Functioning and disability in traumatic brain injury: The Italian patient perspective in developing ICF Core Sets

Objective.The purpose of the study was to explore the aspects of functioning and health relevant to patients with traumatic brain injury (TBI) and to the caregivers of TBI patients explicitly involved in the preliminary study for the Development of the ICF Core Set for TBI using a qualitative research method. Method.The sampling of patients followed the maximum variation strategy. To respect this strategy, we involved patients with different degrees of impairment and so, for some people it was not possible to join the group because of their severe cognitive impairment, in this case we interviewed their caregivers. The focus groups were digitally recorded and transcribed verbatim. The meaning condensation procedure was used for the data analysis. After qualitative data analyses, the resulting concepts were linked to ICF categories according to established linking rules. Results.Eighteen focus groups and five single interviews were performed. Forty-one patients participated in 10 focus groups. Thirty-three caregivers participated in eight focus group and six caregivers underwent a single interview. Saturation at 10%% cutoff was reached. Based on 10 patient focus groups, we linked the concepts to 144 2nd level ICF different categories. In the eight focus group with caregiver we linked the concepts to129 2nd level categories. In the single interviews, we could link the concepts only to Environmental factors and we linked to 25 ICF different categories. Conclusion.A broad range of aspects of functioning and health as well as several Environmental factors important to patients with TBI were explored and included in the preparatory phase of the development of ICF Core Sets for TBI. Whereas patients focused on problems in mobility, employment and recreation and leisure the caregivers highlighted several issues related to self-care as being important for the patients.