The Role of Advocacy in children's palliative care

Abstract

‘Role of advocacy in Irish Children’s Palliative Care. What would parents of children with life limiting conditions like?’ Introduction: This presentation will highlight the role of advocacy in children’s palliative care (CPC) and share findings from an Irish small scale parent survey. Recent Irish prevalence figures of 3,840 life-limited children in Ireland published by Ling, O’Reilly, Balfe, Quinn and Devins Oct (2015), infer there must be a need for the role of formal CPC family advocacy within this growing population. The literature helped to inform the design of a survey to identify if Irish parents wish for both formal and informal independent advocacy services in children’s palliative care. The definition of advocacy within CPC is ‘Promoting the concept that care of babies, children and young people who are life-limited should include services, therapies and medicines that will reduce pain and suffering and encompass all their physical, social, emotional and spiritual development needs and that of their families, allowing for the best quality of care.’ (ICPN? date) Research Aims: Previous literature on advocacy (O’Connor & Gwyther 2014 and Shockney 2010), focused mainly on the nurse as the primary advocate for terminally ill children. Yet Simms and Cole (2007), highlighted the role parents can play as advocates for their own children. The Omega Journal of Death and Dying (2015) noted qualitative studies with mothers of severely ill children and how parents became informed and helped others to advocate for their children. Meeker (2004) explored the use of a family surrogate (someone to objectively make decisions/speak for the family) in decision making and Schafer (2006) took the perspective of patient autonomy and family-based decision making. Martin (2013) stresses the advocacy barriers and missed opportunities in the delivery of palliative care and Seal (2007) explains the role of patient advocacy in Advance Care Planning. Also, Turner (2010) and Whitty Rodgers et al (2009) highlight ethical dilemmas in relation to advocacy of a child’s best interests when in conflict to parental preference. This presentation presents the findings from a small scale exploratory survey conducted with parents to explore the requirements for formalised and informal advocacy services for children with LLC and their families. Study Design: A randomised sample of 10 parent respondents who had children with LLC. The data was analysed thematically. Ethical approval was not required as the survey was exempt under service evaluation/ improvement criteria. Statements utilised within this evaluation included for example: ‘I feel listened to about my child’s care needs’. ‘I feel very informed about palliative care. I feel equipped to promote all necessary care and services for my child’. Scale of ‘Fully Agree –Fully Disagree’. Results: Results demonstrate the appetite for advocacy in this field and how the views of parents and families warrant the future design of informal and formal advocacy services within Irish children’s palliative care.