Autoavaliação da qualidade de vida familiar em cuidados paliativos pediátricos: um estudo exploratório

This article, of exploratory and mixed nature, sought to comprehend the impact (physical, psychological, social and environmental) of parenting a child in need of pediatric palliative care on the self-assessment of their quality of life. The sample is composed of 18 mothers and fathers, who completed the WHOQOL-Bref questionnaire, available online, from which five were interviewed individually. The integration of qualitative and quantitative results shows that all dimensions of quality of life are mainly affected in a negative way. At the physical level, there is a decrease in the relaxation time, frequent fatigue and stress in carrying out activities. In the psychological dimension, the satisfaction before the achievements of their children is explored, which contrasts with the constant suffering and blaming for the lack of attention dedicated to siblings. The most recurring concerns are related to the provision of care and anticipation of the future. In terms of social relations, there is a deprivation of leisure opportunities and contact with others. The discomfort against stereotypes and judgments of society is explored, emphasizing an urgent need for change of thinking. As for the environmental dimension, the quality of health services is perceived as insufficient and expensive. Implications for the psychological monitoring of caregiver parents are withdrawn, aiming at their own needs, feelings, concerns and expectations. Future studies are recommended using a larger sample, which includes other elements of the family system, and a detailed exploration of the various phenomena with impact on quality of life.