REVIEW
Living with chronic illness in adults: a concept analysis Leire Ambrosio, Juana Maria Senosiain Garcıa, Mario Riverol Fern andez, Sagrario Anaut Bravo, Sara Dıaz De Cerio Ayesa, Marıa Eugenia Urs ua Sesma, Neus Caparr os and Mari Carmen Portillo
Aims and objectives. To report an analysis of the concept of Living with chronic illness in adults, using Rodger’s evolutionary analytical methodology. Background. In the literature, several qualitative studies exist that address the question of Living with chronic illness from the adult patient’s perspective. However, the lack of clarity and consensus among the existing studies renders this concept ambiguous when it is analysed in depth. Design. A narrative review. Methods. A systematic search has been carried out on electronic databases such as Medline (PubMed), Cinahl (Ebsco), Cochrane Library, PsycINFO (Ovid), Embase, Cuiden, Dialnet and Scielo. This was limited to articles published in either Spanish or English, from 2003–2013. Results. Living with chronic illness is a complex, dynamic, cyclic and multidimensional process, and involves the development of five different attributes: Acceptance, Coping, Self-management, Integration and Adjustment. Depending on how these attributes operate, there are four different ways of living which can result from the process of Living with chronic illness: (1) Disavowal, (2) False Normality, (3) The New Normal and (4) Disruption. Conclusions. This paper contributes to the understanding of the concept ‘Living with chronic illness’. Findings in this analysis have to be evaluated with caution and further research is needed on this topic to confirm them. Also, more studies in evaluating how patients live a long-term condition are recommended to foster patient-centred care. Relevance to clinical practice. Findings generated from this concept analysis can raise awareness of Living with chronic illness so that this process could be assessed in a correct and uniform way in the clinical community and improved when needed.
What does this paper contribute to the wider global clinical community?
• Findings generated from this
•
concept analysis can raise awareness of the concept Living with chronic illness so that nurses could be assessed by this process in a correct and uniform way in the clinical community and improved towards a ‘Positive living’ when needed. The identification of attributes, antecedents, consequences and ways of living can serve as a guide in the development of instruments to measure how people live with chronic illness in community practice and the application of those instruments in clinical practice.
Key words: adults, concept analysis, Living with chronic illness, nursing, Rodgers Accepted for publication: 17 February 2015
Authors: Leire Ambrosio, MSc, BSc, RN, PhD student, Department of Adult Nursing, School of Nursing, University of Navarre, Pamplona; Juana Maria Senosiain Garcıa, BSc, RN, Lecturer, Department of Adult Nursing, School of Nursing, University of Navarre, Pamplona; Mario Riverol Fernandez, PhD, MD, Neurologist, Department of Neurology, Clınica Universidad de Navarra, University of Navarre, Pamplona; Sagrario Anaut Bravo, PhD, Professor, Department of Social Work, Public University of Navarre, Pamplona; Sara Dıaz De Cerio Ayesa, SW (Social Worker), Coordinator of Parkinson Association of Navarre, Pamplona; Marıa Eugenia Urs ua Sesma, MD, General Practitioner, Director of San Juan Pri-
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2357–2367, doi: 10.1111/jocn.12827
mary Health Centre, Pamplona; Neus Caparr os, PhD, Professor. Law Department, La Rioja University, Logro~ no, Pamplona Mari Carmen Portillo, PhD, MSc, BSc, Associate Professor, Department of Adult Nursing, School of Nursing, University of Navarre, Pamplona, Spain Correspondence: Mari Carmen Portillo, Associate Professor, Escuela Universitaria de Enfermerıa Universidad de Navarra, C/ Irunlarrea, s/n, Edif. De los Casta~ nos, 31008 Pamplona, Navarra, Spain. Telephone: +34 948 42 56 45. E-mail: [email protected] twitter: @mcportillov
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Introduction Demographic changes happening in the 20th century in the western world such as ageing and an increase in life expectancy have provoked a significant growth in chronic illnesses in today’s society (WHO 2005). In particular, chronic diseases have become the main health-related issue (WHO 2005). The term chronic illness is defined as a process of ‘long duration and generally slow progression that requires ongoing management over a period of years or decades’ (WHO 2005). Several studies show that having one or more chronic diseases does not only affect the physical state of an individual but also other contexts in their lives as well, such as the emotional and social ones (Portillo et al. 2012). In this respect, healthcare professionals need to adopt a holistic approach so that all aspects of the person, understood as a bio-psychosocial and spiritual being, are addressed (Portillo et al. 2012). Healthcare practitioners and, in particular, nurses play an essential role and need to reconsider daily practices to develop patient-centred care, focusing on the person and not on the disease (WHO 2005, Portillo et al. 2012). In other words, nurses need to know and understand what every illness holds for the patient. Understanding how a person lives with illness is necessary to provide care according to the individual’s needs. This concept analysis constitutes the first methodological step and the conceptual base for the development of a measuring scale of the degree of Living with chronic illness.
Background The concept, Living with chronic illness, emerged in the mid-1970s with the work carried out by Strauss and Glaser (1975), where the term appeared for the first time. This new concept was a revolution in its time because it created a change in the existing vision which was held about chronic illness until then. It became a starting point for dealing with psychosocial aspects of the illness. Consequently, later studies carried out in the 1980s and 1990s aimed to find out about Living with chronic illness from the patient0 s perspective (Bury 1982, Stewart & Sullivan 1982, Charmaz 1983, Corbin & Strauss 1985, 1987). This conceptual progress has had an important impact on today’s literature and at present, several qualitative studies have been identified in the literature (Koch et al. 2004, Telford et al. 2006, Kralik & Van Loon 2009), which address the patients’ experiences and perceptions of living with different chronic illnesses. There are also qualitative papers showing the factors (i.e. family support, resources or
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personality in terms of optimism) which influence the adaptation to chronic disease (Portillo et al. 2012, Ambrosio et al. 2014). Despite the great number of existing qualitative studies, there are no papers showing the concept of Living with chronic illness. Besides, the lack of clarity and consensus among these studies renders the concept ambiguous and hard to understand among health professionals; as will be shown in this paper. Concept clarification is an important step in developing useful and applicable knowledge in nursing science because it contributes to progress in the classification or characterisation of the concept and allows for its evaluation (Rodgers 2000). Therefore, a concept analysis was undertaken to explore the concept of Living with chronic illness in more detail and consequently, determine if this concept represents a process or an outcome. A concept analysis is defined as ‘a formal, linguistic process that examines the structure, function and application of a concept to elucidate its attributes’ (Lobo et al. 2013, p. 2). Rodgers’ evolutionary concept analysis method (Rodgers 2000) was chosen because it is a rigorous and inductive method and understands concepts as dynamic in time and argues that they are influenced by the context where they are being used, which are characteristics in accordance with the concept of Living with chronic illness in this paper in particular in adults (Rodgers 2000). This method consists of six steps (see Table 1) to clarify the concept so that a
Table 1 Steps for the concept analysis of Living with chronic illness (Rodgers 2000, p. 85) Steps for the concept analysis Step 1 Step 2 Step 3
Step 4
Step 5* Step 6
Identify the concept of interest (see background section) Identify and select an appropriate realm (setting and sample) for data collection. Collect data relevant to identify: Step 3.1 The attributes of the concept (attribute: the core defining qualities of the concept) Step 3.2 The contextual basis of the concept (antecedent and consequential occurrences) Antecedent: the event that precedes the appearance of the concept. Consequence: the event following the concept Analyse data regarding the above characteristics of the concept (integrated in the discussion section). Identify an exemplar of the concept, if appropriate. Identify implications for further development of the concept (integrated in the discussion section).
*Step 5 has not been considered relevant for the focus of this paper.
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2357–2367
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deeper understanding within the nursing discipline can be developed.
Aims and methods The aim of this paper was to analyse in depth the concept of Living with chronic illness in adults from the patient’s perspective as it is presented in the literature, using Rodgers’ evolutionary method (2000). To apply this method rigorously and identify and select an appropriate realm for data collection, a review on Medline (PubMed), Cinahl (Ebsco), Cochrane Library, PsycINFO (Ovid), Embase, Cuiden, Dialnet and Scielo databases was carried out. The terms in Fig. 1 were used and combined with ‘OR’ boolean operator for the related search terms referring to the same concept and with ‘AND’ for the different search groups. Furthermore, some words were truncated to encompass all possible endings. The following limits were applied to the search: Articles published in either English or Spanish. Articles published between 2000–2014. Articles with adult participants, over 18 years old. The search was restricted to articles published between 2000–2014 so that the review would be up to date. Apart from this, seminal works carried out in this area were also consulted and used when relevant. The age range of participants in the studies was also set at a limit because Living with chronic illness differs between children and adults. In particular, children face distinctly different challenges associated with developmental stages and parental relationships
Liv* with Liv* experience Life experience Everyday liv* Everyday life Coexistence Liv* together Life together Adjust* Adaptat* Transition* Integrat* Meaning* Chronic illness* Chronic disease* Long term condition* Chronic condition* Long term illness* Figure 1 Key terms.
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2357–2367
Living with chronic illness
in their daily living (Paterson 2001). Finally, it is also important to note that in this concept analysis, the chronic illness has not included mental illnesses, as these give rise to a whole set of distinct issues in areas such as Coping (Stanton et al. 2007). Once the search was carried out on electronic databases, the next step was to select the studies. First, their title and abstract were read, and those irrelevant to the proposed topic were dismissed. Articles were selected according to the inclusion and exclusion criteria described in Table 2. In addition to the electronic search on databases, a manual review of the table of contents was carried out in the journals most relevant to the topic in international context [actual year (i.e. 2014 issues)]: International journals Journal of Advanced Nursing Chronic illness Journal of Clinical Nursing International Journal of Nursing Studies Journal of Health Psychology Annual Review of Psychology
Table 2 Selection criteria for the articles Inclusion criteria
Exclusion criteria
Articles focused on Living with chronic illness in adults from the patient’s perspective
Articles focused on Living with chronic illness from the family’s/ professional’s perspective because the perspective is different from the patient’s one* Articles focused on self-management programmes because: self-management itself is a different phenomenon and the literature related to Living with chronic illness provides a broader perspective than the literature on self-management programmes (especially linked to self care) Articles focused on a single factor, which influences the process of Living with chronic illness such as depression or fatigue
Literature reviews and studies with qualitative, quantitative or mixed-method approaches
Grey literature such as editorials, brochures or thesis
*It is considered that the studies that present the family’s/professional’s perspective show a different vision from those with a patient perspective because: 1) the family member does not experience the chronic illness in the same circumstances as the patient; 2) in most cases, the relative develops a caregiving role, which influences his/her perceptions; and 3) this analysis will constitute the conceptual basis for the development of an instrument to measure the process of Living with chronic illness on patients.
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Moreover, experts on the matter were queried and reference lists of the selected articles were also reviewed through the snowballing technique, with the aim of identifying additional relevant studies. For further detail see Fig. 2. Finally, a total of 36 articles were included and reviewed for this concept analysis. The review process started with an individual and complete analysis and synthesis of the 36 articles. Each paper was content analysed, looking for antecedents, consequences and attributes (Rodgers 2000). After completing this analysis, descriptive/data-driven themes emerged as attributes of the concept of Living with chronic illness (Thomas & Harden 2008). Also concepts were translated from one study to another, using descriptive codes or creating new ones, starting the process of synthesis. Connections between these codes were created to group them into more general themes, which were the attributes of the concept of Living with chronic illness. These attributes were validated with three nursing experts. The appraisal of the methodological quality of the papers took place following the criteria of methodological quality established by the Joanna Briggs Institute, (http://www.jbic onnectplus.org/). The use of this guide has been deemed appropriate because of its accuracy and clarity. Finally, a typology of ways of Living with chronic illness was emerged based on the development of analytical/theory-driven themes (Thomas & Harden 2008). This typology was also discussed in group sessions with a team of researchers from the areas of nursing, medicine, psychology and sociology.
Results In this section, findings emerging from the analysis will be presented based on the steps suggested by Rodgers’ evolutionary method, which has already been depicted in table 1 (Rodgers 2000). Steps 1 and 2 have been already covered in the introduction and background sections.
Step 3. Collect relevant data to identify the attributes and the contextual basis of the concept According to Rodgers’ evolutionary method (Rodgers 2000), in this step the attributes, the antecedents and consequences of Living with chronic illness that have been extracted from the literature review are presented. Step 3.1. Defining attributes From the 36 studies analysed, it can be stated that the concept of Living with chronic illness in adults has five main attributes, which are: Acceptance, Coping, Self-management, Integration and Adjustment. As is explained below and illustrated in Fig. 3, these attributes have a dynamic and nonlinear nature, which involves advances and setbacks. Acceptance. Of the 36 studies reviewed, 13 identified Acceptance as one of the attributes of the process of Living with chronic illness (Kralik et al. 2004, 2005, Delmar et al. 2005, Telford et al. 2006, Lundman & Jansson 2007, Simmons et al. 2007, Stanton et al. 2007, Wann-Hansson
Step 1. Papers after application of limits in databases Medline (PubMed): 278
Cinahl (Ebsco): 4,612
Cochrane Library: 2,650
PsycInfo (Ovid): 3,269
LIMITS
Embase:
Cuiden:
Dialnet:
Scielo:
841
2
50
80
Language: English/ Spanish Interval of years of publications: 2000-2014 Adults: 18 or over
Step 2. Papers selected after reading title and abstract in databases Medline (PubMed): 2
Cinahl (Ebsco): 75
Cochrane Library: 2
PsycInfo (Ovid): 25
Embase:
Cuiden:
Dialnet:
Scielo:
23
0
2
4
Step 3. Papers selected from databases after application of inclusion criteria Medline (PubMed): 0
Cinahl (Ebsco): 5
Cochrane Library: 0
PsycInfo (Ovid): 12
Embase:
Cuiden:
Dialnet:
Scielo:
4
0
0
1
Step 4. Additional search sources hits plus total articles included from databases Snowballing technique: 7
Manual search: 5
Experts: 2
Total articles from databases: 22
TOTAL PAPERS FOR REVIEW: 36
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Figure 2 Search strategy.
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Moreover, experts on the matter were queried and reference lists of the selected articles were also reviewed through the snowballing technique, with the aim of identifying additional relevant studies. For further detail see Fig. 2. Finally, a total of 36 articles were included and reviewed for this concept analysis. The review process started with an individual and complete analysis and synthesis of the 36 articles. Each paper was content analysed, looking for antecedents, consequences and attributes (Rodgers 2000). After completing this analysis, descriptive/data-driven themes emerged as attributes of the concept of Living with chronic illness (Thomas & Harden 2008). Also concepts were translated from one study to another, using descriptive codes or creating new ones, starting the process of synthesis. Connections between these codes were created to group them into more general themes, which were the attributes of the concept of Living with chronic illness. These attributes were validated with three nursing experts. The appraisal of the methodological quality of the papers took place following the criteria of methodological quality established by the Joanna Briggs Institute, (http://www.jbic onnectplus.org/). The use of this guide has been deemed appropriate because of its accuracy and clarity. Finally, a typology of ways of Living with chronic illness was emerged based on the development of analytical/theory-driven themes (Thomas & Harden 2008). This typology was also discussed in group sessions with a team of researchers from the areas of nursing, medicine, psychology and sociology.
Results In this section, findings emerging from the analysis will be presented based on the steps suggested by Rodgers’ evolutionary method, which has already been depicted in table 1 (Rodgers 2000). Steps 1 and 2 have been already covered in the introduction and background sections.
Step 3. Collect relevant data to identify the attributes and the contextual basis of the concept According to Rodgers’ evolutionary method (Rodgers 2000), in this step the attributes, the antecedents and consequences of Living with chronic illness that have been extracted from the literature review are presented. Step 3.1. Defining attributes From the 36 studies analysed, it can be stated that the concept of Living with chronic illness in adults has five main attributes, which are: Acceptance, Coping, Self-management, Integration and Adjustment. As is explained below and illustrated in Fig. 3, these attributes have a dynamic and nonlinear nature, which involves advances and setbacks. Acceptance. Of the 36 studies reviewed, 13 identified Acceptance as one of the attributes of the process of Living with chronic illness (Kralik et al. 2004, 2005, Delmar et al. 2005, Telford et al. 2006, Lundman & Jansson 2007, Simmons et al. 2007, Stanton et al. 2007, Wann-Hansson
Step 1. Papers after application of limits in databases Medline (PubMed): 278
Cinahl (Ebsco): 4,612
Cochrane Library: 2,650
PsycInfo (Ovid): 3,269
LIMITS
Embase:
Cuiden:
Dialnet:
Scielo:
841
2
50
80
Language: English/ Spanish Interval of years of publications: 2000-2014 Adults: 18 or over
Step 2. Papers selected after reading title and abstract in databases Medline (PubMed): 2
Cinahl (Ebsco): 75
Cochrane Library: 2
PsycInfo (Ovid): 25
Embase:
Cuiden:
Dialnet:
Scielo:
23
0
2
4
Step 3. Papers selected from databases after application of inclusion criteria Medline (PubMed): 0
Cinahl (Ebsco): 5
Cochrane Library: 0
PsycInfo (Ovid): 12
Embase:
Cuiden:
Dialnet:
Scielo:
4
0
0
1
Step 4. Additional search sources hits plus total articles included from databases Snowballing technique: 7
Manual search: 5
Experts: 2
Total articles from databases: 22
TOTAL PAPERS FOR REVIEW: 36
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Figure 2 Search strategy.
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problem-focused strategies. Both types of strategies are deemed necessary to promote the attribute of Coping as it was previously stated by (Lazarus & Folkman 1984). The former makes reference to mechanisms for the control of emotional responses, which a person experiences when facing a chronic illness. The latter makes reference to the mechanisms which favour, or make possible, a change in the situation. From a qualitative research perspective, some authors such as Kralik et al. (2004) use the concepts of Coping and Self-management interchangeably. Nevertheless, in the present concept analysis, such an approach is considered inadequate. As shown above, Coping entails learning to tackle the consequences of an illness and initiating strategies when dealing with the adversity that this involves. Self-management, in turn, is considered a more advanced attribute (see below). Therefore, Coping is presented as an intermediate attribute, placed between Acceptance and Self-management as explained in the following section (see Fig. 3). Self-management. Twenty out of the 36 reviewed studies identified Self-management as a defining attribute of Living with chronic illness (Whittemore & Roy 2002, Whittemore et al. 2002, Lorig & Holman 2003, Koch et al. 2004, Kralik et al. 2004, 2005, 2006, Delmar et al. 2006, Fraser et al. 2006, Lundman & Jansson 2007, Olsson et al. 2008, Simmons et al. 2007, Whittemore & Dixon 2008, Yu et al. 2008, Handley et al. 2010, Maher & De Vries 2011, Udlis 2011, Disler et al. 2012, Schulman-Green et al. 2012, Cooney et al. 2013). As stated before, Self-management is considered the next attribute in the process (see Fig. 3) because, apart from learning to endure the illness and initiating different strategies, it also implies having some knowledge about the illness itself, adhering to a plan and actively participating in the decision-making that an illness involves (Whittemore & Dixon 2008, Yu et al. 2008). In particular, in this concept analysis, Self-management is conceived as an attribute, which also implies a ‘dynamic active process of learning, practising and exploring the skills necessary to create a healthy and emotionally satisfying life’ (Whittemore & Dixon 2008, p. 178). In other words, it is deemed an attribute through which people suffering from chronic illness take responsibility over their own health in a proactive manner, to know what to do and how to manage the illness (Whittemore et al. 2002, Whittemore & Dixon 2008). This perception of Self-management is the result of seminal works carried out mainly by Corbin & Strauss in the 1980s (Corbin & Strauss 1985, 1987). With reference to this, Self-management is presented as an intermediary attribute
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between Coping and Integration as explained in the following section (see Fig. 3). Integration. The attribute of Integration has been identified in 14 of the 36 studies reviewed for this concept analysis (Whittemore & Roy 2002, Whittemore et al. 2002, Emery 2003, Fraser et al. 2006, Kralik et al. 2006, Kralik & Van Loon 2007, 2009, Olsson et al. 2008, Stanton et al. 2007, Whittemore & Dixon 2008, Handley et al. 2010, Kneck et al. 2012, Portillo et al. 2012, Schulman-Green et al. 2012). Integration is considered to be the next attribute of Living with chronic illness because apart from having some knowledge, adhering to a plan, and actively participating in informed decision-making, also implies making changes in life to search for ‘a new normal’ (see Fig. 3). This attribute was reported to take place by ‘reconciling emotions, establishing a structure, striving for satisfaction, exploring self and conflicts, discovering balance and developing a new cadence to life’ (Whittemore & Dixon 2008, p. 179). Furthermore, Integration is presented as a complex and multidimensional attribute, mainly determined by generating a process of change in the person’s lifestyle to finally adjust to the illness (Whittemore & Dixon 2008, Schulman-Green et al. 2012). In a qualitative study, Schulman-Green et al. (2012) argue that through the attribute of Integration, several skills and strategies are developed to successfully introduce the illness into the person’s life. Some of these strategies could be the reorganisation of daily life by creating a routine with respect to illness and according to it, or seeking new social activities. Additionally, and based on the characteristics of Integration as an attribute, the present study claims that this attribute is necessary for Adjustment to happen, which is the following and last attribute of Living with chronic illness, as is explained in the following section. Adjustment. Adjustment has been identified in 19 of the 36 reviewed studies, and in the literature is perceived as the last attribute of the concept (Kralik 2002, Whittemore & Roy 2002, Delmar et al. 2005, Kralik et al. 2005, 2006, Fraser et al. 2006, Sharpe & Curran 2006, Telford et al. 2006, Kralik & Van Loon 2007, 2009, Simmons et al. 2007, Stanton et al. 2007, Wann-Hansson et al. 2008, Whittemore & Dixon 2008, Yu et al. 2008, Maher & De Vries 2011, Kneck et al. 2012, Portillo et al. 2012, Schulman-Green et al. 2012). Adjustment is a more encompassing attribute than Integration because, along with searching for a ‘new normal’ in life and generating a modification in lifestyle, it also entails © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2357–2367
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a progressive process of transformation of the person’s selfidentity as the illness also forms part of it. In this way, Whittemore and Dixon (2008) presented that Integration is a prior characteristic to finally adjust to chronic illness. Therefore, Schulman-Green et al. (2012) in a systematic review argue that this attribute refers to the functions and skills that contribute to coming to terms with a life change and an evolvement of the identity of the person as a result of the illness. Adjustment implies adapting to both the illness and the evolvement of the person’s identity, with the final desired target being to achieve ‘Positive living’ with the chronic illness (Schulman-Green et al. 2012, Ambrosio et al. 2014). According to the literature, these five attributes of this concept are dynamic with advances and setbacks, and of a dependent and progressive nature, and this clearly highlights that Living with chronic illness needs to be understood as a process whose final target is to achieve ‘Positive living’ with chronic illness. ‘Positive living’ in this concept analysis is comprised as the final desired goal of Living with chronic illness in adults when they achieve the necessary attributes to live a normal life according to his/her new situation and/or context (Ambrosio et al. 2014). The attributes are considered dependent because they cannot exist in isolation. For example, the first attribute to achieve ‘Positive living’ with chronic illness is Acceptance which is in most cases followed by the attribute of Coping. Despite this, having a given order does not necessarily imply that Living with chronic illness is a rigid process. Each individual experiences his/her reality and the process of Living with chronic illness in a particular way (Portillo et al. 2012, Ambrosio et al. 2014) and for this reason, individualising knowledge according to each individual’s experience becomes essential. Step 3.2. Antecedents and consequences Following Rodgers evolutionary method (Rodgers 2000), the antecedents and consequences of a concept were identified by reviewing the literature and highlighting key information of the papers that alluded to events that happened before and after the process. Five antecedents of the concept of Living with chronic illness in adults have been identified: (1) being aware of the situation of change created by a chronic disease, antecedent referring to how the experience of the process is previously perceived and understood (Meleis et al. 2000, Cooney et al. 2013); (2) personal networks which encompass support systems created to establish a process of decision-making according to the person’s health and well-being (Simmons et al. 2007, Schulman-Green et al. 2012, Cooney et al. © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2357–2367
Living with chronic illness
2013); (3) information and education about the chronic illness (Olsson et al. 2008, Handley et al. 2010, Udlis 2011); (4) personal conditions, antecedent referring to the person’s meanings, beliefs and attitudes, socioeconomic state and preparation and expertise (Meleis et al. 2000, Portillo et al. 2012); and (5) attitude to life despite the illness (Stanton et al. 2007, Disler et al. 2012). Furthermore, five main consequences of the concept of Living with chronic illness (considering that Living with chronic illness as a process could be successful or not) have been identified: (1) degree of control (Delmar et al. 2006, Wann-Hansson et al. 2008, Kneck et al. 2012); (2) degree of mastery (Kralik et al. 2006, Handley et al. 2010, Cooney et al. 2013); (3) degree of normality (Fraser et al. 2006, Maher & De Vries 2011); (4) degree of balance (Kralik et al. 2004, Whittemore & Dixon 2008, Disler et al. 2012); and (5) impact on quality of life and well-being (Olsson et al. 2008, Kralik & Van Loon 2009, Udlis 2011).
Discussion In the present concept analysis, Living with chronic illness in adults is conceived as a complex, dynamic, cyclical and multidimensional process with the final desired target being to achieve ‘Positive living’ (see Fig. 3). It is considered complex because it generates changes in all aspects of the person’s life; dynamic because it moves along time; cyclical because it fluctuates by means of advances and setbacks throughout the experience and multidimensional because it includes different attributes (Kralik 2005, Kralik & Van Loon 2009). In particular, these findings illustrate that Living with chronic illness is a process, which incorporates five attributes: Acceptance, Coping, Self-management, Integration and Adjustment. None of the 36 studies analysed identifies the five attributes, which somehow shows the lack of consensus existing in the literature on the reviewed concept. Based on the literature, a pattern of significant progression has been identified. This could be used as a framework of reference to compare with each person’s individual experience and in this way, to illustrate relevant action. To be precise, depending on how patients develop these attributes, different outcomes of the process will be achieved and a classification of different ways of Living with chronic illness could be drawn. As it has been explained in the methodological section, based on these findings, previous research of the authors (Portillo et al. 2012, Ambrosio et al. 2014) and an in-depth team discussion, analytical/ theory driven themes were created and proposed as a typology of different ways of Living with chronic illness.
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Although there is limited literature to support this emerging typology, it is a first conceptual leap in stimulating and developing more thinking on Living with chronic illness.
A proposed typology of Ways of Living with Chronic Illness (step 4 of the concept analysis) After the analysis of the data emerged in Step 3 (Rodgers 2000), an emerging typology to introduce and analyse different ways of Living with chronic illness is proposed (see Fig. 3). In this typology, ‘ways of living’ refer to possible outcomes of the process as a result of how the five attributes occur and develop. In particular, four existing ways of living as the result of the process are proposed and explained below and are summarised in Table 3: (1) Disavowal, (2) False Normality, (3) The New Normal and (4) Disruption. Way 1 of Living with chronic illness: Disavowal Disavowal is a way of living in which the person experiences a lack of control and balance in his/her life. Regarding this, other authors (Emery 2003, Kralik et al. 2006, Telford et al. 2006) have previously identified the stage of extraordinariness, which seems similar to this way of living in terms of experiencing a situation of stress and frustration in which the illness is not part of his/her life because no attribute has been achieved (see Fig. 3). The person could experience this way of living at the beginning of the process after the diagnosis of the disease and also at any other stage of the illness if the attributes have not been developed adequately (i.e. Acceptance).
Way 2 of Living with chronic illness: False Normality False Normality is a way of living in which the person experiences a partial control and balance in his/her life (see Fig. 3). This way of living has been previously identified as ‘strained co-existence’ by Cooney et al. (2013) in a grounded theory study with 26 patients with chronic obstructive pulmonary disease. It is interesting to note that achieving False Normality could be the result of developing some of the attributes presented in this concept analysis such as Self-management but not all of them. Consequently, in this case, the patient could have gained experiential knowledge through the years, and seemed to maintain certain control over activities of daily living, such as symptoms and medication, and thus could have a normalised life. In contrast, when reaching False Normality, a lack of acknowledgement and Acceptance of the disease is also evident (the attribute of Acceptance has not been developed beforehand). Therefore, the process of Living with chronic illness to achieve ‘Positive living’ has not been fully completed and the gaps of the process lead to False Normality. This way of living could be long-lasting but its apparent balance is not sustainable in time. More precisely, it will be vulnerable to some distressing factors, which could lead to Disruption (see way of living 4) and cause a loss of balance. Way 3 of Living with chronic illness: The New Normal In The New Normal, the person lives a normal life because he/she has achieved the attribute of Acceptance and has developed the necessary additional attributes to reach the final goal ‘Positive living’ with chronic illness, according to their situation and/or context (see Fig. 3). Other authors
Table 3 Summary of the proposed typology Ways of Living with chronic illness Disavowal
False Normality
The New Normal
Disruption
Main characteristics
No Acceptance Lack of control and balance Long-lasting
No Acceptance Partial control and balance Long-lasting Vulnerable to Disruption
Acceptance developed Total control and balance Long-lasting Less vulnerable to Disruption
Similarities with the literature
Lack of Acceptance When?: At any stage of the process What involves?: Stress and frustration
Lack of Acceptance When?: At any stage of the process What involves?: Experiential knowledge
Differences with the literature
Outcome vs. stage Different name: Extraordinariness
Outcome vs. stage Different name: Strained co-existence
Meaning given to life Normalisation When?: At the end of the process What involves?: Adjustment achieved Outcome vs. stage Different name: Ordinariness
Acceptance needed again Control and balance Breakdown Temporary (caused by distressing factors) Gap in the literature
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Gap in the literature
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problem-focused strategies. Both types of strategies are deemed necessary to promote the attribute of Coping as it was previously stated by (Lazarus & Folkman 1984). The former makes reference to mechanisms for the control of emotional responses, which a person experiences when facing a chronic illness. The latter makes reference to the mechanisms which favour, or make possible, a change in the situation. From a qualitative research perspective, some authors such as Kralik et al. (2004) use the concepts of Coping and Self-management interchangeably. Nevertheless, in the present concept analysis, such an approach is considered inadequate. As shown above, Coping entails learning to tackle the consequences of an illness and initiating strategies when dealing with the adversity that this involves. Self-management, in turn, is considered a more advanced attribute (see below). Therefore, Coping is presented as an intermediate attribute, placed between Acceptance and Self-management as explained in the following section (see Fig. 3). Self-management. Twenty out of the 36 reviewed studies identified Self-management as a defining attribute of Living with chronic illness (Whittemore & Roy 2002, Whittemore et al. 2002, Lorig & Holman 2003, Koch et al. 2004, Kralik et al. 2004, 2005, 2006, Delmar et al. 2006, Fraser et al. 2006, Lundman & Jansson 2007, Olsson et al. 2008, Simmons et al. 2007, Whittemore & Dixon 2008, Yu et al. 2008, Handley et al. 2010, Maher & De Vries 2011, Udlis 2011, Disler et al. 2012, Schulman-Green et al. 2012, Cooney et al. 2013). As stated before, Self-management is considered the next attribute in the process (see Fig. 3) because, apart from learning to endure the illness and initiating different strategies, it also implies having some knowledge about the illness itself, adhering to a plan and actively participating in the decision-making that an illness involves (Whittemore & Dixon 2008, Yu et al. 2008). In particular, in this concept analysis, Self-management is conceived as an attribute, which also implies a ‘dynamic active process of learning, practising and exploring the skills necessary to create a healthy and emotionally satisfying life’ (Whittemore & Dixon 2008, p. 178). In other words, it is deemed an attribute through which people suffering from chronic illness take responsibility over their own health in a proactive manner, to know what to do and how to manage the illness (Whittemore et al. 2002, Whittemore & Dixon 2008). This perception of Self-management is the result of seminal works carried out mainly by Corbin & Strauss in the 1980s (Corbin & Strauss 1985, 1987). With reference to this, Self-management is presented as an intermediary attribute
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between Coping and Integration as explained in the following section (see Fig. 3). Integration. The attribute of Integration has been identified in 14 of the 36 studies reviewed for this concept analysis (Whittemore & Roy 2002, Whittemore et al. 2002, Emery 2003, Fraser et al. 2006, Kralik et al. 2006, Kralik & Van Loon 2007, 2009, Olsson et al. 2008, Stanton et al. 2007, Whittemore & Dixon 2008, Handley et al. 2010, Kneck et al. 2012, Portillo et al. 2012, Schulman-Green et al. 2012). Integration is considered to be the next attribute of Living with chronic illness because apart from having some knowledge, adhering to a plan, and actively participating in informed decision-making, also implies making changes in life to search for ‘a new normal’ (see Fig. 3). This attribute was reported to take place by ‘reconciling emotions, establishing a structure, striving for satisfaction, exploring self and conflicts, discovering balance and developing a new cadence to life’ (Whittemore & Dixon 2008, p. 179). Furthermore, Integration is presented as a complex and multidimensional attribute, mainly determined by generating a process of change in the person’s lifestyle to finally adjust to the illness (Whittemore & Dixon 2008, Schulman-Green et al. 2012). In a qualitative study, Schulman-Green et al. (2012) argue that through the attribute of Integration, several skills and strategies are developed to successfully introduce the illness into the person’s life. Some of these strategies could be the reorganisation of daily life by creating a routine with respect to illness and according to it, or seeking new social activities. Additionally, and based on the characteristics of Integration as an attribute, the present study claims that this attribute is necessary for Adjustment to happen, which is the following and last attribute of Living with chronic illness, as is explained in the following section. Adjustment. Adjustment has been identified in 19 of the 36 reviewed studies, and in the literature is perceived as the last attribute of the concept (Kralik 2002, Whittemore & Roy 2002, Delmar et al. 2005, Kralik et al. 2005, 2006, Fraser et al. 2006, Sharpe & Curran 2006, Telford et al. 2006, Kralik & Van Loon 2007, 2009, Simmons et al. 2007, Stanton et al. 2007, Wann-Hansson et al. 2008, Whittemore & Dixon 2008, Yu et al. 2008, Maher & De Vries 2011, Kneck et al. 2012, Portillo et al. 2012, Schulman-Green et al. 2012). Adjustment is a more encompassing attribute than Integration because, along with searching for a ‘new normal’ in life and generating a modification in lifestyle, it also entails © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2357–2367
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Disclosure
Funding
The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/eth ical_1author.html), as follows: (1) substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; (2) drafting the article or revising it critically for important intellectual content and (3) final approval of the version to be published.
No specific grant from any funding agency in the public, commercial or not-for-profit sectors has been received at this stage.
Conflict of interest No conflict of interest has been declared by the authors.
References Ambrosio L, Navarta MV & Portillo MC (2014) Promoting a Positive Living with Parkinson’s disease in the community: adequacy of assessments and interventions. Primary Health Care 24, 26–29 (article in press). Bury M (1982) Chronic illness as biographical disruption. Sociology of Health & Illness 4, 167–182. Charmaz K (1983) Loss of self: a fundamental form of suffering in the chronically ill. Sociology of Health & Illness 5, 168–195. Cooney A, Mee L, Casey D, Murphy K, Kirwan C, Burke E, Conway Y, Healy D, Mooney B, Murphy J & the PRINCE team (2013) Life with chronic obstructive pulmonary disease: striving for “controlled co-existence”. Journal of Clinical Nursing 22, 986–995. Corbin J & Strauss A (1985) Managing chronic illness at home: three lines of work. Qualitative Sociology 8, 224–247. Corbin J & Strauss A (1987) Accompaniments of chronic illness: changes in body, self, biography, and biographical time. Research in the Sociology of Health Care 6, 249–281. Delmar C, Boje T, Dylmer D, Forup L, Jakobsen C, Moller M, Sonder H & Pedersen B (2005) Achieving harmony with oneself: life with a chronic illness. Scandinavian Journal of Caring Sciences 19, 204–212. Delmar C, Boje T, Dylmer D, Forup L, Jakobsen C, Moller M, Sonder H & Pedersen BD (2006) Independence/ dependence –a contradictory relationship? Life with a chronic illness. Scandinavian Journal of Caring Sciences 20, 261–268.
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Disler RT, Gallagher RD & Davidson PM (2012) Factors influencing self-management in chronic obstructive pulmonary disease: an integrative review. International Journal of Nursing Studies 49, 230–242. Emery C (2003) Women living with chronic illness experienced transition that involved stages of distress and a quest for ordinariness. Evidence Based Nursing 6, 63. Fraser DD, Kee CC & Minick P (2006) Living with chronic obstructive pulmonary disease: insiders’ perspectives. Journal of Advanced Nursing 55, 550–558. Handley J, Pullon S & Gifford H (2010) Living with type 2 diabetes: “Putting the person in the pilots’ seat”. Australian Journal of Advanced Nursing 27, 12–19. Kneck A, Klang B & Fagerberg I (2012) Learning to live with diabetes –integrating an illness or objectifying a disease. Journal of Advanced Nursing 68, 2486–2495. Koch T, Jenkin P & Kralik D (2004) Chronic illness self-management: locating the “self”. Journal of Advanced Nursing 48, 484–492. Kralik D (2002) The quest for ordinariness: transition experienced by midlife women living with chronic illness. Journal of Advanced Nursing 39, 146–154. Kralik D (2005) “Moving on”: the transition to living well with chronic illness. Australian Journal of Holistic Nursing 12, 13–20. Kralik D & Van Loon A (2007) Understanding transition in chronic illness. Australian Nursing Journal 15, 29.
Kralik D & Van Loon A (2009) Editorial: Transition and chronic illness experience. Journal of Nursing and Healthcare of Chronic Illness 1, 113–115. Kralik D, Koch T, Price K & Howard N (2004) Chronic illness self-management: taking action to create order. Journal of Clinical Nursing 13, 259– 267. Kralik D, Telford K, Price K & Koch T (2005) Women’s experiences of fatigue in chronic illness. Journal of Advanced Nursing 52, 372–380. Kralik D, Visentin K & Van Loon A (2006) Transition: a literature review. Journal of Advanced Nursing 55, 320–329. Lazarus RS & Folkman S (1984) Stress, Appraisal and Coping. Springer Publishing Company, New York, NY. Lobo VM, Fisher A, Ploeg J, Peachey G & Akhtar-Danesh N (2013) A concept analysis of nursing overtime. Journal of Advanced Nursing 69, 2401–2412. Lorig KR & Holman HR (2003) Self-Management Education: history, definition, outcomes, and mechanisms. Annals of Behavioral Medicine 26, 1–7. Lundman B & Jansson L (2007) The meaning of living with a long-term disease. To revalue and be revalued. Journal of Nursing and Healthcare of Chronic illness 16, 109–115. Maher K & De Vries K (2011) An exploration of the lived experiences of individuals with relapsed Multiple Myeloma. European Journal of Cancer Care 20, 267–275. Meleis AI, Sawyer L, In E, Schumacher K & Messias D (2000) Experiencing transitions: an emerging middle range theory. Advances in Nursing Science 23, 12–28.
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Review Olsson M, Lexell J & S€ oderberg S (2008) The meaning of Women’s experiences of living with Multiple Sclerosis. Health Care for Women International 29, 416–430. Paterson BL (2001) The shifting perspectives model of chronic illness. Journal of Nursing Scholarship 33, 21–26. Portillo MC, Senosiain JM, Arantzamendi M, Zaragoza A, Navarta MV, Dıaz de Cerio S, Riverol M, Martınez E, Luquin MR, Urs ua ME, Corch on S & Moreno V (2012) Proyecto ReNACE. Convivencia de pacientes y familiares con la enfermedad de Parkinson: resultados preliminares de la Fase I. Revista cientıfica de la Sociedad Espa~ nola de Enfermerıa Neurol ogica 36, 31–38. Rodgers BL (2000) Concept analysis: an evolutionary view. In Concept Development in Nursing. (Rodgers BL & Knafl KA eds). WB Saunders Company, Philadelphia, US, PA, pp. 77– 102. Schulman-Green D, Jaser S, Martin F, Alonzo A, Grey M, McCorkle R, Redeker NS, Reynolds N & Whittemore R (2012) Process of self-management in chronic illness. Journal of Nursing Scholarship 44, 136–144. Sharpe L & Curran L (2006) Understanding the process of adjustment to illness. Social Science & Medicine 62, 1153–1166.
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Living with chronic illness Simmons KL, Smith JA, Bobb K-A & Liles LLM (2007) Adjustment to colostomy: stoma acceptance, stoma care self-efficacy and interpersonal relationships. Journal of Advanced Nursing 60, 627–635. Stanton AL, Revenson TA & Tennen H (2007) Health Psychology: psychological adjustment to chronic disease. Annual Review of Psychology 58, 565–592. Stewart DC & Sullivan TJ (1982) Illness behaviour and the sick role in chronic disease. Social Science & Medicine 16, 1397–1404. Strauss AL & Glaser BG (1975) Chronic Illness and the Quality of Life. Mosby, St. Louis, MO. Telford K, Kralik D & Koch T (2006) Acceptance and denial: implications for people adapting to chronic illness: literature review. Journal of Advanced Nursing 55, 457–464. The Joanna Briggs Institute. Available from:http://www.jbiconnectplus.org/ (accessed 20 June 2013). Thomas J & Harden A (2008) Methods for the thematic synthesis of qualitative research in systematic reviews. BioMed Central Medical Research Methodology 8, 1–10. Udlis KA (2011) Self-management in chronic illness: concept and dimensional analysis. Journal of Nursing
and Healthcare of Chronic Illness 3, 130–139. Wann-Hansson C, Rahm I, Klevsgard R & Andersson E (2008) The longterm experience of living with peripheral arterial disease and the recovery following revascularisation: a qualitative study. International Journal of Nursing Studies 45, 552– 561. Whittemore R & Dixon J (2008) Chronic illness: the process of integration. Journal of Nursing and Healthcare of Chronic illness 17, 177– 187. Whittemore R & Roy SC (2002) Adapting to diabetes mellitus: a theory synthesis. Nursing Science Quarterly 15, 311–317. Whittemore R, Chase SK, Mandle CL & Roy SC (2002) Lifestyle change in type 2 diabetes. A process Model. Nursing Research 51, 18–25. World Health Organization (WHO) (2005) Noncommunicable Diseases. Available from:http://www.who.int/topics/chron ic_diseases/en/(accessed 28 May 2014). Yu D, Lee D, Kwong A, Thompson D & Woo J (2008) Living with chronic heart failure: a review of qualitative studies of older people. Journal of Advanced Nursing 61, 474–483.
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Living with chronic illness in adults: a concept analysis Leire Ambrosio, Juana Maria Senosiain Garcıa, Mario Riverol Fern andez, Sagrario Anaut Bravo, Sara Dıaz De Cerio Ayesa, Marıa Eugenia Urs ua Sesma, Neus Caparr os and Mari Carmen Portillo
Aims and objectives. To report an analysis of the concept of Living with chronic illness in adults, using Rodger’s evolutionary analytical methodology. Background. In the literature, several qualitative studies exist that address the question of Living with chronic illness from the adult patient’s perspective. However, the lack of clarity and consensus among the existing studies renders this concept ambiguous when it is analysed in depth. Design. A narrative review. Methods. A systematic search has been carried out on electronic databases such as Medline (PubMed), Cinahl (Ebsco), Cochrane Library, PsycINFO (Ovid), Embase, Cuiden, Dialnet and Scielo. This was limited to articles published in either Spanish or English, from 2003–2013. Results. Living with chronic illness is a complex, dynamic, cyclic and multidimensional process, and involves the development of five different attributes: Acceptance, Coping, Self-management, Integration and Adjustment. Depending on how these attributes operate, there are four different ways of living which can result from the process of Living with chronic illness: (1) Disavowal, (2) False Normality, (3) The New Normal and (4) Disruption. Conclusions. This paper contributes to the understanding of the concept ‘Living with chronic illness’. Findings in this analysis have to be evaluated with caution and further research is needed on this topic to confirm them. Also, more studies in evaluating how patients live a long-term condition are recommended to foster patient-centred care. Relevance to clinical practice. Findings generated from this concept analysis can raise awareness of Living with chronic illness so that this process could be assessed in a correct and uniform way in the clinical community and improved when needed.
What does this paper contribute to the wider global clinical community?
• Findings generated from this
•
concept analysis can raise awareness of the concept Living with chronic illness so that nurses could be assessed by this process in a correct and uniform way in the clinical community and improved towards a ‘Positive living’ when needed. The identification of attributes, antecedents, consequences and ways of living can serve as a guide in the development of instruments to measure how people live with chronic illness in community practice and the application of those instruments in clinical practice.
Key words: adults, concept analysis, Living with chronic illness, nursing, Rodgers Accepted for publication: 17 February 2015
Authors: Leire Ambrosio, MSc, BSc, RN, PhD student, Department of Adult Nursing, School of Nursing, University of Navarre, Pamplona; Juana Maria Senosiain Garcıa, BSc, RN, Lecturer, Department of Adult Nursing, School of Nursing, University of Navarre, Pamplona; Mario Riverol Fernandez, PhD, MD, Neurologist, Department of Neurology, Clınica Universidad de Navarra, University of Navarre, Pamplona; Sagrario Anaut Bravo, PhD, Professor, Department of Social Work, Public University of Navarre, Pamplona; Sara Dıaz De Cerio Ayesa, SW (Social Worker), Coordinator of Parkinson Association of Navarre, Pamplona; Marıa Eugenia Urs ua Sesma, MD, General Practitioner, Director of San Juan Pri-
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2357–2367, doi: 10.1111/jocn.12827
mary Health Centre, Pamplona; Neus Caparr os, PhD, Professor. Law Department, La Rioja University, Logro~ no, Pamplona Mari Carmen Portillo, PhD, MSc, BSc, Associate Professor, Department of Adult Nursing, School of Nursing, University of Navarre, Pamplona, Spain Correspondence: Mari Carmen Portillo, Associate Professor, Escuela Universitaria de Enfermerıa Universidad de Navarra, C/ Irunlarrea, s/n, Edif. De los Casta~ nos, 31008 Pamplona, Navarra, Spain. Telephone: +34 948 42 56 45. E-mail: [email protected] twitter: @mcportillov
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Introduction Demographic changes happening in the 20th century in the western world such as ageing and an increase in life expectancy have provoked a significant growth in chronic illnesses in today’s society (WHO 2005). In particular, chronic diseases have become the main health-related issue (WHO 2005). The term chronic illness is defined as a process of ‘long duration and generally slow progression that requires ongoing management over a period of years or decades’ (WHO 2005). Several studies show that having one or more chronic diseases does not only affect the physical state of an individual but also other contexts in their lives as well, such as the emotional and social ones (Portillo et al. 2012). In this respect, healthcare professionals need to adopt a holistic approach so that all aspects of the person, understood as a bio-psychosocial and spiritual being, are addressed (Portillo et al. 2012). Healthcare practitioners and, in particular, nurses play an essential role and need to reconsider daily practices to develop patient-centred care, focusing on the person and not on the disease (WHO 2005, Portillo et al. 2012). In other words, nurses need to know and understand what every illness holds for the patient. Understanding how a person lives with illness is necessary to provide care according to the individual’s needs. This concept analysis constitutes the first methodological step and the conceptual base for the development of a measuring scale of the degree of Living with chronic illness.
Background The concept, Living with chronic illness, emerged in the mid-1970s with the work carried out by Strauss and Glaser (1975), where the term appeared for the first time. This new concept was a revolution in its time because it created a change in the existing vision which was held about chronic illness until then. It became a starting point for dealing with psychosocial aspects of the illness. Consequently, later studies carried out in the 1980s and 1990s aimed to find out about Living with chronic illness from the patient0 s perspective (Bury 1982, Stewart & Sullivan 1982, Charmaz 1983, Corbin & Strauss 1985, 1987). This conceptual progress has had an important impact on today’s literature and at present, several qualitative studies have been identified in the literature (Koch et al. 2004, Telford et al. 2006, Kralik & Van Loon 2009), which address the patients’ experiences and perceptions of living with different chronic illnesses. There are also qualitative papers showing the factors (i.e. family support, resources or
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personality in terms of optimism) which influence the adaptation to chronic disease (Portillo et al. 2012, Ambrosio et al. 2014). Despite the great number of existing qualitative studies, there are no papers showing the concept of Living with chronic illness. Besides, the lack of clarity and consensus among these studies renders the concept ambiguous and hard to understand among health professionals; as will be shown in this paper. Concept clarification is an important step in developing useful and applicable knowledge in nursing science because it contributes to progress in the classification or characterisation of the concept and allows for its evaluation (Rodgers 2000). Therefore, a concept analysis was undertaken to explore the concept of Living with chronic illness in more detail and consequently, determine if this concept represents a process or an outcome. A concept analysis is defined as ‘a formal, linguistic process that examines the structure, function and application of a concept to elucidate its attributes’ (Lobo et al. 2013, p. 2). Rodgers’ evolutionary concept analysis method (Rodgers 2000) was chosen because it is a rigorous and inductive method and understands concepts as dynamic in time and argues that they are influenced by the context where they are being used, which are characteristics in accordance with the concept of Living with chronic illness in this paper in particular in adults (Rodgers 2000). This method consists of six steps (see Table 1) to clarify the concept so that a
Table 1 Steps for the concept analysis of Living with chronic illness (Rodgers 2000, p. 85) Steps for the concept analysis Step 1 Step 2 Step 3
Step 4
Step 5* Step 6
Identify the concept of interest (see background section) Identify and select an appropriate realm (setting and sample) for data collection. Collect data relevant to identify: Step 3.1 The attributes of the concept (attribute: the core defining qualities of the concept) Step 3.2 The contextual basis of the concept (antecedent and consequential occurrences) Antecedent: the event that precedes the appearance of the concept. Consequence: the event following the concept Analyse data regarding the above characteristics of the concept (integrated in the discussion section). Identify an exemplar of the concept, if appropriate. Identify implications for further development of the concept (integrated in the discussion section).
*Step 5 has not been considered relevant for the focus of this paper.
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2357–2367
Review
deeper understanding within the nursing discipline can be developed.
Aims and methods The aim of this paper was to analyse in depth the concept of Living with chronic illness in adults from the patient’s perspective as it is presented in the literature, using Rodgers’ evolutionary method (2000). To apply this method rigorously and identify and select an appropriate realm for data collection, a review on Medline (PubMed), Cinahl (Ebsco), Cochrane Library, PsycINFO (Ovid), Embase, Cuiden, Dialnet and Scielo databases was carried out. The terms in Fig. 1 were used and combined with ‘OR’ boolean operator for the related search terms referring to the same concept and with ‘AND’ for the different search groups. Furthermore, some words were truncated to encompass all possible endings. The following limits were applied to the search: Articles published in either English or Spanish. Articles published between 2000–2014. Articles with adult participants, over 18 years old. The search was restricted to articles published between 2000–2014 so that the review would be up to date. Apart from this, seminal works carried out in this area were also consulted and used when relevant. The age range of participants in the studies was also set at a limit because Living with chronic illness differs between children and adults. In particular, children face distinctly different challenges associated with developmental stages and parental relationships
Liv* with Liv* experience Life experience Everyday liv* Everyday life Coexistence Liv* together Life together Adjust* Adaptat* Transition* Integrat* Meaning* Chronic illness* Chronic disease* Long term condition* Chronic condition* Long term illness* Figure 1 Key terms.
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2357–2367
Living with chronic illness
in their daily living (Paterson 2001). Finally, it is also important to note that in this concept analysis, the chronic illness has not included mental illnesses, as these give rise to a whole set of distinct issues in areas such as Coping (Stanton et al. 2007). Once the search was carried out on electronic databases, the next step was to select the studies. First, their title and abstract were read, and those irrelevant to the proposed topic were dismissed. Articles were selected according to the inclusion and exclusion criteria described in Table 2. In addition to the electronic search on databases, a manual review of the table of contents was carried out in the journals most relevant to the topic in international context [actual year (i.e. 2014 issues)]: International journals Journal of Advanced Nursing Chronic illness Journal of Clinical Nursing International Journal of Nursing Studies Journal of Health Psychology Annual Review of Psychology
Table 2 Selection criteria for the articles Inclusion criteria
Exclusion criteria
Articles focused on Living with chronic illness in adults from the patient’s perspective
Articles focused on Living with chronic illness from the family’s/ professional’s perspective because the perspective is different from the patient’s one* Articles focused on self-management programmes because: self-management itself is a different phenomenon and the literature related to Living with chronic illness provides a broader perspective than the literature on self-management programmes (especially linked to self care) Articles focused on a single factor, which influences the process of Living with chronic illness such as depression or fatigue
Literature reviews and studies with qualitative, quantitative or mixed-method approaches
Grey literature such as editorials, brochures or thesis
*It is considered that the studies that present the family’s/professional’s perspective show a different vision from those with a patient perspective because: 1) the family member does not experience the chronic illness in the same circumstances as the patient; 2) in most cases, the relative develops a caregiving role, which influences his/her perceptions; and 3) this analysis will constitute the conceptual basis for the development of an instrument to measure the process of Living with chronic illness on patients.
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Moreover, experts on the matter were queried and reference lists of the selected articles were also reviewed through the snowballing technique, with the aim of identifying additional relevant studies. For further detail see Fig. 2. Finally, a total of 36 articles were included and reviewed for this concept analysis. The review process started with an individual and complete analysis and synthesis of the 36 articles. Each paper was content analysed, looking for antecedents, consequences and attributes (Rodgers 2000). After completing this analysis, descriptive/data-driven themes emerged as attributes of the concept of Living with chronic illness (Thomas & Harden 2008). Also concepts were translated from one study to another, using descriptive codes or creating new ones, starting the process of synthesis. Connections between these codes were created to group them into more general themes, which were the attributes of the concept of Living with chronic illness. These attributes were validated with three nursing experts. The appraisal of the methodological quality of the papers took place following the criteria of methodological quality established by the Joanna Briggs Institute, (http://www.jbic onnectplus.org/). The use of this guide has been deemed appropriate because of its accuracy and clarity. Finally, a typology of ways of Living with chronic illness was emerged based on the development of analytical/theory-driven themes (Thomas & Harden 2008). This typology was also discussed in group sessions with a team of researchers from the areas of nursing, medicine, psychology and sociology.
Results In this section, findings emerging from the analysis will be presented based on the steps suggested by Rodgers’ evolutionary method, which has already been depicted in table 1 (Rodgers 2000). Steps 1 and 2 have been already covered in the introduction and background sections.
Step 3. Collect relevant data to identify the attributes and the contextual basis of the concept According to Rodgers’ evolutionary method (Rodgers 2000), in this step the attributes, the antecedents and consequences of Living with chronic illness that have been extracted from the literature review are presented. Step 3.1. Defining attributes From the 36 studies analysed, it can be stated that the concept of Living with chronic illness in adults has five main attributes, which are: Acceptance, Coping, Self-management, Integration and Adjustment. As is explained below and illustrated in Fig. 3, these attributes have a dynamic and nonlinear nature, which involves advances and setbacks. Acceptance. Of the 36 studies reviewed, 13 identified Acceptance as one of the attributes of the process of Living with chronic illness (Kralik et al. 2004, 2005, Delmar et al. 2005, Telford et al. 2006, Lundman & Jansson 2007, Simmons et al. 2007, Stanton et al. 2007, Wann-Hansson
Step 1. Papers after application of limits in databases Medline (PubMed): 278
Cinahl (Ebsco): 4,612
Cochrane Library: 2,650
PsycInfo (Ovid): 3,269
LIMITS
Embase:
Cuiden:
Dialnet:
Scielo:
841
2
50
80
Language: English/ Spanish Interval of years of publications: 2000-2014 Adults: 18 or over
Step 2. Papers selected after reading title and abstract in databases Medline (PubMed): 2
Cinahl (Ebsco): 75
Cochrane Library: 2
PsycInfo (Ovid): 25
Embase:
Cuiden:
Dialnet:
Scielo:
23
0
2
4
Step 3. Papers selected from databases after application of inclusion criteria Medline (PubMed): 0
Cinahl (Ebsco): 5
Cochrane Library: 0
PsycInfo (Ovid): 12
Embase:
Cuiden:
Dialnet:
Scielo:
4
0
0
1
Step 4. Additional search sources hits plus total articles included from databases Snowballing technique: 7
Manual search: 5
Experts: 2
Total articles from databases: 22
TOTAL PAPERS FOR REVIEW: 36
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Figure 2 Search strategy.
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2357–2367
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Moreover, experts on the matter were queried and reference lists of the selected articles were also reviewed through the snowballing technique, with the aim of identifying additional relevant studies. For further detail see Fig. 2. Finally, a total of 36 articles were included and reviewed for this concept analysis. The review process started with an individual and complete analysis and synthesis of the 36 articles. Each paper was content analysed, looking for antecedents, consequences and attributes (Rodgers 2000). After completing this analysis, descriptive/data-driven themes emerged as attributes of the concept of Living with chronic illness (Thomas & Harden 2008). Also concepts were translated from one study to another, using descriptive codes or creating new ones, starting the process of synthesis. Connections between these codes were created to group them into more general themes, which were the attributes of the concept of Living with chronic illness. These attributes were validated with three nursing experts. The appraisal of the methodological quality of the papers took place following the criteria of methodological quality established by the Joanna Briggs Institute, (http://www.jbic onnectplus.org/). The use of this guide has been deemed appropriate because of its accuracy and clarity. Finally, a typology of ways of Living with chronic illness was emerged based on the development of analytical/theory-driven themes (Thomas & Harden 2008). This typology was also discussed in group sessions with a team of researchers from the areas of nursing, medicine, psychology and sociology.
Results In this section, findings emerging from the analysis will be presented based on the steps suggested by Rodgers’ evolutionary method, which has already been depicted in table 1 (Rodgers 2000). Steps 1 and 2 have been already covered in the introduction and background sections.
Step 3. Collect relevant data to identify the attributes and the contextual basis of the concept According to Rodgers’ evolutionary method (Rodgers 2000), in this step the attributes, the antecedents and consequences of Living with chronic illness that have been extracted from the literature review are presented. Step 3.1. Defining attributes From the 36 studies analysed, it can be stated that the concept of Living with chronic illness in adults has five main attributes, which are: Acceptance, Coping, Self-management, Integration and Adjustment. As is explained below and illustrated in Fig. 3, these attributes have a dynamic and nonlinear nature, which involves advances and setbacks. Acceptance. Of the 36 studies reviewed, 13 identified Acceptance as one of the attributes of the process of Living with chronic illness (Kralik et al. 2004, 2005, Delmar et al. 2005, Telford et al. 2006, Lundman & Jansson 2007, Simmons et al. 2007, Stanton et al. 2007, Wann-Hansson
Step 1. Papers after application of limits in databases Medline (PubMed): 278
Cinahl (Ebsco): 4,612
Cochrane Library: 2,650
PsycInfo (Ovid): 3,269
LIMITS
Embase:
Cuiden:
Dialnet:
Scielo:
841
2
50
80
Language: English/ Spanish Interval of years of publications: 2000-2014 Adults: 18 or over
Step 2. Papers selected after reading title and abstract in databases Medline (PubMed): 2
Cinahl (Ebsco): 75
Cochrane Library: 2
PsycInfo (Ovid): 25
Embase:
Cuiden:
Dialnet:
Scielo:
23
0
2
4
Step 3. Papers selected from databases after application of inclusion criteria Medline (PubMed): 0
Cinahl (Ebsco): 5
Cochrane Library: 0
PsycInfo (Ovid): 12
Embase:
Cuiden:
Dialnet:
Scielo:
4
0
0
1
Step 4. Additional search sources hits plus total articles included from databases Snowballing technique: 7
Manual search: 5
Experts: 2
Total articles from databases: 22
TOTAL PAPERS FOR REVIEW: 36
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Figure 2 Search strategy.
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problem-focused strategies. Both types of strategies are deemed necessary to promote the attribute of Coping as it was previously stated by (Lazarus & Folkman 1984). The former makes reference to mechanisms for the control of emotional responses, which a person experiences when facing a chronic illness. The latter makes reference to the mechanisms which favour, or make possible, a change in the situation. From a qualitative research perspective, some authors such as Kralik et al. (2004) use the concepts of Coping and Self-management interchangeably. Nevertheless, in the present concept analysis, such an approach is considered inadequate. As shown above, Coping entails learning to tackle the consequences of an illness and initiating strategies when dealing with the adversity that this involves. Self-management, in turn, is considered a more advanced attribute (see below). Therefore, Coping is presented as an intermediate attribute, placed between Acceptance and Self-management as explained in the following section (see Fig. 3). Self-management. Twenty out of the 36 reviewed studies identified Self-management as a defining attribute of Living with chronic illness (Whittemore & Roy 2002, Whittemore et al. 2002, Lorig & Holman 2003, Koch et al. 2004, Kralik et al. 2004, 2005, 2006, Delmar et al. 2006, Fraser et al. 2006, Lundman & Jansson 2007, Olsson et al. 2008, Simmons et al. 2007, Whittemore & Dixon 2008, Yu et al. 2008, Handley et al. 2010, Maher & De Vries 2011, Udlis 2011, Disler et al. 2012, Schulman-Green et al. 2012, Cooney et al. 2013). As stated before, Self-management is considered the next attribute in the process (see Fig. 3) because, apart from learning to endure the illness and initiating different strategies, it also implies having some knowledge about the illness itself, adhering to a plan and actively participating in the decision-making that an illness involves (Whittemore & Dixon 2008, Yu et al. 2008). In particular, in this concept analysis, Self-management is conceived as an attribute, which also implies a ‘dynamic active process of learning, practising and exploring the skills necessary to create a healthy and emotionally satisfying life’ (Whittemore & Dixon 2008, p. 178). In other words, it is deemed an attribute through which people suffering from chronic illness take responsibility over their own health in a proactive manner, to know what to do and how to manage the illness (Whittemore et al. 2002, Whittemore & Dixon 2008). This perception of Self-management is the result of seminal works carried out mainly by Corbin & Strauss in the 1980s (Corbin & Strauss 1985, 1987). With reference to this, Self-management is presented as an intermediary attribute
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between Coping and Integration as explained in the following section (see Fig. 3). Integration. The attribute of Integration has been identified in 14 of the 36 studies reviewed for this concept analysis (Whittemore & Roy 2002, Whittemore et al. 2002, Emery 2003, Fraser et al. 2006, Kralik et al. 2006, Kralik & Van Loon 2007, 2009, Olsson et al. 2008, Stanton et al. 2007, Whittemore & Dixon 2008, Handley et al. 2010, Kneck et al. 2012, Portillo et al. 2012, Schulman-Green et al. 2012). Integration is considered to be the next attribute of Living with chronic illness because apart from having some knowledge, adhering to a plan, and actively participating in informed decision-making, also implies making changes in life to search for ‘a new normal’ (see Fig. 3). This attribute was reported to take place by ‘reconciling emotions, establishing a structure, striving for satisfaction, exploring self and conflicts, discovering balance and developing a new cadence to life’ (Whittemore & Dixon 2008, p. 179). Furthermore, Integration is presented as a complex and multidimensional attribute, mainly determined by generating a process of change in the person’s lifestyle to finally adjust to the illness (Whittemore & Dixon 2008, Schulman-Green et al. 2012). In a qualitative study, Schulman-Green et al. (2012) argue that through the attribute of Integration, several skills and strategies are developed to successfully introduce the illness into the person’s life. Some of these strategies could be the reorganisation of daily life by creating a routine with respect to illness and according to it, or seeking new social activities. Additionally, and based on the characteristics of Integration as an attribute, the present study claims that this attribute is necessary for Adjustment to happen, which is the following and last attribute of Living with chronic illness, as is explained in the following section. Adjustment. Adjustment has been identified in 19 of the 36 reviewed studies, and in the literature is perceived as the last attribute of the concept (Kralik 2002, Whittemore & Roy 2002, Delmar et al. 2005, Kralik et al. 2005, 2006, Fraser et al. 2006, Sharpe & Curran 2006, Telford et al. 2006, Kralik & Van Loon 2007, 2009, Simmons et al. 2007, Stanton et al. 2007, Wann-Hansson et al. 2008, Whittemore & Dixon 2008, Yu et al. 2008, Maher & De Vries 2011, Kneck et al. 2012, Portillo et al. 2012, Schulman-Green et al. 2012). Adjustment is a more encompassing attribute than Integration because, along with searching for a ‘new normal’ in life and generating a modification in lifestyle, it also entails © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2357–2367
Review
a progressive process of transformation of the person’s selfidentity as the illness also forms part of it. In this way, Whittemore and Dixon (2008) presented that Integration is a prior characteristic to finally adjust to chronic illness. Therefore, Schulman-Green et al. (2012) in a systematic review argue that this attribute refers to the functions and skills that contribute to coming to terms with a life change and an evolvement of the identity of the person as a result of the illness. Adjustment implies adapting to both the illness and the evolvement of the person’s identity, with the final desired target being to achieve ‘Positive living’ with the chronic illness (Schulman-Green et al. 2012, Ambrosio et al. 2014). According to the literature, these five attributes of this concept are dynamic with advances and setbacks, and of a dependent and progressive nature, and this clearly highlights that Living with chronic illness needs to be understood as a process whose final target is to achieve ‘Positive living’ with chronic illness. ‘Positive living’ in this concept analysis is comprised as the final desired goal of Living with chronic illness in adults when they achieve the necessary attributes to live a normal life according to his/her new situation and/or context (Ambrosio et al. 2014). The attributes are considered dependent because they cannot exist in isolation. For example, the first attribute to achieve ‘Positive living’ with chronic illness is Acceptance which is in most cases followed by the attribute of Coping. Despite this, having a given order does not necessarily imply that Living with chronic illness is a rigid process. Each individual experiences his/her reality and the process of Living with chronic illness in a particular way (Portillo et al. 2012, Ambrosio et al. 2014) and for this reason, individualising knowledge according to each individual’s experience becomes essential. Step 3.2. Antecedents and consequences Following Rodgers evolutionary method (Rodgers 2000), the antecedents and consequences of a concept were identified by reviewing the literature and highlighting key information of the papers that alluded to events that happened before and after the process. Five antecedents of the concept of Living with chronic illness in adults have been identified: (1) being aware of the situation of change created by a chronic disease, antecedent referring to how the experience of the process is previously perceived and understood (Meleis et al. 2000, Cooney et al. 2013); (2) personal networks which encompass support systems created to establish a process of decision-making according to the person’s health and well-being (Simmons et al. 2007, Schulman-Green et al. 2012, Cooney et al. © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2357–2367
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2013); (3) information and education about the chronic illness (Olsson et al. 2008, Handley et al. 2010, Udlis 2011); (4) personal conditions, antecedent referring to the person’s meanings, beliefs and attitudes, socioeconomic state and preparation and expertise (Meleis et al. 2000, Portillo et al. 2012); and (5) attitude to life despite the illness (Stanton et al. 2007, Disler et al. 2012). Furthermore, five main consequences of the concept of Living with chronic illness (considering that Living with chronic illness as a process could be successful or not) have been identified: (1) degree of control (Delmar et al. 2006, Wann-Hansson et al. 2008, Kneck et al. 2012); (2) degree of mastery (Kralik et al. 2006, Handley et al. 2010, Cooney et al. 2013); (3) degree of normality (Fraser et al. 2006, Maher & De Vries 2011); (4) degree of balance (Kralik et al. 2004, Whittemore & Dixon 2008, Disler et al. 2012); and (5) impact on quality of life and well-being (Olsson et al. 2008, Kralik & Van Loon 2009, Udlis 2011).
Discussion In the present concept analysis, Living with chronic illness in adults is conceived as a complex, dynamic, cyclical and multidimensional process with the final desired target being to achieve ‘Positive living’ (see Fig. 3). It is considered complex because it generates changes in all aspects of the person’s life; dynamic because it moves along time; cyclical because it fluctuates by means of advances and setbacks throughout the experience and multidimensional because it includes different attributes (Kralik 2005, Kralik & Van Loon 2009). In particular, these findings illustrate that Living with chronic illness is a process, which incorporates five attributes: Acceptance, Coping, Self-management, Integration and Adjustment. None of the 36 studies analysed identifies the five attributes, which somehow shows the lack of consensus existing in the literature on the reviewed concept. Based on the literature, a pattern of significant progression has been identified. This could be used as a framework of reference to compare with each person’s individual experience and in this way, to illustrate relevant action. To be precise, depending on how patients develop these attributes, different outcomes of the process will be achieved and a classification of different ways of Living with chronic illness could be drawn. As it has been explained in the methodological section, based on these findings, previous research of the authors (Portillo et al. 2012, Ambrosio et al. 2014) and an in-depth team discussion, analytical/ theory driven themes were created and proposed as a typology of different ways of Living with chronic illness.
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Although there is limited literature to support this emerging typology, it is a first conceptual leap in stimulating and developing more thinking on Living with chronic illness.
A proposed typology of Ways of Living with Chronic Illness (step 4 of the concept analysis) After the analysis of the data emerged in Step 3 (Rodgers 2000), an emerging typology to introduce and analyse different ways of Living with chronic illness is proposed (see Fig. 3). In this typology, ‘ways of living’ refer to possible outcomes of the process as a result of how the five attributes occur and develop. In particular, four existing ways of living as the result of the process are proposed and explained below and are summarised in Table 3: (1) Disavowal, (2) False Normality, (3) The New Normal and (4) Disruption. Way 1 of Living with chronic illness: Disavowal Disavowal is a way of living in which the person experiences a lack of control and balance in his/her life. Regarding this, other authors (Emery 2003, Kralik et al. 2006, Telford et al. 2006) have previously identified the stage of extraordinariness, which seems similar to this way of living in terms of experiencing a situation of stress and frustration in which the illness is not part of his/her life because no attribute has been achieved (see Fig. 3). The person could experience this way of living at the beginning of the process after the diagnosis of the disease and also at any other stage of the illness if the attributes have not been developed adequately (i.e. Acceptance).
Way 2 of Living with chronic illness: False Normality False Normality is a way of living in which the person experiences a partial control and balance in his/her life (see Fig. 3). This way of living has been previously identified as ‘strained co-existence’ by Cooney et al. (2013) in a grounded theory study with 26 patients with chronic obstructive pulmonary disease. It is interesting to note that achieving False Normality could be the result of developing some of the attributes presented in this concept analysis such as Self-management but not all of them. Consequently, in this case, the patient could have gained experiential knowledge through the years, and seemed to maintain certain control over activities of daily living, such as symptoms and medication, and thus could have a normalised life. In contrast, when reaching False Normality, a lack of acknowledgement and Acceptance of the disease is also evident (the attribute of Acceptance has not been developed beforehand). Therefore, the process of Living with chronic illness to achieve ‘Positive living’ has not been fully completed and the gaps of the process lead to False Normality. This way of living could be long-lasting but its apparent balance is not sustainable in time. More precisely, it will be vulnerable to some distressing factors, which could lead to Disruption (see way of living 4) and cause a loss of balance. Way 3 of Living with chronic illness: The New Normal In The New Normal, the person lives a normal life because he/she has achieved the attribute of Acceptance and has developed the necessary additional attributes to reach the final goal ‘Positive living’ with chronic illness, according to their situation and/or context (see Fig. 3). Other authors
Table 3 Summary of the proposed typology Ways of Living with chronic illness Disavowal
False Normality
The New Normal
Disruption
Main characteristics
No Acceptance Lack of control and balance Long-lasting
No Acceptance Partial control and balance Long-lasting Vulnerable to Disruption
Acceptance developed Total control and balance Long-lasting Less vulnerable to Disruption
Similarities with the literature
Lack of Acceptance When?: At any stage of the process What involves?: Stress and frustration
Lack of Acceptance When?: At any stage of the process What involves?: Experiential knowledge
Differences with the literature
Outcome vs. stage Different name: Extraordinariness
Outcome vs. stage Different name: Strained co-existence
Meaning given to life Normalisation When?: At the end of the process What involves?: Adjustment achieved Outcome vs. stage Different name: Ordinariness
Acceptance needed again Control and balance Breakdown Temporary (caused by distressing factors) Gap in the literature
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problem-focused strategies. Both types of strategies are deemed necessary to promote the attribute of Coping as it was previously stated by (Lazarus & Folkman 1984). The former makes reference to mechanisms for the control of emotional responses, which a person experiences when facing a chronic illness. The latter makes reference to the mechanisms which favour, or make possible, a change in the situation. From a qualitative research perspective, some authors such as Kralik et al. (2004) use the concepts of Coping and Self-management interchangeably. Nevertheless, in the present concept analysis, such an approach is considered inadequate. As shown above, Coping entails learning to tackle the consequences of an illness and initiating strategies when dealing with the adversity that this involves. Self-management, in turn, is considered a more advanced attribute (see below). Therefore, Coping is presented as an intermediate attribute, placed between Acceptance and Self-management as explained in the following section (see Fig. 3). Self-management. Twenty out of the 36 reviewed studies identified Self-management as a defining attribute of Living with chronic illness (Whittemore & Roy 2002, Whittemore et al. 2002, Lorig & Holman 2003, Koch et al. 2004, Kralik et al. 2004, 2005, 2006, Delmar et al. 2006, Fraser et al. 2006, Lundman & Jansson 2007, Olsson et al. 2008, Simmons et al. 2007, Whittemore & Dixon 2008, Yu et al. 2008, Handley et al. 2010, Maher & De Vries 2011, Udlis 2011, Disler et al. 2012, Schulman-Green et al. 2012, Cooney et al. 2013). As stated before, Self-management is considered the next attribute in the process (see Fig. 3) because, apart from learning to endure the illness and initiating different strategies, it also implies having some knowledge about the illness itself, adhering to a plan and actively participating in the decision-making that an illness involves (Whittemore & Dixon 2008, Yu et al. 2008). In particular, in this concept analysis, Self-management is conceived as an attribute, which also implies a ‘dynamic active process of learning, practising and exploring the skills necessary to create a healthy and emotionally satisfying life’ (Whittemore & Dixon 2008, p. 178). In other words, it is deemed an attribute through which people suffering from chronic illness take responsibility over their own health in a proactive manner, to know what to do and how to manage the illness (Whittemore et al. 2002, Whittemore & Dixon 2008). This perception of Self-management is the result of seminal works carried out mainly by Corbin & Strauss in the 1980s (Corbin & Strauss 1985, 1987). With reference to this, Self-management is presented as an intermediary attribute
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between Coping and Integration as explained in the following section (see Fig. 3). Integration. The attribute of Integration has been identified in 14 of the 36 studies reviewed for this concept analysis (Whittemore & Roy 2002, Whittemore et al. 2002, Emery 2003, Fraser et al. 2006, Kralik et al. 2006, Kralik & Van Loon 2007, 2009, Olsson et al. 2008, Stanton et al. 2007, Whittemore & Dixon 2008, Handley et al. 2010, Kneck et al. 2012, Portillo et al. 2012, Schulman-Green et al. 2012). Integration is considered to be the next attribute of Living with chronic illness because apart from having some knowledge, adhering to a plan, and actively participating in informed decision-making, also implies making changes in life to search for ‘a new normal’ (see Fig. 3). This attribute was reported to take place by ‘reconciling emotions, establishing a structure, striving for satisfaction, exploring self and conflicts, discovering balance and developing a new cadence to life’ (Whittemore & Dixon 2008, p. 179). Furthermore, Integration is presented as a complex and multidimensional attribute, mainly determined by generating a process of change in the person’s lifestyle to finally adjust to the illness (Whittemore & Dixon 2008, Schulman-Green et al. 2012). In a qualitative study, Schulman-Green et al. (2012) argue that through the attribute of Integration, several skills and strategies are developed to successfully introduce the illness into the person’s life. Some of these strategies could be the reorganisation of daily life by creating a routine with respect to illness and according to it, or seeking new social activities. Additionally, and based on the characteristics of Integration as an attribute, the present study claims that this attribute is necessary for Adjustment to happen, which is the following and last attribute of Living with chronic illness, as is explained in the following section. Adjustment. Adjustment has been identified in 19 of the 36 reviewed studies, and in the literature is perceived as the last attribute of the concept (Kralik 2002, Whittemore & Roy 2002, Delmar et al. 2005, Kralik et al. 2005, 2006, Fraser et al. 2006, Sharpe & Curran 2006, Telford et al. 2006, Kralik & Van Loon 2007, 2009, Simmons et al. 2007, Stanton et al. 2007, Wann-Hansson et al. 2008, Whittemore & Dixon 2008, Yu et al. 2008, Maher & De Vries 2011, Kneck et al. 2012, Portillo et al. 2012, Schulman-Green et al. 2012). Adjustment is a more encompassing attribute than Integration because, along with searching for a ‘new normal’ in life and generating a modification in lifestyle, it also entails © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2357–2367
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Disclosure
Funding
The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/eth ical_1author.html), as follows: (1) substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; (2) drafting the article or revising it critically for important intellectual content and (3) final approval of the version to be published.
No specific grant from any funding agency in the public, commercial or not-for-profit sectors has been received at this stage.
Conflict of interest No conflict of interest has been declared by the authors.
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