Background The government is committed to increasing access to palliative care that meets best-practice guidelines advocating patient-centred and holistic support (Our commitment to you for end of life care. The government response to the review of choice in end of life care. Department of Health, 2016; Siouta, van Beek, Preston, Hasselaar et al., 2016). The Preparation Star was developed in response to this commitment, and to calls within the palliative care sector for a tool to empower patients to talk with professionals, family or support workers about what is important for them and make plans when approaching end of life.
Aims The development of the Preparation Star addressed the need for a collaborative tool as identified above, particularly in relation to psychosocial support needs. Specific aims were to determine the outcome areas and the Journey of Change describing movement in each area, and to conduct initial validation work on the pilot version.
Methods A literature review informed the first focus group, which included professionals from two hospices and two organisations managing care homes. Scales were drafted and discussed at a second focus group and refinements made before piloting in the organisations. Patient feedback and pilot data was discussed at two final focus groups before further refinements.
Results The Preparation Star identified patients’ needs, with 91% reporting significant issues in at least one area. All patients reported that completing the Preparation Star was positive and 88% felt it provided a helpful picture of their situation. It was completed most successfully in hospice outpatient facilities with those not immediately facing end of life. Internal consistency was good (α=0.79) and there was no item redundancy.
Conclusions Initial findings suggest that the Preparation Star has good psychometric properties and is perceived as acceptable and useful. It may be best suited for use earlier in the end of life pathway. Further research is planned to conduct a full validation of the psychometric properties of this Star including factor analysis and responsiveness.
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