Article Text
Abstract
Background Assisting young children when a parent faces a life-limiting illness presents significant challenges. Healthcare professionals play a crucial role in engaging them, and yet the impact of such interactions on the professionals themselves and their perceived ability to offer support remains unclear. The impact on home hospice professionals is even less understood, and yet they are more likely to interact with these children during their visits. They recognize the need to communicate with these children and address their needs, despite the delicacy of broaching the topic and potential challenges. Understanding the home hospice professionals’ concerns is essential to enhance their capacity to provide effective support.
Objectives This study aimed to examine the experience of home hospice professionals when supporting the young children of terminally ill patients. We sought to understand the emotional and psychological impact of doing this work, and describe sources of strength and coping strategies.
Methods Semi-structured, in-depth interviews were conducted with 16 home hospice professionals who had supported patients with young children at home: 4 Doctors, 6 Nurses and 6 Psychosocial Support Professionals. The latter group consisted of 3 Medical Social Workers, 2 Art Therapists and 1 Spiritual Care Counsellor. Verbatim transcripts of recorded interviews were analyzed thematically.
Results Three themes emerged. First, the multidisciplinary team was a pillar of support, with members performing distinct roles. Art therapists and Medical Social Workers primarily attended to the children, with doctors and nurses tending more to the patient. Members supported each other, and more experienced colleagues provided supervision/advice. Collaboration with other institutions such as schools was also useful.
Secondly, understanding family dynamics and children’s needs, including knowledge of how children grieve and process information, was important in order to support the child at home. Professionals advocated for the children’s need to know what was occurring with their parent. However, time constraints and limited resources affected their ability to engage children. There was little formal training on communicating with children, with professionals largely drawing on prior experience or doing their own research.
Thirdly, professionals embraced their own vulnerability. They experienced countertransference, and most were intentional about self-care. While there was fear of making things worse for children, there was a sense of fulfillment and comfort in being of assistance.
Discussion Professionals showed awareness of the emotional toll, and vicarious post-traumatic growth was also evident in some. There was significant countertransference, mostly in for those who were themselves parents of young children. Parentified children who were caregivers causes significant distress to the Professionals.
Significance There is a need for better organizational support to manage emotional toll and time constraints. More specialized training and resources are required, as well as enhanced partnerships with external agencies to better support affected children. Findings can contribute to the development of an interdisciplinary project aiming to address these issues.