Social support & resilience among refractory epilepsy patients preparing for resective surgery

Patti Shih, Jack Giannini, Hannah Bartman, Caitlin Antoon, Alexandra Nielson, Frances Rapport

Research output: Contribution to conferencePosterpeer-review


Epilepsy becomes ‘refractory’ after two or more anti-epileptic drugs fail to control people’s seizures. Refractory epilepsy patients can have a number of psychosocial challenges, such as depression, social isolation, poor quality of life, and stigma. Resective surgery, where the cortex of the brain responsible for generating seizures is surgically resected or disconnected, can be an effective treatment among carefully selected patients. However, anxiety and uncertainty can often be experienced by patients as they consider the prospect of brain surgery and unknown outcomes.3 This study examines how refractory epilepsy patients draw from their social relationships and networks as sources to support them and enhance their resilience, as they make decisions and prepare to undergo a major brain surgery.

This qualitative study took place between January and December 2017 at two tertiary epilepsy centres in NSW, Australia. Data were collected through in-depth interviews with six epilepsy specialist clinicians and 12 refractory epilepsy patients undergoing pre-surgical assessments, and 12 observations of clinical consultations. Interview data were transcribed verbatim and analysed thematically in corroboration with notes from observations, via group-work.

1) Connection and affirmation from other epilepsy patients: Meeting people who can relate to their experience of illness made patients feel they’re not alone. Meeting others who have had positive outcomes from the same or similar surgical procedure can provides hope and optimism.

2) Support from family and friends: Some patients were dependent on the physical care provided by close family members during times of limited seizure control. Others, who were less dependent on family support, nevertheless relied on family to gather and interpret treatment-related information when they felt too confronted or confused, and helped them make difficult treatment decisions. However, some family and friends reinforced stigma and anxiety, if they were unable to relate to the psychosocial challenges of living with epilepsy, or were misinformed about the condition.

3) Motivation from health and social care professionals: Apart from clinical care and provision of treatment-related information, many patients drew emotional support and affirmation from healthcare professionals from the multi-disciplinary clinical professionals who oversaw pre-surgical assessment and care. In many ways, healthcare professionals became “another family”. Social workers and psychologists, if accessed by patients, motivated better self-care practices, including exercise and relaxation and reduced intake of drug and alcohol.

4) Drawing strength from personal experience of illness: Living with epilepsy was a major experiential marker in patients’ lives. Some patients suggested that coping with illness was a source of strength and resilience, and “made me stronger”. Surgery as a treatment option allowed patients to “not be a victim”, giving them hope that they can survive through a major medical procedure that is physically and mentally demanding.

Preparing for resective surgery requires more than clinical care. The sources of resilience available to patients leading up to and coping with a significant procedure demonstrate the importance of social support and multi-professional clinical input. This is especially important for a population that is prone to depression, social isolation and stigma.
Original languageEnglish
Number of pages1
Publication statusPublished - 2018
Event35th International Conference in Healthcare Quality and Safety (ISQUA) - Kuala Lumpur, Malaysia
Duration: 23 Sept 201826 Sept 2018


Conference35th International Conference in Healthcare Quality and Safety (ISQUA)
CityKuala Lumpur


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