An exploration of self-management support in the context of palliative nursing: a modified concept analysis

Living with a life limiting condition, be it advanced cancer, or any other non-malignant disease, for which there is no cure, can have a devastating effect on a person. The impact can extend to psychological, social, physical, economic and cultural aspects of people’s lives [8‐10]. Individuals tend to cope as well as they can, with the support they have, whether that be from family or other sources, but often they do not have the information, skills or knowledge to make well informed decisions or the appropriate response [11]. Many patients do not understand what health professionals have said to them and do not, therefore, participate in decisions about their care, this leaves them ill-prepared to make daily decisions and take actions that lead to good care management. A collaborative relationship between nurses, health care teams, and patients and their families is, therefore important. Supported self-management in palliative care, by nurses, can, therefore, empower people to acknowledge the impact of their condition on their life, and enable them, where possible, to face the range of challenges they may have, and identify areas where they need further support, help or care [8].

In seeking to address the above issues this paper is concerned with exploring the issue of how self-management support in palliative nursing is conceptualised in the literature.

Concept analysis is considered a relatively new research approach, method or process [12] and is not an approach which is universally accepted [13]. The term concept analysis refers to the unfolding, exploring and understanding of concepts for the purposes of concept development, delineation, clarification, correction, identification, refinement and validation [14‐17].

Walker and Avant [16] in the method chosen here, propose that; concepts are mental representations of a phenomenon or an idea, of an action or a thing that can accurately represents these occurrences within clinical practice. They advocate that the conceptualisation of concepts and their use in describing nursing practice is a stepping-stone towards the standardization of nursing language. In addition, concepts can be described as efforts to categorize information into meaningful constructs when applied to a phenomenon that occurs within the field of health care. A concept analysis is, therefore, a rigorous and precise process of operationalizing the defining characteristics and attributes of a phenomenon into a communicable understanding, and is undertaken using a structured framework [16].

Concept analysis is a method of conceptual knowledge representation and data analysis that can be used to clarify meanings and develop operational definitions, through considering evidence from multiple disciplines and sources. By applying a recognised methodological framework a more objective approach to concept clarification is accomplished. The systematic framework also means that the process is applicable within diverse scientific disciplines [16].

To guide the process of literature and analysis a modified version of the eight-step model presented by Walker and Avant was applied [16]. The eight steps of the model do not need to be, and were not, used in chronological order and can and were modified as the enquiry progressed.

Table 1 outlines the 8 steps and whether and how applied for this concept analysis.

The concept self-management support and how it relates to palliative nursing will be analysed in this paper.

In Walker and Avant’s method the first stage is usually a literature review.

Palliate has its origins in medieval Latin palliativus, from the verb palliare ‘to cloak’.

Self-care has been defined in the dictionary as: “The care of oneself without medical, professional, or other assistance or oversight” [20].

Self-management can be defined as the decisions and behaviours that patients with chronic illness engage in that affect their health. Self-management support is the care and encouragement provided to people with chronic conditions and their families to help them understand their central role in managing their illness, make informed decisions about care, and engage in healthy behaviours [21].

Self-management is ‘the successful outcome of the person and all appropriate individuals and services working together to support him or her to deal with the very real implications of living the rest of their life with one or more long term condition’ [22].

Support for self management is what services provide to encourage people to take decisions and make choices that improve their health, wellbeing and health-related behaviours [22].

The development of palliative care nursing has been part of a movement that has grown from roots in the nineteenth century, and particularly the second half of the twentieth century through the UK hospice movement and principally Cicely Saunders, who was originally a nurse [27] Seymour [28] argues that one of the clearest definitions of palliative nursing is that of Johnston [27] p. 2): “All life-threatening illnesses – be they cancer, neurological, cardiac or respiratory disease – have implications for physical, social, psychological and spiritual health, for both the individual and their family. The role of palliative nursing is therefore to assess needs in each of these areas and to plan, implement and evaluate appropriate interventions. It aims to improve the quality of life and to enable a dignified death” [29].

The palliative nurse, therefore, enters into a unique therapeutic relationship with the patient, which requires excellent communication skills and emphasises role aspects such as educator and information giver [27, 29, 30] and highlights their key involvement in the delivery of individualised, holistic care [27, 30]. The expert palliative nurse is someone who is interpersonally skilled, particularly in terms of the ability to be willing to listen, has personal humane characteristics such as warmth, kindness and compassion, and who helps the patient by meeting their needs, is there for them and provides them with emotional support, knows the patient as person and is knowledgeable, in particular, about pain and symptom control [27].

As discussed previously, the political and professional agenda over the last decade has changed favourably in terms in of integrating self-management into the health care agenda. This interest has the potential to benefit greatly palliative care delivery and the development of palliative care services. The challenge remains, however, as to how this is accomplished and, in particular, how best self-management can be implemented in practice. It is recognised that incorporating the concept of self-management into palliative nursing practice brings additional challenges when managing symptoms at the end of life and when there is no known cure [7]. However, it is understood that if self-management can be utilised to a greater degree it will result in a better quality of life for patients and their families and may reduce the financial costs [7, 28].

Self-management has for a long time been associated with a process whereby patients deliberately act on their own behalf in health promotion and prevention of illness and the detection and treatment of health deviations [28]. It has, however, historically taken second place to the medicalisation of disease and the patient’s passive acceptance of the care given by the medical and nursing professions. In examining the future potential of the concept for palliative care practice two observations are relevant. Firstly, up to the first decade of the twenty-first century most self-management strategies reviewed in the literature were professionally initiated and led [2]. Secondly, from a research perspective, few studies up to 2005 appeared to incorporate the patient’s views on palliative nursing care, particularly the concept of the expert palliative nurse [27].

Nevertheless, the concept of self-management is not unique to nursing practice as the concept was identified in the latter half of the twentieth century as part of the development of nursing theory and models to define and support the principles of nursing practice linked to other concepts such as coping [31, 32]. Orem in particular championed the concept of self-management and defined it as the supported activities of individuals, in order to maintain health and wellbeing. Her research identified that deficits in self-management were often related to factors such as lack of knowledge, side effects of treatment, or physical, social and psychological aspects related specific to the individual [33]. These factors remain central to the consideration of self-management in the context of palliative nursing and Orem’s model has relevance to palliative nursing as it links the concept to aspects of self-management in the contemporary literature, particularly in relation to wellbeing. Self-management in general has been shown to improve health outcomes, promote a feeling of well-being and improve the quality of life for those suffering incurable conditions [28].

A useful broad starting point to clarifying the meaning, relevance and use of the concept self-management in the context of palliative care and palliative nursing, is the definition put forward by Corner [34] (p.516). In palliative care the goal is to ‘live with dying’ with the focus on the self and not just the physical effects of illness. the following definition is, therefore, appropriate: maintaining ones usual practices of self-care, those things that are important and unique to oneself in maintaining ones sense of self; being given the means to master or deal with problems, rather than relinquish them to others”. This definition emphasises the patient; ‘being in control’ and ‘maintaining independence’, which are important in end of life care [27]. This definition immediately places the patient at the centre of the care and caring processes. However, it also introduces the idea of self-management as part of the caring process. In countries where the focus of health care has moved from hospital to the community, many patients desire to be cared for at home, whenever possible, and the goal is often concerned with achieving patient and family choice [35]. This provides an ideal opportunity for the individual and his/her family to be involved fully in and have control of, their care. Health care policy has reinforced this objective incorporating self-management as an additional focus with emphasis on enabling patients to manage their own health and well-being [6, 35, 36]. While willingness and ability to self-management will change over time, it is also affected by the unpredictable nature and complexity of health related challenges with the person receiving palliative care [37].

Self-management challenges may be compounded by the plethora of information which is now available in the public domain. This is increasing more recently, with ease of access through information technology. These developments bring with them the potential of patients to access incorrect information [38]. Informed decision-making and knowing the patient’s preferred choice [37] stress the importance of open and collaborative dialogue and knowledge of the patient’s own story past and present. These recommendations imply that palliative care is a continuous process enabling the patient to cope with and respond appropriately to challenges as and when they arise and make choices and decisions about the future. These key aspects of self-management highlight the importance of ‘knowing’ the patient as a person [27]. They also highlight that in the field of palliative care, the facilitation of self-management brings additional challenges in managing symptoms and helping patients to live a life focused on quality as opposed to quantity (time).

Moreover, an important issue for using self-management in practice is that not all individuals are either able to, or wish to, engage fully in self-management activities and that part of the professional’s assessment is to identify the degree of self-management need and capability that is appropriate at any point in time [2]. Degrees of self-management engagement can be identified through robust physical and emotional management that enables the individual to adjust and match their self-management capability to their identified self-management needs, thus enabling them to stay in control of their unique and individual situation. Table 5 identifies the essential themes aimed at initiating and supporting self-management actions [8].

Various attempts have been made to clarify the terms self-management. For instance, it has been viewed as a transition and how people incorporate the consequences of illness into their lives [39]. As well as, associating the concept with the professional support and direction patients receive, including how to follow given instructions and manage other aspects of their condition [28, 31]. While these definitions allow to patients a semi-passive role in their care; they are also associated with active patient and professional collaboration in decision making, facilitating choice and decisions that support independent patient activities. While many of these factors are relevant to the palliative care context Johnston et al. [2] identify the description by Foster et al. [39] as most appropriate to palliative care as it highlights strategies used by individuals to enhance control and maximize wellbeing and the effects and approaches used by the individual to optimise living as closer than any other to being appropriate for people with advanced disease at the end of life.

The capability to manage self-management appears to be associated strongly with the use of effective and robust assessment techniques, tools and processes, which are dependent on the patient with support from the nurse, assessing their own self-management needs and capability [2, 8, 28]. In addition, self-management in a palliative care context is linked to capability to control pain, manage other symptoms as well as evaluating the effectiveness of interventions.

The concept of ‘supported self-management’ can, therefore, be said to embrace both self-care and self-management. In ‘supported self-management’ the concept of self-management can be linked closely to the patient’s capability, while the professional is facilitating the patient to assess and identify their needs, moreover, self-management can be linked to outcomes of care and the patient’s actual and potential capability to act in a way that meets their identified needs.

Palliative care, therefore, needs to be underpinned by robust needs assessment, by the nurse, considering the patient’s wishes, skills, behaviours and knowledge. The fundamental concepts underpinning palliative nursing assessment are that it is, “… dynamic, Individualised, patient and family centred, sensitive and appropriate, holistic, therapeutic, contextual, comprehensive, based on reliable, current and valid information, evidence-based, driven by and focussed on process and outcomes”[27]. This definition of assessment can be used to guide the professional to achieve the goal of supported self-management as a contemporary concept, with strong underpinnings in the effectiveness of the patient/professional relationship and the skills of the professional to support the patient in his/her self-management endeavours [5].

Assessment also brings into sharp focus the effectiveness of the Multi-Disciplinary Team (MDT) in supporting self-management. Johnston [8, 27] highlights the importance of effective collaboration and communication in supported self-management, which could be considered as the heart of the Multi-Disciplinary Team’s (MDT).

Key characteristics of self-management support in palliative nursing are, therefore, presented in Table 6 according to the Walker and Avant theoretical process.

The identification of antecedents and consequences helps to refine the critical attributes and elucidate the contexts in which the concept is generally used [16]. Antecedents are factors that must be present before the occurrence of the concept whereas consequences are events that occur as a result of the concept.

For supportive self-management in palliative nursing to occur we identified four antecedents; presence of the nurse and spending time with the patient; [27, 40]development of a relationship with the patient,[8, 27, 40‐44]. Skills, knowledge and expertise of the nurse; [45‐49], team working and the ability of nurse to recognise when to refer on to other professionals or support services.

In analysing the concept of supportive self-management and palliative nursing this requires the demonstration of events that occur as a result of support being experienced/delivered. These consequences can be either a positive or negative experience for patients. Positive experiences for patients include feeling cared for and having their needs met; [27, 46] being informed [27, 47‐50] and being supported [27, 48]. Negative experiences include pain and symptom control needs not met [51, 52] not having their needs met and not being supported, [27, 42, 43] as wellbeing unable to manage, particular in relation to activities of daily living [10].

The purpose of this analysis was to define the concept of self management support in relation to palliative nursing. Whist literature was retrieved from a variety of sources, certain limitations are worth mentioning. Literature in languages other than English were not accessed. A broader search could have produced a more comprehensive definition. Additionally, an alternative concept analysis method may have produced a different outcome.

This concept analysis has identified that there is no universal definition of supportive self-management in palliative nursing. A clarified definition for nursing use based on this concept analysis is proposed below.

The use of a model such as that proposed by Walker and Avant [16] was found to be beneficial in facilitating a systematic approach to literature retrieval, review and analysis. While stages 1 and 2 of the model were used to clarify the direction of travel and inform key words and terms for the literature review stages 3 – 5 and 7 informed the focus of the analysis as well as the breadth and depth of literature retrieved. Stage 8 was important to supporting synthesis, which re-define self-management. Stages eight of the model helped to focus attention on the relevance and applicability of self-management to practice.