"The Key Is to Value Every Little Achievement": A Qualitative Study of the Psychological Experience of Parent Caregivers in Paediatric Palliative Care

Title

"The Key Is to Value Every Little Achievement": A Qualitative Study of the Psychological Experience of Parent Caregivers in Paediatric Palliative Care

Creator

Nogueira AJ; Ribeiro MT

Publisher

Clinics and Practice

Date

2023

Subject

Palliative Care; family; qualitative methods; chronic illness; experience; health psychology

Description

In Europe, Portugal has been identified as the country with the most rapid evolution of paediatric palliative care provision, which is a highly complex experience for families. The present descriptive-exploratory study seeks to contribute to the understanding of the psychological experience of life-limiting conditions in parent caregivers. A total of 14 families completed a sociodemographic and clinical data sheet and answered a structured online interview based on an incomplete narrative resulting from the Unwanted Guest Metaphor. A thematic analysis of the various narratives was performed through an inductive-deductive process. The results provide a holistic view of 10 essential dimensions in the parental psychological experience and contribute to the design of intervention methodologies in an eco-systemic approach. The importance of clear communication with health professionals, an awareness of the unpredictability of the disease, the desire for more self-care, the difficulty in understanding their children's needs and the threat implicit in everyday life are some of the main findings. This research emphasizes the importance of having opportunities of emotional expression and psychoeducation about anxiety' management, enhancing the perception of positive characteristics in children with palliative needs and creating time for the couple. The study has some limitations, such as the small sample size, and suggests that further research should explore the father's experience.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

September List 2023

Collection

Citation

Nogueira AJ; Ribeiro MT, “"The Key Is to Value Every Little Achievement": A Qualitative Study of the Psychological Experience of Parent Caregivers in Paediatric Palliative Care,” Pediatric Palliative Care Library, accessed March 3, 2024, https://pedpalascnetlibrary.omeka.net/items/show/19302.