The need for and effectiveness of an individualised therapeutic programme for people living with prolonged disorders of consciousness in non-specialist care settings in the Republic of Ireland
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Introduction: Disorders of consciousness are an increasing phenomena and people are living longer with these conditions. The care needs begin with acute medicine and ICU care and frequently end up with life-long nursing care (Royal College of Physicians [RCP], 2013). Little is known about the care and treatment this clinical population receive long-term. This group of patients will require care for many years following injury (Fins, 2013). This can place strain on budget limited healthcare systems. Interventions should be aimed at minimising carer burden and developing individualised programmes (Wheatley-Smith et al., 2012). Local, individualised, timely and integrated services which are flexible and responsive to personal need are the goal for future neuro-rehabilitation services (Health Service Executive [HSE], 2011). This study developed and implemented such local individualised programmes for people with prolonged disorders of consciousness (PDoC). Method: Firstly a nationwide cross sectional survey was conducted in order to evaluate current care services and determine if there was a need for the development of a specialised therapeutic programme. Following this, 5 in-depth case studies were conducted in 4 long-term residential care settings. An individualised therapeutic programme was developed and implemented for each participant. Each intervention was 3-6 months in duration. This study was evaluated from three perspectives: the participant with PDoC, their family and the professional staff caring for them. The behavioural changes for participants were measured using three standardised assessments, the Wessex Head Injury Matrix (WHIM), the Sensory Modality Assessment and Rehabilitation Technique (SMART) and the JFK Coma Recovery Scale Revised (CRS-R). Quantitative measures were also used to record changes in family members and professional care staff’s knowledge, anxiety, caregiver strain and attitudes towards people with PDoC. Results: Rehabilitation services for people with PDoC in this country for found to be very limited. There is a low level of follow up and re-assessment for this population also. When evaluating a therapeutic programme for people with PDoC significant positive statistical and clinical changes were recorded for participants, family members and care staff. This study highlights the value and importance of such non-pharmacological interventions for PDoC and their practical implementation in nursing home settings. Staff attitudes towards care were shown to have significantly changed following the study. Family strain and anxiety were also reduced as a result of this study. A positive impact on reducing misdiagnosis and increasing behavioural repertoire was shown for participants. Conclusion: People with PDoC are cared for in a multiple of residential care settings and there is considerable variation in the care and treatment services they receive long-term. In this study in-depth case study methodology contributed rich and valuable data to the study of treatment for PDoC. This study supports the provision of long-term rehabilitation for people with DoC and identifies how it can be implemented in non-specialist clinical environments.