Growing up in the shadow of parental amyotrophic lateral sclerosis - Children’s and parents’ experiences informing a future family support intervention

Abstract

Background: When a parent is diagnosed with amyotrophic lateral sclerosis (ALS), the illness profoundly impacts the entire family and disrupts everyday life. As the disease progresses, the ill parent becomes increasingly dependent on others, often including their children. Despite this, knowledge of families’ lived experiences and support needs in the context of ALS remains limited. Overall aim: The overall aim of the thesis was to explore what it means for children to live with a parent with ALS, the meaning of parenthood in this context, and existing and needed support. Methods: Studies I–III are based on qualitative interviews with children (n = 11), ill parents (n = 13), and co-parents (n = 13), analysed using phenomenological hermeneutics and qualitative content analysis. Study IV is a scoping review systematically mapping studies published between 2013 and 2025 on support interventions for families where a parent has a life-threatening illness. Findings: Parental ALS entails a gradual transformation of family life, reshaping roles, relationships, and routines within a life marked by uncertainty, worry, and grief. For children, living with a parent with ALS involves multiple grief-filled and demanding transitions, as they struggle to maintain everyday life while facing ongoing loss. Parenthood is also disrupted, as both ill parents and co-parents strive to remain present while trying to handle emotional strain and increasing responsibilities. Children’s support needs involve enhancing manageability, making their needs visible, forming a protective social network, and strengthening the family. The scoping review included 15 articles describing six interventions targeting children, parents, or the family as a whole, comprising psychoeducational, psychosocial, and peer-based components. A lack of structured interventions was evident, particularly in progressive neurological diseases. Conclusions: By integrating children’s and parents’ lived experiences with a mapping of existing support interventions, this thesis provides a foundation for developing tailored, family-centred support within ALS care. Children need to be actively involved and supported in understanding the illness, parents require guidance in their parenting role, and families need support in navigating everyday life and finding meaning together. These findings highlight the importance of early, structured, and coordinated support, integrated into routine ALS care and provided proactively throughout the illness course.