The lived experience of Maltese informal caregivers of individuals living with amyotrophic lateral sclerosis in the community

Abstract

Amyotrophic lateral sclerosis [ALS] is a rare, progressive neurodegenerative condition that imposes immense physical, emotional, and social challenges on both patients and their informal caregivers. While international research has illuminated the psychological distress, anticipatory grief, and adaptive resilience of caregivers, little is known about these experiences within small-island nations such as Malta, where caregiving is shaped by strong family ties, communal networks, and Catholic traditions. This qualitative study aimed to explore and interpret the lived experiences of Maltese informal caregivers providing community-based care to individuals diagnosed with ALS. Grounded in Heideggerian phenomenology and operationalised through Interpretative Phenomenological Analysis [IPA], the study involved semi-structured interviews with ten purposively selected caregivers recruited through ALS Malta and Dar Bjorn. Interviews were conducted in English or Maltese, transcribed verbatim, and analysed iteratively, guided by the Transactional Theory of Stress and Coping [TTSC] (Lazarus & Folkman, 1984) to interpret caregivers’ appraisals of stressors and coping mechanisms. Four overarching Group Experiential Themes [GETs] were identified: Living with Uncertainty and Loss, capturing the emotional turbulence of anticipatory grief, exhaustion, and the ongoing suppression of personal needs; Caregiving as an All-Encompassing Role, reflecting the profound transformation of identity as familial relationships shift into full caregiving responsibilities; Coping and Finding Strength, highlighting the ways caregivers draw on faith, spirituality, and family solidarity to sustain hope and resilience; and Negotiating Support and Services, encompassing the struggle for recognition, the invisibility of caregivers, and the challenges posed by fragmented or inconsistent service provision. Collectively, these themes illustrate the duality of burden and resilience within the caregiving experience, as participants continually reappraised challenges while mobilising emotional and social resources to maintain stability. The findings underscore significant gaps in formal support and coordination within Maltese health and social care systems, revealing the need for more integrated, culturally sensitive, and accessible services for caregivers of persons living with ALS. Policy implications include the development of structured caregiver education, psychosocial support initiatives, and recognition frameworks that validate caregivers as essential partners in care. For nursing practice, the study highlights the importance of holistic, family-centred approaches that address emotional, spiritual, and informational needs. By capturing the depth of caregiving within a small-island context, this study contributes novel insights to global caregiving literature and provides an evidence base for improving caregiver well-being and the sustainability of community-based ALS care in Malta.