PALLIATIVE CARE
LEGAL
Community nurses’ participation in palliative care research: The Dignity Care Pathway Jane Andrew, Bridget Johnston, Constantina Papadopoulou
Jane Andrew is Practice Educator, Palliative Care Services, Dundee, NHS Tayside, UK; Dr Bridget Johnston is Reader in Palliative Care, School of Nursing and Midwifery, University of Dundee, UK; Constantina Papadopoulou is PhD Student, School of Nursing and Midwifery, University of Dundee, UK Email: [email protected]
Abstract Evidence-based practice is a cornerstone of modern health care. Ongoing challenges have been identified in the strength of the evidence base in community palliative care nursing (Walshe and Luker, 2010). This paper discusses the participation of community nurses in a palliative care research project. The Dignity Care Pathway (DCP) is an evidence-based framework developed using a collaborative research approach with community nurses in Scotland. Collaborative research has been advocated as one way to facilitate integrated knowledge transfer and to address the research–practice gap. The aim of this paper is to discuss the participation of community nurses in a collaborative research project to implement a palliative care intervention in practice. The discussion will draw on findings from the third phase of the DCP multiphase research project.
KEY WORDS
Community nursing w palliative care w dignity w collaborative research
326
the best available evidence to guide clinical practice and regarding the continuation of the research–practice gap (Squires et al, 2011). Factors that facilitate or hinder research utilisation in nursing are discussed in the literature (McKenna et al, 2004; Veeramah, 2004; Thompson et al, 2005; Hilton et al, 2009). In a recent systematic review of individual determinants of research utilisation by nurses, Squires et al (2011) reported that positive statistically significant relationships for research utilisation were found in four areas: beliefs and attitudes, information seeking, education, and professional characteristics, with attitudes towards research and current roles being highlighted.
Approaches to implementation In the recent literature there has also been discussion about approaches to implementation of evidence into practice and knowledge transfer (Wallin, 2009; Bellman et al, 2011). A number of approaches are described, including the Promoting Action on Research Implementation in Health Services (PARiHS) framework (Kitson et al, 2008) and the Knowledge to Action process (Graham et al, 2006). In a recent review of evidence on knowledge transfer, undertaken to support the development of a Knowledge to Action framework for NHS Scotland, Davies et al (2011) highlighted the spectrum of activities that can support knowledge transfer, from concrete interventions, which increase the use of specific knowledge, to the influence of cultural and organisational factors on research engagement. The integrated knowledge transfer approach described by Graham (2007), outlined in Figure 1, can be recognised in the nursing literature. Examples of collaborative research are found in community nursing (Kirkpatrick et al, 2012), acute care (Bridges and Meyer, 2007), and in nursing older people (Tolson et al, 2006). However, it is also acknowledged that clinical nurses may not feel confident or comfortable becoming involved in the research process (Andrew et al, 2008), or may not have opportunities to do so. This paper will discuss the involvement of community
© 2013 MA Healthcare Ltd
E
vidence-based practice is advocated as the cornerstone of modern health care (Newell and Burnard, 2011) and is an umbrella term that encompasses different professional perspectives, including nursing viewpoints (Scott and McSherry, 2008). Evidence-based nursing (EBN) is defined as ‘an ongoing process by which evidence, nursing theory and practitioners’ clinical experience are critically evaluated and considered in conjunction with patient involvement, to provide delivery of optimum nursing care for the individual’ (Scott and McSherry, 2008). EBN requires the generation of research evidence, the appraisal of this evidence, and the uptake and transfer of evidence into practice, which remains a challenge for nursing (Newell and Burnard, 2011). Ongoing concerns are expressed regarding the extent to which nurses use
British Journal of Community Nursing Vol 18, No 7
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 7, 2015. For personal use only. No other uses without permission. . All rights res
PALLIATIVE CARE
A research-based approach, also known as collaborative research, actionorientated research, or co-production of knowledge. Stakeholders are integrated into the entire research process, including:
w Shaping the research questions/objectives w Deciding on research methodology w Helping in data collection and tool development w Interpreting the research findings w Crafting the message and disseminating research results w Moving the results into practice. Production of research findings that are more likely to be relevant to, and used by, the end users.
nurses in a collaborative research project and give some reflections on how the process may influence knowledge transfer and implementation in practice, using the framework described by Graham (2007). Collaborative research has been described by Krebbekx et al (2012) as an approach in which ‘working in partnership, researchers and practitioners can produce research that generates academic knowledge to inform the field, as well as knowledge about ways to improve the efficiency and effectiveness of practice’. Furthermore, it has been suggested that research that involves collaboration between academics and practitioners is one way in which theorybased practice and practice-based theory may be generated and bridge the research-practice gap (Green, 2008; Krebbekx et al, 2012).
Community palliative care nursing Despite growth in palliative care nursing research over recent decades, the evidence base remains limited, and there is an ongoing need for research and investment in well-designed studies (Addington-Hall, 2007; Howell, 2011). In the UK there has been a strategic policy focus on improving the quality of care provided to people nearing the end of life with all conditions and in all care settings (Department of Health, 2008; Scottish Government, 2008, 2011), and a trend towards home being the preferred and actual place of care at the end of life (Gomes et al, 2011). Community nurses have a central role in the provision of palliative care in the home (Burt et al, 2008). However, a recent systematic review of evidence in community nursing highlighted the dearth of research evaluating the impact of community nursing actions (Kennedy et al, 2008). In palliative care, a realist review of the role of district nursing in care provision confirmed the need for research that illuminates and guides outcomes in community palliative care nursing (Walshe and Luker, 2010).
328
Dignity Care Pathway project The Dignity Care Pathway (DCP) (Figure 2) is an intervention that can be utilised by community nurses to assess and respond to dignity-related concerns with people nearing the end of life. The pathway has been developed and tested in a multiphase research project (Johnston et al, 2012, 2013). Development of the DCP has used a collaborative research approach involving groups of community nurses in Scotland who participated in the development, testing, and implementation of the pathway at all stages of the research process. w The first phase was a narrative review of the literature pertaining to dignity-conserving care at the end of life (Ostlund et al, 2011) and focus groups with patients, carers, patients and carers, community nurses, and GPs to gain context-specific evidence, and to assess whether the dignity model ‘fitted’ with nurses’ clinical practice (Brown et al, 2011). w The second phase involved the development and evaluation of the DCP. This phase included patients, carers, and community nurses in a Health Board area in northwest Scotland (Johnston et al, 2012). w The third phase, undertaken in a different Health Board area in Scotland, was the implementation of the pathway and evaluation from the perspective of patients and carers. The views of participating community nurses were also sought. Community nurses, managers, and other key stakeholders were involved in the implementation and project steering group (Johnston et al, 2013).
Community nurses’ involvement in phase three The following discussion will draw on themes that illuminate the community nurses’ experiences of participation in the third phase of the research, and illustrative quotes from the study will be provided. Focus groups were conducted at two time points during the study, before and after use of the DCP, to gather evidence on community nurses’ views on implementing the DCP. NHS and research and development approval were obtained through the East of Scotland Research Ethics Committee. The study was conducted across three community health partnerships (CHPs), which included both urban and rural populations, in the northeast of Scotland. In total, seven focus groups were conducted with 25 community nurses participating: four before the implementation of the DCP and three post-implementation. To support implementation, the nurses were provided with two half-days of education on the background and use of the pathway. Data from focus groups were analysed using framework analysis (Ritchie et al, 2003). The experience of participating in a research project was the main theme identified from the focus group data. Of the 25 community nurses involved in the project, only five mentioned having some previous research involvement. However, the opportunity to be involved in a research project was deemed to be ‘important’ and in some way
© 2013 MA Healthcare Ltd
Figure 1. Integrated knowledge translation (Graham, 2007).
British Journal of Community Nursing Vol 18, No 7
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 7, 2015. For personal use only. No other uses without permission. . All rights res
PALLIATIVE CARE ‘reassuring’ and affirming of the nursing care they were providing to patients. For some nurses it opened up their perspective on practice and supported reflection on and in action:
‘I would say I appreciated being involved in the research because it demonstrated to me that I do these things, so it reassured me that I do cover all that, so that’s why I did enjoy doing it and thinking… yeah, I’m doing this correctly’ (FG6 CN3). One factor that can be a significant influence on the successful outcome of a project is the way in which nurses gain entry to the research. Nurses were invited either by way of an introductory letter via their manager or by following information provided at a local palliative care study day. All those who participated had noted an interest in developing palliative care practice:
‘For us it was brought up at one of our team meetings; our team leader sort of picked our group out. She thought that would be quite a good step forward and we’ve always been interested in this side, the palliative care side.’ (FG2-CN3 (pre)). Two half-days of education were provided to support the study and implementation of the DCP. This allowed familiarisation with the pathway and all participants reported finding the sessions helpful. Nurses were provided with a manual summarising the intervention, the background to it, and the key papers supporting the study. The amount of information provided during the two half-days of training was described by participants as adequate:
‘I think it gave opportunity to ask questions and clear up, or clarify some things that maybe we were uncertain about, the training seemed to explain the purpose, the use, the background.’ (FG3-CN2 (pre))
© 2013 MA Healthcare Ltd
‘I don’t think there was anything lacking in the two half-days; it was adequate for what we got, information.’ (FG1-CN2 (pre)) Working with the research team during the training days supported collaborative relationships that facilitated any issues or queries that arose during the study being shared and addressed. For example, a number of nurses raised concerns about the wording ‘nearing the end of life’ used in the participant information sheets. Subsequent discussion during the project’s steering group led to the amendment of the information sheets to include ‘with advanced disease’. The project implementation was facilitated by an experienced community nurse who was well known across the area because of previous roles held as a district nurse, palliative care nurse specialist and project manager. The collaborative relationship with the research team and the facilitator proved vital to the success of the project:
British Journal of Community Nursing Vol 18, No 7
Figure 2. Dignity Care Pathway The DCP framework comprises:
w Patient Dignity Inventory (PDI) (Chochinov et al, 2008), which is used to identify dignity related issues and concerns w Reflective questions, which help to further assess identified issues and explore patients’ views and preferences w Evidence based care actions suggested for each item on the PDI w Care actions that can be evaluated by revisiting the PDI. Johnston et al, 2012, 2013
‘I actually thought it was fine, and if I did feel there was something missing I knew I would be able to phone you up and speak to you [the facilitator] about it.’ (FG4-CN1 (pre)) Nurses identified a number of practical issues relating to the research and implementation of the pathway in their routine practice. Firstly, although the pathway was potentially applicable with all patients with palliative care needs, there were concerns about identification of appropriate patients. Nurses reported that having an established rapport with the patient, knowing the patients’ understanding of their prognosis, their ability to articulate responses, and consideration of the family dynamic were the main criteria that they considered in selecting participants with whom to use the DCP. The difficulties associated with identifying prognosis in frail elderly people and patients with nonmalignant conditions, such as chronic obstructive pulmonary disease or renal failure, led the community nurses to focus mainly on cancer patients when using the DCP. The selection of patients was also influenced by the identification of those who nurses felt would be able to cope with the research element of the project, and with whom the nurse felt comfortable.
‘I chose my patients; advanced disease; they were needing quite a lot of care; they were articulate. I had already built up relationships with them both … people that I felt were comfortable with it and obviously I checked out with them prior to doing it, if it was OK.’ (FG6-CN1 (post)) The second issue was choosing the appropriate time and way to introduce the pathway and the research project. The participants in the focus groups were experienced nurses; they felt that dignity-related issues were addressed within each visit to the patients. A number of nurses introduced the pathway formally, explaining that it was part of a research project, while others felt more comfortable incorporating it into their routine practice. Due to time constraints some had difficulty introducing the pathway in a way that would not repeat previous conversations;
329
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 7, 2015. For personal use only. No other uses without permission. . All rights res
PALLIATIVE CARE
‘I was actually going to introduce a questionnaire to a lady yesterday, but when I went into the house she got quite upset, she was quite tearful, so we, I, sat and chatted but I just looked at the aide-memoire before I went in so I kind of, I didn’t actually bring out the questionnaire. I might do that today, but I just sort of incorporated some of the ideas.’ (FG3-CN1 (pre)) Lastly, the impact of service demand and time restrictions in conjunction with participating in a research project could create tensions in the management of everyday workload. The community nursing workload can be unpredictable and uncertain, especially when caring for patients who are seriously ill. Some nurses negotiated specific time within their teams in order to participate and implement the pathway; others managed to integrate the research into routine caseload work. Despite the possible challenges that may have to be considered when participating in a research project, the nurses acknowledged the merits of their involvement. As the DCP is evidence-based, it was seen as an effective way to implement evidence in practice and to bridge the perceived gap between research and practice. The Patient Dignity Inventory (Chochinov et al, 2008) assessment tool within the DCP offered the nurses a structured way to assess all dignity-related concerns.The framework could then be used flexibly to accommodate the individual needs of patients and was found to be potentially applicable in everyday clinical practice. Nurses found that participation in the research project gave them confidence in the care they were already delivering and helped them to have more in-depth discussions with their patients. There was also recognition that use of the DCP may be a way to demonstrate outcomes of care:
‘I think we have been looking at, looking towards, using a tool to demonstrate the kind of, the impact we can have on patients, and we’re currently looking at what kind of tools we need to be using. So,
LEARNING POINTS w The Dignity Care Pathway (DCP) has been developed using a collaborative research approach, with community nurses and stakeholders involved at all stages. w Collaborative research has been suggested as a way to enhance knowledge transfer into practice. w Use of the DCP may be one way for community nurses to demonstrate outcomes of care in palliative care.
330
you know, happy to participate in the research to see if it’s something that we can look at later.’ (FG4-CN3)
Discussion and conclusion There have been many approaches proposed to implement research in clinical practice, although systematic evidence for the effectiveness of these remains sparse (Wallin, 2009). However, collaborative research has been advocated as one way to work towards integrated knowledge transfer (Graham, 2007) (Figure 1). In the DCP project, community nurses have been integral to the research process, including research design, pathway development, data collection, and analysis. The nurses involved in the research have had opportunities to write for publication and present at conferences. For community nurses, being involved in research requires personal commitment, motivation, and time, as well as support from management and the organisation.However, practising community nurses can make meaningful connections and contributions to generating evidence for practice. It has been demonstrated that clinical nurses who are research-active are more likely to overcome the barriers to applying research in practice (Adamsen et al, 2003). Andrew et al (2008) call for research collaboration between academic and practice-based nurses through building of communities of practice (CoP) to carry out research at local level and disseminate it at national level. Wenger (1998) describes CoP as
‘groups of people who share a concern or a passion for something they do and learn how to do it better as they interact regularly.’ However, it is also recognised that there are challenges as well as benefits which should be considered in the dynamics of academic–practitioner knowledgesharing and creation (Bartunek et al, 2003). To build successful collaboration both parties need to develop effective relationships built on mutual respect, open communication, and dialogue, and to increase their understanding of each other’s community of practice (Bartunek et al, 2003). Research implementation models such as PARiHS (Kitson et al, 2008) advocate that three characteristics should be considered: the evidence, the context, and the facilitation. In the DCP study the evidence for nursing care actions to support dignity in end-of-life care have been synthesised to provide community nurses with an assessment tool and suggWested care actions within a framework. The framework has been specifically developed with, and for use by, community nurses. The role of the clinical facilitator and the collaborative partnership with the research team has been a vital component of this project at local level, as reported in other studies (Kirkpatrick et al, 2012). Barriers to research utilisation in practice are well documented, but by involving
© 2013 MA Healthcare Ltd
others had difficulty in identifying the ‘right’ time for the patient. Some nurses felt that the use of the very structured tool hindered the natural flow of the conversation. A small number of nurses expressed worries about their capacity to respond to difficult situations that may be evoked by discussions relating to the DCP and the research:
British Journal of Community Nursing Vol 18, No 7
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 7, 2015. For personal use only. No other uses without permission. . All rights res
PALLIATIVE CARE practising community nurses at all stages of the DCP research process it is intended that the tool is grounded in clinical reality. BJCN Adamsen L, Larsen K, Bjerregarrd L et al (2003) Danish research active clinical nurses overcome barriers in research utilization. Scand J Caring Sci 17(1) 57-65 Addington-Hall J (2007) Introduction. In Addington-Hall J, Bruera E, Higginson I, Payne S, eds. Research Methods in Palliative Care. Oxford University Press Andrew N, Ferguson D, McGuiness C (2008) Promotion of a community culture in nursing research. Nurs Times 104(46) 30–3 Bartunek J, Trullen J, Bonet E et al (2003) Sharing and expanding academic and practitioner knowledge in health care. J Health Serv Res Policy 8(suppl 2):62–8 Bellman L, Webster J, Jeanes A (2011) Knowledge transfer and the integration of research, policy and practice for patient benefit. J Res Nurs 16(3):254-70 Bridges J, Meyer J (2007) Exploring the effectiveness of action research as a tool for organisational change in health care. J Res Nurs 12(4):389–99 Brown H, Ostlund U, Johnston BM (2011) Identifying care actions to conserve dignity in end-of-life care. Br J Community Nurs 16(5):238–45 Burt J, Shipman C, Addington-Hall J, White P (2008) Nursing the dying within a generalist caseload: A focus group study of district nurses. Int J Nurs Stud 45:1470–8 Chochinov H, Hassard T, McClement S et al (2008) The patient dignity inventory: A novel way of measuring dignity related distress in palliative care. J Pain Symptom Manage 36(6):559–71 Davies H, Powell A, Ward V, Smith S (2011) Supporting NHS Scotland in developing a new knowledge into action model. www.knowledge.scot. nhs.uk/media/CLT/ResourceUploads/4002569/K2A_Evidence.pdf Department of Health (2008) End of Life Care Strategy. Department of Health, London Gomes B, Calanzani N, Higginson IJ (2011) Local preferences and place of death in regions within England 2010. Cicley Saunders International. www.endoflifecare-intelligence.org.uk/resources/publications/lp_and_ place_of_death.aspx Graham ID (2007) Knowledge translation at CHIR. www.cihr-irsc. gc.ca/e/33747.html Graham ID, Logan J, Harrison MB et al (2006) Lost in knowledge translation: Time for a map? J Contin Ed Health Prof 26(1):13–24 Green LW (2008) Making research relevant: if it is an evidence-based practice, where’s the practice-based evidence? Fam Pract 25(suppl 1):i20–i45 Hilton S, Bedford H, Calnan M, Hunt K (2009) Competency, confidence and conflicting evidences: key issues affecting health visitors’ use of research evidence in practice. BMC Nurs 8(4). www.biomedcentral. com/1472-6955/8/4/ Howell D (2011) Palliative care research: urgent need for investment. Int J Pall Nurs 17(10):471 Johnston B, Ostlund U, Brown H (2012) Evaluation of the Dignity Care
Pathway for community nurses caring for people at the end of life. Int J Pall Nurs 18(10):483–9 Johnston B, Papadopoulou C, Hunter K, Andrew J, Ostlund U, Buchanan D (2013) What’s dignity got to do with it? Patient and carer experience of an end of life dignity intervention: The Dignity Care Pathway. NHS Tayside. Kennedy C, Christie J, Harbsion J et al (2008) Establishing the contribution of nursing in the community to the health of the people of Scotland: integrative literature review. J Adv Nurs 64(5):416–39 Kirkpatrick P, Wilson E, Wimpenny P (2012) Research to support evidence-based practice in COPD community nursing. Br J Community Nurs 17(10):486–92 Kitson A, Rycroft-Malone J, Harvey G, McCormack B, Seers K, Titchen A (2008) Evaluating the successful implementation of evidence into practice using the PARiHS framework: theoretical and practical challenges. Implement Sci 3(1). www.implementationscience.com/content/3/1/1 Krebbekx W, Harting J, Stronks K (2012) Does collaborative research enhance the integration of research, policy and practice? The case of the Dutch Health Broker Partnership. J Health Serv Res Policy 17(4):219–26 McKenna HP, Ashton S, Keeney S (2004) Barriers to evidence-based practice in primary care. J Adv Nurs 45(2):178–89 Newell R, Burnard P (2011) Research for Evidence-based Practice in Healthcare. 2nd edn. Wiley Blackwell, Hoboken, NJ Ostlund H, Brown H, Johnston B (2011) Dignity conserving care at end of life: a narrative review. Eur J Oncol Nurs 16(2012):353–67 Ritchie J, Spencer L, O’Conner W (2003) Carrying out qualitative analysis. In: Ritchie J, Lewis J, eds. Research Practice: A Guide for Social Science Students and Researchers. Sage, Thousand Oaks, NJ Scott K, McSherry R (2008) Evidence based nursing: clarifying the concepts for nurses in practice. J Clin Nurs 18(8):1085–95 Scottish Government (2008) Living and dying well. A national action plan for palliative and end of life care in Scotland. www.scotland.gov.uk/ Publications/2008/10/01091608/0 Scottish Government (2011) Living and dying well. Building on progress. www.scotland.gov.uk/Publications/2011/01/27090834/0 Squires JE, Estabrooks CA, Gustavsson P, Wallin L (2011) Individual determinants of research utilisation by nurses: a systematic review update. Implement Sci 6(1). www.implementationscience.com/content/6/1/1 Thompson C, McCaughan D, Cullum N, Sheldon T, Raynor P (2005) Barriers to evidence-based practice in primary care nursing: viewing decision-making as context is helpful. J Adv Nurs 52(4):432-44 Tolson D, Irene S, Booth J, Kelly TB, James L (2006) Constructing a new approach to developing evidence based practice with nurses and older people. Worldviews Evid Based Nurs 3(2):62–72 Veeramah V (2004) Utilization of research findings by graduate nurses and midwives. J Adv Nurs 47(2):183–91 Wallin L (2009) Knowledge translation and implementation research in nursing. Int J Nurs Stud 46(4):576–87 Walshe C, Luker K (2010) District nurses’ role in palliative care provision: A realist review. Int J Nurs Stud 47(9):1167–83 Wenger E (1998) Communities of Practice: Learning, Meaning and Identity. Cambridge University Press.
Would you like to write for the British Journal of Community Nursing? We provide support and advice for first-time writers and want to hear from you.
© 2013 MA Healthcare Ltd
Get in touch and we will send you a copy of our author guidelines. Phone: 020 7501 6702
Email: [email protected]
Or write to: BJCN, St Jude’s Church, Dulwich Road, London, SE24 0PB
British Journal of Community Nursing Vol 18, No 7
331
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 7, 2015. For personal use only. No other uses without permission. . All rights res
LEGAL
Community nurses’ participation in palliative care research: The Dignity Care Pathway Jane Andrew, Bridget Johnston, Constantina Papadopoulou
Jane Andrew is Practice Educator, Palliative Care Services, Dundee, NHS Tayside, UK; Dr Bridget Johnston is Reader in Palliative Care, School of Nursing and Midwifery, University of Dundee, UK; Constantina Papadopoulou is PhD Student, School of Nursing and Midwifery, University of Dundee, UK Email: [email protected]
Abstract Evidence-based practice is a cornerstone of modern health care. Ongoing challenges have been identified in the strength of the evidence base in community palliative care nursing (Walshe and Luker, 2010). This paper discusses the participation of community nurses in a palliative care research project. The Dignity Care Pathway (DCP) is an evidence-based framework developed using a collaborative research approach with community nurses in Scotland. Collaborative research has been advocated as one way to facilitate integrated knowledge transfer and to address the research–practice gap. The aim of this paper is to discuss the participation of community nurses in a collaborative research project to implement a palliative care intervention in practice. The discussion will draw on findings from the third phase of the DCP multiphase research project.
KEY WORDS
Community nursing w palliative care w dignity w collaborative research
326
the best available evidence to guide clinical practice and regarding the continuation of the research–practice gap (Squires et al, 2011). Factors that facilitate or hinder research utilisation in nursing are discussed in the literature (McKenna et al, 2004; Veeramah, 2004; Thompson et al, 2005; Hilton et al, 2009). In a recent systematic review of individual determinants of research utilisation by nurses, Squires et al (2011) reported that positive statistically significant relationships for research utilisation were found in four areas: beliefs and attitudes, information seeking, education, and professional characteristics, with attitudes towards research and current roles being highlighted.
Approaches to implementation In the recent literature there has also been discussion about approaches to implementation of evidence into practice and knowledge transfer (Wallin, 2009; Bellman et al, 2011). A number of approaches are described, including the Promoting Action on Research Implementation in Health Services (PARiHS) framework (Kitson et al, 2008) and the Knowledge to Action process (Graham et al, 2006). In a recent review of evidence on knowledge transfer, undertaken to support the development of a Knowledge to Action framework for NHS Scotland, Davies et al (2011) highlighted the spectrum of activities that can support knowledge transfer, from concrete interventions, which increase the use of specific knowledge, to the influence of cultural and organisational factors on research engagement. The integrated knowledge transfer approach described by Graham (2007), outlined in Figure 1, can be recognised in the nursing literature. Examples of collaborative research are found in community nursing (Kirkpatrick et al, 2012), acute care (Bridges and Meyer, 2007), and in nursing older people (Tolson et al, 2006). However, it is also acknowledged that clinical nurses may not feel confident or comfortable becoming involved in the research process (Andrew et al, 2008), or may not have opportunities to do so. This paper will discuss the involvement of community
© 2013 MA Healthcare Ltd
E
vidence-based practice is advocated as the cornerstone of modern health care (Newell and Burnard, 2011) and is an umbrella term that encompasses different professional perspectives, including nursing viewpoints (Scott and McSherry, 2008). Evidence-based nursing (EBN) is defined as ‘an ongoing process by which evidence, nursing theory and practitioners’ clinical experience are critically evaluated and considered in conjunction with patient involvement, to provide delivery of optimum nursing care for the individual’ (Scott and McSherry, 2008). EBN requires the generation of research evidence, the appraisal of this evidence, and the uptake and transfer of evidence into practice, which remains a challenge for nursing (Newell and Burnard, 2011). Ongoing concerns are expressed regarding the extent to which nurses use
British Journal of Community Nursing Vol 18, No 7
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 7, 2015. For personal use only. No other uses without permission. . All rights res
PALLIATIVE CARE
A research-based approach, also known as collaborative research, actionorientated research, or co-production of knowledge. Stakeholders are integrated into the entire research process, including:
w Shaping the research questions/objectives w Deciding on research methodology w Helping in data collection and tool development w Interpreting the research findings w Crafting the message and disseminating research results w Moving the results into practice. Production of research findings that are more likely to be relevant to, and used by, the end users.
nurses in a collaborative research project and give some reflections on how the process may influence knowledge transfer and implementation in practice, using the framework described by Graham (2007). Collaborative research has been described by Krebbekx et al (2012) as an approach in which ‘working in partnership, researchers and practitioners can produce research that generates academic knowledge to inform the field, as well as knowledge about ways to improve the efficiency and effectiveness of practice’. Furthermore, it has been suggested that research that involves collaboration between academics and practitioners is one way in which theorybased practice and practice-based theory may be generated and bridge the research-practice gap (Green, 2008; Krebbekx et al, 2012).
Community palliative care nursing Despite growth in palliative care nursing research over recent decades, the evidence base remains limited, and there is an ongoing need for research and investment in well-designed studies (Addington-Hall, 2007; Howell, 2011). In the UK there has been a strategic policy focus on improving the quality of care provided to people nearing the end of life with all conditions and in all care settings (Department of Health, 2008; Scottish Government, 2008, 2011), and a trend towards home being the preferred and actual place of care at the end of life (Gomes et al, 2011). Community nurses have a central role in the provision of palliative care in the home (Burt et al, 2008). However, a recent systematic review of evidence in community nursing highlighted the dearth of research evaluating the impact of community nursing actions (Kennedy et al, 2008). In palliative care, a realist review of the role of district nursing in care provision confirmed the need for research that illuminates and guides outcomes in community palliative care nursing (Walshe and Luker, 2010).
328
Dignity Care Pathway project The Dignity Care Pathway (DCP) (Figure 2) is an intervention that can be utilised by community nurses to assess and respond to dignity-related concerns with people nearing the end of life. The pathway has been developed and tested in a multiphase research project (Johnston et al, 2012, 2013). Development of the DCP has used a collaborative research approach involving groups of community nurses in Scotland who participated in the development, testing, and implementation of the pathway at all stages of the research process. w The first phase was a narrative review of the literature pertaining to dignity-conserving care at the end of life (Ostlund et al, 2011) and focus groups with patients, carers, patients and carers, community nurses, and GPs to gain context-specific evidence, and to assess whether the dignity model ‘fitted’ with nurses’ clinical practice (Brown et al, 2011). w The second phase involved the development and evaluation of the DCP. This phase included patients, carers, and community nurses in a Health Board area in northwest Scotland (Johnston et al, 2012). w The third phase, undertaken in a different Health Board area in Scotland, was the implementation of the pathway and evaluation from the perspective of patients and carers. The views of participating community nurses were also sought. Community nurses, managers, and other key stakeholders were involved in the implementation and project steering group (Johnston et al, 2013).
Community nurses’ involvement in phase three The following discussion will draw on themes that illuminate the community nurses’ experiences of participation in the third phase of the research, and illustrative quotes from the study will be provided. Focus groups were conducted at two time points during the study, before and after use of the DCP, to gather evidence on community nurses’ views on implementing the DCP. NHS and research and development approval were obtained through the East of Scotland Research Ethics Committee. The study was conducted across three community health partnerships (CHPs), which included both urban and rural populations, in the northeast of Scotland. In total, seven focus groups were conducted with 25 community nurses participating: four before the implementation of the DCP and three post-implementation. To support implementation, the nurses were provided with two half-days of education on the background and use of the pathway. Data from focus groups were analysed using framework analysis (Ritchie et al, 2003). The experience of participating in a research project was the main theme identified from the focus group data. Of the 25 community nurses involved in the project, only five mentioned having some previous research involvement. However, the opportunity to be involved in a research project was deemed to be ‘important’ and in some way
© 2013 MA Healthcare Ltd
Figure 1. Integrated knowledge translation (Graham, 2007).
British Journal of Community Nursing Vol 18, No 7
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 7, 2015. For personal use only. No other uses without permission. . All rights res
PALLIATIVE CARE ‘reassuring’ and affirming of the nursing care they were providing to patients. For some nurses it opened up their perspective on practice and supported reflection on and in action:
‘I would say I appreciated being involved in the research because it demonstrated to me that I do these things, so it reassured me that I do cover all that, so that’s why I did enjoy doing it and thinking… yeah, I’m doing this correctly’ (FG6 CN3). One factor that can be a significant influence on the successful outcome of a project is the way in which nurses gain entry to the research. Nurses were invited either by way of an introductory letter via their manager or by following information provided at a local palliative care study day. All those who participated had noted an interest in developing palliative care practice:
‘For us it was brought up at one of our team meetings; our team leader sort of picked our group out. She thought that would be quite a good step forward and we’ve always been interested in this side, the palliative care side.’ (FG2-CN3 (pre)). Two half-days of education were provided to support the study and implementation of the DCP. This allowed familiarisation with the pathway and all participants reported finding the sessions helpful. Nurses were provided with a manual summarising the intervention, the background to it, and the key papers supporting the study. The amount of information provided during the two half-days of training was described by participants as adequate:
‘I think it gave opportunity to ask questions and clear up, or clarify some things that maybe we were uncertain about, the training seemed to explain the purpose, the use, the background.’ (FG3-CN2 (pre))
© 2013 MA Healthcare Ltd
‘I don’t think there was anything lacking in the two half-days; it was adequate for what we got, information.’ (FG1-CN2 (pre)) Working with the research team during the training days supported collaborative relationships that facilitated any issues or queries that arose during the study being shared and addressed. For example, a number of nurses raised concerns about the wording ‘nearing the end of life’ used in the participant information sheets. Subsequent discussion during the project’s steering group led to the amendment of the information sheets to include ‘with advanced disease’. The project implementation was facilitated by an experienced community nurse who was well known across the area because of previous roles held as a district nurse, palliative care nurse specialist and project manager. The collaborative relationship with the research team and the facilitator proved vital to the success of the project:
British Journal of Community Nursing Vol 18, No 7
Figure 2. Dignity Care Pathway The DCP framework comprises:
w Patient Dignity Inventory (PDI) (Chochinov et al, 2008), which is used to identify dignity related issues and concerns w Reflective questions, which help to further assess identified issues and explore patients’ views and preferences w Evidence based care actions suggested for each item on the PDI w Care actions that can be evaluated by revisiting the PDI. Johnston et al, 2012, 2013
‘I actually thought it was fine, and if I did feel there was something missing I knew I would be able to phone you up and speak to you [the facilitator] about it.’ (FG4-CN1 (pre)) Nurses identified a number of practical issues relating to the research and implementation of the pathway in their routine practice. Firstly, although the pathway was potentially applicable with all patients with palliative care needs, there were concerns about identification of appropriate patients. Nurses reported that having an established rapport with the patient, knowing the patients’ understanding of their prognosis, their ability to articulate responses, and consideration of the family dynamic were the main criteria that they considered in selecting participants with whom to use the DCP. The difficulties associated with identifying prognosis in frail elderly people and patients with nonmalignant conditions, such as chronic obstructive pulmonary disease or renal failure, led the community nurses to focus mainly on cancer patients when using the DCP. The selection of patients was also influenced by the identification of those who nurses felt would be able to cope with the research element of the project, and with whom the nurse felt comfortable.
‘I chose my patients; advanced disease; they were needing quite a lot of care; they were articulate. I had already built up relationships with them both … people that I felt were comfortable with it and obviously I checked out with them prior to doing it, if it was OK.’ (FG6-CN1 (post)) The second issue was choosing the appropriate time and way to introduce the pathway and the research project. The participants in the focus groups were experienced nurses; they felt that dignity-related issues were addressed within each visit to the patients. A number of nurses introduced the pathway formally, explaining that it was part of a research project, while others felt more comfortable incorporating it into their routine practice. Due to time constraints some had difficulty introducing the pathway in a way that would not repeat previous conversations;
329
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 7, 2015. For personal use only. No other uses without permission. . All rights res
PALLIATIVE CARE
‘I was actually going to introduce a questionnaire to a lady yesterday, but when I went into the house she got quite upset, she was quite tearful, so we, I, sat and chatted but I just looked at the aide-memoire before I went in so I kind of, I didn’t actually bring out the questionnaire. I might do that today, but I just sort of incorporated some of the ideas.’ (FG3-CN1 (pre)) Lastly, the impact of service demand and time restrictions in conjunction with participating in a research project could create tensions in the management of everyday workload. The community nursing workload can be unpredictable and uncertain, especially when caring for patients who are seriously ill. Some nurses negotiated specific time within their teams in order to participate and implement the pathway; others managed to integrate the research into routine caseload work. Despite the possible challenges that may have to be considered when participating in a research project, the nurses acknowledged the merits of their involvement. As the DCP is evidence-based, it was seen as an effective way to implement evidence in practice and to bridge the perceived gap between research and practice. The Patient Dignity Inventory (Chochinov et al, 2008) assessment tool within the DCP offered the nurses a structured way to assess all dignity-related concerns.The framework could then be used flexibly to accommodate the individual needs of patients and was found to be potentially applicable in everyday clinical practice. Nurses found that participation in the research project gave them confidence in the care they were already delivering and helped them to have more in-depth discussions with their patients. There was also recognition that use of the DCP may be a way to demonstrate outcomes of care:
‘I think we have been looking at, looking towards, using a tool to demonstrate the kind of, the impact we can have on patients, and we’re currently looking at what kind of tools we need to be using. So,
LEARNING POINTS w The Dignity Care Pathway (DCP) has been developed using a collaborative research approach, with community nurses and stakeholders involved at all stages. w Collaborative research has been suggested as a way to enhance knowledge transfer into practice. w Use of the DCP may be one way for community nurses to demonstrate outcomes of care in palliative care.
330
you know, happy to participate in the research to see if it’s something that we can look at later.’ (FG4-CN3)
Discussion and conclusion There have been many approaches proposed to implement research in clinical practice, although systematic evidence for the effectiveness of these remains sparse (Wallin, 2009). However, collaborative research has been advocated as one way to work towards integrated knowledge transfer (Graham, 2007) (Figure 1). In the DCP project, community nurses have been integral to the research process, including research design, pathway development, data collection, and analysis. The nurses involved in the research have had opportunities to write for publication and present at conferences. For community nurses, being involved in research requires personal commitment, motivation, and time, as well as support from management and the organisation.However, practising community nurses can make meaningful connections and contributions to generating evidence for practice. It has been demonstrated that clinical nurses who are research-active are more likely to overcome the barriers to applying research in practice (Adamsen et al, 2003). Andrew et al (2008) call for research collaboration between academic and practice-based nurses through building of communities of practice (CoP) to carry out research at local level and disseminate it at national level. Wenger (1998) describes CoP as
‘groups of people who share a concern or a passion for something they do and learn how to do it better as they interact regularly.’ However, it is also recognised that there are challenges as well as benefits which should be considered in the dynamics of academic–practitioner knowledgesharing and creation (Bartunek et al, 2003). To build successful collaboration both parties need to develop effective relationships built on mutual respect, open communication, and dialogue, and to increase their understanding of each other’s community of practice (Bartunek et al, 2003). Research implementation models such as PARiHS (Kitson et al, 2008) advocate that three characteristics should be considered: the evidence, the context, and the facilitation. In the DCP study the evidence for nursing care actions to support dignity in end-of-life care have been synthesised to provide community nurses with an assessment tool and suggWested care actions within a framework. The framework has been specifically developed with, and for use by, community nurses. The role of the clinical facilitator and the collaborative partnership with the research team has been a vital component of this project at local level, as reported in other studies (Kirkpatrick et al, 2012). Barriers to research utilisation in practice are well documented, but by involving
© 2013 MA Healthcare Ltd
others had difficulty in identifying the ‘right’ time for the patient. Some nurses felt that the use of the very structured tool hindered the natural flow of the conversation. A small number of nurses expressed worries about their capacity to respond to difficult situations that may be evoked by discussions relating to the DCP and the research:
British Journal of Community Nursing Vol 18, No 7
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 7, 2015. For personal use only. No other uses without permission. . All rights res
PALLIATIVE CARE practising community nurses at all stages of the DCP research process it is intended that the tool is grounded in clinical reality. BJCN Adamsen L, Larsen K, Bjerregarrd L et al (2003) Danish research active clinical nurses overcome barriers in research utilization. Scand J Caring Sci 17(1) 57-65 Addington-Hall J (2007) Introduction. In Addington-Hall J, Bruera E, Higginson I, Payne S, eds. Research Methods in Palliative Care. Oxford University Press Andrew N, Ferguson D, McGuiness C (2008) Promotion of a community culture in nursing research. Nurs Times 104(46) 30–3 Bartunek J, Trullen J, Bonet E et al (2003) Sharing and expanding academic and practitioner knowledge in health care. J Health Serv Res Policy 8(suppl 2):62–8 Bellman L, Webster J, Jeanes A (2011) Knowledge transfer and the integration of research, policy and practice for patient benefit. J Res Nurs 16(3):254-70 Bridges J, Meyer J (2007) Exploring the effectiveness of action research as a tool for organisational change in health care. J Res Nurs 12(4):389–99 Brown H, Ostlund U, Johnston BM (2011) Identifying care actions to conserve dignity in end-of-life care. Br J Community Nurs 16(5):238–45 Burt J, Shipman C, Addington-Hall J, White P (2008) Nursing the dying within a generalist caseload: A focus group study of district nurses. Int J Nurs Stud 45:1470–8 Chochinov H, Hassard T, McClement S et al (2008) The patient dignity inventory: A novel way of measuring dignity related distress in palliative care. J Pain Symptom Manage 36(6):559–71 Davies H, Powell A, Ward V, Smith S (2011) Supporting NHS Scotland in developing a new knowledge into action model. www.knowledge.scot. nhs.uk/media/CLT/ResourceUploads/4002569/K2A_Evidence.pdf Department of Health (2008) End of Life Care Strategy. Department of Health, London Gomes B, Calanzani N, Higginson IJ (2011) Local preferences and place of death in regions within England 2010. Cicley Saunders International. www.endoflifecare-intelligence.org.uk/resources/publications/lp_and_ place_of_death.aspx Graham ID (2007) Knowledge translation at CHIR. www.cihr-irsc. gc.ca/e/33747.html Graham ID, Logan J, Harrison MB et al (2006) Lost in knowledge translation: Time for a map? J Contin Ed Health Prof 26(1):13–24 Green LW (2008) Making research relevant: if it is an evidence-based practice, where’s the practice-based evidence? Fam Pract 25(suppl 1):i20–i45 Hilton S, Bedford H, Calnan M, Hunt K (2009) Competency, confidence and conflicting evidences: key issues affecting health visitors’ use of research evidence in practice. BMC Nurs 8(4). www.biomedcentral. com/1472-6955/8/4/ Howell D (2011) Palliative care research: urgent need for investment. Int J Pall Nurs 17(10):471 Johnston B, Ostlund U, Brown H (2012) Evaluation of the Dignity Care
Pathway for community nurses caring for people at the end of life. Int J Pall Nurs 18(10):483–9 Johnston B, Papadopoulou C, Hunter K, Andrew J, Ostlund U, Buchanan D (2013) What’s dignity got to do with it? Patient and carer experience of an end of life dignity intervention: The Dignity Care Pathway. NHS Tayside. Kennedy C, Christie J, Harbsion J et al (2008) Establishing the contribution of nursing in the community to the health of the people of Scotland: integrative literature review. J Adv Nurs 64(5):416–39 Kirkpatrick P, Wilson E, Wimpenny P (2012) Research to support evidence-based practice in COPD community nursing. Br J Community Nurs 17(10):486–92 Kitson A, Rycroft-Malone J, Harvey G, McCormack B, Seers K, Titchen A (2008) Evaluating the successful implementation of evidence into practice using the PARiHS framework: theoretical and practical challenges. Implement Sci 3(1). www.implementationscience.com/content/3/1/1 Krebbekx W, Harting J, Stronks K (2012) Does collaborative research enhance the integration of research, policy and practice? The case of the Dutch Health Broker Partnership. J Health Serv Res Policy 17(4):219–26 McKenna HP, Ashton S, Keeney S (2004) Barriers to evidence-based practice in primary care. J Adv Nurs 45(2):178–89 Newell R, Burnard P (2011) Research for Evidence-based Practice in Healthcare. 2nd edn. Wiley Blackwell, Hoboken, NJ Ostlund H, Brown H, Johnston B (2011) Dignity conserving care at end of life: a narrative review. Eur J Oncol Nurs 16(2012):353–67 Ritchie J, Spencer L, O’Conner W (2003) Carrying out qualitative analysis. In: Ritchie J, Lewis J, eds. Research Practice: A Guide for Social Science Students and Researchers. Sage, Thousand Oaks, NJ Scott K, McSherry R (2008) Evidence based nursing: clarifying the concepts for nurses in practice. J Clin Nurs 18(8):1085–95 Scottish Government (2008) Living and dying well. A national action plan for palliative and end of life care in Scotland. www.scotland.gov.uk/ Publications/2008/10/01091608/0 Scottish Government (2011) Living and dying well. Building on progress. www.scotland.gov.uk/Publications/2011/01/27090834/0 Squires JE, Estabrooks CA, Gustavsson P, Wallin L (2011) Individual determinants of research utilisation by nurses: a systematic review update. Implement Sci 6(1). www.implementationscience.com/content/6/1/1 Thompson C, McCaughan D, Cullum N, Sheldon T, Raynor P (2005) Barriers to evidence-based practice in primary care nursing: viewing decision-making as context is helpful. J Adv Nurs 52(4):432-44 Tolson D, Irene S, Booth J, Kelly TB, James L (2006) Constructing a new approach to developing evidence based practice with nurses and older people. Worldviews Evid Based Nurs 3(2):62–72 Veeramah V (2004) Utilization of research findings by graduate nurses and midwives. J Adv Nurs 47(2):183–91 Wallin L (2009) Knowledge translation and implementation research in nursing. Int J Nurs Stud 46(4):576–87 Walshe C, Luker K (2010) District nurses’ role in palliative care provision: A realist review. Int J Nurs Stud 47(9):1167–83 Wenger E (1998) Communities of Practice: Learning, Meaning and Identity. Cambridge University Press.
Would you like to write for the British Journal of Community Nursing? We provide support and advice for first-time writers and want to hear from you.
© 2013 MA Healthcare Ltd
Get in touch and we will send you a copy of our author guidelines. Phone: 020 7501 6702
Email: [email protected]
Or write to: BJCN, St Jude’s Church, Dulwich Road, London, SE24 0PB
British Journal of Community Nursing Vol 18, No 7
331
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 7, 2015. For personal use only. No other uses without permission. . All rights res
