an aac bereavement resource a ‘whole organisation’ approach to communicating and supporting...
TRANSCRIPT
An AAC Bereavement ResourceA ‘whole organisation’ approach to communicating and
supporting individuals with LD to deal with initial bereavement
Val Sardella (SLT assistant)Caroline Hodgson (SLT assistant)
Leonie van Wijk (SLT)
26 September 2011
Communication Matters conference
COMMUNICATION MATTERS…
- Dame Hannah Rogers Trust (DHRT)- What happened?- Reflection- Working party- Research- Dissertation- Bereavement pack
Overview
Dame Hannah Rogers Trust(DHRT)
Dame Hannah Rogers Trust
- School year 2009/2010:series of six deaths
- Major impact on whole Trust
- Forced to face up to reality
- Reflection on existing practices
What happened?
- Do we tell the students / clients?- What do I say? What is appropriate?- How do I say this?- What do the parents want?- How will the client(s) respond?- Do I want to talk about this?
Questions
- Lack of understanding of the bereavement process - Comprehension levels of clients overestimated- Breaking news verbally- No policy in place- Curriculum - Opinion parents- Previous experiences
What became clear on reflection?
Multi-disciplinary working party :- Quality Assurance manager- 2 nurses- 1 teacher- SLT assistants & SLT student - Head of respite centre
Working party
The need for:- A revised bereavement policy - Coroner’s rules to be readily available- Rolling out in-house training to improve understanding of
the bereavement process- Offering bereavement support- Implementing changes to the curriculum- Developing an appropriate resource to break the initial
news
Outcomes working party
Is there a resource available on the market whichenables you to break the initial news of abereavement to someone with LD?
We couldn’t find one, so….
Bereavement Resource
…. we made one!
Concrete script with:- PCS Symbols- Makaton signs
Bereavement Resource
- What research is out there?
- Main question of dissertation:What is the role of a Speech & Language Therapist in a school like DHRT when a bereavement occurs? protocol
Dissertation
“Communication is the key to good health, successful ageing and good quality of life”
Research
Lubinsky & Higginbotham (1997) in Dark (2006):
Dark (2006):
Research
“A successful grieving process is dependent on having access to satisfactory communication ”
(Dark, 2006)
1. SLT’s enable people with disabilities to communicate effectively2. RCSLT : SLT supports and facilitates communication
“Over fifty per cent of people with learning
disabilities have significant communication impairment “
Research
Kerr et al (1996 in Read, 2005)
Clements (2004): “Many times, the person with LD is not told about a death
until well after the fact and may not be included in the funeral or other related activities.
This may result in a delayed and ineffective grieving process.”
Research
- saying goodbye to staff & friends- moving house- loss of privacy - loss of daily contact with family
Doka (1989) states: “cumulative losses may result in an atypical, prolonged or complex grieving process”
Multiple losses:
Research
Profound and Multiple Learning Disability
• No realization of death (and life for that matter)• Communication is limited and non-verbal• Understanding is based on sensual impressions and experiences• Development of bonding and basic security• Reactions to death of loved one visible only from an intellectual age of six months• Loss mainly causes a breach of fixed patterns• Reactions of mourning visible in behaviour only after some time has elapsed
(Meeusen-van de Kerkhof, 2006)
Severe Learning Disability
• Limited realization of death• Limited development of language• Imagination and reality tend to merge• Beginning of linking up events such as sickness and death• Possibility of sober primary reaction to death• Understanding of death linked to concrete experiences• Death is seen as something temporary• Realization of death is definite and starts to grow as deceased person is increasingly missed• Model behaviour of others has strong influence on experience of death
(Meeusen-van de Kerkhof, 2006)
Moderate Learning Disability• Limited realization of death• Basic capability of putting oneself in another person's place• Development of insight into specific structures, such as time and family• Stronger comprehension and more pronounced means of expressing
emotions in language• Growing sense of reality• Searching for logical explanations of death
• Growing comprehension of the irreversibility of death
(Meeusen-van de Kerkhof, 2006)
Mild Learning Disability
• Clear realization of death• Persons know how to define themselves by comparison
with others• Growing insight into specific structures (worldview)• Logical thought coupled to specific events• Empathy present, but experienced from own perspective• Realistic image of meaning of death• Realization of irreversibility of death• Think and talk about mystery of life and death
(Meeusen-van de Kerkhof, 2006)
Where are we now?
Bereavement Box:- Bereavement policy- Coroner’s rules- Bereavement resource
• Training included in induction• Cruse training
Where are we now?
Communication book page
Originally photo of communication book- pages of symbols.Thepage was created for and with, one of our students who had lost their mum.
Looking forward...
- Publish? Is there a need?
- Feedback from people like yourselves
- People to pilot for us Questionnaire
- Implement into curriculum
- Copyright
- But mainly the need to...
Use and share!
Literature• Clements, P.T., Focht-New, G., Faulkner, M.J. (2004), Grief in the shadows: Exploring
loss and bereavement in people with developmental disabilities, Issues in Mental Health Nursing, 25, 799-808.
• Dark, L., Balandin, S., (2006), Bridge over Troubled Waters – Grief, Disability and Complex Communication Needs, gepresenteerd op ISAAC conferentie te Dusseldorf
• Read, S., (2005), Loss, bereavement and learning disability: providing a continuum of support, Learning Disability Practice, 8(1), 31-37
• Dowling, S., Hubert, J., White, S. & Hollins, S. (2006), Bereaved adults with intellectual disabilities: a combined randomized controlled trial and qualitative study of two community-based interventions, Journal of Intellectual Disability Research, 50 (4), 277-287
• Meeusen-van de Kerkhof, R., Bommel, H. van, Wouw, W. van de, Maaskant, M. (2001), Can you fall out of heaven?, Utrecht: Landelijk Kennisnetwerk Gehandicaptenzorg
