Improving services for patients with disorders of consciousness: Implementation of a family education package and

multidisciplinary team management guidelines on the Neurosciences Unit at the Princess Alexandra Hospital

Erin Kelly (SP) Maeve O’Neill (PT) & Anna O’Gorman (OT)

Rainbow Travelling Scholarship Awarded June 2018

Ethics & Governance Approval June 2018

AH-TRIP

Background• Post severe acquired brain injury (ABI), patients commonly present

with a disorder of consciousness (DOC):– unresponsive wakefulness state (UWS) / vegetative state (VS) OR

– minimally conscious state (MCS)

• Management of patients with DOC is specialised and challenging work which requires a cohesive and consistent MDT approach for best patient outcomes.

• PAH setting = anecdotal evidence suggests that upon transfer to the Neurosciences Unit (2C) from ICU, patient’s families feel overwhelmed and unsure about how best to support their family member and provide appropriate level of stimulation, avoiding over-stimulation

• Increased length of stay on the acute wards for patients with severe ABI frequent delays in transfer to subacute units

What is the clinical problem?Family:

• Family members have minimal understanding of disorders of consciousness (DOC) on transfer from ICU

• Family members wanting to assist with the patients’ recovery however unsure what they can do

• Concerns raised by families in recent years due to inconsistent education delivered at ad hoc time points

Patients:

• Recent literature supports early sensory stimulation of patients with DOC

• Need for standardized resources to ensure consistent education and care

What is the clinical problem?

Staff:

• Rotational Allied Health staff with varying levels of experience with this population

• Nursing staff with varying levels of experience -inconsistencies noted in their explanation of care to patients and family members and their ability to identify / avoid over-stimulation

RESULT:

• Development of an education package (consisting of education resources & MDT management plan) for both staff and for family members of patients with DOC

Project Aims

• To enhance MDT management of patient’s with DOC and empower families in their loved ones care.

• Implement a consistent staff and family education package:

– Standardised staff inservice & MDT management guidelines

– Family education package to patient’s families regarding DOC and sensory stimulation

What is the Evidence?

• Recent literature supports the importance of early distinction between UWS and MCS and the need for healthcare professionals to monitor progress of patients with DOC and address their needs for rehabilitation.¹

• There is significant literature to support the implementation of early sensory stimulation with patients with DOC as part of their rehabilitation program.²

1. Faugeras, et al., 2017; Pignat, et al., 2016; Yelden, Sargent, & Samanta., 20172. Abbate, et al,. 2014; Abbasi, Mohammadi & Sheaykh Rezayi, 2009; Lombardi, et al., 2009; Padilla & Domina, 2016

What is the Evidence?

• Current research does not measure the effects of timely education regarding DOC and sensory stimulation on family members, when working with this population within an acute snor does it measure the impacts of a standardised MDT management plan on staff skill and confidence etting.

• The Royal College of Physicians (RCP) Guidelines (2013) suggests families of these patients often experience severe distress requiring active and collaborative support from the MDT.

Royal College of Physicians Guidelines (2013). Defining criteria and terminology. Prolonged Disorders of Consciousness: national guidelines, 1-13.

What is the Evidence?

• Applicability to our system:• Early education benefits:

- Assist families’ knowledge of their family member’s brain injury

- Increase understanding regarding the health service role and aims

- Provide key target points for therapy that families can participate in delivering

- Assist transition through the spectrum of care from acute to rehabilitation.

• This project supports the Planetree Model through involvement of families as partners in the care experience.

• Encourages the participation of families in the patient’s rehabilitation structured therapy activities targeting the senses of sound, smell, sight, taste and touch as part of the sensory stimulation plan.

Research Project Plan• Ethics & Governance approval June 2018

• Rainbow Scholarship awarded June 2018

• Consent potential Nursing & Allied Health Staff participants

• Pre- surveys to staff participants

• Education to Staff re: project & MDT Mx plan

• Consent family member participants

• Pre- surveys to family member participants

• Education to family members using the DOC Mx plan & Sensory Stimulation plan

• Post- surveys to FM participants ~3mnths post

• Post- surveys to Staff participants ~6 – 12 months post

Resource Development• Sensory Preference Questionnaire

• Sensory Stimulation Plan

• DOC Management Plan

• MDT Management Plan

• Above resources adapted for the Acute setting from Caulfield ABI Rehabilitation Unit with permission

Sensory Preference Questionnaire

• Questionnaire given to patient’s family members re: patient hobbies, favourite smells, tastes etc.

Why do we need this information?

• It has been proven that patients in a DOC prioritise familiar sensory stimulation (i.e. familiar smells, sounds, voices etc. )

• This information ensures the patient is seen as a person in line with Planetree principles & receives holistic care

• Used to develop the Sensory Stimulation Plan

Sensory Preference Questionnaire

Sensory Stimulation Plan

• This is a specifically tailored patient plan developed by the AH team for the patients family members to:– provide direction re: sensory stimulation tasks

– what to look for during the stimulation

– to involve family members in the patients care

– to increase duration of sensory stimulation

• Ensure family members are provided education regarding importance of rest for brain healing and preventing overstimulation.

DOC Management Plan

• Provides general written information to families and staff on DOC management

• Addresses general recommendations regarding visitors, sleep/rest, environment and activity scheduling

• Explains to all staff and family members the importance of introducing yourself, explaining what you are doing and providing reassurance to the patient

DOC Management Plan

MDT Education Package / Guidelines

• Attendance at a standardised staff inservice

• Standardised MDT guidelines to ensure consistent care and service delivery to all patients with DOC & their families

• MDT Management guidelines address education, assessment, sensory stimulation & DOC Management plans and family meetings

MDT Management Guidelines

Implementation Phase• What was implemented?The above resources and training packages were implemented to ensure best practice with this population and their families.

• Where was it implemented?On the Neurosciences Ward (2C) at the PAH.

• Who was involved?The MDT (Allied Health & Nursing) & the family members of patients with DOC are the participants

• When was it done?Commenced July 2018 – 12 months data collection

• How was it done?Data collection: Pre- & Post- surveys to staff & family members regarding staff & family education package

Implementation Phase• Major barriers:- Resistance to change Implementation of a new education &

management package in an established clinical area.

- Nursing Staff & Allied Health Staff varying levels of experience.

- Time pressures on staff on busy ward

• Innovative strategies:- Partnering with staff on the ward & providing education regarding the

evidence-based benefits of these resources.

- Rainbow Scholarship site visit to Caulfield ABI Unit to learn from their previous experiences when implementing the package.

• Plan for regular monitoring and evaluation:- Regular (monthly) meetings with the Research team and meetings Allied Health staff & Nursing staff on the ward

Analysis

• Descriptive statistics (means, frequency % and standard deviation) will be utilised to analyse the data collected from the pre and post implementation surveys.

• Consolidated Framework for Implementation Research (CFIR www.cfirguide.org; Damschroder et al., 2009) optimise translation into our clinical setting identifying the key domains relevant to our context. – prospective examination of the 5 CFIR domains (intervention, outer

setting, inner setting, characteristics of individuals, and process)

Outcomes• Impact- Standardised and consistent approach to DOC patient management and education

to families, achieving best-practice care and a subsequent reduction in family concerns about their loved ones treatment

- Encourages participation of family members in the patient’s rehabilitation

• Benefits (patient related, cost, other):- Expected benefits data regarding the previously unmet need of early education

to family members regarding DOC and sensory stimulation and a standardised staff education package / MDT management plan for patients with DOC in the acute setting.

- Possible positive effects on patients with DOC via family members’ delivering environmental stimuli literature suggests that processing of emotional information is prioritised in cognitive system (Abbate, et al,. 2014).

- Assist with the transition through the spectrum of care from acute to

rehabilitation.

Outcomes• Sustainability:

- Aim to evaluate the impact of the project on the 2C MDT management and on family members’ perceived education and experience.

- Result = support the ongoing implementation of this resource on 2C & the roll out of this project to further wards across the hospital.

• Where to from here?

- Broader translation aim to roll to other wards in the hospital with patients with DOC post severe ABI; i.e.: ICU, general surgical wards, orthopaedics, infectious diseases, cardiac wards (hypoxic brain injuries) and BIRU (Brain Injury Rehabilitation Unit)

Conclusions

• Commenced data collection July 2018

• Yet to draw conclusions from the data

• Trialled the resources with previous patients and their families prior positive feedback from families regarding education they received from the MDT & the sensory stimulation and DOC management plan.

References• Abbate, C., Trimarchi, P., Basile, I., Mazzuchi, A., & Devalle., G. (2014). Sensory stimulation for patietns with disorders of consciousness:

from stimulation to rehabilitation. Frontiers in Human Neurosciences, 8(616), 1-5.

• Abbasi, M., Mohammadi, E., Sheaykh Rezayi., A. (2009). Effect of a regular family visiting program as an effective auditory, and tactile stimulation on the consciousness level of comatose patients with a head injury. Japan Journal of Nursing Science, 6, 21-26.

• Damschroder, L. J., Aron, D. C., Keith, R. E., Kirsh, S. R., Alexander, J. A., & Lowery, J. C. (2009). Fostering implementation of health services research findings into practice: a consolidated framework for addressing implementation science. Implementation Science, 4:50, 1-15.

• Faugeras, F., Rohaut, B., Valente, M., Sitt, J., Demeret, S., Bolgert, F., Weiss, N., Grinea, A., Marois, C., Quirins, M., Demertzi, A., Raimondo, F., Galanaud, D., Habert, M., Engemann, D., Puybasset, L., & Naccache, L. (2017). Survival and consciousness recovery are better in the minimally conscious state than in the vegetative state. Brain Injury, 1-6.

• Lombardi, F., Taricco., M., De Tanti, A., Telaro, E., & Liberati., A. (2009). Sensory stimulation for brain injured individuals in coma or vegetative state (review). The Cochrane Collaboration: John Wiley & Sons, Ltd.

• Padilla, R., & Domina, A. (2016). Effectiveness of sensory stimulation to improve arousal and alertness of people in a coma or persistent vegetative state after traumatic brain injury: A systematic review. The American Journal of Occupational Therapy, 70(3), 1-8.

• Royal College of Physicians Guidelines (2013). Defining criteria and terminology. Prolonged Disorders of Consciousness: national guidelines, 1-13.

• Royal College of Physicians Guidelines (2013). Summary of literature on prognosis for recovery. Prolonged Disorders of Consciousness: national guidelines, 1-5.

• Seeto, T., Kuys, S., Budden, C., Griffin, E., Kajewski, H., McPhail, S. (2013). Feasibility of an interdisciplinary early intervention for patients with low levels of responsiveness following an Acquired Brain Injury. Brain Impairment, 14(2), 213-221.

• Tennant, A., & Gill-Thwaites. (2017). A study of the internal construct and predicative validity of the SMART assessment and emergence from vegetative state. Brain Injury, 31:2, 185-192.

• Yelden, K., Sargent, S., & Samanta, J, (2017). Understanding the decision-making environment for people in minimally conscious state. Neuropsychology Rehabilitation, 1-12.

• Pignat, J. M., Mauron, E., Jöhr, J., Gilart de Keranflec'h, C., Van De Ville, D., Giulia Preti, M., Meskaldji, D. E., Hömberg, V., Laureys, S., Draganski, B., Frackowiak, R., Diserens, K. (2016). Outcome prediction of consciousness disorders in the acute stage based on a complementary motor behavioural tool. PLOS ONE, 1-16.