Tutorials for Informal Caregivers in Pediatric Palliative Care
Location Portugal
Organisation(s) Attitude – Social Solidarity Association
Website: https://attitude.org.pt/cuidados-paliativos-pediatricos/tutoriais/
Availablelanguage(s) : Portuguese
Date of development: 2021
Type of tool: Digital
Purpose:
‣ Awareness rising / information
‣ Education
‣ Self-reflection tools
‣ Guidelines (“how to do”)
Topic(s) covered:
‣ activities of daily living (hygiene care in bed, hygiene care, positioning, etc.)
‣ use of devices (tracheostomy, catheter, ventilation, nasogastrictube, etc.)
‣ home adaptations/accessibility
‣ communication of bad news
‣ symptom control
‣ loss and grief management
‣Caregiver’s self-care
Overview
ATTitude – IPSS, made available 19 didactic tutorials, to support informal caregivers of children in pediatric palliative care situations.
Among these tutorials, two topics are particularly relevant for the HMHtopic, namely:
‣ Module 5 – Management of grief and loss
‣ Module 7 – Taking care of the carer
Reasons for selecting the practice and impact
‣ It is an informative/educational tool, simple and didactic, whose playful character, promotes and facilitates the participation and involvement of the family in the provision of health care.
‣ The training of informal caregivers is essential and indispensable, especially in a context of chronic, incurable andprogressive disease.
‣ Usually, the main role of the family/caregiver is to provide support and security, either through affection and understanding, or seeking, above all, to ensure the comfort and well-being of their loved ones, in a context of illness.However, in the face of a situation of severe and progressivedisease, it is necessary to consider the need for (re)adaptationto the disease condition, and consequently to the need that emerges, for a greater and more complex provision of care, often leading the family/caregiver to have to seek to knowhow and what to do.
‣ If themes, such as the anticipation of end-of-life care, palliative care, death, etc. in the adult population, is still ataboo and a paradigm to be consolidated in civil society in general, when it comes to pediatric care in this area, itbecomes even more urgent to invest in the dissemination ofinformation in this area, as well as in the
construction of pedagogical and easily accessible tools.
Impact:
‣ This tool is still relatively recent (2021), so it continues to be
disseminated and is available on the aTTitude platform.
‣ It can be applied in the scope of training. education and qualification, by various intervention groups, whether social, clinical, pedagogical, family and/or institutional.
‣ Target Groups: families, caregivers, children/young people, professionals, volunteers.
Contacts and additional information
Transferability
Although it is spoken in Portuguese, it does not address specificcultural
aspects. It can be a downloadable and/or adaptable tool. Inconvenience: Subtitled only in Portuguese
Contact
Rua Xavier Araújo Loja 6 D Lisbon, Portugal +351 211 398 273
hello@attitude.org.pt