Advance Care Planning in Perinatal Settings
Research type
Research Study
Full title
How Should We Implement Advance Care Planning In Perinatal Settings? A Mixed Methods Study Using Normalisation Process Theory.
IRAS ID
280921
Contact name
Karen L Shaw
Contact email
Sponsor organisation
University of Birmingham
Duration of Study in the UK
0 years, 11 months, 11 days
Research summary
NOTE: We are seeking ethical review for a QUALITATIVE CASE STUDY to understand Perinatal Advance Care Planning (P-ACP). It is one part of a wider project that will use :
- Stakeholder engagement and a national staff survey to inform the case-study
- Delphi (consensus building) methods to turn the case-study findings into practice recommendations (see full project proposal for further details - Appendix 1).We are not seeking NHS REC review for these other activities; based on advice from the HRA Queries Line (i.e. not classified as research or recruitment not via NHS). However, we have provided details of all Phases in the next section, for context.
STUDY SUMMARY: P-ACP is a process of formal decision-making to help families plan ahead for their baby’s care when it is recognised that they may have a shortened life or life-threatening condition. This may be during pregnancy or after birth. Although P-ACP is recommended in policy, there is limited evidence about how P-ACP is used in practice or what parents want to gain from it. Approximately 3-5 cases in the West Midlands (i.e. teams, units or organisations) will be purposive selected to allow examination of variables that have been identified (in the previous stakeholder and survey work) to be important in influencing P-ACP. Data collection at each site/case will involve combining findings from (i) semi-structured interviews with purposively selected parents to reflect participant characteristics of interest (n=5 per site), (ii) individual/group interviews with members of their care team (n=7-10) and (iii) documentary evidence e.g. local policies. This will enable key aspects of the initial theory to be further explored and refined. The findings will be used to generate recommendations for service development and research as part of a Delphi study. This is a method of building consensus with an expert panel.
REC name
East Midlands - Nottingham 1 Research Ethics Committee
REC reference
20/EM/0213
Date of REC Opinion
10 Sep 2020
REC opinion
Favourable Opinion