title: Conceptual and design issues in instrument development for research with bereaved parents.
abstract: Many childhood deaths in the United States occur in pediatric intensive care units (PICUs) and parents have special needs in this death context. As an interdisciplinary research team, we discuss conceptual and design issues encountered in creating a new instrument, the Bereaved Parent Needs Assessment-PICU, for assessing parents' needs in this setting. Using a qualitative approach, our team previously explored how the culture and related ways of providing care in one urban Midwestern children's hospital PICU affected parents' bereavement needs and experiences. We describe using this qualitative foundation in the development of a new quantitative instrument to more widely validate and measure bereaved parents' needs around the time of a child's death across multiple PICUs. We highlight a series of issues that warrant consideration in designing a research instrument for this vulnerable population including setting and context, format and content, temporality, recruitment, and content expertise.
authors.affiliation: Department of Anthropology, Wayne State University, Detroit, Michigan 48202, USA. s.briller@wayne.edu
authors.forename: Sherylyn H
authors.initials: SH
authors.lastname: Briller
authors.forename: Stephanie Myers
authors.initials: SM
authors.lastname: Schim
authors.forename: Celia S
authors.initials: CS
authors.lastname: Thurston
authors.forename: Kathleen L
authors.initials: KL
authors.lastname: Meert
mesh_terms: D000223:Adaptation, Psychological; D001291:Attitude of Health Personnel; D001601:Bereavement; D002648:Child; D005260:Female; D006301:Health Services Needs and Demand / Q000458:organization & administration*; D006801:Humans; D015278:Intensive Care Units, Pediatric; D007407:Interviews as Topic; D008297:Male; D015146:Midwestern United States; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D011368:Professional-Family Relations; D015397:Program Evaluation; D036301:Qualitative Research; D011795:Surveys and Questionnaires / Q000592:standards*; D014342:Truth Disclosure; D014481:United States