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Swinburn, K., Parr, S., & Pound, C. (2007).
Including
people with communication disability in stroke
research and consultation: a guide for researchers
and service providers
. London: Connect Press
(located at: 16–18 Marshalsea Road, London); ISBN
978 0 953 6042 8 9; spiral bound, 107 pages; £20.00.
Deborah Hersh
This guide in the Connect Ideas Series is very clearly written
and contains practical ideas and suggestions for involving
people with aphasia, and indeed, for people with communi
cation disability more broadly, in research and consultation.
In chapter 1, the authors point out that user involvement in
stroke research is becoming a
requirement
of research policy,
funding and ethics approval, and not simply an optional
extra. They encourage this involvement, not only in relation
to giving information, but also in terms of people with
communication disability acting as advisors, consultants,
steering group members and co-researchers. Chapter
2 explains the different causes and characteristics of
communication disability. It draws on Aura Kagan’s
work at the Aphasia Institute in Toronto by dividing
communication into getting messages in and
messages out and offers suggestions about how to
promote supported conversation. Although such
support is time consuming, the authors argue that,
with clear preparation, researchers can access the 30%
of communication impaired people post-stroke who
would otherwise be excluded from studies. Chapter 3
considers recruitment and sampling, making
information accessible, consent procedures, and
administration. It illustrates each point by offering
artefacts in the appendix, examples from a range of
previous research projects which have used adapted
materials to be accessible to people with aphasia.
These artefacts are very useful indeed, for example,
in demonstrating the clarity of a well-produced information
sheet or in showing the contrast between a standard and
adapted consent form. Chapter 4 gives information for
successful interviewing with a person with aphasia, including
tips about how to deal with the more common difficulties
such as communication breakdown, moving away from the
topic or being spoken for by a relative. Chapter 5 discusses, in
very practical terms, how to arrange, facilitate and minute
successful meetings and focus groups. In chapter 6, the
authors consider how research findings can be disseminated
and evaluated in an accessible way. Not only is this important
for those who have participated, but it also forces researchers
to be very clear about their findings. The final chapter
contains summaries of research projects associated with
Connect which have involved people with aphasia. It also
lists a few useful contacts and a bibliography.
This guide is written to be useful to researchers and service
providers who have no speech pathology background, but I
would equally recommend it to speech pathologists and students
doing research and consultancy with people with aphasia and
communication disability. It encourages reflection and is full
of good ideas based on years of experience of many people
involved with Connect. This guide should help people with
communication disability share their experiences and
suggestions, and ultimately should encourage more inclusive
and rich research and consultation.
Connect – the communication disability network.
(2007).
Having a stroke, being a parent
. London:
Connect Press (located at: 16–18 Marshalsea Road,
London); ISBN 978 1 906315 01 6; spiral bound, 48
pages; £9.00.
Deborah Hersh
This guide is part of the Connect Ideas Series and results from
a collaboration between Connect – the communication
disability network (a UK charity working collaboratively with
people with aphasia to address the issues they face) and the
Stroke Modernisation Initiative based in Lambeth and South
wark in London. It was funded by the Guy’s and St Thomas’
Charity. The guide is for parents who have aphasia following
stroke, as well as for their families, and it includes a DVD
containing six personal accounts of coping with parenting
with aphasia. My overall impression from reading this guide
and watching the DVD is how useful, practical and positive it
is. The accounts are very moving and sensitively
produced. They show how, in addition to coping with
the life-changing impact of aphasia and stroke,
parents have to find ways to continue parenting,
maintaining relationships with their children, sup
porting their development and being actively in
volved in their lives.
The guide is clearly presented, with key words
emboldened, pictures and bullet points. It is full of
quotes, advice and tips from parents with aphasia.
The guide has six chapters, preceded by a reminder
section of the different stages of childhood and what
parents have to deal with at each stage from babies to
teenagers. The first chapter is about the acute, hospital
period and looks at how best to reassure and explain
what has happened to children, how to make them
feel comfortable with hospital visits, the importance
of enlisting help, keeping routines going and coping
with the “realisation that their Mum or Dad is not
invincible” (p. 16). Chapter 2 is about feelings and attitudes
on coming home. It focuses on sadness, anger, fear, guilt and
embarrassment reported not only by those with the aphasia
but by partners and children. Some quotes are very powerful,
like that of the children who kept checking if their Mum was
all right because of their fear that she would have another
stroke, or the guilt from the parent with aphasia that the
children had missed out on their childhood and been forced
to “grow up too quickly” (p. 24). Chapter 3 addresses changes
in roles and relationships, for example, in family dynamics, in
maintaining involvement in children’s routines, and in coping
with discipline issues. Chapter 4 is full of practical ideas for
coping at home and getting support, including asking for
help, getting organised, and communicating with the child’s
school. Chapter 5 is a summary of the positive changes
reported by parents following stroke and aphasia. They
included a better work–life balance, spending more time with
the children, and noticing their children becoming more
independent and considerate. The final chapter contains
relevant contact information for (mainly UK) agencies and
websites, and lists a few useful books for families on aphasia,
stroke and caring. This is a great example of collaboration and
of learning from the experiences of people generous enough
to share their stories and advice. I would recommend it highly
as a resource that should be made available, not only to
parents with aphasia, but also their partners and children.
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