Supporting carers of people with life limiting disease
Clinical Practice Guidelines for the Psychosocial and Bereavement Support of Family Caregivers of Palliative Care Patients – (enhancing care through excellence in education and research)
These guidelines recently published by the Centre for Palliative Care, St Vincent’s Hospital, Melbourne provide more evidence regarding the importance of supporting carers during the course of life limiting disease and into bereavement.
Whilst acknowledging the need for more evidence-based research to guide health professionals in this area this publication provides a resource for health professionals to improve the psychosocial and bereavement support of family caregivers of palliative care patients.
"It is clear that many family caregivers have unmet needs and would like more information, education, preparation and personal support to assist them in the caregiving role".
The importance of assessing the needs of the caregiver and of validating the importance of their role is emphasised. Case studies and examples of verbal strategies to assist health professionals in talking through sensitive issues with palliative care patients and their carers are provided. These scenarios provide a useful tool for health professional teams working with people living with MND.
Supporting MND carers
The need for timely information, education and emotional support for MND carers is particularly critical given the typical rapid progression of MND - the consequent escalation in level of disability and the complexity of need. There is frequently a discrepancy in the level of information/education desired by the person with MND and their carer.
Educating MND carers in techniques to manage increasing levels of disability and the use of medical equipment is an important role of the professional team and the MND Associations.
Emotional support and respite are also vital issues for sustaining carers.
Many state based MND Associations run special education and/or support programs for carers which are endorsed by strong positive feedback from participants. They may also provide information tailored to the needs of carers (for example MND NSW offers a comprehensive Carers Kit which can be ordered in complete form or in individual sections as required).
For more information on the needs of MND carers and supporting articles follow the links on the carer well being and support page on this web site.
Carers issues will be a strong component of the program of the International ALS/MND Symposium and Allied Professionals Forum to be held in Sydney later this year.
Remember work that your team has undertaken with carers of people with MND could be valuable to your peers and can add to the body of evidence regarding the needs of carers and effective carer support strategies.
Links update
Caresearch, the palliative care knowledge network web site, is featured as a resource on the MNDcare web site. There have been a number of new and useful updates to the Caresearch web site recently:
Events update
21 June is a solstice – a turning point - and each year the ALS/MND community undertake a range of activities to express their hope that this day will be another turning point in the search for cause, treatment and cure of this awful disease. Follow this link to view activities planned to commemorate MND/ALS Global Day around Australia.
