Methodological considerations

RESEARCH WITH PICU FAMILIES: METHODOLOGICAL CONSIDERATIONS 

Ethics: Parents are highly anxious and so their ability to give informed consent at the point they are easiest to locate (ie when the child is on the unit) is clearly an issue. They are also understandably protective of their children and consequently not always prepared to involve them in research. Finally in some cases, their own avoidant coping may work against their agreeing to take part or allowing their child to take part in psychological research, if they realise this will involve discussion of traumatic events.

Notwithstanding these issues,  a recent survey has shown that the majority of participants do not regret taking part in research into the psychological impact of traumatic experiences and many find it therapeutic (Newman and Kaloupek, 2004).

Medical: By definition children on PICU are critically ill. It is therefore usually not possible to talk to them acutely because they are unconscious /heavily sedated.

Children are admitted to PICU with a wide variety of medical and surgical problems. These include endstage cancer; road accident; monitoring after an elective operation; sepsis and congenital problems. The nature of the families’ previous experience of hospital, the types of procedure, medication and complications the child is exposed to and the prognosis are therefore more heterogeneous than in other paediatric settings.

Approx 5-10% of children die during admission and there is an elevated risk of death in following year (3% in my last study). Although most survivors make a good physical recovery, some children are left with serious disfigurement, neurological difficulties or behaviour problems eg after brain injury.

Demographics: The age range of patients treated on PICU is 0-16 yrs, but the majority of children admitted are aged under 3. This has implications for direct communication with children and assessment of delirium and psychological distress.

Children from socially deprived areas and ethnic minorities are over-represented on PICU. This has implications for families’ access to resources such as private transport and means that in some cases interpreters are needed.

There are fewer than 30 units in the UK. These tend to be sited in large hospitals in the centre of urban areas, which means that the distances families live from units are sometimes quite substantial, making it difficult for them to return to be interviewed. (Distance is less of an issue  for adult ICUs, as there are many more of these units nationally)

Parents of children on PICU frequently have other children who need to be taken care of.  This also has logistic implications  both in terms of the feasibility of research interviews and for the family's attendance for therapy or other forms of intervention, eg parent groups.

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