Parents’ Experiences of Feeding and Eating in Children with Conditions Requiring Palliative Care, at the End of Life, in Kuwait : A Grounded Theory

Al-Dabbous, Tala and Brearley, Sarah and Salifu, Yakubu (2026) Parents’ Experiences of Feeding and Eating in Children with Conditions Requiring Palliative Care, at the End of Life, in Kuwait : A Grounded Theory. PhD thesis, Lancaster University.

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Abstract

Background: Feeding and nutrition are central components of care in paediatric palliative care. As life-limiting and life-threatening conditions progress, many children experience a gradual decline in oral or enteral intake, which is often recognised as an indicator of the terminal phase. Existing literature has largely focused on the clinical, physiological, and ethical considerations of artificial nutrition and hydration at the end of life. The emotional, moral, and embodied meanings parents attach to feeding during this stage remain underexplored. Understanding these experiences is important for supporting parents for informing sensitive and responsive clinical practice in paediatric palliative care. Aim: To explore parents’ experiences when caring for their child diagnosed with a life-limiting or life-threatening illness whose ability to eat and feed declines towards the end of life, in Kuwait. Methods: A Constructivist Grounded Theory with parents (n=15) of children with life-limiting or life-threatening conditions receiving palliative care or post bereavement, in Kuwait. Purposive and theoretical sampling were used to recruit parents who had direct caregiving experience with a child whose feeding declined towards the end of life. Data were collected through in-depth semi-structured interviews, which were analysed through initial, focused and theoretical coding, supported by fieldnotes and memoing. Findings: Five categories were identified: Eating and Feeding; Parental Duty and Obligation; Distress; Embodied Experience; and Grief. The dynamic interplay between the categories led to the development of a Preliminary Model of Parent’s Embodied Experiences of Eating and Feeding Towards the End of Their Child’s Life. Reflecting the Constructivist Grounded Theory approach, a delayed literature review provided data on distress and embodied grief, bringing new insights to the empirical data leading to the development of a substantive theory of Parents’ Embodied Experiences of feeding their child at the end of life. Discussion and Conclusion: An embodied experience of grief is experienced by parents both physically and psychosomatically; influenced by cumulative small losses over their course of the illness trajectory. The initial dominant experience is anticipatory grief, accompanied by continuing grief about loss. The balance of these shift over time, until grief becomes the dominant experience at death and post-bereavement. For parents, eating and feeding represent more than a means of providing nutrition; they facilitate comfort, connection and love. The inability to feed their child provokes a sense of a loss of a core parental duty, intensifying emotional pain (heartache), physical pain of emotional suffering (heartbreak), physical and moral distress. The resulting experience of embodied grief is phasal, manifesting in three phases of increasing intensity along the illness trajectory, from diagnosis to post-bereavement. Understanding the evolving nature of grief and the phasal embodied experience of parents will enable clinicians and paediatric palliative care services to offer support for both the physical and psychological manifestations of an embodied experience of grief, and tailor care to parents’ evolving needs across each phase. As such they can respond to the increasing intensity of the physical, psychological and somatic experiences of parental grief, as illness progresses and beyond.