“Sabemos que não vai ter cura, mas temos que aproveitar o momento”: vivências das famílias diante da terminalidade de familiar em cuidados paliativos

Abstract

Palliative Care (PC) is a multidisciplinary care aimed at people with lifethreatening illnesses and their families, indicated from the diagnosis of the disease, and should be intensified in the terminal phase and continued until the period of mourning for the family members. In the terminal period (last six months of life) until death, families experience changes in their daily lives and in their dynamics, the terminality of a family member may require important psychosocial adaptations. The main objective of this research was to understand the experiences of the family in the face of the terminal illness of a family member who was in PC. Five families who had one of their members followed by the PC, in a terminal condition, were interviewed in the period between October 2022 and February 2023. The interviews were recorded in audio with the consent of the participants and signature of the Free and Informed Consent Form (FICF), were fully transcribed and analyzed according to the Thematic Analysis (TA). Three thematic categories were analyzed: Understandings of terminality, Feelings and Caring Experiences, that were divided into the seven thematic subcategories: Team Communications (or Clarifying Conversations); Previous experiences with death and perception of the current status of the family member; Multiplicity of feelings related to terminality; Feelings directed at the sick family member; Feelings related to the Transcendental/Spirituality; Attitude towards future absence and Attitude of valuing life. Systemic Family Theory was the theoretical approach used to understand the experiences of families, according to the characteristics and functioning mode of each family. Among the care experiences narrated by the families, palliative care experiences, such as giving affection, being physically present, providing physical, emotional and spiritual comfort were highlighted. It was intended, with this research, to contribute to the academic production on PC by adding to research the focus on the experiences of families in the face of terminality. It can promote discussion about the importance of PC assistance to families, enabling their experiences in the face of a terminally ill family member to be better understood and supported.