The needs of parents during end-of-life care for terminally ill child

The needs of parents during end-of-life care for terminally ill child

Polakova K; Loucka M

Palliative Medicine

2018

terminal care; human; child; female; male; clinical article; death; palliative therapy; conference abstract; human tissue; identity; interview; data analysis; mother; risk factor; leukemia; terminally ill patient; solid malignant neoplasm; genetic transcription; grounded theory; qualitative research; genetic disorder; father; immune deficiency

Research aim: The main aim was to describe the needs of parents caring for a terminally ill child during the course of the illness, the time of dying, and after the death of the child. Secondary aim was to identify the risk factors occurring during care provision. Study population: The study sample consisted of 9 parents of 8 children; seven mothers and two fathers. All participants lost their child due to a serious illness (solid tumour, leukaemia, genetic conditions, immunodeficiency syndrome, neurodegenerative condition). The child's age at their death varied from 2 months to 14 years. 6 children died in hospital, 2 at home. Study design: This was a qualitative study. The data collection was conducted by in-depth interviews with bereaved parents. Inclusion criteria was a death of a child due to a serious illness. Participants were recruited among bereaved parents via organisation for bereaved parents, by the snow ball method and self-selection method. Data analysis: Collected data were analysed by grounded theory techniques. All interviews were transcribed verbatim and analysed by open coding and axial coding. Results: Two categories based on key findings were identified: The preservation of one's identity of parent and the influence of the surroundings. The need to be with the child and the need to take care of the child were identified as the main needs of the bereaved parents. The influence of the surroundings is characterised by the support provided by the health professionals taking care of the child and the family. Issues identified by the parents included, among others, the issue of doctor-parent communication, the lack of psychological support, and the importance of support provided to parents after the child's death. The results of the study indicate the need for a complex approach to the family and the need of paediatric palliative care.

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August 2018 List