Multiple factors influencing provision of support emerged. Formal training and readily available resources would support hospice nurses working with children.

Background: End-of-life care for patients with advanced chronic kidney disease (CKD) is recognised as an important area for improvement. These patients have a significant mortality and, although some is unpredictable, there is a role for the nephrology multi-disciplinary team (MDT) and palliative care physicians to engage in advance care planning and support patients to discuss their preferences. Methods: Retrospective and prospective data were obtained to conduct a comparison observational study to assess the impact of introducing a supportive care register on the end-of-life care for patients with advanced CKD. An electronic supportive care register was implemented. This required a programme of multi-disciplinary staff education, collaborative working with Palliative Care to establish renal-specific protocols and dissemination activities. The impact of the intervention was assessed by analysing all deaths in two six-month periods where all those with an eGFR <15 ml/min/1.73 m² at the time of their death were included. Results: A total of 91 patients were included. Post-intervention, there was a 25.4% (95% CI: 6.5-44.3%, p = 0.008) improvement in patients having a documented discussion about end-of-life planning. There was also a 19.7% (95% CI: 4.0-35.5%, p = 0.01) improvement in establishing the place of death. All patients who expressed a preferred place of death died there. The intervention increased engagement with the wider MDT and led to significant improvements in access to specialist palliative care services. Conclusions: These results show that the interventions implemented to introduce a supportive care register resulted in meaningful improvements to the end-of-life care for patients in our region with advanced CKD.

BackgroundNICE guidance and the National Service Framework for children recommend healthcare professionals consider the whole family's needs prior to a parent's death. Despite evidence that in the terminal phase of a parent's illness children experience elevated levels of stress and demonstrate distress at their parents impending death, there is little work focusing on how their needs are identified.AimsTo explore how hospice nurses identify children's bereavement needs (aged 18 years or younger) when they have a terminally ill parent, and their experiences of supporting children.MethodsIndividual semi-structured interviews were conducted with ten hospice nurses recruited from a single inpatient unit to explore their practice of identifying the bereavement needs of children of terminally ill patients, and their experience of providing support to these children. Transcripts were analysed verbatim and coded thematically.ResultsParticipants identified multiple factors impacting upon children's bereavement, but felt their knowledge was limited. The following key themes emerged:Perception of need – indicated by distress in the well parent, changes in a child's behaviour, or when safeguarding concerns arose.Communication – nurses expressed concern talking directly to children may cause distress.Barriers to provision of support – these included parents blocking discussions, variable supportiveness of colleagues, lack of time and nurses not feeling ‘child-orientated’.Personal experiences of illness and bereavement – nurses related to their own experiences when considering children's needs.Impact on nurses – caring for patients with children was associated with negative emotions. Many felt unprepared, and some expressed concern about letting children down.Education – nurses wanted further training and easily accessible resources.ConclusionsNurses identified professional and personal challenges in recognising and addressing children's bereavement needs and their requirements for support. Further work is needed to develop strategies to overcome these challenges, and address the requirement for additional training.

BackgroundIn January 2013, the support of children aged 18 years and younger with a parent admitted to the hospice was audited. This showed variations in the assessment of children's needs and subsequent discussions within the multidisciplinary team, leading to the formation of a multidisciplinary Task and Finish group to review how this aspect of holistic care can be improved.MethodsA multidisciplinary group met regularly over a 6 month period. Terms of reference were agreed with the aim of reviewing identification of children's support needs, and seeking ways to improve this. Audit standards for adoption by the hospice were agreed to facilitate ongoing service evaluation.ResultsThe group identified a need for the following:Improved documentation: Weekly MDT meetings are a suitable forum for identifying and discussing concerns. A trial of specific prompts for record of discussions increased the documentation of children's knowledge of their parent's illness and the impact of the illness on children and their family to 100% (previously 28.6% and 71.4% respectively).Accessible resources for patients and staff: Approval was gained from the Patient Information Group for age-appropriate leaflets to be freely accessible in the hospice, with additional child bereavement resources available if requested. Cushions showing emotions were purchased for the children's play area to improve communication with younger children.Ongoing review of practice: A steering group was established to continue work focusing on meeting children's bereavement needs.ConclusionsIntroduction of specific prompts to aid documentation of MDT discussions appear to be effective at highlighting the need for additional support for children, whilst still enabling an holistic, individualised approach to patient care. It is recommended that a specific MDT template be developed which incorporates these. The introduction of additional resources and ongoing review by a steering group will facilitate ongoing service development.