Abstract
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. 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). 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. 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.
Highlights
Amyotrophic Lateral Sclerosis (ALS) is a neurodegenerative disease that strongly impacts both patients’ and caregivers’ lives
The analysis of the interviews allowed to deduce the main reasons to participate, the positive and negative aspects of the experiences. These results suggested the usefulness of psycho-educational groups into the regular clinical practice to allow patients and caregivers comparison with others in the same situation
Amyotrophic Lateral Sclerosis (ALS) is a neurodegenerative disease with unknown aetiology characterized by the progressive loss of lower and upper motor neurons (Chiò, Benzi, Dossena, Mutani, & Mora, 2005; Zarei et al, 2015)
Summary
Amyotrophic Lateral Sclerosis (ALS) is a neurodegenerative disease that strongly impacts both patients’ and caregivers’ lives. Few previous studies investigated the psychosocial impact of group’s interventions on ALS patients and their caregivers as well as needs they can answer. There is limited information on the efficacy of group interventions, previous studies suggest the potentially positive impact of group interventions in people who is facing chronic diseases (Jensen et al, 2013; Kirk & Milnes, 2016; Macdonald & Greggans, 2010; Meade, Buchanan, & Coulson, 2017; Parkyn & Coveney, 2011). Previous studies had analysed psychological group intervention, providing some information regarding coping strategies used by people facing ALS and their caregivers (Cipolletta, Gammino, Francescon, & Palmieri, 2018; Locock & Brown, 2010; Madsen, Jeppesen, & Handberg, 2018). The first study that analysed support group participation in Italy has been conducted by Cipolletta et al (2018), showing that caregivers’ experience is different for partners or children and that they had the opportunity to express feeling and experiences without being judged from others (Cipolletta et al, 2018)
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