Heart failure (HF) is an important healthcare problem, and is associated with high morbidity and mortality rates [1]. Patients experiencing HF frequently have poor health related quality of life (HR-QoL), even when treated with modern evidence-based therapies [2, 3]; such as HF management programs, new pharmacotherapy approaches such as ACE-inhibitors and b-blockers, sacubitril/valsartran, and a comprehensive approach to patient care. HF often exists with other chronic diseases, especially in older patients, resulting in complex co-morbidity conditions [4]. HF affects 6–10% of the population aged 65 years old and over in the US, estimations have indicated with will increase to 25% of the population by 2030 [5, 6, 7]. It is also associated with high health care costs and reduced patient HR-QoL [2, 7, 8].

Progressive physical decline in advanced stages of the disease has been well documented, with distinct trajectories described for people with different progressive illnesses [9, 10]. As HF is a progressive syndrome, individuals usually experience physical and psychosocial issues, resulting in complex needs from the time of diagnosis until the end of their life [11]. Each exacerbation may result in death, and if the patient survives many such episodes, he/she will experience a gradual deterioration in health and functional status [12]. An individuals’ complex needs, comorbidities and symptom severity under an unpredictable trajectory creates palliative needs from the early stages [12]. Even though such issues should be addressed, palliative and end-of-life needs for patients with HF are often under-recognized and under-addressed [13, 14]. The notion of “total pain”, has been applied to the experience of having HF and therefore includes spiritual pain in which there is a lack of inner peace and personal integrity [15]. Psychosocial needs for patients with HF include empathy, counselling, independence on several factors including financial matters, support to fulfill family and social roles also the need to repair their sense of self where it has been disrupted by the syndrome [16].

People with HF not only experience losses in physical function but must also live with a variety of changes in their emotional, cognitive, social, economic and spiritual domains, which can result in a decline in their quality of life. Each patient has their own individual experience which can vary from patient to patient, it is usually unpredictable but invariably impairs his/her HR-QoL. At the same time, the literature shows that there are common aspects between these experiences [17]. Even though evidence exists for successful management programs that improve HF-related outcomes [18, 19], including readmission rates [20], testimonies from patients may show differing results (qualitative studies). Qualitative studies have already been carried out to explore the needs of patients with HF [4, 16, 21, 22, 23, 24, 25, 26, 27, 28]. What is lacking in the literature, to date, is a summary of those needs which are related to topics in order to develop a comprehensive overview of patient needs, thus affording the opportunity to design a person-centred approach to care provision. A qualitative meta-synthesis provides the opportunity to intergrade and synthesize the literature published to date, thus guiding clinical practice and future research. In addition, the results of a meta-synthesis can help health professionals (HP) develop interventions focusing on the patient’s true needs and expectations whilst also enabling then to detect vital aspects of the patient experiences that are currently not being addressed.

In order to develop a person-centred program, it is important to know what patients’ needs are based on their own perspectives. This will contribute towards developing person-centred management programs. For people with HF, support, understanding, receiving comfort, and being treated as a whole and unique person are vital [23, 29]. These could be offered to a patient through supportive care as the “care that helps the patient and people important to them to cope with life-limiting illness and its treatment — from before diagnosis, through diagnosis and treatment, to cure or continuing illness, or death and bereavement” [30], which aims to improve their HR-QoL [31]. The aim of the current review and meta-synthesis was to identify the needs identified by patients with HF.

A literature review was conducted using a qualitative methodology. Zimmer et al., (2006) [32] stated that meta-synthesis involves the process of comparing, translating and analyzing the original results that leads to the generation of the new interpretations. Initially, a systematic review of the literature was conducted. Two researchers undertook the searches using the keywords: (“needs” OR “need”) AND (“heart failure”) AND (“qualitative”) in the PubMed, CINAHL, PsycoINFO, and EBSCO databases, with outputs published prior to, and including, December 2019. The researchers screened the titles of the articles retrieved and identified the potentially relevant publications. The eligibility of the relevant abstracts was examined separately by the two authors, who both reviewed all abstracts. The two authors used standard pretest selection forms, independently, to assess eligibility. A third author was involved to reach consensus when necessary.

The inclusion criteria for the selection of the articles were standardized. Articles needed to use qualitative methodology involving patients with HF, and have explored patient needs from a patient perspective. Articles had to be published in the English language. Articles involving carers/caregivers were included in the review only where the patient results were presented separately. Exclusion criteria were defined as: articles including populations other than patients with HF or articles not presenting results for patients with HF separately, articles focusing on the patients’ experience or perspectives generally related to HF but not related to their needs, and studies exploring caregivers and/or family needs. The search yielded 518 articles from which 29 duplicates removed, a further 447 papers were excluded after the titles and abstracts of the articles had been reviewed. The remaining 42 articles were assessed for full eligibility, and 11 publications were found to fulfill the inclusion criteria and were therefore included in the systematic review and meta-analysis (Fig. 1). The main figures pertaining to the studies included are summarized in Table 1 (Ref. [4, 16, 21, 22, 23, 24, 25, 26, 27, 28, 33]).

Fig. 1.

Flowchart of the included studies.*Consider, if feasible to do so, reporting the number of records identified from each database or register searched (rather than the total number across all databases/registers). **lf automation tools were used, indicate how many records were excluded by a human and how many were excluded by automation tools. From: Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hofmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. British Medical Journal. 2021; 372: n71. For more information, visit: http://www.prisma-statement.orq/.

The methodological quality of the included articles was assessed using the ‘Consolidated criteria for reporting qualitative studies’ (COREQ) item checklist (Supplementary Tables 1,2) [34]. This was conducted in order to gain an overview of the methodological quality of the studies included. No study was rejected due to low methodological quality. The checklist consists of 32 specific items for reporting qualitative studies and includes generic criteria that are applicable to all types of research reports. The criteria included support researchers to report upon important aspects of the research team, study methods, context of the study, findings, analysis and interpretations. The methodological assessment of the included studies is shown in Supplementary Tables 1,2.

In order to verify the validity of the interpretation within the texts, a “thematic synthesis” methodology was used to undertake the current meta-synthesis [35]. This method is a three-step process: (1) Free line by line coding of the findings of the primary studies. (2) Free codes extracted were then organized into related areas to build descriptive themes. (3) Analytical themes were developed [35, 36]. The first step, line by line coding of primary results, was conducted independently by five researchers. Researchers gave one code in each initial patient quote. The resulting descriptive themes, with a representative initial quote, are presented in Table 2 (Ref. [4, 16, 21, 22, 23, 24, 25, 26, 27, 28, 34]). Additional information for all quotes from the primary studies, and their assigned codes, are presented in Supplementary Table 3.

In the next step, “new” codes were created to capture the meaning of the groups from the initial codes. This step of the methodology enabled the codes produced to be comparable. A draft summary of the findings organized by the descriptive themes produced was written by one of the researchers, then reviewed and revised by all of the researchers. Then, the researchers worked together to capture all of the linkages between the themes produced. A “map” was created, as shown in Fig. 2, with two themes and five sub-themes, to enable development of the final model. The researchers located similarities, then proceeded to group the codes into descriptive themes.

Fig. 2.

Second step of the meta-synthesis: free codes extracted with all possible linkages between the themes.

The final stage consisted of the researchers going beyond the systematic synthesis of primary studies, by interpreting the findings and results in a critical way. They started thinking the descriptive themes produced, first independently and thereafter as a group, which concluded in merging of the themes, which concluded with the production of five “new” themes. The “new” themes were created to combine similar needs which had emerged from the meta-synthesis. For instance, palliative care was the umbrella term for: pain relief, symptom relief and end of life care. This ‘new’ term/theme was created to cover all three themes. In this last step, the final themes were developed covering all topics related to the needs of patients with HF, as identified by the patients themselves. The final themes produced were: continuing person-centred care, social support, supportive care, palliative care and self-care management. In addition, all of the discussions between the researchers revealed the need for continuing support of the patients in order to be able to cope with the needs arising throughout the HF trajectory; and that is how the core theme ‘Wind beneath my wings’ arose (Fig. 3).

Fig. 3.

Final themes covering all topics related to patients with heart failure needs.

From the systematic review eleven studies were assessed as eligible and were included in the present review and meta-synthesis. Through the three-step process of the thematic synthesis one core theme (namely ‘Wind beneath my wings’), and five main themes were revealed: continuing person-centred care, social support, supportive care, palliative care and self-care management. A description and relevance of the core theme, and each of the main themes, is listed below.

This meta-synthesis provides an illustration of some of the needs that occur in the lives of patients with HF. The main themes, discovered from the results, covered patients’ needs depended upon fluctuations occurring in the illness trajectory, patients’ functional status and illness severity [38]. Although these revealed themes have already been reported in previous studies as important aspects in HF management, the new input highlighted here is that they come directly from patients with HF themselves, and the challenge is now to find mechanisms to respond to them in an ongoing process.

The current meta-synthesis provides information focusing in two aspects of HF management. Firstly, the important active role of the patient being the protagonist in dealing with his/her illness, and secondly the results highlighted that the actions of all the mechanisms of disease control needed to reach the patient with HF and his/her needs.

Either way, the results remain the same, health care professionals (HPs) should consider all of these aspects, and in collaboration with the patient find ways of addressing their specific needs. Each person is unique and has a different perception of his/her life, even when experiencing similar situations of uncertainty and restriction with others [45]. Thus, the key solution remains person-centred care. Ekman et al. (2011) [44] refers to giving the person the opportunity to present her/himself as a person in the form of an illness narrative as a starting point for building a collaborative, egalitarian provider (care and treatment expert)-patient (person expert) partnership that encourages and empowers persons to actively take part in finding solutions to their problems. “Wind beneath my wings” is the role of the HPs (the wind), who encourage patients (the wings) to take part in their care, to control and take decisions for their own health and HR-QoL. Patient empowerment helps increase patient awareness as well as encouraging mutual trust and open communication between patients and HPs [46]. Following HF patients in a closer manner, checking limitations and ensuring that changes which frequently occur are identified, especially in an unpredictable syndrome as HF, is valuable [17]. One of nurses’ priorities is to get to know the patient and how this patient copes with the syndrome [45, 47].

It is important that HPs place the patient with HF at the centre of every care effort and help him/her to address his/her unmet needs, thus achieving the best possible HR-QoL [44]. Kane et al. (2015) [17] refer to CPCC as the answer to the management challenges for HF, by incorporating patient preferences, values, beliefs, illness understanding, illness experience and information needs. All of the above are considered within the decision-making processes, encouraging patient engagement and collaborative goal setting. But is this enough to address the unmet needs of HF patients?

The answer is CPCC in the context of supportive care. Supportive care could be developed and provided starting from a CPCC perspective. The concept of CPCC integrates patient and family preferences and needs into the goals of care, manages symptoms to the level of comfort desired, and attempts to reduce the burden of illness on both the patients and their families [48]. In order to undertake this, HPs should extrapolate the unmet needs of each patient with HF via ongoing processes, as the needs change rapidly depending on the trajectory of the illness [9]. Therefore before providing supportive care, it is necessary for HPs to assess patient’s needs and develop a concrete and consistent process that regularly monitors patients’ with HF needs [44]. Supportive care is multidisciplinary holistic care provided for the patient and their family alongside the medical treatment(s), from the time of diagnosis aiming to prolong life and improve HR-QoL, and continues through into end of life care [49].

Even though a lot of successful management programs and therapies have been developed for HF patients, evidence show that people with HF frequently lack HR-QoL [20], and do not always feel that HPs respond to their needs [44]. Continuous supportive care throughout the illness trajectory may change the perception of the care provided.

The meta-synthesis quotations constitute the need for a CPCC model in patients with HF, that focuses on the ongoing needs of the individual and adapt as the needs change according to the passage of time, the evolution of his/her syndrome, their socio-economic factors [50], their environment, abilities, family and friends environment [51], the country’s health care system, the technology and the possibilities of its application in everyday life and in chronic diseases [52], in short it is the general supportive care of a patient with HF across its entire spectrum and range of expressions [33].

More investigation and research is necessary to document the appropriateness of this care model, and the possible implications for all parties in HF care such as patients with HF, their families, medical doctors and other HPs, the community and state parties.

Our meta-synthesis has certain limitations. Following completion of the literature review, the studies which were included were qualitative studies with limited numbers of participants, cumulatively from all 11 studies, 190 patients with HF were involved. It is understandable that the number of patients cannot be considered as representative of all patients with HF. However, this meta-synthesis examined prospects, views and thoughts of patients with HF, and is the first study to do this within this specific population.

The strength of this meta-synthesis is that the meta-synthesis team comprised of qualified cardiology and HF advanced nurses and a practicing physiotherapist, all dedicated to caring for patients with HF throughout the entire disease trajectory.

This review gives valuable information for what patients really need. The results may contribute to further develop management programs for HF patients, which become more effective in terms of clinical outcomes including adherence to therapies, acute events, HR-QoL, perceived care, and re-hospitalization.

The use of supportive care in a CPCC management program, may tackle obstacles in patient non-adherence and bad communication with HPs.

$\bullet$ The present systematic review and meta-synthesis of qualitative studies explored the needs from the perspectives of people with heart failure. Those needs have been collected into groups which reveal the main themes identified from the meta-synthesis. All needs seem to be present throughout the entire trajectory of HF, and interact with each other in a way that they all need to be addressed and not avoided. The outcomes show it is important to cope with all needs via continuing support.

$\bullet$ Recognizing the need for continuing support of persons with HF emphasizes new implications in practice. It highlights the dynamic relationships people with heart failure have with health professionals. Often, it is necessary to introduce new behaviors to people with heart failure (e.g., self-management, exercise, adherence to the therapy). And very often health professionals fail to establish this. A possible reason for this is that people with heart failure need continuing support to make all of the necessary changes and to cope with the needs they describe. If this information is taken into consideration, the focus in management of patients’ with HF needs is having the people with HF at the centre of the care system, and continuously supporting them to establish all of the aims of care.

MK and EL designed the research study. All authors contributed towards analyzing the data (EL, MK, KP, AS, IL), and AS, KP and IL wrote the methodological assessment and the results of the manuscript. MK and EL wrote the rest of the manuscript. All authors read, made changes and approved the final version of the manuscript.

Not applicable.

We would like to express our gratitude to all those who helped us during the writing of this manuscript.

This research received no external funding.

The authors declare no conflict of interest.