In some cases, children who are provided with care at the Lighthouse are unable to communicate and have no control over their environment. As for any other child, it is important to identify and recognize their needs, tastes and sensitivities, whether they can express them or not. All of our caregivers and volunteers are therefore trained to attentively care for the children and families of the Lighthouse.
Attentive care requires presence, listening and paying close attention to the abilities and needs of each child. By carefully observing children we can identify any physical sign of discomfort or pleasure, and thus determine what stimulates them.
This approach is even more important because the children of the Lighthouse each have their own needs, interests and capacities. Some may enjoy doing arts and crafts and being close to their caregivers, while others might prefer keeping a certain distance with people in their environment. We must know how to understand when a child wants to be left alone, but also pay attention to see when the child wants come out of isolation. Some children wish to be more independent, while others want more support, which is why caregivers must fully understand each child to adapt their approach accordingly.
We also have put ourselves in the children’s place. How would it feel like to be pushed in a wheelchair? How would I feel if I couldn’t voice my needs? What type of help would I want if I couldn’t hold a paintbrush? What are the caregiver’s intentions? Attentive care is necessary to develop trusting relationships and to give children the opportunity to live a fulfilling life despite their physical, intellectual and affective limitations.
Children in palliative care are accompanied from their first day at Maison André Gratton up until the very end of their life.
Attentive Care for Families
It is also important to be attentive to families, who might feel a certain anxiety when their children stay at Maison André Gratton for the first time. Some have never worked with caregivers and wonder if the nurses will administer their children’s medication properly. Will the caregivers recognize their children’s fear, needs or happiness? Will they rock them to sleep like the children are used to at home? These are all normal concerns for parents, which is why the children are always accompanied by one of their parents the first time they stay at the Lighthouse. Caregivers thus become familiar with the children’s specific needs in terms of care, diet, activities, communication, interaction and bedtime habits. Attentive care is necessary to understand the parents’ needs, concerns and expectations.
At the end of a child’s life, it is even more important to pay attention to the family and siblings’ needs with sensitivity and flexibility, and to find a balance between support and privacy while they mourn their loss. We must follow the pace of every family member and simply walk by their side, to support them in the present moment and if they wish to, help them plan the future.
The Lighthouse’s mission is to contribute to the well-being of terminally ill children and their families. Through attentive care, we strive to give these children the best quality of life up to the end of their life.