Descriptive qualitative study of breathlessness and its management of Turkish individuals with self-reported heart failure

Abstract

Aims

To explore the experiences of individuals with heart failure, with a specific focus on elucidating the full spectrum of symptoms experienced and their subjective descriptions of breathlessness and self-management strategies regarding socio-cultural-behavioural context.

Design

Qualitative descriptive study underpinned by critical realism and situation-specific theory of heart failure self-care.

Setting

Participants from various settings (hospitals and community) in Southeastern Türkiye.

Participants

Adults reporting heart failure and breathlessness.

Methods

Semi-structured interviews were carried out with 20 individuals (11 women and 9 men). Data were audio-recorded and transcribed. Participants were asked to describe their symptoms, experiences with breathlessness, self-management strategies and health needs from their perspectives. The interview data were analysed using reflexive thematic analysis.

Results

There were a range (31 physical and 7 psycho-social behavioural) of symptoms experienced by participants. This included fatigue, difficulty sleeping, pain (not including chest pain) and fear about death and dying. Based on reflexive thematic analysis of semi-structured interviews, six main themes were identified. First two themes (knowledge and misconception, and experience of breathlessness) were related to breathlessness experience and knowledge. The third theme (culture and religious consideration) highlighted the importance of cultural and religious perspectives in breathlessness regarding Turkish socio-cultural-behavioural context. Themes four (breathlessness self-management/physical) and five (breathlessness self-management/psychological) were identified as self-management strategies for breathlessness. The need for improved health behaviours (improved health behaviours) was also identified.

Conclusion

Breathlessness and self-management strategies are affected by individual perspectives in relation to their socio-cultural-behavioural context. Understanding individuals’ unique breathlessness experiences regarding their socio-cultural-behavioural context assists in the identification of possible individualised-care strategies to improve their life and care quality in heart failure. We recommend creating a person-centred symptom assessment strategy with reference to culture or transculture guided by nurses. This will help to understand individuals’ unique symptom profiles and tailor responses to their needs.

STRENGTHS AND LIMITATIONS OF THIS STUDY.

• This study is the first to explore the individual reality of subjective breathlessness experience within the socio-cultural-behavioural context in Türkiye, which has never been explored in the literature.

• This study was developed with patient and public involvement and engagement.

• This study was underpinned by critical realism and the situation-specific theory of heart failure self-care.

• There is concern that self-reported heart failure may carry a risk of recall bias among participants, which could lead to an overemphasis on the results.

Introduction

Heart failure is characterised by various symptoms, including breathlessness, fatigue, ankle swelling and exercise intolerance. These symptoms have been consistently associated with increased mobility limitations, worsening trajectory of heart failure and rehospitalisation rates.^{1 2} The accurate identification and assessment of these symptoms holds significant importance in devising appropriate interventions and strategies aimed at reducing hospitalisation rates, ultimately leading to an improvement in overall health outcomes.^{1 3}

Notably, breathlessness and fatigue emerge as the most prevalent symptoms.^{1 4} The severity of breathlessness has been identified as a significant indicator in the diagnosis and progression of the heart failure trajectory.¹ Dyspnoea, or breathlessness, in the context of heart failure, is primarily associated with alterations in the ventilation/perfusion ratio and respiratory muscle atrophy. This manifests as increased ventilation relative to healthy individuals, resulting in lower peak oxygen uptake (VO₂) and an elevated slope of minute ventilation to carbon dioxide production (VE/VCO₂).⁵ Dyspnoea is defined as a ‘subjective experience of breathing discomfort’.⁶ This subjective sensation of breathing discomfort arises from the interplay of various physical, psychological, social and environmental factors, ultimately leading to psychological and behavioural responses.⁷

The presence of breathlessness (ranging from 61% to 81% among individuals with heart failure in Türkiye)^{8 9} has profound implications for functional limitations and lifestyle modifications, often resulting in the difficulties with activities of daily living including pleasurable activities such as hobbies.⁷ Moreover, breathlessness exerts a significant impact on various physical and emotional symptoms, including sleep disturbances, heightened stress levels, anxiety, eating difficulties and problems with walking.⁷ Acute episodes of breathlessness have been linked to increased rates of hospital admissions and mortality among individuals with heart failure.^{10 11}

People with heart failure often use individual coping strategies based on their experiences and the degree of breathlessness they face.^{7 12} Hence, it is advisable to integrate symptom evaluation within self-care strategies to optimise symptom management.¹³ The actions taken by individuals with heart failure in response to their specific symptoms are intricately linked to their interpretations, experiences and reflections on these symptoms from a symptom-focused perspective.¹⁴ These symptoms evaluation and management has been affected by many physical, psychological, social and environmental factors.¹³

Although recommendations for self-care management (including breathlessness management) in Türkiye come from international guidelines, which include studies from high-income countries, it would be a mistake to apply them in the Turkish context without careful consideration. First, the context of heart failure in Türkiye is different from that of other countries. Contrary to the clinical studies used in international guidelines so far, the female and younger age population in Türkiye comprises a significant portion of heart failure cases.^{15 16} Second, cultural and social backgrounds have an effect on symptom experiences among individuals with heart failure.^{3 17} Regarding the situation-specific theory of heart failure self-care,¹⁷ patients’ experiences and management of heart failure are solely determined by their physiological condition, and by their social environment, cultural beliefs and personal characteristics. Therefore, heart failure is experienced differently across diverse populations, shaped by factors such as socio-economic status, access to healthcare, family support and cultural perceptions of illness. Understanding these socio-cultural dimensions allows for more tailored and effective interventions, ultimately improving patient outcomes by aligning care strategies with the unique needs and contexts of each individual. However, insufficient research exists regarding the full spectrum of symptoms and the phenomenon of breathlessness among Turkish individuals with heart failure. There is, therefore, a need for a qualitative investigation to comprehensively explore the experiences of Turkish individuals with heart failure, with a specific focus on elucidating their subjective descriptions of breathlessness in their socio-cultural-behavioural context.

Methods

Study aims and research questions

The main purpose of this descriptive qualitative study is to explore the experiences of Turkish individuals with heart failure, with a specific focus on elucidating the full spectrum of symptoms experienced by them and their subjective descriptions of breathlessness and self-management strategies regarding their socio-cultural-behavioural context. The five research questions have guided this study (box 1).

Box 1. Research questions.

1. What symptoms are experienced by Turkish individuals with heart failure?

2. How is breathlessness described from a patient perspective in Türkiye?

3. What are the impacts/consequences of breathlessness on daily life and health for people with heart failure in Türkiye?

4. How do they manage their breathlessness?

5. What are the health needs of individuals with heart failure in Türkiye?

Design and setting

The present study adopted a descriptive qualitative approach guided by Sandelowski.¹⁸ This design is appropriate to document people’s experiences, views and insights.¹⁹ The choice of the descriptive qualitative design was the most appropriate approach to explore Turkish individuals’ symptoms, breathlessness experiences and self-management strategies. This approach entails analysing narrative detail, contextualising experiences, structuring narratives, uncovering meanings and interpreting subjective experiences.²⁰

This study was underpinned by critical realism^{21 22} to explore how participants actively constructed and assigned meaning to the ‘reality’ of their symptom experiences focusing on causation, mechanisms and contexts. This study was also guided by the situation-specific theory of heart failure self-care^{13 17} to investigate how the interplay of factors influencing breathlessness affect the decision-making process of heart failure self-care within participants’ socio-cultural-behavioural context. This theory describes symptom perception as shaped by both healthcare interactions and individuals’ physiological, psychological and socio-cultural responses to heart failure self-care management. The combination of critical realism^{21 22} and the situation-specific theory of heart failure self-care¹⁷ provides a nuanced view of how naturalistic decisions are made by participants regarding their self-management and symptom interpretation. While individuals make decisions, they operate within a complex, objective reality through social constructs and individual interpretations (critical realism). They must also adapt their actions based on the specific context of each situation (situation-specific theory of heart failure self-care). This study considered the situation-process-action axis of the theory.¹⁷ Regarding the situation axis, the study considered factors such as the person (age, sex, knowledge, values, motivation and coping strategies), the environment (social support and local policies) and the problem (symptoms) to understand how these affect decision-making. The process axis included strategies and adaptations required for making quick decisions. The action axis represented the outcomes or practical steps taken in response to symptoms as part of self-management strategies.

Semi-structured interviews, guided by a predetermined set of open-ended questions, were conducted to collect data on the experiences of breathlessness among individuals with heart failure in Türkiye. The participants were recruited from diverse settings via online research advertisements, including hospitals and community, across urban and rural areas of different cities in Türkiye.

Study sample

The recruitment of participants for one-to-one interviews was carried out using purposive²³ and snowball sampling²⁴ techniques. Interested individuals who contacted the first researcher (MS) via email or phone underwent a preliminary screening to assess their eligibility based on the study’s inclusion criteria (table 1). 20 adults who self-reported having heart failure and breathlessness willingly participated in this research. Participants were selected based on self-reported heart failure diagnosis and breathlessness experiences. Although there is a concern regarding the use of self-reported heart failure, with the appropriate questioning techniques as described in previous literature,^{25 26} it can be used. Online supplemental appendix S1 provides information on how self-reported heart failure diagnosis is considered.

Table 1. Eligibility criteria.

	Inclusion criteria	Exclusion criteria
People with heart failure	Aged >18 years. Having heart failure (acute/chronic). Understanding and speaking in Turkish. Able to self-report details that are required for the study (heart failure duration, last 12-month hospital admission due to heart failure, comorbid condition, etc). Having breathlessness experiences. Being able to provide consent before starting the interview.	Aged <18 years. Having congenital heart disease. Not able to understand or speak in Turkish. Not able to provide their consent as it is legally required to participate in this study. Having cognitive impairment, untreated current psychiatric symptoms or serious long-term conditions that could impair the ability to provide informed consent.

Twenty adults participated in this study from the Mediterranean, Southeastern and Eastern regions of Türkiye. While these regions display a mix of educational levels and religiosity, participants were intentionally selected to represent as diverse a mix as possible, aiming for a representative sample of the heart failure population that is sensitive, diverse and comprehensive. Although 93% of individuals over 25 years in Türkiye have at least a primary school education,²⁷ this is not an indicator of health literacy. A low education level does not prevent one from developing the health literacy required to practice effective self-care.^{28 29}

Data collection

Semi-structured interviews were conducted with the participants who agreed to participate in the study and gave the required consent to participate between June and October 2022. The aim was to explore the experiences of individuals with heart failure through their own daily life stories with five interview questions and sociodemographic questions (including age, sex, education level, heart failure duration, etc) (online supplemental appendix S2). This interview guide was developed based on a previous qualitative study carried out in the UK⁷ and reviewed by the research team and public advisors. The interview covered the following issues:

• Identifying the symptoms experienced by individuals with heart failure.

• Understanding breathlessness and other symptoms of heart failure.

• Impact of breathlessness on everyday life.

• Breathlessness management strategies.

• Needs for improved health behaviours.

MS conducted all (face-to-face, telephone and email) interviews in Turkish. Telephone and face-to-face interviews were audio-recorded, transcribed verbatim in Turkish and translated into English. Interviews via email relied on written answers to questions, then translated from Turkish to English. The email interview removes any challenge posed by geographical distance, and is suitable for sensitive topics as it gives the interviewee time for reflection before answering, but it does require technical literacy and poses certain concerns related to confidentiality.^{30 31} Three participants required email interviews due to their inability to allocate an average of 1 hour for a phone interview. These participants were educated and lived in different cities from the researcher. The email interviews were conducted over a series of 9–12 exchanges following the sociodemographic survey. These email exchanges spanned from 1 day to 1 week. Email interviews provided participants with time for reflection before answering,³⁰ often resulting in more direct and concise responses. However, this method also allowed the researcher time to formulate follow-up questions.³⁰ Nevertheless, there is a potential bias in using email interviews, such as the lack of non-verbal observations, which can be important for understanding participants’ emotions and reactions. Each participant has had a (Turkish) pseudonym for the transcription.

Data analysis

English and Turkish transcripts were imported separately into NVivo V.12³² for data analysis. The semi-structured interviews were analysed using a reflexive thematic analysis developed by Braun and Clarke.³³ This analysis included six phases of the data analysis, involving in-depth recording to combine codes and themes.

1. Familiarising: this included reading, re-reading, listening to audio-records and making brief notes until getting familiar with the data.

2. Generating initial codes: after the data familiarisation stage, the first initial codes were generated by MS through line-by-line inductive and deductive indexing of English and Turkish transcripts in NVivo V.12. The codes created from Turkish and English transcripts were compared to reach the final version.

3. Generating initial themes: identified codes were grouped into descriptive initial subthemes and main themes based on a combination of the factors of the research questions.

4. Developing and reviewing themes: identified candidate main themes and subthemes were double-checked by other researchers.

5. Refining, defining and naming themes: identified themes were presented in a table with their definitions and names to discuss with one heart failure specialist nurse and two public advisors.

6. Writing-up: final reports of findings were written and presented.

Rigour

The (PhD/first) researcher professionally transcribed and translated audio recordings from Turkish to English, which were then verified for accuracy by one of two bilingual researchers (Umit Yavas and Aycan Celik). Transcripts were subsequently checked for quality and confidentiality by other team members. Coding was performed using inductive and deductive approaches, refined by the research team to establish final themes, ensuring objectivity and reliability. Public advisors reviewed themes and helped ensure quotes matched with themes. Transferability was ensured through sample characteristics and representative citations.

Patient and public involvement and engagement

This descriptive qualitative study included patient and public involvement and engagement to ensure that the study method and findings support more comprehensive and real-world symptom experiences in heart failure. Five volunteer advisors (two Turkish nurses working in the cardiovascular wards; one person with heart failure in Scotland; one family member of a person with heart failure in England and one heart failure specialist nurse in Scotland) were included to develop and make more culturally relevant research.

Reporting method

This study were reported using the ‘Consolidated Criteria for Reporting Qualitative research’, a 32-item checklist for interviews and focus groups³⁴ (online supplemental appendix S3).

Findings

Eleven face-to-face, six telephone and three email interviews were conducted. The average interview duration was 29.05 min (21–65 min) for telephone and face-to-face interviews. Three email interviews were conducted based on the written answers to the interview questions.

Characteristics of sample

The mean age of the 20 participants was 55.5±16.2 years (ranging 18–83 years) (table 2). There were 11 women and nine men. 16 participants were Turkish. 13 participants had some education. Four participants were retired. Nine of the women had home duties as their employment status. 17 participants were married and living with their partner. 13 participants did not have a caregiver. The caregivers of the participants were family members.

Table 2. Participants’ characteristics (n=20).

Participants’ characteristics (self-reported)	Total (n=20)
Sociodemographic characteristics
Age (years)
Mean±SD	55.5±16.2
Median (range)	56.5 (18–83)
IQR (lower quartile-upper quartile)	24 (44.7–68.7)
Gender, n
Female	11
Male	9
Ethnicity, n—white (Turkish)	16
Turkish is not the first language—yes, n	2
Education status, n
No education	6
Primary school	6
Secondary/High school	4
University degree	3
Postgraduate degree	1
Relationship status, n
Single	3
Married	17
Employment status, n
Employed full-time	6
Employed part-time	1
Retired	4
Homemaker	9
Caregivers, n
Partner	4
Children/Grandchildren	3
No need	13
Clinical characteristics
Heart failure duration (years)*
Mean±SD	8.1±5.0
Median (range)	6.5 (1–17)
IQR (lower quartile-upper quartile)	8.5 (3–11.5)
Previous hospital admission (last 12 months)—yes, n	9
Clinical profile, n
Acute myocardial infarction	12
Type 2 diabetes	9
Hypertension	8
Atrial fibrillation	1
Sleep apnoea	1
Acute pulmonary oedema	6
None—any comorbidities	7
Heart failure in family history—yes, n	8
Total individual self-reported symptom
Mean±SD	8.7±3.6
Median (range)	9 (3–15)
IQR (lower quartile-upper quartile)	5.2 (6–11.3)

^*One participant did not report the date of her initial diagnosis.

Based on self-reported clinical characteristics, eight participants had a heart failure family history (table 2). The average year duration of heart failure was 8.1±5.0 (ranging from 1 to 17 years). In the last 12 months, nine participants had hospital admission due to heart failure. Type 2 diabetes (n=9) and hypertension (n=8) were the most reported comorbid conditions. Seven participants did not have any other conditions.

Full spectrum of self-reported symptoms

The average of the total individual self-reported symptoms was 8.7±3.6 (ranging from 3 to 15) (table 2). Participants were provided with descriptions of various symptoms related to living with heart failure. Apart from breathlessness, 31 physical and seven psycho-social behavioural symptoms were reported. Among these symptoms, fatigue/tiredness, difficulty sleeping, other body part pain and fear about death/dying were reported more than other symptoms (table 3).

Table 3. Symptoms identified during the interviews with participants (n=20).

Clusters	Symptoms		No of participants
Physical symptoms	Breathlessness		20
		Waking up breathless at night	5
		Difficulty breathing when lying flat	4
		Difficulty breathing when lying on the left/right side	5
		Breathlessness with exertion	8
		Breathlessness with walking/climbing stairs	18
		Breathlessness at rest	1
	Fatigue, tiredness		13
	Lack of energy, weakness		2
	Lack of appetite		7
	Swelling of arms or legs		6
	Dry mouth		1
	Sweats		7
	Problem with urination		2
	Constipation		2
	Feeling drowsy		7
	Dizziness		2
	Numbness/Tingling hand/feet		2
	Pain (eg, back pain or other bodily pain)		9
	Chest pain		7
	Headache		4
	Nausea/Vomiting		3
	Weight loss		1
	Weight gain		1
	Feeling bloated		5
	Difficulty sleeping		10
	Chest pressure/tightness		4
	Palpitations		3
	Irregular heartbeat		1
	Rapid heartbeat		5
	Shaking (body/hands)		3
	Wheezing		3
	Bendopnoea		2
	Restlessness		2
	Poor mobility/walking problems		3
	Passing out		1
	Hair loss		1
	Bruises easily		1
Psycho-social behavioural symptoms	Fear (about death/dying)		9
	Stress		6
	Worry		2
	Feeling anxious/nervous		4
	Depression		3
	Concern about the uncertainty of future		3
	Negative emotions	Disturbing thoughts	3
		Loss of interest in life	1
		Unhappy	1
		Sad	1
		Angry	2
		Scared	2
		Boredom	3
		Limited socialisation	2

I feel heart failure with palpitations, chest pain, restlessness, and difficulty breathing. Lack of appetite, the constant feeling that this heart will stop, stress and some days sleeplessness. (Cansel)

A situation of heart failure, breathing that feels like fainting, fainting with breathlessness, and fear about dying, especially effort and stress, and sleeplessness trigger this situation even more. (Berk)

Identified themes

The findings are presented below in relation to the identification of themes associated with research questions. There are six themes and 18 subthemes, each representing a range of breathlessness experiences (table 4).

Table 4. List of themes for breathlessness experiences, management and needs for improved health behaviours.

Themes	Subthemes	Research question
1. Misconception and knowledge about breathlessness	1.1. Knowledge and awareness of breathlessness	1. How is breathlessness described from a patient perspective in Türkiye?5. What are the health needs of individuals with heart failure in Türkiye?
	1.2. Comparison with others
2. Experience of breathlessness	2.1. Psychological vulnerability	1. How is breathlessness described from a patient perspective in Türkiye?3. What is the impact/consequence of breathlessness on daily life and health for people with heart failure in Türkiye?
	2.2. Physical vulnerability
	2.3. Interactions with other symptoms
	2.4. Living with uncertainty and fear of death and dying
3. Cultural and religious considerations	3.1. Religious life disruption	1. How is breathlessness described from a patient perspective in Türkiye?3. What is the impact/consequence of breathlessness on daily life and health for people with heart failure in Türkiye?4. How do people in Türkiye manage breathlessness themselves?
	3.2. Belief in Allah (God) and intuition
	3.3. Complementary and alternative strategies
4. Breathlessness self-management strategies/psychological	4.1. Self-affirmation	4. How do people in Türkiye manage breathlessness themselves?
	4.2. Avoiding undesirable situations
	4.3. Engaging with hobbies
5. Breathlessness self-management strategies/physical	5.1. Reliant on only their doctors	4. How do people in Türkiye manage breathlessness themselves?
	5.2. Inputs from significant others
	5.3. Maintaining normality
6. Improved health behaviours	6.1. Adequate education	5. What are the health needs of individuals with heart failure in Türkiye?
	6.2. Psychological support
	6.3. Long-term management strategies

Theme 1: misconception and knowledge about breathlessness

There was an association between knowledge and breathlessness interpretation and management strategies. Subthemes were knowledge about breathlessness (and heart failure) and comparison with others.

Knowledge about breathlessness (and heart failure)

Inaccurate knowledge (due to poor communication between healthcare providers and patients; financial/insurance issues; source of knowledge, etc) and misconceptions were reported by the participants. Participants (except those with a family history of heart failure) seemed to not have any information/knowledge about heart failure. Most participants reported that they did not receive any information or education about their symptom experiences (including breathlessness) and management strategies associated with heart failure:

A person can also do some of these things, but there is nothing like that about heart failure. I spent a lot of time in the hospital. I have been to many hospitals, and I have not received such training from doctors in any of them. But it would be better if they enlighten us. So, I haven’t received any education and training until now. (Alp—heart failure duration: 14 years)

With the lack of healthcare education, participants did not interfere with their breathlessness due to the uncertainty of the source of breathlessness related to heart failure and other risk factors/comorbid conditions/ageing/family background. Some participants described their breathlessness associated with ‘obesity’, ‘diabetes’, ‘advanced age’ and ‘genetic transitions of their parents’:

I’m overweight, and weight can be a thing, which affects walking too much with shortness of breath. I think this is the explanation for the shortness of breath on this walk because I am overweight. (Umut)

Comparison with others

Some participants reported that their breathlessness experiences were normal or less problematic when they compared them with others. Most of the participants compared their breathlessness experiences with their healthy friends and concluded their breathlessness experiences were same with their friends. Therefore, they did not think it was a main problem in their life or needed any special management strategies:

You know, the person climbing the stairs next to me, in the same way, their hearts beat faster, and they also experience breathlessness. (Leyla)

Theme 2: experience of breathlessness

Most participants were able to describe their breathlessness experience when it started or acute episode occurred. The participants usually described their breathlessness when triggered (by simple activities such as walking a very short distance, climbing stairs or doing any work in their everyday life).

I actually do all the housework. Only when I do a lot at work, and also when I lift heavy things. When I use the vacuum cleaner, I get very short of breath, that’s all. I’m out of breath. I’m short of breath, that’s all. (Fulya)

This theme highlights the need to recognise various factors contributing to their breathlessness experiences under certain circumstances, ranging from broad to specific perspectives. This theme includes four subthemes: psychological vulnerability; physical vulnerability; interactions with other symptoms and living with uncertainty and fear of death/dying.

Psychological vulnerability

Emotional distress was one of the factors affecting the recognition and appraisal of breathlessness among this population. Participants who lost a friend/family member living with heart failure expressed sometimes their breathlessness degree based on their observation or inferences of their relatives/friends’ experiences. These observations or inferences affected the decision-making process of their symptoms and self-management strategies: (1) a refusal of their treatment options or not reporting their conditions and (2) developing different strategies and thoughts due to misinterpretation:

Look, our daughter-in-law’s father has had open heart surgery, and her mother is already dead after a heart surgery. His father has just had surgery. He came home for a few days, then when he went to the control, they took him back to the intensive care unit. … It is because of this fear that I do not undergo surgery. (Alin)

Also having more stressors (including family, job and other stressors) in daily life was one of the main factors to increase their breathlessness:

Yes, differences in daily life cause shortness of breath. For example, wearing a mask during the Covid period, work stress and heavy work, and difficult seizures cause shortness of breath. (Ayhan)

Physical vulnerability

Physical vulnerability due to heart failure causes people to report more breathlessness. In particular, advanced age and the presence of comorbidities were the main factors contributing to this type of vulnerability. Participants expressed that mutimorbidity increases the risk of having more breathlessness. While this caused much more physical decline, it also increased hospital admission:

Both in shortness of breath: The combination of high blood pressure (hypertension), diabetes and heart failure affect me a lot. When all three of them relapse at the same time, they affect me a lot. They [the doctors/nurses] administer oxygen right away. (Oya)

Interactions with other symptoms

Most participants reported that there is an interaction between breathlessness and other symptoms, with symptom clusters varying for each individual. Fatigue/Tiredness, sweating, sleep problems and anxiety were among the most commonly reported symptoms. In particular, sleep problems (difficulty sleeping and feeling drowsy during the day) were one of the most frequently reported impacts of breathlessness. Several participants reported feeling as though they might die while sleeping, which contributed to poor sleep quality. The combination of these symptoms with breathlessness significantly reduced their quality of life:

Shortness of breath starts when you get a little tired. Fatigue begins. So, the body becomes weak. There is already excessive sweating. When I sweat excessively, I can’t do anything. When you feel short of breath, fatigue turns into exhaustion. A swelling, especially in the area of the heart. I feel a swelling in the area where the pacemaker is. (Alp) (breathlessness-fatigue/tiredness-swelling-weakness)

Breathlessness-related distress was one of the main problems for participants. The description of the feeling of breathlessness was a stressful situation. A few participants described that when they had breathlessness, they experience more stress:

Shortness of breath is very stressful. My breathing rate increases, and I do not recognise myself. Where am I, what am I doing, I do not know. Significantly when I am stressed, my blood pressure rises, and my breathing becomes short. (Ela) (breathlessness-tachycardia-stress)

Living with uncertainty and fear of death/dying

Many participants expressed that they worried about ‘what will happen if they experience breathlessness’ or ‘when and how their breathlessness will start’. The uncertainty of when they experienced breathlessness or when it worsened created a feeling of being unable to participate in social activities or enjoy life:

Now you are constantly in trouble; you always have expectations and thoughts about what will happen. Nothing else happens.… Yes. Totally fearful. That is, you constantly ask yourself, ‘I wonder what will happen; will there be any treatment?’ (Mert)

Especially during the acute episodes, they describe the feeling of dying and losing themselves. These kinds of thoughts created more stress for the participants and make them uncomfortable mostly:

I immediately think of death. By Allah, when this happens, I immediately think of death. Such a sweat is coming. When I’m short of breath. (Asya)

Without focusing on the level/degree of breathlessness, some participants explained that some unwanted thoughts came to their minds very quickly when they experienced breathlessness. This increased their sense of death and stress levels:

When I feel shortness of breath, I feel like my heart is in my mouth. If at that moment the heart stops for a moment, I think the oxygen will not go to the brain. Here it will be, it will be like this. I mean, because we’re studying biology, there are times when these processes work like machines.… Possible scenarios occur in the minds. (Leyla)

Theme 3: cultural and religious consideration

The theme highlighted how Turkish people’s cultural and religious considerations contributed to the guidance of living and coping with breathlessness in heart failure. This main theme included the following subthemes: religious life distribution, belief in Allah (God) and intuition and complementary and alternative strategies.

Religious life distribution

Their religious needs such as praying five times a day, fasting and going to the mosque were interrupted in their lives because of breathlessness they experienced. Such distributions of religious life were expressed, especially by those who prioritise their religious life:

Now, in the meantime, the distance between the mosque and me was only 30–40 meters. I looked like I’m going to be late for prayer, so I started running. Now I have arrived there, but until the end of the prayer, my heart rate and shortness of breath affected and disturbed me a lot. And that situation continued for 2 hours. (Can)

Belief in Allah (God) and intuition

Belief in Allah and intuition was one of the personal resources that individuals used to help them to manage their fear/concern about death/dying or negative emotions:

Allah will protect you; nothing will happen. Ask my son why he is alive. He says he lives because he is religious. If you have your religion, Allah will take care of you. (Ali)

Some participants expressed that their previous experiences (heart attack and pulmonary oedema) had caused them to focus more on their beliefs and religious rituals. This is one of the coping mechanisms to accept the situation and feel more secure:

Now, thank Allah I passed that thing. I’m not that stressed. … So, I accepted this situation. But when I had a heart attack, this thing happened: now my faith in Allah has increased a little more. Now, before this, I couldn’t necessarily think like that. Now, even in the slightest trouble, the situation of going to the side of life is close. Inevitably, people do their prayers more. You take more care. It’s such things. I’m saying, thank Allah, I don’t have any problems in that respect. (Can)

Complementary and alternative strategies

Participants reported seeking an alternative way to reduce their shortness of breath by relaxing their bodies or destressing. The participants’ doctors and friends also suggested some alternative strategies for managing their breathlessness. They tried these suggestions and continued to use them according to their output:

Friends brought something for shortness of breath, but I did not see any benefit. I don’t know what they call it—a pinecone, they brought something like that. No, I did not see any benefit. No, the doctor told me to drink something … he said to make hawthorn leaf tea and drink a glass or two. I used to drink at first, but now I don’t. Maybe I’d better start back at it. I mean, it helps a little bit. (Eymen)

Theme 4: breathlessness self-management strategies/psychological

This theme was associated with how people manage their breathlessness psychologically. The theme included the following three subthemes: ‘self-affirmation’; ‘avoiding interacts with others’ and ‘engaging with hobbies’.

Self-affirmation

Participants used self-affirmation to help them overcome their negative thoughts and mitigate the effects of stress to get better. Particularly, the participants who thought they could manage their breathlessness by themselves expressed they could easily cope with it. This type of positive thinking increased their mood and motivation to deal with their breathlessness:

In other words, all my organs seem to be directly affected. So that’s how I feel. But let’s say when I experience something beautiful, my body feels everything – so it’s like I feel that thing down to all my cells. So, it seems to me. That is why I want to go on the path of affirmation. (Leyla)

Avoiding undesirable situations

Participants felt pressured by negative input or judgements from others, such as interactions that increased stress levels or receiving comments about their ability to relate to the condition. They were avoiding undesirable situations:

So now, when someone says something to you, your whole mood breaks down; you’re getting angry. That’s why it’s better [not going anywhere]. Something is said, I immediately get angry. (Peri)

Engaging with hobbies

Having hobbies like gardening helps participants get involved in life. These activities distract their attention from their illness and positively affect the way they look at themselves:

Now, for example, I work in the garden. Of course, I don’t work with a pickaxe. Because digging is uncomfortable when working with a shovel. But when I work with the waist shovel, it is good. Now I make a garden, I plant in the ground there, here I plant vegetables. Now, when I deal with these slowly, it doesn’t do anything to me. Then I feel better. (Can)

Theme 5: breathlessness self-management strategies/physical

This theme was associated with how people manage their breathlessness psychically at home. The theme included the following subthemes: ‘reliant on only their doctors’; ‘inputs from significant others’ and ‘maintaining normality’.

Reliant on only their doctors

Many participants stated that they only followed what their doctor said (including prescribed medications and slowing down and resting). This shows that they do not make their own decisions, such as adjusting the diuretic dose for their symptoms, while applying the treatment given by their doctor without questioning. They expressed that they only followed what their doctor said:

I take the medicines every doctor gives. … Whatever the doctor says. Now you prescribe it [medicine], I take it and use it, that’s all. (Oya)

Inputs from significant others

Input from significant others (including family members/friends) helped encourage their treatment and socialisation. In particular, the support of their family members (including their children, spouses and partners of their children) was important in managing their symptoms:

Without him [her husband], I can’t do anything. so, it is. I can’t do it by myself. …I’m out of breath.…My daughters help with my housework. They cook my food and help me with the cleaning. (Canan)

Maintaining normality

Maintaining normality was one of the core components for the participants, particularly in terms of the continuity of individual identity. People tried to continue their normal life as much as possible. Most participants have developed various strategies based on their physical limitations to continue their normal lives.

Preserving normality by doing things at a slower pace—avoiding activities: participants explained they would ‘slow down’ or ‘avoid activities’ to reduce the risk of feeling breathlessness. Almost all of the participants expressed they did their work slowly:

Secondly, I’m also doing something—while doing a job slowly, calmly, but I don’t want to do this quickly so that it ends. I do all my work slowly, because when I try to do it fast, then … shortness of breath begins, and I am affected. (Onur)

Another physical self-management strategy for maintaining normality was avoiding activities that triggered their breathlessness. Some participants explained that engaging in sports (like swimming, jogging, etc) triggered their breathlessness. They avoided this kind of activity in their daily life to reduce their breathlessness:

You can’t stay in the sea for long. The sea is a little tiring. When you are tired, you have shortness of breath. Then shortness of breath is also experiencing body fatigue. That’s why when I was last at the summer house, I couldn’t stay in the sea long. (Alp)

Adjusting new strategies to the new normal (based on their limitations): Some participants developed strategies to cope with their breathlessness and continue their daily lives, such as using additional pillows to reduce breathlessness while sleeping:

I can’t sleep on my back. I have to use two pillows. I even put it aside for a while, at least I get up and sit down. Sometimes I get up and pray at night. I sit for a while, and when morning comes, I say, ‘Thank Allah, it’s morning.’ It’s good when I get some sleep, but I can’t get enough sleep. (Alin)

Theme 6: improved health behaviours

This theme identified the needs of individuals to improve their health behaviours, as the current (routine) heart failure care in Türkiye does not adequately address them. Three subthemes were included in this main theme based on the participants’ suggestions and study findings: adequate education; psychological support and long-term management strategies.

Adequate education

Participants expressed a desire for more knowledge and awareness of heart failure and management strategies. Most participants reported that they had not received any information about their breathlessness, management strategies or the heart failure condition itself. To optimise their health and well-being, there is a need to raise awareness and information about heart failure and its symptoms among individuals with heart failure, their family members and the community. Participants describe their need for adequate training/education for heart failure:

If they say, ‘You better do this’, it would be better to enlighten us …. I think it is better to give such broad information. I think it would be better if they enlightened us, but as I said, none of them enlightened us. (Onur)

Psychological support

Most participants (both men and women, slightly younger) expressed a need for psychological support in heart failure, particularly at the time of their diagnosis. They emphasised the importance of psychological support for ensuring continuity and motivation in heart failure care in Türkiye:

I have shortness of breath. I think I should choose to participate in life instead of saying, ‘Yes, I have shortness of breath’, and sitting on the side-lines. So, it’s all in your head. So, psychology is the most important factor that affects everything.… As I said, it might be a little more psychological. … psychological support is very important. (Leyla)

A few participants expressed a need for psychological and family members support in heart failure. This highlighted the importance of the inclusion of their family members in their heart failure management strategies:

Emotionally, this dimension does not receive enough attention because health professionals work hard. Supporting family members is not enough. (Ayhan)

Long-term management strategies

Participants often described living with heart failure as something that lasts a lifetime rather than a very short time. They wanted to ensure their treatment (mostly related to the medications they were using) was done correctly. They emphasised the need for relevant and appropriate follow-up care in heart failure:

Because heart failure is not a disease that goes away quickly. So, it’s a process. … For example, I will do my best. So now it’s 50% but we’re going to look at the result of these drugs. I will see you in a year. According to it, we will decide whether to change our drugs or not. Could I explain? You know, my doctor and I should work together. I think heart disease is something like that. Because it’s not something that just goes away. This is something that is permanent. (Leyla)

Discussion

This study explored the full spectrum of symptoms and breathlessness, the impact and self-management strategies and the need for improved health behaviours among Turkish people with self-reported heart failure. There were a diverse range of symptoms. Individual reality of subjective breathlessness experience was affected by socio-cultural-behavioural factors in Türkiye, which has never been previously explored in the literature. According to the characteristics of situational-specific theory of heart failure self-care,¹³ this study highlighted individual’s symptom perception and management strategies affected by socio-cultural-behavioural context.

In our study, the importance of people’s cultural and religious considerations in heart failure became evident, as individuals reported disruptions in their religious life due to breathlessness. This is one of the aspects where healthcare providers do not fully focus on assessing or evaluating patients. This disruption underscores the correlation between religion, emotions and coping strategies, which is consistent with previous literature.35,38 Similarly, socio-cultural beliefs and values affect self-care and self-management.³⁹ This sometimes leads individuals to initially address symptoms with alternative and complementary strategies, potentially delaying reporting symptoms and health changes.^{40 41} Participants in our study expressed very realistic fear/concern about death/dying with the uncertainty of life due to the unpredictability of breathlessness and unplanned events after having breathlessness, consistent with previous studies.^{7 42} From a psychological standpoint, strategies like self-affirmation^{43 44} and engaging in hobbies⁴⁵ are vital for individuals with heart failure to cope with their symptoms, alongside social interactions3646,48 that aid in self-care management. However, negative feedback or judgements from others can exacerbate stress levels and undermine confidence in managing the condition. Maintaining normality is crucial for preserving identity and continuing life.737 49,52 Psychological support is essential for patients,⁵³ considering the stress, depressive symptoms and fears they may face. This support should extend to their families, who play a significant role in providing motivation.3754,56 Yet, caregivers often experience distress and burden,⁵⁷ requiring psychological support to better assist their loved ones with heart failure.

There were a variety of symptoms experienced by Turkish individuals with heart failure. Although this has been identified among different heart failure populations in previous research,58,60 it has rarely been discussed when considering symptom clustering in heart failure from an individual perspective. The interaction of an individual symptom (breathlessness) with other symptoms has been highlighted in this study. Breathlessness interacted with other symptoms such as fatigue, sleeping problems, sweating and stress, which varied among participants. When compared with the qualitative study carried out in the UK,⁷ there were both similarities and differences between our findings and theirs. While individuals reported similar breathlessness experiences, particularly in terms of its psychological and physical aspects, the management of breathlessness and religious considerations differed. Although in both studies individuals developed their own strategies to cope with their breathlessness, in our study the cultural and religious aspects were more evident. Cultural values and beliefs shape the understanding of symptoms, self-care and knowledge of heart failure.⁶¹ Person-centred symptom assessment and management within the heart failure population will be key to understanding cultural and social context of individuals.

Lack of knowledge/awareness and misconception are an obstacle to effective symptom assessment and self-care management in heart failure.^{50 54} Turkish individuals’ knowledge and awareness about their breathlessness (and heart failure condition) were poor, which is strongly associated with misinterpretation of their symptoms. This was particularly true for older individuals with limited education and little knowledge about symptom monitoring and management. Some participants also looked at an alternative way to get information such as internet and TV shows. Although educating patients and families about symptoms and self-care management is key to reducing symptom burden in heart failure, this has not been considered by healthcare policy makers in Türkiye. In this respect, there is need for specific nurse-led heart failure symptom assessment and management education interventions for patients and their families with an appropriate policy for heart failure specialist nurse. This will provide required long-term management strategies for them as well. Additionally, in this study, reliant on their doctors and prescribed medication is one of the subthemes of physical self-management, which address inadequate diuretic adjustment and diet management. In the study by Walthall et al,⁷ almost all participants reported a relationship between the degree of breathlessness and managing fluid/weight retention through the intake of an additional diuretic. Unfortunately, the participants in our study never mentioned this relationship, or monitoring their weight for fluid retention or extra diuretic use. These differences may occur due to healthcare system differences. This highlights the need for heart failure specialist nurses in Türkiye, who can provide adequate education on heart failure medication, symptom monitoring and management.

Heart failure created a greater psychological and physical vulnerability that increased the negative consequences associated with breathlessness from both life and health perspectives. Psychological vulnerability and loss of control due to physical vulnerability impact the preservation of self-identity.⁶² For example, decreased physical capacity is the one of most common negative impacts of heart failure, often accompanied by breathlessness and fatigue, which affect individuals’ daily activities.³⁵ The combination of vulnerability and low socio-economic status affected our study participants the most. Therefore, these vulnerable populations, such as advanced-aged individuals with multimorbidity and those experiencing socio-economic deprivation, require extra support and improved accessibility to healthcare.

There are limitations to this study that should be considered when interpreting the findings. First, this study included individuals with self-reported heart failure. Second, the participants were from the Southeastern Türkiye (one of the seven geographic regions). Individuals in other parts of Türkiye may have different experiences and self-management strategies due to differences in socio-cultural-behavioural context between these regions. In our study, the majority of participants had Turkish backgrounds. Nevertheless, the findings of the study did not represent the minority groups in Türkiye. Another aspect was the total sample size. Although we reached data saturation, more participants could have been added to show the heterogeneity of individual differences. Despite these limitations, this study was highly valuable to understand the individuals’ symptoms and unique breathlessness experiences and self-management strategies in the Turkish socio-cultural-behavioural context.

Increasing knowledge and awareness about breathlessness (and heart failure) is a core concept for improving individuals’ health behaviours in Türkiye. Without a good understanding of their heart failure, effective heart failure self-care (including recognition, reporting, monitoring and management of their symptoms) may not be possible. These findings highlighted the importance of the urgent need for nurse-led educational intervention (tailored by Turkish culture) and heart failure specialist nurses to support this target population. Education should be personalised through good communication skills and the development of individualised advanced care plans including specific recommendations to reduce each symptom (eg, breathlessness), which help to improve health outcomes. Various symptoms and uniqueness of breathlessness and its management from individual perspective highlighted a person-centred symptom assessment strategy (adapted to cultural or transcultural contexts) in heart failure. Further research is needed to explore differences in the full spectrum of symptoms within the social-cultural-behavioural context. Additionally, there is a need for further research to investigate the full spectrum of symptoms experienced by individuals with heart failure at different stages, including palliative and end-of-life care.

Conclusion

Breathlessness and its self-management strategies are affected by individual perspectives in relation to their socio-cultural-behavioural context. The knowledge and awareness of breathlessness (and heart failure) were poor, which is strongly associated with poor decision-making processes for self-management strategies including hospital admission or informing their healthcare providers. We highly recommend creating a person-centred symptom assessment strategy (adapted to cultural or transcultural contexts) guided by nurses. This approach may help to understand individuals’ unique symptoms profile and responses to their needs.

Data availability statement

Data are available on reasonable request.