Health Soc Care Community. 2020;00:1–8. wileyonlinelibrary.com/journal/hsc | 1 © 2020 John Wiley & Sons Ltd 1 | INTRODUCTION Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease af- fecting adults between 40 and 70 years of age, of both genders (1.5/1 males/females). The incidence of ALS in Europe and North America ranges between 1.5 and 2.7 per 100,000 per year, with a prevalence of 2.7–7.4 per 100,000 (Logroscino & Piccininni, 2019; Valadi, 2015). ALS is characterised by a progressive loss of upper and lower motor neurons associated with spastic hypertonia and hyposthenia (Foster & Salajegheh, 2019; Valadi, 2015), forcing, within 2–3 years from diagnosis, the use of movement aids up to the wheelchair (Foster & Salajegheh, 2019; Valadi, 2015). In addition to the motor symptoms, ALS occurs with bulbar symptoms such as dysphagia, dysarthria and respiratory failure (Foster & Salajegheh, 2019; Oh, Oh, & Kim, 2018). Received: 17 July 2019 | Revised: 24 June 2020 | Accepted: 27 July 2020 DOI: 10.1111/hsc.13142 ORIGINAL ARTICLE Going inside the relationship between caregiver and care-receiver with Amyotrophic Lateral Sclerosis in Italy, a Grounded Theory study Barbara Bassola 1 | Silvia Cilluffo 2 | Maura Lusignani 1,3 1 School of Nursing, University of Milan, Azienda Socio Sanitaria Territoriale Grande Ospedale Metropolitano Niguarda, Milan, Italy 2 Azienda Socio Sanitaria Territoriale Grande Ospedale Metropolitano Niguarda, Milan, Italy 3 Biomedical Science for Health Department, University of Milan, Milan, Italy Correspondence Barbara Bassola, Piazza Ospedale Maggiore 3, Milano 20162, Italy. Email: barbara.bassola@unimi.it Abstract People with amyotrophic lateral sclerosis become dependent on caregivers for daily activities and to perform self-care activities at home. The family caregiver has an important role in the care. The patient decides and controls care but depends on the caregiver to implement self-care behaviours. The quality of caregiver–patient rela- tionships could influence clinical outcomes, as it occurs in other illnesses, so the aim of this study was to investigate the relationship between the Amyotrophic Lateral Sclerosis patients and their family caregiver and how it impacts care, and patient and caregiver outcomes. We interviewed 22 patients/caregivers in a Neuromuscular Clinical Center in the South of Europe, between July and October 2018. A Grounded Theory approach was used, comprising line by line ‘initial coding’, memos writing, ‘focused coding’, advanced memos and categories definition. From the interviews three main categories emerged: ‘reciprocity’, ‘loving to care’ and ‘changing to care’ and four secondary categories: ‘having support’, ‘sharing suffering’, ‘protecting each other’ and ‘thinking positive’. A stable and calm relationship between patient and car- egiver, characterised by reciprocity, mutual help and affection affected patient self- care provided at home and the caregiver burden. The concept of mutuality seems to describe this relationship, despite the patient's dependence on the caregiver. The relationship with health professionals and educational interventions could influence the quality of the relationship. Further studies are needed to describe the quality of the relationship in this dyad, to investigate the presence of mutuality and how it af- fects patient and caregiver outcomes. KEYWORDS amyotrophic lateral sclerosis, family caregiving, grounded theory, health care education, mutuality, relationship