'Parents’ Priorities in Caring for Children with Life Limiting Conditions Nearing End of Life at Home, a Retrospective Qualitative Analysis' (Poster at HFH 2016 Conference)

1. Parents’ priorities in caring for children with Life Limiting conditions
nearing end of life at home, a retrospective qualitative analysis.
S. Staff1
, H. Noonan2
, M. Mannix3
, KI Quintyne3
,
P. Doyle3
, M. Naughton4
, J. Holmes1
, C. Quinn5
, M. Conroy1,6
, S. Gallagher2,6
1.
Milford Care Centre, Limerick, 2.
Dept. of Paediatrics, UHL, 3.
Dept of Public Health HSE Mid-West,
4.
The Jack and Jill Foundation, 5.
Head of Research LauraLynn Children’s Hospice, 6.
Graduate Entry Medical School, UL
BACKGROUND
Paediatric palliative care needs a flexible coordinated
and collaborative team approach that can respond to the
changing needs of the child and family, particularly at
end-of-life. As a service development initiative, a
steering group of senior professionals identified
bereaved parents experiences as essential in developing
an integrated and progressive childrens pallative care
service for end-of-life care at home.
REF - (Buzgova and Palenikova, 2015, Parker, 2014,
Aschenbrenner et al, 2012, ACT and RCPCH, 2003)
CONCLUSION
This study identifies parents’ priorities for service
provision in caring for children at end-of-life at
home. Key areas for service development are
highlighted to establish integrated, flexible and
coordinated care to maintain parental resilience in
caring for children dying at home.
METHODS
A retrospective qualitative study with purposeful
sampling of bereaved parents was conducted whose
children died at home experiencing the current service.
All parents were bereaved at least 6 months to a
maximum of 36 months. Semi structured interviews
were carried out with an interview guide. Interviews
were digitally recorded and transcribed verbatim.
Transcript data was entered into NVivo for analysis.
Data was analysed using a thematic approach by two
researchers.
AIMS
The study sought to
identify elements of
current service
availability, delivery
and coordination
valued by parents
when their child
was nearing
end-of-life at home.
. 8 parents of 5 deceased children interviewed
. Bereaved parents whose child died at home
. Purposeful sampling - Parents identified by CON
and Jack and Jill Liaison Nurse
. Focus on experience in the last month,
particular last 24 hours of life
PARENT PARTICIPATION PROJECT
THEMES IDENTIFIED
. Experience of services provided, supports, including
bereavement opportunities for improvement
. Period of bereavement 6 months - 2 1/2 yrs
. Age at death range 3 months -14 years
. Study received ethical approval from
UHL Ethics Committee
- Availability of skilled professionals familiar with the child and family
- Communication between key worker, parents & professionals
- Consistent professional with links to acute Paediatric services
- Out of hours support
- Hands on care by skilled professionals at end of life
- Bereavement support with parents initiated prior to the death of their
child was helpful, ie familiarity for ongoing & follow up support
Independent of the individual circumstances,
these priorities were universal and recurrently referenced by parents.
CHILD
&
FAMILY
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HSE
MID-WEST
DISABILITY
SERVICESTHE
JACK & JILL
FOUNDATION
(FOR CHILDREN
<4YRS OLD)
IRISH
CANCER
SOCIETY
SPECIALIST
PALLIATIVE
CARE
SERVICES
SCHOOLS
PUBLIC
HEALTH
NURSE
(PHN)
ENABLE
IRELAND
CHILDRENS
OUTREACH
NURSE
GENERAL
PRACTITIONER
(GP)
CONSULTANT
PAEDIATRICIAN/
NEONATOLOGIST
SERVICES
PROVIDING
PALLIATIVE
CARE AT
HOME