Creative insight into the carer's role

August 14, 2007

Janene Carey is preparing to use her own and others' experiences of looking after a loved one with a terminal illness to write a book that will be a supportive resource for family carers.

"I got involved in home-based palliative care when my mother was bedridden with breast cancer," Ms Carey said. Now a postgraduate student in creative writing at the University of New England, she wants to capture on paper "the joys, drudgery, special moments, and emotional highs and lows" involved in caring for someone with an incurable, life-threatening disease.

"Like most people in this kind of situation, I was completely unprepared for the overwhelming physical, emotional and psychological challenges of taking on the carer's role," she said. She thinks that the book resulting from her PhD research will help others facing the same challenges.

"Although there is an increasing trend in our society for care giving to take place at home," she said, "caring for a dying person is still a subject that is little discussed and almost taboo." As well as forming a resource for caregivers, she explained, her book – to be titled A Hospital Bed at Home – would increase community understanding and empathy about family carers, and be useful for health professionals and policy makers too.

Ms Carey (pictured here) will ask participants in her research project to record their thoughts and feelings about their daily life as a carer, and to talk to her about what they have written. "To cover the spectrum of care experiences," she said, "I would like to recruit a broad range of participants from around New England and Newcastle: men and women, younger and older carers, and people living in towns and in rural and remote areas. I am looking for people over 18 years of age who are the primary caregiver of a person living at home who is registered for palliative care services." Potential participants can contact her on (02) 6775 1913 (e-mail: janene@une.edu.au; post: 5 Highlands Road, Armidale 2350).

"The information that people give me, plus reflections on my own experiences as a carer, will form the basis for the true stories in A Hospital Bed at Home," she said. "It will be a work of 'creative nonfiction', using devices like scene-setting, characterisation, dialogue, and figurative language to bring the research findings to life."

Posted by Jim Scanlan at August 14, 2007 10:28 AM