@dystoniauk.bsky.social @cdauke.bsky.social @cerebralpalsyscot.bsky.social @rdrukhub.bsky.social @geneticallianceuk.bsky.social #dystonia #CerebralPalsy

And if anyone would like to read my thesis (Developing an implementation plan with theoretically-informed strategies for integration of the Children's Palliative care Outcome Scale into routine paediatric palliative care), it can be found here: kclpure.kcl.ac.uk/portal/en/st...

4. Identify and prepare champions/implementation leads
5. Facilitate relay of clinical data to providers
6. Prepare patients and family members to be active participants, and obtain patient and family feedback

Read the full paper: journals.sagepub.com/doi/10.1177/...
@kingsnmpc.bsky.social
8/8 🧵

1. Develop a formalised implementation blueprint and mandate change
2. Change record systems and documentation
3. Develop effective education materials, conduct educational meetings and distribute educational materials (eg: youtu.be/0UMJdSAzz9U?... & youtu.be/wNeOWqFkz-Q?...) (7/8)

From this work, and the previous findings of my systematic review (doi.org/10.1186/s129...) and qualitative interview study (doi.org/10.1177/0269...), key strategies were refined and comprehensively specified, forming a implementation plan: (6/8)

Themes include: education & information needs, the importance of a tailored approach, stakeholder engagement & the role of champions, IT system support requirements, improved outcomes & experience of care & evidence for service provision, development, evaluation & expansion (5/8)

This was followed by a second phase of analysis using a Framework approach, underpinned by Normalisation Process Theory to enable identification of potential causal mechanisms underpinning implementation and normalisation of person-centred outcome measures into routine care (4/8)

The Theory of Change map developed explains the causal pathway for successful implementation of outcome measurement in #pedpc. We then consulted with a Young Person’s Advisory Group #PPI and study steering group to inform development of initial implementation strategies (3/8)

We conducted participatory workshops with health and social care professionals, parent/carers of children with life-limiting and life-threatening conditions, and bereaved parent/carers, analysed using a directed content analysis to develop a Theory of Change (2/8)