Book Review: Life Quality Outcomes in Children and Young People with Neurological and Developmental Conditions: Concepts, Evidence, and Practice Clinics in Developmental Medicine Edited by GabrielM Ronen, PeterL RosenbaumLondon: Mac Keith Press, 2013 £95.00 (Hardback), pp 391. ISBN: 978‐1‐908316‐58‐5

This book brings together recent developments in thinking about the lives of children and young people with neurodevelopmental conditions. The editors' introductory chapter is instructive and sets out well the objectives for the book. The book has three main sections: Concepts and Perspectives, Methods and Measurement, and Opportunities for Intervention, each split into a number of chapters. The authors are largely from Ontario or have worked with Ontario groups. Much is about development of Canadian Policy, but no less relevant for that. The twenty-seven chapters have different authors and the style and quality is maintained in each chapter. However, it is inevitable in a multi-author book that there is not always a natural flow – each author writes about what they know best. Researchers need to take a theoretical position, define concepts, and follow through their research plan if their effort is to be worthwhile. However, those necessary constraints may restrict understanding; therefore a researcher must at times stand back, reflect on other approaches and listen to other ideas. Lucyna Lach's chapter (‘The Family Does Matter!’) was useful for this reason. She argues that families are complex, data only capture certain things, epidemiology rarely provides definitive answers, and statistics may mislead. Understanding of child disability and methodologies has improved over the last 15 years; but remains only partial understanding. I expect that even the concept of Participation, which has been so helpful over the last decade, will need to be revisited when we are ready for a successor to the International Classification of Functioning, Disability and Health. There is a tension in the book which is identified by Veronica Smith and Kim Schonert-Reichl in their chapter, ‘Contextural Facilitators: Resilience, Sense of Coherence, and Hope’. On the one hand, the book adopts a strength-based, positive approach. On the other, the results of research may impose demands on parents and produce anxieties for them. Parenting styles have been found to be important, exercise programmes may be especially helpful, and many disabled children need more promotion of their development by parents than typically developing children. Such increased understanding can place more expectations on the families of a disabled children than on other families. Smith and Schonert-Reichl write, ‘… we find that the most recent decade of research has been dominated by studies exploring the causes of the negative impacts … These explanations include poorly met informational needs, negative responses from others regarding diagnoses, associations of increased stress with demanding intervention programmes, and a decreased sense of parenting competence … Missing in these investigations is the notion that impairment, although present, may not be limiting, may only partially impair interaction, or may be transformative in one or more life domain.’ My one concern about the book is the lack of the voice of disabled people. The importance of this voice is emphasized and there is a chapter on ‘The Role of Parent and Community Organisations in Child Health Promotion’; but nothing is written by disabled children and young people. Most, if not all of the chapters are likely to have been written by able-bodied people. The editors are right to avoid tokenism, but the erudition and insight of ‘Life Quality Outcomes’ seems to reinforce this disparity. This is a dilemma not a criticism. Who would most benefit from reading the book? Probably someone who is reasonably experienced in the field, who wants to broaden their understanding, and have some pre-conceptions challenged. As justification for buying the book, I cannot better John McLaughlin who wrote the Foreword: ‘Failure to recognize the distinction between causes of disability and the consequences has impeded both research and public understanding. The authors do a great service by illuminating the confusing literature that has evolved regarding the related but distinct concepts of health status, health-related quality of life, and a personal view of quality of life. Intuitive thinking and knee jerk assumptions about quality of life are particularly vexing when applied to developmental disabilities. Healthcare professionals consistently overestimate the perceived “burden” of impaired health status and tend to conflate health status with quality of life. Even parents and family members may make erroneous negative assumptions.’

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