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

Marion Sommers-Spijkerman*, Neele Rave, Esther Kruitwagen-van Reenen, Johanna M.A. Visser-Meily, Melinda S. Kavanaugh, Anita Beelen

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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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.

Original languageEnglish
Article number72
Pages (from-to)1-15
JournalBMC psychology
Volume10
Issue number1
DOIs
Publication statusPublished - 17 Mar 2022

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

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