Modified Delphi for Genomic Bereavement Care
Condition: Fetal Anomaly; Bereavement; Genetic Disease
MeSH terms: Genetic Diseases, Inborn; Congenital Abnormalities
Study type: Observational

Summary: 
      It is estimated that 1 in 4 pregnancies end in loss, be these early miscarriages, ectopic
      pregnancies, or later intrauterine losses for any reason. Genomics is a major part of
      pregnancy loss, and clinicians want to offer the best and most appropriate test available to
      women and their families, whilst ensuring that there is equity in the access to this testing,
      so that no family goes through a loss without the right support and information. Whilst there
      is limited information to inform professionals as to how to incorporate genomics into
      bereavement care there is a need to identify current expert consensus as to how this should
      be performed, in order to make recommendations for best practice.
    

Detailed description: 
      There is a lack of guidance available as to how to care for women and families who suffer a
      pregnancy loss where fetal anomalies have been found and a genetic cause is suspected. As it
      is estimated that 1 in 4 pregnancies end in loss, these families make up a significant
      proportion of the population that maternity services care for and with no consensus in this
      area many families may have a poor experience.

      As the field of genomics rapidly advances, it is important that patient care reflects the
      changes in practice and that the most appropriate tests and support are offered. All aspects
      of patient care will be reviewed including diagnosis, delivery, laboratory investigations,
      postnatal care and follow up in future pregnancies. The role of the genomics midwife will be
      explored and the role of the bereavement midwife will be further defined when it comes to
      support following pregnancy loss where there is likely an underlying genomic cause.

      The aim of this modified delphi study is to understand what the current expert consensus is
      for genomic bereavement care. Using this, best practice guidance will be written that can be
      used within the NHS to better support families who suffer pregnancy loss during this
      pregnancy and in the future.
    

Intervention name(s): Questionnaire
Intervention type(s): Other
Intervention description(s): Participants will be asked to complete a series of 3 questionnaires that will be used to gain insight into the current expert consensus for Genomic Bereavement care for Pregnancy Loss.
The 2nd and 3rd Questionnaire will be modified from the first to try to generate consensus, depending on the answers from the previous round.
Observational model: Cohort
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        Potential participants will be contacted via email with an advert for the study in order to
        declare an expression of interest. Relevant groups will include; BMFMS members, Fetal
        Genomics Group steering group for those with prenatal interests, BRIPPA members for
        pathologists with an interest in perinatal pathology, Laboratory leads for each GMSA, a
        bereavement midwife from each GMSA.