'in the shadow of the disease': The perspective of parental caregivers of children in palliative care

In Portugal, there is an estimate of more than 6000 families who need pediatric palliative care (PPC), but it's the country in Western Europe with the least evolution in providing it. The parental caregivers have been the focus of several studies, due to the impact on their well-being and quality of life. Despite this, most of the literature has been focused on cancer, neglecting other diseases such as neurological, hematological, renal, among others. The present study, of descriptive-exploratory nature, is aimed to contribute to the understanding of the psychological experience of complex chronic disease in parental caregivers. The sample consisted of 14 families of children in PPC, composed by 13 mothers and 1 father, aged between 27 and 48 years, which filled out a socio-demographic and clinical questionnaire and answered a semi-structured online interview based on an incomplete narrative that results from the Unwanted Guest metaphor. The results from thematic analysis evidenced 10 main categories: confrontation with the diagnosis;post-traumatic growth;day-to-day challenges;coping strategies;emotional impact;family impact;future's perspectives;resources and social support;disease's representation;representation of the child with disease. The reduced sample dimension and the influence of Covid-19 pandemic are considered some of the study's limitations. However, this study covered several aspects of the parental caregivers' experience and promoted creative answers through their own perspective. For the psychological intervention, implications are drawn suggesting the identification of resources that promote the activation of key processes in family resilience and reinforce a healthy adaptation. Additionally, the results contribute to the development of specific intervention methodologies for this population in a holistic and eco-systemic approach and suggesting further research exploring father's experience and the hospitalizations' impact.