An interventional study of Questionnaire and interview in Cancer, sponsored by Rennes University Hospital. Completed at 1 site in France. Open to participants aged 18 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2015-12-18.
Sponsored by Rennes University Hospital · Not applicable and Interventional
Cancer is the second cause of over-one-year-old children mortality after accident. Survival rate is more than 70%, but in some cases, curative treatments are not sufficient and palliative support is implemented for those children in end of life.
Pediatric guidelines about the place of end-of-life care are varied. On European scale, home is recommended (IMPaCCT study, 2007). In France, the 2008-2012 palliative care development program recommended home or initial hospital care unit. This program also supports implementation of mobile team rather than specific hospital units.
In Brittany, a pattern of regional palliative care resource team has been implemented since 2005. In oncology, further to the guidelines, end-of-life place of care is often discussed several times for each case. Sometimes occur a lot of returns between home and hospital, psychological difficulties, and difficulties to offer adapted care conditions. Finally, less than 30% of children in palliative care decease at home.
The primary objective is to identify main determinants of the place of palliative care in pediatric oncology.
The secondary objective is to clarify the factors of change comparing to the initial planned place.
Intervention :
Questionnaire completed by the parents Interview with the parents and the psychologist (University Rennes 2)
Number of subjects is : Parents of 68 to 93 children who died from cancer after a palliative phase, that means 136 to 186 parents.
Expected results and perspectives :
Using both quantitative and qualitative methods, expected results are the followings:
Once identified, main factors could be the ones to pay attention to in order to help for initial decision, better anticipation of change of place and better guidance of palliative care organization wherever, at home or in hospital.
Results would be new information for research on palliative care for children but also for adults.
Finally, this work is part of an improving approach of palliative care, related to the development of open-care hospital networks. We can expect some public health impacts with new arguments to help for complementary recommendations.
Eligibility criteria :
Inclusion criteria are :
Parents of a deceased child
Exclusion criterium is :
Parents of child who deceased after 2010 (respecting a bereavement delay)
Outcomes measures :
Primary study endpoint : Consideration or not by parents that they and/or their child had the choice of the end-of-life place of care.
Secondary study endpoints :
572 studies on the registry are indexed under Death; 111 are open to participants now.
This study's enrollment of 45 is below the median of 133 across 260 interventional studies indexed under Death.
Browse Death studies →Rennes University Hospital is the lead sponsor of 440 studies on the registry; 51 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Parents of a deceased child
Exclusion Criteria:
Parents of child who deceased after 2010 (respecting a bereavement delay)
Questionnaire completed by the parents Interview with the parents and the psychologist (University Rennes 2)
Other: Questionnaire and interview
Questionnaire completed by the parents Interview with the parents and the psychologist (University Rennes 2)
Consideration or not by parents that they and/or their child had the choice of the end-of-life place of care.
Consideration or not by parents that they and/or their child had the choice of the end-of-life place of care.
Time frame: interview day
Objective factors
Objective factors : grade, occupational categories, marital status of parents, siblings, home conditions, access to the hospital, meeting with a professional of palliative care network, helpful general practitioner, volunteers, psychological support but also unexpected symptoms, needed nursing care which can explain a return from home to hospital for instance
Time frame: Interview day
Subjective factors
Subjective factors such as family or religious values, needs of intimacy, communication, support, sense of security, anxiety, fear, doubts about the next events.
Time frame: Interview day
This study is completed, as verified in Dec 2015. You cannot join it, but the record below documents what was studied.
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Rennes University Hospital