ACQ Vol 10 No 2 2008

B ook R eviews

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.

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. 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. Deborah Hersh

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