Table 1.
Themes and corresponding subthemes of coding scheme.
Table 2.
Demographic and clinical characteristics by Down syndrome regression disorder and Down syndrome and other neurological conditions cohorts.
Fig 1.
Flow Diagram.
Table 3.
Responses of CDS items by DSRD and DSN caregiver groups.
Table 4.
Qualitative responses by DSRD and DSN caregiver groups.
Fig 2.
Percentage of Down syndrome regression disorder vs. Down syndrome with neurological condition caregivers per subtheme in adult friendships and social relationships.
Panel (a) presents the “Quality of Adult Friendships” subthemes, showing the percentage of caregivers for DSRD (dark blue bars) and DSN (light blue bars) experiencing the subthemes: “Social Withdrawal and Isolation,” “Emotional Fatigue of Caregivers,” and “Negative Mental Health Impact.” Panel (b) illustrates the “Social Relationships Impacted” subthemes, detailing the percentage of caregivers affected by “Social Withdrawal & Isolation,” “Caregiving Constraints,” “Behavioral Barriers & Stigma,” “Loss of Community Participation and/or Support,” and “Decreased Social Contacts.” Asterisks (*) indicate statistically significant differences between groups (p < 0.05).
Fig 3.
Percentage of Down syndrome regression disorder vs. Down syndrome with neurological condition caregivers per subtheme in spouse and partner impact and perceived shrinkage of social world.
Panel (a) shows the percentage of caregivers of DSRD vs. DSN groups for subthemes within the “Spouse/Partner Impact” theme, including “Emotional and Interpersonal Strain,” “Disagreements on Caregiving & Treatment,” “Lack of Time and Intimacy,” “Caregiving Stress-Related Relationship Deterioration,” and “Unequal Roles or Perceived Imbalance.” Panel (b) shows the percentages for subthemes within the “Perceived Shrinkage of Social World” theme, including “Time and Energy Constraints,” “Friends’ Discomfort or Inability to Relate,” “Reduced Invitations from Social Contacts,” “Shift to Condition-Specific Support Relationships,” and “Perceived Enduring Loss of Social Connections.” Asterisks (*) indicates statistically significant differences between groups (p < 0.05).
Table 5.
Qualitative findings on the social relationships of DSRD caregivers.