EAPC - ipac

402 EAPC Abstracts
Andrea Menke Vodafone Foundation Institute for Children’s Pain Therapy
and Paediatric Palliative Care Datteln GERMANY
Markus Blankenburg Vodafone Foundation Institute for Children’s Pain
Therapy and Paediatric Palliative Care Datteln GERMANY
Stefan J. Friedrichsdorf Pain and Palliative Care Program, Children’s
Hospital and Clinics of Minnesota Minneapolis U. STATES
Dörte Garske Vodafone Foundation Institute for Children’s Pain Therapy
and Paediatric Palliative Care Datteln GERMANY
Bettina Hübner Vodafone Foundation Institute for Children’s Pain Therapy
and Paediatric Palliative Care Datteln GERMANY
Joanne Wolfe Department of Pediatric Oncology, Dana Faber Cancer
Institute and Children’s Hospital, Boston, U. STATES
Tanja Hechler Vodafone Foundation Institute for Children’s Pain Therapy
and Paediatric Palliative Care Datteln GERMANY
Background: The purpose of the present study was to investigate bereaved
parents’ perspective on four essential areas: 1) characteristics of the child’s
death, 2) anticipation of their child’s death and care delivery, 3) end-of-life
decisions and 4) impact of the child’s death on the parents and perceived
social support by the health care team. Methods: Cross-sectional observational
study. Parents of 48 children (31 boys, 17 girls), who died due to cancer
were interviewed on average 47 months after the child’s death utilising a
validated semi-structured interview. Results: 48% of the children died at
home even though 88% of the parents chose ‘at home’ as the most appropriate
locale of death in hindsight. Parents anticipated their child’s death on
average 9 weeks prior to the child’s death. When asked how they anticipated
their child’s death 48% reported through a discussion with the health care
team. 41% of the parents provided palliative home care for their child and the
majority (88%) rated the quality of care as good or very good. 64% discussed
end-of-life decisions with the health care team, 36% did not have a discussion.
Parents were clearly affected by their child’s death. However, 15% of
the parents were not contacted by the health care team following the child’s
death. Conclusions: Parents’ perspective on their child’s death and related
end-of-life decisions highlighted the importance of communication between
parents and the health care team. Future studies need to investigate potential
barriers in the communication between parents and the team to optimise
end-of-life decisions and hence, reduce parents’ long-term distress. In line
with the previous, the present data demonstrated that there is still a lack of
routine contact from the health care team following the child’s death despite
existing guidelines. Research is therefore needed into the implementation of
guidelines for routine contact into clinical practice following a child’s death.
10 Oral Presentation
Family and Children
Evaluation of a psycho-educational group program for family
carers in home based palliative care
Authors: Peter Hudson Centre for Palliative Care Education & Research
St Vincent’s & The University of Melbourne AUSTRALIA
John Fisher Grampians Regional Palliative Care Victoria AUSTRALIA
Karen Quinn Centre for Palliative Care Education & Research, St Vincent’s
& The University of Melbourne Victoria AUSTRALIA
Linda Kristjanson Curtin University of Technology Western Australia
AUSTRALIA
Maxine Braithwaite Caritas Christi Hospice, St Vincent’s Hospital
Melbourne Victoria AUSTRALIA
Kristina Thomas Centre for Palliative Care Education & Research,
St Vincent’s & The University of Melbourne Victoria AUSTRALIA
Background: Family carers are often responsible for providing significant
support to relatives who require palliative care at home. However, evidence
suggests family carers have limited information, resources or evidence based
support to prepare them for such a role. Furthermore, family caregiving can
be associated with negative physical, financial and psychosocial outcomes.
This project sought to examine the utility of a group family carer psychoeducational
program focused on preparing primary family carers for the role
of supporting a relative with advanced cancer at home. Methods: The education
program (based on our published pilot work) consisted of three consecutive
weekly sessions presented in a group format, conducted at six home
based palliative care services in Australia. Participating carers were required
to complete a set of self-report questionnaires measuring carer competence,
preparedness, optimism, rewards, social support, burden and information
needs, at three time points: commencement of the program (T1), upon completion
(T2), two weeks later (T3). Carers were also asked to report on the
relevance, accessibility, acceptability, and content of the program. Repeated
measures ANOVAs were utlised for the analysis. Results: Twelve programs
were conducted, with 74 carers attending the first session. Forty-four carers
completed all three data collection sets. Following the intervention, a significant
positive effect was found for the following outcomes: preparedness for
the caring role, caregiving competence, caregiving rewards, and having
information needs met from T1 to T2. These improvements were maintained
at follow-up (T3). Feedback on the individual sessions and entire program
was favorable. Conclusions: This study demonstrated that a group education
program to prepare family carers for the role of supporting a dying relative at
home was accessible, applicable and effective.
11 Oral Presentation
Family and Children
A meta-ethnographic study of informal caregivers’ perceptions
of caring for a loved one or dependant with advanced cancer at
home
Authors: Mandy Stratford Community Specialist Palliative Care Arthur
Rank House UNITED KINGDOM
Jonathan Koffman King’s College London School of Medicine London
UNITED KINGDOM
Background: Previous studies of caring for dependants or loved-ones with
advanced cancer at home have been limited to cross-sectional descriptive
studies. Although few qualitative studies have been conducted, they do provide
a deeper insight into this experience. Aims: To conduct a metaethnographic
review of qualitative studies that explored the informal caregivers’
perception of caring for a ‘loved one’ or dependant with advanced
cancer at home. Methods: Review guided by method developed by Noblit
and Hare. Inclusion criteria include studies published between Oct 99 and
Oct 04. Synthesis of data involved a 7 step process which translated and synthesised
key themes, concepts and metaphors from studies to create new theory.
Results: Systematic literature review identified 12 possible studies for
inclusion. Following application of quality assessment 5 studies were selected.
The following key concepts were identified: (i) ‘Work of caring’ which
included the provision of physical, psychological, social and spiritual aspects
of care and its impact carers’ own well-being; (ii). ‘Relationships’ that existed
between carer and dependant and how they changed; (iii) ‘Informal support’
the meaning of practical, emotional and social support caregivers; (iv)
‘Formal support’ the roles of services in assisting caregivers and the challenges
of accessing appropriate and timely care; and (iv) ‘Finding meaning’
caregivers perception of finding meaning in the role that included reciprocity,
love and achievement. Conclusions: The emphasis of dying at home is
now being promoted by statutory and voluntary sector organisations, but little
attention is placed on the roles of informal caregiving that make this possible.
The results of this meta-ethnography show that caregiving is multidimensional
experience that exacts costs of those involved. Services should
invest more in this underserved and under-research population group.
12 Invited Lecture
Divide et impera: by joint forces and disciplines alleviate
suffering from cachexia
Assessment and classification of cachexia: any promise for
innovative clinical trial design
Authors: Vickie Baracos Department of Oncology, Division of Palliative
Medicine Cross Cancer Institute, University of Alberta CANADA