Professor Peter Hudsona, Christopher Hallb, Professor Tom Trauerc, Ms Amanda Bolleterd, Professor David Clarkee, Dr Cheryl Remediosa, Dr Di Cliftonf, Mr Michael Crewdsonf
a Centre for Palliative Care, St Vincent’s Hospital
b Australian Centre for Grief and Bereavement
c Department of Psychiatry, The University of Melbourne
d Cancer and Palliative Care Unit, Department of Health, Victoria
e Monash Medical Centre
f Department of Medicine, St Vincent’s Hospital, The University of Melbourne
beyondblue Victorian Centre of Excellence
Project completion year
This study assessed the mental health of family caregivers of palliative care patients in order to inform ways of maximising support for distressed caregivers. The project was conducted in two phases.
The first phase determined the mental health profile of family caregivers of palliative care patients. A longitudinal study was conducted with family caregivers of patients admitted to one of three palliative care services in Melbourne. A total of 301 people completed a self-report questionnaire, which measured psychological distress, mental health lifetime risk factors and socio-demographic data. The questionnaire was administered at three time points:
- within two weeks of admission to the palliative care services (Time One)
- six months after death, or post bereavement (Time Two)
- 13 months post bereavement (Time Three).
The second phase focused on developing best practice clinical practice guidelines to support family caregivers of palliative care patients. The guidelines are intended to help multidisciplinary health professionals and services respond to the psychosocial and bereavement support needs of caregivers. This phase involved:
- a literature review
- analysis of the research findings from Phase 1
- focus groups and structured interviews with key Australian stakeholders
- national and international expert opinion to develop and further refine the guidelines, using a modified Delphi survey technique.
Phase 1: Mental health profiles
Of 992 eligible family caregivers, 301 agreed to participate at Time One (30 per cent). At Time Two, 171 of the initial participants took part and 145 at Time Three. The majority were female, married, born in Australia and caring for a spouse or a parent with cancer. At Time One, nearly half (44 per cent) of the 301 participants had a probable anxiety/depressive disorder, about 15 per cent met criteria for pre-loss grief and 10 per cent reported moderate/severe levels of demoralisation. Generally, the proportion of participants who met cut-off criteria for measures of psychological distress was reduced or stayed the same from Time One to Time Two (except for demoralisation). Mean levels of anxiety and depression were significantly higher at Time Two than at Time One, however, grief scores did not significantly change. At Time Three, 17 per cent reached the cut-off for anxiety, 13 per cent for depression, 11 per cent for prolonged grief, 17 per cent for demoralisation and 18 per cent for post-traumatic stress disorder (PTSD). Mean levels of anxiety and depression remained the same at Times Two and Three, however, grief scores dropped significantly.
A significant level of burden was a predictor for psychological complications, namely, symptoms of depression, anxiety, demoralisation, prolonged grief and PTSD. Other risk factors were younger patients, particularly if the patient was a spouse or child; living with the patient; low level of carer education; significant impact on finances, health or schedules; low levels of family and social support; poor family functioning; low levels of carer optimism; and high degree of carer dependency on the patient. Predictors at Time One of reaching a diagnosis of psychological distress were generally good indicators of also being distressed at Times Two and Three.
Phase 2: Developing the clinical guidelines
The literature review revealed the tremendous contribution family caregivers make in providing medical, physical, emotional, financial and social support to palliative care patients. While many report their caring experience as positive and rewarding, it is also evident that for some, the provision of care comes at great personal cost and sacrifice and there are high levels of unmet needs, including the need for more information, knowledge and support from health practitioners. On the whole, reviewers of the draft guidelines agreed that they were important, practical, realistic, relevant and applicable to both specialist and general health care providers.
Implications for policy, practice and further research
Given the very high rates of distress in family caregivers of relatives or friends in palliative care, the research recommended all carers be screened on entry to palliative care for anxiety and depression and possibly at six months post bereavement for prolonged grief, PTSD and demoralisation. Counselling and support services need to be available to carers throughout this time, as the prevalence of psychological distress remains high. The research recommended professionally producing, promoting and using guidelines to support caregivers and appropriately funding reviews of the guidelines to ensure they remain clinically relevant. Greater public health support is needed for caregivers, whose personal, financial and social costs need to be recognised and addressed by governments and health services.
A systematic literature review has been accepted for publication and will be available in BMC Palliative Care as Hudson, P., Remedios, C., & Thomas, T. (In Press.): A systematic review of psychosocial interventions for family caregivers of palliative care patients.
Downloadable resources are available from the Centre for Palliative Care at: http://centreforpallcare.org/index.php/resources/