Caring for the Carers within a Minimum Data Set for Paediatric Palliative Care.
J. Streuli1, K. Widger2, D. Lysecki3, A. Rapoport2 (1Zürich ; 2Toronto CA; 3Hamilton CA)
There is an unquestioned need to improve quality of care for children with serious, complex, and potentially life-threatening conditions including a standardization of outcome measures to facilitate research in this area (Contro, 2004).The question of the right care at the right time, however, does not only embrace the child and its family but also all health care professionals and other "carers" involved. To describe, evaluate and support the right care at the right time, a standardized, validated minimum data sete (MDS) is an important next step.
We aim to develop and complete the initial validation of a Canadian MDS in paediatric palliative care (PPC). The PPC-MDS is meant to be a standard tool to ensure simple collection of uniform and accurate health data, with which we will: (1) identify key elements and indicators for developing and facilitating the use of evidence-based services in PPC, (2) facilitate the adoption of underlying palliative care principles, (3) produce knowledge about the implementation processes including barriers and facilitators, and (4) foster continuous development, testing and refinement of PPC interventions and implementation processes. The study will be conducted in three phases.
In Phase 1 we developed components of the PPC-MDS based on completion of a scoping review of published and grey literature. In Phase 2, the PPC-MDS was refined through interviews with key informants with expertise in PPC. In Phase 3, we will conduct a Delphi study with (inter-)national experts to achieve consensus on the components of the PPC-MDS and establish content validity.
Following Phase 1 and Phase 2, we identified 21 categories and topics for a potential MDS in pediatric palliative care. A subset of six categories of data were endorsed for inclusion in the PPC-MDS regarding aspects of caring for carers: (1) accessibility and knowledge of supporting services, (2) attitudes and preferences, (3) communication and decision-making, (4) inter-professional cooperation, (5) referral to and initiation of palliative care, (6) training and education. Currently we are validating our PPC-MDS regarding its implementation in clinical practice with a Delphi-Study.
Based on our preliminary results, data regarding “caring for carers” is inherently interwoven with patient-related outcome. We present particular categories and discuss their relevance and implementation in a PPC-MDS. Results from the Delphi-study are expected until end of July and will be included in our poster/presentation.