Parental and child adjustment to amyotrophic lateral sclerosis: transformations, struggles and needs
Sommers-Spijkerman, Marion; Rave, Neele; Kruitwagen-van Reenen, Esther; Visser-Meily, Johanna M.A.; Kavanaugh, Melinda S.; Beelen, Anita
(2022) BMC psychology, volume 10, issue 1, pp. 1 - 15
(Article)
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
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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.
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Keywords: Amyotrophic lateral sclerosis, Family, Parenting, Qualitative research, Support needs, Health Personnel/psychology, Parents/psychology, Amyotrophic Lateral Sclerosis/psychology, Humans, Family/psychology, Qualitative Research, Child, General Psychology, Journal Article
ISSN: 2050-7283
Publisher: BioMed Central Ltd.
Note: Funding Information: The authors received funding from the ALS Foundation Netherlands ( https://www.als.nl ), grant number AV20180015. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Publisher Copyright: © 2022, The Author(s).
(Peer reviewed)