Marie-Josée Levert

The experiences of individuals with a traumatic brain injury, families, physicians and health professionals regarding care provided throughout the continuum

Primary objective: To investigate the experiences of individuals who had sustained a traumatic brain injury, their families and the physicians and health professionals involved, from the critical care episodes and subsequent rehabilitation. Research design: Semi-structured interviews were conducted with individuals who had sustained a TBI (n = 8) and their families (n = 8) as well as with the health professionals (or service providers) (n = 22) and physicians (n = 9) who provided them care. Main outcomes and results: Results revealed the difficulties encountered by the different people involved, from the standpoint of the readjustment of the individual with the TBI and their family, the relationships among the various actors and the continuity of care. Conclusions: This study brings to light the importance of including the family and the person with a TBI in the care process by calling for their participation and by setting up suitable structures that prioritize a meaningful partnership among the key individuals.

Gender differences and simililarities in the experience of parenting a child with a health problem: current state of knowledge

The birth of a child is a transitional situation that triggers stress in the family and each person has to use adjustment strategies allowing them to reposition gradually in relation to themselves and other members of the family, and to make space for the new arrival. When the child has a health problem, the stress on the parents is correspondingly greater. Research shows that fathers and mothers of a child with a health problem experience this ordeal differently. This article reports on the current state of knowledge about the experience of fathers and mothers of a child with a health problem, and suggests new directions for research to provide a fuller understanding of their experience.

how do mothers and fathers who have a child with a disability describe their adaptation/ transformation process?

This qualitative study explored the adaptation/transformation process in mothers and fathers at the individual, parental, marital and extrafamilial levels, and the similarities and differences in their experience of living with a child with cerebral palsy. Interviews were conducted with 13 mothers and 13 fathers of children with cerebral palsy. The results show that mothers and fathers are more likely to view the situation differently than similarly. For both parents, the situation offers the potential for transformation. Complementarity between mothers and fathers is an important factor in each of the adaptation or transformation subsystems. Both parents embark on a journey that changes their beliefs about difference, apply their new knowledge to every aspect of their life, and endeavour to normalize their situation.

The close relatives of people who have had a traumatic brain injury and their special needs

Primary objective: This study aims to paint a picture of the needs of people close to individuals with a TBI and the services offered to answer these needs, from the point of view of the individuals with a TBI and health professionals. Research design: This study has a qualitative design and a reflexive group was used to collect data. The démarche réflexive d’analyse en partenariat, DRAP (developing reflexive analysis for partnership) was used as a data collection method. The sample comprised Montreal family members (n = 4), Outaouais family members (n = 8), Abitibi family members (n = 7); Montreal care providers (n = 9), Outaouais care providers (n = 11) and Abitibi care providers (n = 9). Main outcomes and results: The results show that people close to individuals with a TBI need information on the health problem, specifically with regard to the diagnostic, the prognostic, and the factors that influence it, as well as the steps towards rehabilitation, and care and services. The results show that close ones need specific, quality services and continuity of services. Conclusion: In conclusion, the pertinence of this study lies in the desire of close ones and health professionals to ease the adaptation process imposed by a TBI, and to promote the well-being of informal caregivers.

Effect of personalised citizen assistance for social participation (APIC) on older adults’ health and social participation: study protocol for a pragmatic multicentre randomised controlled trial (RCT)

Introduction The challenges of global ageing and the growing burden of chronic diseases require innovative interventions acting on health determinants like social participation. Many older adults do not have equitable opportunities to achieve full social participation, and interventions might underempower their personal and environmental resources and only reach a minority. To optimise current practices, the Accompagnement-citoyen Personnalisé d’Intégration Communautaire (APIC), an intervention demonstrated as being feasible and having positive impacts, needs further evaluation. Methods and analysis A pragmatic multicentre, prospective, two-armed, randomised controlled trial will evaluate: (1) the short-term and long-term effects of the APIC on older adults’ health, social participation, life satisfaction and healthcare services utilisation and (2) its cost-effectiveness. A total of 376 participants restricted in at least one instrumental activity of daily living and living in three large cities in the province of Quebec, Canada, will be randomly assigned to the experimental or control group using a centralised computer-generated random number sequence procedure. The experimental group will receive weekly 3-hour personalised stimulation sessions given by a trained volunteer over the first 12 months. Sessions will encourage empowerment, gradual mobilisation of personal and environmental resources and community integration. The control group will receive the publicly funded universal healthcare services available to all Quebecers. Over 2 years (baseline and 12, 18 and 24 months later), self-administered questionnaires will assess physical and mental health (primary outcome; version 2 of the 36-item Short-Form Health Survey, converted to SF-6D utility scores for quality-adjusted life years), social participation (Social Participation Scale) and life satisfaction (Life Satisfaction Index-Z). Healthcare services utilisation will be recorded and costs of each intervention calculated. Ethics and dissemination The Research Ethics Committee of the CIUSSS Estrie – CHUS has approved the study (MP-31-2018-2424). An informed consent form will be read and signed by all study participants. Findings will be published and presented at conferences. Trial registration number NCT03161860; Pre-results.

Accompanying citizen of persons with traumatic brain injury in a community integration project: An exploration of the role.

BACKGROUND The APIC (Citizen Accompaniment Project for Community Integration) is an innovative program that seeks to increase the community integration of people with a traumatic brain injury (TBI) by offering the support of an accompanying citizen (AC) in the accomplishment of significant life activities. OBJECTIVE This article aims to better define the ACs role in this process, by underlining the mental health risks they face, the strategies they use, and the impacts the role has on their own lives. METHODS This qualitative study is based on the analysis of interviews conducted with the AC following the first year of implementation. The data is part of a larger project aimed at the implementation and evaluation of APIC program. The data were analysed according to the rules of thematic content analysis, which encourages grouping main ideas into categories. This is an iterative process allowing for the constant emergence of new categories during the analysis. RESULTS Accompaniment is full of joys and positive moments for the AC and participants. However, some difficult situations are encountered and the AC are constantly faced with challenges and constraints. The emerging study themes are as follows: the environment, the characteristics of the person accompanied, the ACs personal limits, and the ambiguities in the accompanier-accompanied relationship. CONCLUSIONS Five principles drawn from the results will help oversee this practice more efficiently and limit the mental health risks of accompaniers. These findings may permit further development of this type of program for people living with disabilities.

Partenariat entre patients, leaders en soins infirmiers et chercheurs : résultats d’une stratégie web de transfert des connaissances pour planifier le congé d’hôpital et faciliter les transitions au cours des soins oncologiques

Un projet de recherche a reuni des patients partenaires, des leaders en soins infirmiers de six milieux cliniques du Quebec ainsi que des chercheurs en vue de developper et tester un outil web, le Portail d’echange des savoirs (PES), afin d’ameliorer les pratiques de planification des conges et les transitions au cours des soins oncologiques. Le projet a debouche sur la creation d’un PES axe sur l’oncologie ouvert a toute la francophonie. Il en a aussi emerge une strategie novatrice de transfert des connaissances (TC) prenant appui sur le PES et alimentee par le travail collaboratif des differents partenaires, parmi lesquels les patients ont tenu un role essentiel. Les resultats ont mis en lumiere l’importance, pour la recherche en sante, de donner la parole a des patients partenaires dans le cadre d’une etroite collaboration avec des cliniciens et des chercheurs, pour que les pratiques cliniques soient mieux adaptees aux besoins reels des patients et de leurs proches.

Partnership between patients, nurse leaders and researchers: Outcomes of a web-based KT strategy for hospital discharge planning and care transitions in oncology

A research project brought together patient partners, nurse leaders from six clinical settings in Quebec and researchers to develop and test a web technology, the Forum for Knowledge Exchange (FKE), in order to improve discharge planning practices and oncological care transitions. The project led to the creation of a FKE accessible to the oncology sector of the Francophonie. It revealed an innovative strategy of knowledge transfer (KT) based on the FKE and was fed by collaborative work among partners, where the patient partners played a vital role. The results highlighted the importance, for health research, of giving a voice to patient partners in close collaboration with clinicians and researchers so that clinical practices are better adapted to the actual needs of patients and of their relatives.

Towards a better understanding of the impact of the sequelae of TBI on the social participation of seniors

Background: The multiple sequelae caused by traumatic brain injuries (TBIs) can considerably reduce the ability of seniors to resume their activities of daily living and their leisure activities, and to return to meaningful relationships so they can participate in the life of their community.

Expérience de fréquentation des lieux publics par des personnes âgées ayant subi un TCC en présence d'un accompagnateur-citoyen: projet pilote.

ABSTRACT:This pilot project aims to test and see the relevance of the direct observation method to collect data on the barriers and facilitators to attending public places by seniors with TBI. The study is based on the conceptual framework VADA WHO which focuses on the development of friendly built and technological environments for seniors. Three elderly people participated in the study, recruited from an ongoing project, The Citizen Intervention in Community Living (APIC), in the presence of their personalized attendant. The study shows the feasibility of the method in terms of its acceptability and resources mobilized. It shows its relevance to access additional data that would have been difficult to obtain using others methods (e.g., semi-structured interview), such as the identification of the strategies used by the participants to address the obstacles encountered (avoidance, travel planning, use of physical and preventative support of the personalized attendant).RÉSUMÉ:Ce projet pilote vise à examiner la faisabilité et la pertinence de la méthode d’observation directe pour étudier les barrières et facilitateurs à la fréquentation de lieux publics par des aînés ayant un TCC. L’étude repose sur le cadre conceptuel VADA de l’OMS, lequel mise sur le développement d’environnements bâtis et technologiquement accueillants pour les aînés. Trois personnes âgées, recrutées à même un projet en cours d’accompagnement-citoyen personnalisé à l’intégration communautaire (APIC), se sont prêtées à des séances d’observations en présence de leur accompagnateur. Les résultats montrent la faisabilité de la méthode sur le plan de son acceptabilité et des ressources mobilisées. Elle laisse voir sa pertinence pour l’accès à des données complémentaires qui auraient été difficilement perceptibles à l’aide d’autres méthodes (comme les entrevues semi-structurées), notamment l’identification de stratégies utilisées par les participants pour contrer les obstacles rencontrés (évitement, planification des déplacements, recours au soutien physique et préventif de l’accompagnateur).