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 |