Maternal Perceptions About Parenting a Child Affected by Catastrophic Epilepsy : A Phenomenological Study

This qualitative study explored the maternal perceptions of life with a child affected by catastrophic epilepsy which is a severe form of childhood epilepsy that includes difficult-to- control seizure activity intellectual disability other developmental disabilities and a poor prognosis. Limited qualitative research exists regarding the lived experience and meaning of maternal caregiving for children with this stigmatized severely debilitating condition. This hermeneutic phenomenological study informed by van Manen (1990) involved two audio-recorded in-depth interviews with each of five participants who were the biological mothers of children with a catastrophic form of epilepsy. The essence of the study's findings was one of maternal commitment to a beloved child in a seizure-centered life. The themes that emerged from the data shared by study participants were: "A Child with Catastrophic Epilepsy: `Waiting for the Other Shoe to Drop '" as a response to their child's daily unpredictable and potentially life threatening seizure activity; "Mobilizing resources: A Constant Preoccupation and Effort " to meet their child's complex needs; "Providing Care: An Often Overwhelming Responsibility " due to the intensive organization and provision of intensive on-going physical and psychosocial care; "Effects of Care on Caregiving Parents: `Confined to a Helpless Situation '" from which neither they nor their children could escape and over which they had little control; and "Caregiver Coping: Celebrating the Child While Mourning the Losses." Mothers who participated in this study deeply loved and admired their children and found joy meaning and purpose in their experience as their child's primary caregiver despite the many challenges that such caregiving presented The theory of ambiguous loss (Boss 2006 2010) provides insight into a unique kind of loss that reflects a response to someone who is physically present but psychologically absent as exemplified by children with catastrophic epilepsy who were described by their parents in this study. The parental experience that may have reflected ambiguous loss in this study complicates both grief and relationships and prevents closure in response to the loss. Participants in this study however engaged in behaviors that were consistent to varying degrees with guidelines proposed by Boss that contributed to their ability to cope with the ambiguous loss they may experience. Children with catastrophic epilepsy present with complex health issues that are challenging and sometimes life-threatening. Caregivers are challenged by an overloaded healthcare system where busy health care providers care for typically developing children as well as those with special needs. Parents of children with catastrophic epilepsy face particular challenges in addressing their children's health-related needs due in part to the frequency with which they require provider assistance including informed responses to their questions and concerns about their child. Research is warranted to investigate health care provision alternatives such as palliative care that would involve parents as respected partners in health care planning and decision-making.