An Exploration of the Experience of Mothers Whose Children Sustain Traumatic Brain Injury (TBI) and Their Families

Abstract

This study aims to describe and explore the lived experience of mothers whose children, aged 0-16 years, have sustained a traumatic brain injury (TBI). Mothers were interviewed between 2 and 10 years following the TBI. The study employed a qualitative method, interpretative phenomenological analysis (IPA), following semi-structured interviews with 10 mothers. Validity measures included independent audit of the analysis. The analysis generated themes of ;changes to and loss of the past child', ;effects on mother's health', ;mother's process of coping and support', ;changed roles', ;effects on the whole family' and ;contact with services'. Discussion of the links between participants' accounts and grief and attachment theories is provided, with a view to informing assessment and rehabilitative practice with children and families. The clinical implications of mothers' descriptions for psychological intervention and service delivery are explored.

Caregivers’ voices: The experiences of caregivers of children who sustained serious accidental and non-accidental head injury in early childhood

“…This study is consistent with the head injury literature describing caregivers' experiences of poor transition from hospital to community services, inadequate information (Clark et al, 2008) and significant and persistent caregiver burden. This burden includes mental health issues (Wade et al, 2002), family stress and disorganisation (Wade et al, 2006), unmet needs for social and healthcare services (Aitken et al, 2009;Slomine et al, 2006) and the constantly evolving challenge of supporting the child's social and educational participation (Bedell et al, 2005).…”

“…Few published studies have followed children or their families for this duration (Bedell et al, 2005;Clark et al, 2008). Previous literature suggests that the effect of childhood head injury on families may be less evident in the short term (Anderson et al, 2005;Rivara et al, 1996).…”

The impact of pediatric traumatic brain injury (TBI) on family functioning: A systematic review

“…Across the studies, the child's mean age ranged from 5 years to 14 years; in three studies, the child's age was older -between 12 [19,20] and 14 years [29]. In four studies, age at injury was reported to be between 5 to 5.9 years for all study groups [14,22,27,28], and in two studies, the age at injury was reported to be between 9 years to 10 years [10,15]. All studies included in the review reported family income while only 6 studies reported parental edu- Table 1 Study and sample characteristics…”

“…It has been suggested that parents who have a strong support system experience less life stress than parents who lack such a support system [13] and that the availability of solid social support decreases parental stress [14]. The majority of literature on parental coping strategies related to a child's TBI is based on the experiences of mothers who are most often the primary caregivers [15,16]. Recently, however, researchers have explored how fathers cope with this event.…”

Parenting a child with a traumatic brain injury: Experiences of parents and health professionals

“…There currently remains limited 'bottom-up', qualitative research into family experiences following paediatric TBI to identify specific consumer opinions and needs and to guide future interventions. In the existing literature, one qualitative study found that mothers often report difficulty coping with the changes in their child, feelings of loss, post-traumatic stress symptoms, poor physical and mental health, trouble adjusting to new family roles and a negative impact on the entire family [28]. Another study found that parents experiencing high distress following their child's injury commonly had concerns regarding the child's academic, social and emotional functioning, as well as general concerns for the sequelae of the injury [29].…”