Barriers and facilitators to self-care in chronic heart failure: a meta-synthesis of qualitative studies

Search strategy

A meta-synthesis of qualitative studies was undertaken to address the research question; what are the facilitators or barriers to self-care in patients with CHF? Electronic data bases of Medline, Embase, CINAHL, Web of Science, Scopus and Google scholar were systematically searched for articles. A combination of MeSH terms and text words, under supervision of a health librarian, was used to explore each database. To increase the sensitivity of the search strategy and avoid missing valuable studies, a wide range of possible terms for self-care were used in combination with MeSH terms for chronic heart failure (e.g. heart failure and self-care). The most key words, terms and subject headings were; self-management, self-maintenance, self-monitoring, self-regulation, help-seeking, adherence , compliance, daily weight monitoring, sodium limitation, fluid restriction, sign, symptom, behavior, barriers, facilitators, help-seeking, physical activity and exercise.

Inclusion criteria and Quality assessment

Qualitative studies were included if they were peer-reviewed and published between1995 and June 2012. This timeframe was chosen because it corresponded to an upsurge in the discourse on self-management. Studies were in the English language and investigated at least one contextual or individual factor impacting on self-care in patients with CHF > 18years. The wide variety of qualitative methods made it difficult to compare and critique such research (Sandelowski & Barroso 2003; Sandelowski & Emden 1997). The absence of commonly applicable criteria to use in critically appraising these papers, as might be used in a systematic review of quantitative studies with regard to the sample size, process of randomization, and assessment of statistical significance limited the critical process (Solomon 2009). Of available guidelines for this purpose (Kuper & Levinson 2008; CG 2010; Collingridge & Gantt 2008; Kitto et al. 2008), criteria from (Kuper & Levinson 2008) were used (Table 1). Appraising the paper from (Falk et al. 2007), by way of example, is presented in Table 1. Based on these criteria, studies were ranked as very good, good, acceptable or unclear (Table 2, organized chronologically) Articles that had clear research aims and met at least four of the six appraisal criteria from (Kuper & Levinson 2008) were included. Two criteria; possibility of applying the results of study in other settings and addressing potential ethical issues were not taken into consideration as exclusion criteria because the generalizability of results emerging from qualitative studies is controversial (Myers 2000), and most article addressed ethical issues even if they did not explain details in reports, given the conventional requirement of most journals for evidence of ethical clearance of studies submitted for publication. Finally, Twenty-three articles were found to meet the inclusion criteria (Figure 1).

Was what the researchers did clear?	Yes, researchers explicated aim, methodology (e.g. sampling, inclusion criteria, data gathering) results and analysis with a clear scenario.
Was the sample used appropriate to its research question?	Yes, it was a phenomenology study. Sampling has clearly been articulated. 17 patients living with CHF who had personal experiences about HF to address the research question. Sample size was broad enough to capture many aspects of the CHF. However, they did not acknowledge socioeconomic situation and other associated factors
Were the data collected appropriately?	Yes, setting had been justified for data collection. Data were collected through recorded interviewing that is appropriate for exploring experiences of stakeholders in a phenomenology. Question as “what do you mean?” was used that is fit for phenomenological studies. Data collection was done by nurses familiar with CHF and continued to achieve data saturation.
Were the data analyzed appropriately?	Yes, The study had a clear description of data analysis process. Subcategories, categories and themes were derived from data by separate interpreters and then compared and combined. Some quotas from original data were used for supporting findings.
Can the results of this study be transferred to other settings?	Researchers did not discuss transferring results to other populations; however, they gave recommendations for caregivers and patients in general.
Did the study adequately address potential ethical issues?	Yes, researchers had a comprehensive presentation of ethical issues including achieving approval from ethics committee and chief physician plus informing the participants about study followed by consent from them

Author /year / country / reference number	Study design /tools/population	Aim	Was what the researchers did clear?	Was the aim /research question clear?	Is the sample used appropriate to its research question?	Were the data collected appropriately?	Were the data analyzed appropriately?	Can the results of this study be transferred to other settings?	Does the study adequately address potential ethical issues?
Martensson et al. (1997) Sweden	Phenomenology/ Interview (n = 12 patients)	To investigate how patients conceive their life situation	G**	G	A***	VG*	G	U****	G
Rogers et al. (2000) United Kingdom	In-depth interview (n = 27 patients)	Investigate patients’ need for information	G	VG	G	G	A	U	U
Buetow et al. (2001) New Zealand	Narrative/ Semi-structured questionnaire/ Interview (n = 62 patients)	To illustrate how patients cope with their illness	G	VG	G	VG	G	A	U
Riegel & Carlson (2002) USA	Interview/ Structured questionnaire (n = 26 patients)	To explain better adaptation in some people	VG	VG	G	VG	G	A	G
Horowitz et al. (2004) USA	Grounded theory/ Semi-structured interview (n = 19 patients)	To elucidate patients’ belief and knowledge & understand factors underling self-care routines	VG	G	A	VG	G	U	G
Scotto (2005) USA	Phenomenology/ Interview (n = 14 patients)	To explore the experience of patients living with HF and their adherence to prescribed regimens	VG	VG	VG	G	G	A	G
Eldh et al. (2006) Sweden	Narrative/ Interview + observation (n = 4 patients + 2 Nurses)	To explore patients’ participation/non- participation in a CHF care program	G	G	A	G	VG	U	VG
Riegel et al. (2006) USA	Mixed method/ Interview (n = 15 patients)	To evaluate a motivational interviewing intervention and identify the mechanisms by which it influenced HF self-care	G	VG	A	A	G	N*****	G
Rucker-Whitaker et al. (2006) USA	Focus group ( n = 25 patients)	To understand from the patient perspective what factors promote/limit retention in a self-management improvement program	A	G	A	A	A	N	U
Schnell et al. (2006) Canada	Semi-structured interview (n = 11 patients)	To explore self-care experience living with CHF	G	A	G	G	G	G	G
Falk et al. (2007) Sweden	Phenomenology/Interview (n = 17)	To describe how persons living with CHF perceived the maintenance of their daily life	VG	G	G	VG	VG	U	U
Davidson et al. (2007) Australia	Interview (triangulation study) (n = 17 patients +13 family + 16 key-informants) + literature	To describe health patterns, information needs, and adjustment process for overseas-born people with heart failure living in Australia	G	A	G	VG	G	A	VG
Riegel et al. (2007) USA	Mixed method/ Interview (n = 29 patients)	To describe how expertise in CHF self-care develops	G	VG	VG	G	G	G	U
Kaholokula et al. (2008) USA	Focus group (n = 11 patients +25 nurses)	To describe health beliefs, attitudes, practices and social and family relations important in CHF treatment	VG	VG	G	G	G	N	G
Rodriguez et al. (2008) USA	Grounded theory/ Semi-structured telephone interview (n = 25 patients)	To explore patients’ knowledge about CHF diagnosis and their understanding of cardiac care providers’ recommendations	A	G	A	A	G	N	VG
Sheahan & Fields (2008) USA	Semi-structured questionnaire/ Focus group (n = 33 patients)	To explore factors associated with sodium-restricted diet	A	G	G	G	G	G	VG
Dickson et al. (2008) USA	Mixed method/ Semi-structured interview (n = 41 patients)	To identify the influences of attitudes and self-efficacy on HF self-care management	VG	VG	VG	G	G	G	G
Clark et al. (2009) USA	Semi-structured interview (n = 42 patients + 30 informal caregiver)	To explore factors (perceived by patients and health givers) influencing willingness and capacity to manage CHF	G	VG	G	G	A	G	VG
Dickson & Riegel (2009) USA	Qualitative descriptive meta- analysis of their 3 studies (n = 85 patients)	To assess self-care skill in CHF patients and explore their skill needs	G	G	G	G	A	U	U
Granger et al. (2009) USA	Open-ended questionnaire/ In-depth interview (n = 6 patients and 6 physicians)	To explore patients’ and their physicians’ perspectives about adherence and how the exchange of information between them is experienced by each group	G	G	A	A	G	U	VG
Riegel et al. (2010a) USA	Mixed method/ Interview/ Open-ended question (n = 27)	To describe CHF self-care in men and women and to identify gender-specific barriers and facilitators influencing CHF self-care	VG	VG	A	VG	G	N	VG
Ming et al. (2011) Malaysia	Semi-structured interview (n = 20 patients)	To explore patients’ experiences of self-management and identify factors influencing patients’ adherence to medications	G	G	G	G	G	G	VG
Dickson et al. (2012) published online) USA	Mixed method/ Interview/Open-ended question (n = 30)	To describe the cultural beliefs about self-care, identify social factors influencing self-care and how these factors influence self-care practices	VG	G	G	G	G	G	G

* VG = Very good **G = Good ***A = Acceptable ****U = Unclear *****N = No.

This study was a part of research that has been approved by the ethics committee of the University of Sydney.

Facilitators and barriers related to CHF syndrome and the process of self-care

Buetow et al. reported that recognizing CHF symptoms, especially atypical symptoms such as dizziness, fatigue, sleepiness, cognitive decline and loss of consciousness, was difficult for patients with CHF (Buetow et al. 2001). Patients found it difficult to interpret (Ming et al. 2011) or respond (Granger et al. 2009) to complex symptoms, especially in combination. Horowitz et al. reported that patients found difficulty either in recognizing or responding to symptoms in an exacerbation (Horowitz et al. 2004). Furthermore, suffering from such symptoms reduced the ability of patients to engage in efficacious self-care (Clark et al. 2009; Granger et al. 2009). Even patients who had sufficient knowledge about HF and self-care frequently were unable to manage exacerbations of HF symptoms (Falk et al. 2007; Horowitz et al. 2004; Scotto 2005; Riegel et al. 2006). Also, functional limitation and dependency linked to CHF have been reported as serious barriers to self-care in patients with advanced HF (classes III and IV) by three studies (Martensson et al. 1997; Riegel & Carlson 2002; Granger et al. 2009).

Complexity of self-care processes and difficulty in adhering to dietary change was another barrier to self-care in patients living with CHF (Riegel & Carlson 2002; Sheahan & Fields 2008; Granger et al. 2009). Following a diagnosis of CHF, the prescribed actions can seem complex and require situational skills (Dickson & Riegel 2009). Granger et al. and Dickson et al. found that physicians and patients have differing perceptions of instructions and that as a result patients were at times unable to understand and apply what their doctor instructed them to do. (Granger et al. 2009; Dickson et al. 2012)

Facilitators and barriers related to personal characteristics

The lack of knowledge of CHF patients, especially regarding diet and salt restriction, and misconceptions about CHF and its symptoms leading to failure of understanding of the relationship between disease and symptoms, were prominent themes as barriers to self-care in the reviewed studies (Riegel & Carlson 2002; Horowitz et al. 2004; Eldh et al. 2006; Rodriguez et al. 2008; Sheahan & Fields 2008; Ming et al. 2011). Patients identified health awareness and understanding the consequences of ignoring the treatment plan and indicators of a worsening condition as facilitator stimulating care for themselves (Falk et al. 2007; Martensson et al. 1997; Schnell et al. 2006). Regarding duration of CHF, only one study reported that patients with long- standing CHF fared better than those recently diagnosed (Dickson et al. 2008). Using a disavowal coping strategy helped patients to affirm their physical health (Martensson et al. 1997; Buetow et al. 2001). However, using avoidance and denial reduced the capability of patients to care for themselves (Buetow et al. 2001; Riegel & Carlson 2002; Eldh et al. 2006; Rucker-Whitaker et al. 2006; Kaholokula et al. 2008). Acceptance had two contradictory consequences; as a barrier (Falk et al. 2007; Buetow et al. 2001; Riegel & Carlson 2002) and as a facilitator (Buetow et al. 2001; Riegel & Carlson 2002; Scotto 2005). Also, depression (Riegel & Carlson 2002; Riegel et al. 2007), anxiety (Rucker-Whitaker et al. 2006) and hopelessness were found to be negative factors for self-care maintenance, self-care management and self-care confidence, while positive belief in the future could serve as a catalyst for self-care (Falk et al. 2007; Martensson et al. 1997; Kaholokula et al. 2008).

According to the results, cultural beliefs and personal values might lead to a misguided conception of CHF (Dickson et al. 2012), difficulty with adherence to a healthy diet (Sheahan & Fields 2008; Dickson et al. 2012), preventing help-seeking (Clark et al. 2009), non-adherence to recommendations and health messages (Eldh et al. 2006; Kaholokula et al. 2008). On the other hand, cultural beliefs and personal values may support some aspects of self-care such as medication adherence (Dickson et al. 2012).

The influence of gender on self-care was explored by only one study (Riegel et al. 2010a). Although males and females exhibited equal medical adherence (self-care maintenance), females had lower self-care confidence and engaged less in self-care management and showed less accurate symptom interpretation than males (Riegel et al. 2010a). However, males had stronger social support than women and more positive perspectives on their lives and their ability to perform a self-care role than women (Riegel et al. 2010a). Cognitive decline and short term memory loss were important barriers to adherence to treatment and self-car plans especially in older people with CHF (Riegel & Carlson 2002; Granger et al. 2009; Ming et al. 2011; Dickson et al. 2012). Age as a direct influencing factor was not reported by the reviewed studies, though it was referred when speaking about disabilities and comorbidities (Riegel & Carlson 2002).

Facilitators and barriers related to environment and health care givers

Supportive environments, either mutual from other patients or from family, neighbours, nurses and physicians facilitated self-care in terms of self-care confidence, adaptation with disease and reducing anxiety, adherence to treatment and food regimen, symptom management, positive outlook, and motivation to obtain information and care for own selves (Falk et al. 2007; Martensson et al. 1997; Riegel & Carlson 2002; Scotto 2005; Riegel et al. 2006; Schnell et al. 2006; Ming et al. 2011; Dickson et al. 2012) and poor self-care was associated with poor family support (Riegel et al. 2007; Riegel et al. 2010a). Also, respecting patients (Schnell et al. 2006) and acknowledging their values encouraged them to follow health regimens (Eldh et al. 2006; Riegel et al. 2006). In contrast, poor communication skill of care givers (Ming et al. 2011) and lack of trust health care professionals (Clark et al. 2009) prevented patients from seeking information required for self-care. Applying traditional teaching methods (Dickson & Riegel 2009) and not spending sufficient time with patients to train them about self-care (Kaholokula et al. 2008) or a failure to teach them practically (Granger et al. 2009) were other reported problems.

Symptoms of chronic heart failure and comorbidities; complexity of symptom recognition

In recognizing and managing their symptoms, patients with CHF faced many difficulties and problems. First, confusing symptoms of CHF and cognitive impairment, especially in elderly patients, may reduce individuals' mental ability to recognize their symptoms and develop effective symptom management as a core for self-care (Ming et al. 2011). Second, illness severity may limit the capacity of a patient to manage symptoms. As an example, exhaustion and shortness of breath limited the individual’s ability not only for engaging in daily physical activity recommended in self-care instructions (e.g. 30minutes exercise daily) (Riegel et al. 2009) but stopped them managing when an exacerbation of CHF occurs (Granger et al. 2009; Ming et al. 2011). Third, symptoms might be attributed to other health problems and patients became confused in seeking to distinguish the reason and origin of their symptoms. In such situations, patients failed to take the correct action. As an example patients with CHF suffering, from arthritis might became confused about whether their swollen ankles are due to heart failure or arthritis (Riegel et al. 2009).

Furthermore, functional limitation may be compounded by other chronic problems such as forgetfulness, memory loss, diabetes, arthritis and chronic obstructive pulmonary disease in elderly patients (Martensson et al. 1997; Riegel & Carlson 2002; Riegel & Carlson 2002; Clark et al. 2009). Complex collections of problems produced frustration and feelings of hopelessness for patients, their families and even caregivers (Rogers et al. 2000; Riegel et al. 2007; Granger et al. 2009). It also is not easy for these patients to adhere to medical prescriptions and diet regimes (Dickson et al. 2012).

Insufficient knowledge

Misconception due to insufficient knowledge was associated with self-care challenges in all aspects including medical and dietary adherence, (Rogers et al. 2000; Rucker-Whitaker et al. 2006), weighing (Riegel & Carlson 2002), symptom recognition (Horowitz et al. 2004), treatment performance (Kaholokula et al. 2008) and help-seeking (Rodriguez et al. 2008). Although these results were not unexpected findings (Field et al. 2006), it elucidated and supported many other studies that considered knowledge a critical foundation for self-care in patients with CHF (Toman et al. 2001; Artinian et al. 2002; Bushnell 1992; Wright et al. 2003; Miche et al. 2003). Insufficient information not only directly prohibited patients from understanding and applying instructions, but also introduced other barriers to self-care in patients with CHF (Kaholokula et al. 2008; Clark et al. 2009; Dickson et al. 2012). For instance, consumption of salty foods recognized by some investigators as a behavior associated with cultural beliefs and/or social norms might simply be a manifestation of ignorance due to insufficient knowledge about the pathophysiology of CHF or the role of self-maintenance. Having sufficient knowledge and accurate information was necessary but not sufficient for behaviour change. Many patients were not able to incorporate their knowledge into their daily lives (Granger et al. 2009) because they were not equipped with practical skills (Eldh et al. 2006; Dickson & Riegel 2009).

Important factors associated with the failure of self-care programs included inadequate educational approach due to unskilled health educators (Eldh et al. 2006; Albert et al. 2002) or a gap in provider knowledge of self-care instructions (Lainscak et al. 2011), applying too general instruction for specific situations (Dickson et al. 2008) or inappropriate educational program-planning (Boren et al. 2009), lack of assessment of self-care educational programs (Lainscak et al. 2011). The majority of educational programs were short duration interventions without sufficient on-going support from providers to continue the programs and build self-care skills (Boren et al. 2009; De Lusignan et al. 2001; Sethares & Elliott 2004). Only half of patients were given comprehensive information about self-care monitoring and self-care maintenance (Boren et al. 2009). Considering the economic effectiveness of self-care (Jeon et al. 2009) researchers and health policymakers might well recommend applying more resources to evaluating specific programs for specific conditions of patients.

Environmental factors and cultural beliefs; motivators and hinders

There is evidence that patients with CHF suffered from social isolation (Jeon et al. 2010) that is associated with higher mortality in CHF (Horne & Weinman 1999). Although Sayers et al. pointed out that social support is not strongly associated with better self-care (Sayers et al. 2008), a review study stated that social support was prognostic in patients with HF (Ka & Lip 2002). The results of the current study showed that a supportive environment is critical for creating positive feelings and improving virtually all self-care components in patients with CHF (Falk et al. 2007; Martensson et al. 1997; Riegel & Carlson 2002; Scotto 2005; Riegel et al. 2006; Schnell et al. 2006; Ming et al. 2011; Dickson et al. 2012). Patients who have an opportunity to share their problems and those who participate in social activities manifest better self-care (Falk et al. 2007; Rucker-Whitaker et al. 2006). By way an example, eating alone reduced one’s motivation to cook and share meals resulting in an increased consumption of ‘microwave dinners’ often with high sodium content (Sheahan & Fields 2008).

Cultural beliefs (another theme that emerged from this review) might give patients a misguided conception of CHF, leading them to think, for example, that CHF is due to stress or simply associated with old age (Dickson et al. 2012). As a result, patients attempted to overcome a stressful situation by not following medical instruction. In addition, cultural preferences (e.g. favourite foods) often caused difficulty with adherence to a healthy diet (e.g. high salt consumption) (Sheahan & Fields 2008). However, cultural beliefs and personal values may support some aspects of self-care such as medication adherence. Dickson and her colleagues reported that spirituality influences self-care positively (Dickson et al. 2012).

In order to manage contextual problems such as cultural issues, health providers and educators needed to have good communication skills including reflective listening, empathy and acknowledging patients’ personal values (Jeon et al. 2010; Gilbert & Hayes 2009). Effective communication skills and trust have a reciprocal relationship; by improving one the other will be strengthened (Halpert & Godena 2011; Thomas 2011). However, according our findings, poor doctor-patient communication was an important barrier to self-care in patients with CHF (Kaholokula et al. 2008; Ming et al. 2011). Horne and Weinman found that medication beliefs are a stronger predictor of adherence than sociodemographic factors and clinical situation (Kramer 2010). A lack of faith in health care professionals along with personal values and cultural beliefs may stop patients from seeking help when symptoms worsen because the symptoms were culturally perceived to be uncontrollable and have to be accepted stoically (Clark et al. 2009).

Psychological factors

Evidence shows that depression in patients with CHF is much more prevalent than general population (MacMahon & Lip 2002). On the other hand, depression resulting in lack of energy leads to unwanted effects on self-care (Turner & Kelly 2000). In addition, depression may increase the risk of death in this group of patients (Horne & Weinman 1999). Whereas experiencing positive emotions allows people to engage in behaviours that protect their positive state (Frantz 2004). The current study indicated that hopelessness and depression was observed as a significant problem for patients with CHF, especially lonely women (Riegel et al. 2010a). This influenced self-care confidence, symptom recognition (self-care management), though, adherence to medicine (self-care maintenance) was not affected by level of depression (Riegel et al. 2010a). Providing circumstances in which patients may continue with their leisure activities and assisting patients to have a better quality of life can result in improved moods and self-care ability.

Patients with CHF facing stressful situations and changes in life circumstances, employ a range of defence mechanisms and coping strategies some enabling and others less so (Kramer 2010; Telford et al. 2006). Telford and colleagues found that common reactions of patients suffering from chronic diseases include denial then acceptance (Telford et al. 2006). The current review showed that avoidance and denial reduce the capability of patients to care for themselves (Riegel & Carlson 2002; Eldh et al. 2006; Rucker-Whitaker et al. 2006). Disavowal (palliating the emotional strain at the same time as affirming their health) assisted patients to cope with their mental stresses without ignoring the reality of their disease (Buetow et al. 2001). Acceptance is a coping strategy that had both positive (Falk et al. 2007; Buetow et al. 2001; Riegel & Carlson 2002) and negative (Buetow et al. 2001; Riegel & Carlson 2002; Scotto 2005) effects on different personality and living in various cultural contextual.