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Home
Health Professional Education
Aboriginal Health Practitioners
Aboriginal Health Workers
Aboriginal Liaison Officers
Allied health professionals
Community pharmacists
Home Care Package providers
General practitioners
Nurse practitioners
Registered nurses
Online education modules for registered nurses
Webinars and podcasts
Teaching Carers and Families
Role of the carer
Resources for Aboriginal and Torres Strait Islander Families
Policy
Medicine handling guidelines
Example policy and procedures
Newsroom
Clinical Viewpoints
Conference abstracts
Journal articles / evidence
Newsletters
About
COVID-19 Information
caring@home project
Activities
Acknowledgements
Steering Committee
Education Advisory Group
National Implementation Advisory Committee
Partnerships
Aboriginal and Torres Strait Islander Families
Consultation
Project Activities
Project Acknowledgements
Project Design and Artist
Consortium Members
Meet the Project Team
Art Competition entries
External resources
FAQs
Contact
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caring@home project
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Consultation
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Project Acknowledgements
Project Design and Artist
Consortium Members
Meet the Project Team
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Frequently Asked Questions
ABOUT
caring@home
What is the aim of the
caring@home
project?
caring@home
is a nationally-funded project that aims to improve the quality of palliative care service delivery across Australia. The project resources support people to be cared for, and to die at home, if that is their choice.
caring@home
has developed evidence-based, best-practice resources to support health professionals to teach carers to help manage breakthrough symptoms safely, using subcutaneous medicines, if that is something they want to do. The resources promote a national standardised approach and the use of consistent language.
What are the
caring@home
resources?
caring@home
resources are available for organisations, health professionals and carers to support carers to help manage breakthrough symptoms safely using subcutaneous medicines for a terminally-ill person they are caring for. The resources are applicable in all jurisdictions across Australia.
Resources are available for:
Community service providers:
Guidelines for the handling of palliative care medicines in community services
, developed by NPS MedicineWise
Example Policy and Procedure: Supporting carers to help manage breakthrough symptoms safely using subcutaneous medicines in the home Version 3
Health professionals:
Online education modules for registered nurses
palliMEDs
Carers:
caring@home
package for carers (1MB pdf)
How do I access the
caring@home
resources?
caring@home
printed resources and
instructions for reproducing the
caring@home
package for carers are freely available on this website
for organisations and health professionals to access and download.
Organisations can
order hard copies
of the
caring@home
package for carers on this website.
How do I reproduce the
caring@home
resources for carers?
Whilst the
caring@home
resources can be ordered free-of-charge during the life of the project (until 31 March 2021), in the longer term, services will need to reproduce the resources to use with their carers. All
resources for training carers
and instructions for reproducing the
caring@home
package for carers can be downloaded from this website.
Are the
caring@home
resources available in other languages?
The
caring@home
resources are available in Arabic, Greek, Italian, Simplified Chinese and Traditional Chinese, Tagalog and Vietnamese. Later in 2020, translated resources in Hindi and Punjabi will be available for people in those communities. These
translated resources
are available to download from the website.
How can I contact the
caring@home
project?
The
caring@home
project can be
contacted
by:
Telephone: 1300 600 007
Email:
caringathome@health.qld.gov.au
Website:
www.caringathomeproject.com.au
How can I receive regular updates about the
caring@home
project?
You can register to receive monthly
eNews
updates about the project on the website.
How is the
caring@home
project being evaluated?
The University of Technology Sydney is conducting evaluation of the project via surveys and interviews with carers and nurses.
CARERS’ COMPETENCY AND ATTITUDES TO GIVING SUBCUTANEOUS MEDICINES
Why teach carers to give subcutaneous medicines to help manage breakthrough symptoms?
Australians consistently say they want to die at home; but few achieve this. Palliative care aims to provide care for patients to live and die in their place of choice. A common reason for transfer to hospital is poor symptom management. Teaching carers to give subcutaneous medicines to help manage breakthrough symptoms safely is one strategy to support care and dying at home.
Educating the carer to help manage breakthrough symptoms using subcutaneous medicines reduces the time the patients may be in distress as the carer can help manage these symptoms quickly without having to wait for the support of a health professional and can potentially decrease unwanted and inappropriate admissions to acute care facilities.
What is the evidence that carers can competently and confidently help manage breakthrough symptoms safely using subcutaneous medicines?
The development of the resources was based on a review of existing Queensland-specific resources with input from nurse and carer focus groups and the
caring@home
Steering Committee, Education Advisory Group and National Implementation Advisory Committee. There have been several
published articles
as a result of the implementation of Queensland-specific resources.
Research indicates that with standardised support from health professionals, quality information and resources, carers can confidently, safely and competently give subcutaneous medicines to help manage breakthrough symptoms experienced by the person they are caring for. Carers’ confidence to undertake the task increases after education, especially after the first administration, and carers confidence remains the same regardless of whether the pharmacist, nurse or carer draws up the medicine. In bereavement, carers say they were pleased they had contributed to symptom management and generally feel empowered by the experience.
What role do the
caring@home
resources have in teaching carers to help manage breakthrough symptoms using subcutaneous medicines?
The
caring@home
resources support a standardised, best-practice and evidence-based approach to teaching carers to help manage breakthrough symptoms safely using subcutaneous medicines.
Resources have been developed to support services to develop or modify policy and procedures to support the use of the
caring@home
resources within their organisation.
The online education modules for registered nurses provide specific education for nurses about the
caring@home
resources.
Carer resources
include the step-by-step guides, carers handbook, the practice demonstration kit, short training videos and the carer post-training competency assessment.
How do I assess whether carers have the capacity to give subcutaneous medicines?
This is a service-specific decision and is based on the care team’s clinical judgement of the patient and the carer’s capacity to give subcutaneous medicines. Nurses use their clinical judgement consistently in their work and should continue to do so when determining carer suitability to give subcutaneous medicines. It is the service’s responsibility to have a policy in place about initial assessment and determining patient and carer suitability if they wish. A one-on-one training checklist and carer post-training competency assessment has been developed that can be completed to assess carers competency to give subcutaneous medicines.
When offered the opportunity, why do carers agree to give subcutaneous medicines to help manage breakthrough symptoms?
Carers want to help manage breakthrough symptoms because they want to help ensure that the person they are caring for remains comfortable and stays at home, if that is their wish. Research tells us that carers who have managed subcutaneous medicines for a person who chooses to die at home say they feel a strong sense of achievement and satisfaction from being able to contribute to symptom relief for the person they are caring for. However, if the carer is not confident to take on the role, the carer needs to be reassured that the patient will still be well cared for by the community service. Evidence shows that carers remain motivated to help with symptom management as they believe their ability to provide subcutaneous medicines adds value to patients’ care.
What happens if the carer gives the last dose of medicine before a person dies? Won’t that lead to extra distress for the carer?
Research indicates that, after education, 90% of carers were unconcerned about the possibility of giving the last injection before a person died and carers place high value on the ability to contribute immediately to the symptom needs of the person they are caring for [1]. Nurses need to provide reassurance as part of the communication about death and dying and be aware of the stressors on carers and provide support.
[1] Israel, F, Reymond, L, Slade, G, Menadue, S, Charles, MA.
Lay caregivers’ perspectives on injecting subcutaneous medications at home.
Int J Palliat Nurs. 2008; 14(8): 390 – 395
USING THE
caring@home
RESOURCES
How do I teach a carer to help manage breakthrough symptoms safely using subcutaneous medicines?
If the carer does decide to take on this role, a nurse will teach them what they need to know in a one-on-one training session. There are many resources that have been developed by
caring@home
to support nurses to conduct this training including
online education modules
for registered nurses and the resources for carers:
step-by-step guides, carers handbook, practice demonstration kit, videos and the competency checklist
. These resources are designed to support nurses to teach carers to help manage breakthrough symptoms safely using subcutaneous medicines.
The resources for carers are left in the home so the carer can refer to them at any time. The carer is trained and supported by the nursing service/GP/pharmacist and has access to 24-hour phone support from medical professionals. Clinical judgement is important to determine which resources are most appropriate to meet the learning needs of the individual carers.
How much time does it take to teach a carer using the
caring@home
resources?
Teaching carers requires an initial time commitment of between 30 to 60 minutes. Actual time required depends on many factors however, it does save time later as carers are better prepared to care meaning less phone calls and call-outs for nurses.
How can I offer training, without making carers feel obligated to perform this role or guilty if they don’t want to do it?
The role of giving subcutaneous medicines is voluntary; nurses should communicate this to the carers and make it clear that they can cease this role at any time. The
caring@home
Information for carers brochure
is a useful resource to support this discussion.
Conversations about giving subcutaneous medicines to help manage breakthrough symptoms should not occur in isolation instead, nurses, using their clinical judgement, should have these iterative conversations in the context of the preparatory discussions they are having about recognising clinical changes and deterioration in patients who are dying.
If patients need urgent symptom relief overnight, can’t the after-hours service do that for them?
Patients and families become very distressed if symptoms are not managed in a timely fashion. If a patient and carer are waiting for a 24-hour service to visit there is a risk that the patient will be in distress until support arrives. Some services report that after-hours services response times may be lengthy leading to increased patient and carer distress. In addition, many patients and carers will not have access to a 24-hour home visiting service.
Why do services need to provide 24-hour on-call phone support?
For patient safety and carer confidence, the
caring@home
resources must be used only by services that provide a 24-hour on-call phone number for carers, to provide appropriate clinical advice about managing subcutaneous medicines.
Focus group interviews with carers who used the resources found that carers valued having the reassurance of a 24-hour contact phone number even if they didn’t necessarily use it.
How do I know how to handle palliative care medicines in the community?
The
Guidelines for the handling of palliative medicines in community services
developed by NPS MedicineWise, can be used by community service providers to inform the development of protocols and procedures tailored to the requirements of individual services. These guidelines are applicable to all jurisdictions across Australia.
Page last updated 20 May 2020