We surveyed parents and caregivers of children and youth who had experienced the illness, dying or death of a family member. We asked them, “how concerned are you?” about a list of common issues. On this page you will find information, ideas and strategies to address the biggest or most common concerns that people identified.
Overall, we found that parents’ and caregivers’ concerns could not be predicted by their own or the child’s gender, the child’s age, the type of illness or death, or how much time had passed since the death had occurred. Instead, each person’s experience and concerns were uniquely shaped by their life experiences and relationships with the children and youth, and with the person who was ill, dying, or who had died. There is no right or wrong way to feel, and no right or wrong amount of concern.
We did, however, notice that some concerns about the child or youth were slightly lower for parents than they were for other caregivers, like aunts, uncles and grandparents. These caregivers were no more concerned about their own caregiving, but were a bit more concerned about the child or youth’s understanding or grief, perhaps because they had not spent quite as much time with the children as their parents had.
No matter what your relationship is to the child who is grieving, or how concerned you are, we hope we can help. We have pulled together some information and ideas from families and our team, as well as some of our own and other agencies’ resources that we hope will be helpful for parents who share any of these concerns.
We interviewed bereaved parents whose 8-14 year old children died because of a brain tumour that made it difficult for them to communicate when they were dying. Interviews explored parents’ perspectives of: the communicative needs and abilities of dying children; creative communication strategies they used; and topics that were most important for families to discuss with their children. Parents’ stories highlighted how important communication was for maintaining relationships and intimate connections during the end of their children’s lives. Although our original goal was to design a tool or an “app” to communicate for the child, parents taught us that the simple strategies they used to communicate without technology were better for maintaining their connections and relationships. Based on that, we developed a handbook to share strategies, insights and advice from these parents, with others in similar situations.
We interviewed siblings between the ages of 8-19 years old, who had a brother or sister who was receiving palliative care. Our longitudinal study involved repeated interviews to help us understand how siblings’ experienced their time and relationships with the child who was ill, as well as with their parents and their peers, and how these experiences changed over time. These siblings’ stories taught us that each of those relationships were both sources of support, comfort and that they were very meaningful. However, at the same time, these relationships were also sources of strain as the ill child’s needs and siblings’ responsibilities increased over time, and their feelings of missing time with their friends and family grew. These siblings’ insights suggest important ways that the adults in their lives can validate and support them as they face these challenges, and help siblings to make the most of the time they enjoy together with loved ones.
We interviewed children between the ages of 7-14 years old and their parents about their experiences of childhood brain tumours, and how they communicated about their personal and shared experiences. Children and parents’ stories reflected grief and uncertainty, as well as strategies they used to maintain a positive outlook and a sense of normalcy, to cope and adapt to the struggles and changes in their lives. Parents and children communicated to express their grief and faith, to cope and to align themselves in relation to the illness. They described some “nice conversations” about very difficult topics, highlighting that even emotional or challenging discussions can have very positive effects for families, in helping them to have a shared understanding, feeling united in their experience, and preparing for what lies ahead.