Communication in Palliative Home Care, Grief and Bereavement - A mother’s experiences

Abstract: In this study a mother’s experiences of communication between her adult son dying in leiomyosarcoma and herself (the author), between his family and a palliative home care team and communication in the support of the mother in her parental grief and bereavement are described and analyzed. The mother’s experiences are captured in personal accounts, writings, during the year of her son’s illness with cancer and his palliative home care and during three years of grief and bereavement after her loss. The data analysis is carried out in four steps by the mother as a researcher: 1) Identification of events of experiences of communication and significant concepts in the writings 2) Construction of four narratives, illustrating the concepts and including excerpts from the writings 3) Interpretation, contextualization and validation of the narratives 4) Contextualization in broader contexts. The son’s hope and disavowal and the mother’s fear and despair emerged as important concepts in understanding the communication between them during his palliative home care. Recognition, acknowledgment and respect from the palliative home care team supported the mother. A network of supportive arrangements was made available to the son and his family. The team recognized the son’s and the family members’ emotional needs as well as the family members’ needs to do anything they could for their husband, father, brother and son. Trust was a key concept in the communication between the son and his family on one hand and the palliative home care team on the other. Trust seems to be a base for the empowerment of the family members. Main factors besides the team’s medical professionalism influencing trust were flexibility, accessibility and continuity. Information, control, friendship and shared experiences were important factors in supporting the mother in her first year of bereavement. The findings point to the necessity of customizing bereavement support, specifically for high risk mourners. In the short term perspective the mother found support in her pre school aged granddaughter, who had lost her father. These contacts provided breaks in the grief, actualized positive memories, established and sustained rituals. In the long term perspective confirmed family bonds helped the mother in her reconciliation process. Empathy, based on the welfare system, providing flexible structures in which the mother was recognized and acknowledged, felt trust, was looked upon as an individual, was empowered and finally was reached by support after her loss, was of substantial importance to her. Empathy based on compassion, shared experiences, shared loss and strengthened family bonds supported her. Empathy to self allowed her to make use of the support she received and was part of her reconciliation process.