A ‘biopsychosocial’ model for recovery: A grounded theory study of families’ journeys after a Paediatric Intensive Care Admission

Summary

Paediatric intensive care has a significant impact on the children and families who experience it. This effect continues post-discharge as the family attempt to recover from their ordeal. This article begins with an exploration of what makes a Paediatric Intensive Care Unit (PICU) admission potentially so traumatising and then examines current models for recovery which exist in the literature. These remain sparse and do not provide a coherent model for recovery after PICU. This paper therefore presents research which aimed to develop a model to understand the recovery journey for families. Children who had been PICU patients and their parents were interviewed and the transcripts analysed using grounded theory. Participants highlighted the importance of physical, psychological and social recovery and these have been integrated into a biopsychosocial model of recovery. Finding and accepting a ‘new normal’ were the culmination of this biopsychosocial journey. This paper concludes that an integrated approach to recovery is necessary and makes some recommendations for further research and clinical practice.

Introduction

An admission to a Paediatric Intensive Care Unit (PICU) can be significantly traumatic for both young people and their families. The challenges continue beyond the hospital (Bronner et al., 2010), as families then have to negotiate the complex recovery period and simultaneously manage their feelings about the admission. Whilst a great deal is now known about the admission experiences we still lack an in-depth understanding of how children and parents’ negotiate recovery following PICU discharge (Colville et al., 2009).

Over 15 000 children (aged 0–15) per year are critically ill and require intensive support during their hospital admission (Draper et al., 2008). A PICU caters for the most seriously ill babies and children providing a high level of observation and intensive medical care.

PICU admission can have a large psychological effect on children. Reasons for this include ‘The highly invasive technological interventions, lack of control over events, severity of illness, and high levels of parental distress…’ (Rennick et al., 2008, p.252). Close proximity to parents can be unusual for older children, whilst for younger children separations from parents during procedures can be equally distressing. Other reasons include displacement from home and friends and witnessing the distress of other children and families.

However, whilst the experience is traumatising for a large number of children, for others who experience an admission there is no evidence of trauma (Colville et al., 2009). For some children the support from nurses and their parents may mediate against the painful and uncomfortable experiences they are having. Some children also note the positive changes they have observed since admission, such as developing maturity or a greater sense of perspective on illness (Colville, 2004), although there is a paucity of information on positive experiences which may be related to the reality that PICU admission is difficult for all involved.

Whilst it is the child who is ill, a PICU admission impacts on the whole family, particularly the parents. Post-traumatic reactions are observed in parents, particularly if they are concerned their child may die or if the PICU admission is unplanned (Balluffi et al., 2004, Bronner et al., 2009, Colville, 2001). Parents worry about the level of pain their child is experiencing and the potential for a poor outcome, both physically and psychologically (Salisbury et al., 2007). They also report difficulties after seeing other children dying or in considerable distress (Colville et al., 2009). Further, they find the highly technological environment of PICU overwhelming, but do welcome knowing that they are in the right place. No correlation has been found between the child's illness severity and maternal distress (Balluffi et al., 2004, Bronner et al., 2010, Colville and Gracey, 2005). This all suggests that there are key mediating factors for both the parents and the children after a PICU admission, but the factors are not necessarily the same for each group.

To date there are few models which examine children's psychological recovery after health-related trauma or any models which look systemically at family recovery. However, there are theories within the field which are helpful in providing a framework for our understanding. Salmon and Bryant (2001) consider the developmental issues following exposure to trauma and propose that cognitive theories must include the differing knowledge, language development and emotional regulation skills of the child.

Finkelhor and Browne's (1985) model highlights key influences of trauma on psychological functioning, such as the impact of powerlessness and betrayal. Their paper considers how these might influence a child's ability to recover. Although their model was designed specifically for children who had been sexually abused, Stevenson (1999) noted that it could be useful for other types of trauma. For PICU admission powerlessness would appear to be particularly poignant as children have so little control over their bodies (e.g. causing them pain) or what others do to them (e.g. invasive medical procedures). If parents are perceived to do nothing to prevent painful experiences or are seen to actively endorse them then children may also feel betrayed. Glaser (1991) later added further components to this model, including the recognition of extreme fear and isolation which could also be present for children in PICU, who are removed from their peers and aware that something was seriously wrong with them.

In healthcare a ‘dualistic thinking’ mindset (Sperry, 2006, p.26) can be the dominant perspective with the result that there is a lack of integration of the mind and body. This still exists in contemporary medical practice (e.g. Levant, 2005, Sperry et al., 2008) and results in ‘the supremacy of the bio-medical model’ (Sperry, 2006, p.26). In paediatric work medical staff are noticeably more psychologically minded and will consider referrals to psychological services when a psychological element to an illness is detected. However, this often remains as an adjunct to treatment rather than being an integrated part of the holistic management of the child's presenting difficulties from the outset.

Although the biopsychosocial model (Engel, 1977) is recognised theoretically, operationally it remains on the periphery of clinical practice in acute medical settings. The acknowledgement of social and psychological factors impacting on overall health and wellbeing in a comparable way to biological or medical factors is necessary to provide an understanding of children's complex responses to physical injury. Whilst the biopsychosocial model provides a framework for ‘assessment, diagnosis, treatment and prevention’ (Sperry, 2006, p.26) there is little evidence it has been applied to recovery either in physical or in mental health settings, despite the finding that families describe their experience in psychological and social terms as well as highlight physical difficulties (Shudy et al., 2006). Perhaps the explanation for this lies with the thinking that the model is ‘primarily descriptive in function, rather than explanatory’ (Vetere, 2007, p.5).

Most other relevant models tend to focus on either cognitive or emotional appraisals and subsequent strategies for recovery following trauma and leave out the physical or biological elements. For example the concept of locus of control reflects the way an event is interpreted as the precursor to either recovery or ongoing mental health difficulties (Capps and Bonanno, 2000, Weiner, 1992). Models of coping categorise people in a number of ways, including as ‘sensitisers or repressors’ (Field et al., 1988) or as task-focused, emotion-focused or avoidance-focused (Hoge et al., 2007). These models do not take account of coping mechanisms being situation-dependant or that people may employ a number of strategies rather than relying on just one way of coping.