1	Carers’ Needs 3^rd Renal Replacement Therapies Conference November 4, 2006 Sydney. Dr David Cairns Department of Psychology Macquarie University (and)
2	Lindfield Dialysis
3	Statistics on Australian Carers About 2.6 million Australians now care for a family member of friend. They save the economy about 30.5 billion dollars. 500,000 are primary carers. 54% of carers are women and 71% of primary carers are women. www.carersaustralia.com.au www.kidney.org.au
4	Renal Carers Much more research on patients than carers. Carers allow patients to have the flexibility of dialysing at home. Carers save health care system money. Most carers are family members (66% female spouse). Responsibility of caring can be overlooked and overwhelming as well as rewarding. Overall stress can be (and often is) higher for carers than patients.
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6	Plan of Talk Discuss some Australian research to answer the questions: Are carers distressed? What tasks to (haemodialysis) patients/carers do? As a group, how do carers feel about these tasks? What are carer’s main concerns (public and private)? What advice do experienced carers give to new carers? Messages.
7	Research 1 Author: Alison Blogg, Denise O’Shaughnessy & David Cairns. Date: 1999 & 2002 Title: Understanding carers’ distress in home haemodialysis. Method: Self-report surveys for carers. Results: (a) survey of 64 carers (b) survey of 58 carers. Reference: Published and unpublished.
8	Carer Distress: Personal Distress
9	Carer Distress: Life Upsets
10	Carer Distress: Negative Feelings
11	Plan of Talk Discuss some Australian research to answer the questions: Are carers distressed? What tasks to (haemodialysis) patients/carers do? As a group, how do carers feel about these tasks? What are carer’s main concerns (public and private)? What advice do experienced carers give to new carers? Messages.
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16	Plan of Talk Discuss some Australian research to answer the questions: Are carers distressed? What tasks to (haemodialysis) patients/carers do? As a group, how do carers feel about these tasks? What are carer’s main concerns (public and private)? What advice do experienced carers give to new carers? Messages.
17	"We asked the carers about..." We asked the carers about each of these 36 tasks: How much they did each task, How much they disliked each task, How willing they were to do each task, and How responsible they felt for each task.
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22	Plan of Talk Discuss some Australian research to answer the questions: Are carers distressed? What tasks to (haemodialysis) patients/carers do? As a group, how do carers feel about these tasks? What are carer’s main concerns (public and private)? What advice do experienced carers give to new carers? Messages.
23	Research 2 Author: Alison Blogg [SDC] Date: 1996 Title: The effects of being a carer of people on home haemodialysis. Method: In-depth interviews with 5 carers. Results: Four main themes emerged. Reference: Unpublished Masters Thesis.
24	Theme (1) Coming to terms with the machine. In the beginning anxiety; fear of what to do if something went wrong; apprehension about learning what to do; uncertainty of machine breakdown; with acceptance after some weeks. Carers expressed grave doubts about needle insertion. .
25	Theme (2) Fear that something may happen to the patient. Became relaxed in relation to operating machine but never lost fear for safety and well being of patient during dialysis – can’t switch off during hours of dialysis. Fear of heart attacks and patient becoming unconscious whilst on dialysis.
26	Theme (3) Poor health of patient increases Carer distress. Patients in good health impacted much less on the lives of the carers. Patients not in good health had a much greater impact on the carer (especially if there were children as well). Carers of patients in poor health often had to give up work (adding to financial stress).
27	Theme (4) Social impact on the carer. Limitations such as reduced holidays; time available for social activities; added responsibilities; loss of friends not coming to terms; some level of discomfort at having a dialysis machine in the house, including space needed for supplies. Patient and Carer both retired reduces impact and distress.
28	Plan of Talk Discuss some Australian research to answer the questions: Are carers distressed? What tasks to (haemodialysis) patients/carers do? As a group, how do carers feel about these tasks? What are carer’s main concerns (public and private)? What advice do experienced carers give to new carers? Messages.
29	Research 3 Author: Ilana Hart [RSW Sydney Hospital] Date: 1980 Title: Study of psycho-social aspects of home haemodialysis. Method: 30 home visit interviews. Results: Many “honest/private” findings. Reference: Published by Sydney Hospital.
30	Selected “Private” Findings Very few patients dialysed at the convenience of the carer leading to carer fatigue. Patients continually made requests on carers. Patients were not sensitive to carers problems. Although patient and carer are trained in specific tasks, on arrival home, dialysis fits in with pre-existing roles and dynamics. 27/30 partners would have liked a “routine” formal break from home dialysis
31	Selected “Private” Findings Nearly all partners felt “guilty”, “shame” and “failure” if the patient was transferred back to a satellite/hospital unit. Nearly all patients in the study were reported to become more “self-centred” over a period of time – “survivor mode”. Many partners feel cut-off/left out from doctors information/meetings – patient gets the attention while carer does all the work.
32	Plan of Talk Discuss some Australian research to answer the questions: Are carers distressed? What tasks to (haemodialysis) patients/carers do? As a group, how do carers feel about these tasks? What are carer’s main concerns (public and private)? What advice do experienced carers give to new carers? Messages.
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38	Plan of Talk Discuss some Australian research to answer the questions: Are carers distressed? What tasks to (haemodialysis) patients/carers do? As a group, how do carers feel about these tasks? What are carer’s main concerns (public and private)? What advice do experienced carers give to new carers? Messages.
39	Messages Yes, distress is common but not generally directed at patient. There are a lot of tasks to do – communicate and negotiate workloads. Acceptance of machine will come but worry about safety of patient will stay. Patients should try to be as healthy as possible. Carers don’t like to canulate. Carers need a life away from dialysis. Try dialysing at the convenience of the carer. If possible give your carer a routine break. Carers are helped by meeting with other carers.