Being an Informal Caregiver in Palliative Care


  • Maria da Graça Duarte ACES BAIXO TÂMEGA
  • Telma Alves Assistente Social na Câmara Municipal de Sintra e mestranda em Políticas de Desenvolvimento de Recursos Humanos no Instituto Superior de Ciências Sociais e Políticas – Universidade de Lisboa
  • Carla Ribeirinho Universidade de Lisboa, Instituto Superior de Ciências Sociais e Políticas, Centro de Administração e Políticas Públicas, Rua Almerindo Lessa, 1300- 663, Lisboa, Portugal
  • Sónia Alves Instituto Superior de Ciências Sociais e Políticas - Universidade de Lisboa



Palliative care, to care, informal caregivers


This study aimed to understand the perceptions (difficulties, needs, positive and negative repercussions, strategies used and significant moments) of informal caregivers of people undergoing palliative and end-of-life care. An online questionnaire survey was administered, obtaining 70 responses. The data collected were subject to quantitative and qualitative analysis. Data revealed that the majority of respondents are Portuguese, female, with an average age equal to or greater than 54 years, with high education and educational qualifications, having become caregivers in the face of a family member's severe illness or dependence. The results show that caring has common conditions but reveals a unique process influenced by multiple variables, including perceived support. In the case of end-of-life care, they represent a greater burden on caregivers, although care is a dynamic process in which facilitating, protective and other hindering factors interact, adaptive strategies, depending on individual resources, whether of the person being cared for, or of the caregiver, as well as other determinants of health and social support, as well as the sense of purpose, selflessness and usefulness experienced by the caregiver.