Hannah (She/They) has a Bachelor of Arts in Children, Young People and Families from York St. John University and a Master of Science in Social Policy and Social Research from University College London.
She joined the Cicely Saunders Institute at King’s College London in 2020 as a mixed methods research assistant working on the Children’s Palliative care Outcomes Scale (C-POS) study. Shortly after she won a competitive ARC PhD studentship and began her PhD studies at King’s, working on implementing of C-POS measures into routine practice. She is also the deputy coordinator for the European Association for Palliative Care’s Task Force for improving palliative and end of life care for LGBT+ people
To successfully implement a newly developed measure into clinical practice, the challenges to implementation must be understood. Previous research has focused on disease-specific or generic Quality of Life measures in paediatric healthcare, or the use of outcome measures in adult palliative care. Evidence identifying the perspectives of all key stakeholder groups is needed to ensure successful implementation of new person-centred outcome measures (PCOMs) in the paediatric palliative care context.
Semi-structured interviews with purposively sampled key stakeholders. Children with life-limiting or life-threatening conditions (LLLTC), parents/carers and siblings of children with LLLTC, and health and social care professionals (HSCPs) caring for children with LLLTC were recruited from 9 UK sites. Commissioners of UK paediatric palliative care services were recruited via a non-governmental organisation or direct recommendations. Verbatim transcripts were analysed using a Framework approach analysis and inductive coding in NVivo.
103 interviews were conducted with 106 participants (26 children, 40 parents/carers, 13 siblings, 15 HSCPs, and 12 commissioners). Potential challenges identified by HSCP and commissioners included: (1) gatekeeping by family members and (2) added workload for already stretched services. Potential challenges identified by children included: (1) trusting who administered the measure and (2) privacy concerns around who could access the results. Family members also identified potential challenges relating to (1) added workload for HSCP and (2) privacy concerns around who could access the results.
Whilst some challenges were identified as concerns across multiple stakeholder groups, other challenges identified were unique to specific stakeholder groups. Understanding these different and over lapping perspectives of the perceived challenges is essential for the development of concomitant strategies for implementation of a new PCOM into paediatric healthcare practice. Which in turn helps to support uptake of a PCOM into routine practice.