No abstract

This study aims to understand the experiences of professionals involved in caring for families of children with life-limiting illnesses to ascertain unmet needs, access issues and expectations of services. A phenomenological approach comprising semi-structured interviews with professionals from various services was used. Interviews that happened between July and November 2018 were audio-recorded, transcribed verbatim and thematically analysed based on descriptive phenomenology. In total, 29 interviews were conducted. Findings showed how essential collaborative working was for becoming a team around the child. Barriers to this include complex working relationships, overprotectiveness of families, roles and responsibilities and use of independent care records. The pressures of waiting times and the impact of staffing shortages affected the experiences of providing care. The reality of meeting families’ expectations was shaped by family networking, online research and previous services resistance, which was influential in more challenging interactions. Expectations of care were also impacted by misunderstandings and anxieties surrounding access to services. Overall, professionals were concerned about families being used as a bottomless caring resource and stressed the need for short breaks to alleviate parents. Interventions that educate families and professionals on these services and how they can benefit the child and family would be well received.

Results Baseline audit revealed 40% of patients well enough to get dressed were still in pyjamas at lunchtime. No patient went to the day room to eat. First quarter results to be presented at conference, along with patient and staff feedback. Conclusion Despite good physio input, the wider hospice teams could do more to increase patient activity and reduce deconditioning. The 'Sit up, get dressed, keep moving' campaign can be/is appropriate for the hospice setting.

There have been many challenges along the way, however, our journey continues and we have many more miles to go. Early feedback from parents and families is positive and they enjoying the diversity of our service.