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2014 MA Healthcare Ltd Service development Establishing a nurse practitioner collaborative: evolution, development, and outcomes Karen Quinn, Peter Hudson T he advanced clinical practice role of the nurse practitioner (NP) has been well established in North America for several decades and across a range of specialties (Ryan- Woolley et al, 2007; Poghosyan et al, 2012). The NP role in Australia and the UK is a relatively new initiative that commenced in the early 2000s (Gardner et al, 2009). There are over 1000 NPs across all states and territories of Australia, of whom approximately 130 work in the state of Victoria (Victorian Government Health Information, 2012). Australian NPs work across a range of specialties, including palliative, emer- gency, older person, renal, cardiac, respiratory, and mental health care. There has been increasing focus nationally and internationally on developing academic pro- grammes specifically for nurses working toward NP status (Gardner et al, 2006). There has been less emphasis on identifying the comprehensive clinical support requirements for NPs and NP candidates (NPCs) to ensure they meet all regis- tration requirements to achieve and/or maintain endorsement, or on articulating the ongoing requirements for NPs once endorsed. Historically in Australia there has been a lack of clarity and limited published evidence on the benefits of the NP role for patients, carers, and health services (Quaglietti et al, 2004; Gardner and Gardner, 2005; Bookbinder et al, 2011; Dyar et al, 2012). An NP is considered to be at the apex of clinical nursing practice. The NP role typically entails comprehensively assessing and managing patients, prescribing medicines, making direct referrals to other specialists and services, and ordering diagnostic investigations (Australian Nursing and Midwifery Council, 2009). All NPs in Australia are required to meet the following generic criteria: be a registered nurse, have completed a Nursing and Midwifery Board of Australia approved postgraduate university Master’s (nurse practitioner) degree programme, and be able to demonstrate a minimum of 3 years’ experience in an advanced practice role Abstract The first Australian palliative care nurse practitioner (NP) was endorsed in 2003. In 2009 the Victoria Department of Health funded the development of the Victorian Palliative Care Nurse Practitioner Collaborative (VPCNPC). Its aim was to promote the NP role, develop resources, and provide education and mentorship to NPs, nurse practitioner candidates (NPCs), and health service managers. Four key objectives were developed: identify the demographic profile of palliative care NPCs in Victoria; develop an education curriculum and practical resources to support the training and education of palliative care NPCs and NPs; provide mentorship to NPs, NPCs, and service managers; and ensure effective communication with all key stakeholders. An NPC survey was also conducted to explore NPC demographics, models of care, the hours of study required for the role, the mentoring process, and education needs.This paper reports on the establishment of the VPCNPC, the steps taken to achieve its objectives, and the results of the survey.The NP role in palliative care in Australia continues to evolve, and the VPCNPC provides a structure and resources to clearly articulate the benefits of the role to nursing and clinical services. Key words: Nurse practitioner • Collaborative • Palliative care Advanced nursing • Education (Nursing and Midwifery Board of Australia, 2011). An NPC in Victoria is a registered nurse employed by a service or organisation to work toward meeting the academic and clinical require- ments for national endorsement as an NP. During the period of candidacy, which is of variable dura- tion, NPCs consolidate their competence to work at the advanced practice level of an NP. The can- didacy period is a process of learning the new role while engaging with mentors (medical and nurs- ing) and accessing other learning opportunities both within and outside one’s organisation to meet the educational requirements. Integral to the NP role is the development of a model of care that is responsive to identified service delivery gaps that can be addressed by the skills, knowl- edge, and expertise of an NP. These are unique to each individual service. The practice of an Karen Quinn, Coordinator— Education, Centre for Palliative Care; Project Officer, Victorian Palliative Care Nurse Practitioner Collaborative, PO Box 2900, St Vincent’s Hospital Melbourne, Australia; Peter Hudson, Director, Centre for Palliative Care, St Vincent’s Hospital Melbourne; Professor of Palliative Care, Queens University, Belfast, Northern Ireland Correspondence to: Karen Quinn karen.quinn@ svhm.org.au International Journal of Palliative Nursing 2014, Vol 20, N o 9 4S7

Establishing a Nurse Practitioner Collaborative- Evolution, Development, And Outcomes

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    Establishing a nurse practitioner collaborative: evolution, development,

    and outcomesKaren Quinn, Peter Hudson

    The advanced clinical practice role of the nurse practitioner (NP) has been well established in North America for several decades and across a range of specialties (Ryan- Woolley et al, 2007; Poghosyan et al, 2012). The NP role in Australia and the UK is a relatively new initiative that commenced in the early 2000s (Gardner et al, 2009). There are over 1000 NPs across all states and territories of Australia, of whom approximately 130 work in the state of V ictoria (Victorian Governm ent Health Information, 2012). Australian NPs work across a range of specialties, including palliative, emergency, older person, renal, cardiac, respiratory, and mental health care.

    There has been increasing focus nationally and internationally on developing academic programmes specifically for nurses working toward NP status (Gardner et al, 2006). There has been less emphasis on identifying the comprehensive clinical support requirements for NPs and NP candidates (NPCs) to ensure they meet all registration requirements to achieve and/or maintain endorsement, or on articulating the ongoing requirements for NPs once endorsed.

    Historically in Australia there has been a lack of clarity and limited published evidence on the benefits of the NP role for patients, carers, and health services (Quaglietti et al, 2004; Gardner and Gardner, 2005; Bookbinder et al, 2011; Dyar et al, 2012). An NP is considered to be at the apex of clinical nursing practice. The NP role typically entails comprehensively assessing and managing patients, prescribing medicines, making direct referrals to other specialists and services, and ordering diagnostic investigations (Australian Nursing and Midwifery Council, 2009).

    All NPs in Australia are required to meet the following generic criteria: be a registered nurse, have completed a Nursing and Midwifery Board of Australia approved postgraduate university Masters (nurse practitioner) degree programme, and be able to demonstrate a minimum of 3 years experience in an advanced practice role

    AbstractThe firs t Australian palliative care nurse p rac titione r (NP) was endorsed in 2003. In 2009 the Victoria Department of Health funded the development of the Victorian Palliative Care Nurse Practitioner Collaborative (VPCNPC). Its aim was to promote the NP role, develop resources, and provide education and m entorship to NPs, nurse practitioner candidates (NPCs), and health service managers. Four key objectives were developed: identify the demographic pro file o f palliative care NPCs in Victoria; develop an education curriculum and practical resources to support the training and education o f palliative care NPCs and NPs; provide mentorship to NPs, NPCs, and service managers; and ensure e ffective com m un ica tion w ith all key stakeholders. An NPC survey was also conducted to explore NPC demographics, models of care, the hours of study required for the role, the mentoring process, and education needs.This paper reports on the establishm ent o f the VPCNPC, the steps taken to achieve its objectives, and the results of the survey.The NP role in palliative care in Australia continues to evolve, and the VPCNPC provides a structure and resources to clearly articulate the benefits of the role to nursing and clinical services.Key words: Nurse practitioner Collaborative Palliative care Advanced nursing Education

    (Nursing and Midwifery Board of Australia, 2011). An NPC in Victoria is a registered nurse employed by a service or organisation to work toward meeting the academic and clinical requirements for national endorsement as an NP. During the period of candidacy, which is of variable duration, NPCs consolidate their competence to work at the advanced practice level of an NP. The candidacy period is a process of learning the new role while engaging with mentors (medical and nursing) and accessing other learning opportunities both within and outside ones organisation to meet the educational requirements. Integral to the NP role is the development of a model of care that is responsive to identified service delivery gaps that can be addressed by the skills, knowledge, and expertise of an NP. These are unique to each individual service. The practice of an

    Karen Quinn,Coordinator Education, Centre for Palliative Care; Project Officer, Victorian Palliative Care Nurse Practitioner Collaborative, PO Box 2900, St Vincents Hospital Melbourne, Australia; Peter Hudson, Director, Centre for Palliative Care, St Vincents Hospital Melbourne; Professor of Palliative Care, Queens University, Belfast, Northern Ireland

    Correspondence to: Karen Quinn karen.quinn@ svhm.org.au

    International Journal o f Palliative Nursing 2014, V o l 20, N o 9 4S7

  • Service development

    T a b le 1. A c t io n s a n d o u tc o m e s r e la te d to V P C N P C o b je c tiv e s

    Objective Action O utcom e

    Identify the

    demographic profile

    and learning and

    mentorship needs of Survey distributed

    7 o f 13 NPCs responded

    Majority aged 40-50 years

    Mean o f 1 1 years o f palliative care

    experience

    *> Over half o f NPCs are full-time NPCs

    NPCs enrolled in Masters courses

    allocate 20-27 hours/week o f own

    time to study

    Majority review patients in aged care

    palliative ca*e NPCs to NPCs in facilities

    in V ictoria V ictoria Clearly identified learning needs

    Develop an

    education curriculum

    and practical

    resources to support Lead quarterly

    Professional networking opportunities

    Avenue fo r sharing experiences and

    concerns

    a Case study presentation opportunities

    the training and forums Palliative Care NP Clinical

    education c f Identify ongoing Competencies

    palliative ca-e NPCs learning e Palliative Care NP Symptom

    and NPs resource needs Assessment Guide

    Provide mentorship

    to NPs, NPCs, and Appoin t mentors

    Position descriptions developed

    Regular evaluation of number and

    service maragers fo r each group nature o f enquiries

    Ensure effective

    Develop website

    Consider other

    Website acts as repository fo r resources

    Regular e-newletters to all members

    Special interest group for NPs and NPCs

    communication w ith communication Online discussion forum

    all key stakeholders strategies Map o f NPs and NPCs

    NPC, nurse practitioner candidate; NP, nurse practitioner;VPCNPC,Victorian Palliative

    Care Nurse Practitioner Collaborative

    Australian NP is guided by national standard; {Nursing and Midwifery Board of Australia 2014). It is defined by four overarching standards: clinical, education, research, and leadership.

    Following the initial endorsement of four Victorian palliative care NPs in 2005, there was a lull in recruitment. The Victoria Department of Health (DH) recognised the potential benefits of NPs for health services, and in 2008 it provided funding for Victorian public health services to scope palliative care NP models of care that could enhance service delivery and patient outcomes. The scoping strategy was effective and led to the appointment of 16 palliative care nurses to NPC positions over the ensuing 3 years. The NPC; work across a broad range of care settings, including inpatient, community, and outpatient in metropolitan, regional, and rural areas of Victoria.

    At the same time, the DH also funded the Centre for Palliative Care to establish the Victorian Palliative Care Nurse Practitioner Collaborative (VPCNPC) to support the NPs and NPCs. The Centre is a state-wide service that i; part of St Vincents Hospital Melbourne and a

    collaborative Centre of the University of Melbourne. Its primary function is to provide training and conduct research in palliative care. The purpose of the VPCNPC was to provide support and mentorship and develop resources targeted at palliative care NPs, NPCs, and health service managers. Membership of the VPCNPC is open to all NPs, NPCs, health service managers, and nurses interested in the NP role.

    The aim of this paper is to describe the development of the VPCNPC, its actions, and the outcomes of these actions.

    Development of the VPCNPCThe initial step for the VPCNPC was to establish a governance structure, which included appointing a management committee to oversee and provide advice on all activities. Key stakeholders were invited onto the management committee, which went on to comprise a representative from the DH, an experienced palliative care NP engaged as a clinical advisor, a clinical health service manager, a community palliative care service representative, a palliative care physician, an academic, and a project officer.

    The management committee developed four objectives to inform the strategic direction of the VPCNPC and guide its activities: Identify the demographic profile, including the

    learning and mentorship needs, of palliative care NPCs in Victoria

    Develop an education curriculum and practical resources to support the training and education of palliative care NPCs and NPs

    Provide mentorship to NPs, NPCs, and service managers

    Ensure effective communication with all key stakeholders.

    Actions and outcomesTable 1 provides a summary of actions and outcomes related to each of the four objectives.

    Demographic profile and learning and mentor needs of palliative care NPCs in VictoriaA survey was developed by the VPCNPC management group to determine the demographic profile of palliative care NPCs, the range and diversity of NPC models of care across Victoria, the hours of study required for the role, mentoring arrangements, and NPC education needs. The survey received ethical approval from St Vincents Hospital Melbourne and was mailed to the 13 current NPCs. Seven NPCs completed the survey.

    Three of the seven NPCs were male and five were 40-50 years of age. They had been regis-

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    tered nurses for 13-33 years (mean 22 years) and had been working in palliative care for 4-19 years (mean 11 years). Four candidates held postgraduate qualifications other than NP Masters degrees. Four candidates had completed their NP Masters degrees and three were working toward them. Four candidates worked full-time in their NPC role and three part-time. These three combined their part-time NPC role with either a clinical nurse consultant role or quality assurance project activities. Four NPCs worked in inpatient settings and three in community settings.

    NPCs who were completing their NP Masters degrees were devoting 20-27 hours per week of their own time to study. NPCs who had completed their NP M asters committed 3-5 hours per week. In terms of professional development in paid working hours, three candidates were not allocated any hours for work-related study; the remainder were allocated 1-10 hours per week.

    Four NPCs were able to provide a clear description of their model of care, which included responsibility for complex symptom management across a range of settings. Three said their model was in development. The four models described all involved enhancing patient or client access to services and symptom review in residential aged care settings.

    All seven NPCs had identified medical mentors. Five stated that there was no formal process to the medical mentor meetings, while two reported that the meetings were structured around case study discussions or informed by clinical experience since the previous meeting. Two NPCs reported having an identified nursing mentor, but neither had a structured approach to the meeting schedule or format. Five candidates were not able to identify a mentor who could provide clinical leadership and professional support to the new NPC role.

    Education needs identified by the NPCs included development of skills in conference presentations and preparing conference abstracts (=3); conducting mental health assessments and learning about cardiac, respiratory, and neurological illnesses, pathology, and diagnostics (n=6); development of clinical assessment skills (n=3); leadership (=2); and opportunities for placement in specialist areas including mental health, chronic disease, and a palliative care setting different to their own (=4).

    Curriculum and practical resources to support the training and education of palliative care NPCs and NPsQuarterly 6-hour forums were established as a face-to-face opportunity for NPs and NPCs to network with each other, share experiences and

    Box I.VPCNPC education curriculum top cs

    End-stage ion-malignant diseases, including cardiac, renal, and respiratory

    Conducting a mental health assessment

    Conducting a physical assessment

    Leadership in palliative care

    Management skills in palliati/e care

    Literature searching skills

    Research considerations

    Teaching a- d learning sty as

    Palliative c are and adolescent issues

    e Advance care planning

    Requirements to r prescribing

    Preparing and presenting case studies

    Understand rg the role o f a m entor

    Interpreting abdom nal and chest X-rays

    Ethical challenges in palliative care

    Preparing fc r pub ic it io r and dissemination

    Supportive decision making from theory to practice

    challenges, participate in education, and present and discuss clinical case studies. At each forum the attendees are invited to identify their learning needs. The responses so far have been collated and an education strategic plan has been developed. The plan focuses on ensuring education is clinically relevant and complements the academic courses undertaken by NPCs (focusing primarily on the specialty of palliative care practice) as well as on compiehensively evaluating all education and related activities.

    Invitations to attend the forums are circulated widely to padiative care N?s, NPCs, nurses interested in the NP role, and health service managers. As a means of meeting the education needs identified in objective 1, education sessions are considered a critical component of each forum. Participants are encouraged to prov.de feedback on each of "he forums. Responses so far were collated and formed the oasis of a curriculum tBox 1). Eaca forum features a case presentation and discuss.on led by one of the NPCs. The forums provide a unique opportunity for peer support among the NPs. NPCs, and service managers and enable them t:> practice their presentation sk ills and learn from each o th e rs experiences. As the NP role incorporates leadership and teaching as well as advanced practice, the education sessions include workshops on leadership, management, teaching strategies, literature search.ng, and publication advice.

    The NPCs consistently reported via forum evaluation reedback that they were seeking a framework t.aat would provide indicators of how to achieve the NP clinical competency standards. The VPCNFC therefore established a core writing group, consisting of academics, an NP, and a palliative cere nurse to develop Padiative Care NP Clinical Competencies During the consultation process it was agreed that the final document would reference and link with each of the National NP Competency Standards and include key performance indicators and assessment prin-

    International Journal o f Palliative Nursing 2014, Vol 20, No 9 4S9

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    ciples that would provide evidence of competence. All members of the VPCNPC were invited to review the first draft, which was then refined. National and international NPs, palliative care physicians, policy developers, academics, and a pharmacist were invited to review the second draft. Based on the feedback, the draft was further refined to the final version of the Palliative Care NP Clinical Competencies. The document is available via the Centre for Palliative Care website (www.centreforpallcare.org.au).

    With the aim of providing NPs and NPCs with a guide to conducting patient symptom assessment, a second document was developed based on a similar approach to the competencies. The Palliative Care NP Symptom Assessment Guide is also available via the Centre for Palliative Care website.

    Mentorship for NPs, NPCs, and service managersMentorship is key to supporting NPCs, NPs, and clinical service managers as they embed the NP role into a service. Informed by consultation with experienced palliative care clinicians in the VPCNPC, three specific mentor roles were developed for medical, nursing, and palliative care service manager advisors.

    The medical advisor was an experienced specialist palliative care physician whose primary focus was on providing advice for rural palliative care NP services, which may not have regular access to a palliative care doctor. In addition, the role incorporates working with metropolitan services to support the NP.

    The nurse advisor was an endorsed palliative care NP who provided professional support and advice to rural and metropolitan NP services and NPCs via phone or email. The nurse advisor assisted NPs and NPCs to identify and implement their professional development plans and promoted networking with providers of palliative care services. They also assisted in developing and implementing guidelines and policies specific to the NP role.

    The clinical service advisor was a manager of a community palliative care service that employed an NP and was therefore familiar with the NP role and the process of embedding it in a service. The service manager responded to queries (usually by phone or email) from service managers considering an NP or NPC role.

    A review of the number of interactions, the approximate time taken, and the nature of enquiries for the medical, nursing, and service manager mentors was routinely conducted at each of the quarterly management meetings. This monitored the demand for mentorship and ensured it was

    sustainable over time and not burdensome to the mentors. Mentor enquiries primarily related to seeking clarification about the NP role and how best to source face-to-face clinical mentoring when it was not readily available in their service. The mentors provided advice and recommendations for ensuring NP and NPC needs were met.

    Effective communication with all key stakeholdersEffective communication was vital to ensuring consistency and regular access to all relevant information regarding VPCNPC activities. The communication strategy included the following: Development of a VPCNPC website (http://

    centreforpallcare.org/index.php/education/vpc- npc) that is regularly updated with information and resources relevant to health services, NPs, NPCs, and nurses interested in finding out more about the NP role

    0 Development of an e-newsletter with updates on upcoming activities

    Formation of a special interest discussion group for NPs and NPCs

    0 Establishment of an online forum for NPs and NPCs to share experiences and peer support

    0 Collation of NP and NPC details including a description of each model of care, contact details, and proposed date for NPCs to achieve endorsement that are shared with all NPCs (with permission)

    0 Presentation of VPCNPC updates regularly at relevant conferences

    0 Development of a map of palliative care NP and NPC locations in Victoria (accessed via the VPCNPC website).

    DiscussionThe total number of Victorian NPs and NPCs has steadily increased since the inception of the VPCNPC in 2009, when there were four NPs and two NPCs. Although there are still few palliative care NPs (currently 11) and NPCs (also 11) in Victoria, there is increasing interest in the role from nurses and clinical health services.

    All NPCs have been offered NP roles with the same organisation in which they were a candidate, once they have met all the requirements and been endorsed as an NP. This suggests that the clinical services were satisfied with the value that the advanced practice NP role could add to patient and carer outcomes.

    The next steps for the VPCNPC include formally evaluating the experiences of clinical services that employ NPs and NPCs in terms of benefits and cost-effectiveness. Given that several nurses have now been working as NPs in excess

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    of 2 years, it would be useful to explore their experiences and recommendations for the benefit of all nurses interested in the role.

    The activities of the VPCNPC have been guided and informed by the four objectives developed by the management group and by the needs identified by the VPCNPC members. For example, the evaluations undertaken at each of the quarterly forums have informed a curriculum to meet the learning needs of palliative care NPs and NPCs. The curriculum was further enhanced by the results of the NPC survey. All VPCNPC education is evaluated by the participants, and the education programmes were reviewed based on the feedback responses.

    All members of the collaborative value the opportunity for collegial interaction via a range of strategies, including face-to-face meetings, the website, peer contact, focused education sessions, and resources developed specifically to meet their needs. One useful aspect of the regular forums is the opportunity to discuss experiences with other NPs and NPCs. Time in each forum is allocated to collegial discussion (led by an experienced NP) and sharing of strategies to problem-solve issues of concern that would not necessarily be identified in a formal education session.

    The resources developed by the VPCNPC, including the Palliative Care NP Clinical Competencies and Assessment Guide, have been informally evaluated as being useful to NPs and NPCs and are freely available to all nurses interested in exploring the NP role. A future project will formally evaluate and revise these resources.

    The information and resource needs of the clinical service managers continue to emerge as the managers become more familiar with the NP role. A resource kit for clinical services could be a valuable tool. This could include examples of effective models of care developed by other services, questions for services to consider to inform the need for an NP, clear articulation of the role and the responsibilities of the service in supporting NPs and NPCs, contact details for service managers willing to engage with and mentor services new to the role, and strategies to implement access to services (e.g. radiology and pathology) not otherwise available.

    Despite being strongly recommended, regular structured nursing and medical mentorship were not always accessible to the NPs and NPCs surveyed. Mentoring also varied between NPs and NPCs. Therefore, services are encouraged to think creatively about ways to respond to NPCs learning needs. There is a need for increased clarity about the role of clinical mentorship, the process, and mentor responsibilities regarding NPC clinical competency assessment.

    The NPC survey was limited by the small sample size, and therefore the results and recommendations are not necessarily transferable to a wider cohort. Repeating the survey with a larger sample, perhaps involving all NPCs and NPs regardless of their specialty area of practice, may help to determine whether needs vary across the groups.

    ConclusionThe VPCNPC has continued to evolve and grow as NPs, NPCs, and clinical service managers become more familiar with the requirements and responsibilities of supporting nurses to achieve NP competency. It has developed a model and structured education curriculum and resources that respond to the unique needs of palliative care NPs, NPCs, and clinical service managers. Further research is required to evaluate the benefits of the NP to the key stakeholderspatients, carers, health professionals, and clinical services, ijpn

    Declaration o f interestsThe VPCNPC is funded by the Department o f Health Victoria. The authors have no conflicts o f interest to declare.

    Australian Nursing and Midwifery Council (2009) Registered Nurses. Standards and Criteria for the Accreditation o f Nursing and Midwifery Courses Leading to Registration, Enrolment, Endorsement and Authorisation in Australia with Evidence Guide. http://bit.lvA/eZXBT (accessed 11 August 2014)

    Bookbinder M, Glajchen M, McHugh M et al (2011) Nurse practitioner-based models of specialist palliative care at home: sustainability and evaluation of feasibility. J Pain Symptom Manage 41(1): 25-34

    Dyar S, Lesperance M, Shannon R, Sloan J, Colon-Otero G (2012) A nurse practitioner directed intervention improves the quality of life of patients with metastatic cancer: results of a randomized pilot study. J Palliat Med 15(8): 890-5. doi: 10.1089/jpm.2012.0014

    Gardner A, Gardner G (2005) A trial of nurse practitioner scope of practice. ] Adv Nurs 49(2): 135M5

    Gardner G, Dunn S, Carryer A, Gardner A (2006) Competency and capability: imperative for nurse practitioner education. Aust ] Adv Nurs 24(1): 8-14

    Gardner A, Gardner GE, Middleton S, Della PR (2009) The status of Australian nurse practitioners: the first national census. Aust Health Rev 33(4):679-89

    Nursing and Midwifery Board of Australia (2011) Guidelines on endorsement as a nurse practitioner. http://bit. lv/lA72VIq (accessed 11 August 2014)

    Nursing and Midwifery Board of Australia (2014) FAQ: Nurse practitioner standards for practice. http://bit. lv/loW7PE4 (accessed 11 August 2014)

    Poghosyan L, Lucero R, Rauch L, Berkowitz B (2012) Nurse practitioner workforce: a substantial supply of primary care providers. Nurs Econ 30(5): 268-74, 294

    Quaglietti S, Blum L, Ellis V (2004) The role of the adult nurse practitioner in palliative care. J Hosp Palliat Nurs 6(4): 209-14

    Ryan-Woolley BM, McHugh GA, Luker KA (2007) Prescribing by specialist nurses in cancer and palliative care: results of a national survey. Palliat Med 21(4): 273-7

    Victorian Government Health Information (2012) NP Candidates. www.health.vic.gov.aii/nursing/furthering/practi- tioner/np-candidates (accessed 11 August 2014)

    International journal o f Palliative Nursing 2014, Vol 20, No 9 461

  • Research roundup

    Synopses o f a selection o f recently pub lished research artic les o f relevance to p a llia tive care.

    Measuring Belgian palliative care services on national and international scales In recognition of the importance of evaluating palliative care services in a standardised and valid format, Leemans et al produced a comprehensive set of quality indicators against which to measure palliative care services across Belgium. This mixed-methods study combines quantitative analysis and qualitative interviews to evaluate the quality indicators for their face validity, feasibility, discriminative power and usefulness.

    There were 85 quality indicators across nine quality domains relating to standards in physical, psychological and social treatment and care, coordination and continuity of care, family and carer support, information, communication and decision making, and type and structure of care at the end of life. These indicators were implemented across nine palliative care services across Belgium, and then measured via questionnaire, and subsequently interview, by a sample of patien ts (n=l 16), professional caregivers (n= 121), family carers (n = 193), and physicians (n=192). The response rate was highest for professional caregivers (97%), followed by physicians (65%), then patients (56%) and family carers (56%).

    Five (5.9%) of the indicators were evaluated as not being useful for quality improvement and 20 (23.5%) had too many missing answers, i.e. feasibility issues. O ther than this, indicators appeared to be evenly distributed, dem onstrating good discriminative power. They were also evaluated as being valid in terms of measuring the relevant quality. Results indicated that most respondents found the instrument im portant and useful, but felt that the set of quality indicators should be smaller, while remaining comprehensive.

    In response to the results, one indicator was removed, and the rest were revised accordingly. The new set is ready for evaluation and the authors hope that once it is complete and in

    systematic use across Belgium, it will be used to evaluate palliative care services at home and in hospital against national and international standards, continually improving them to achieve higher quality care for patients and their families at the end of life. However, the authors note the need for both researchers and policy makers to further investigate and identify the optimal circumstances for quality comparison.

    Leemans K, Deliens L, Francke AL, Stichele RV, Van den Block L, Cohen J (2014) Quality indicators for palliative care services: mixed-method study testing for face validity, feasibility discriminative power and usefulness. Palliat Med 2 September [Epub ahead of print] doi: 10.1177/0269216314546712

    Conducting transparent and ethical research in resource-restricted settings: a Kenyan evaluation Since the widespread availability of antiretroviral (ART) therapy in sub- Saharan Africa, no evidence has been collected to evaluate a holistic model of palliative care for HIV-positive patients receiving this treatment. To determine the effectiveness of a nurse-led palliative care approach for this patient group, Lowther et al conducted a randomised controlled trial (RCT) in an urban clinic in Mombasa, Kenya. The results of the trial will be published at a later date. This article presents detailed data relating to the recruitment process, refusal to participate, randomisation and missing data in this study in the interest of transparent reporting, which, the authors note, is particularly important in cross- cultural settings and when conducting research with vulnerable populations.

    Over 5.5 months, 2070 patients were screened. Inclusion criteria specified adult HIV-positive patients who had been on ART for more than 1 month. Of those deemed to be eligible (1664/2070; 80.4% ), 151 (55.7% ) refused to participate and 120 (44.3%) consented. The intervention consisted of at least seven multidimensional, person-centred sessions with a trained nurse over a period of 4 months. Data were collected via interview at baseline, and study

    participants (n=120), who were recruited consecutively from the HIV clinic at the study site, were then allocated to either a control (n=60) or intervention group (n=60), using block randomisation.

    Participants in the control group received standard HIV care according to current best practice: assessment by doctors and/or nurses, repeat prescriptions of ART, referrals to adherence support for ART and other nutrition or community support referrals as appropriate. The intervention group received the same standard care; however, they also received additional sessions with the HIV nurses who were trained over 8 weeks in the palliative care approach by the Kenyan Hospice and Palliative Care Association.

    The authors, based in the UK and Kenya, concluded that it is possible to ethically conduct an RCT in a resource- limited setting. Their findings indicate tha t recruitm ent procedures were appropriate, missing data were minimal and low participant attrition indicates the clarity of the informed consent process and the authors commitment to ethical recruitment procedures.

    The authors hope that researchers continue to transparently report their experiences and that this publication will be used to inform further RCTs in this area of study.

    Lowther K, Higginson IJ, Simms V et al (2014) A randomised controlled trial to assess the effectiveness of a nurse-led palliative care intervention for HIV positive patients on antiretroviral therapy: recruitment, refusal,randomisation and missing data. BMC Research Notes 7(600): 1-10

    UK researchers examine the scope and breadth of social media platforms to discuss end-of-life care In light of the increasingly open dialogue, particularly online, around death and dying, Nwosu et al from the UK conducted a retrospective analysis over 2 years to analyse its frequency, content, tone and acceleration. Between 1 August 2011 and 31 July 2013, social media analytics tool, TopsyPro, was used to identify and analyse tweets on

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    Twitter containing palliative care terms in the forms of hashtags or phrases.

    Some 13 palliative care terms were identified from a total of 683.5K tweets over a 2-year period. The most popular terms were end of life (210K) and palliative care (93.8K) and the most popular hashtag (#) was #hpm (114K) (hospice and palliative medicine). In terms of acceleration or trending, the term Liverpool Care Pathway spiked by 55%, peaking in July 2013, as might be expected with the independent review being published that month.

    Tweet volume for all palliative-related terms increased considerably by 62.3% between the 2011-12 and 2012-13 time points. TopsyPro allows for analysis of how positive or negative the sentiment of selected tweets are in relation to the o ther tweets posted tha t day. Interestingly, 89% of palliative terms were classified as more positive than all of the terms mentioned on Twitter during the 2-year study period.

    The greatest volume of relevant tweets appeared to be sent from English- speaking countries, with 58.1% from the USA, 21.8% from the UK and 6.6% from Canada. However, as only English search terms were included in the analysis, potentially relevant terms in other languages were likely missed, as acknowledged by the authors.

    The authors concluded that not only are discussions about the end of life on the rise in volume and frequency, but they are largely positive. This signals a gradual shift from the taboo perception of discussions around death, dying and end-of-life care toward a more open acceptance of this subject.

    The authors suggest th a t social media tools, such as Twitter, provide a novel platform for ongoing dialogue in end-of-life care, both personally and professionally, and recommend further qualitative and quantitative analysis of the impact of this digital discussion on engaging wider society.

    Nwosu AC, Debattista M, Rooney C, Mason S (2014) Social media and palliative medicine: a retrospective 2-year analysis of global twitter data to evaluate the use of technology to communicate about issues at the end of life. BMJ Support Palliat Care 2 September [Epub ahead of print] doi:10.1136/

    bmjspcare-2014-000701

    The efficacy of the Liverpool Care Pathway in the Netherlands: barriers and facilitators Although the Liverpool Care Pathway (LCP) was recently replaced in the UK following concerns about the tick-box nature of its use, its original aim in the 1990s was to transfer the gold standard of care provided in UK hospices to other settings in which dying patients receive care. Raijmakers et al conducted a qualitative study to investigate its efficacy in the Netherlands, where it was introduced in 2001.

    Telephone interviews were conducted with 28 stakeholders involved with the implementation of the LCP in the Netherlands. These included consultants from the Com prehensive Cancer Centre of the Netherlands (CCCN), palliative care network coordinators and project leaders of the organisations im plem enting the LCP. The LCP is in place in over 100 health-care organisations in the Netherlands. The CCCN consultants, who were asked to identify organisations that successfully implemented the pathway, mentioned a total of 25 organisations, 10 of which were selected to guarantee a variety of geographical regions and organisational settings. Subsequendy, consecutive focus groups, led by an experienced moderator, were held with eight interviewees to discuss and validate the findings from the interviews. All transcripts from both interviews and focus groups were then transcribed and thematically analysed.

    In a d d itio n to the essen tia l com ponent of ensuring m otivated health professionals and management to drive the improvement of end-of-life care, the authors identified facilitators for successful im plem entation of an instrum ent such as the LCP as being: quality and completeness of the instrument, a multidisciplinary project team, and liaison with important parties within and outside the organisation in which it is being implemented. However, the authors also recommended that tasks be disentangled from the project leader and formally integrated into organisational quality systems.

    Raijmakers N, Dekkers A, Galesloot C, van Zuylen L, van der Heide A (2014) Barriers and facilitators to implementation of the Liverpool

    Care Pathway in the Netherlands: a qualitative study. BMJ Support Palliat Care 8 September [Epub ahead of print] doi:10.1136/ bmjspcare-2014-000684

    Predicting the survival of advanced cancer patients via levels of consciousness in Taiwan To improve the accuracy of prognoses given to patients at the end of life, Tsai et al conducted a prospective observational study to assess the ability of levels of consciousness to predict the survival of advanced cancer patients, as a deterioration of consciousness has been reported near death.

    Patients (n=531) were recruited from a palliative care unit in Taiwan and their status on admission and 1 week later were recorded as either normal or impaired. Of the 531 patients, 60% (n=317) were recorded to have normal levels of consciousness at admission. These patients were found to have a longer survival time than the remaining 40% (n=214) who were deemed to have impaired consciousness at admission (17.0 days versus 6.0 days, p

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