Parental and child adjustment to amyotrophic lateral sclerosis: transformations, struggles and needs

Abstract

Background Amyotrophic lateral sclerosis (ALS), progressive muscular atrophy (PMA) and primary lateral sclerosis (PLS), together referred to as ALS, are life-limiting diagnoses affecting not only patients but also the families surrounding them, especially when dependent children are involved. Despite previous research highlighting the vulnerability of children in these families, they are, as yet, often overlooked in healthcare. Efforts are needed to better support children in families living with ALS, both directly and through strengthening parents in their parental role. This study sought to gain a better understanding of parental and children’s experiences, struggles and support needs in families living with ALS. Methods Semi-structured interviews were conducted with 8 parents with ALS, 13 well parents and 15 children, together representing 17 families. Interview data were analyzed using qualitative content analysis. Results Three major themes were identified relating to (1) ALS-related transformations in families’ homes, activities, roles and relationships, that trigger (2) distress among families, which, in turn, evokes (3) emotional, psychological, educational and practical support needs. For emotional and practical support, parents and children mainly rely on their own family and social network, whereas they seek educational and psychological support from healthcare professionals. Conclusions Our findings imply that ALS care professionals may foster family adjustment to living with ALS, most notably through encouraging parents to engage in a dialogue with their children about the many transformations, struggles and needs imposed by ALS and teaching them how to start the dialogue.

Exploring amyotrophic lateral sclerosis patients’ experiences of psychological distress during the disease course in China: a qualitative study

“… 21–24 They explore the experiences of ALS patient caregivers, revealing the economic, emotional and physical burdens they encounter. 25–27 Healthcare professionals often approach ALS from the perspectives of clinical treatment efficacy, personalised prognosis, rehabilitation therapy and feasibility of care plans. 28–30 However, there is a lack of research into the psychological distress experienced by ALS patients throughout the disease process.…”