Children with palliative care needs in Papua New Guinea, and perspectives from their parents and health care workers: a qualitative study

Children with palliative care needs in Papua New Guinea, and perspectives from their parents and health care workers: a qualitative study

Watch V; Anga G; Kilalang C; Pulsan F; Vince JD; Duke T

BMC Palliative Care

2023

Child; child; Palliative Care; adult; article; controlled study; female; human; male; preschool child; palliative therapy; clinical article; interview; parent; Only Child; school child; health care personnel; qualitative research; descriptive research; child health care; health care quality; pediatric ward; adolescent; infant; thematic analysis; medical record; knowledge gap; health care need; Papua New Guinea; acute lymphoblastic leukemia/di [Diagnosis]; bronchiectasis/di [Diagnosis]; cerebral palsy/di [Diagnosis]; congenital heart disease/di [Diagnosis]; congenital malformation/di [Diagnosis]; dyspnea/co [Complication]; germ cell tumor/di [Diagnosis]; Guillain Barre syndrome/di [Diagnosis]; hemosiderosis/di [Diagnosis]; Human immunodeficiency virus infection/di [Diagnosis]; job experience; malignant neoplasm/di [Diagnosis]; Melanesia; neuroblastoma/di [Diagnosis]; Pacific islands; pain/co [Complication]; pulmonary hypertension/di [Diagnosis]; retinoblastoma/di [Diagnosis]; thalassemia/di [Diagnosis]; tuberculosis/di [Diagnosis]

Introduction: The World Health Organisation defines paediatric palliative care (PPC) as caring for the child's body, mind, and spirit, and giving support to the family. In life-limiting conditions it is important that palliative support can be provided even when curative attempts are being utilised. In Papua New Guinea, as in other low- and middle-income countries there is a lack of services and training on PPC. This study aims to describe the characteristics of children with palliative care needs and to assess the perspectives of their parents and health care workers. Methods: A descriptive qualitative study was carried out over 5 months in 2022 at the Port Moresby General Hospital children's wards. Clinical information was gathered from the admission charts of children with life threatening and life limiting conditions and a recorded interview was carried out with the children's parents. A focus group interview with 10 experienced nurses caring for these children was video recorded. The recorded interviews were subjected to thematic analysis. Results: Twenty children and their parents were included in this study. Nine had a cancer diagnosis and 11 had a chronic progressive condition. The common clinical characteristics of children with palliative care needs were pain (n = 9) and shortness of breath (n = 9), and most children had more than one symptom. Several themes were identified in the parent interviews. Most parents could not name their child's diagnosis, but they were able to correctly describe their child's condition using their own terms. Most parents felt involved in their child's management and were satisfied with the care provided. Parents were psychologically affected by their child's situation but were hopeful that God and the medicines would heal their child. Ten nurses were involved in a focus-group interview. Most nurses' understanding of palliative care was from experience not from formal training, but most felt confident in identifying the physical, emotional, and spiritual needs of the children. Understanding of analgesia was limited, as was the availability of appropriate medications included in the WHO Analgesic Ladder. Conclusion: There is a need for a systematic approach to palliative care in Papua New Guinea. Palliative care can be integrated into an overall approach to quality of paediatric care. It is relevant to a broad section of children with severe chronic or malignant conditions and can be carried out with limited resources. It does require some resources, further training and education, and increased provision of basic drugs for symptom control.

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2023 SE5 - Low Resource Setting