Information capsules on complex care
To equip volunteers working in the Initiative’s partner establishments
One of the Relay project’s objective is to set up a series of information capsules on complex care for pediatric volunteers working in partner facilities, so that they can intervene on an ad hoc basis with families who have a child with complex needs, when the child has to go to hospital. Complementing the training already available in the volunteer services departments within the facilities, these capsules will be additional tools designed to give volunteers a better understanding of the reality of families whose children have neuro-musculoskeletal disorders and require complex care.
The volunteer managers at the partner establishments all agree that: “Volunteers have the will and desire to support families whose children require complex care, but they don’t always know how to approach them. The well-being of patients and their families is important to them, so it was important for the committee to think about appropriate materials and offer them the right tools”. Indeed, adding information video capsules that more specifically address questions about complex care and the daily lives of families to their basic training will broaden volunteers’ knowledge.
A better understanding of family realities
Children with chronic conditions require complex care, so they are accompanied by multidisciplinary teams throughout their lives, and have a huge number of appointments with a wide variety of medical specialties. As a result, families spend a great deal of time in waiting rooms, whether for medical follow-up, to obtain results or to discuss treatments. So how can we help parents who are often overwhelmed? What do these families need? How can we interact with children and provide a reassuring presence? These are the questions that the series of information video capsules on complex care aims to answer.
More concretely, the capsules are designed to provide information on the various diagnoses, the child’s possible behaviors and the context in which families live, to provide the means to carry out concrete actions adapted to each situation and circumstance, and to raise awareness of the behaviors and attitudes to adopt depending on the person involved (child, family, professional). Thanks to these video capsules, Volunteers can learn more about topics such as the most frequent cases of complex care, the different types of activities possible for positive interaction with patients, and the question of bereavement.
Two videos have already been produced with the help of the AceMedia creative studio and are available on the MUSCO website, in the Resources section. Kaitlen Gattuso, Child Like Specialist, and Lise Gagnon, Head of Care and Services, Psychoeducation, Specialized Education, both at CHU Sainte-Justine, as well as Stephanie Gould and Camille Brosseau, Interinstitutional Trajectory Coordinators (CTI) at MUSCO, took part in the initial filming to explain the different ways of approaching and connecting with patients and their families in complete confidence, and to present the difficulties of the care trajectory for children requiring complex care.
These capusles were shown at the first two editions of the MUSCO Conference for pediatric volunteers, and participants were able to benefit from an activity to anchor the information they had received. Overall, the capsules were very well received.
A more recent shoot began at the AceMedia studios, this time with several families sharing their experiences. Carole, Chantal and her son Laurent, Laetitia and her son Raphaël took part in the game, answering questions and taking part in the decorative fresco in the background. The filming was extremely moving, and enabled the participants to talk as much about the difficulties they may encounter in their daily lives and family dynamics, as about the support they receive in the facilities and the interactions – experienced or desired – with the volunteers.
Once finalized, this video will enable volunteers to better understand the challenges faced by patients and their families. Other videos will be filmed in 2025, and all these resources will be integrated into the ongoing training curriculum for volunteers in the various facilities, along with activities developed by the Relay committee for the occasion.
The information video capsules are a way of addressing the needs of families and offering volunteers the opportunity to learn more about the reality of patients requiring complex care. Every situation is different, and not all families have the same experience, but having concrete tools that address the issue of complex care and that volunteers can consult at any time is certainly a step in the direction of better mutual understanding.