Abstract
BackgroundFamilies play a critical role in supporting the health and well-being of children with chronic illnesses, who face a lifetime of responsibility for self-management of their condition. Our goal was to investigate whether the novel Patient-Reported Outcomes Measurement Information System® (PROMIS®) Pediatric Family Relationships measure, developed primarily within the general pediatric population, reflects the experiences of family relationships for chronically ill children and their parents.MethodsWe conducted semi-structured qualitative interviews with children (aged 8–17) with common chronic conditions: asthma (n = 6), type 1 diabetes (n = 5), or sickle cell disease (n = 5), and separately with one of their parents (n = 16). Interviews were recorded, and two team members independently coded the written transcripts facilitated by Nvivo 10. The systematic content analysis used a combination of: 1) pre-specified themes corresponding to the six facets of the domain identified during measure development and reflected in the content of the items (i.e., Sense of Family; Love and Caring; Value and Acceptance; Trust, Dependability, and Support; Communication; Enjoyment), as well as 2) open-coding, allowing participants to define important concepts (i.e., disease impact).ResultsFamily relationships were conceptualized in a similar way to the general population, as evidenced by child and parent responses to open-ended questions about family relationships and to specific probes that corresponded with the item content in the Family Relationship 8-item short form. Children spontaneously discussed the impact of their disease on family relationships less often than parents did. Although participants described how living with a chronic illness positively and negatively impacted aspects of family relationships, nearly all participants believed their responses to the PROMIS® Family Relationships items would not change if they (or their child) did not have a chronic illness.ConclusionsAmong a sample of families of children with one of 3 chronic illnesses, participants described family relationships in a way that was consistent with the facets of the PROMIS® Family Relationship domain. This study adds to the content validity of the measure for children with chronic illness.
Highlights
Families play a critical role in supporting the health and well-being of children with chronic illnesses, who face a lifetime of responsibility for self-management of their condition
To assess whether chronically ill children and their parents conceptualize family relationships in a manner similar to the general population of children and parents, we describe the themes found in the interviews and report the occurrence of each theme across interviews categorized by role and disease type
Themes Our final set of codes comprised the themes described by the six facets of the PROMIS® Family Relationships domain plus additional themes of family composition and the health and disease experience (Table 2)
Summary
Families play a critical role in supporting the health and well-being of children with chronic illnesses, who face a lifetime of responsibility for self-management of their condition. The National Institutes of Health (NIH) Patient-Reported Outcomes Measurement Information System® (PROMIS®) supported the development of an item bank describing children’s experience with their families, the PROMIS® Pediatric Family Relationships measure. It is intended for children aged 8–17 years (self-report) and parents of children aged 5–17 years (parent report). Development of the PROMIS® Family Relationships measure included literature and extant measure review, formative qualitative interviews for concept elicitation with 10 experts as well as with 8 parents and 24 children. Evidence is needed regarding whether this new measure reflects the experiences of family relationships for chronically ill children and their parents
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