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.

Exploring the Experiences of Community-based Children's Nurses Providing Palliative Care

Aim: To explore the experiences of community children’s nurses (CCNs) and children’s palliative care nurses (CPCNs) who provide end-stage palliative care to children with cancer in the family home. Method: A qualitative approach was adopted. One-to-one interviews and facilitated case discussions were undertaken with 30 community nurses who had provided palliative care to a child or young person with cancer. A grounded theory approachwas used for data analysis. Findings: Because of the relative rarity of childhood cancer many CCNs and CPCNs engage infrequently in the palliative care of children or young people. This makes it difficult for them to develop and maintain knowledge and skills. There is a variation in the out-of-hours service provision available to families. Conclusion: Further funding is needed to develop teams of trained, experienced CCNs and CPCNs who can provide palliative care for children and young people 24 hours a day and 365 days a year. Keywords Community nursing, oncology, out-of-hours services, palliative care

Caring for Children Dying from Cancer at Home: a Qualitative Study of the Experience of Primary Care Practitioners

Background. The rarity of childhood cancers makes providing palliative care in the community an unusual event for primary care practitioners. Providing this care requires effective interprofessional collaboration with the team that forms to provide the care often working together for the first and only time. Objective. To explore the experiences of primary care practitioners following their involvement in the palliative care of a child with cancer at home. Methods. The study design was a community-based qualitative study. The study location was the West Midlands region. Purposeful sample of GPs and community nurses involved in providing palliative care to 12 children. One-to-one in-depth interviews with 47 primary care professionals (10 GPs and 37 community nurses) and 5 facilitated case discussions were undertaken. Field notes were documented and grounded theory data analysis undertaken: chronological comparative data analysis identifying generated themes. Results. GPs had minimal input into the preceding care of children undergoing treatment for cancer but sought to re-establish their role at the child’s transition to palliative care. GPs felt they had a role to play and could add value to this phase of care, highlighted their continuing role with the child’s family and acknowledged that they had gained from the experience of contributing. However, lack of specialist knowledge and uncertainty about their role within the team made this more challenging. In contrast, community nurses were routinely involved in both active treatment and palliation care phases. There was little evidence of collaboration between the specialist and primary care professionals involved. There was considerable variation in out of hours provision across cases. Conclusions. Engaging primary care practitioners needs to be more actively anticipated and negotiated at the transition to palliation. Variation in out of hours care is another cause for concern. Enhancing inter-professional collaboration and planning during both active and palliative care phases may help. Keywords. Cancer, family medicine, palliative care, paediatric.

Providing Palliative Care for the Child with Cancer: The Experience of GPs

Background Childhood cancers are rare and general practitioners (GPs) have limited experience in caring for these children and even less in providing their palliative care. Most families prefer that their child is cared for at home in the palliative phase of their illness, with professional support from those known to them (Chambers and Oakhill 1995, Vickers and Carlisle 2000, Craft and Killen 2007). A community based qualitative study examined the experiences of ten GPs following their involvement in the care of a child with cancer receiving palliative care within the family home. Methods Data collection was through 1:1 in-depth interviews and facilitated case discussion supported by field notes and grounded theory analysis (chronological comparative data analysis identifying generated themes). Social worlds theory was used as a framework to aid examination, and facilitate critical understanding, of the experiences of the GPs. Findings This presentation focuses on five of the findings relating to the experiences of the GP; the impact of minimal contact; lack of knowledge and experience, uncertain role, out of hours service provision and the emotional toll. Findings highlighted that GPs often have to re-establish their role at the child’s transition to palliative care. Factors hindering the GP in this process include a deficit of specialist knowledge and experience of paediatric palliative care and lack of role clarity. Conclusions/points of interest Strategies for enhancing the role of the Macmillan team in supporting GPs have been identified by this study, such as enhanced collaborative working. Findings have also provided further confirmation of the substantial variation in out of hours medical palliative care provision; with evidence that some GPs work beyond their remit in providing informal out of hours care. This presentation details the findings of one aspect (the experiences of GPs) of a wider study that explored the experiences of 54 community based health professionals (GPs, community nurses and allied health professionals) who had been involved in caring for a dying with cancer receiving palliative care at home (Neilson 2009).

Myths and Realities of Inter-professional Working

Introduction: Childhood cancers are rare and community based health care professionals have limited experience in caring for these children and often even less experience in providing their palliative care. It is well recognised that the provision of palliative care falls beyond the remit of any one profession, thus inter professional working is the standard model. This qualitative study aims to examine the experiences of the range of health care professionals involved in providing palliative care at home for children with cancer, focusing on how knowledge is exchanged; the level of communication and support both interprofessionally and at the community/specialist interface. It also aims to examine interprofessional collaboration in palliative care; identifying healthcare professional's perceptions of problems involved, interprofessional boundaries, specific areas of the organisation or provision of care that could be enhanced through changes in practice, support issues and the educational needs of health professionals. Methods The study involves three types of data collection; in-depth interviews, facilitated case discussion (FCD) and field notes from up to 20 cases (a "case" refers to the provision of palliative care to one child). Cases are selected from children who were treated at one regional childhood caner centre. For each case the community based health care professionals (for example the GP, community nurse or health visitor) involved in the care of the child at home are invited to participate in a one-to-one tape recorded in-depth interview followed by a group discussion in the form of a FCD. Field notes are completed following each interview. Data analysis follows a grounded theory approach. The term "social worlds theory" (SWT) his used to define a type of social organisation with no fixed or formal boundaries (such as membership boundaries), for example the range of health professionals that work together to provide palliative care. The boundaries of SW's are determined by the interaction and communication between recognised organisations, such as community nursing teams and general practitioners. SWT examines encounters between different professional groups and can be used to extend knowledge in both the organisation (for example general practice) and the content of what is being provisioned (for example, palliative care). The use of SWT in the analysis of the data is through examining the ethos of the different professions and the associated individual approaches to palliative care, exploring how this determines their roles in the provision of palliative care. Results 10 cases have so far been completed: 47 1:1 interviews (with a range of between 2-7 health care professionals being involved in each case): ( 9 x GP, 19 x CCN, 4 x DN, 3 x HV, 1 x HV assistant 7 x paediatric palliative care nurses, 1 x home support worker, 1 x OT, 1 x physiotherapist, 1 x community paediatrician) and 5 x FCD. The range of participants in the FCDs reflected that of the individual interview sampler. Data obtained to date gives clear insight into the personal experience of the individual health care professional in providing palliative care. Two themes emerging from the data will be focused upon: the continuity of care provision throughout treatment and palliation and the emotional burden experiences by the health care professional. Conclusions SWT can provide a useful framework in examining the social worlds of a disparate group of health care professionals working together for the first and maybe, the only time. A wide variation in the continuity of care provision has been found not only between professions, but also within professions. The emotional burden is evident across the professions.