title: Patient and parent/guardian perspectives on the health care of adults with mental retardation.
abstract: Individuals with mental retardation and their parents/guardians have long been neglected in health care research. In this study we used a qualitative methodology to describe the experiences adults with mental retardation and their parents/guardians have with the delivery of primary care services. Semi-structured in-depth interviews were conducted with 12 adults who had mental retardation and 9 parents/guardians. The grounded theory approach was utilized to guide data collection and analysis. Findings suggest an overall positive experience with primary care services. Unique themes were identified that distinguished parent/guardian experiences from those of adults with mental retardation, who focused on immediate, concrete issues related to service delivery, whereas parents/ guardians focused on more peripheral or abstract issues related to the delivery of primary care.
authors.affiliation: SVHORREL@uwyo.edu
authors.forename: Sarah C
authors.initials: SC
authors.lastname: Voss Horrell
authors.forename: William E
authors.initials: WE
authors.lastname: Maclean
authors.forename: Virginia M
authors.initials: VM
authors.lastname: Conley
mesh_terms: D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D006302:Health Services Research; D006801:Humans; D008607:Intellectual Disability / Q000628:therapy*; D007407:Interviews as Topic; D007872:Legal Guardians / Q000523:psychology*; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D017060:Patient Satisfaction; D019989:Persons with Intellectual Disabilities / Q000523:psychology*; D011320:Primary Health Care / Q000592:standards*