Home care needs of paediatric palliative patients perceived by professionals: A grounded theory

Abstract

Objective: To explore the elements involved in the process of paediatric palliative home care in the Spanish context according to the opinion of professionals.

Method: Qualitative study based on Grounded Theory, adjusted to COREQ standards, using theoretical sampling with in-depth interviews (June 2021-February 2022) with paediatricians, paediatric nurses and social workers from paediatric palliative care units in Spain, excluding professionals with less than 1 years' experience. Interviews were recorded and transcribed literally for coding and categorisation through a constant comparative process of code co-occurrence until data saturation using Atlas-Ti®. The anonymity of the informants has been guaranteed by using pseudonyms after approval by the Research Ethics Committee of the Hospital Universitario de Gran Canaria Doctor Negrín (Las Palmas, Canary Islands) with registration number 2021-403-1.

Results: 18 interviews were conducted and 990 quotes were grouped into 22 categories of analysis and structured into four thematic groups (care, environment, patient and family, and professionals). The findings showed a holistic view emphasising the need to organise and integrate the factors involved in the home-based approach to paediatric palliative home care.

Conclusions: In our context, the home environment meets appropriate conditions for the development of paediatric palliative care. The categories of analysis identified establish a starting point for further deepening the approach from the thematic areas involved: care, the environment, the patient and family, and professionals.

Keywords: Atención domiciliaria de salud; Chronic disease; Continuidad de la atención al paciente; Continuity of patient care; Cuidados paliativos; Enfermedad crónica; Home nursing; Investigación cualitativa; Paediatrics; Palliative care; Pediatría; Qualitative research.