Children's complex health: Maternal experiences of care and decision making.

An increasing number of children with complex life-limiting and life-threatening conditions are being cared for at home by their parents. Negative impacts on maternal health are now being recognised. This study sought to voice parental experiences to determine what matters most; explore day-to-day decision making and Advance Care Planning; and to inform local service development. Seven mothers from one community nursing service were interviewed using a semi-structured qualitative approach during the Coronavirus disease 2019 pandemic. Seven data-driven themes were identified following six phase thematic analysis: cherishing normality; navigating the system; being proactive; meaningful connections; beginner to expert - and back; they're not any child - they're my child; and Coronavirus disease 2019 pandemic. Practice implications include early discussion of what matters most and benefits of written plans to ensure fair access to treatment for children with complex health. Mothers highlighted that sharing their story enhanced their sense of coping and purpose. Increased support at times of vulnerability and permission to explore decisions were highly valued.

Symptom care flowcharts: a case study.

Parents who have a child with a life-limiting condition face the painful prospect of seeing their child's health deteriorate and of becoming involved on a practical level with increasingly complex care. An example of a child with a rare genetic disorder requiring palliative care is used to illustrate how one aspect of the support needs of parents can be met through the use of therapeutic flow charts. The case study shows how a symptom management flowchart was developed to help one family feel more confident in caring for their dying child. It enabled them to focus less on the illness and more on spending quality time as a family. The development of symptom care flowcharts enabled the professional team and parents to think through problems before they arose and to make joint decisions. They boosted the confidence of family and carers by providing them with clear information and advice. Flowcharts of this kind can help support parents and carers in ongoing situations where multiple carers are involved and the child's care needs change over time.