Lived experiences for potential IAC. Version number 1.0

• Research type

  Research Study

• Full title

  Exploring the lived experiences of family members undergoing clinical screening for potential inherited arrhythmic conditons.

• IRAS ID

  240303

• Contact name

  Geraldine Lee

• Contact email

  gerry.lee@kcl.ac.uk

• Sponsor organisation

  Kings College London

• Duration of Study in the UK

  0 years, 6 months, 6 days

• Research summary

  The question being addressed by this study is; What are the lived experiences of patients undergoing clinical screening for a potential inherited arrhythmic condition, following the sudden cardiac death of a 1st degree relative due to sudden arrhythmic death syndrome (SADS)?

  SADS is an unexpected sudden death where post mortem fails to identify a specific cause. Where SADS is suspected, 1st degree relatives are advised to be clinically screened for a potential inherited arrhythmic condition.
  There is a lack of literature exploring this experience. From the PI’s clinical experience it is clear this is a challenging experience for patients to go through, both the death of a close relative and being screened themselves for a potential inherited arrhythmic condition. Information on this experience will give care teams insight into the psychological support needed whilst going through the clinical screening process and could contribute to providing better support through the experience.

  The study is being performed as part of the PI’s MSc programme at King’s College London and forms the basis of his dissertation module, with a 1 year time frame from research design to submission of dissertation project. It will be performed under the supervision of a senior lecturer from the faculty of Nursing, Midwifery and Palliative Care at King’s College London.

  This study will follow a descriptive phenomenological approach using one semi-structured interview, of up to 60 minutes, per participant, for data collection.
  Eligible participants will have been referred for screening over a year ago following the death of a 1st degree relative. It will be limited to English speaking adults only.

  The PI works as an inherited arrhythmia nurse specialist at St. Bartholomew’s hospital (Barts Health NHS Trust) and participants will be recruited from this site and service only.

• REC name

  London - Stanmore Research Ethics Committee

• REC reference

  18/LO/0375

• Date of REC Opinion

  21 May 2018

• REC opinion

  Further Information Favourable Opinion