(Jensen MP, et al. 2017). Through focus groups and interviews with a group of clinician experts and caregivers, this study sought to identify the ways in which severe epilepsy impacts caregivers.

In the first part of the study, an expert panel of eight pediatric neurologists identified nine impact areas as potentially important to caregivers: 1. Work hours/employment of the caregiver, 2. Household work of the caregiver, 3. Family finances, 4. Emotional health of the caregiver, 5. Physical health of the caregiver, 6. Relationship with spouse/significant other, 7. Relationships with other children, 8. Relationships with friends, and 9. Sense of confidence in/self-efficacy for caregiving.

In the second part of the study, nineteen caregivers of patients with severe epilepsy participated in interviews, twelve of whom also participated in one of three small focus groups. This group agreed with the expert panel’s assessment of relevant domains with the exception of the impact on household chores. Caregivers believed the impact on their ability to perform household chores was not as significant as the impact in other domains. Caregivers discussed four broad domains with subsets of each: 1. Physical health (time to take care of one’s physical health, sleep quality, and fatigue), 2. Mental health (emotional health, sense of confidence in/self-efficacy for caregiving), 3. Social function (relationship with significant other, relationships with other children, and with friends), and 4. Financial resources (work hours/employment, family finances).

  1. Physical health: Caregivers discussed sleep deprivation the most, due to concerns about life threatening seizures during sleep and SUDEP. Caregivers felt unable to “turn off,” which led to fatigue and inability to stay physically fit. Comments included “I mean, there’s a reason that sleep deprivation is a torture device… I mean, everything about your physicality just lowers,” and “….one of the biggest differences in caring for a child with epilepsy versus maybe other chronic illnesses is your uncertainty at night and the profound lack of sleep..”
  2. Mental health:  The emotional impact and difficulty finding time for themselves and/or respite was difficult for caregivers. Unlike US caregivers, some caregivers from countries with socialized medicine reported that insurance covered professional caregivers, allowing them “breaks,” which they found useful. Some positive mental health impacts included increased self confidence and defined “sense of purpose” in life.
  3. Social function: Interestingly, caregivers reported that the impact on relationships was greatest during the early years and just after diagnosis. Once families had reached acceptance of their circumstances, this impact was not as substantial as other impact areas.
  4. Financial resources: Similar to social function, this impact area was most burdensome for caregivers during the early stages of diagnosis and treatment. Differences between the USA (and Australia), where caregivers had difficulty accessing social services for the patient and Europe, where social services were more accessible, appeared. Caregivers had difficulty paying for treatments not covered by insurance.

The article goes on to explain how the various measurement tools typically used to assess these areas fail to adequately measure the true burden of caring for a patient with severe epilepsy. The authors conclude families would benefit greatly from respite care by trained non-family individuals and interventions that could give families tools to cope with or buffer the effects of caregiving.

Jensen MP, Liljenquist KS, Bocell F, Gammaitoni AR, Aron CR, Galer BS, Amtmann D. Life impact of caregiving for severe childhood epilepsy: Results of expert panels and caregiver focus groups. Epilepsy Behav. 2017 Sep;74:135-143. doi: 10.1016/j.yebeh.2017.06.012. Epub 2017 Jul 19. PubMed PMID: 28734197