Developing and Piloting an Instrument to Prioritize the Worries of Female Youth with a Physical Disability and...

The transition to adulthood is a worrying time for female youth with a physical disability and their mothers. We sought to develop an instrument to assess which transition-related worries are most (and least) worrisome to youth and mothers to inform transition preparation interventions.

A community-centered approach was used to identify and refine the most common transition-related worries of youth and mothers. A novel best-worst scaling (BWS) instrument was created in partnership with an advisory board of female youth with a physical disability and their mothers. BWS is a theory-driven survey method to identify priorities. The instrument was then pretested, refined, and piloted with youth and mothers. Findings were assessed by consultation with stakeholders.

After input from youth and mothers, 11 transition-related worries were included in the pilot instrument using an object case experimental design. Pilot testing was conducted with 22 youth and 16 mothers, including 3 mother-daughter dyads. The completion rate was 86% for youth and 100% for mothers. The instrument was sensitive enough to detect differences between youth and mothers at both the aggregate and dyad level. On aggregate, both youth and mothers worried more about health-related compared to social-related worries but differed on the prioritization of independence-related worries. Discussion of results with participants and an advocacy group confirmed the face validity of the findings.

Male youth and fathers were not included.

The novel BWS instrument is feasible for female youth and mothers to complete independently and was valid in prioritizing worries on the aggregate and dyad levels.

A subsequent large-scale study using the instrument may inform transition initiatives, while use among in a clinical setting may guide decision making.