Priority 4 from the Palliative and end of life care PSP

UNCERTAINTY:  What information and training do carers and families need to provide the best care for their loved one who is dying, including training for giving medicines at home?
 (JLA PSP Priority 4)
Overall ranking 4
JLA question ID 0026/4
Evidence

Capurro D, Ganzinger M, Perez?Lu J, Knaup P. Effectiveness of ehealth interventions and information needs in palliative care: a systematic literature review. Journal of Medical Internet Research.2014;16(3):e72 DOI: 10.2196/jmir.2812

Horey D, Street AF, O'Connor M, Peters L, Lee S. Training and supportive programs for palliative care volunteers in community settings (Protocol). Cochrane Database of Systematic Reviews 2011, Issue 12. Art. No.: CD009500. DOI: 10.1002/14651858.CD009500

Candy B, Jones L, Drake R, Leurent B, King M. Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database of Systematic Reviews 2011, Issue 6. Art. No.: CD007617. DOI: 10.1002/14651858.CD007617.pub2

Ongoing trials: Exploratory delayed intervention randomised controlled trial to investigate the feasibility, acceptability and potential effectiveness of a volunteer-led model of social and practical support with community dwelling adults living with advanced life-limiting illness in Limerick, Ireland. ISRCTN18400594  

The effectiveness of the National Quality Improvement Program Palliative Care on the number of patients that die at the preferred place, the patients? and family?s experienced control regarding end-of-life care, the patients? and family?s experienced coordination of end-of-life care, the patients? and family?s experienced concordant care with their needs, preferences and values, and the number of patients and families that receive care for their needs in the physical, psychosocial, and spiritual domains - N/A http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4085  

A prospective cohort study exploring the impact of offering telehealth support to palliative patients and their family caregivers to enhance the community based palliative care service http://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=12613000733774  

For family carers of hospitalised palliative care patients, does a Structured Family Meeting shortly after admission to palliative care, compared to standard care only, improve psychological distress? http://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=367927

Health Research Classification System category  Generic
Extra information provided by this PSP
Original uncertainty examples If I had had more idea of what it involved and more support during the process I suspect I could have avoided the resulting problems for me  ~  I knew she was dying but I did not know how it would happen. Had I known in advance I would have been able to help more I'm sure of it.  ~  The families and carers need to be talked through the whole process.  ~  I have found that palliative pt's and families are not given enough information.  ~  Ability for carers to have some training to recognise the end of life signs.
Submitted by Bereaved Carers x 6  ~  Professionals x 4  ~  Carers x 1  ~  Volunteers x 1
Outcomes to be measured Patient Satisfaction; health related quality of life; health related cost; good death; information needs
PSP information
PSP unique ID 0026
PSP name Palliative and end of life care
Total number of uncertainties identified by this PSP. 83  (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop 21 November 2014