"The Key Is to Value Every Little Achievement": A Qualitative Study of the Psychological Experience of Parent Caregivers in Paediatric Palliative Care

Abstract

In Europe, Portugal has been identified as the country with the most rapid evolution of paediatric palliative care provision, which is a highly complex experience for families. The present descriptive-exploratory study seeks to contribute to the understanding of the psychological experience of life-limiting conditions in parent caregivers. A total of 14 families completed a sociodemographic and clinical data sheet and answered a structured online interview based on an incomplete narrative resulting from the Unwanted Guest Metaphor. A thematic analysis of the various narratives was performed through an inductive-deductive process. The results provide a holistic view of 10 essential dimensions in the parental psychological experience and contribute to the design of intervention methodologies in an eco-systemic approach. The importance of clear communication with health professionals, an awareness of the unpredictability of the disease, the desire for more self-care, the difficulty in understanding their children's needs and the threat implicit in everyday life are some of the main findings. This research emphasizes the importance of having opportunities of emotional expression and psychoeducation about anxiety' management, enhancing the perception of positive characteristics in children with palliative needs and creating time for the couple. The study has some limitations, such as the small sample size, and suggests that further research should explore the father's experience.

Keywords: chronic illness; experience; family; health psychology; qualitative methods.

Figure 1

Summary of the results based on the main categories and subcategories.