Abstracts

Rationale: Previous research has indicated that chronic epilepsy can place a burden on families and disrupt family relationships particularly in patients with intractable focal seizures. However, few measures exist to capture the nature or complexity of these effects, and none are specific to epilepsy. Our aim was to develop a measure that could sensitively track altered family dynamics, and to examine the extent to which this related to the patient's experience of epilepsy. We purpose built a computer program ("Living with Epilepsy") to interactively capture information about the patient's current psychosocial functioning and adjustment to epilepsy and its treatment. The program allows patients and family members to construct a ‘family map' that graphically depicts family cohesion and closeness, with associated ratings of perceived support. Methods: Participants comprised 35 (19 female) adult focal epilepsy patients (16 mesial temporal focus) and 34 family caregivers (data not reported here). Patients had a mean age of 36 years (SD=12), a mean FSIQ of 101 (SD=14), and 19 (54%) had a partner or spouse. At the time of participating, 15 lived with parents, 14 with a partner, 3 in shared accommodation, and 3 lived alone. We used the Family Adaptability and Cohesion Evaluation Scale (FACES-IV) to assess the convergent validity of the program. Results: Inspection of the family maps indicated three broad family types: (1) ‘Well adjusted' (37%), (2) ‘Enmeshed' (37%), and (3) ‘Fractured' (26%; see Fig. 1). In well adjusted and enmeshed families, 92% of patients rated their daily caregiver as highly supportive in comparison to only 56% of patients in fractured families (p=0.019). Moreover, the distance on the map between the patient and daily caregiver was significantly smaller for enmeshed families (mean = 3.6mm) compared to well adjusted (mean = 13.6mm, p=0.019) or fractured families (mean = 20.2mm, p<0.001). However, patients in enmeshed families (62%) felt less able to talk about their epilepsy compared to those in well adjusted (31%) or fractured (8%) families (p=0.019). There was good agreement between the nature of the family map and patient ratings on the FACES-IV for family cohesion, flexibility, disengagement, rigidity and chaotic relationships, with those from well adjusted families scoring highest on communication and family satisfaction scales. Conclusions: Our study demonstrates the utility of a computer-based interactive measure to capture the complex effects of intractable seizures on family dynamics. It shows that the majority of families living with chronic epilepsy (63%) are affected by enmeshment or fracturing of relationships, which in turn, impacts the patient's experience of perceived support, family satisfaction, and being able to talk about epilepsy. This epilepsy-specific measure provides new opportunities for assessing family functioning, including at the time of first seizure diagnosis or surrounding treatment interventions, such as epilepsy surgery.