Article Text

Original research
Do chronic heart failure symptoms interact with burden of treatment? Qualitative literature systematic review
  1. Rosalynn C Austin1,2,3,
  2. Lisette Schoonhoven2,3,4,
  3. Mike Clancy2,5,
  4. Alison Richardson2,3,5,
  5. Paul R Kalra1,6,7,
  6. Carl R May8,9
  1. 1Department of Cardiology, Portsmouth Hospitals University NHS Trust, Portsmouth, Hampshire, UK
  2. 2School of Health Sciences, Faculty of Environmental and Life Sciences, University of Southampton, Southampton, Hampshire, UK
  3. 3National Institite for Health Research (NIHR) Applied Research Collaboration (ARC) Wessex, Southampton, UK
  4. 4Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands
  5. 5University Hospital Southampton NHS Foundation Trust, Southampton General Hospital, Southampton, UK
  6. 6Faculty of Health and Science, University of Portsmouth, Portsmouth, Hampshire, UK
  7. 7Institute of Health and Wellbeing, College of Medical, Veterinary and Life Sciences, University of Glasgow, Glasgow, Scotland
  8. 8Faculty of Public Health and Policy, London School of Hygiene and Tropical Medicine, London, UK
  9. 9National Institute for Health Research (NIHR), Applied Research Collaboration (ARC) North Thames, London, UK
  1. Correspondence to Rosalynn C Austin; r.c.austin{at}soton.ac.uk

Abstract

Objective Explore the interaction between patient experienced symptoms and burden of treatment (BoT) theory in chronic heart failure (CHF). BoT explains how dynamic patient workload (self-care) and their capacity (elements influencing capability), impacts on patients’ experience of illness.

Design Review of qualitative research studies.

Data sources CINAHL, EMBASE, MEDLINE, PsycINFO, Scopus and Web of Science were searched between January 2007 and 2020.

Eligibility Criteria Journal articles in English, reporting qualitative studies on lived experience of CHF.

Results 35 articles identified related to the lived experience of 720 patients with CHF. Symptoms with physical and emotional characteristics were identified with breathlessness, weakness, despair and anxiety most prevalent. Identifying symptoms’ interaction with BoT framework identified three themes: (1) Symptoms appear to infrequently drive patients to engage in self-care (9.2% of codes), (2) symptoms appear to impede (70.5% of codes) and (3) symptoms form barriers to self-care engagement (20.3% of codes). Symptoms increase illness workload, making completing tasks more difficult; simultaneously, symptoms alter a patient’s capacity, through a reduction in their individual capabilities and willingness to access external resources (ie, hospitals) often with devasting impact on patients’ lives.

Conclusions Symptoms appear to be integral in the patient experience of CHF and BoT, predominately acting to impede patients’ efforts to engage in self-care. Symptoms alter illness workload, increasing complexity and hardship. Patients’ capacity is reduced by symptoms, in what they can do and their willingness to ask for help. Symptoms can lower their perceived self-value and roles within society. Symptoms appear to erode a patient’s agency, decreasing self-value and generalised physical deconditioning leading to affective paralysis towards self-care regimens. Together describing a state of overwhelming BoT which is thought to be a contributor to poor engagement in self-care and may provide new insights into the perceived poor adherence to self-care in the CHF population.

PROSPERO registration number CRD42017077487.

  • heart failure
  • cardiomyopathy
  • adult cardiology
  • qualitative research
  • quality in health care

Data availability statement

Data are available on reasonable request. Data presented in this work was taken from previously published articles.

http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Strengths and limitations of this study

  • This is the first systematic literature review to explore the role of symptoms in burden of treatment in chronic heart failure (CHF).

  • This is a review of previously published qualitative studies; observations are restricted by the choice of published quotes from the included articles, and our conclusions were formed by using data to develop explanatory ideas different from those of the original researchers.

  • Difference in articles, like various healthcare settings, and broad patient characteristics strengthens the confidence that our observations are common in the CHF patient population.

  • The innovative methods to visually illustrate the qualitative data, allows the reader to observe the depth and breadth of the themes outlined in the results.

  • Examining existing qualitative literature with a different theoretical framework may form the foundation for an adaptation to burden of treatment theory with practical application to CHF service delivery.

Introduction

Chronic heart failure (CHF) is increasing in prevalence, it is now estimated there are just under 1 million patients living with CHF in the UK.1 Despite major advances in its treatment, many people with CHF experience substantial symptom burden and life-limiting prognosis.2–4 The focus of CHF management is increasingly centred on self-care.5 This includes behavioural changes (limiting fluid intake, diet restrictions, physical activity); self-monitoring of physiological processes (weight gain, fluid retention, breathlessness, fatigue); management of multiple medications; and appropriate help-seeking in response to symptoms. These self-care activities form the core of patient workload or treatment burden. It has been suggested that poor adherence to self-care regimens contributes to delays in seeking help, hospital admissions, increasing treatments and costs, and poor patient outcomes.6 It should be noted, however, that experiences of illness and adherence to self-care regimens may be influenced by CHF symptoms or comorbidities, such as cognitive impairment,7 anaemia8 and fatigue.9

Understanding interactions between symptoms and treatment burden in CHF is an important question, which has yet to be explored. It has been proposed that as symptom burden increases, there is a reduction in the affective, cognitive, relational, informational, material and physical capacity of people with long-term conditions. This reduction in capacity is reflected in increases in experienced burden of treatment (BoT), the dynamic modifiable workload delegated to patients.10–12 BoT theory12 explains how patient workload (assigned illness tasks) and their capacity (elements influencing capability), impacts on the experience of illness; where overwhelming BoT leads to patient disengagement with self-care.10 12–16 BoT theory was chosen as it provides a patient focused framework to explore CHF patient experience, focusing on patients’ individual capacity, illness workload and their effects. We have previously argued17 that interactions between symptoms and treatment burden are important in CHF and in this qualitative literature review we identify, characterise and explain these interactions as they are reported in the literature, and explore their implications for understanding patient experience and self-care outcomes.

Aim of review

To undertake a systematic review of qualitative literature on the lived experiences of CHF to identify, characterise and explain interactions between symptoms and BoT using mixed-method content analysis using BoT theory as a framework for analysis.

Research question

Do symptoms in CHF interact with BoT?

Methods

Identification of studies

Using a refined search strategy (adapted from May et al,15 we searched CINAHL, EMBASE, MEDLINE, PsycINFO, Scopus and Web of Science. Search strategies are provided (online supplemental material S1). Bibliographies of included articles and relevant review articles were hand searched. Worldwide English language primary qualitative research articles were examined for descriptions of living with, and managing, CHF from the patient perspective. Mixed-method studies were considered for inclusion but required a substantial focus on qualitative methods to be included. Patient experience of heart transplant, end-of-life care, and CHF treatment effects were excluded. Searches were limited to articles published between January 2007 and 20 January 2020 (table 1).

Table 1

Eligibility criteria for included articles

Study selection

RA screened titles and abstracts, using Covidence,18 against eligibility criteria. MC, who was blinded to RA’s decisions, reviewed a random selection of 357 articles. Disagreements were resolved by CRM and LS. Full-text articles were retrieved, and a final decision regarding eligibility made. The comprehensiveness of the search was confirmed through hand searching articles bibliography.

Article quality assessment

RA, CRM and LS assessed articles using Critical Appraisal Skills Programme.19 Papers were scored on the presence of additional participant and CHF characteristics. Articles were grouped into high or medium quality categories. NVivo20 analysis demonstrated no theme was preferentially represented in either high or medium quality articles; therefore, all articles were considered equally.

Data extraction and analysis

Data from the findings/results sections, including published supplemental data, were extracted from each paper. Using the extracted data a mixed-method content analysis was performed which combines quantitative and qualitative content analysis methods.21

Quantitative content analysis

Descriptive characteristics of the articles and participants were extracted and where possible summarised using descriptive statistics. NVivo assigns the term node to a grouping of codes defined by the researcher. A code is a segment of text from included articles. NVivo creates automatic counts of how often a node was coded (frequency) and how many articles the node was present in (consistency). Custom NVivo queries were built to count when symptom nodes occurred within the a priori BoT framework which was developed by RA, CRM and LS (online supplemental material S2). Counts of symptom nodes were used to rank the symptoms according to the frequency and consistency of coding in included articles. Sankey diagrams were built using an open-source coding programme, SankeyMATIC.22 A Sankey diagram is a flow diagram, where the width of the arrows represents the depth of that interaction or flow rate.

Qualitative analysis

A refinement of Thomas and Harden23 methodology for thematic synthesis was used. Stage 1, identification: Extracted data were examined by RA for text referring to symptoms of CHF, forming symptom nodes. A patient and public involvement (PPI) group reviewed the symptom nodes, reorganising and refining the nodes, while simultaneously checking for errors and bias. This process was repeated by a Heart Failure Specialist Nurse (MG). Stage 2, characterisation: Codes in each symptom node were read in context and a descriptive theme created capturing the context associated with that symptom. The constant comparison method24 facilitated an in-depth exploration of the nature of any observed interactions. Stage 3, explain: Descriptive themes were systematically examined, compared with the BoT a priori framework coding. Simultaneously, how each symptom acted on the framework was also coded.

Role of public and patient involvement

PPI included the refinement of the research question, symptom nodes, and confirmed coding structure. PPI members reported that results presented in this paper related to their experiences.

Results

Results: quantitative content analysis

Searches were first run on 4 November 2017 and repeated on 1 January 2020. This returned 7349 results, duplicates were removed leaving 4497 articles to be examined for eligibility, resulting in 35 articles to be included (figure 1). A full list of included articles is provided (online supplemental material S3). Table 2 presents a summative description of included articles.

Table 2

(A, B): characteristics of included articles

Figure 1

PRISMA flow chart for CHF articles on patient experience. CHF, chronic heart failure; PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analyses.

These articles present the CHF patient experience from healthcare systems in 14 countries, primarily through interview techniques and represent the experience of 720 participants (57.6% male). Symptoms were grouped by physical and emotional characteristics (figure 2). In this article we will refer to these groupings as physical and emotional symptoms. Breathlessness, weakness, and disturbed sleep were the three most prevalent physical symptoms; while despair, anxiety, and fear the most prevalent emotional symptoms.

Figure 2

Symptom terms found in included articles: name of symptom node in bold font with example quote in speech bubble. Counts of frequency consistency of coding are provided. HF, heart failure.

Figure 3 illustrates how coded symptoms interacted with coded elements of BoT framework. The width of the connectors represents how frequently these codes interacted, acting as a visual representation of the prevalence of each type of interaction observed in the data. CHF symptoms appeared to drive (9.2% of codes, n=238), impede (70.5% of codes, n=1823) or form a barrier to patients’ engagement with elements of BoT (20.3% of codes, n=525). Suggesting that symptoms rarely encourage patients to engage with self-care. Predominantly, symptoms make self-care more difficult and can stop patients from engaging with self-care.

Figure 3

Sankey diagram of symptoms and the type of interaction they have with burden of treatment. Thickness of the flow bars represents the frequency of that interaction being coded in the analysis.

Results: qualitative content analysis

Here interaction is defined as how a CHF symptom impacted on the patient, influencing their self-care engagement and concurrently altering BoT. Constant comparative analysis25 revealed positive (drive) and negative (impede and barrier) interactions between symptoms and BoT. Each of these interactions are considered in turn in the following section. Drive was defined as an interaction where the presence of a symptom meant the patient then positively engaged with an element of their BoT (eg, attend hospital, take medications, etc…). Where Impede was defined as the symptoms making this engagement more difficult and Barrier was defined as symptoms stopping patient engagement in this work.

Symptoms drive patients to engage with self-care

Symptoms are generally accepted to be the impetus which causes an individual to seek healthcare advice, take medications, and make lifestyle changes. Symptoms appeared to drive patients to positively engage with: (1) workload in asking for help, and (2) workload in performing tasks of CHF self-care. Symptoms also encouraged patients to use their capacity to access external resources. Table 3 provides exemplar quotes and figure 3 illustrates the interactions.

Table 3

Symptoms drive patients to engage with self-care

Symptoms can encourage patients to engage in the tasks of CHF self-care; from seeking urgent help from healthcare services to adapting activities of daily living to limiting symptom exacerbation.26–50 Symptoms urged patients to access healthcare systems for treatment adjustments or hospital admissions,27 28 30 33 35 36 38 43 46–49 51 receive support from social networks,26 27 29–32 34 35 37 39–43 45 47 49 52 engage with self-care tasks26–29 32 36 40 45–47 49 50 and make physical environments alterations.26 29 31 49 Symptoms compelled patients to recruit help from their social networks. Family and friends assumed tasks without being asked, that were beyond patient capacity. They also provided emotional support to patients. Without help from friends and family patients felt managing their illness was more difficult.

Symptoms Impede patient engagement with self-care

Symptoms of CHF are acknowledged as burdensome, this type of interaction was coded impede, meaning symptoms made self-care more difficult. Symptoms appear to impede patients’ ability to engage with their self-care. Symptoms appeared to hinder patients in the following areas: (1) workload in performing the tasks of CHF self-care, (2) workload in gaining knowledge of CHF, (3) capacity to utilise physical, emotional, mental and spiritual abilities, (4) capacity to access external resources and (5) impact of changes to patient self and role. Table 4 provides exemplar quotes and figure 3 illustrates the interactions.

Table 4

Symptoms as impede patients in engaging with self-care

Symptoms made monitoring and management of CHF harder.28–31 35–38 40 41 44 46 48 50 51 53 54 Completing specific tasks such as taking medications, attending appointments and other self-care activities become more difficult in the presence of symptoms.27 28 30 34–40 44 46 48–51 53 Further multiple comorbidities (common in CHF) can create confusion around which illness was responsible for what symptom and which treatment takes priority.28 33 35 37 40 41 46 47 53

Symptoms made daily activities like housework, leisure activities, sexual intimacy and personal hygiene more difficult restricting patients’ holistic participation in life.26 28 29 31 32 34–43 46 49–51 53 55 56 Within this context of impaired capability, engagement with lifestyle changes was limited.31 36 39 40 43 46 51 53 When CHF patients were unsuccessful in completing work assigned by healthcare practitioners: stress, guilt, and anxiety were exacerbated.28 37 40 44 48 50 Some reported purposely choosing not to make lifestyle behaviour changes as the effort of these changes outweighed perceived benefits.46 50

Symptoms can restrict patients’ ability to acquire knowledge around CHF. The sometimes progressive and vague nature of CHF symptoms together with the presence of comorbidities created confusion hindering baseline understanding of CHF.26 29 30 35–37 46–50 54 Treatments for CHF can have iatrogenic effects leading to confusion between disease progression or treatment side effects deterring the evaluation of treatment outcomes.28 30 35–38 40 50 Increased self-monitoring of symptoms intensified fear and awareness of life-limiting diagnosis. Being taught about CHF was reported by patients as creating fear and sadness.28 30 50

Symptoms have a pervasive interaction on patients’ physical, mental, emotional and spiritual capabilities, reducing capacity. The interaction between CHF symptoms and patients’ physical capability makes activities from talking to exercising more difficult.26–32 34–38 40 41 45–47 50–58 Decreases in physical capability often requires patients to recruit others to help with physical tasks, shifting the burden from physical onto emotional through reduced independence.26–32 34 36–38 40 42 43 45 47 50–56 59 60 The co-ordination and recruitment of this assistance also increases demand on mental capabilities, with negative affects. We observed reported difficulties in comprehending information, decision making, forgetfulness and psychological distress.28 30 31 36–38 40 41 45 47 50–52 Emotional capability appears affected by symptoms in four main ways: (1) physical symptoms directly causing emotional distress,28–30 32 34 38 40 45 47 50–53 55 56 60 (2) emotional distress due to being reliant on others to do their work,26 29 34 38 41 42 45 55 (3) a grief process around loss of abilities,28–31 34 36 37 40 42 45 50–55 59 and (4) accepting a life-limiting diagnosis.27 28 30–32 34 36 37 40 51 52 55 59 Symptoms mean patients lose what was and begrudgingly accept a new normal.

Symptoms appear to impede a patient’s willingness to access capacity building external resources, such as, social support networks and healthcare systems. Patients’ ability to access their social networks is hindered by creating emotional distress and a lack of belonging26 31 40 45 46 50–52 59; yet, symptoms require reliance on family or friends due to decreased physical capability.29 32 34 35 41 45 49 50 53 55 60 There was also a sense that physical limitations meant adapting or giving up recreational and social activities leading to isolation and loneliness.28 30 40 50 51 53 59 Interactions with healthcare systems, around symptoms, were reported to cause fatigue, fear, confusion and depression.28 30 36 50 53 The ambiguous nature of CHF symptoms saw healthcare professionals sometimes mis-diagnose patients’; providing patients with wrong information, adding further confusion and harming relationship’s with healthcare professionals.33 36 47 Healthcare systems were described as costly in terms of energy.28 30 50

Symptoms negatively impacted financial resources draining family finances due to associated healthcare costs, a finding observed in articles from Japan, Iran, Kenya, USA, Pakistan, Italy, UK, Sweden and Thailand.26 28 30 36 40 42 46 52 53 Symptoms also alter a patient’s employability decreasing family incomes and changing family roles.26 28 30 36 40 42 46 52 53 Unaffordable healthcare and treatments meant that symptoms were ignored by patients until the symptoms were unbearable or that their lives were threatened.26 28 30 40

Symptoms impact on an individual’s capabilities, altering their role within social networks, through a reduction in performing desired activities. The lack of ability to engage in tasks like housework or baking may seem trivial, but patients experience grief, frustration, anxiety at these changes.26 28 29 31–36 38–42 45 46 49–56 59 If those alterations are central to their identity, then the impact of symptoms may extend to their perceived role in their social networks. Symptoms can strip the ability to provide for family, care for children and/or accepting the possibility of an early death.26 28–31 35–38 40 42–47 49–53 55 56 60 CHF treatments and self-care regimens designed to help patients were often recorded as disruptions thwarting patients’ engagement in their self-care or causing further negative impact on capacity.26 28–31 35–37 40 41 44 50 53 58 Disruptive side effects of medication meant medications were not taken and/or social activities were restricted.28 35–37 40 50

Symptoms create a barrier to patient engagement with self-care

Finally, the presence of CHF symptoms appears to form a barrier to patients doing the work of illness. Symptoms appeared to hinder patients in the following areas: (1) workload in performing tasks of CHF management, (2) workload in gaining knowledge of CHF syndrome, (3) capacity to use physical, emotional, mental and spiritual abilities, (3) individual capacity to access external resources, and (4) impact of changes to self and role. Table 5 provides exemplar quotes and figure 3 illustrates the interactions.

Table 5

Symptoms as a barrier to patients in engaging with self-care

Symptoms can stop patients from engaging in the work of illness, from daily tasks to specific illness management tasks. Persistent and severe symptoms turn simple tasks into impossible ones.26–30 33–38 40–42 44–46 48 50–54 56 59 60 Assigned complex CHF self-care regimens likely become insurmountable in the face of such symptoms.27 38 42 50 51 59 The subjective nature of CHF symptoms can form a barrier to both patients and healthcare providers acting in a timely matter to those symptoms.30 33 35 37 38 41 48 54 59 Resulting in delayed treatment seeking and poor illness management.30 33 35 38 45 48 51

Symptoms of CHF appear to form a barrier to patients’ physical, mental, emotional and spiritual abilities.27 29 31 32 36 37 40–42 45 50 52–55 57 59 60 The limitation in abilities creates a substantial deficit in their individual capacity, appearing to erode agency immobilising patients, who then suffer with CHF rather than living with it.29 32 37 40–42 45 50 55 60

Symptoms also create a barrier to patients’ accessing external resources. When symptoms were not correctly considered or interpreted by the healthcare professionals leading to negative feelings and mistrust from patients.30 35 38 45 47 Symptoms stop patients accessing their social support networks; they retreat from their social support networks fearing embarrassment and becoming burdensome.26 28 30 40 42 45 50 52 53 55 60

Symptoms inhibit patients from performing desired activities, creating a sense of personal worthlessness.26 29 30 32 36 37 40–42 45 46 50–52 54 55 58–60 The lack of individual capability alters their role in social support networks, forming a barrier to patients’ relationships and future lives.26 28–30 32 33 36 37 40 42 45 46 49–53 55 56 59 The loss of perceived roles in social support networks has high cost. The power of the metaphors (see figure 4) used in patients’ description of this interaction demonstrates the high degree of impact of symptoms on patient identity.

Figure 4

Exemplar metaphors used in description of how symptoms form barriers to engagement in desired activities and their perceived role.

Discussion

Statement of findings

Across the key domains of BoT (capacity, workload and impact) a complex interaction with symptoms was found; rarely driving patients to engage with self-care. We observed that CHF symptoms are intrinsic patients’ description of CHF experience, altering BoT; adding to the understanding of factors which influence BoT in chronic illness.15 The work of treatment burden by Jani et al61 outlined the areas in CHF, in which symptoms likely play a role (eg, evaluation of treatments based on symptom monitoring). Previous work aligns with our finding that physical symptoms and their emotional affect may have a substantial influence on those with CHF limiting their physical and social capabilities and impacting on their psychological well-being align.62–65

Symptoms as a driver to engagement with self-care were seen in the minority (<10%) of coded interactions with our BoT framework. This was unexpected as it is generally assumed that symptoms are the impetus for patients to engage with self-care. This finding, has parallels to the body of work relating to CHF patients’ delaying in seeking healthcare support due to multiple influencing factors (eg, previous negative experiences, perceived barriers to care, misattribution of symptoms, etc)66 rather than symptoms alone.67 Failures in self-care were previously blamed on a patients’ denial of illness or poor health literacy63 68 rather than as this work suggests symptoms having a more complex interaction with patient engagement with healthcare services.

Symptoms impede engagement with self-care was coded in 70.5% interactions within our BoT framework. The work of managing CHF was made more difficult not only in increasing task difficulty due to decreased capacity, but also through how symptoms are considered by healthcare professionals. The work of Lippiett et al11 described how different patient clinical pathways influenced BoT in chronic obstructive pulmonary disease (COPD) and lung cancer, where lung cancer patients are expected to follow a structure treatment pathway meant less BoT. Where patients with COPD are expected to be engaged with self-care meant greater BoT. Deficits in CHF healthcare service delivery has previously been observed to make the work of self-care more difficult.65 69 The high prevalence of this type of interaction within the framework suggests an intrinsic relationship with symptoms. Thus, emphasising importance of considering symptoms as more than an indicator for disease progression or treatment effectiveness, by healthcare professionals when assigning self-care work to patients. Adding to the work of Gonçalves et al,70 which identified a negative influence between BoT and the pathophysiology of illness across multiple health conditions.

Symptoms as a barrier to engagement with self-care was coded in 20.3% of the interactions within our BoT framework. If CHF symptoms removed patients’ capacity, an unsurmountable illness workload can be created. Similarly, Yu et al,64 reported in older adults with CHF the work around symptom monitoring contributed to patients’ physical and mental exhaustion; meaning poor self-care or reliance on social support systems. The high workload of CHF patients is similar to the exhausting and invasive BoT that Roberti et al71 noted in chronic kidney disease. From a patient perspective, symptoms strip their capacity and increase their workload creating overwhelming BoT. For them the effort of attempting to do the work assigned by healthcare professionals is not worth the physical effort or emotional stress as perceived benefits are so low. This affectively inhibits patients from engaging in self-care. Previous reviews on living with heart failure appear to neglect highlighting the importance of symptoms on capacity to do this work instead focusing on patients’ poor adaptation to their illness and its impact on their lives68 and their health literacy72 73; as well as inadequate healthcare encounters.65 72 73

A preliminary model describing how symptoms interact with BoT has been developed (see figure 5). Symptoms in CHF can erode patient agency through a complex interaction of symptoms decreasing capacity and increasing workload. This in turn leads to a loss of self-value and physical deconditioning, which together can inhibit a patients’ ability to engage with self-care regimens due to perceived overwhelming BoT.

Figure 5

Initial model of CHF symptoms interaction with bot theory primary constructs. CHF, chronic heart failure.

Current research on self-care in CHF focuses on the assumption of patient self-efficacy, which assumes given the right approach, intervention, and education a patient will have the capacity to engage in self-care regimens which will positively impact clinical outcomes. Recent revisions to the theory of self-care in CHF includes the consideration of symptom monitoring and management as a part of patients’ self-care work.74 However, the theory of self-care in CHF has yet to examine how symptoms might impact on the patients’ agency to perform self-care. To the best of our knowledge, no empirical work has yet explored the observed interaction between symptoms, self-care engagement in CHF, and how that influences BoT.

Strengths and weakness of the study

Our review is the first to explore qualitative literature on patients’ experiences of CHF with respect to the interactions of symptoms with BoT. It builds on the foundation of BoT theory15 with specific consideration for CHF patients. It characterises the types of symptom interaction with patient engagement in the context of BoT; which our PPI group recognised and verified as true to their experiences across multiple chronic illnesses.

Using BoT as a framework was a strength, leading to the original observation of CHF symptoms forming a barrier to patient engagement with BoT and self-care. Hinting at the possibility of an alternative explanation for why healthcare professionals may perceive high levels of non-adherence in CHF patients.

A strength of the synthesis of qualitative research is that conclusions drawn were viewed through multiple theoretical, epistemological, and ontological stance of the included studies’ authors as well as the authors of this review. Thus, commonalities observed are stronger due to heterogeneity of their context but could also be a limitation as the multiple interpretations may have altered the ‘true’ view of the original data. The review was restricted by the choice of published quotes from the included articles, our conclusions formed by using data from published primary studies to develop explanatory ideas the original researcher did not intend. Only English language articles were included.

Strengthening our analysis by using matrix queries, in Nvivo, to facilitate comparative pattern analysis as well as textual comparison,75 confirmed the patterns observed in the constant comparison process and provided the data to create visual illustrations of these complex interactions. Our coding analysis strategy, has precedent, as it was a refinement of Thomas and Harden23 methodology for thematic synthesis, which used a three stage coding process. We adapted their third stage to follow Gallacher et al14 work which takes second stage codes (characterise) and compares them against an a priori framework helping to explain the observations.

Future work

The role of symptoms in CHF and their interaction with patient engagement in self-care are not well understood and need more research. The authors are currently conducting empirical research to better understand this concept.76

Conclusions and clinical implications

Our synthesis suggests that relying on patients’ symptom experience as the impetus for them to seek healthcare support may not be as successful as currently assumed. Examination of symptom interaction with BoT in CHF has demonstrated a complex relationship. CHF symptoms appear to negatively interact with patients’ engagement with self-care regimens, including healthcare interactions, through the creation of overwhelming BoT. Symptoms increase patients’ illness workload simultaneously decreasing their capacity, with a detrimental impact on their lives. This interaction of symptoms suggests that patients with CHF may not be as poor at self-care as reported in current literature. CHF symptoms have an integral role in patient BoT predominately acting to impede patients’ efforts to engage in self-care. Healthcare professionals need to carefully consider patients’ capacity and current workloads when altering patient self-care regimens, as reducing workload may improve patient outcomes and improve engagement with self-care. The results of this review postulate that patients previously being blamed for poor self-care may be suffering from overwhelming BoT of which symptoms, which are modifiable are a major contributor. Our findings call for more research underpinned by BoT in CHF; exploring changes CHF service delivery and interventions to enhance patient self-care by focusing on their experiences.

Data availability statement

Data are available on reasonable request. Data presented in this work was taken from previously published articles.

Ethics statements

Acknowledgments

Paula Sands (PS), Health Sciences Librarian and Kate Lippiett (KL) for their assistance with the creating and adapting the literature searches used in this review. Patient Research Ambassadors (PRA’s) at Portsmouth Hospitals University NHS Trust for providing PPI in this review (Bill Ware, Anna Ganville-Hearson, Graham Edwards, Noreen Cole, Jane Ward, Tim Coney, Darren Jenkinson). Mr Mark Green (MG), Heart Failure Specialist Nurse, whose clinical expertise assisted in the confirmation of the symptom codes used in this review.

References

Supplementary materials

Footnotes

  • Twitter @RosalynnAustin, @l_schoonhoven, @AlisonProf, @CarlRMay

  • Collaborators Patient Research Ambassadors (PRA’s) at Portsmouth Hospitals University NHS Trust: Bill Ware, Anna Ganville-Hearson, Graham Edwards, Noreen Cole, Jane Ward, Tim Coney, Darren Jenkinson. Mark Green (MG), Heart Failure Specialist Nurse.

  • Contributors RA drafted this paper. RA, LS, and CRM developed the conceptual framework that informed this work. RA designed the review with support and guidance from CRM, LS, and PRK. RA assisted by CRM and LS performed the work of the literature searches. MC assisted in the screening of the articles and CRM and LS acted as the arbiter for any disputes. RA performed the first-line analysis and was guided by CRM, LS, and AR throughout constant comparison analysis. PRA and MG checked line-by-line symptom coding, refined the symptom coding structure and confirmed the results to be representative of their personal patient experiences. CRM, LS, AR and PRK critically reviewed the manuscript for intellectual and clinical content. All authors approved the final version of the paper. RA is the guarantor.

  • Funding This work was completed as a part of a fully funded Clinical Academic Doctoral Fellowship at the University of Southampton, Portsmouth Hospitals University NHS Trust, and the National Institute for Health Research (NIHR) Applied Research Collaboration (ARC) Wessex. This article is independent research funded in part by the NIHR ARC Wessex.

  • Disclaimer The views expressed in this publication are those of the author(s) and not necessarily those of the National Institute for Health Research, NHS or the Department of Health and Social Care.

  • Competing interests AR is a National Institute for Health Research (NIHR) Senior Investigator. The views expressed in this publication are those of the author(s) and not necessarily those of the National Institute for Health Research, NHS or the Department of Health and Social Care.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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