Cuidados paliativos oncológicos em um serviço de atendimento domiciliar: enfoque sobre as repercussões ocupacionais vivenciadas pelos pacientes

Abstract

Access to disease-modifying treatment for a serious illness is a right of individuals diagnosed with oncological diseases. However, considering the life-threatening nature of this form of care, oncological palliative care should be linked. The situation of a person being affected by cancer, combined with the prognosis that leads to inclusion in palliative care, provides insights into how changes in people's occupations may occur due to physical and mental limitations. Disruptions in daily occupations as a result of experiencing cancer and its treatment can occur, altering how individuals engage in self-care, work, social, and leisure activities. Consequently, a reduction in the well-being of individuals with advanced oncological diseases can occur due to potential incapacities to perform desired and essential daily occupations. This study aims to describe the main occupational repercussions experienced by individuals in oncological palliative care. It is a qualitative exploratory and cross-sectional study, a multiple-case study approach, conducted with individuals of both genders aged 18 or older, affected by any type of neoplasm, and receiving palliative care from a home care service of a reference hospital in the city of Belém/Pará. An individual interview was conducted at the participants' homes, with a sequential administration of questionnaires. Information from the instruments was systematically organized descriptively, and interview data were analyzed according to the principles of content analysis. The results presented 6 clinical cases, where physical symptoms, emotional symptoms, environmental barriers, fragility in social support, and lack of future perspectives/hope are perceived by participants as factors that directly impact occupations, along with a multitude of symptoms present in the daily lives of each participant. It was observed that most participants attributed a sense of positive changes to some occupational repercussions experienced due to illness. Five analytical categories were identified from the interview data: "Self-perception of occupation's absence", "Occupational repercussions as a consequence of illness and/or treatment", "Influencing factors in satisfaction with performing occupations", "Conceptions about occupational repercussions due to illness and/or treatment", and "Perceptions of received multiprofessional assistance". Participants' experience of occupational imbalance was observed, with routines centered on the adapted performance of basic activities. The presence of multiple physical and emotional symptoms highlights the fragility of the guiding principle of palliative care in promoting symptom relief, as participants generally reported the presence of dozens of symptoms negatively influencing occupational performance. The expansion of investments in research focused on the occupational repercussions of palliative care patients is recommended, aiming to provide evidence that assists in perceiving similarities across different regions of the country and within various healthcare facilities within the health care network.