Qualitative Analysis of Parental Observations on Quality of Life in Australian Children with Down Syndrome

Abstract

Objective There are many challenges to health, functioning and participation for children with Down syndrome yet the quality of life (QOL) domains important for this group have never been clearly articulated. This study investigated parental observations to identify QOL domains in children with Down syndrome and determined whether domains differed between children and adolescents. Method The sample comprised 17 families whose child with Down syndrome was aged 6–18 years. Primary caregivers took part in semi-structured telephone interviews to explore aspects of their child’s life that were satisfying or challenging. Qualitative thematic analysis was implemented using a grounded theory framework to identify domains. The coded dataset was divided into two groups (childhood and adolescence) at three age cut-points to observe whether differences existed between the coded domains and domain elements: (1) 6 to 11 years with 12 to 18 years; (2) 6 to 13 years with 14 to 18 years; and (3) 6 to 15 years with 16 to 18 years. Results Eleven domains were identified: physical health, behavior and emotion, personal value, communication, movement and physical activity, routines and predictability, independence and autonomy, social connectedness and relationships, variety of activities, nature and outdoors, and access to services. No differences in domains and domain elements were identified across childhood and adolescence. Conclusion Our data form a preliminary framework from which to design investigations of the child’s perspectives on life quality and suggest a range of necessary supports and services.

Exploring quality of life of children with cerebral palsy and intellectual disability: What are the important domains of life?

“…ID in children appeared to be associated with commonalities for QOL that are not restricted to a specific diagnosis. Similar to our study with Down syndrome (Murphy et al, ), we did not observe differences in the domains reported for children or adolescents.…”

“…For example, the CP QOL‐Child assesses emotional well‐being through how the child feels about themselves and their opportunities, although the current study suggests suitable items for a new measure would need to take into account behaviours such as frequency of smiling and those that indicate frustration, problems with impulse control, and aggression. Furthermore, the CP QOL‐Child omits potentially important domains of “predictability and routine” and “nature and outdoors.” In contrast, the domains identified in our study were remarkably consistent with those identified for children with Rett (Epstein et al, ) and Down syndromes (Murphy et al, ). ID in children appeared to be associated with commonalities for QOL that are not restricted to a specific diagnosis.…”

“…We have previously identified domains of QOL important to children with Rett (Epstein et al, ) and Down (Murphy et al, ) syndromes by coding parent‐reported observations that indicated the child's pleasure, satisfaction, or challenge with different aspects of their life. More information is needed about the areas of life that are important for children with CP who also have ID.…”

Parent‐reported health‐related quality of life of children with Down syndrome: a descriptive study

“…Eleven domains were identified as important for children with Down syndrome including physical health, behaviour and emotion, personal value, communication, movement and physical activity, routines and predictability, independence and autonomy, social connectedness and relationships, variety of activities, nature and outdoors, and access to services. These parent‐reported domains provided rich descriptions of life experiences across the range of functional abilities found in Down syndrome and only data that were observable were coded to limit the reporting of parental emotion . The KIDSCREEN‐27 questionnaire arguably only includes four of these domains (physical well‐being; psychological well‐being; autonomy and parent relation; social support and peers) and therefore probably does not provide a complete picture of quality of life for children with Down syndrome.…”

What are the perspectives of adolescents with Down syndrome about their quality of life? A scoping review

“…QOL assessment methods can be quantitative (Gomez, Verdugo, & Arias, ), qualitative (Murphy et al, ) or mixed method (Leonard et al, ). Assessment of individual well‐being and quality of life includes how a person perceives the physical, psychological and social dimensions of their lives.…”