Psychoeducational groups for people with amyotrophic lateral sclerosis and their caregiver: a qualitative study
Open accessAbstract
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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By engaging in direct communication with fellow caregivers who share similar circumstances, individuals gain a deeper understanding of the emotions, experiences, and challenges associated with caregiving.
“By engaging in direct communication with fellow caregivers who share similar circumstances, individuals gain a deeper understanding of the emotions, experiences, and challenges associated with caregiving (Bilenchi et al., 2022; Khouban-Shargh et al., 2024).”
From Support based on psychoeducation intervention to address quality of life and care burden among caregivers of patients with cancer: a randomized controlled trial (2025) · cites this paper as Bilenchi et al., 2022
The Discussion (page unavailable) says sharing with people in the same situation was a frequent topic and a positive aspect of the groups. “Sharing as an opportunity” (page unavailable) reports that participants understood they were not alone. The paper supports peer sharing, but does not establish that direct communication gave caregivers a deeper understanding of caregiving emotions, experiences, and challenges. (LLM, conf=0.82)
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“Materials and methods Study design An explorative qualitative design was used [35, 36].”
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Mirhosseini, S., Imani Parsa, F., Moghadam-Roshtkhar, H., Basirinezhad, M. H., Ameri, M., & Ebrahimi, H. (2025) · Frontiers in Psychology · doi:10.3389/fpsyg.2025.1430371 · Cited by 14 · see citing works
“By engaging in direct communication with fellow caregivers who share similar circumstances, individuals gain a deeper understanding of the emotions, experiences, and challenges associated with caregiving (Bilenchi et al., 2022; Khouban-Shargh et al., 2024).”
- Authors
- Bilenchi, V. A., Banfi, P., Pagnini, F., & Volpato, E.
- Affiliations
- Università Cattolica del Sacro Cuore (IT)
- Don Carlo Gnocchi Foundation (IT)
- Corresponding author
- Bilenchi, Vittoria Anita
- Venue
- Neurological Sciences
- Published
- 2022-02-14
- Volume
- 43
- Issue
- 7
- Pages
- 4239-4255
- ISSN
- 1590-1874 (ISSN-L)
- 1590-3478
- OpenAlex
- W4225773521
- Cited by
- 14
- References
- 9
- Citations by year
- 2026: 1 · 2025: 2 · 2024: 6 · 2023: 4 · 2022: 1
- FWCI
- 4.86
- Type
- journal article
- Language
- en
- Open access
- green
- doi.org
- Locations
- Neurological Sciences (publishedVersion)
- Research Square (acceptedVersion, cc-by)
- PubMed (publishedVersion)
- Lirias (submittedVersion)
- Topics
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Keywords
- amyotrophic lateral sclerosis, psychoeducational groups, caregiver support, patient support, group intervention, emotion recognition, experience sharing, family relationships, caregiver self-care, patient needs, caregiver needs
- MeSH terms
- Psychosocial Support Systems, Adaptation, Psychological, Amyotrophic Lateral Sclerosis, Humans, Caregivers, Qualitative Research
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