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Table 2 Overview of themes and subthemes

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

Themes Subthemes Definitions
Transformations in family life due to ALS Transformations in the family home Changes in the home setting (e.g., home modifications) that impact on parents’/children’s everyday life
Transformations in family activities Impact of the ALS situation on family activities that are undertaken (e.g., leisure trips, holidays)
Transformations in family roles Changes that occur in the division of family roles (e.g., caregiving, household tasks)
Transformations in family relationships Changes that occur in the ways in which family members relate to, interact with and support each other
The struggle of living with ALS Distress towards self Extent to which the parent/child experiences distress towards the self
Distress towards others Extent to which the parent/child experiences distress towards other family members
Distress towards family functioning Extent to which the parent/child has concerns with regard to family functioning
Families’ needs and resources for creating a supportive environment Emotional support needs The types of support that parents/children seek to be able to deal with emotions that arise from the ALS situation and to make meaning of the ALS situation
Psychological support needs The types of support that parents/children seek to be able to cope with/adapt to the transformations in life imposed by the ALS situation
Educational support needs Education about ALS, its prognosis and treatment sought by parents/children at the time of diagnosis and throughout the course of disease
Practical support needs The types of practical assistance that parents/children seek to be able to reduce their burden