (2009). Incidence of amyotrophic lateral sclerosis in Europe. Journal of Neurology, Neurosurgery & Psychiatry, 81(4), 385-390.

Madsen, L. S., Jeppesen, J., & Handberg, C. (2018). “Understanding my ALS”. Experiences and reflections of persons with amyotrophic lateral sclerosis and relatives on participation in peer group rehabilitation. Disability and Rehabilitation, 1-9.

Marchini, F., Caputo, A., Napoli, A., Tan Balonan, J., Martino, G., Nannini, V., & Langher, V. (2018). Chronic Illness as Loss of Good Self: Underlying Mechanisms Affecting Diabetes Adaptation. Mediterranean Journal of Clinical Psychology, 6(3), 1-25.

Mock, S., & Boerner, K. (2010). Sense Making and Benefit Finding among Patients with Amyotrophic Lateral Sclerosis and Their Primary Caregivers. Journal of Health Psychology, 15(1), 115-121.

Oberstadt, M. C., Esser, P., Classen, J., & Mehnert, A. (2018). Alleviation of Psychological Distress and the Improvement of Quality of Life in Patients With Amyotrophic Lateral Sclerosis: Adaptation of a Short-Term Psychotherapeutic Intervention. Frontiers in Neurology, 9.

O'Brien, M. R., Whitehead, B., Jack, B. A., & Mitchell, J. D. (2011). From symptom onset to a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND): Experiences of people with ALS/MND and family carers – a qualitative study. Amyotrophic Lateral Sclerosis, 12(2), 97-104.

Oh, J., & Kim, J. A. (2017). Supportive care needs of patients with amyotrophic lateral sclerosis/motor neuron disease and their caregivers: A scoping review. Journal of Clinical Nursing, 26(23-24), 4129-4152.

Paganoni, S., McDonnell, E., Schoenfeld, D., Yu, H., Deng, J., Atassi, H., ... & Atassi, N. (2017). Functional decline is associated with hopelessness in amyotrophic lateral sclerosis (ALS). Journal of Neurology & Neurophysiology, 8(2), e423.

Pagnini, F., Rossi, G., Lunetta, C., Banfi, P., & Corbo, M. (2010). Clinical Psychology and Amyotrophic Lateral Sclerosis. Frontiers in Psychology, 1, 33.

Sakellariou, D., Boniface, G., & Brown, P. (2013). Experiences of living with motor neurone disease: a review of qualitative research. Disability and Rehabilitation, 35(21), 1765-1773.

Schattner, E., Shahar, G., & Abu-Shakra, M. (2008). "I used to dream of lupus as some sort of creature": Chronic illness as an internal object. American Journal of Orthopsychiatry, 78(4), 466-472.

Schattner, E., & Shahar, G. (2011). Role of Pain Personification in Pain-Related Depression: An Object Relations Perspective. Psychiatry: Interpersonal and Biological Processes, 74(1), 14-20.

Schattner, E., & Shahar, G. (2011). Role of Pain Personification in Pain-Related Depression: An Object Relations Perspective. Psychiatry: Interpersonal and Biological Processes, 74(1), 14-20.

Shahar, G., & Lerman, S. F. (2013). The personification of chronic physical illness: Its role in adjustment and implications for psychotherapy integration. Journal of Psychotherapy Integration, 23(1), 49-58.

Taruscio, D., Agresta, L., Amato, A., Bernardo, G., Bernardo, L., Braguti, F., … Vittozzi, L. (2014). The Italian National Centre for Rare Diseases: where research and public health translate into action. Blood transfusion = Trasfusione del sangue, 12 Suppl 3(Suppl 3), s591–s605.

Tomai, M., Lauriola, M., & Caputo, A. (2019). Are social support and coping styles differently associated with adjustment to cancer in early and advanced stages?. Mediterranean Journal of Clinical Psychology, 7(1).




DOI: https://doi.org/10.6092/2282-1619/2019.7.2009

Refbacks

  • There are currently no refbacks.