Degrees of Separation: Grandchildren's Experiences of Grandparental Brain Tumor or Stroke

The impact of acquired brain injury on family members is far reaching. Research has identified experiences of trauma, ambiguous loss and burden of care. Limited research has addressed the ripple effect of brain injury across the wider family. The study aimed to gain a detailed insight into the lived experiences of grandchildren of those who have experienced stroke or brain tumor. Ten participants (eight female and two males aged between 18 and 29) took part in semi-structured interviews about their experiences of grandparental stroke or brain tumor. Data were analyzed using interpretive phenomenological analysis (IPA). Four themes were identified. The data revealed a vivid experience of ambiguous loss, and grief experienced by participants. This was further exacerbated by being protected by family members which led to a sense of isolation from information about their grandparents’ condition. Participants described the secondary impacts on family unit that caused ripples throughout the family network. Finally, participants reported multiple barriers to accessing support that prevented them gaining the emotional and practical support they required. The study highlights the impact of brain tumor and stroke on the wider family unit and the need for systemic approaches to supporting families after brain injury.