Article
District nurse advocacy for choice to live and die at home in rural Australia: A scoping study
Nursing Ethics 2015, Vol. 22(4) 479–492 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014538889 nej.sagepub.com
Frances M Reed, Les Fitzgerald and Melanie R Bish La Trobe University, Australia
Abstract Background: Choice to live and die at home is supported by palliative care policy; however, health resources and access disparity impact on this choice in rural Australia. Rural end-of-life home care is provided by district nurses, but little is known about their role in advocacy for choice in care. Objectives: The study was conducted to review the scope of the empirical literature available to answer the research question: What circumstances influence district nurse advocacy for rural client choice to live and die at home?, and identify gaps in the knowledge. Method: Interpretive scoping methodology was used to search online databases, identify suitable studies and select, chart, analyse and describe the findings. Results: 34 international studies revealed themes of ‘the nursing relationship’, ‘environment’, ‘communication’, ‘support’ and ‘the holistic client centred district nursing role. Discussion: Under-resourcing, medicalisation and emotional relational burden could affect advocacy in rural areas. Conclusion: It is not known how district nurses overcome these circumstances to advocate for choice in end-of-life care. Research designed to increase understanding of how rural district nurses advocate successfully for client goals will enable improvements to be made in the quality of end-of-life care offered. Keywords Advocacy, community, district nursing, end-of-life, holistic, palliative
Introduction and background In Australia, there is a preference to live the last part of life and die at home.1–3 Despite this, inpatient admissions for palliative care are rising,4 and the majority of Australians die in hospital.1 Of the remaining population, 30% die in hospices and nursing homes, and 16% at home. In response, Palliative Care Australia1 has prioritised access to resources for people to die in the place they choose. Enabling individual choice and respecting wishes to promote quality of life are basic tenets of palliative care philosophy.5
Corresponding author: Frances M Reed, La Trobe School of Rural Health, La Trobe University, P.O. Box 199, Bendigo, VIC 3552, Australia. Email: [email protected]
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Generalist community nurses, commonly called district nurses (DNs) in Australia, are a major resource for rural home care and may be in the best position to advocate for end-of-life (EoL) choice. EoL is defined as ‘the part of life where a person is living with and impaired by an eventually fatal condition, even if the prognosis is ambiguous or unknown’.6 The purpose of this review is to describe circumstances that could influence DN advocacy for client choice to live and die at home in rural Australia and identify gaps in the knowledge of this topic.
Rural Australian health and workforce The social and economic determinants of health disadvantage the 29% of rural residents living in outer and inner regional areas of Australia.7 Disparity between rural and urban health funding,8 scarce resources, limited access to services and ageing of the population and health workforce contribute to poorer physical and mental health.7,9 Declining agricultural income in many areas has reduced socioeconomic status, town populations and the availability of services, employment and education.10 The vast geographical size of Australia restricts access to the wider range of services in regional and urban centres for many rural residents.10,11 To see a local general practitioner may require travel of over 1 h.7 These and other socio-economic circumstances have fostered a culture of hardiness and community self-reliance, resulting in reluctance to seek healthcare.12,13 Diverse indigenous, colonial and immigrant populations and the unique characteristics of different rural areas present the need for culturally competent and locally accessible healthcare service.7,14 Local healthcare options are limited in rural areas due to the lack of specialist and alternative service viability, and this affects EoL care.9 Health services that are available cater for a range of primary care needs and are generalist in nature.9 As a result, rural health professionals require a wide scope of knowledge and skill, which may extend to other health fields and professions, depending on community access to different health services.15 Accessibility and community expectations are affected when health professionals are well-known local identities,16,17 adding stress to the autonomous, extended, roles that lack supportive services, collegial advice and legal certainty.15,18,19 Limited specialist palliative care service availability in rural areas increases EoL care responsibility for general practitioners and nurses.20 As rural generalists, DNs currently face high demand in providing EoL care for a variety of reasons. Home care has changed due to rising levels of complexity in care required, ageing population demographics, new technology that allows medical and nursing care at home and earlier hospital discharge,21 increasing the diversity of care required within expanding caseloads.22,23 DNs working in rural services have little administrative support, or accessible education, and the coverage of large districts includes time-consuming travel to outer lying homes.17 In addition, recent Australian Government health policy requires DNs to actively enable and build client strengths and community involvement to assist independent living, which has increased work without matching funding.24 Australian rural DNs report working in resource-poor environments, volunteering service to meet gaps in care provision.22 Nursing care provided in private homes is invisible and poorly understood.25,26 The National Rural Health Alliance of Australia states EoL care lacks sufficient funding and equitable distribution.27 This compromises the quality of life for people in rural areas due to ‘the inadequacy of care’28 and lack of service choices available to offer. Consequently, the burden of care often falls on informal caregivers, such as family and friends. The well-being of family in their caring role is a consideration in client choices.29 Offering physical and emotional support can ease the burden of care on families and enable greater choice in EoL care.30
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DN advocacy for choice in care Advocacy is needed to improve EoL care for rural Australians.28 Nursing advocacy has the potential to raise care into the realms of excellence, promoting satisfaction by empowering client-centred goals and choices in care with the provision of information and support.31,32 The seminal works of Gadow33 and Curtin34 indicate that nursing advocacy empowers self-determination through relationships based on the understanding of clients’ subjective needs and respect for their values and informed choices. Kohnke35 proposed a nursing advocacy model that requires informing and supporting self-determination on three levels: for nurses themselves, clients and communities.35 DN advocacy can increase choice through informing and supporting35 rural Australian EoL goals.
The scoping study While the literature identifies advocacy as an inherent function of the DN role36–38 and the home environment influences advocacy by promoting client-centred care,39,40 there is scant research on DN actions and resulting outcomes.25,26 Knowledge of the circumstances influencing DN advocacy for rural client choice to live and die at home may assist the planning and practice of district nursing care and improve outcomes for people choosing to live and die at home, and for all those involved in their care. A scoping study was chosen to review a broad range of information on this subject that lacks specific research. Unlike a systematic review, which evaluates and synthesises evidence pertaining to a very specific research idea, a scoping review addresses the broader topic to map any literature that is applicable and provide an overview of the knowledge surrounding the topic.41 Scoping studies are gaining recognition in the field of health as a useful way to synthesise a broad range of research evidence about an emergent topic of interest.42
Methodology The review was based on the interpretive scoping design framework described by Arksey and O’Malley.41 The sequential process involved formulating the research question; identifying relevant studies; selecting studies against inclusion and exclusion criteria; charting the data and collating, summarising and reporting the results. The optional final stage of expert consultation was not used in this study, as experts were consulted in the search and selection stage. The design framework aided the mapping of key concepts in DN EoL care to identify deficits in the knowledge and provide a narrative summary of current evidence that can be readily used in the practice and policy of district nursing.41
Identifying the research question An initial search for literature on the advocacy role in district nursing EoL care revealed a lack of research on the topic. To attain knowledge of the topic within the discipline of nursing, a broad question was developed: What circumstances influence DN advocacy for rural client choice to live and die at home? Identifying the target population, the concept and the intended health outcomes assisted the strategic search for data.42 The target population of DNs, the circumstances influencing advocacy and the outcome of client choice in EoL care were used to guide the scope of the review.
Identifying relevant studies A search of international research on home nursing published in English language from the year 2000 onwards was used to find contemporary home care literature. The search was conducted in May to July and
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Define search Generalist nurse end-of-life home care English language Year 2000 to 2013
Expert advice
5. Hand search of reference lists and new searches
2. Online Search Final Selection 4. Selection with inclusion /exclusion criteria
N = 34 studies
ProQuest Central n = 55 CINHAL n = 957 Emerald n = 190 Google Scholar n = 858 Informit n = 14 Ovid n = 18
3. Results
Excluded Medical focus 6 Reviews 3 Non research 14 Other 11 Other worker 15 Other community settings 3 Case studies 2
N = 79 after abstracts scanned Full text saved
Figure 1. Iterative search and study selection.
updated in December 2013, accessing CINAHL, ProQuest Central, Ovid and Emerald databases; Google Scholar and incorporated subsequent hand searches of references. Keywords used in the search were titles of ‘home health nurs*’, ‘community health nurs*’, ‘district nurs*’; and ‘community nurs*’; combined with, AND ‘palliative care’, or ‘end-of-life’; ‘home care’. A third-level search added ‘advoca*’, ‘support’ and ‘empower*’. The term ‘nursing home’ was excluded where possible due to the large number of false hits generated. The search entailed an iterative process, as initial keyword and Boolean phrases of nurse titles combined with second-level keywords produced large numbers of references, whereas adding ‘advoca*’ produced few. ‘Support’ was used after it appeared extensively in the search in reference to emotional and psychosocial nursing care. Support is identified as an antecedent of advocacy in the nursing literature.31,33 A search of references from the resulting studies indicated research on empowerment, prompting a further search (see Figure 1). Limiting the data selection allowed an exploration of relevant, reliable and informative literature to produce a qualitative thematic analysis and identify gaps in knowledge in a manageable time frame.42 Further understandings may have been gained by expanding the search; however, the consistency of results in the studies selected indicated that they were representative of DN practice.
Selection of the studies fitting the inclusion and exclusion criteria Database searches netted 1237 results: CINAHL (n ¼ 957), Emerald (n ¼ 190), ProQuest Central (n ¼ 55), Ovid (n ¼ 18) and InformIT (n ¼ 14). Google Scholar produced a further 858 articles. The abstracts of these articles were scanned to remove any duplicates or articles that did not fit the initial search criteria. The
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Table 1. Inclusion and exclusion criteria. Inclusion
Exclusion
Empirical research including method detail/ethical considerations End-of-life care at home Focus on district nurses Holistic care Research from developed countries Research published from 2000 to July 2013 Community settings other than the home Focus included other health professionals, volunteers, workers, family Medical and physical care No method and ethical considerations Research from undeveloped countries Secondary research and theoretical articles
remaining 79 were accessed in full text and examined using the inclusion and exclusion criteria derived from familiarity with the literature available.42 The final inclusion criteria were limited to empirical studies that focused on DN EoL holistic care for clients and/or carers in their homes in the developed countries. Articles were excluded if they focused on medical treatment, family, other community settings or other healthcare workers. Reviews, theoretical articles and case studies that had no method description or ethical considerations were excluded (see Table 1.)
Charting the data A data charting form was developed to assist analysis41 which included authors, date, country, aims, participants, method, design and major outcomes relevant to the review question. Although all the selected studies informed the analysis, a section of the data chart was used to isolate studies specifically including participants from rural areas to extract information on rural circumstances influencing DN potential for advocacy.
Collating, summarising and reporting the results The fifth stage is divided into three steps recommended to ensure rigour in the process.42 In the first step, descriptive numerical and thematic analyses of the data are presented, in the second the results of the thematic analysis are reported and in the third the meaning of the findings as they relate to the purpose of the review is discussed.42 These are presented as separate sections.
Description of the numerical and thematic analyses The search and selection isolated 34 studies fitting the inclusion criteria. Charting the data from these studies assisted numerical analysis of study method and design and thematic analysis of findings. Numerical analysis revealed the extent of DN EoL care research internationally. Countries represented were the United Kingdom (n ¼ 19), Sweden (n ¼ 6), Canada (n ¼ 5), Australia (n ¼ 3) and Japan (n ¼ 1). Studies from Australia (n ¼ 3) and the United Kingdom (n ¼ 2) documented inclusion of participants working in rural areas, and of these, three provided discussion of specific rural issues. Qualitative semi-structured interview was the predominant technique used for data collection. Other methods included qualitative multi-method (n ¼ 7), mixed (n ¼ 3) and quantitative (n ¼ 1). District/community/home care nurses (n ¼ 720), clients (n ¼ 127), family/carers (n ¼ 57), leaders and
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managers (n ¼ 31) and community palliative specialists (n ¼ 3) participated in the research. Data were collected, in order of frequency, by interview, focus groups, observation, case studies, narratives, survey and written life history. The literature identifies the different forms of affect that underpin the role and function of DNs, including attitudes, relationships, emotional care, empowerment, ethical care and perceptions of quality care, good death, community and the holistic role conflict. Mixed and multi-method studies provided insight on different facets of DN actions. Consistent with scoping methodology, the quality of the data was not analysed critically;41 however, all the studies reviewed were published in peer-reviewed health journals, included detail of aims, method and ethical considerations that promoted reader confidence and produced similar findings applicable to the purpose of the review. Charting the studies, then summarising the key findings and coding with NVIVO revealed international commonalities and interrelated themes. Findings included themes of the nursing relationship, the environment of care, communication, support and the holistic client-centred DN role. Within these themes, the compounding effect of rurality on DN care reported from the United Kingdom and Australia provides insight into circumstances that may influence rural DN advocacy for client choice where no direct evidence has been found.
Results The nursing relationship The studies attribute prime importance to the depth and quality of the nursing relationship43–61 promoted by DN contact early in EoL care.24,44,46–48,62 The ongoing opportunity to nurture client strengths and develop trust can improve relationship quality, enable client-centred planning and enhance well-being.44–46,53,62 Respect for choices,47,54,62–64 flexibility and a commitment to dignity allows DNs to meet the varied needs and expectations of clients, involved family members45–52,62,65 and their communities.56,66 Ability to enter and view the ‘dying world’ from other perspectives gives access to private emotions,64 where professional boundaries fade, and everyone deserves attention and care.63 DNs may become part of the client’s life and deliver holistic, empowering care within the supportive community.47,51,53 Community inclusion raises awareness of services and access and enables partnerships that benefit health outside the formal environment.56,66 Barriers to positive relationships are evident in the selected studies and impact significantly on rural care. Negative DN attitudes to EoL care, boundary setting, emotions, conflict and late referrals reduce relationship time and quality, directing attention to physical needs and crisis management.43,45,47,48,62,63,67–69 Emotional burden and dependence on DNs is avoided by distancing care, using personal,43,44 professional and organisational boundaries.43,56,70 Separating DN living and working roles in the same rural community can be difficult due to high levels of commitment, informal after hours care and risk of being overwhelmed by care of friends, neighbours or relatives. Difficulties are balanced against continuity of care, witnessing benefits and community belonging.56,66 Professional boundaries are complex and problematic in emotional relationship work.50
The environment of care DN EoL care in the home functions within a resource-poor environment.24,43,45,49,53,57,64,65,70,71 Time is the ‘key’ resource in developing relationships where information is shared and choices are made,45,63,68 but urgency of need prioritises decisions about how to divide and ‘create’ time.49 DNs report working through breaks and after hours,43,49,66 while trying not to hurry EoL care.44 Time pressure may be apparent to clients who express guilt at taking up time.24,71 Inadequate staff resources and cost saving focus care on urgent
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medical need.43,72 In rural areas, time available for care is reduced by restricted formal service hours combined with long travel distances and chronic staff shortages that limit replacement for time off duty and education.50,66 Nevertheless, the literature indicates benefit to DNs in the environment of the home setting. Though initially seen as intruders in the home,59,65 DNs can gain guest status56,59,60,65,72 and achieve greater understanding from the home atmosphere and family situation.45,55,59,60 Relationship power is shared, prompting negotiation in care planning and delivery.56 The shift in power helps some DNs excel in respectful care,44,59 and ‘sustain, safeguard and enable very ill people to stay in life’.59 Satisfaction is reported by some DNs from the autonomy to increase care quality,49,73 client control and comfort.45 Motivation to go beyond expected care to respect client wishes to live and die at home in rural Australia is high, regardless of some acknowledged negative attitudes and lack of educational preparedness.66 The need to understand local cultural characteristics of the population and have education and support to provide culturally competent EoL care is considered important.66 In contrast, rural UK DNs report witnessing lack of respect for clients, and the home becoming medicalised when hospital models of care are applied in the community,56 and some rural Australian DNs complain of difficulty switching cultures of care between their divided hospital and community nursing roles.23 Some DNs dislike the lack of control, high emotional demand and family power and conflict in the home.45,67,74
Communication Informing and understanding the client and family relies on effective communication. Early EoL communication allows individualised information to be given and collected in a sensitive manner.48,61,65 Listening skills, acceptance, offering choice44,49,53,58 and intuitive timing promote discussion of emotive issues that can also involve the family.46 This aids coping, reduces fear and normalises the situation,44,62 allowing goals, such as dying at home, to be identified, and planning towards this end to occur.45,46,65 Communication was found to fail for different reasons. Information and choice were deliberately restricted to reduce service use in one study,70 and another found family information was secondary, culturally inadequate and aimed at increasing family care rather than providing resources.65 Previous neglect of client or family perspectives,64 family conflict,67 very ill clients,65 cognitive decline, sensory difficulties,48 language and cultural differences all require extra communication effort.64,65 Australian rural nurses identify the need for communication to be culturally appropriate.66 Inter-service communication is also important for effective care.47,51,73 The communication of client goals within the care team helps protect client rights,43,46,72 but problems occur54 if no key worker is nominated;61 it is difficult finding out ‘who knows what’48 or the work relationships, knowledge and attitudes of general practitioners and palliative care workers isolate rural DNs.50 Lack of communication causes dissatisfaction, reduces culturally competent care ability,50 fragments services and limits capability for support.43,61,71
Support The need to support clients and their families is identified, and described in terms of ‘being there’ for them, providing any type of support required to cope with emotional strain, new care tasks and planning for change.46,50,51,59,62,73,74 Therapeutic relationships that offer support62 and increase confidence are promoted by positive DN attitudes, education69 and emotional intelligence,60 through which reflective thought, empathy and experience promote ability to put aside personal feelings and approach emotional care calmly to dispel tension.60 Skills and commitment to emotional care for the ideal of normalising the EoL52 enable
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DNs to connect with the ‘dying world’,64 offering the security, knowledge and comfort of supportive relationships and continuity of care45,46,51,54 in ways suited to the individuals involved.50 Inadequate support is reported when DNs lack confidence, knowledge and skill in emotional care and when concern about over-involvement results in avoidance and neglect of psychological need.24,58,64,67,68,71 Emotional EoL care with limited resources and high expectations63 requires courage and commitment55 in ‘daring to engage’ and ‘daring to stay’.44 In one study, DNs reported giving psychological support, but it was observed by the researcher and confirmed by clients to be social support58 and ‘rapport’ building through ‘chatting’.65 Emotional avoidance was observed and also reported by some DNs,43,58,61 as were negative attitudes69 and discharging clients who only needed psychological support, with the intent of discouraging helplessness.71 DNs report feeling powerless to make ethical decisions43,55,67 where access to EoL education and support is difficult.50 Providing for rural need56,66 promotes boundary crossing in substitution for absent support systems,66 and ‘giving too much’56 of one self.50 The resulting ethical dilemmas and emotional demand on DNs put support for the needs of clients and families at risk. The high levels of emotional stress on DNs involved in EoL care are exacerbated by a lack of support for the generalist DN service.44 Providing EoL care within a complex caseload requires constant emotional readjustment49,54,67,75 and juggling needs.74 Rushing work, long days and going beyond expected duty of care for client well-being75 may extend in rural areas to voluntary out-of-hours support and respite care.66 Urban DNs gain support from reflection and informal team discussions in negotiating sensitive relationship boundaries,60 but the high levels of emotional work, resource disparity and lack of supportive infrastructure render self-care difficult for rural DNs, resulting in complaints of having no choice about including EoL care in their role.50,66 This situation is described as critical,50 with support from management, palliative care teams, continuing professional development and education commonly recommended.23,47,49,50,55,63,66,74 In one rural Australian study, support from Aboriginal healthcare workers is described as essential for appropriate indigenous EoL care.66
The holistic client-centred district nursing role DNs express an ideal of holistic, client-centred EoL care.43,45,46,48,50,56–58,75 Consideration and flexibility in DN service for the holistic need of clients and family who are ‘vulnerable’ is ‘sacred’50 and aimed at promoting security and well-being.51,55 While psychosocial care is recognised as important, demand on DN services has increased care coordination responsibility, requiring delegation of basic care tasks.43,45 The resulting fragmentation of DN direct care time and increased numbers of care workers in the home45 creates confusion over roles and negative experiences for clients and carers, stereotyping DNs into a physical care role. Lack of clarification by DNs compounds the problem of role misunderstanding.71 Tension exists from the desired holistic focus clashing with expectations, organisational cost containment and individual and professional boundaries.43,53,56,68 DNs report that managerial misunderstanding and hierarchical inter-professional influences affect their role.75 These are apparent in late-stage referrals for physical and medical care and the expectation that this is prioritised63 as the legitimate work.24,43,45 Task-oriented care creates dependency rather than support,53 by ‘doing for’ rather than the ideal of ‘doing with’ that takes longer initially.63 A recent UK study reveals that task-focused, cost-cutting measures lead to neglect of care for dying people, DN dissatisfaction and high levels of staff attrition.43 Lack of general role understanding24,62 makes the structure and organisation of district nursing service reactive to problems rather than empowering for clients and their families.47 Empowerment models of care have added to role misunderstanding.53,63,70 Positive empowerment in maximising client control58,63 and family confidence to ‘feel good’ about the care at home53 contrast with negative concepts and effects, such as fostering dependency, avoiding responsibility and limiting service and choice when DN and client or family values conflict.53 Expectation on families to increase care provision results
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in DN control,70 which is desired by some.74 Managers express concern about DNs getting too involved, or creating reliance, and stress the need to set restrictive boundaries in care relationships, prioritising resource management over need and promoting impersonal care delivery systems.70 Lack of time and guidelines, avoidance of emotional care and the paternalistic health system culture reflected in DN values prevent empowerment.53,70 DNs need to be proactive in promoting their supportive role and early referral,24,68,73 or risk increasing misunderstanding because the importance of less visible care is not recognised.45 Individual interpretation of the DN role also affects the type of care offered. DN attitudes, education,66,69 individual qualities, assumptions, abilities and experience influence their individual role perception.53 Comfort with providing emotional and psychosocial support is dependent on individual perception of ability, affecting relationship boundaries and wellness.50 The impact in rural areas is magnified when the few DNs available enact their role in very different ways.65 The effect of individual DN response to the structural forces on boundary setting50 is not recognised, adding to misunderstanding and conflict.56
Discussion The description of the themes common to DN EoL care studied internationally brings current knowledge to bear on circumstances that may also influence DN advocacy. However, the practice of rural DN EoL care is not well informed. Despite sharing care characteristics with urban DNs, little is known about how closer ties to the community, less privacy or lack of resources and support to cope with ethical conflict and emotional burden affect rural DN advocacy. Due to the dearth of rural DN advocacy information, this discussion utilises rural, nursing and advocacy literature to further identify gaps in DN EoL care research. The studies indicate significant barriers to the quality of the nurse–client relationship, which is the key to advocacy.31–35 Of these, boundary setting, emotional relational burden and medicalisation of the district nursing role appear to be major barriers for rural DN EoL care. Individual variation in DN attitudes and ability for emotional care reveals that power through care delivery can either enhance or remove choice for clients who are vulnerable.33 The ongoing influence of the medical model of expert control affecting the culture of the nurse–client relationship is apparent in a study on rural in-home nursing care in Australia, prompting a call for reflection about the result of structural influences on care enactment.76 Purkis,77 however, warns that the invisibility of care in the home leads to different care provision despite policy directives. It is not known how individual DN differences affect advocacy and client goal outcomes. Empowerment of vulnerable clients and their family can only occur when advocacy is client centred.78 The boundary restrictions reported in DN relationships may have more impact on rural DN advocacy. Other rural nursing literature indicates that nursing relationships extend to involve the wider community,16,17 and boundaries are prone to change, requiring rural DNs to be ‘very flexible’ and know when to ‘break the rules’ in the best interests of the client.79 In Curtin’s34 concept of nurse advocacy based on human caring, ‘any given encounter can freely determine the form that relationship is to have i.e. child and parent, client and counsellor, friend and friend’. This concept supports relationships based on need rather than restrictive boundaries, to enable advocacy. The emotional relational burden of ‘giving too much’56 is evident in the studies. Kenny et al.80 found that rural hospital nurses also experience professional boundary erosion and stress from being constantly on duty, and providing EoL care for relatives and friends with inadequate resources. Wilson et al.81 state ‘caring for dying strangers is difficult, but caring for dying neighbours or friends is even more difficult’. The need for support, education, emotional intelligence and self-care is strongly identified in the studies. Although Kohnke35 points out that self-advocacy is necessary to prepare oneself to advocate, this is difficult given that rural DNs do not have ready access to supportive resources and education.50 There is a lack of knowledge about how rural DNs prepare and sustain themselves to advocate.
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Medicalisation of the DN role also presents a greater barrier by restricting nursing relationships in a rural culture where accessing medical assistance is a last resort.12 Cultural and communication difficulties in access and relationships expressed and observed in the studies require time and opportunity to know the client, consider individual needs and provide information in an understandable way and amount when the client is ready.34 Bushy and Hegney82 propose mindful interaction in the home and social environment as the most effective way to gain understanding of individual and group cultural, social and personal perspectives that affect health behaviours, backed up by educational knowledge of specific cultural world views. DN social involvement in the community may encourage earlier access to health services,83 but the results indicate that effective rural EoL care requires proactive DN work within the clients’ family, the care team and the wider community. DN relationships that allow timely communication and support34 and development of informed goals are essential for effective advocacy.35 Kohnke35 urges effort to understand the underlying goals of others involved in care to reduce conflict and increase effective communication. This promotes shared goals and change from within by enabling DN provision of expert knowledge in holistic client need.35 Evans et al.84 state the ‘answers will have to come from those primary care professionals who find themselves providing the service under conditions that are less than ideal’. Little is known about how medicalisation, relationship boundaries and professional, cultural and social differences influence rural DN advocacy for choice in EoL care at client and community levels.
Conclusion The scoping study of international DN research brings to the fore the compounding effect of the emotional effort of EoL care in an environment of inadequate resources. The research studies that explored the perceptions of people involved in the EoL caring relationship enable insight into varied care enactment in comparison to ideals. It is evident that DNs are highly committed to providing quality care but work in difficult circumstances that may prevent advocacy for client choice, especially in rural areas. Nursing relationships in the home can provide opportunity for advocacy, but barriers of relational burden, role medicalisation and lack of resources need to be surmounted. This information will enable policymakers, funding bodies and managers to understand the circumstances that impact on the DN role and function. The absence of research on DN advocacy leaves many gaps in understanding how advocacy assists choice for vulnerable clients to live and die at home. Research exploring how DNs manage relationship, cultural and resource barriers to provide EoL advocacy may offer greater understanding to inform outcomes of action. Increasing the visibility and understanding of the holistic work of rural DN at the EoL can guide advocacy for choice and improve the well-being of everyone involved. It is evident that some DNs overcome circumstances to advocate for choice, but the question is How do DNs advocate successfully for rural Australian EoL care goals? Acknowledgements The authors acknowledge the support from La Trobe University and staff, Victoria, Australia. Conflict of interest There is no conflict of interest. Funding This study received scholarship from La Trobe University, Victoria, Australia.
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References 1. Palliative Care Australia. Urgent action needed to ensure quality care at the end of life for all Australians. Palliative Care Australia, Deakin West, 2011, http://www.palliativecare.org.au/Portals/46/PCA%20media%20release %20-%20Consensus%20Statement%20-%20%20June%202011web.pdf 2. McGrath P. ‘I don’t want to be in that big city; this is my country here’: research findings into aboriginal peoples’ preference to die at home. Aust J Rural Health 2007; 15: 264–268. 3. Department of Health and Ageing (ed.). Health system reform and care at the end of life: a guidance document. Canberra, ACT, Australia: Australian Government, 2011. 4. Australian Institute of Health and Welfare. Australia’s health 2012: in brief. Canberra, ACT, Australia: Australian Government, 2012. 5. Randall F and Downie RS. End of life choices: consensus and controversy. Oxford: Oxford University Press, 2010. 6. Palliative Care Australia. Palliative Care Australia: glossary of terms. 1st ed. Deakin, ACT, Australia: Palliative Care Australia, 2008. 7. National Rural Health Alliance. The national strategic framework for rural and remote health. Department of Health and Ageing, 2012, http://www.ruralhealthaustralia.gov.au/internet/rha/publishing.nsf/Content/NSFRRH-homepage 8. National Rural Health Alliance. Map locator. Australian Government, 2012, http://www.ruralhealthaustralia.gov. au/internet/rha/publishing.nsf/content/locator 9. Humphreys JS. Key considerations in delivering appropriate and accessible health care for rural and remote populations: discussant overview. Aust J Rural Health 2009; 17: 34–38. 10. Alston M. Rural poverty. Aust Soc Work 2000; 53: 29–34. 11. McLachlan R, Gilfillan G and Gordon J. Deep and persistent disadvantage in Australia: productivity commission staff working paper. Productivity Commission Australian Government, 2013, http://www.pc.gov.au/__data/assets/ pdf_file/0007/124549/deep-persistent-disadvantage.pdf 12. Wilkes LM and White K. The family and nurse in partnership: providing day-to-day care for rural cancer patients. Aust J Rural Health 2005; 13: 121–126. 13. Longman J, Singer J, Gao Y, et al. Community based service providers’ perceptions on frequent and/or avoidable admission of people with chronic disease in rural NSW: a qualitative study. BMC Health Serv Res 2011; 11: 265–276. 14. Bourke L, Coffin J, Taylor J, et al. Rural health in Australia. Rural Soc 2010; 20: 2–9. 15. Mills J, Birks M and Hegney D. The status of rural nursing in Australia: 12 years on. Collegian 2010; 17: 30–37. 16. Hegney D and McCarthy A. Job satisfaction and nurses in rural Australia. J Nurs Adm 2000; 30: 347–350. 17. Allan J, Ball P and Alston M. ‘You have to face your mistakes in the street’: the contextual keys that shape health service access and health workers’ experiences in rural areas. Rural Remote Health 2008; 8: 835. 18. Hegney D. Extended, expanded, multi-skilled or advanced practice? Rural nurses in Australia, 1991–1994. Collegian 1997; 4: 22–27. 19. Gibb H. Preparation for rural practice. In: Wilkinson D and Blue I (eds) The new rural health. South Melbourne, VIC, Australia: Oxford University Press, 2002, pp. 253–259. 20. Palliative Care Australia (PCA). Palliative care service provision in Australia: a planning guide. 2nd ed. 2003, http://www.palliativecare.org.au/Portals/46/Palliative%20Care%20Service%20Provision%20in%20Australia% 20-%20a%20planning%20guide.pdf 21. Van Loon A. Community nursing in Australia. In: Kralik D and Van Loon A (eds) Community nursing in Australia. Milton, QLD, Australia: John Wiley & Sons, 2011. 22. Alford K and O’Meara A. Stretching district nursing services to meet rural needs. Aust J Rural Health 2001; 9: 286–292. 23. Wilkes LM and Beale B. Palliative care at home: stress for nurses in urban and rural New South Wales, Australia. Int J Nurs Pract 2001; 7: 306–313.
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24. Department of Health. Hume region review of HACC district nursing services. Victorian Government, 2012, http:// www.health.vic.gov.au/hacc/publications/downloads/hume/dns_report2012.pdf 25. Walshe C and Luker KA. District nurses’ role in palliative care provision: a realist review. Int J Nurs Stud 2010; 47: 1167–1183. 26. Shipman C, Burt J, Ream E, et al. Improving district nurses’ confidence and knowledge in the principles and practice of palliative care. J Adv Nurs 2008; 63: 494–505. 27. National Rural Health Alliance Inc. Improving the social determinants of rural and remote health. Aust J Rural Health 2013; 21: 135. 28. Macnamara B and Rosenwax L. The mismanagement of dying. Health Sociol Rev 2007; 16: 373–383. 29. McNally S. The experience of advocacy. Br J Nurs 1995; 4: 87–89. 30. McCarron S. Home care of palliative care patients: supporting the wish to die at home. Curr Therap 2000; 41: 20–22, 24–25. 31. Vaartio H, Leino-Kilpi H, Salantera S, et al. Nurse advocacy: how is it defined by patients and nurses, what does it involve and how is it experienced? Scand J Caring Sci 2006; 20: 282–292. 32. Benner P. From novice to expert: excellence and power in clinical nursing practice. Menlo Park, CA: Addison-Wesley Publishing Company, Nursing Division, 1984. 33. Gadow S. Advocacy nursing and new meanings in aging. Nurs Clin North Am 1979; 14: 81–91. 34. Curtin L. The nurse as advocate: a philosophical foundation for nursing. ANS Adv Nurs Sci 1979; 1: 1–10, 13. 35. Kohnke M. Advocacy, risk and reality. St. Louis, MO: C.V. Mosby Company, 1982. 36. Community Health Nursing Special Interest Group.The role and scope of Community Health Nurses in Victoria, and their capacity to promote health and wellbeing: advocating for health, 2010, http://www.anfvic.asn.au/sigs/ topics/2298.html 37. Stanhope M and Landcaster J. Foundations of nursing in the community: community-oriented practice. 3rd ed. St. Louis, MO: Mosby Elsevier, 2010. 38. Josse-Eklund A, Petza¨ll K, Sandin-Bojo¨ AK, et al. Swedish registered nurses’ and nurse managers’ attitudes towards patient advocacy in community care of older patients. J Nurs Manag 2013; 21: 753–761. 39. Wotton K, Borbasi S and Redden M. When all else has failed: nurses’ perception of factors influencing palliative care for patients with end-stage heart failure. J Cardiovasc Nurs 2005; 20: 18–25. 40. Kubsh S, Sternard M, Hovarter R, et al. A holistic model of advocacy: factors that influence its use. Complement Ther Nurs Midwifery 2004; 10: 37–45. 41. Arksey H and O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol 2005; 8: 19–32. 42. Levac D, Colquhoun H and O’Brien KK. Scoping studies: advancing the methodology. Implement Sci 2010; 5: 69. 43. Adams M, Robert G and Maben J. ‘Catching up’: the significance of occupational communities for the delivery of high quality home care by community nurses. Health (London) 2013; 17: 422–438. 44. Stoltz P, Lindholm M, Ude´n G, et al. The meaning of being supportive for family caregivers as narrated by registered nurses working in palliative homecare. Nurs Sci Q 2006; 19: 163–173. 45. Luker KA, Austin L, Caress A, et al. The importance of ‘knowing the patient’: community nurses’ constructions of quality in providing palliative care. J Adv Nurs 2000; 31: 775–782. 46. Hirano Y, Yamamoto-Mitani N, Ueno M, et al. Home care nurses’ provision of support to families of the elderly at the end of life. Qualitative Health Research 2011; 21: 199–213. 47. Tomison G and McDowell JRS. Nurses’ needs in delivering palliative care for long-term conditions. Br J Community Nurs 2011; 16: 274–281. 48. Kennedy C. District nursing support for patients with cancer requiring palliative care. Br J Community Nurs 2005; 10: 566–574. 49. Marchessault J, Legault A and Martinez A-M. Providing in-home palliative care within a generalist caseload: a chance for nurses to reflect on life and death. Int J Palliat Nurs 2012; 18: 135–141.
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50. Rose J and Glass N. An Australian investigation of emotional work, emotional well-being and professional practice: an emancipatory inquiry. J Clin Nurs 2010; 19: 1405–1414. 51. McKenzie H, Boughton M, Hayes L, et al. A sense of security for cancer patients at home: the role of community nurses. Health Soc Care Community 2007; 15: 352–359. 52. Appelin G, Broba¨ck G and Bertero¨ C. A comprehensive picture of palliative care at home from the people involved. Eur J Oncol Nurs 2005; 9: 315–324. 53. Stajduhar KI, Funk L, Wolse F, et al. Core aspects of empowering caregivers as articulated by leaders in home health care: palliative and chronic illness contexts. Can J Nurs Res 2011; 43: 78–94. 54. Griggs C. Community nurses’ perceptions of a good death: a qualitative exploratory study. Int J Palliat Nurs 2010; 16: 138–149. 55. Karlsson C and Berggren I. Dignified end-of-life care in the patients’ own homes. Nurs Ethics 2011; 18: 374–385. 56. McGarry J. The essence of ‘community’ within community nursing: a district nursing perspective. Health Soc Care Community 2003; 11: 423–430. 57. Griffiths J, Ewing G, Rogers M, et al. Supporting cancer patients with palliative care needs, district nurses’ role perceptions’. Cancer Nurs 2007; 30: 156–162. 58. Griffiths J, Ewing G and Rogers M. ‘Moving swiftly on’. Psychological support provided by district nurses to patients with palliative care needs. Cancer Nurs 2010; 33: 390–397. 59. Santos Salas A and Cameron B. Ethical openings in home care practice. Nurs Ethics 2010; 17: 655–665. 60. Davies S, Jenkins E and Mahhett G. Emotional intelligence: district nurses’ lived experiences. Br J Community Nurs 2005; 15: 141–146. 61. Dunne K, Sullivan K and Kernohan G. Palliative care for patients with cancer: district nurses’ experiences. J Adv Nurs 2005; 50: 372–380. 62. Wright K. Caring for the terminally ill: the district nurse’s perspective. Br J Nurs 2002; 11: 1180–1185. 63. Ward-Griffin C, McWilliam C and Oudshoorn A. Negotiating relational practice patterns in palliative home care. J Palliat Care 2012; 28: 97–104. 64. Law R. ‘Bridging worlds’: meeting the emotional needs of dying patients. J Adv Nurs 2009; 65: 2630–2641. 65. Gerrish K. Caring for the carers: the characteristics of district nursing support for family carers. Prim Health Care Res Dev 2008; 9: 14–24, 158. 66. Cumming M, Boreland F and Perkins D. Do rural primary health care nurses feel equipped for palliative care? Aust J Prim Health 2012; 18: 274–283. 67. Wilson C, Griffiths J, Ewing G, et al. A qualitative exploration of district nurses’ care of patients with advanced cancer. Cancer Nurs 2014; 37(4): 310–315. 68. Disler R and Jones A. District nurse interaction in engaging with end-stage chronic obstructive pulmonary disease patients: a mixed methods study. J Nurs Healthc Chronic Illn 2010; 2: 302–312. 69. Smith R and Porock D. Caring for people dying at home: a research study into the needs of nurses. Int J Palliat Nurs 2009; 14: 601–608. 70. Funk LM, Stajduhar KI and Purkis ME. An exploration of empowerment discourse within home-care nurses’ accounts of practice. Nurs Inq 2011; 18: 66–76. 71. Luker KA, Wilson K, Pateman B, et al. The role of district nursing: perspectives of cancer patients and their carers before and after hospital discharge. Eur J Cancer Care 2003; 12: 308–316. 72. Karlsson M, Roxberg A, da Silva A, et al. Community nurses’ experiences of ethical dilemmas in palliative care: a Swedish study. Int J Palliat Nurs 2010; 16: 224–231. 73. Andrew J and White F. The experience of district nurses caring for people receiving palliative chemotherapy. Int J Palliat Nurs 2004; 10: 110–118. 74. Bertero¨ C. District nurses’ perceptions of palliative care in the home. Am J Hosp Palliat Care 2002; 19: 387–391. 75. Burt J, Shipman C, Addington-Hall J, et al. Nursing the dying within a generalist caseload: a focus group study of district nurses. Int J Nurs Stud 2008; 45: 1470–1478.
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76. Hall J and McWilliam CL. About the culture of in-home nursing. Home Health Care Serv Q 2006; 25: 75–90. 77. Purkis M. Managing home nursing care: visibility, accountability and exclusion. Nurs Inq 2001; 8: 141–150. 78. Falk Raphael A. Advocacy and empowerment: dichotomous or synchronous concepts? ANS Adv Nurs Sci 1995; 18: 25–32. 79. Troyer L and Lee HJ. Rural generalist nurse in community health. In: Lee HJ and Winters CA (eds) Rural nursing: concepts theory and practice. 2nd ed. New York: Springer Publishing Co., Inc., 2006, pp. 205–217. 80. Kenny A, Endacott R, Botti M, et al. Emotional toil: psychosocial care in rural settings for patients with cancer. J Adv Nurs 2007; 60: 663–672. 81. Wilson D, Justice C, Thomas R, et al. Planning and providing end of life care in rural areas. J Rural Health 2006; 22: 147–181. 82. Bushy A and Hegney D. Orientation to nursing in the rural community. Thousand Oaks, CA: Sage, 2000. 83. Raph SJ and Buehler JA. Rural health professionals’ perception of lack of anonymity. In: Lee HJ and Winters CA (eds) Rural nursing: concepts, theory, and practice. 2nd ed. New York: Springer Publishing Co., Inc., 2006, pp. 197–204. 84. Evans R, Stone D and Elwyn G. Organizing palliative care for rural populations: a systematic review of the evidence. Fam Pract 2003; 20: 304–310, 350.
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District nurse advocacy for choice to live and die at home in rural Australia: A scoping study
Nursing Ethics 2015, Vol. 22(4) 479–492 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014538889 nej.sagepub.com
Frances M Reed, Les Fitzgerald and Melanie R Bish La Trobe University, Australia
Abstract Background: Choice to live and die at home is supported by palliative care policy; however, health resources and access disparity impact on this choice in rural Australia. Rural end-of-life home care is provided by district nurses, but little is known about their role in advocacy for choice in care. Objectives: The study was conducted to review the scope of the empirical literature available to answer the research question: What circumstances influence district nurse advocacy for rural client choice to live and die at home?, and identify gaps in the knowledge. Method: Interpretive scoping methodology was used to search online databases, identify suitable studies and select, chart, analyse and describe the findings. Results: 34 international studies revealed themes of ‘the nursing relationship’, ‘environment’, ‘communication’, ‘support’ and ‘the holistic client centred district nursing role. Discussion: Under-resourcing, medicalisation and emotional relational burden could affect advocacy in rural areas. Conclusion: It is not known how district nurses overcome these circumstances to advocate for choice in end-of-life care. Research designed to increase understanding of how rural district nurses advocate successfully for client goals will enable improvements to be made in the quality of end-of-life care offered. Keywords Advocacy, community, district nursing, end-of-life, holistic, palliative
Introduction and background In Australia, there is a preference to live the last part of life and die at home.1–3 Despite this, inpatient admissions for palliative care are rising,4 and the majority of Australians die in hospital.1 Of the remaining population, 30% die in hospices and nursing homes, and 16% at home. In response, Palliative Care Australia1 has prioritised access to resources for people to die in the place they choose. Enabling individual choice and respecting wishes to promote quality of life are basic tenets of palliative care philosophy.5
Corresponding author: Frances M Reed, La Trobe School of Rural Health, La Trobe University, P.O. Box 199, Bendigo, VIC 3552, Australia. Email: [email protected]
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Generalist community nurses, commonly called district nurses (DNs) in Australia, are a major resource for rural home care and may be in the best position to advocate for end-of-life (EoL) choice. EoL is defined as ‘the part of life where a person is living with and impaired by an eventually fatal condition, even if the prognosis is ambiguous or unknown’.6 The purpose of this review is to describe circumstances that could influence DN advocacy for client choice to live and die at home in rural Australia and identify gaps in the knowledge of this topic.
Rural Australian health and workforce The social and economic determinants of health disadvantage the 29% of rural residents living in outer and inner regional areas of Australia.7 Disparity between rural and urban health funding,8 scarce resources, limited access to services and ageing of the population and health workforce contribute to poorer physical and mental health.7,9 Declining agricultural income in many areas has reduced socioeconomic status, town populations and the availability of services, employment and education.10 The vast geographical size of Australia restricts access to the wider range of services in regional and urban centres for many rural residents.10,11 To see a local general practitioner may require travel of over 1 h.7 These and other socio-economic circumstances have fostered a culture of hardiness and community self-reliance, resulting in reluctance to seek healthcare.12,13 Diverse indigenous, colonial and immigrant populations and the unique characteristics of different rural areas present the need for culturally competent and locally accessible healthcare service.7,14 Local healthcare options are limited in rural areas due to the lack of specialist and alternative service viability, and this affects EoL care.9 Health services that are available cater for a range of primary care needs and are generalist in nature.9 As a result, rural health professionals require a wide scope of knowledge and skill, which may extend to other health fields and professions, depending on community access to different health services.15 Accessibility and community expectations are affected when health professionals are well-known local identities,16,17 adding stress to the autonomous, extended, roles that lack supportive services, collegial advice and legal certainty.15,18,19 Limited specialist palliative care service availability in rural areas increases EoL care responsibility for general practitioners and nurses.20 As rural generalists, DNs currently face high demand in providing EoL care for a variety of reasons. Home care has changed due to rising levels of complexity in care required, ageing population demographics, new technology that allows medical and nursing care at home and earlier hospital discharge,21 increasing the diversity of care required within expanding caseloads.22,23 DNs working in rural services have little administrative support, or accessible education, and the coverage of large districts includes time-consuming travel to outer lying homes.17 In addition, recent Australian Government health policy requires DNs to actively enable and build client strengths and community involvement to assist independent living, which has increased work without matching funding.24 Australian rural DNs report working in resource-poor environments, volunteering service to meet gaps in care provision.22 Nursing care provided in private homes is invisible and poorly understood.25,26 The National Rural Health Alliance of Australia states EoL care lacks sufficient funding and equitable distribution.27 This compromises the quality of life for people in rural areas due to ‘the inadequacy of care’28 and lack of service choices available to offer. Consequently, the burden of care often falls on informal caregivers, such as family and friends. The well-being of family in their caring role is a consideration in client choices.29 Offering physical and emotional support can ease the burden of care on families and enable greater choice in EoL care.30
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DN advocacy for choice in care Advocacy is needed to improve EoL care for rural Australians.28 Nursing advocacy has the potential to raise care into the realms of excellence, promoting satisfaction by empowering client-centred goals and choices in care with the provision of information and support.31,32 The seminal works of Gadow33 and Curtin34 indicate that nursing advocacy empowers self-determination through relationships based on the understanding of clients’ subjective needs and respect for their values and informed choices. Kohnke35 proposed a nursing advocacy model that requires informing and supporting self-determination on three levels: for nurses themselves, clients and communities.35 DN advocacy can increase choice through informing and supporting35 rural Australian EoL goals.
The scoping study While the literature identifies advocacy as an inherent function of the DN role36–38 and the home environment influences advocacy by promoting client-centred care,39,40 there is scant research on DN actions and resulting outcomes.25,26 Knowledge of the circumstances influencing DN advocacy for rural client choice to live and die at home may assist the planning and practice of district nursing care and improve outcomes for people choosing to live and die at home, and for all those involved in their care. A scoping study was chosen to review a broad range of information on this subject that lacks specific research. Unlike a systematic review, which evaluates and synthesises evidence pertaining to a very specific research idea, a scoping review addresses the broader topic to map any literature that is applicable and provide an overview of the knowledge surrounding the topic.41 Scoping studies are gaining recognition in the field of health as a useful way to synthesise a broad range of research evidence about an emergent topic of interest.42
Methodology The review was based on the interpretive scoping design framework described by Arksey and O’Malley.41 The sequential process involved formulating the research question; identifying relevant studies; selecting studies against inclusion and exclusion criteria; charting the data and collating, summarising and reporting the results. The optional final stage of expert consultation was not used in this study, as experts were consulted in the search and selection stage. The design framework aided the mapping of key concepts in DN EoL care to identify deficits in the knowledge and provide a narrative summary of current evidence that can be readily used in the practice and policy of district nursing.41
Identifying the research question An initial search for literature on the advocacy role in district nursing EoL care revealed a lack of research on the topic. To attain knowledge of the topic within the discipline of nursing, a broad question was developed: What circumstances influence DN advocacy for rural client choice to live and die at home? Identifying the target population, the concept and the intended health outcomes assisted the strategic search for data.42 The target population of DNs, the circumstances influencing advocacy and the outcome of client choice in EoL care were used to guide the scope of the review.
Identifying relevant studies A search of international research on home nursing published in English language from the year 2000 onwards was used to find contemporary home care literature. The search was conducted in May to July and
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Define search Generalist nurse end-of-life home care English language Year 2000 to 2013
Expert advice
5. Hand search of reference lists and new searches
2. Online Search Final Selection 4. Selection with inclusion /exclusion criteria
N = 34 studies
ProQuest Central n = 55 CINHAL n = 957 Emerald n = 190 Google Scholar n = 858 Informit n = 14 Ovid n = 18
3. Results
Excluded Medical focus 6 Reviews 3 Non research 14 Other 11 Other worker 15 Other community settings 3 Case studies 2
N = 79 after abstracts scanned Full text saved
Figure 1. Iterative search and study selection.
updated in December 2013, accessing CINAHL, ProQuest Central, Ovid and Emerald databases; Google Scholar and incorporated subsequent hand searches of references. Keywords used in the search were titles of ‘home health nurs*’, ‘community health nurs*’, ‘district nurs*’; and ‘community nurs*’; combined with, AND ‘palliative care’, or ‘end-of-life’; ‘home care’. A third-level search added ‘advoca*’, ‘support’ and ‘empower*’. The term ‘nursing home’ was excluded where possible due to the large number of false hits generated. The search entailed an iterative process, as initial keyword and Boolean phrases of nurse titles combined with second-level keywords produced large numbers of references, whereas adding ‘advoca*’ produced few. ‘Support’ was used after it appeared extensively in the search in reference to emotional and psychosocial nursing care. Support is identified as an antecedent of advocacy in the nursing literature.31,33 A search of references from the resulting studies indicated research on empowerment, prompting a further search (see Figure 1). Limiting the data selection allowed an exploration of relevant, reliable and informative literature to produce a qualitative thematic analysis and identify gaps in knowledge in a manageable time frame.42 Further understandings may have been gained by expanding the search; however, the consistency of results in the studies selected indicated that they were representative of DN practice.
Selection of the studies fitting the inclusion and exclusion criteria Database searches netted 1237 results: CINAHL (n ¼ 957), Emerald (n ¼ 190), ProQuest Central (n ¼ 55), Ovid (n ¼ 18) and InformIT (n ¼ 14). Google Scholar produced a further 858 articles. The abstracts of these articles were scanned to remove any duplicates or articles that did not fit the initial search criteria. The
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Table 1. Inclusion and exclusion criteria. Inclusion
Exclusion
Empirical research including method detail/ethical considerations End-of-life care at home Focus on district nurses Holistic care Research from developed countries Research published from 2000 to July 2013 Community settings other than the home Focus included other health professionals, volunteers, workers, family Medical and physical care No method and ethical considerations Research from undeveloped countries Secondary research and theoretical articles
remaining 79 were accessed in full text and examined using the inclusion and exclusion criteria derived from familiarity with the literature available.42 The final inclusion criteria were limited to empirical studies that focused on DN EoL holistic care for clients and/or carers in their homes in the developed countries. Articles were excluded if they focused on medical treatment, family, other community settings or other healthcare workers. Reviews, theoretical articles and case studies that had no method description or ethical considerations were excluded (see Table 1.)
Charting the data A data charting form was developed to assist analysis41 which included authors, date, country, aims, participants, method, design and major outcomes relevant to the review question. Although all the selected studies informed the analysis, a section of the data chart was used to isolate studies specifically including participants from rural areas to extract information on rural circumstances influencing DN potential for advocacy.
Collating, summarising and reporting the results The fifth stage is divided into three steps recommended to ensure rigour in the process.42 In the first step, descriptive numerical and thematic analyses of the data are presented, in the second the results of the thematic analysis are reported and in the third the meaning of the findings as they relate to the purpose of the review is discussed.42 These are presented as separate sections.
Description of the numerical and thematic analyses The search and selection isolated 34 studies fitting the inclusion criteria. Charting the data from these studies assisted numerical analysis of study method and design and thematic analysis of findings. Numerical analysis revealed the extent of DN EoL care research internationally. Countries represented were the United Kingdom (n ¼ 19), Sweden (n ¼ 6), Canada (n ¼ 5), Australia (n ¼ 3) and Japan (n ¼ 1). Studies from Australia (n ¼ 3) and the United Kingdom (n ¼ 2) documented inclusion of participants working in rural areas, and of these, three provided discussion of specific rural issues. Qualitative semi-structured interview was the predominant technique used for data collection. Other methods included qualitative multi-method (n ¼ 7), mixed (n ¼ 3) and quantitative (n ¼ 1). District/community/home care nurses (n ¼ 720), clients (n ¼ 127), family/carers (n ¼ 57), leaders and
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managers (n ¼ 31) and community palliative specialists (n ¼ 3) participated in the research. Data were collected, in order of frequency, by interview, focus groups, observation, case studies, narratives, survey and written life history. The literature identifies the different forms of affect that underpin the role and function of DNs, including attitudes, relationships, emotional care, empowerment, ethical care and perceptions of quality care, good death, community and the holistic role conflict. Mixed and multi-method studies provided insight on different facets of DN actions. Consistent with scoping methodology, the quality of the data was not analysed critically;41 however, all the studies reviewed were published in peer-reviewed health journals, included detail of aims, method and ethical considerations that promoted reader confidence and produced similar findings applicable to the purpose of the review. Charting the studies, then summarising the key findings and coding with NVIVO revealed international commonalities and interrelated themes. Findings included themes of the nursing relationship, the environment of care, communication, support and the holistic client-centred DN role. Within these themes, the compounding effect of rurality on DN care reported from the United Kingdom and Australia provides insight into circumstances that may influence rural DN advocacy for client choice where no direct evidence has been found.
Results The nursing relationship The studies attribute prime importance to the depth and quality of the nursing relationship43–61 promoted by DN contact early in EoL care.24,44,46–48,62 The ongoing opportunity to nurture client strengths and develop trust can improve relationship quality, enable client-centred planning and enhance well-being.44–46,53,62 Respect for choices,47,54,62–64 flexibility and a commitment to dignity allows DNs to meet the varied needs and expectations of clients, involved family members45–52,62,65 and their communities.56,66 Ability to enter and view the ‘dying world’ from other perspectives gives access to private emotions,64 where professional boundaries fade, and everyone deserves attention and care.63 DNs may become part of the client’s life and deliver holistic, empowering care within the supportive community.47,51,53 Community inclusion raises awareness of services and access and enables partnerships that benefit health outside the formal environment.56,66 Barriers to positive relationships are evident in the selected studies and impact significantly on rural care. Negative DN attitudes to EoL care, boundary setting, emotions, conflict and late referrals reduce relationship time and quality, directing attention to physical needs and crisis management.43,45,47,48,62,63,67–69 Emotional burden and dependence on DNs is avoided by distancing care, using personal,43,44 professional and organisational boundaries.43,56,70 Separating DN living and working roles in the same rural community can be difficult due to high levels of commitment, informal after hours care and risk of being overwhelmed by care of friends, neighbours or relatives. Difficulties are balanced against continuity of care, witnessing benefits and community belonging.56,66 Professional boundaries are complex and problematic in emotional relationship work.50
The environment of care DN EoL care in the home functions within a resource-poor environment.24,43,45,49,53,57,64,65,70,71 Time is the ‘key’ resource in developing relationships where information is shared and choices are made,45,63,68 but urgency of need prioritises decisions about how to divide and ‘create’ time.49 DNs report working through breaks and after hours,43,49,66 while trying not to hurry EoL care.44 Time pressure may be apparent to clients who express guilt at taking up time.24,71 Inadequate staff resources and cost saving focus care on urgent
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medical need.43,72 In rural areas, time available for care is reduced by restricted formal service hours combined with long travel distances and chronic staff shortages that limit replacement for time off duty and education.50,66 Nevertheless, the literature indicates benefit to DNs in the environment of the home setting. Though initially seen as intruders in the home,59,65 DNs can gain guest status56,59,60,65,72 and achieve greater understanding from the home atmosphere and family situation.45,55,59,60 Relationship power is shared, prompting negotiation in care planning and delivery.56 The shift in power helps some DNs excel in respectful care,44,59 and ‘sustain, safeguard and enable very ill people to stay in life’.59 Satisfaction is reported by some DNs from the autonomy to increase care quality,49,73 client control and comfort.45 Motivation to go beyond expected care to respect client wishes to live and die at home in rural Australia is high, regardless of some acknowledged negative attitudes and lack of educational preparedness.66 The need to understand local cultural characteristics of the population and have education and support to provide culturally competent EoL care is considered important.66 In contrast, rural UK DNs report witnessing lack of respect for clients, and the home becoming medicalised when hospital models of care are applied in the community,56 and some rural Australian DNs complain of difficulty switching cultures of care between their divided hospital and community nursing roles.23 Some DNs dislike the lack of control, high emotional demand and family power and conflict in the home.45,67,74
Communication Informing and understanding the client and family relies on effective communication. Early EoL communication allows individualised information to be given and collected in a sensitive manner.48,61,65 Listening skills, acceptance, offering choice44,49,53,58 and intuitive timing promote discussion of emotive issues that can also involve the family.46 This aids coping, reduces fear and normalises the situation,44,62 allowing goals, such as dying at home, to be identified, and planning towards this end to occur.45,46,65 Communication was found to fail for different reasons. Information and choice were deliberately restricted to reduce service use in one study,70 and another found family information was secondary, culturally inadequate and aimed at increasing family care rather than providing resources.65 Previous neglect of client or family perspectives,64 family conflict,67 very ill clients,65 cognitive decline, sensory difficulties,48 language and cultural differences all require extra communication effort.64,65 Australian rural nurses identify the need for communication to be culturally appropriate.66 Inter-service communication is also important for effective care.47,51,73 The communication of client goals within the care team helps protect client rights,43,46,72 but problems occur54 if no key worker is nominated;61 it is difficult finding out ‘who knows what’48 or the work relationships, knowledge and attitudes of general practitioners and palliative care workers isolate rural DNs.50 Lack of communication causes dissatisfaction, reduces culturally competent care ability,50 fragments services and limits capability for support.43,61,71
Support The need to support clients and their families is identified, and described in terms of ‘being there’ for them, providing any type of support required to cope with emotional strain, new care tasks and planning for change.46,50,51,59,62,73,74 Therapeutic relationships that offer support62 and increase confidence are promoted by positive DN attitudes, education69 and emotional intelligence,60 through which reflective thought, empathy and experience promote ability to put aside personal feelings and approach emotional care calmly to dispel tension.60 Skills and commitment to emotional care for the ideal of normalising the EoL52 enable
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DNs to connect with the ‘dying world’,64 offering the security, knowledge and comfort of supportive relationships and continuity of care45,46,51,54 in ways suited to the individuals involved.50 Inadequate support is reported when DNs lack confidence, knowledge and skill in emotional care and when concern about over-involvement results in avoidance and neglect of psychological need.24,58,64,67,68,71 Emotional EoL care with limited resources and high expectations63 requires courage and commitment55 in ‘daring to engage’ and ‘daring to stay’.44 In one study, DNs reported giving psychological support, but it was observed by the researcher and confirmed by clients to be social support58 and ‘rapport’ building through ‘chatting’.65 Emotional avoidance was observed and also reported by some DNs,43,58,61 as were negative attitudes69 and discharging clients who only needed psychological support, with the intent of discouraging helplessness.71 DNs report feeling powerless to make ethical decisions43,55,67 where access to EoL education and support is difficult.50 Providing for rural need56,66 promotes boundary crossing in substitution for absent support systems,66 and ‘giving too much’56 of one self.50 The resulting ethical dilemmas and emotional demand on DNs put support for the needs of clients and families at risk. The high levels of emotional stress on DNs involved in EoL care are exacerbated by a lack of support for the generalist DN service.44 Providing EoL care within a complex caseload requires constant emotional readjustment49,54,67,75 and juggling needs.74 Rushing work, long days and going beyond expected duty of care for client well-being75 may extend in rural areas to voluntary out-of-hours support and respite care.66 Urban DNs gain support from reflection and informal team discussions in negotiating sensitive relationship boundaries,60 but the high levels of emotional work, resource disparity and lack of supportive infrastructure render self-care difficult for rural DNs, resulting in complaints of having no choice about including EoL care in their role.50,66 This situation is described as critical,50 with support from management, palliative care teams, continuing professional development and education commonly recommended.23,47,49,50,55,63,66,74 In one rural Australian study, support from Aboriginal healthcare workers is described as essential for appropriate indigenous EoL care.66
The holistic client-centred district nursing role DNs express an ideal of holistic, client-centred EoL care.43,45,46,48,50,56–58,75 Consideration and flexibility in DN service for the holistic need of clients and family who are ‘vulnerable’ is ‘sacred’50 and aimed at promoting security and well-being.51,55 While psychosocial care is recognised as important, demand on DN services has increased care coordination responsibility, requiring delegation of basic care tasks.43,45 The resulting fragmentation of DN direct care time and increased numbers of care workers in the home45 creates confusion over roles and negative experiences for clients and carers, stereotyping DNs into a physical care role. Lack of clarification by DNs compounds the problem of role misunderstanding.71 Tension exists from the desired holistic focus clashing with expectations, organisational cost containment and individual and professional boundaries.43,53,56,68 DNs report that managerial misunderstanding and hierarchical inter-professional influences affect their role.75 These are apparent in late-stage referrals for physical and medical care and the expectation that this is prioritised63 as the legitimate work.24,43,45 Task-oriented care creates dependency rather than support,53 by ‘doing for’ rather than the ideal of ‘doing with’ that takes longer initially.63 A recent UK study reveals that task-focused, cost-cutting measures lead to neglect of care for dying people, DN dissatisfaction and high levels of staff attrition.43 Lack of general role understanding24,62 makes the structure and organisation of district nursing service reactive to problems rather than empowering for clients and their families.47 Empowerment models of care have added to role misunderstanding.53,63,70 Positive empowerment in maximising client control58,63 and family confidence to ‘feel good’ about the care at home53 contrast with negative concepts and effects, such as fostering dependency, avoiding responsibility and limiting service and choice when DN and client or family values conflict.53 Expectation on families to increase care provision results
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in DN control,70 which is desired by some.74 Managers express concern about DNs getting too involved, or creating reliance, and stress the need to set restrictive boundaries in care relationships, prioritising resource management over need and promoting impersonal care delivery systems.70 Lack of time and guidelines, avoidance of emotional care and the paternalistic health system culture reflected in DN values prevent empowerment.53,70 DNs need to be proactive in promoting their supportive role and early referral,24,68,73 or risk increasing misunderstanding because the importance of less visible care is not recognised.45 Individual interpretation of the DN role also affects the type of care offered. DN attitudes, education,66,69 individual qualities, assumptions, abilities and experience influence their individual role perception.53 Comfort with providing emotional and psychosocial support is dependent on individual perception of ability, affecting relationship boundaries and wellness.50 The impact in rural areas is magnified when the few DNs available enact their role in very different ways.65 The effect of individual DN response to the structural forces on boundary setting50 is not recognised, adding to misunderstanding and conflict.56
Discussion The description of the themes common to DN EoL care studied internationally brings current knowledge to bear on circumstances that may also influence DN advocacy. However, the practice of rural DN EoL care is not well informed. Despite sharing care characteristics with urban DNs, little is known about how closer ties to the community, less privacy or lack of resources and support to cope with ethical conflict and emotional burden affect rural DN advocacy. Due to the dearth of rural DN advocacy information, this discussion utilises rural, nursing and advocacy literature to further identify gaps in DN EoL care research. The studies indicate significant barriers to the quality of the nurse–client relationship, which is the key to advocacy.31–35 Of these, boundary setting, emotional relational burden and medicalisation of the district nursing role appear to be major barriers for rural DN EoL care. Individual variation in DN attitudes and ability for emotional care reveals that power through care delivery can either enhance or remove choice for clients who are vulnerable.33 The ongoing influence of the medical model of expert control affecting the culture of the nurse–client relationship is apparent in a study on rural in-home nursing care in Australia, prompting a call for reflection about the result of structural influences on care enactment.76 Purkis,77 however, warns that the invisibility of care in the home leads to different care provision despite policy directives. It is not known how individual DN differences affect advocacy and client goal outcomes. Empowerment of vulnerable clients and their family can only occur when advocacy is client centred.78 The boundary restrictions reported in DN relationships may have more impact on rural DN advocacy. Other rural nursing literature indicates that nursing relationships extend to involve the wider community,16,17 and boundaries are prone to change, requiring rural DNs to be ‘very flexible’ and know when to ‘break the rules’ in the best interests of the client.79 In Curtin’s34 concept of nurse advocacy based on human caring, ‘any given encounter can freely determine the form that relationship is to have i.e. child and parent, client and counsellor, friend and friend’. This concept supports relationships based on need rather than restrictive boundaries, to enable advocacy. The emotional relational burden of ‘giving too much’56 is evident in the studies. Kenny et al.80 found that rural hospital nurses also experience professional boundary erosion and stress from being constantly on duty, and providing EoL care for relatives and friends with inadequate resources. Wilson et al.81 state ‘caring for dying strangers is difficult, but caring for dying neighbours or friends is even more difficult’. The need for support, education, emotional intelligence and self-care is strongly identified in the studies. Although Kohnke35 points out that self-advocacy is necessary to prepare oneself to advocate, this is difficult given that rural DNs do not have ready access to supportive resources and education.50 There is a lack of knowledge about how rural DNs prepare and sustain themselves to advocate.
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Medicalisation of the DN role also presents a greater barrier by restricting nursing relationships in a rural culture where accessing medical assistance is a last resort.12 Cultural and communication difficulties in access and relationships expressed and observed in the studies require time and opportunity to know the client, consider individual needs and provide information in an understandable way and amount when the client is ready.34 Bushy and Hegney82 propose mindful interaction in the home and social environment as the most effective way to gain understanding of individual and group cultural, social and personal perspectives that affect health behaviours, backed up by educational knowledge of specific cultural world views. DN social involvement in the community may encourage earlier access to health services,83 but the results indicate that effective rural EoL care requires proactive DN work within the clients’ family, the care team and the wider community. DN relationships that allow timely communication and support34 and development of informed goals are essential for effective advocacy.35 Kohnke35 urges effort to understand the underlying goals of others involved in care to reduce conflict and increase effective communication. This promotes shared goals and change from within by enabling DN provision of expert knowledge in holistic client need.35 Evans et al.84 state the ‘answers will have to come from those primary care professionals who find themselves providing the service under conditions that are less than ideal’. Little is known about how medicalisation, relationship boundaries and professional, cultural and social differences influence rural DN advocacy for choice in EoL care at client and community levels.
Conclusion The scoping study of international DN research brings to the fore the compounding effect of the emotional effort of EoL care in an environment of inadequate resources. The research studies that explored the perceptions of people involved in the EoL caring relationship enable insight into varied care enactment in comparison to ideals. It is evident that DNs are highly committed to providing quality care but work in difficult circumstances that may prevent advocacy for client choice, especially in rural areas. Nursing relationships in the home can provide opportunity for advocacy, but barriers of relational burden, role medicalisation and lack of resources need to be surmounted. This information will enable policymakers, funding bodies and managers to understand the circumstances that impact on the DN role and function. The absence of research on DN advocacy leaves many gaps in understanding how advocacy assists choice for vulnerable clients to live and die at home. Research exploring how DNs manage relationship, cultural and resource barriers to provide EoL advocacy may offer greater understanding to inform outcomes of action. Increasing the visibility and understanding of the holistic work of rural DN at the EoL can guide advocacy for choice and improve the well-being of everyone involved. It is evident that some DNs overcome circumstances to advocate for choice, but the question is How do DNs advocate successfully for rural Australian EoL care goals? Acknowledgements The authors acknowledge the support from La Trobe University and staff, Victoria, Australia. Conflict of interest There is no conflict of interest. Funding This study received scholarship from La Trobe University, Victoria, Australia.
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