Parents Caregiving for Children after a Traumatic Brain Injury: Structuring for Security
Jones, Margaret, Hocking, Clare, Wright-St Clair, Valerie, New Zealand Journal of Occupational Therapy
Occupational therapists are concerned with enabling people to engage in the activities and tasks that are meaningful to them in their worlds (Townsend & Polatajko, 2007). This may include providing services to children who have sustained a traumatic brain injury and have difficulties with occupational performance (Rogers, 2005). In a family-centred service delivery framework (Law, Rosenbaum, King, King, & Evans, 2003), it is important to consider the child in the context of their family. The occupations of the child and their parents are seen as interdependent, and both should therefore be considered by the occupational therapist when developing and delivering interventions. While therapists have general understandings about the things parents will need to do to raise a child who has had a brain injury, little is known about what is actually involved in their caregiving occupations. Having that information would assist therapists to offer advice in keeping with the parents' concerns and circumstances. Therefore, this small-scale, qualitative study was designed to develop theory in response to the research question "What is involved for parents in the day-to-day occupations of caregiving for a child who has had a severe traumatic brain injury?" Simultaneously, things that assist and things that hinder those occupations are examined.
Traumatic brain injury is defined as "injury to the brain resulting from externally inflicted trauma" (New Zealand Guidelines Group, 2006). Brain injuries may be classified for their severity by the depth and duration of coma, and by the duration of posttraumatic amnesia (New Zealand Guidelines Group). Severe traumatic brain injuries are generally classified as a score of consciousness on the Glasgow Coma Scale between 8-3, where 3 is the lowest possible score (James & Trauner, 1985; New Zealand Guidelines Group; Teasdale & Jennett, 1974). While most children who sustain mild injuries go on to make a good recovery (Ponsford et al., 2001), those with a severe traumatic brain injury may experience global changes in function, resulting from diffuse injuries, or specific deficits (e.g. movement, memory, sensory processing, or communication skills) (Appleton, 1998; Ylvisaker, 1998).
Traumatic brain injury at any stage in childhood can have serious consequences for both the child and their family (Appleton, 1998; Taylor et al., 2001), with severe injuries generally associated with worse sequelae (Babikian & Asarnow, 2009; Fay et al., 2009). The functional outcomes for children vary according to gender and age at injury; the severity, type and site of injury; and individual differences in brain function, experience, personality, and skills (Demellweek, O'Leary, & Baldwin, 1998; Ylvisaker, 1998). Parents are reported to experience ongoing and increased levels of stress and burden as they care for their injured child. The community also accrues significant ongoing costs in terms of providing interventions and supports through into adulthood and beyond (Kao & Stuifbergen, 2004; New Zealand Guidelines Group, 2006).
After a severe traumatic brain injury, it is likely to be many months before children can attend school full-time (Jaffe et al., 1993). It is indicated that delays in specific skill attainment take place if injury occurs at times that are critical for skill development and brain maturation (Anderson, Catroppa, Morse, Haritou, & Rosenfeld, 2005; Chapman & McKinnon, 2000; Ewing-Cobbs, Levin, & Fletcher, 1998; Levin, 2003). Further, the likelihood of frontal lobe involvement, the emotional trauma of the accident, and variability in functioning may result in behavioural changes, stress disorders and poor outcomes (Fletcher, Ewing-Cobbs, Miner, Levin, & Eisenberg, 1990; Luis & Mittenberg, 2002; Sherwin & O' Shanick, 2000, 1998; Ylvisaker, Szekeres, & Feeney, 1998). The majority of outcomes studies have focused on the children's intelligence, cognition, motor and perceptual skills, psychosocial functioning and social skills, and ability to carry out daily living and classroom tasks (Ewing-Cobbs et al. …