Macmillan Cancer Improvement Partnership in Manchester (MCIP)
A directory of information materials for people with cancer 2000/2001. Macmillan Cancer Relief...
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A Directory of Information Materials for People with Cancer 2000/2001. MacMillan Cancer Relief Centre for Health Information Quality. MacMillan, New York. This directory is avail- able at www.hfht.org/chiq/macmillan/ This is the second edition of a directory of information resources published as part of Mac- millan Cancer Relief’s continuing commitment to providing good quality, comprehensive and ap- propriate information and support for patients with cancer. They worked in partnership with the Centre for Health Information Quality to provide a source of reference to a selection of patient information documents. They have based this selection on materials published in the United Kingdom in the last 5 years, intended for national distribution and marked with the date of publica- tion. The list includes only publications meeting the requirements of two quality appraisal tools, DISCERN and Flesch which focus on needs of the users and readability, respectively. They list leaflets and booklets and, separately at the end of the book, books and videos. Publications are listed in alphabetical order, if appropriate, sub-divided into sections such as diagnosis and screening, and treatment (breast cancer). There is in addition a useful index for looking for information on specific subjects. Each booklet is numbered with its title and a brief explanation of the content. Full details are given of how to obtain the booklet and, where appropriate, Flesch readability scores are given with comments about any shortcomings. This publication contributes well to Macmillan’s aim of promoting a structured evidence-based approach to developing quality information for people affected by cancer and will be an essential part of every oncology department in the UK. It should also be a very valuable resource for those who are needing to plan how to meet information needs for informed consent as well as providing ongoing support for patients during and after treatment. Ann Barrett Present address School of Medicine, Health Policy and Practice, University of East Anglia, Norwich NR4 7TJ, UK DOI: 10.1002/pon.664 Hospice Care for Children (Second Edition). Edited by Ann Armstrong Dailey and Sarah Zarbock. Oxford University Press, Oxford, 2001. $45.00. 416pp. ISBN: 0195133307. ‘This book is meant to be read, underlined, reread and used.’ It is proposed in the Introduction that this book be used as a working manual for all those caring for children and families experiencing life threatening or terminal illness. The book achieves this goal admirably. Its potential audience is extremely diverse, being of value in parts to anyone involved in the care terminally ill or bereaved children: physicians, nurses, psycholo- gists, social workers, clergy, ethicists, teachers, volunteers and administrators, even the lay-public. There is a paucity of good material in this field at the current time that is presented in such a comprehensive manner. Although specifically a textbook for those focused in pediatric palliative care, there are many principles discussed in the book that would be of value to those who care exclusively for adults, in particular the geriatric population. The palliative care movement rose out of a need to recognize and relieve human suffering. Mother Teresa is quoted to have said ‘the greatest pain on earth is not the pain of hunger or poverty but rather the pain of isolation, abandonment and feeling unloved.’ Several personal testimonies are told in this text of experiences where a child was abandoned at the end of their life. Contributors explain how uncomfortable we all feel and ill- equipped to confront the particular suffering of a child and so may avoid it: ‘Dying is, by and large, something adults do.’ ‘To work in pediatric hospice is sometimes to have the courage to enter into the experience of helplessness and to face our limitations. We are sometimes not able to cure...we are sometimes not even able to bring comfort to those for whom we care. We are not saviors. We are only fellow human beings on a journey that we do not fully understand.’ This text aims to provide us with building blocks to develop Copyright # 2003 John Wiley & Sons, Ltd. Psycho-Oncology 12: 198–202 (2003) BOOK REVIEWS 199
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Transcript of A directory of information materials for people with cancer 2000/2001. Macmillan Cancer Relief...
A Directory of Information Materials for Peoplewith Cancer 2000/2001. MacMillan CancerRelief Centre for Health Information Quality.MacMillan, New York. This directory is avail-able at www.hfht.org/chiq/macmillan/
This is the second edition of a directory ofinformation resources published as part of Mac-millan Cancer Relief’s continuing commitment toproviding good quality, comprehensive and ap-propriate information and support for patientswith cancer. They worked in partnership with theCentre for Health Information Quality to providea source of reference to a selection of patientinformation documents. They have based thisselection on materials published in the UnitedKingdom in the last 5 years, intended for nationaldistribution and marked with the date of publica-tion. The list includes only publications meetingthe requirements of two quality appraisal tools,DISCERN and Flesch which focus on needs of theusers and readability, respectively. They list leafletsand booklets and, separately at the end of thebook, books and videos. Publications are listed inalphabetical order, if appropriate, sub-divided intosections such as diagnosis and screening, and
treatment (breast cancer). There is in addition auseful index for looking for information onspecific subjects. Each booklet is numbered withits title and a brief explanation of the content. Fulldetails are given of how to obtain the booklet and,where appropriate, Flesch readability scores aregiven with comments about any shortcomings.
This publication contributes well to Macmillan’saim of promoting a structured evidence-basedapproach to developing quality information forpeople affected by cancer and will be an essentialpart of every oncology department in the UK. Itshould also be a very valuable resource for thosewho are needing to plan how to meet informationneeds for informed consent as well as providingongoing support for patients during and aftertreatment.
Ann BarrettPresent address
School of Medicine,Health Policy and Practice,University of East Anglia,
Norwich NR4 7TJ, UKDOI: 10.1002/pon.664
Hospice Care for Children (Second Edition).Edited by Ann Armstrong Dailey and SarahZarbock. Oxford University Press, Oxford, 2001.$45.00. 416pp. ISBN: 0195133307.
‘This book is meant to be read, underlined, rereadand used.’ It is proposed in the Introduction thatthis book be used as a working manual for allthose caring for children and families experiencinglife threatening or terminal illness. The bookachieves this goal admirably. Its potential audienceis extremely diverse, being of value in parts toanyone involved in the care terminally ill orbereaved children: physicians, nurses, psycholo-gists, social workers, clergy, ethicists, teachers,volunteers and administrators, even the lay-public.There is a paucity of good material in this field atthe current time that is presented in such acomprehensive manner. Although specifically atextbook for those focused in pediatric palliativecare, there are many principles discussed in thebook that would be of value to those who care
exclusively for adults, in particular the geriatricpopulation.
The palliative care movement rose out of a needto recognize and relieve human suffering. MotherTeresa is quoted to have said ‘the greatest pain onearth is not the pain of hunger or poverty butrather the pain of isolation, abandonment andfeeling unloved.’ Several personal testimonies aretold in this text of experiences where a child wasabandoned at the end of their life. Contributorsexplain how uncomfortable we all feel and ill-equipped to confront the particular suffering of achild and so may avoid it: ‘Dying is, by and large,something adults do.’ ‘To work in pediatrichospice is sometimes to have the courage to enterinto the experience of helplessness and to faceour limitations. We are sometimes not able tocure. . .we are sometimes not even able to bringcomfort to those for whom we care. We are notsaviors. We are only fellow human beings on ajourney that we do not fully understand.’ This textaims to provide us with building blocks to develop
Copyright # 2003 John Wiley & Sons, Ltd. Psycho-Oncology 12: 198–202 (2003)
BOOK REVIEWS 199
