Families' priorities in life-limiting illness: improving quality with online empowerment

Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.

MyQuality is an online tool that enables families to choose and monitor parameters they identify as having an impact on their QOL, which aims to improve patient-professional communications and also to enhance patient empowerment within healthcare dialogues.

A longitudinal, multisite mixed-method evaluation of MyQuality. Families were invited to use MyQuality and completed semi-structured interviews and a Family Empowerment Scale (FES) at T=0 and T+3 months.

Thirty-two families of children with LLIs, attending three children's hospices in one UK region.

Website access, usage patterns and parameter choice, FES scores and qualitative evaluation of interviews.

23/32 families chose to use the website. Mean duration of use was 106 days (range 2-301), with families choosing two or three parameters (range 1-15), most commonly seizures (24/32), constipation (9/32), pain (6/32) and sleep problems (6/32). Mean FES scores increased over time (3.45-3.85). Interview feedback confirmed the acceptability and ease of use of the website, and the value of a graphic record of change over time to support ongoing management and collaborative review of medical, nursing or social interventions.

The identification and monitoring of patient-generated priorities via the MyQuality website empowers families and supports collaboration between parents and professionals to ensure that palliative care is truly patient and family centred.