Bibliographic Details
| Title: |
Content validity of the PROMIS® pediatric family relationships measure for children with chronic illness |
| Authors: |
Kathryn E. Flynn, Harald Kliems, Nikita Saoji, Jacob Svenson, Elizabeth D. Cox |
| Source: |
Health and Quality of Life Outcomes, Vol 16, Iss 1, Pp 1-8 (2018) |
| Publisher Information: |
BMC, 2018. |
| Publication Year: |
2018 |
| Collection: |
LCC:Computer applications to medicine. Medical informatics |
| Subject Terms: |
Qualitative, Content validity, Pediatric, Quality of life, Family relationships, Family interactions, Computer applications to medicine. Medical informatics, R858-859.7 |
| More Details: |
Abstract Background 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. 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. Methods We 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). Results Family 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. Conclusions Among 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. |
| Document Type: |
article |
| File Description: |
electronic resource |
| Language: |
English |
| ISSN: |
1477-7525 |
| Relation: |
http://link.springer.com/article/10.1186/s12955-018-1030-8; https://doaj.org/toc/1477-7525 |
| DOI: |
10.1186/s12955-018-1030-8 |
| Access URL: |
https://doaj.org/article/3c8cb608c04d4cbda58ff0809fa44cd3 |
| Accession Number: |
edsdoj.3c8cb608c04d4cbda58ff0809fa44cd3 |
| Database: |
Directory of Open Access Journals |
