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Thinking About Death and What It Means: Conversations with People with Intellectual Disabilities


Thinking About Death and What It Means: Conversations with People with Intellectual Disabilities Dr Sue Read, Reader in Learning Disability Nursing, – PowerPoint PPT presentation

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Title: Thinking About Death and What It Means: Conversations with People with Intellectual Disabilities

Thinking About Death and What It Means
Conversations with People with Intellectual
  • Dr Sue Read, Reader in Learning Disability
  • Keele University, Staffordshire, UK
  • Dr Stuart Todd, Senior Lecturer,
  • University of Glamorgan, Wales, UK,

  • People with intellectual disabilities will come
    to a dying phase of their lives, yet care
    professionals may be uncertain about how to talk
    (and support) people at such sensitive times.

  • Introduce and describe a funded piece of research
    that explores the understandings of adults with
    intellectual disabilities about
  • loss, death and dying.

  • Brief contextual backcloth around death and
    intellectual disability
  • Aims and objectives of the current study
  • Introduce methods used
  • Offer a taste of the results to give a flavour
    to the research
  • Introduce the outcomes of the research the
    DVD-Conversations about death and dying.

Defining Intellectual Disabilities
  • DH (2001) described people with learning
    disabilities as having a reduced ability to
    understand new or complex information, or to
    learn new skills (impaired intelligence) with a
    reduced ability to cope independently (impaired
    social functioning) which started before
    adulthood and with a lasting effect on

  • Clearly this definition describes individuals who
    may have a whole range of different presenting
    competencies in communication, social skills,
    social functioning and / or behaviour.
  • People with learning disability are amongst the
    most socially excluded and vulnerable groups in
    Britain today (Department of Health, 200114)

Importance of Loss
  • I thought that it sometimes seems as if all our
    lives we are trying to cope with loss either
    the fear of it, or the memory of it or its raw
    immediate presence.
  • Oswin (1991 15)

Listening to Previous Voices
  • Do experience grief (Oswin, 1990 2000 Hollins
    Esterhyuzen, 1997)
  • Impact of grief is varied and often complex
    (Conboy-Hill, 1992 Hollins Esterhyzen, 1997
    Sheldon, 1998 MacHale Carey, 2002)

Listening to Previous Voices
  • response to bereavement by adults is similar in
    type, though not in expression, to that of the
    general population (Bonell-Pascual et al, 1999).
  • Prone to multiple and successive losses (Oswin
    1991 Elliott, 2003)
  • Cultural differences in bereavement support

Listening to Previous Voices
  • Vulnerable from a death and dying perspective
  • Actively excluded from death and dying (Read
    Elliott, 2003)
  • More complex the needs, the less likely hood of
    being involved (Read Elliott, 2003)
  • People usually experience sudden as opposed to
    anticipatory grief (ONians, 1993)
  • Have an external locus of control (reliant on so
    many for so much).

Disenfranchised grief (Doka, 1989 2002) and
death (Read, 2006)
  • Sudden rather than anticipatory death (ONians,
  • The autonomy of the dying person is not
  • The pending death is not recognised or
  • The persons rights to know are overlooked
    (Read, 2006)
  • Reluctance among the health care communities to
    talk about death and dying (Todd, 2001).

The Research
  • Stuart Todd, Senior Lecturer, University of
    Glamorgan, Wales Sue Read, Reader in Learning
    Disability Nursing, Keele University,
    Staffordshire, UK.
  • Funded by Baily Thomas Charitable Fund, 18 months
    study (September 2006-March 2008).

Aims Objectives
  • Describe the encounters that people had
  • Examine the understandings held
  • Ascertain views about good deaths
  • Gain insight to support the ongoing development
    of research and practice interface
  • Produce an educational tool the DVD.

  • Eager to talk about death and dying (Read et al
    2001 Read Papakosta-Harvey, 2004).
  • Series of progressive focus groups in North
    Staffordshire Cardiff
  • Each group met three times
  • Each session had a primary focus
  • Celebratory meal after third and final session.

Primary Focus
  • Exploring loss and individual experiences.
  • Exploring understanding of dying.
  • Exploring perceptions of a good death.

  • Recruitment Pictorial information leaflets
  • Support system was available throughout the
  • Nature of the research
  • Nature of the population under study.
  • Consent form developed in pictorial format
  • Process consent (Beaver et al, 1999)
  • Ethical approval from LREC

Ethical Approval
  • Dying to talk about our good deaths The
    perspectives people with learning disabilities
    hold about death and dying.
  • Thinking about death and what it means The
    perspectives of people with learning

  • North Staffordshire (n6 n10) met three times
  • One group within a local Daycentre
  • (n6) 3 Males, 3 Females participants, one
    support person
  • One advocacy group
  • (n10) 6 Males, 4 Female participants, 2 support
  • (one person used an interpreter)
  • Cardiff (Caerphilly, n5 Bridgend, n6) met
    three times
  • People First
  • Supporters in each group

Preparing for the Research
  • Step One the Group-Advocacy Worker to work
    alongside the potential participants to explain
    what involvement in the research would mean for
    them, to support people to choose whether to take
    part in the research or not.
  • Step Two involved negotiating a mutually safe,
    comfortable and accessible venue.
  • Step Three to translate the written research
    questions into clear words and pictures, using
    large fonts, coloured pens, drawings and

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Facilitating the Research
  • One primary facilitator (the researcher), one
    supporter/graphic facilitator (group-advocacy
    worker), one supporter/British Sign Language
    interpreter facilitated the three focus groups.
  • Establishing a set of ground rules including
    starting and finishing times ways of working
    together listening talking and
  • Took photographs throughout the sessions.
  • All the comments from participants were written
    up onto the flipcharts for clarity and to promote
    memory recall and credibility checking.

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Facilitating the Research
  • Optional home work (e.g. bringing in
    photographs associated with loss) was given for
    people to do between the three sessions to
    promote personal involvement and continuity
    between the sessions.
  • Some participants took this further in the
    following sessions and brought music cds to be
    shared with the group that reminded them of
    friends who had died.
  • During the third session the researcher was asked
    to provide photographs for clarification of
    particular processes, including differentiating
    between cremation and burial and cultural
    differences around funeral rites and rituals.

Following on from the Research
  • All flipcharts were photographed for the research
    and the originals were left with the group.

Following on from the Research
  • Prior arrangements had been made with support
    staff at the day service to help participants to
    use these to reflect back on their achievements
    and to serve as a reminder / prompt for the next
    focus session.
  • Although support systems were costed into the
    research, no-one took this option.

Findings Talking about death and dying
  • Eager to talk how death had shaped their lives.
  • There appeared to be no awkwardness for people to
    talk about these issues.

Its easier to talk about your own death. Its
harder to talk about other people though!
It hasnt been frightening talking about it
Findings Worrying
Worry about forgetting people youve lost
  • Worrying themselves.
  • Worrying about other people.
  • Worry about dying.

I worry about being upsetI worry about my
Nanabout Nan getting upset
Findings Impact
  • Struck by the number of loss and death
    experiences encountered fundamental feature of
    everyday life.
  • Normality of loss and grief.
  • Importance of pets animals play a huge part in
    many peoples lives.

Not talking about it isnt going to make it go
Findings Realities
  • Not afraid to contemplate their own death.
  • Support staff were surprised at the extent which
    death had coloured and touched the lives of
    people they knew well.

Id feel sad for my boyfriend and I dont know
how my dad will be!
and she never had a boyfriend because she had a
learning disability
Findings Understanding dying
Some doctors might keep it from you. Id be angry
if that was me! It would be terrible.
  • Hidden face of dying less contact with dying
  • Wanting to be informed.

I was at the day centre when she died. I didn't
find out til a few hours later.
I wouldve wanted to have been there.
Findings What helps
Having friends around us.
  • Talking about it.
  • Sharing it.
  • Reconnecting (music, line dancing)

Sharing grief between family members
Music as a reminder of peoplea way to hold onto
Going back to line dancingbeing able to share
his memory with others
Hidden Messages
  • By involving people in research suggests that
    those participants have a contribution to make.
  • It implies that participant contributions will be
    useful and meaningful.
  • Simply by providing the time and creating the
    space suggest that the work is worth doing.

Hidden Messages
  • Such messages also affirm how much we, as
    researchers, value the time, experiences and
    contributions that participants have to offer.
  • Everyone has a story to tell (Jennings, 2005)
    and people with intellectual disabilities often
    have simple, yet incredibly powerful tales.

The Outcome of the Research
  • Read, S. Corocran, P. (2009). Research A
    vehicle for listening and promoting meaningful
    consultation with people with an intellectual
    disability. The British Psychological Society
    Qualitative Methods in Psychology Section, 8

The Outcome of the Research
  • Todd, S. Read, S. (in press) Perspectives on
    death and dying. International Journal of Child
    Health Hum Dev 3(2)....

The Outcome of the Research
  • Conversations
  • About Death
  • and What it Means
  • (2009)

To conclude
  • Loss is an important feature of everyones lives,
    including people with intellectual disabilities.
  • Marginalised groups often experience
    disenfranchised grief and disenfranchised death.
  • People have important thoughts and ideas to share
    with professionals, we simply need to establish
    the mechanisms to listen effectively.

To conclude
  • People with intellectual disabilities have
    incredibly powerful stories to tell, we just need
    to ask them and actively listen.
  • Focus groups are useful way of promoting
    meaningful consultation with people with an
    intellectual disability (Read Corcoran, 2009).
  • This research will provide valuable insight into
    the world and ideas of people with intellectual


You have got to know what I want because it will
be down to you to see that it happens.
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