Psychosocial burden in mothers with epilepsy and their caregiver: Feasibility and preliminary results of a digital screening procedure

Epilepsy Behav. 2024 Oct:159:110017. doi: 10.1016/j.yebeh.2024.110017. Epub 2024 Aug 30.

Abstract

Objective: The present study aims to evaluate the feasibility of utilizing a digital procedure to screen for anxiety and depression as well as impairments in psychosocial aspects, such as social support, social activity and quality of life (QoL) in women with epilepsy (WWE) after childbirth. Furthermore, the study intends to digitally screen for burden of the respective caregivers in WWE compared to a healthy control group.

Materials and methods: This comparative cross-sectional study was conducted in the post-partum period on 30 WWE and 33 healthy controls who gave birth between 01/2018 and 05/2021. Additionally, 24 caregivers of WWE and 26 caregivers of healthy mothers took part in this study. Information on psychosocial health and psychosocial burden was collected digitally using the short version of the Social Support Questionnaire, the Social Activity Self-Report Scale and the Hospital Anxiety and Depression Scale. The caregiver burden was digitally assessed with the Zarit Burden Scale in its German adaptation (i.e., Zarit Burden Interview and the Family Burden Questionnaire). Furthermore, QoL was assessed with the QOLIE-31 (Quality of Life in Epilepsy Inventory) in WWE and with the Life Satisfaction Questionnaire in healthy controls.

Results: When comparing WWE and healthy controls, the groups were comparable on psychosocial aspects, such as self-reported social support, anxiety, depression and social activity, when assessed with self-report measures in a digital screening procedure. Although not significantly different between groups, anxiety, depression, self-reported social support and social activity were correlated with overall QoL in both, WWE and healthy controls. Caregivers of WWE and healthy controls were neither significantly different in their objective burden nor in their subjective burden as reported in digitally applied self-report measures.

Conclusion: Although not significantly different between groups, given the correlation between psychosocial aspects and QoL, it is worthwhile to include these aspects in standard clinical screening extending beyond the screening of anxiety and depression in WWE. Overall, the preliminary psychosocial data presented in this study suggest that a digital assessment of psychosocial burden seems reasonable in WWE and warrants integration into further research and clinical practice. Nevertheless, since no significant differences concerning psychosocial aspects were found in the present study, one may argue that highly specialized clinical care, as provided in the present study, may counteract potential psychosocial impairment experienced by WWE who do not receive such specialized care. Hence, further investigations outside of specialized outpatient clinics as well as prospective investigations of subjective factors that may dynamically change during pregnancy ought to be addressed in clinical practice and research for improving care during and after pregnancy in WWE.

Keywords: Digital screening; Epilepsy; Pregnancy; Quality of life; Social support; Women with epilepsy.

MeSH terms

  • Adult
  • Anxiety* / diagnosis
  • Anxiety* / etiology
  • Anxiety* / psychology
  • Caregivers* / psychology
  • Cross-Sectional Studies
  • Depression* / diagnosis
  • Depression* / psychology
  • Epilepsy* / diagnosis
  • Epilepsy* / psychology
  • Feasibility Studies*
  • Female
  • Humans
  • Middle Aged
  • Mothers* / psychology
  • Quality of Life* / psychology
  • Social Support
  • Surveys and Questionnaires
  • Young Adult