PARTICIPATORY RESEARCH IN PALLIATIVE CARE.
Actions and Reflections
Jo Hockley, Katherine Froggatt and Katharina Heimerl (eds)
Oxford University Press, 2013
RRP £32.99, $US55.00
This book is to promote participatory research—a practically focused, rigorous approach to addressing core issues of concern to practitioners and recipients of care—as an appropriate research methodology within the field of palliative care. Participatory research, also known as critical action research, appreciative enquiry, and systemic action research, is not defined but we are told it has three core values. These are collaboration in the research process in order to empower people, practitioners, and researchers (participation); to bring about change for people, organizations, and systems (action); and to generate knowledge through collective reflective processes (reflection). Participatory research is said to be hard work and particularly challenging for those whose research has been focused within the traditional quantitative and qualitative paradigms. People who undertake participatory research “want to make a difference through their research, to bring about change”; I wondered what non-participatory researchers were aiming for.
The book is divided into three sections. The first, Groundings, looks at the different theoretical frameworks of participatory research, each chapter illustrated with examples from actual participatory research. A desire for social justice seemed to be a recurring motivational theme. The second section describes exemplars of action research in palliative care – from improving bereavement support for people with intellectual disability in England, to improving pain management in Canadian long-term care facilities. The final section deals with issues in participatory research, including power, community, gender, as well as the rigor and quality of the research itself. I am inadequately grounded in the theoretical and philosophical underpinning of research methodology to pass judgment on participatory research. If you work in palliative care and you feel a need to do something to make things change, this book may help you get started.
COUNSELING CLIENTS NEAR THE END OF LIFE
A Practical Guide for Mental Health Professionals
James L. Werth (Ed)
Springer Publishing Company, 2013
RRP $US50.00; £27.00
This book is a description of and a guide to counseling patients who are terminally ill and their families. It is divided into three sections—End-of-Life Service Provision, Working with Clients who are Dying, and Assisting Loved Ones. The first section deals with ethical challenges, the use of advance directives and diversity related to age, race or culture. The second includes chapters on mental health symptom management and cognitive impairment. The last section is about the management of grief and bereavement. I thought the text was very practical but I would have liked to see a lot more lists. I think this book will provide a sound grounding in end-of-life care for psychology and counseling students and may also be of interest to those involved in social work and pastoral care.
THE END OF YOUR LIFE BOOK CLUB
Hodder Export, 2012
RRP $US25.00, £12.99
Will Schwalbe brings us a very personal account of his mother's terminal illness with pancreatic cancer, during which time they were brought together by reading, the mother-son book club. They are both bookaholics, although I note she only reads books after reading the ending first. Mother is a dynamo with a zillion causes that she supports and works for, from the Women's Commission to establishing a library in Afghanistan; very admirable, but I was not always sympathetic to some of her social and political views. And should middle-aged children have to first clear any airline bookings with their mother? I welcomed the celebration of reading and all that it means to us. The range of books under discussion is wide, but it included books that I had found impossible to finish in the past and some whose stories or themes will probably prevent me reading them in the future. I would have liked to hear more about the meaning of literature and less about mother's personality (admirable woman though she must have been). Having been a most attentive career, the distress at missing the moment of his mother's death because he had gone across town to have a shower—sorry, I could have done without it. Other reviews told me the book was funny—sorry, I missed that. This is an intensely personal story, as reading is a personal matter, and I think whether or not you enjoy it will be personal.
A Memoir of my Mother's Dementia. With Refreshments.
Riverhead Books, 2012
RRP $US26.95, £16.80
I thought this book would provide information and insight useful to others caring for a dementing parent. But I don't think it does. It's more about the author's history than the mother's dementia. A food writer for the New York Times Magazine, Witchell tries to hang onto her mother's spirit by cooking the comforting foods her mother made for her as a child. I am no judge of recipes, but those given sounded fairly ordinary to me. I enjoyed the occasional colorful description of individual eccentricities in some of the members of the wider family, but I did not enjoy hearing about her father. He didn't speak to her for two years, although we were not really told why. And I did not enjoy reading about a father who punched his seventh-grade daughter in the face because she threw her hands in the air out of exasperation with a homework problem, and then required her to apologize to him when her nose finally stopped bleeding. I think I got to the point where I didn't want to know.
Roger Woodruff, MD (Australia)
June 2013 Dr. Woodruff is a Lifetime Member of the IAHPC Board and Past Chair. His bio may be found here.
Note for authors and publishers: If you wish to have your book reviewed, please send to:
Dr Roger Woodruff
IAHPC Bookshop Editor
210 Burgundy St, Suite 9
Heidelberg, Victoria 3084
Note: Review copies become property of IAHPC and are not returned to the author. Only palliative care related books which are previously approved will be reviewed. Due to the large number of requests, we can't provide exact dates of when books will be reviewed.