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Psychoeducational groups for people with Amyotrophic Lateral Sclerosis and their caregiver: a qualitative study

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Abstract

Objective

The current study aimed to describe the implementation of a structured psychoeducational intervention in Amyotrophic Lateral Sclerosis (ALS), identifying the needs of both patients and their caregivers.

Methods

Five patients and thirteen caregivers attended eight psychoeducational group meetings at the Respiratory Rehabilitation Unit of IRCCS Santa Maria Nascente of Fondazione Don Carlo Gnocchi, Milan (Italy) and eight participants underwent semi-structured interviews once the group sessions ended. Group sessions and semi-structured interviews were audio-recorded and transcribed verbatim. Then, data obtained by group meetings’ transcripts have been analysed using the grounded theory (GT) paradigm, while those obtained by interviews have been analysed using the interpretative phenomenological analysis (IPA).

Results

The analysis of the meetings allowed us to identify seven main themes: “practical advice”, “explanation of the pathology”, “recognition of emotions”, “adaptation”, “family and relationships”, “being caregiver of oneself”, and “sharing”. Twenty-one sub-themes also emerged from the transcripts’ analysis. The analysis of the interviews allowed us to deduce the main reasons to participate (i.e., to have information and to be able to share experiences), the positive and negative aspects of the experiences. These results suggested the usefulness of psychoeducational groups in the regular clinical practise to allow patients and caregivers to share advice, emotions, and experiences with others in the same situation.

Conclusions

This study displays the utility of psychoeducational group intervention in supporting people with ALS and their caregivers because of two main reasons: first for the psychoeducation provided by professionals; second for the possibility of sharing experiences and emotions with people in the same situation.

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Data availability

The datasets generated during and/or analysed during the current study are available from the corresponding author on a reasonable request.

References

  1. Zarei S, Carr K, Reiley L, Diaz K, Guerra O, Altamirano P et al (2015) A comprehensive review of amyotrophic lateral sclerosis. Surg Neurol Int 6(1):171

    Article  Google Scholar 

  2. Chiò A, Benzi G, Dossena M, Mutani R, Mora G (2005) Severely increased risk of amyotrophic lateral sclerosis among Italian professional football players. Brain 128(3):472–476

    Article  Google Scholar 

  3. Chiò A, Logroscino G, Hardiman O, Swingler R, Mitchell D, Beghi E et al (2009) Prognostic factors in ALS: a critical review. Amyotroph Lateral Scler 10(5–6):310–323

    Article  Google Scholar 

  4. Mitchell JD, Borasio GD (2007) Seminar Amyotrophic lateral sclerosis. Lancet 369(9578):2031–2041

    Article  CAS  Google Scholar 

  5. Brown RH, Al­Chalabi A. Amyotrophic lateral sclerosis. N Engl J Med. 2017;377,2.

  6. Pagnini F (2013) Amyotrophic lateral sclerosis : a review 48(3):194–205

    Google Scholar 

  7. Wicks P, Abrahams S, Masi D, Hejda-Forde S, Leigh PN, Goldstein LH (2007) Prevalence of depression in a 12-month consecutive sample of patients with ALS. Eur J Neurol 14(9):993–1001

    Article  CAS  Google Scholar 

  8. Kurt A, Nijboer F, Matuz T, Kübler A (2007) Illness trajectories in patients with amyotrophic lateral sclerosis: how illness progression is related to life narratives and interpersonal relationships. CNS Drugs 21(4):279–291

    Article  Google Scholar 

  9. Cipolletta S, Gammino GR, Palmieri A (2017) Illness trajectories in patients with amyotrophic lateral sclerosis: how illness progression is related to life narratives and interpersonal relationships. J Clin Nurs 26(21–24):5033–5043

    Article  Google Scholar 

  10. Caputo A (2019) of Clinical Psychology sclerosis : a qualitative phenomenological study. Mediterr J Clin Psychol 7(2):1–15

    Google Scholar 

  11. Palmieri A, Abrahams S, Sorarù G, Mattiuzzi L, D’Ascenzo C, Pegoraro E, et al. Emotional lability in MND: relationship to cognition and psychopathology and impact on caregivers. J Neurol Sci [Internet]. 2009;278(1–2):16–20. Available from: https://doi.org/10.1016/j.jns.2008.10.025

  12. Palmieri A, Sorarù G, Albertini E, Semenza C, Vottero-Ris F, D’Ascenzo C et al (2010) Psychopathological features and suicidal ideation in amyotrophic lateral sclerosis patients. Neurol Sci 31(6):735–740

    Article  Google Scholar 

  13. Hogden A, Foley G, Henderson RD, James N. Amyotrophic lateral sclerosis : improving care with a multidisciplinary approach. J Multidiscip Healthc. 2017;205–15.

  14. Aoun SM, Connors S, Priddis L, Breen LJ, Colyer S. Motor neurone disease family carers ’ experiences of caring , palliative care and bereavement : an exploratory qualitative study. 2015;26(6):842–50

  15. Cipolletta S, Amicucci L (2015) The family experience of living with a person with amyotrophic lateral sclerosis : a qualitative study. Int J Psychol 50(4):288–294

    Article  Google Scholar 

  16. de Wit J, Beelen A, van den Heerik MS, van den Berg LH, Visser-Meily JMA, Schröder CD. Psychological distress in partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: what’s the role of care demands and perceived control? Psychol Heal Med [Internet]. 2020;25(3):319–30. Available from: https://doi.org/10.1080/13548506.2019.1686646

  17. Pagnini F, Lunetta C, Banfi P, Rossi G, Gorni K, Molinari E. Anxiety and depression in patients with amyotrophic lateral sclerosis and their caregivers. 2012;79–87.

  18. Gauthier A, Vignola A, Calvo A, Cavallo E, Moglia C, Sellitti L, et al. A longitudinal study on quality of life and depression in ALS patient – caregiver couples. 2007;15–9.

  19. Rabkin JG, Wagner GJ, Del Bene M (2000) Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosom Med 62(2):271–279

    Article  CAS  Google Scholar 

  20. Pagnini F, Simmons Z, Corbo M, Molinari E (2012) Amyotrophic lateral sclerosis: time for research on psychological intervention? Amyotroph Lateral Scler 13(5):416–417

    Article  Google Scholar 

  21. Gould RL, Coulson MC, Brown RG, Goldstein LH, Al-Chalabi A, Howard RJ (2015) Psychotherapy and pharmacotherapy interventions to reduce distress or improve well-being in people with amyotrophic lateral sclerosis: a systematic review. Amyotroph Lateral Scler Front Degener 16(5–6):293–302

    Article  Google Scholar 

  22. Bentley B, O’Connor M, Kane R, Breen LJ (2014) Feasibility, acceptability, and potential effectiveness of dignity therapy for people with motor neurone disease. PLoS ONE 9(5):1–8

    Article  Google Scholar 

  23. Palmieri A, Kleinbub JR, Calvo V, Sorarù G, Grasso I, Messina I, et al. Efficacy of hypnosis-based treatment in amyotrophic lateral sclerosis: a pilot study. Front Psychol. 2012;3(NOV):1–6.

  24. Kleinbub JR, Palmieri A, Broggio A, Pagnini F. Hypnosis-based psychodynamic treatment in ALS : a longitudinal study on patients and their caregivers. 2015;6(June):1–14

  25. Palmieri A, Kleinbub JR, Pagnini F, Sorarù G, Cipolletta S. Empathy-based supportive treatment in amyotrophic lateral sclerosis: a pragmatic study. Am J Clin Hypn [Internet]. 2021;63(3):202–16. Available from: https://doi.org/10.1080/00029157.2020.1797623

  26. Jensen MP, Smith AE, Bombardier CH, Yorkston KM, Mir J, Molton IR (2013) Social support, depression, and physical disability : age and diagnostic group effects. Disabil Health J 7(2):164–172

    Article  Google Scholar 

  27. Parkyn H, Coveney J (2011) Child : An exploration of the value of social interaction in a boys ’ group for adolescents with muscular dystrophy. Child Care Health Dev 39(1):1–9

    Google Scholar 

  28. Kirk S, Milnes L (2016) An exploration of how young people and parents use online support in the context of living with cystic fibrosis. Heal Expect 19(2):309–321

    Article  Google Scholar 

  29. Macdonald K, Greggans A (2010) ‘ Cool friends ’: an evaluation of a community befriending programme for young people with cystic fibrosis. J Clin Nurs 19(17–18):2406–2414

    Article  Google Scholar 

  30. Meade O, Buchanan H, Coulson N. The use of an online support group for neuromuscular disorders : a thematic analysis of message postings analysis of message postings. 2017;8288(June)

  31. Cipolletta S, Gammino GR, Francescon P, Palmieri A. Mutual support groups for family caregivers of people with amyotrophic lateral sclerosis in Italy : a pilot study. 2018;(January):556–63

  32. Locock L, Brown JB. Social Science & Medicine ‘ All in the same boat ’ ? Patient and carer attitudes to peer support and social comparison in motor neurone disease ( MND ). Soc Sci Med [Internet]. 2010;71(8):1498–505. Available from: https://doi.org/10.1016/j.socscimed.2010.06.043

  33. Madsen LS, Jeppesen J, Handberg C. “ Understanding my ALS ”. Experiences and reflections of persons with amyotrophic lateral sclerosis and relatives on participation in peer group rehabilitation. Disabil Rehabil [Internet]. 2018;0(0):1–9. Available from: https://doi.org/10.1080/09638288.2018.1429499

  34. De Wit J, Beelen A, Drossaert CHC, Kolijn R, Van Den Berg LH, SchrÖder CD et al (2020) Blended psychosocial support for partners of patients with ALS and PMA: results of a randomized controlled trial. Amyotroph Lateral Scler Front Degener 21(5–6):344–354

    Article  Google Scholar 

  35. Corbin J, Strauss A. Basics of qualitative research: techniques and procedures for developing grounded theory. Sage Publications;

  36. Pietkiewicz I, Smith JA, Pietkiewicz I, Smith JA. A practical guide to using interpretative phenomenological analysis in qualitative research psychology. 2014;(2012):7–14

  37. Brooks BR, Miller RG, Swash M, Munsat TL (2000) El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler 1(5):293–299

    CAS  Google Scholar 

  38. Siciliano M, Trojano L, Trojsi F, Greco R, Santangelo G (2017) Edinburgh Cognitive and Behavioural ALS Screen ( ECAS ) - Italian version : regression based norms and equivalent scores. Neurol Sci 38(6):1059–1068

    Article  Google Scholar 

  39. Measso G, Cavarzeran F, Zappalà G, Lebowitz BD, Crook TH, Pirozzolo FJ et al (1993) The Mini-Mental State Examination: normative study of an Italian random sample. Dev Neuropsychol 9(2):77–85

    Article  Google Scholar 

  40. Charmaz K. Constructing grounded theory: a practical guide through Qualitative. 2014379.

  41. Passoni S, Moroni L, Toraldo A, Mazza MT, Bertolotti G, Vanacore N, et al. Cognitive behavioral group intervention for Alzheimer caregivers. Alzheimer Dis Assoc Disord [Internet]. 2014;28(3):275–82. Available from: https://doi.org/10.1097/WAD.0000000000000033

  42. Marconi A, Gragnano G, Lunetta C, Gatto R, Fabiani V, Tagliaferri A et al (2016) The experience of meditation for people with amyotrophic lateral sclerosis and their caregivers – a qualitative analysis. Psychol Heal Med 21(6):762–768

    Article  Google Scholar 

  43. Galin S, Heruti I, Barak N, Gotkine M. Hope and self-efficacy are associated with better satisfaction with life in people with ALS. Amyotroph Lateral Scler Front Degener [Internet]. 2018;19(7–8):611–8. Available from: https://doi.org/10.1080/21678421.2018.1476546

  44. Hsieh S, Leyton CE, Caga J, Flanagan E, Kaizik C, OConnor CM, et al. The evolution of caregiver burden in frontotemporal dementia with and without amyotrophic lateral sclerosis. J Alzheimer’s Dis. 2015;49(3):875–85.

  45. Bungener C (2012) Les émotions et la sclérose latérale amyotrophique : une perspective psychopathologique. Geriatr Psychol Neuropsychiatr Vieil 10(1):57–64

    PubMed  Google Scholar 

  46. Walklet E, Muse K, Meyrick J, Moss T (2016) Do psychosocial interventions improve quality of life and wellbeing in adults with neuromuscular disorders? A systematic review and narrative synthesis. J Neuromuscul Dis 3(3):347–362

    Article  Google Scholar 

  47. Abrahams S, Borasio GD, Carvalho M De, Chio A, Damme V, Hardiman O, et al. EFNS GUIDELINES EFNS guidelines on the clinical management of amyotrophic lateral sclerosis ( MALS ) – revised report of an EFNS task force. 2012;

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Acknowledgements

We would like to give special thanks to our participants who graciously gave their time to take part in this study. We are also grateful to Agata Lax, Antonietta Vecera, Cecilia Vitucci, Chiara Valota, and Salvatore D’Ascenzo for their suggestions and support across the psychoeducational groups.

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Authors and Affiliations

  1. Department of Psychology, Catholic University of the Sacred Heart, Largo A. Gemelli 1, 20123, Milan, Italy

    Vittoria Anita Bilenchi, Francesco Pagnini & Eleonora Volpato

  2. IRCCS Fondazione Don Carlo Gnocchi, Milan, Italy

    Paolo Banfi & Eleonora Volpato

  3. Department of Psychology, Harvard University, Cambridge, MA, USA

    Francesco Pagnini

Authors
  1. Vittoria Anita Bilenchi
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  2. Paolo Banfi
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  3. Francesco Pagnini
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  4. Eleonora Volpato
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Contributions

All authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by Vittoria Anita Bilenchi, Eleonora Volpato, and Francesco Pagnini. The first draft of the manuscript was written by Vittoria Anita Bilenchi, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Vittoria Anita Bilenchi.

Ethics declarations

Ethical approval

This study was conducted in accordance with the principles of Helsinki Declaration and approved by the Ethics Committee of IRCCS Fondazione Don Carlo Gnocchi of Comitato Etico Regione Lombardia, Milan (Italy), on 21 June 2018.

Consent to participate

Informed consent was obtained from all individual participants included in the study.

Conflict of interest

The authors declare no competing interests.

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Bilenchi, V.A., Banfi, P., Pagnini, F. et al. Psychoeducational groups for people with Amyotrophic Lateral Sclerosis and their caregiver: a qualitative study. Neurol Sci 43, 4239–4255 (2022). https://doi.org/10.1007/s10072-022-05930-2

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  • DOI: https://doi.org/10.1007/s10072-022-05930-2

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