Julie Latchem1, Jenny Kitzinger2, Celia Kitzinger3. 1. a School of Social Sciences, Cardiff University , Cardiff , UK . 2. b School of Journalism, Media and Cultural Studies, Cardiff University , Cardiff , UK , and. 3. c Department of Sociology , University of York , York , UK.
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 REHABILITATION: Families 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 Clear communication is critical if therapeutic input is withdrawn or reduced.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.
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 REHABILITATION: Families 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.
Entities:
Keywords:
Disorders of consciousness; family; physiotherapy; vegetative
Authors: Owen M Katalinic; Lisa A Harvey; Robert D Herbert; Anne M Moseley; Natasha A Lannin; Karl Schurr Journal: Cochrane Database Syst Rev Date: 2010-09-08
Authors: Conny A M F H Span-Sluyter; Jan C M Lavrijsen; Evert van Leeuwen; Raymond T C M Koopmans Journal: BMC Med Ethics Date: 2018-02-22 Impact factor: 2.652