Abstract
Purpose: To examine family perceptions of physiotherapy provided to relatives in vegetative or minimally conscious states. Method: Secondary thematic analysis of 65 in-depth narrative interviews with family members of people in vegetative or minimally conscious states. Results: Families place great significance on physiotherapy in relation to six dimensions: “Caring for the person”, “Maximising comfort”, “Helping maintain health/life”, “Facilitating progress”, “Identifying or stimulating consciousness” and “Indicating potential for meaningful recovery”. They can have high expectations of what physiotherapy may deliver but also, at times, express concerns about physiotherapy’s potential to cause pain or distress, or even constitute a form of torture if they believe there is no hope for “meaningful” recovery. Conclusion: Physiotherapists can make an important contribution to supporting this patient group and their families but it is vital to recognise that family understandings of physiotherapy may differ significantly from those of physiotherapists. Both the delivery and the withdrawal of physiotherapy is highly symbolic and can convey (inadvertent) messages to people about their relative’s current and future state. A genuine two-way dialogue between practitioners and families about the aims of physiotherapeutic interventions, potential outcomes and patients’ best interests is critical to providing a good service and establishing positive relationships and appropriate treatment.Implications for RehabilitationFamilies of people in PVS or MCS consider physiotherapy as a vital part of good care. Clear communication is critical if therapeutic input is withdrawn or reduced.The purpose of physiotherapy interventions can be misinterpreted by family members. Physiotherapists need to clarify what physiotherapy can, and cannot, achieve.Families can find some interventions distressing to witness – explaining to families what interventions involve, what they can expect to see (and hear) may be helpful.Physiotherapists and families can attribute different meanings to physiotherapy. Physiotherapists need to identify how families view interventions and modify their explanations accordingly to enhance information sharing.
Highlights
Brain injury is the leading cause of death and disability in young adults in the western world
The significance accorded to physiotherapy is striking given that this was not the focus of the original study and interviewees were not usually directly asked about it
We explore two additional themes: how interviewees felt about the withdrawal of physiotherapy services and their reflections on the potential of physiotherapy to cause pain and distress, which could even be considered to constitute a form of ‘‘torture’’ once relatives felt there was no longer any realistic hope of recovery that the patient would consider ‘‘meaningful’’ or ‘‘worthwhile’’
Summary
Brain injury is the leading cause of death and disability in young adults in the western world. ‘‘Disorder of consciousness’’ is an umbrella term referring to coma, the vegetative and the minimally conscious states (VS and MCS) – where the patient has no, or only minimal and intermittent, awareness of self and environment [3,4]. Such a disorder can be a temporary or long-term condition: some patients will move through stages of coma, vegetative and minimally conscious states and emerge into full awareness while others will remain in a vegetative or minimally conscious state for the rest of their lives [5].
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