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

Evaluating a School Community Linked Physical Activity Intervention Programme: a Multi-level Analysis.

Previous research has highlighted the importance of positive physical activity (PA) behaviors during childhood to promote sustained active lifestyles throughout the lifespan (Telama et al. 2005; 2014). It is in this context that the role of schools and teachers in facilitating PA education is promoted. Research suggests that teachers play an important role in the attitudes of children towards PA (Figley 1985) and schools may be an efficient vehicle for PA provision and promotion (McGinnis, Kanner and DeGraw, 1991; Wechsler, Deveraux, Davis and Collins, 2000). Yet despite consensus that schools represent an ideal setting from which to ‘reach’ young people (Department of Health and Human Services, UK, 2012) there remains conceptual (e.g. multi-component intervention) and methodological (e.g. duration, intensity, family involvement) ambiguity regarding the mechanisms of change claimed by PA intervention programmes. This may, in part, contribute to research findings that suggest that PA interventions have had limited impact on children’s overall activity levels and thereby limited impact in reducing children’s metabolic health (Metcalf, Henley & Wilkin, 2012). A marked criticism of the health promotion field has been the focus on behavioural change while failing to acknowledge the impact of context in influencing health outcomes (Golden & Earp, 2011). For years, the trans-theoretical model of behaviour change has been ‘the dominant model for health behaviour change’ (Armitage, 2009); this model focusses primarily on the individual and the psychology of the change process. Arguably, this model is limited by the individual’s decision-making ability and degree of self-efficacy in order to achieve sustained behavioural change and does not take account of external factors that may hinder their ability to realise change. Similar to the trans-theoretical model, socio-ecological models identify the individual at the focal point of change but also emphasises the importance of connecting multiple impacting variables, in particular, the connections between the social environment, the physical environment and public policy in facilitating behavioural change (REF). In this research, a social-ecological framework was used to connect the ways a PA intervention programme had an impact (or not) on participants, and to make explicit the foundational features of the programme that facilitated positive change. In this study, we examined the evaluation of a multi-agency approach to a PA intervention programme which aimed to increase physical activity, and awareness of the importance of physical activity to key stage 2 (age 7-12) pupils in three UK primary schools. The agencies involved were the local health authority, a community based charitable organisation, a local health administrative agency, and the city school district. In examining the impact of the intervention, we adopted a process evaluation model in order to better understand the mechanisms and context that facilitated change. Therefore, the aim of this evaluation was to describe the provision, process and impact of the intervention by 1) assessing changes in physical activity levels 2) assessing changes in the student’s attitudes towards physical activity, 3) examining student’s perceptions of the child size fitness equipment in school and their likelihood of using the equipment outside of school and 4) exploring staff perceptions, specifically the challenges and benefits, of facilitating equipment based exercise sessions in the school environment. Methodology, Methods, Research Instruments or Sources Used Evaluation of the intervention was designed as a matched-control study and was undertaken over a seven-month period. The school-based intervention involved 3 intervention schools (n =436; 224 boys) and one control school (n=123; 70 boys) in a low socioeconomic and multicultural urban setting. The PA intervention was separated into two phases: a motivation DVD and 10 days of circuit based exercise sessions (Phase 1) followed by a maintenance phase (Phase 2) that incorporated a PA reward program and the use of specialist kid’s gym equipment located at each school for a period of 4 wk. Outcome measures were measured at baseline (January) and endpoint (July; end of academic school year) using reliable and valid self-report measures. The children’s attitudes towards PA were assessed using the Children’s Attitudes towards Physical Activity (CATPA) questionnaire. The Physical Activity Questionnaire for Children (PAQ-C), a 7-day recall questionnaire, was used to assess PA levels over a school week. A standardised test battery (Fitnessgram®) was used to assess cardiovascular fitness, body composition, muscular strength and endurance, and flexibility. After the 4 wk period, similar kid’s equipment was available for general access at local community facilities. The control school did not receive any of the interventions. All physical fitness tests and PA questionnaires were administered and collected prior to the start of the intervention (January) and following the intervention period (July) by an independent evaluation team. Evaluation testing took place at the individual schools over 2-3 consecutive days (depending on the number of children to be tested at the school). Staff (n=19) and student perceptions (n = 436) of the child sized fitness equipment were assessed via questionnaires post-intervention. Students completed a questionnaire to assess enjoyment, usage, ease of use and equipment assess and usage in the community. A questionnaire assessed staff perceptions on the delivery of the exercise sessions, classroom engagement and student perceptions. Conclusions, Expected Outcomes or Findings Findings showed that both the intervention (16.4%) and control groups increased their PAQ-C score by post-intervention (p < 0.05); with the intervention (17.8%) and control (21.3%) boys showing the greatest increase in physical activity levels. At post-intervention, there was a 5.5% decline in the intervention girls’ attitudes toward PA in the aesthetic subdomains (p = 0.009); whereas the control boys had an increase in positive attitudes in the health domain (p = 0.003). No significant differences in attitudes towards physical activity were observed in any other domain for either group at post-intervention (p > 0.05). The results of the equipment questionnaire, 96% of the children stated they enjoyed using the equipment and would like to use the equipment again in the future; however at post-intervention only 27% reported using the equipment outside of school in the last 7 days. Students identified the ski walker (34%) and cycle (32%) as their favorite pieces of equipment; with the single joint exercises such as leg extension and bicep/tricep machine (<3%) as their least favorite. Key themes from staff were that the equipment sessions were enjoyable, a novel activity, children felt very grown-up, and the activity was linked to a real fitness experience. They also expressed the need for more support to deliver the sessions and more time required for each session. Findings from this study suggest that a more integrated approach within the various agencies is required, particularly more support to increase teachers pedagogical content knowledge in physical activity instruction which is age appropriate. Future recommendations for successful implementation include sufficient time period for all students to access and engage with the equipment; increased access and marketing of facilities to parents within the local community, and professional teacher support strategies to facilitate the exercise sessions.

Best Practice for Providing Social Care and Support to People Living with Concurrent Sight Loss and Dementia: Professional Perspectives

Purpose-Approximately 100,000 people in the UK aged 75 and over have concurrent dementia and sight loss, but current understanding of their experiences, needs and preferences is limited. The purpose of this paper is to report on a research project that explored the provision of social care and support for older people with both conditions. Design/methodology/approach-The project was a collaboration between the universities of York, Worcester, Bournemouth and Cambridge, supported by the Thomas Pocklington Trust and the Housing and Dementia Research Consortium. Data for this paper were drawn from focus groups held in 2013 involving 47 professionals across the dementia, sight loss and housing sectors. Findings-Thematic analysis identified five main barriers to providing high-quality, cost-effective social care and support: time constraints; financial limitations; insufficient professional knowledge; a lack of joint working; and inconsistency of services. The requirements of dementia and sight loss often conflict, which can limit the usefulness of equipment, aids and adaptations. Support and information needs to address individual needs and preferences. Research limitations/implications-Unless professionals consider dementia and sight loss together, they are unlikely to think about the impact of both conditions and the potential of their own services to provide effective support for individuals and their informal carers. Failing to consider both conditions together can also limit the availability and accessibility of social care and support services. This paper is based on input from a small sample of self-selecting professionals across three geographical regions of England. More research is needed in this area. Practical implications-There are growing numbers of people living with concurrent dementia and sight loss, many of whom wish to remain living in their own homes. There is limited awareness of the experiences and needs of this group and limited provision of appropriate services aids/adaptations. A range of measures should be implemented in order to support independence and well-being for people living with both conditions and their family carers. These include increased awareness, improved assessment, more training and greater joint working. Social implications-People living with dementia or sight loss are at high risk of social isolation, increasingly so for those with both conditions. Services that take an inclusive approach to both conditions can provide crucial opportunities for social interaction. Extra care housing has the potential to provide a supportive, community-based environment that can help residents to maintain social contact. Originality/value-This paper adds much-needed evidence to the limited existing literature, and reflects the views of diverse professionals across housing, health and social 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.

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).