Parents’ priorities in caring for children with Life Limiting conditions nearing end of life at home, a retrospective qualitative analysis.

S. Sta�1, 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. �e Jack and Jill Foundation, 5. Head of Research LauraLynn Children’s Hospice, 6. Graduate Entry Medical School, UL

BACKGROUNDPaediatric palliative care needs a �exible 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 identi�ed 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�is study identi�es 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, �exible and coordinated care to maintain parental resilience in caring for children dying at home.

METHODSA 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�e 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

HSE MID-WEST

DISABILITYSERVICESTHE

JACK & JILLFOUNDATION(FOR CHILDREN

<4YRS OLD)

IRISHCANCERSOCIETY

SPECIALISTPALLIATIVE

CARESERVICES

SCHOOLS

PUBLICHEALTHNURSE(PHN)

ENABLEIRELAND

CHILDRENSOUTREACH

NURSE

GENERALPRACTITIONER

(GP)

CONSULTANTPAEDIATRICIAN/

NEONATOLOGIST

SERVICES PROVIDING PALLIATIVE

CARE AT HOME