The role and perception of the caregiver in a specialized Pediatric Palliative Care Center in medicine preparation and administration: a survey study

BACKGROUND In pediatric palliative care, the primary caregiver is primarily responsible for managing pharmaceutical therapies. Few data are available regarding the influence of this burden on quality of life in terms of time, concerns as well as a considerable risk of administration errors and adverse effects. OBJECTIVES The aim of this survey was to look at how the caregiver prepared and administered pharmacological therapy, including any delivery problems, as well as how the caregiver assessed the treatment. METHODS Between October 2022 and March 2023, a descriptive single-center survey study was carried out in the tertiary care pediatric palliative center of the Padova University Hospital. Participants are all the people who provide care for children in charge of our center who are younger than 23 years old, receiving at least one drug daily and who cannot self-administer their therapy. The questionnaire consisted of 18 multiple-choice and semi-closed questions, grouped into 4 main topics: therapy preparation, therapy administration, administration errors, and therapy assessment. RESULTS A total of 100 survey responses were collected. The most challenging categories have been identified as being therapy preparation and medication dose measurement. 52% of caregivers handle prescriptions at least three times each day, with 32% preparing them for more than 5 minutes. Only 59% of respondents reported enough training. Due to tiredness or the complexity of therapeutic regimens, 14% of respondents reported making a drug mistake in administration in the preceding three months. Nearly one caregiver in three believed their child "always" used too many drugs. 39% of patients had issues or questions about the prescription and wanted to discuss them with medical experts; 79% of patients believed that seeking assistance from a clinical pharmacist about the prescribed medicaments. DISCUSSION Many caregivers of pediatric palliative care patients frequently had trouble planning, preparing and delivering pharmacological therapy to their children. Attempting to simplify medications regimen, choosing formulations that are simple to administer and measure, investing in improved caregiver training, talking about therapies with carers, and involving clinical pharmacists in this process are all potential strategies to improve this condition and reduce their burden.