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

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.

What do GPs and Bereaved Parents Think About Paediatric Oncologists and Palliative Care?

Aim The aim of the study was to examine the experiences of bereaved parents and general practitioners (GPs) following the death of a child with cancer within the family home. This presenta-tion focuses on one of the findings; the parent and GP views on the hospital consultants’ involvement in the palliative care. Design A community based qualitative study.Setting West Midlands region, UK. Participants Purposeful sample of 18 GPs and 11 bereaved families. The sample was drawn from the families and GPs of children who had been treated for cancer at a regional childhood cancer centre and who subsequently died within the family home. Methods One-to-one semi-structured tape-recorded interviews were undertaken with GPs and bereaved parents following the death at home of a child with cancer. GPs were contacted three months after the death of the child and the parents at six months. Thematic analysis of the transcriptions was undertaken. Findings Parents described feeling abandoned at the transition to palliation when management of care transferred to the GP. Families did not perceive a seamless service of medical care between hospital and community. Where offered consultant contact was valued by families and GPs. Text and email were used by families as a means of asking the consultant questions. The GPs lacked role clarity where the consultant continued involvement in the care. Conclusions The transition to palliation and the transfer of care to community services needs to be sensitively and actively man-aged for the family and the GP. Medical care between tertiary andprimary care should be seen as a continuum. Improving GP: consultant communication could aid role clarity, identify mecha-nisms for support and advice, and promote the active engagement of the GP in the care. Exploring opportunities for integrated con-sultant: GP working could maximise mutual learning and support and enhance care provision. The level, access and duration of ongoing contact between consultants and families/GPs require clarity.

Approaching Models of Nursing from a Postmodernist Perspective

This paper explores some questions about the use of models of nursing. These questions make various assumptions about the nature of models of nursing, in general and in particular. Underlying these assumptions are various philosophical positions which are explored through an introduction to postmodernist approaches in philosophical criticism. To illustrate these approaches, a critique of the Roper et al. model is developed, and more general attitudes towards models of nursing are examined. It is suggested that postmodernism offers a challenge to many of the assumptions implicit in models of nursing, and that a greater awareness of these assumptions should lead to nursing care being better informed where such models are in use.

The Art of Nursing in a Postmodern Context

Notions of the "postmodern" pervade various fields of study, but have rarely been applied to the practice and theory of nursing. This paper uses some conceptions of the "postmodern" to remedy this. Though there are many contested usages of the term, here "postmodern" will be used broadly in a periodical sense to trace changes in society and culture from the "modernism" of the 18th and 19th centuries to current concerns about "postmodernism". How these changes have been reflected in nursing practice and nursing theory will be explored. The changing use of the term "modern" to describe up-to-date practice will be addressed in the course of this. It is suggested that contextualizing nursing as a social/cultural activity in this way offers perspectives which will help us untangle the conflicting agendas and issues which form the fabric of the social world in which current nursing takes place, enabling us to act more effectively in promoting our own professional agendas.

Poetry With People With Dementia: An Evaluation of a Two Year Project Engaging in Poetry Activities With Older People in Residential and Nursing Homes.

This paper is a summary of an evaluation of the first two years of a three year poetry project for older people with dementia. The project was set up with a poet in residence who mentored six poets to deliver poetry activities to older people and those with dementia in residential and care homes in Herefordshire. The project was developed and run by the Courtyards Hereford. The evaluation was undertake through the use of questionnaires that were given to staff and carers undertaking training workshops and the poets, staff and carers in the homes who facilitated the activities and finally by the residents who took part in the project. The main findings were that participants that responded to the questionnaire for staff and carers it had increased confidence and assisted them in gaining more knowledge about the residents, whilst for residents it had a number of positive effects including enhanced communication, increased self-esteem and enhanced self-worth whilst making them feel less isolated.

Towards the End of Life: an In-depth Exploration of the Role of Admiral Nursing in Dementia Care (Innovative Practice)

There are approximately 150 Admiral Nurses in the UK who work alongside other health and social care professionals to support people with dementia and their family carers. However, the stigma of the disease and the lack of recognition that dementia is a life limiting illness have led to neglect in addressing the end of life challenges. The small in-depth study reported here aimed to add to an extremely limited formal evidence base for the effectiveness of this approach and to develop a greater understanding of the range of knowledge and skills required of them in ensuring they are better able to support families in the later stages of the illness. Findings focus on the experiences of family carers, the impact of performing the Admiral Nurse role and the use of qualitative measures in this setting.