In good paws: A qualitative investigation into patients’ and caregivers’ experiences with seizure dogs

Objective:

The EPISODE trial demonstrated that seizure dogs can reduce seizure frequency and improve quality of life in patients with severe refractory epilepsy. This qualitative study explored patients’ and caregivers’ lived experiences with seizure dog partnerships near the end of the trial's 36-month follow-up to understand their perceived impact in daily life.

Methods: 

Semi-structured interviews were conducted with seventeen patients in the EPISODE trial and their caregivers. At the time of the interview, all patients had a seizure dog, either certified or in the final phase of training towards certification. Transcripts were analysed thematically. 

Results: 

Patients described substantial emotional, social, and practical burdens associated with epilepsy and elaborated on how the introduction of a seizure dog shaped their subsequent experiences. Seizure dogs were described as fulfilling multiple roles, including first responder, emotional support companion, potential seizure predictor, source of public attention and a responsibility. Patients experienced benefits related to emotional stability, daily functioning, social participation, and seizure frequency. Challenges concerned training and care demands, unsolicited public attention, increased visibility of the condition, and unmet expectations, particularly regarding alerting behaviour. Caregivers reported reassurance from the dog's presence and reduced need for supervision, while maintaining vigilance. While a sense of safety and independence formed common ground in patients’ and caregivers’ accounts, the perceived impact on daily life varied widely.

Conclusion: 

This study identifies perceived outcomes of seizure dog partnerships relevant to patients and caregivers, elucidates reasons for variation in experiences, and provides patient-centred insights to support realistic expectations and inform broader discussions on the potential of seizure dogs in epilepsy care.