Relationship Experiences Following Epilepsy Surgery

  • Research type

    Research Study

  • Full title

    Experiences of Romantic Relationships Post Epilepsy Surgery: A Qualitative Exploration

  • IRAS ID

    303669

  • Contact name

    Zoe Poysden

  • Contact email

    zoe.poysden@nhslothian.scot.nhs.uk

  • Sponsor organisation

    University of Edinburgh

  • Duration of Study in the UK

    1 years, 11 months, 2 days

  • Research summary

    Research Summary

    Epilepsy has a detrimental impact on individuals. For some, epilepsy surgery provides seizure relief; however, seizure relief does not always result in improved overall wellbeing. Unmet expectations following surgery may lead to distress, grief can be experienced for lost time and relationships may alter as couples learn to adapt to a new normal. Despite this, research has not explored patient’s experiences of relationship adjustment after surgery. This study hopes to undertake interviews with patients who have undergone epilepsy surgery, to gain an understanding about perceptions of relationships following surgery.

    To take part participants’ must have had epilepsy surgery within two to five years ago and be seizure free. They must have been married or living with a partner prior to surgery.

    Participants will be recruited by sending invitation letters via neurology consultants at Edinburgh and Glasgow Epilepsy Programmes. Participants will also be invited to take part through advertisements with third sector organisations. Interviews will be completed online, and it is assumed these will take approximately 45 to 90 minutes. The interviews will then be transcribed, anonymised and analysed, understanding and drawing out personal meaning about how patients make sense of relationships after surgery.

    The results will be written up and hopefully published. The results will be shown to the participants, hoped to be presented at related conferences and publicised on social media for further accessibility. This research is important because it can add to the limited understanding about relationship adjustment post-surgery. This may pave the way for further research of patients’ partners experiences of relationships following surgery. More practically, the research may guide service design, with further relationship support before and after surgery to improve outcomes and quality of life.

    Summary of Results

    Relationships are important in health, impacting health-related outcomes and even death. Similarly, health conditions impact relationship dynamics. Research has indicated that people with epilepsy struggle with romantic relationships, and epilepsy surgery further compounds relationship adjustment difficulties, but neither has been widely explored. The first study reviewed the evidence base to evaluate and synthesise findings on epilepsy and romantic relationships. The second study explored individuals who have undergone surgery for epilepsy experiences of romantic relationships postoperatively.

    The systematic review found that epilepsy identity impacted socialisation and self-belief, leading to self-protective behaviours, such as withholding a diagnosis, distancing, or increased agreeableness. This meant that romantic relationship difficulties arose, causing distance within relationships. Alternatively, for some, epilepsy brought a stronger relational bond, bringing closeness within relationships. The review emphasised the significance of epilepsy on the person diagnosed, but, importantly, it also highlighted the significance of epilepsy on partners.

    Semi-structured interviews with 10 participants explored experiences of romantic relationships after epilepsy surgery. Fewer seizures brought unexpected changes related to intimacy, mental health, and identity, bringing adjustment for both patients and partners. Those around people with epilepsy (healthcare professionals, colleagues, and friends) play an integral role in adjustment. Romantic relationships were important for facing adjustment together. However, concern for partners and relationship difficulties were identified. Practical recommendations and future research suggestions are provided.

  • REC name

    Wales REC 3

  • REC reference

    21/WA/0352

  • Date of REC Opinion

    12 Jan 2022

  • REC opinion

    Further Information Favourable Opinion