UCLA

Background: There are approximately 50,000 children worldwide living in an “unresponsive wakefulness state/vegetative state” (UWS/VS). Technological advancements continue to extend life expectancy for people with life-threatening health conditions that would not have survived otherwise.Purpose/Aims: To understand the experiences of parents Whose Disabled Child is in a UWS/VS and residing in a skilled nursing facility (SNF). Specific aims include: (1) describing the impact on parents’ well-being, (2) exploring unique parental experiences during their child’s first year of residency at a SNF, (3) identifying key influences on parents’ decision-making and coping, and (4) examining factors that influence parental engagement with their child and social networks. iii Methods: This qualitative study utilizes narrative inquiry using a semi-structured interview guide and inductively analyzed the data to identify themes and codes that best inform the research question. Results: After eligibility screening, nine singles and five couples participated in interviews. Line by line coding was performed on all interview transcripts with reliability checked by two senior qualitative researchers. Four primary themes with 2-3 sub-themes organically emerged from the participants’ narratives to form a coherent and interconnected storyline that depicted a very subtle chronology of events and experiences. The four main themes include: (1) Enduring the Unexpected, (2) Navigating the Unknown, (3) Prioritizing Values in Decision-Making, and (4) Changing Relationships. Implications: Nursing research on this topic is limited and yet nurses play a key role in providing family-centered care and support for this vulnerable population. A deeper understanding of parent caregiving for these fragile children could be a valuable resource for healthcare professionals. Potential future interventions and suggestions to improve parental and family support were identified in the areas of emotional, social, and decision-making through the trajectory of the child’s chronic illness.