The family experiences of in-hospital care questionnaire in severe traumatic brain injury (FECQ-TBI): a validation study

BACKGROUND: Family members are important for support and care of their close relative after severe traumas, and their experiences are vital health care quality indicators. The objective was to describe the development of the Family Experiences of in-hospital Care Questionnaire for family members of patients with severe Traumatic Brain Injury (FECQ-TBI), and to evaluate its psychometric properties and validity. METHODS: The design of the study is a Norwegian multicentre study inviting 171 family members. The questionnaire developmental process included a literature review, use of an existing instrument (the parent experience of paediatric care questionnaire), focus group with close family members, as well as expert group judgments. Items asking for family care experiences related to acute wards and rehabilitation were included. Several items of the paediatric care questionnaire were removed or the wording of the items was changed to comply with the present purpose. Questions covering experiences with the inpatient rehabilitation period, the discharge phase, the family experiences with hospital facilities, the transfer between departments and the economic needs of the family were added. The developed questionnaire was mailed to the participants. Exploratory factor analyses were used to examine scale structure, in addition to screening for data quality, and analyses of internal consistency and validity. RESULTS: The questionnaire was returned by 122 (71%) of family members. Principal component analysis extracted six dimensions (eigenvalues > 1.0): acute organization and information (10 items), rehabilitation organization (13 items), rehabilitation information (6 items), discharge (4 items), hospital facilities-patients (4 items) and hospital facilities-family (2 items). Items related to the acute phase were comparable to items in the two dimensions of rehabilitation: organization and information. All six subscales had high Cronbach’s alpha coefficients >0.80. The construct validity was confirmed. CONCLUSION: The FECQ-TBI assesses important aspects of in-hospital care in the acute and rehabilitation phases, as seen from a family perspective. The psychometric properties and the construct validity of the questionnaire were good, hence supporting the use of the FECQ-TBI to assess quality of care in rehabilitation departments. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12913-016-1884-6) contains supplementary material, which is available to authorized users.