Hearing from Children: Exploring Children's Experiences of Parental Traumatic Brain Injury
This study explored the experiences of children living in the context of parental traumatic brain injury (TBI) within New Zealand. Brain injury can impact a person’s participation in their regular social roles within the family, compromising their wellbeing, and the quality of life of others within the family. Available evidence emphasises the importance in attending to the needs of adult relatives of acquired brain injury (ABI) patients who may be experiencing issues of depression, burden and loss after injury. Children living within the family context after ABI, however, appear to be overlooked. A literature review completed as part of this thesis highlighted a relatively small and heterogeneous sample of studies that have investigated the perspectives of children living in the context of parental ABI to date. Findings of these studies demonstrated children are impacted by parental ABI, experiencing a sense of shock and loss after the event, and also taking on active roles to try and support, cope and make-sense of family life after injury.
The current study drew on an interpretive methodology, using hermeneutics, to explore children’s narratives about their experiences of life after parental TBI. Children were regarded to be the experts and gatekeepers of knowledge about their experiences. Seven children, from five families, chose to participate within the study. Interviews conducted with children acknowledged their rights, needs and capabilities as research participants. A range of data collection methods were used, drawing on a ‘toolkit’ of interview techniques that could be tailored to the individual requirements of each participant. Both data collection and analysis were informed by an understanding of experience as lived, with a focus on the lifeworld existentials of lived space, lived body, lived time and lived relation.
The findings were constructed into themes that could provide insight into aspects of children’s experiences. Analysis identified how children faced an altered sense of being ‘at home’ when living in the context of parental TBI. Children’s stories revealed how parental TBI impacted upon many of the taken-for-granted expectations in the home; they experienced disruption to the roles individuals performed and the ways in which their family usually interacted together with changes to the presence, availability and mood of both their injured and non- injured parent. These experienced changes to family cohesion and rhythms meant children faced new (and changing) expectations, opportunities and constraints in their home with regard to their play, behaviour and interactions with their siblings and parents. Where there were changes to usual family-life, there were also responses and adaptations. Children shared examples of the accommodations they made in order to respond to the new (and at times scary, confusing and frustrating) behaviours and expectations that injury brought into life at home. They played an active role in supporting their parents and contributing to efforts to regulate family life by attuning and adjusting to new ways of being as a family.
The study findings support and extend existing research on the topic, drawing attention to the impact parental TBI has on children in the home, and also their efforts to influence and moderate the impact of injury on their parents. Children’s accounts highlighted the significance of home as a ‘special space experience’, which is altered when TBI intrudes on family life, introducing change and uncertainty. The work of recovery involves renegotiations of the space of home as a family. Children are actively engaged in interdependent, reciprocal relationships within the family system and their position needs to be acknowledged. Adopting a whole family approach within the context of adult rehabilitation, which includes taking notice of children, has the potential to offer support to the family as a whole, and also the possibility of enhancing recovery for the individual with TBI.