• Steve Marshall, Rachel Fearnley, Katherine Bristowe, and Richard Harding.
• Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, London, UK.
• Palliat Med. 2022 Sep 1; 36 (8): 126312721263-1272.

BackgroundHealthcare professionals report challenges in supporting dying patients who have dependent children. These parents are often uncertain how to meet the needs of their children and require appropriate support from professionals. There is limited evidence based guidance for professionals around this issue, which is informed by the views and experiences of children themselves.AimTo develop an understanding of the perspective of children on living with parental life-limiting illness and inform recommendations for healthcare professionals.DesignQualitative semi-structured interviews were conducted, with thematic analysis of the data.Setting/ParticipantsA diverse sample of 32 children aged 6-17, whose parent was living with life-limiting illness, were recruited from across the United Kingdom.ResultsDespite the challenges of living with a parent with a life-limiting illness, the children display agency in their response. The children: feel a responsibility to look after their family; negotiate a relationship with healthcare; employ strategies to maintain some normality; and ensure that the inevitable sadness does not become overwhelming.ConclusionsFive recommendations for healthcare professionals were developed from the findings. Clinicians should encourage dying parents to: (1) acknowledge the agency of children; (2) recognise children's caregiving roles; (3) engender children's trust in healthcare; (4) maintain some normality; and (5) discuss emotions with their children. Implementing these recommendations will assist parents with a life-limiting illness to provide evidence-based support to their dependent children.

17 keywords...

hide…