Using Social Worlds Theory to Explore Influences on Community Nurses’ Experiences of Providing Out of Hours Paediatric Palliative Care

Abstract Background: Paediatric oncology palliative care in the community is rare and nationally there is a lack of standardisation of out of hours nursing service provision. Objectives: This paper seeks to explore influences on the experiences of paediatric nurses providing out of hours palliative care within the family home to children with cancer. The study used social worlds theory to aid identification and demonstration of the findings. Methods: Twelve community-based palliative cases were purposively selected from children with cancer treated at one regional centre. Tape-recorded interviews were undertaken with 54 health professionals (general practitioners, community nurses and allied health professionals) involved in providing their palliative care and five facilitated case discussions completed. Data analysis followed a grounded theory approach; chronological comparative data analysis identifying generated themes. Social worlds theory was used as a framework to examine the data. Results: Nurses’ experiences are shaped by their social world and those of the nursing team,child and family and the inter-professional team providing the care. The lack of a formalised service, sub-optimal inter-professional working and impact of social worlds influence the experience of the nurse. Conclusions: Social worlds theory provided a new perspective in understanding these experiences based within a paediatric palliative care setting, knowledge that can be used to inform service provision.

Large-scale Roll Out of Online Prospective Measurement of Mood Symptoms in Affective Disorders

Background and Aims: True Colours is an online prospective mood-monitoring system developed at the University of Oxford to assist local patients and clinicians with monitoring course of illness in bipolar disorder. We report our initial experiences of using True Colours for research purposes in the Bipolar Disorder Research Network (BDRN; www.bdrn.org), a large research network of individuals with mood disorders spread throughout the UK. Methods: After initial piloting to ensure the practicality/acceptability of using True Colours within BDRN, we invited all BDRN participants (n = 7000) to participate in weekly True Colours ratings via three postal invitations sent over an 8-month period. Results: Following the three postal invitations, 915 individuals have so far expressed an interest in joining True Colours, and, of these, 662 (72.3%) have registered. 32 of those who registered for True Colours (5%) have so far asked to leave the system. Positive feedback from participants has focused around the ease of use and convenience of True Colours and potential clinical utility of the graphical representation of weekly mood scores. Conclusions: We have demonstrated that large-scale prospective mood monitoring for research purposes using a contemporary online approach is feasible. Challenges have included: (i) variation in participants’ technological ability; (ii) management of requests for clinical advice based on mood scores within a research setting; and, (iii) resources required to provide access and on-going support for participants using True Colours. We continue to expand recruitment to True Colours within BDRN, and plan to trial email invitations in the next phase of recruitment.