Becoming whole again—Caring for the self in chronic illness—A narrative review of qualitative empirical studies

Abstract

Aim and Objectives

To explore how chronic illness transforms the self when living with and managing chronic illness and what this means for their self and identity. We also discuss how people with chronic conditions could be supported by healthcare professionals to manage illness in daily life.

Background

Self‐management recommendations from health care are commonly based on a biomedical understanding of the disease. People's experiences of how a condition affects them and adequate support are crucial for their outcomes in daily self‐management.

Design

A narrative review.

Methods

A systematic search was undertaken during January 2021 across the databases MEDLINE, CINAHL, PsycINFO, Soc INDEX and Philosopher's Index. A quality appraisal of articles was performed. Our analysis was inspired by qualitative content analysis. The PRISMA Checklist 2020/EQUATOR guidelines was used to report the study.

Results

Twenty‐eight peer‐reviewed qualitative empirical articles focusing on self in a variety of chronic illnesses with relevance to nursing published from January 2010 to December 2020 were included. The main theme, Developing from an uncertain existence to meaning and wholeness, was built up by the five themes: Walking on an unstable ground; Being stalemated; Being involved with others for better or worse; Searching for meaning; and lastly, Modifying self and integrating a new way of living.

Conclusions

The results illuminate experiences that seldom are prioritized but need to be addressed by health professionals. Such experiences are oriented more towards the existential self rather than medical issues, why it is important to go beyond the medical lens.

Relevance to Clinical Practice

This is important knowledge for nurses aiming to support people with chronic illnesses. Nurses supporting people in self‐management need to be aware that by teaching and encouraging people to revise their daily habits, they also work on the boundaries of their self‐concept.

Patient or Public Contribution

No patient or public contribution.

What does this paper contribute to the wider global clinical community?

• In long‐term conditions, people pass through a process of adaptation in which their self becomes affected and transformed.

• When supporting people in self‐management health care professionals need to expand their perspective beyond the biomedical understanding of a disease, be aware of this inner process, and pay attention to it.

• Our results reveal that even if there are differences between diseases, their progress, and treatment intensity, there are also similarities, particularly regarding how the self becomes whole again.

1. INTRODUCTION

Drawing heavily from Charmaz's conceptual framework, rooted in symbolic interactionism, this review underscores the significance of everyday actions and experiences in understanding the meaning of living with chronic illness (Charmaz, 1983). Our narrative review synthesizes findings from 28 empirical scientific articles to explore the transformative impact of chronic illness on the self and the processes through which individuals navigate towards wholeness. Chronic illness is characterized by long‐lasting conditions that often could be controlled but with no definitive cure (Charmaz, 1995).

The groups of people with chronic illness and long‐term conditions that are highlighted in this literature review are those with obesity, type 2 diabetes, cardiovascular diseases, respiratory diseases, hepatic diseases, cancer, neurological diseases, chronic pain, rheumatological and musculoskeletal diseases. Challenges describes in literature in people with chronic illness are, for example, loss of autonomous life, loneliness, emotional imbalance and unmet need for support (Van Wilder et al., 2021). Furthermore, being dependent, deprivation of spontaneity and feeling uncertain about the future are reported (Rasalingam et al., 2023). People with a chronic disease are reported to have to find new strategies to cope with the negative outcome in their new life. Support from one's own networks and healthcare professionals is stated to be helpful in a new life situation (Benkel et al., 2020) where the self is threatened.

Charmaz's work elucidates how chronic illness can detrimentally harm the self, both as a process and an object, leading to identity shifts and a disconnection between body and self (Charmaz, 1983, 1995, 1999, 2002). Central to her perspective is the notion of adaptation ‘altering life and self to accommodate to bodily losses and limits and resolving the lost unity between body and self’ (Charmaz, 1995, p 657). It is underscoring the necessity of reconciling with illness rather than combating it. Our review centers on empirical studies that illuminate the transformative journey of the self amidst chronic illness.

2. THE REVIEW

2.1. Self and chronic illness

Chronic illness is described as disrupting the unity between body and self, triggering identity transitions and potential self‐loss. Beyond physical manifestations, individuals grapple with emotional and existential challenges such as anxiety, social isolation and disrupted self‐concepts—often overlooked in conventional healthcare approaches (Bury, 1982; Charmaz, 1991, 1995).

Charmaz's informed by sociological perspectives, defines self, self‐concept and identity as essential analytic tools to explore how individuals evolve and adapt over time (Charmaz, 2002). The self encompasses qualities, values and sentiments that we attribute to ourselves, shaped by changing thoughts and feelings and therefore describes identities as preferred, that people assume, desire, hope or plan for, for the future (Charmaz, 1999).

2.2. Self‐care and self‐management

Self‐care could be defined as a preventive strategy used by people at home and is action‐oriented. Riegel et al. (2012) considered self‐care to be an overarching concept, covering self‐maintenance, self‐care monitoring and self‐management. Self‐management, according to Barlow et al. (2002), which we adhere to in this paper, encapsulates an individual's ability to navigate symptoms, treatments, and lifestyle adjustments associated with chronic conditions and is a dynamic, ongoing process crucial for maintaining quality of life. Chronic illness necessitates self‐management efforts to sustain physical function and promote well‐being, but is varying in ease and effectiveness among individuals (Eton et al., 2012; Stridsman et al., 2015). Self‐management is, however, also suggested to be a precursor of patient empowerment and improved patient outcomes. Furthermore, both intrinsic and extrinsic factors influence self‐management outcomes (Lawless et al., 2021).

Healthcare professionals frequently advice people about the need for changed routines to support self‐management. In this effort, to encourage people to revise their daily habits, one must remember that we are also working on the boundaries of people's self‐concepts (Charmaz, 2002). While self‐management in chronic illness is a cornerstone of clinical practice, its emphasis on disease management and habit changes regarding, for example, diet, physical activity, smoke cessation etcetera, frequently neglects the preservation of self‐identity—a critical aspect that shapes individuals' capacity for adaptation. Prevailing biomedical paradigms and priority setting decisions also frequently overlook the profound impact of illness on individuals' self‐perceptions and experiences. Patient experience is important to contextalize clinical evidence since it informs us about patients' needs, how to meet them, and the burden of illness, as well as the effect of treatment (Rand et al., 2019). From a nursing perspective, Ould Brahim (2019) emphasizes that interdependence relations, such as between carers and patients, are central to all human development and could ease self‐management. She states that a relational approach to autonomy highlights the systemic conditions that also must be considered when evaluating self‐management efforts.

Regarding effects of self‐management, Charmaz states that our sense of self is vital for overall well‐being, influencing how we perceive our bodies, interact with others and make decisions, including managing chronic illness. Individuals with chronic conditions often face challenges in taking responsibility for their self‐management. Chronic illness can also disrupt established habits and challenge self‐concepts (Bury, 1982; Charmaz, 1991) but trying to take control over illness and body in order to live as normally as possible is beneficial and therefore suggested (Charmaz, 1995).

2.3. Loss and reconstruction of self

Diagnosis of a chronic condition can create a sense of loss, leading to anxiety, low self‐esteem and difficulty in managing the illness (Charmaz, 1995). People with chronic illness may struggle with bodily changes and a disrupted sense of self, risking social identity based solely on impairment. The need for deconstructed social roles has been described as more prominent in some diseases and age groups. In a study of young people with Parkinson's disease the biographical disruption was a repetitive process that started again every time new stages of the disease were entered or when new symptoms appeared and daily routines became challenged (Valasaki, 2022).

Overcoming loss of self also involves transcending stigmatizing labels and thereby perceive oneself as more than the body or the illness (Charmaz, 1995). Introspection has been described as a resource to reach beyond such self‐boundaries, which may lead to a sense of well‐being and wholeness (Coward & Reed, 1996). People also employ various coping strategies like avoidance, denial, reframing and humour to manage illness and regain a sense of wholeness (Charmaz, 1991, 1995; Roger et al., 2014).

Adaptation to illness entails reconstructing identity after change, forming preferred identity goals crucial for motivation and self‐management (Charmaz, 1995, 1999, 2002). Healthcare professionals focusing mostly on physical symptoms may counterforce adaptation or aggravate disruption of self (Bury, 1988; Charmaz, 1991; Goffman, 1963). A broader perspective considering social context and meaning is crucial for supporting individuals with chronic conditions (Charmaz, 1995; Zola, 1991). Empirical studies on self‐transformation due to chronic illness are lacking but essential for informing healthcare practices.

Concludingly, this narrative review underscores the imperative of understanding the transformative journey of the self amidst chronic illness, shedding light on the nuanced experiences and adaptive processes people undergo. By elucidating these dynamics, healthcare professionals can better support individuals in managing their conditions while preserving their sense of self and identity.

2.4. Aim

Based on eligible empirical studies, this systematic narrative review aims to describe how the self is transformed by chronic illness, by addressing what people experience when being diagnosed, managing and living with chronic illness and what this means for the self and identity.

3. METHODS

3.1. Design

A narrative review was performed, which means condensing the text, answering our aim and summarizing the content of each article included in the review (Green et al., 2006). Unlike traditional systematic reviews, a narrative review enables the interpretation of data into a cleaner and more readable format. It presents a broad perspective on a topic and is also used as educational material to bring practitioners up to date within specific areas. Narrative reviews are often discussing theory and context and may serve to provoke thoughts and controversies. Such reviews are, therefore, beneficial when presenting philosophical perspectives in a balanced manner (Green et al., 2006). To be rigorous though the review, it must have a clearly defined approach to identify and synthesize previous research (Popenoe et al., 2021). Narrative reviews deal more with broader issues than focused clinical problems and are thereby seen as a weaker form of evidence to use for making clinical decisions. However, they constitute an important component in the literature base of various phenomena (Green et al., 2006). In our narrative literature review we have followed the procedure outlined in the article of Green et al. (2006). The process included search methods, determined inclusion and exclusion criteria, search outcomes and independent qualitative appraisal as well as review and data extraction that are described below. The analysis of the results in the included articles is described under data abstraction and synthesis. The process is reported according to the checklist PRISMA 2020 statement: an updated guideline for reporting systematic review (Appendix S1), (Page et al., 2021).

3.2. Search methods

A search strategy was initially developed where words and concepts were formulated as search terms. Searches were made in EBSCO by SH and ÅH together in January 2021 across the databases MEDLINE, CINAHL, PsycInfo, AMED, SocINDEX and Philosopher's Index, for the period 2010–2020.

3.3. Inclusion and/or exclusion criteria

Inclusion criteria: The search focused on empirical literature with a qualitative methodology where the concept of self and sense of self in chronic illness were seen as important key terms. The key terms concerned the person, the condition, experiences in everyday life, the personal meaning and the self or identity. Their combinations in the search procedure are found in Appendix 1. Limits applied to the searches were as follows: including only articles that were available in English, peer‐reviewed and in full text, and concerning adults (>19 years), as well as with the key terms found in abstracts. Exclusion criteria: Due to our focus on physical chronic illness, some diseases or conditions were excluded as acute illness, intensive care, psychiatric conditions, dementia or cognitive impairment, drug abuse and addiction, disabilities and impairments, sexual orientation, acne and burns trauma, wounds, infections, transplantation and Covid19. The searches in the databases and one manually identified article resulted in a total of 118 articles. After the removal of duplicates, 105 articles remained.

3.4. Search outcomes and quality appraisal

Once the searches in various databases were carried out, we started to select the studies. The selection of relevant studies was done by SH and ÅH independently and started with reading the 105 abstracts, of whom 71 were excluded due to the criteria described above, and then, in a second stage, the remaining 34 articles were read in full text. Both researchers were initially blinded to each other's selection, and any divergences were discussed until a consensus was reached, whereby four articles not relevant to the aim of the study or not fitting into the inclusion criteria were excluded. In total, 30 articles fitting into the aim and inclusion and exclusion criteria were identified. These articles were assessed regarding quality using the 10‐question Joanna Briggs Institute 2017 Critical Appraisal Checklist for qualitative studies (Lockwood et al., 2015). The quality appraisal, made by a primary and secondary reviewer, was based on the inclusion criterion that at least seven of 10 questions were answered with a Yes. After comparison and discussions in the whole research group, two articles were excluded after quality appraisal.

A flow chart of the selection process is shown in Figure 1. The final 28 articles that were included in the analysis are in Appendix 2, described regarding authors, year of publication, country, conditions, participants, purpose, methods and a short summary of findings interpreted into themes.

FIGURE 1.

Flow chart over inclusion process. [Colour figure can be viewed at wileyonlinelibrary.com]

3.5. Data abstraction and synthesis

All the authors reviewed the articles independently, and a template decided upon in advance was used. The template highlighted (a) what people experience when being diagnosed, (b) what people experience when managing and living with a chronic illness and (c) what this means for self and identity. In the analysis, we focused on how self in relation to chronic illness was described in the articles' result sections, and interpreted in the discussions, thereby identifying concepts and processes related to self and contextual data important for analysis. The analysis of the final 28 articles started with the reading of the whole article. Each of the four authors was assigned 6–7 articles to be analysed upon its content and asked to identify, extract and write down a summary of how chronic illness was experienced and had impacted the sense of self, including personal meanings and social consequences. These summaries, that is, the data, were then listed in a table to tease out the similarities and differences in the various studies.

The data were then critically discussed by the whole research group. Inspired by qualitative content analysis according to Graneheim and Lundman (2004), data were interpreted and sorted into tentative themes. The research group has extended experience of the method and found it suitable to describe variations in data and to sort data into themes on various hierarchical abstraction levels (Lindgren et al., 2020). In accordance with the method, connections between these themes were further analysed and the these were then organized hierarchically. This analytic procedure was not linear, but rather a going back and forth between identified text building the themes, the tentative themes and the text in the original articles (Lindgren et al., 2020). All steps in the analysis implied thorough discussions within the whole group searching for a consensus regarding interpretation and trustworthiness in analysis, which finally generated one main theme, five themes and 16 subthemes.

4. RESULTS

The narrative review includes 28 qualitative studies from France (n = 1), Italy (n = 3), United Kingdom (n = 7), Denmark (n = 2), Norway (n = 4), New Zeeland (n = 2), Chile (n = 1), Ireland (n = 1), United States of America (n = 3), Sweden (n = 1), Iran (n = 1) and China (n = 2). The studies covered various chronic illnesses and conditions, such as cardiovascular disease, lung disease, diabetes, obesity, multiple long‐term conditions, cancer, hepatic disease, neurological disease, chronic pain, and musculoskeletal and inflammatory joint disease. Men and women (n = 696), 21–95 years old participated.

The analysis of the articles in this review, with the aim to describe how the self is transformed by chronic illness, resulted in one main theme ‘Developing from an infirm and uncertain existence and to wholeness,’ built up by five themes with two to five subthemes each. These are presented in Table 1 and in the running text below, where the subthemes within themes are marked in italics.

TABLE 1.

Overview of themes on various levels.

Main theme: Developing from an uncertain existence to meaning and wholeness
Subthemes	Themes
Feeling threatened Living in uncertainty	Walking on an unstable ground
Experiencing inertia Feeling disregarded Feeling blamed	Being stalemated
Sharing experiences Distancing from disease Finding comfort	Being involved with others for better or worse
Explaining the why's Turning to spirituality or nature for hope Caring for others	Searching for meaning
Caring for oneself Finding inner strength Forwarding with no return Adapting to limitations Becoming reunified again	Modifying self and integrating a new way of living

4.1. Developing from an uncertain existence to meaning and wholeness

The main theme, formulated as a process, was identified through the abstraction of included themes and subthemes. Experiences of chronic illness were interpreted as a transformation, which started at the period of diagnosis with experiences of being on unstable ground, where existence suddenly became threatened, and people became stalemated. Being involved with others and searching for meaning gave strength and hope, which led them forward to adapt to limitations and modification of self and integrate a new way of living, finding wholeness.

4.1.1. Walking on an unstable ground

This theme concerns people's struggles when being diagnosed. This was seen as an overwhelming and life‐changing experience. People were feeling threatened when they became aware of the seriousness of the disease and felt anxious. It was also reported an intensified need for privacy simultaneous with a need for vigilance since they were confronting their own mortality (Barello & Graffigna, 2015; Crowe et al., 2010; Drageset et al., 2020; Handley et al., 2010; Hill et al., 2015; Hunt et al., 2014; Keim‐Malpass & Steeves, 2012; Lockhart et al., 2014; Madsen et al., 2015; Nanton et al., 2016; Richardson et al., 2014; Subasic, 2013; Tang & Lee, 2017). The theme also concerned experiences of uncertainty. Living with uncertainty, the unpredictability of the disease, and an unreliable body as well as waiting times for medical examinations meant being in limbo with an unknown future (Crowe et al., 2010; Hill et al., 2015; Hunt et al., 2014; Keim‐Malpass & Steeves, 2012; Madsen et al., 2015; Nanton et al., 2016; Subasic, 2013; Tang & Lee, 2017).

4.1.2. Being stalemated

This theme also highlights that people were experiencing inertia which implied an inability to act and plan forward. A reduced agency was reported, not having the strength to engage in self‐management in everyday life. Experiencing heaviness, existential worries, and that life was put on hold or not worth living, were expressed. Anxiety and depression as well as being blocked, seeing no solutions nor being able to change anything, simultaneously being afraid to fail, and having low self‐esteem were reported (Bailly et al., 2015; Barello & Graffigna, 2015; Bove et al., 2017; Drageset et al., 2020; Faccio et al., 2016; Hamnes et al., 2011; Herrera et al., 2017; Hill et al., 2015; Keim‐Malpass & Steeves, 2012; Lockhart et al., 2014; Sekse et al., 2012; Subasic, 2013; Tang & Lee, 2017). Furthermore, feeling disregarded, not being taken seriously, or being seen as a hypochondriac was expressed. The negative side of being involved with others was that it could imply feeling blamed. Constantly being reminded, being looked at, being hurt and not accepted by others meant that they felt stigmatized and alone. They experienced being disregarded and doubted even by doctors leading to social and bodily shame (Bailly et al., 2015; Christiansen et al., 2012; Faccio et al., 2016; Hill et al., 2015; Tang & Lee, 2017). It implied that people felt that the illness was their own fault and fatigue thereby often trivialized by health care professionals and where their needs of support or confirmation were unmet. They, therefore, felt isolated, neglected and dropped from the healthcare system (Bailly et al., 2015; Madsen et al., 2015; Matthews & Semper, 2017; Montali et al., 2011; Tang & Lee, 2017).

4.1.3. Being involved with others for better or worse

This theme highlights the positive and negative aspects of sharing. One way of sharing experiences was described as meeting and interacting with others with the same disease, and getting peer support, something that contributed to feelings of not being alone. Also, participating in research interviews was seen as an opportunity for sharing with others. This created an opportunity to compare themselves with others who were in worse conditions. Such comparisons were seen to cope and get relief. People could thereby sometimes minimize and deny their status as chronically ill and were also distancing from the disease (Barkham & Ersser, 2017; Ghezeljeh & Emami, 2014; Herrera et al., 2017; Lockhart et al., 2014; Stenberg & Furness, 2017; Zhang et al., 2014). Sharing could imply increased learning which was one way to get involved. It concerned their search for information and finding the latest research. Getting self‐care advice and information exchange, such as storytelling‐listening, highlighted the value of knowledge (Barkham & Ersser, 2017; Ghezeljeh & Emami, 2014; Hamnes et al., 2011; Handley et al., 2010; Hill et al., 2015; Lockhart et al., 2014; Lönnberg et al., 2020). Finding comfort through involvement with others, and caring practical support and assistance as well as emotional support were promoting and connectedness. Support from family and friends, colleagues as well and nurses was highlighted as important. Comforting and rewarding oneself, such as eating, preferably with others, relieves stress (Bailly et al., 2015; Christiansen et al., 2012; Ghezeljeh & Emami, 2014; Herrera et al., 2017; Hill et al., 2015; Kang & Ellis‐Hill, 2015; Lockhart et al., 2014; Lönnberg et al., 2020; Stenberg & Furness, 2017).

4.1.4. Searching for meaning

An important part of the transformation in chronic illness was searching for meaning. Explaining the whys, that is, the signs and symptoms, as well as why people had got the disease at a specific moment, was important. Even if it initially and sometimes also later in the disease progression was difficult to understand the symptoms many strived to distinguish symptoms from their different diseases, conditions and reactions to stress. They also searched for causality, that is, what had triggered or led to their disease (Bailly et al., 2015; Crowe et al., 2010; Ghezeljeh & Emami, 2014). To get meaningful answers, some people were turning to spirituality or nature for hope and could also let nature take its course. This was seen as mediating hope and could also give them energy to cope with their illness. Furthermore, caring for others gave meaning, and by holding on to family traditions and beliefs, people could experience compassion and benevolence (Ghezeljeh & Emami, 2014; Zhang et al., 2014).

4.1.5. Modifying self and integrating a new way of living

The last theme concerned people's experiences of transformation as a process to move on where they modified the self and integrated a new way of living. It concerned insights into the need of caring for oneself, meaning getting motivated, prioritizing and taking responsibility for oneself, but sometimes also for family's sake. People eventually felt that it was up to them to decide about, for example, an altered lifestyle and taking care of their self and self‐care (Barkham & Ersser, 2017; Ghezeljeh & Emami, 2014; Hamnes et al., 2011; Handley et al., 2010; Herrera et al., 2017; Kang & Ellis‐Hill, 2015; Lönnberg et al., 2020; Stenberg & Furness, 2017; Zhang et al., 2014). Finding inner strength meant striving for a proactive self‐balance, gaining trust in oneself, raising self‐confidence, feeling power and taking control. Furthermore, it concerned developing independence (or accepting dependence), integrity, dignity and self‐worth, which sometimes implied self‐re‐evaluation leading to renewed strength (Christiansen et al., 2012; Herrera et al., 2017; Hill et al., 2015; Kang & Ellis‐Hill, 2015; Lönnberg et al., 2020; Richardson et al., 2014; Zhang et al., 2014). Forwarding with no return was a transformational experience. For example, a personal tragedy could be transformed through the phases of ‘encountering darkness, converting darkness, encountering light and reflecting light’. Forwarding with no return also meant that people got an insight that they would never be the same as before. Furthermore, it led to insights that the body and its shape and functions could entail personal uncertainties. It could also force people to develop a new identity, that is, a cancer survivor living and thriving and having psychosocial benefits from it (Faccio et al., 2016; Keim‐Malpass & Steeves, 2012; Matthews & Semper, 2017; Sekse et al., 2012). Adapting to limitations was described as physical adjustment to illness, physical restrictions and decreasing resources. It also meant adjusting expectations, accepting symptoms, living for the moment and slowing down. Adapting could also mean searching for an alternative role, also less challenging job roles, and accepting not getting jobs after interviews. It could imply that people had to hide their weaknesses (Bailly et al., 2015; Christiansen et al., 2012; Ghezeljeh & Emami, 2014; Madsen et al., 2015; Stenberg & Furness, 2017; Tang & Lee, 2017). Lastly, becoming reunified again, meant experiencing a new normal, adjusting to a new way of living‐new way of being‐establishing a new identity. It often implied successful living with an illness, such as living with technology, the ability to return to an acceptable state of health or readjusted health. However, it could also mean a decision to resign treatment if it was experienced as too heavy. A paradox regarding the reunification was that the dualism of mind–body also could be experienced as beneficial for the transformation of self, that is, if the body was experienced as a too‐heavy burden, it could be transcended (Christiansen et al., 2012; Crowe et al., 2010; Hill et al., 2015; Hunt et al., 2014; Kang & Ellis‐Hill, 2015; Subasic, 2013).

5. DISCUSSION

Our main theme, ‘Developing from an uncertain existence to wholeness,’ is in line with previous literature describing that people becoming chronically ill need to make sense of new experiences that may separate them from a body taken for granted and a life they used to know. This stresses the importance of self‐management support tailored to help individuals adapt to their new realities while prioritizing self‐care. However, it is important to acknowledge the limitations inherent in our perspective, as qualitative studies may not fully capture the diverse experiences of all individuals with chronic illnesses. Nevertheless, these studies provide valuable insights into the common journey towards self‐transformation amidst illness.

Recovery from chronic illness involves developing strategies to regain a sense of control and come to terms with one's condition. Insights from research by Eik et al. (2022), Bury (1982) and Kleinman (1988) underscore the necessity for healthcare professionals to understand how chronic illness impacts individuals' sense of self and to be familiar with theories of selfhood to provide meaningful support.

Healthcare professionals play a crucial role in facilitating patients' journeys through illness by actively listening to their narratives. Eik et al. (2022) highlight the importance of patients' stories in facilitating recovery. However, challenges exist in healthcare settings, where time constraints may hinder patients from sharing their experiences with professionals. This lack of personal support can contribute to feelings of blame and anxiety, hindering effective illness management and leading to negative health outcomes (Greaney & Flaherty, 2020).

Lived experience is a dimension of the lifeworld that could be expressed in words and thereby understood. Narrating is a way to remember, bring together and express moments that we can experience as a unified story that tells about the meaning of being in the world (Lindseth & Norberg, 2022). Reluctance to share stories with healthcare professionals is though often attributed to time constraints within healthcare settings (Greaney & Flaherty, 2020). In the current society, with limited resources in healthcare, effective self‐management is suggested as a solution to the increasing disease burden and costs. However, people often struggle with self‐management since the support is mostly focused on disease management and support of self‐modification is put behind since it takes time and resources (Dubouloz et al., 2010).

The first theme walking on an unstable ground related to uncertainty and awareness of seriousness, and it often implied strong feelings of threat and anxiety. Such feelings are commonly experienced when people are newly diagnosed. Being reminded about mortality and living in uncertainty may worry people, but simultaneously, they often also initially focus on disease management, trying to live a healthier life to get control (Paterson, 2001). From healthcare professionals' and biomedical perspectives, this could be seen as beneficial, but not to forget people also need emotional support to reduce struggles during this period, since the diagnosis often implies both personal and social negative consequences (Hajdarevic et al., 2016, 2022; Johansson et al., 2018; Turner & Kelly, 2000).

The theme being stalemated related to blame, disregard and a following inertia which is negative for self. Experiencing burden is common in chronic illness and may interfere with disease management, such as insulin treatment in diabetes, reducing strength to engage in self‐care activities. Healthcare professionals are reported not to be sensitive enough to patients' reduced strength when setting goals for self‐care activities but also to give very little or inadequate support. An overreliance on individual autonomy and responsibility without adequate support may lead to feelings of blame and ‘care left undone’ (Greaney & Flaherty, 2020). Lilleheie et al. (2021) also describe that people with chronic illness may experience this like a tension between carrying a burden and feeling like a burden in health care. Furthermore, in literature, the burden is often linked to treatment, financial and psychosocial aspects as well as personal burden. Feelings of guilt, hopelessness and fear are also common when being diagnosed with chronic illness (Bunzli et al., 2013; Sav et al., 2015). This may lead to depression and isolation and add further social burden on a self that is already disrupted (Iovino et al., 2023). Patients with chronic illness, instead of feeling blamed and stalemated by healthcare, wish to be seen as resourceful persons and may also need support (Hajdarevic et al., 2022; Hultstrand Ahlin et al., 2019).

The theme being involved with others for better or worse, is related to finding comfort, sharing experiences and not being alone, but also learning more as well as distancing from disease by minimizing or denying chronic illness or rewarding oneself. Sharing experiences with others seems to facilitate the normalization of self. Meeting people from patient organizations implies meeting those with similar experiences. Through shared experiences and understanding, people are reported to become more open and honest. Such experiences could lead to a sense of community, comfort, being healed and support of self. Being involved with others, friends and family as workmates may imply feelings of being included and not being alone. However, it may also remind people of their vulnerability as well as being a burden and force them to avoid exposure to the illness (Bunzli et al., 2013; Hajdarevic et al., 2022). When losing our sense of self, we are likely to seek self‐worth from others, simultaneously as we find it more difficult to connect to others. We may seek reassurance from others that we are okay but may doubt it since our emotional well‐being depends on how we feel about ourselves (Charmaz, 1995).

The theme searching for meaning related to caring for others, searching answers on questions about causality, and hope. Spiritual well‐being is a culture‐specific and complex phenomenon. In literature, loss of meaning has been described as the opposite of sense‐making (Todres et al., 2009). Not having the opportunity to make sense of a chronic illness experience has even been interpreted as dehumanization in health care (Todres et al., 2009). There are reports indicating that spirituality and hope are important aspects of power that could help people understand themselves and their lives in view of their ultimate meaning and value (Bekelman et al., 2007). Self‐awareness is also a basis for spiritual well‐being which has been shown in people with rheumatoid arthritis and cancer (Lin et al., 2011). Thus, according to a meta‐synthesis by Lin et al. (2011), spirituality should be evaluated as an important component of patients' quality of life. Additionally, they state that caring for others, such as playing a role as a parent or family member, is important for accomplishment and meaningfulness in patients' lives. Keeping the hope of recovery and a belief in medical discoveries to provide more important remedies or a cure improves positive thinking and reinforces the self (Lin et al., 2011). Attending to a sick role in chronic illness, even if it also is related to stigma and being a burden as described by Goffman (1963), may also serve as a way of experiencing meaning by getting more attention and support if there are few possibilities to adapt to illness and modify self.

The last theme, modifying self and integrating a new way of living, is related to the process of moving on, taking care of oneself and prioritizing life. Finding inner strength, including a proactive self‐balance, and forwarding with no return, was described as a transformational experience that forced people to develop new identities or adapt to limitations. Becoming reunified, often implied a new identity and readjusted health goals. If the body was experienced as a too heavy burden, it could be transcended. Acknowledging that one is more than the body and its symptoms could be powerful and people could get insights that life can have purpose and meaning beyond the limitations of the body as well. People who are transcending their illness appreciate the many aspects of living that do not involve the body, such as relations, love and intellectual activities such as reading, crosswords, etc. Living in the present and seizing the moment has been described as a self‐preserving strategy (Hajdarevic et al., 2014). The past could then be apprehended as compressed, the present expanded and the future shortened by the chronic illness, but still experienced as meaningful and constituting a connected self.

For some people though recognizing the inevitable consequences of disease such as death or deterioration of symptoms could be difficult and it is thereby not easy to move forward without being consumed by the illness (Vann‐Ward et al., 2017). Hope and optimism could help people to cope with chronic severe illness. Insights that life is not infinite imply humility for life and humbleness towards others and happiness over living and waking up every day, feeling healthy, and that next of kin also is healthy (Hajdarevic et al., 2014). However, it needs a reevaluation and change of self, an acceptance of the limitations of the body, and a change of the frame of one's mind, that is, believing in that ‘you are what you think you are’. If solved, it could lead to people's bodies and minds becoming reunified again (Vann‐Ward et al., 2017).

5.1. Limitations

A limitation of the sample literature is that the review included articles published between 1 January 2010 and 31 December 2020. The explanation for not including articles after 2020 is that the data analysis took a long time. However, we find the result valid and we do not believe that an additional search would change the result much. Further, it is possible that the transformational process described in the results is related to existential struggles that are not dramatically changing over time, between people and across illnesses in society. Our search followed strict planning regarding databases, keywords, languages and dates. Thus, a rigorous process was undertaken to identify articles, but of course, some research may have been missed.

A strength of the review is that the study selection and data extraction were made independently and later compared by pairs of researchers. Quality appraisals, including risk of bias, were made. The review process was guided by questions that highlighted similar results irrespectively of the researcher that performed it. Only qualitative studies were included in the review, which may strengthen our results, highlighting a patient perspective. A limitation though may relate to the diversity in populations, cultural backgrounds/countries and illnesses. However, it could also be seen as a strength since it helped us to reveal the similarities we report. No studies were found from Africa and only two from Asia. A few studies came from America, but the vast majority of the studies came from Europe (n = 20). Reaching out to other populations in research may require other cultural understandings and overcoming language barriers. A strength is that we have included a broad and diverse sample of chronic illnesses. Our existential experiences of our self and how it transforms when being diagnosed with a chronic illness may not differ a lot, maybe some parts are universal.

6. CONCLUSION

What about the self in relation to self‐management? Greaney and Flaherty (2020) highlight that despite ongoing rhetoric about self‐management, including benefits such as autonomy and empowerment among patients, most people are not able to perform the myriad of self‐management tasks and higher‐order self‐management skills required at various points in their illness trajectory. We argue that self‐management support of people with chronic conditions must be a continuous process like the nature of a chronic condition, otherwise, it is unethical to uphold. Transformation in chronic illness is, therefore, suggested to be a process of modifying self and learning about disease management in an iterative and continually changing manner (Dubouloz et al., 2010). Self‐management support must also focus on both the self and the disease management and thereby acknowledge individual experiences of living with illness. This is the critical component of person‐centered care and effective medical care with an ethical agenda. Within this ethical agenda it is also important to take into consideration the wide range of biopsychosocial influences that could be apported with a touch of blame, for example, new diets and ideas about physical training and expectations on adherence, that may have a positive or negative impact on a person's self‐management ability and sense of self (Greaney & Flaherty, 2020; Udlis, 2011).

7. RELEVANCE TO CLINICAL PRACTICE

Our result could help healthcare professionals understand the importance of how self in people with chronic illness could be strengthened in self‐management. Healthcare professionals must be aware of the recovery process and support people personally through it. Listening to narrations about illness experiences and thereby trying to understand is necessary to be able to support people in their struggles to develop and regain a sense of control, come to terms with their illness, and become reunified again. It is, however, important to remember that this process that is described as leading to a transformed self may not fit perfectly with every individual, every illness, state or stage of disease. If people continue in their struggles to come to terms with their illness, they could at least be thoroughly listened to by healthcare professionals. Our listening to people's narrations about their illness experiences and struggles is reported to be healing (Lindseth & Norberg, 2022). Regarding implications for future research, we suggest investigating the impact of self‐strengthening interventions directed at people with various chronic conditions. The outcomes of such interventions could be evaluated by qualitative as well as quantitative methods.

FUNDING INFORMATION

The study was funded by the Dept of Nursing at Umeå University, Sweden.

CONFLICT OF INTEREST STATEMENT

No conflicts to report.

Supporting information

Appendix S1.

APPENDIX 1. Key terms and combinations in the search procedure

1.1.

Search no	Key term	Combination of searches	Combination of searches	Combination of searches
Experiences
S1	Experiences or Perceptions or Attitudes or Views or Feelings OR Everyday life or Daily living or Ordinary life or Living with AND Qualitative research or Qualitative study or Qualitative methods or Interviews	S1 AND S2 AND S4 = S6	S5 AND S6 = S7	S3 AND S7 = S8
Conditions
S2	Chronic or Long term or Long‐term or Persistent AND Illness or Disease or Sickness or Condition
Subject
S4	Patients or People or Persons or Clients
Personal meaning
S5	Significance or Importance or Impact or Implication or Consequences or Meaning
Self or identity
S3	Identity or Self or Sense of self or Self‐image or Self‐esteem or Body image or Confidence or Self perception

APPENDIX 2. Studies included in the narrative review

2.1.

No	Authors, (year of publication), country	Conditions	Participants, No (men, women), age	Purpose	Qualitative method	Summary interpreted into themes
1	Bailly et al. (2015), France	Chronic low back pain	25 (m = 11, w = 14), 25–80 years	To better understand experiences of patients living with chronic low back pain, with a focus on impact on relationships with family, friends and work colleagues.	Thematic, qualitative content analysis	Being stalemated. Being afraid to fail. Low self‐esteem. Feeling blamed. Unmet needs of support and feeling isolated and dropped from the system. Being disregarded. Involving with others for better and worse. Finding comfort, searching for connectedness, rewarding oneself. Searching for meaning. Explaining the whys, and causality. Modifying self and integrating a new way of living. Adapting to limitations. Physical adjustments, hiding weakness, search for an alternative role.
2	Barello and Graffigna (2015), Italy	Heart failure, COPD, Stroke, diabetes, and cancer	99 (m = 67 w = 32), mean age 63 years	To explore the patient engagement experience and its relationship with patients' quality of life in the context of the Italian health care system and in relation to different chronic diseases.	Qualitative data analysis	Walking in an unstable ground. Threatened Being stalemated. Experiencing inertia, being blocked, seeing no solutions, nor being able to change anything, low self‐esteem.
3	Barkham and Ersser (2017), UK	Multiple long‐term conditions	29 (m = 11, w = 18), 64–95 years mean 72	To examine the feasibility and impact of a group intervention by community matrons to support those living with multiple long‐term conditions.	Grounded Theory	Involving with others for better and worse. Distancing from disease Getting selfcare advice and information exchange. Modifying self and integrating a new way of living. Taking care of oneself. Taking responsibility.
4	Bove et al. (2017), Denmark	Chronic obstructive pulmonary disease	20 (m = 14, w = 6), 54–88 years, mean age 69	To explore the patients' experience of a minimal home‐based psycho‐educative intervention aimed at reducing symptoms of anxiety.	Interpretive description	Being stalemated. Experiencing inertia, being blocked, seeing no solutions, not being able to change anything, low self‐esteem.
5	Christiansen et al. (2012), Norway	Obesity	11 (m = 4, w = 7), 25–56 years	To gain more knowledge about characteristics of eating habits and body image as well as motivational forces for change.	Herme‐neutic analysis	Being stalemated. Feeling blamed, disregarded by doctors and social and bodily shame. Involving with others for better or worse. Finding comfort, rewarding oneself. Modifying self and integrating a new way of living. Finding inner strength, proactive self‐balance, developing independence, integrity, dignity and self‐worth. Adapting to limitations, hiding weaknesses and searching for an alternative role. Becoming reunified again, the body a too heavy burden, that could be transcended.
6	Crowee et al. (2010), New Zeeland	Chronic lower backpain	64 (m = 33, w = 31), 25–80 years, mean age 55	To investigate peoples' experience of the impact of chronic low backpain.	Thematic analysis	Walking in an unstable ground. Threatened. Being uncertain. Searching for meaning. Causality, becoming reunified again, transcendence.
7	Drageset et al. (2020), Norway	Breast cancer	71 (w = 71), 51–75 years, mean age 62	To describe survivors' coping experiences nine years after breast cancer surgery.	Qualitative meaning condensa‐tion analysis	Walking in an unstable ground. Threatened. Being stalemated. Experiences of inertia, anxiety, depression and worries.
8	Hamnes et al. (2011), Norway	Rheuma‐toid arthritis, fibromyalgia	16 (m = 3, w = 13), 40–65 years	To determine participant expectations with respect to a one‐week inpatient self‐management programme for those with fibromyalgia and rheumatoid arthritis.	Thematic analysis	Involving with others for better or worse. Distancing from disease, finding comfort, support from family and friends, sharing with others, managing guilt and shame. Modifying self and integrating a new way of living. Taking care of oneself.
9	Herrera et al. (2017), Chile	Hypertension	51, (Gender and age not known)	To understand patient non‐adherence using dialogical self‐theory and qualitative research methods.	Qualitative content analysis	Being stalemated. Experiences of inertia and anxiety. Involving with others for better or worse. Distancing from disease, finding comfort, support from family and friends. Modifying self and integrating a new way of living. Taking care of oneself. Up to them to decide. Finding inner strength, integrity and dignity, self‐reevaluation.
10	Hill et al. (2015), UK	Hepatitis C	23 (m = 11, w = 12), mean age 48 years	To explore the experience of adults living with hepatitis C over time.	Descriptive phenomenological analysis	Walking on an unstable ground. Feeling threatened, being uncertain, unpredictability. Being stalemated. Inertia, low self‐esteem, feeling blamed, bodily shame, disregarded. Involving with others for better or worse. Distancing from disease, getting selfcare advice, highlighting the value of knowledge. Finding comfort, assistance and support, connectedness. Modifying self and integrating a new way of living. Finding inner strength, rising self‐confidence, taking control, integrity and independence. Becoming reunified again, transformation and transcendence.
11	Hunt et al. (2014), Ireland	Multiple sclerosis	5 (m = 2, w = 3), 40–65 years	To explore the meanings of leisure‐based visual art‐making for people living with multiple sclerosis.	Interpreta‐tive pheno‐menological analysis	Walking in an unstable ground. Feeling threatened, being uncertain, unpredictability. Modifying self and integrating a new way of living. Becoming reunified again, transformation and transcendence.
12	Kang and Ellis‐Hill (2015), UK	Parkinson's disease	8 (m = 3, w = 5), 57–78 years	To explore how people live life successfully with Parkinson's disease and what contributed to the level of success.	Thematic analysis	Involving with others for better or worse. Finding comfort, assistance and support, connectedness. Modifying self and integrating a new way of living. Taking care of oneself, prioritizing. Finding inner strength, rising self‐confidence, self‐reevaluation. Becoming reunified again, transformation and transcendence.
13	Keim‐Malpass and Steeves (2012), USA	Cancer	16 (w = 16), 29–39 years	To gain a unique perspective of the experiences of young women with cancer (age 20–39 at diagnosis) through analysis of their online illness‐blogs.	Ethno‐graphic qualitative analysis	Walking in an unstable ground. Feeling threatened, being uncertain, unpredictability. Being stalemated. Inertia, low self‐esteem. Modifying self and integrating a new way of living. Forwarding with no return, new identity and benefits from disease.
14	Lockhart et al. (2014), USA	Heart failure or pulmonary hypertension	28 (m = 8, w = 12), mean age 72 years	To explore the experiences of patients with heart failure in a self‐management support program to inform the development of future interventions that support and motivate patients to engage in self‐management.	Qualitative analysis	Walking on an unstable ground. Feeling threatened. Being stalemated. Inertia, low self‐esteem. Involving with others for better or worse. Distancing from disease, getting involved with others, finding comfort, rewarding oneself. Self‐advice, value of knowledge. Relieved stress.
15	Lönnberg et al. (2020), Sweden	Hyperten‐sion or type 2‐diabetes	16 (m = 8, w = 8), 51–75 years	To explore the experiences of participants at high risk of cardiovascular disease of lifestyle change after participation in a one‐year structured lifestyle counselling programme, and to link the techniques and strategies used by the participants to the processes of the transtheoretical model of behaviour change.	Qualitative content analysis	Involving with others for better or worse. Distancing from disease, getting involved with others, finding comfort, rewarding oneself. Modifying self and integrating a new way of living. Taking care of oneself. Up to them to decide about an altered lifestyle. Finding inner strength, self‐reevaluation leading to resilience.
16	Madsen et al. (2015), Denmark	Anchylo‐sing spondylitis or chronic rheumatic disease	12 (m = 12), 32–58 years, mean age 44	To develop an understanding of how men experience anchylosing spondylitis and the challenges related to living with AS as a chronic disease.	Qualitative content analysis	Walking on an unstable ground. Feeling threatened, being uncertain, unpredictability. Being stalemated. Feeling blamed, isolated, neglected and dropped from the system, trivialized. Modifying self and integrating a new way of living. Adapting to limitations, hiding weaknesses and searching for alternative roles.
17	Matthews and Semper (2017), UK	Breast cancer	7 (w = 7), 38–80 years	To explore breast cancer patients' experiences during survivorship.	Interpre‐tative phenomenological analysis	Being stalemated. Feeling blamed, isolated, neglected and dropped from the system. Modifying self and integrating a new way of living. Forwarding with no return. Developing new identities. Having psychological benefits from disease
18	Montali et al. (2011), Italy	Primary biliary cirrhosis	23 (w = 23), 39–77 years, mean age 59	To investigate the illness experience of women who are affected by primary biliary cirrhosis.	Interpreta‐tive pheno‐menological analysis	Being stalemated. Feeling blamed, isolated, neglected and dropped from the system. Their own fault.
19	Ghezeljeh and Emami (2014), Iran	Coronary heart disease	24 (m = 12, w = 12), mean age 53	To identify coping strategies used by Iranian patients with coronary heart disease.	Qualitative content analysis	Involving with others for better or worse. Distancing from disease, sharing with others, finding comfort and rewarding oneself. Searching for meaning. Explaining the why's, causality? Caring for others gives meaning. Holding to family traditions. Altruism. Modifying self and integrating a new way of living. Taking care of oneself, up to them to decide. Adapting to limitations.
20	Nanton et al. (2016), UK	Advanced cancer, chronic conditions and multimorbidity	16 (m = 11, w = 5), 41–92 years	To examine the impact of uncertainty on patients' representations of self and to elucidate the part played by their health care professionals and the systems.	Ethno‐graphic conceptual analysis	Walking in an unstable ground. Threatened. Being uncertain.
21	Richardson et al. (2014), UK	Osteoarthritis	21 (gender not known), 55–90 years	To explore “wellness and resilience” in a group of older people who reported chronic joint pain and considered themselves healthy.	Thematic analysis	Walking in an unstable ground. Feeling threatened, being uncertain, unpredictability. Modifying self and integrating a new way of living. Finding inner strength, self‐reevaluation leading to resilience.
22	Sekse et al. (2012), Norway	Gynaecological cancer	16 (w = 16), 39–66 years, mean age 56	To highlight how women experienced living through gynaecological cancer.	Stepwise meaning condensa‐tion analysis	Being stalemated. Experiences of inertia, anxiety and depression, low self‐esteem. Modifying self and integrating a new way of living. Forwarding with no return. Psychological benefits.
23	Stenberg and Furness (2017), UK	Long term conditions	8 (w = 8), 21–80 years, mean age 63.5	To explore the outcomes associated with the Health Trainers service from the perspective of people accessing the service and identify which features of the HT service were valued and why.	Grounded Theory	Involving with others for better or worse. Distancing themselves from the disease. Finding comfort and rewarding oneself. Modifying self and integrating a new way of living. Up to them to decide about an altered lifestyle. Adapting to limitations, hiding weakness.
24	Subasic (2013), USA	Hypertrophic cardiomyopathy	15 (m = 7, w = 8), 31–66 years	To provide an insiders' account of what it is like to live with hypertrophic cardiomyopathy, a genetic cardiovascular illness that carries the risk for sudden cardiac death.	Qualitative interpreta‐tive analysis	Walking in an unstable ground. Threatened. Being uncertain, unknown future, in a limbo. Being stalemated. Inertia, low self‐esteem. Modifying self and integrating a new way of living. Becoming reunified again, readjustment.
25	Tang and Lee (2017), China	Chronic obstructive pulmonary disease	22 (m = 18, w = 4), 61–89 years	To explore the lived experience of hospital readmissions of Chinese older people with Chronic obstructive pulmonary disease.	Phenomenological analysis	Walking in an unstable ground. Threatened. Being uncertain, unknown future, in a limbo. Being stalemated. Experiences of inertia, anxiety and depression, low self‐esteem, feeling blamed, disregarded and doubted. Isolated and neglected, dropped from the system. Modifying self and integrating a new way of living. Adapting to limitations.
26	Zhang et al. (2014), China	Chronic illness: hypertension, diabetes, arthritis, COPD, bladder cancer, asthma, gallstones, coronary heart disease and CVD	11 (m = 5, w = 6), 64–92 years	To investigate the meaning of life and health experience of Chinese older people with chronic illness.	Thematic analysis	Involving with others for better or worse. Distancing from disease, sharing with others, finding comfort and rewarding oneself. Searching for meaning. Caring for others, family traditions and beliefs. Modifying oneself and integrating a new way of living. Taking care of oneself. Finding inner strength, self‐confidence and self‐worth.
27	Faccio et al. (2016), Italy	Obesity and bariatric surgery	30 (w = 30), mean age 35	To investigate obese patients' beliefs and expectations before and 1 year after bariatric surgery.	Discourse analysis	Being stalemated. Seeing no solutions, being afraid to fail, low self‐esteem. Being disregarded and doubted, social and bodily shame. Modifying oneself and integrating a new way of living. Forwarding with no return, transformational experience, forcing people to develop a new identity and having social benefits from it.
28	Handley et al. (2010), New Zeeland	Type 2 diabetes	9 (m = 4, w = 5), 30–60 years	To better understand the day‐to‐day lived experiences of adults with type 2 diabetes, in particular, their historical and current ability to self‐manage this condition.	Phenomenology and grounded theory. Iterative thematic content data collection.	Walking in an unstable ground. Threatened, loss of control, traumatic experience and unknown future. Involving with others for better or worse. Finding comfort, feeling different and rewarding oneself. Needs for information, disease and non‐disease specific. Modifying oneself and integrating a new way of living. Adapting on a daily basis, striving for a sense of control in life and ownership of the condition.

Hajdarevic, S. , Norberg, A. , Lundman, B. , & Hörnsten, Å. (2025). Becoming whole again—Caring for the self in chronic illness—A narrative review of qualitative empirical studies. Journal of Clinical Nursing, 34, 754–771. 10.1111/jocn.17332

DATA AVAILABILITY STATEMENT

The data that supports the findings of this study are available in the supplementary material of this article.