Transformed Parenthood in the Face of ALS: A Profound Struggle for Both Ill Parents and Co-parents

When a parent is diagnosed with a progressive, fatal neurodegenerative disease, such as amyotrophic lateral sclerosis (ALS), it can have major effects on the family's health. Parenthood itself may also be affected, potentially fueling an urgent need for support from healthcare. Research focusing on this group of parents is nevertheless limited. The aim of this study was to illuminate the meaning of parenthood when a parent has ALS, from the perspective of ill parents and co-parents. An interpretive qualitative study was conducted, using data gathered from interviewing 26 parents (13 ill parents and 13 co-parents) with children living at home in Sweden. Applying a phenomenological hermeneutical analysis, structural analyses depicted the burdensome, complex impact that ALS can have on parenthood, redefining its meaning while forcing parents to face the difficult challenges it brings. The interpreted whole revealed how navigating this transformed parenthood meant a profound struggle, as the parents strived to balance their own emotional pain from grief and worry with remaining stable and supportive for their children. To promote the health of families affected by ALS, more proactive, tailored support is needed within ALS nursing, along with early integration of a palliative approach and attention to the parental perspective.