L’adéquation entre les besoins vécus par les proches de personnes ayant un traumatisme craniocérébral et les services offerts par le continuum de soins. Montréal

Statement of the problem The sudden occurrence of a traumatic brain injury (TBI) often results in major changes in the life of relatives on a short, medium or long term period. Few studies have shed light on the needs of these relatives and on the services offered through the trauma network that can meet these needs. This project was conducted in response to a call for proposal from the Société de l’assurance automobile du Québec (SAAQ), the Ministère de la santé et des services sociaux (MSSS) and the Réseau provincial de recherche en adaptation-réadaptation (REPAR) aiming at increasing knowledge and improving rehabilitation services and social integration in traumatology. These organizations have emphasized the need to better document the nature and intensity of the support needed by relatives of persons with a TBI and the benefit of the services offered. Objective The objective of this qualitative research is to describe the needs of relatives of persons with a TBI, satisfied or non satisfied by services offered in traumatology, in order to suggest solutions that are more appropriate according the relative’s life situation. Method Data was collected during a focus group using the ‘Démarche Réflexive d’Analyse en Partenariat (DRAP)’. The participants came from 2 Quebec’s regions : Montreal and Outaouais. The sample was composed of 12 relatives of persons diagnosed with a moderate or severe TBI and 20 health care professionals experienced with this clientele from different disciplines. Results The needs expressed by the participant as well as their recommendations highlight how relatives experience a TBI, their needs and whether the services actually offered are able to help them. The results showed that relatives want to be informed and supported at every stage of the recovery process when a TBI occurs. They are preoccupied by the accessibility of services for the person with the TBI. Furthermore, they are concerned by the lack of services available for themselves through the acute care, the rehabilitation and the community reintegration phases. The results allowed us to note regional differences with regards to the preoccupations of the relative in terms of needs, care and services. Therefore, in the Outaouais region, the most important need is the accessibility to care and services. This is followed by the need to be informed on care and services. However, in Montreal, the participants most important need is to get precise information followed by the need to have easy access to services and care. They also want to be part of the care plan of their relative with a TBI in order to facilitate their empowerment. Main recommendations The importance of providing information that is precise and pertinent has been emphasized by both relatives and healthcare professionals. Other important criteria that have been identified are the need to respect the relative’s rhythm in assimilating information and the importance of identifying a key-person (on the side of professionals) who can communicate this information. Professionals should make the relatives part of the intervention at every step and recognize their important contribution to care. Finally, participants recommended improvements in the accessibility to services on a long term basis for their relatives. These results and main recommendations should help the SAAQ, the MSSS and all the key players in their actions in order to support relatives of a person diagnosed with a TBI.

Keyphrases: services