Parents Caregiving for Children after a Traumatic Brain Injury: Structuring for Security

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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.

Literature review

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., 1998; Nadebaum, Anderson, & Catroppa, 2007; Taylor et al., 2002). How such findings might relate to parental efforts to address their child's behavioural disturbances, reduced motivation and initiation, school performance and lack of friends (Prigatano & Gray, 2007) is unclear.

Studies specifically addressing sequelae for parents confirm psychological symptoms such as anxiety and depression, and increased levels of burden and stress (Wade, Drotar, Taylor, & Stancin, 1995). Importantly, studies also suggest parental stress is associated with the physical, psychological and social consequences for the child (Kao & Stuifbergen, 2004; Taylor et al., 2001; Wongvatunyu & Porter, 2005). One such study concluded that because the family environment influences children's post-injury skills, "developing interventions that target family functioning may improve outcomes" (Nadebaum et al., 2007, p. 723). Further research into the ways parents undergo emotional and behavioural adjustments after a child's traumatic brain injury has been recommended as a basis for guiding delivery of rehabilitation services (Clark, Stedmon, & Margison, 2008). To date however, where outcomes for families and children have been considered, the focus has been on measuring the relationships between the family environment, family outcomes, and child outcomes. The caregiving occupations carried out by parents which arguably contribute to family functioning, parental adjustments and child and family outcomes, remain relatively unexplored.

It has been suggested by one study that over time, parents develop strategies around setting up openings for their children's participation, developing their children's abilities, and managing their children's behaviours (Bedell, Cohn, & Dumas, 2005). However, this study specifically focussed on describing parenting strategies targeted at particular problems to enable the child's participation in activities. The variety of caregiving occupations which might be of concern to parents, the meanings underpinning such occupations, and the way the occupations might unfold over time were not explored. Further research is needed to understand the range of occupations involved for parents who are caregiving for their child who has sustained a severe traumatic brain injury. Such research has the potential to inform effective occupational therapy practice within a family context.

Method

Grounded theory methodology was selected because it enables the formulation of theory grounded in real life situations (Charmaz, 2000; Strauss & Corbin, 1998). After receiving ethical approval from a Ministry of Health Ethics Committee, a convenience sample of parents with experience in caregiving for a child with a severe traumatic brain injury was sought. To capture a range of people and caregiving phenomena (Strauss & Corbin), inclusion criteria were kept broad; parents living in, or in the area surrounding one main city centre, with a 3-17 year old child at least 3 months post severe traumatic brain injury. Parents were required to be able to express ideas in conversational English to enable adequate interpretation of the subtleties contained in dialogue necessary to the analysis in a grounded theory study.

Therapists, including physiotherapists, occupational therapists, and speech language therapists who were employed within two community-based rehabilitation service provider groups passed on written information, consent forms and a brief questionnaire to parents who met the inclusion criteria. The questionnaire captured contact information and brief demographic details such as the child's date of birth, date of and age at injury, number of siblings, parent roles, family supports, and rehabilitation professionals involved. The severity of injury was determined by the recruiting therapists from children's records, and was identified by Glasgow Coma Scale scores (Teasdale & Jennett, 1974) recorded at the time of injury. Although the validity of using this scale with children has been questioned (Rush, 1997), the researcher's clinical experience indicated that it was the tool most consistently used at that time in the hospital setting. All eight parents who gave informed consent were initially accepted into the study. Two families who had been accepted into the study but who later were not included due to theoretical saturation were thanked for their …