STRENGTHS AND LIMITATIONS OF THIS STUDY

Qualitative interviews helped in extracting a helpful and in-depth understanding of lived experiences of the patients which will help the healthcare professionals and policy makers to implement a better system of healthcare treatment.

A different design and a larger sample size would be required to find a causal explanation. The current study was carried out within a Pakistani context, and therefore, follows the value, culture and norms of young and old Pakistanis. Cultures are different across the globe, especially in Western countries. The transferability of results may be affected by this.

Distance between participants and the research facility was also a limiting factor. Nearby participants may have been more likely to participate.

Introduction

The disease of deep vein thrombosis (DVT) is one of the most common causes of morbidity and mortality worldwide. Each year, 1 in 1000 people (6.5 million people worldwide) suffers from this disease.1 DVT incidence increases with age, doubling every decade with young people less likely to experience DVT.2 However, younger patients with DVT may experience psychological impairment with previous research indicating early age to be significantly associated with high anxiety levels and thrombosis complications.3 4 Likewise, similar studies highlighted a greater psychological impairment among younger patients with thrombosis than in older ones.5 6 Researchers consistently regard DVT as a negative experience that evokes strong emotional reactions with the diagnosis of DVT permanently altering the course of one’s life, with the fear of recurrence as an everlasting consequence.7–9 However, evidence exhibits that healthcare professionals (HCPs) do not provide the sufficient emotional support or information to the sufferers of DVT, which they need for their disease management.10

Any crisis related to health usually results in some form of emotional distress, anxiety, worry and intrusive ideas with life-threatening and traumatic events causing the most psychological distress and behaviour changes in daily lives.10 Literature exhibits that chronic disease in patients, such as cancer or diabetes, can result in long-term and severe psychological, emotional and behavioural problems which further contribute to worsening the prognosis of the disease.11 12 Likewise, patients with DVT experience multiple transitions at the same time, enhancing the risk of a disrupted sense of balance and well-being.13

A significant body of research has already been conducted on the physical implications of DVT, however, as per researchers’ knowledge very little is known about the psychological and emotional consequences associated with the disease, with none of the studies conducted specifically in the cultural context of Pakistan. Pakistan is a developing country with a high prevalence and severity of depression reported among patients with various chronic illnesses.12 Further, a high degree of stigma attached to the psychological problems in the cultural context of Pakistan may contribute in aggravating the situation. According to statistics, depressive symptoms are expected to be the most significant cause of disease burden by the year 203014 with sufferers of chronic ailments at an additional risk of 25%–33%.15

Given the limited knowledge about the psychological and emotional experiences of patients with DVT in Pakistan and the potential impact of these factors on disease prognosis, this study aims to explore the psychological and emotional effects of DVT on the daily lives of both young and older patients with DVT. The specific objectives of this study include the exploration and description of how DVT can impact patients’ daily lives and understanding of what it means to the patient to live with DVT. This study will help in shedding light and generating information on the issues faced by patients with DVT which, can be further used by HCPs and policy-makers to help them alleviate in future patients with similar demographics.

Materials and method

To report the findings of this study, Consolidated criteria for Reporting Qualitative research checklist was used.16 This qualitative study examined the lived experiences of sufferers of DVT from diverse backgrounds using a phenomenological approach. Using this approach, researchers were able to gain insight into the essential meaning of young and old patients’ lived experiences following DVT and, therefore, a deeper understanding of their long-term physical and psychological well-being.

Setting and participants

The present study was conducted in the three teaching hospitals of Lahore, Pakistan that is, Fatima Memorial Hospital, Jinnah Hospital and the University of the Lahore Medical Hospital. Patients of DVT were recruited from the outdoor patient department of the selected hospitals using a predefined inclusion and exclusion criteria through purposive sampling. Purposive sampling was used to recruit participants of a specific age range outlined in the inclusion criteria.

Inclusion and exclusion criteria

The inclusion criteria included the confirmation of DVT through Duplex ultrasonography reports, age range between 18 and 70 years, informed consent and the ability to comprehend and speak English, while the exclusion criteria included the declined consent. However, none of the persons asked to be included in the study declined. Author JS, a medical doctor, evaluated the Duplex ultrasonography reports of the participants for the confirmation of the disease, while the age was confirmed through the national identity cards of the patients.

Selection of participants

The authors contacted the physicians treating the patients with DVT and requested interviews with them. Patients’ information was distributed by a physician, and they were encouraged to consider participating in the study, while the physician had no role in the final selection of the participants. The authors then contacted all participants and requested them to participate in the study after introducing the study aims and objectives. Data saturation point was achieved after conducting seven interviews; however, two more interviews were conducted for ensuring the saturation point. A total of six participants with DVT in leg while three participants with DVT in arm were included in the study as the final sample (n=9).

Data collection process

An interview guide was used for data collection process that was developed after extensive literature review1 4 5 7–9 and was validated by four experts that were unrelated to the study. The developed interview guide was pilot tested on two participants and those interviews were not included in the final sample. The final interview guide had two sections: (1) sociodemographic profile and (2) formal interview questions. The sociodemographic characteristics recorded included age, age at diagnosis, gender, duration of DVT and profession. However, to maintain the participants’ anonymity, only age, gender and duration of DVT were provided as indirect identifiers. In formal interview questions, the interviewers inquired about the patient’s perceptions of DVT and how this chronic disease affects their personal lives. It also covered patients’ different experiences with the management of DVT. Open-ended questions followed by probing questions were asked during the interview, for example, ‘Please tell me about your life after you had a blood clot’. When needed, elaborating questions were asked (eg, ‘how you planned to cope with the situation?’). A fixed sequence of interview questions was not established, but prompts were given. Through an open, flexible approach, the authors were able to capture the perspectives of the participants rigorously while allowing them to freely talk about their life experiences related to DVT.

The interviews were conducted from January 2023 to March 2023. All the interviews were conducted at the settings convenient to participants in private meetings in the presence of just the participant; the interviewer and the field note-taker. Depending on the preference of the participants, interviews were conducted when participants were at home, on Skype or at the hospital premises, with the majority of the interviews conducted at the homes of the respondents, while three were conducted at the hospital premises and one was conducted online on Skype. Interviews were started with an informal session where the researchers and participants formed a rich relationship and built a sense of trustworthiness to explore the details of the story to gain a deeper understanding of it and to know how DVT impacts patients ‘daily lives. Prior to the process of data collection, the interviewers introduced themselves and the objectives of the study to the participants. This informal session with the participants helped to understand the complexities of DVT from the perspective of the participants17 and also helped in identifying the specific probing questions to be raised in formal interview session. To control the personal bias of the researchers, they kept a diary to themselves and restricted themselves purely to the objectives of the study. The interviews were audio recorded with the consent of the participants and lasted between 1 and 2 hours.

Data saturation was achieved by asking probing questions to capture patients’ feelings, emotions and understanding of their diseases and their outcomes to ensure depth of information, while the interview lengths were guided by the saturation process.18 The authors transcribed the recorded interviews verbatim immediately after they were conducted. The transcribed manuscripts were then returned to the participants for their feedback and comments and four repeat interviews were conducted to ensure the validity of the data.

Research team and reflexivity

All of the researchers, male and female, in this study, who were responsible for organising and conducting the interviews (AZameer, NY, RF and AZafar) were research professionals, holding doctorates or postgraduations in public health and medical sciences (Pharm.D, MBBS, Public Health and Sociology, etc), in addition to having prior relevant research-related work experience. Prior to the initiation of data collection process, a 2-day extensive training of all the researchers was conducted in which the principal investigator along with the supervisor briefed the team regarding the purpose, objectives and ethics of the study, followed by mock exercises for the conduction of formal data collection process.

Data analysis

The interpretive phenomenological method was used to analyse the data of this study and following the qualitative research approach, the transcripts were analysed using the complete steps guide of the interpretive phenomenological method offered (see figure 1).19 Phenomenological method is defined as the ‘study of the meaning of phenomena or the study of the particular’ and looks into the ‘lived experiences’ of the participants and aims to examine how and why participants behaved a certain way, from their perspective, within which lies its biggest advantage.20 Therefore, it is considered, as a well-suited methodology to comprehend participants’ subjective experiences. A four-stepped approach for the analytical process was used that includes (1) data collection through interviews, (2) careful transcription and translation of data so that the real meaning of the participants quotes is not lost, (3) categorisation of data into different codes to extract the embedded meanings from the data and (4) thematic coding of data to develop final themes (figure 1). Throughout the process, transcripts were read several times, for identifying codes and emerging themes. Throughout the entire process, transcriptions were continuously checked by all the authors, including those who collected data, to ensure that the participant’s experiences were effectively discussed in the emergent themes. The authors coded the data in collective meetings and the data saturation point and initial themes were discussed with all the authors and then after several meetings, the final themes were selected. The authors made sure to remain objective in their discussions keeping in view the emergent codes and themes. Further, the final themes were then also discussed with the participants to ensure that their feelings have been rightly illustrated in the findings and to ensure the consistency between data and findings.

Figure 1

Thematic analysis stepwise representation.

Patient and public involvement

Patients or the public were not involved in the design or conduct or reporting or dissemination plans of our research.

Results

The profile of the participants of the study is given in table 1.

Table 1

Participants’ profile

After multiple in-depth discussions and meetings with all of the authors following five themes were finalised as also shown in figure 2: experiences and challenges of managing pain and physical limitations in patients, the high out-of-pocket cost of care as a financial challenge to access healthcare, the struggle of patients with social isolation and lack of emotional support, resilience and self-reliance in the face of illness for navigation through life, inadequate healthcare system and challenges in accessing proper treatment.

Figure 2

Pictorial representation of merging of multiple categories into final themes. DVT, deep vein thrombosis.

Theme 1: Experiences and challenges of managing pain and physical limitations in patients with DVT

All participants felt intense pain and looked for relief as their pain was unbearable and was increasing day by day in the initial days of disease and it was a very stressful time of their life. Participants revealed that the most difficult experience for them had been the long-term pain, its intensity and the fear of harmful impacts of DVT on their daily lives. Many events related to the pain and stress were described by the participants. For instance, the first participant, P1, living with DVT for the last 15 years, diagnosed in his leg described that moment as though it occurred yesterday. He suffered from an ulcer due to DVT and recovered after a couple of months of extensive care. It was hard to work, study and get treatment for his ulcer at the same time but he handled it with a resilient attitude. He used his willpower and started living a normal life. But before reaching this stage, he went through a long painful and stressful period.

Yet another participant, P2, male, suffering from DVT in his leg for a year, shared that he stayed in the hospital during initial treatment and recalled those tough days of life-bearing intensive pain due to which he had to stop working which caused him extreme stress. He shared that, ‘time caused me mental stress as I was worried about my earnings and also the future of my condition’. One of the participants who was discharged from the hospital also remembered that recovery was not that difficult, but the tough time was during the stay at the hospital and bearing execrating pain. It was very difficult both physically and emotionally.

Another participant, P3, expressed that she still remembers the intensity of the pain when the doctor diagnosed her disease and how the pain did not let her sleep for several nights. She was pregnant with her second child when a doctor diagnosed this disease in her leg. The participant recalled that it was very tough for her to live with that pain without any support from in-laws which caused her extra stress and depression due to being alone in this fight. Some of the quotes of the participants are:

I started to feel pain in my right leg after my routine physical training. It was continuous and strange as usually the sports related pain is bearable, but this pain was something different, unbearable and killing me.

I was unable to make any plan and I was just looking forward to being able to stand up or walk again. I cried several times in front of many doctors to help me to get rid of this pain, after a while I started to visit the private hospital but it also went hopeless. It was the most stressful period of my entire life.

Recovery was not that difficult, but the tough time was during my stay at the hospital and bearing excruciating pain. He further added, I was unable to perform my duties due to pain. It increased at a steady rate to a point where only bed rest was possible so I had to skip work days that cost me so much.

I felt extreme pain in my leg and swelling whenever I used to do some physical activity. The fear of my future with this condition scared me and it was very stressful

I got DVT when I was pregnant with my first child and it was very painful. I had to do all my house chores alone and my condition made it very difficult and I would get really upset and depressed often because I was scared that I will never be able to recover from this

Theme 2: The high out-of-pocket cost of care as a financial challenge to access healthcare

The participants were in continuous fear of the future. Some of them did not want to get admitted to the hospital due to the high treatment cost which was out of pocket for the majority of participants but at the same time they were worried about the deteriorating condition of their health and the other financial demerits associated with it including the fear of losing jobs, managing finances and handling daily life expenses. The first participant was in continuous fear of the disease and also expressed worries regarding the deteriorating conditions of his leg caused by this disease. Due to this disease, his life was full of many difficulties, for example, managing finances, handling his daily life and lack of social and system support. Likewise, another participant informed that he was the only one to earn for his whole family, although he had been using ‘Sehat Sahulat Card’ (a government health coverage facility that bears the medical expenses for treatment in the hospital), however, the major issue was with long-term clot-preventing medicines which are to be used now for a long time. In addition to this, he also highlighted the worries related to his family’s daily living expenses. Yet another participant, P3, suffering from DVT in the leg for the last 16 years, was frightened due to the lack of financial and social support from her husband and in-laws as well as for her duties as a wife at the same time. The fourth participant, P4, suffering from DVT in his arm for the last 2 years, mentioned that his father was managing all of the expenses which were very difficult as he was employed in a private firm with an average salary. Some of the quotes of participants extracted from the interviews pertaining to financial challenges are:

I decided to go to the hospital but was afraid that it would cost a lot to my family. Our financial condition was not allowing me to create any trouble on the other side my leg was becoming weaker.

I was really worried after listening to my diagnosis of DVT because I could lose my job. My only support system was my close family and my connection to Almighty that made me emotionally stable.

My father arranges medicines and compression stockings for me, I am unable to bear my treatment’s cost.

In addition to this, participants also shared the worries related to the financial burden associated with the cost of managing the disease itself and its various outcomes, as one of the participants added, ‘I feel that DVT is a high-cost disease because its outcomes are very dangerous like pulmonary embolism or leg ulcers all require a heavy budget and time for the cure.’

Theme 3: The struggle of patients with social isolation and lack of emotional support

During the trauma, social support is very meaningful but the study participants revealed that they have received a little support from their friends and relatives, while only immediate family supported them. The participants shared that they tried hard to manage the situation in this critical time, and never lost hope by giving up however, the lack of support from their closed ones make them question their identity and pushes them into a state of isolation. Almost all of the participants shared that they had been a victim of lack of emotional support and to the cruel remarks of their friends and relatives, pertaining to their disease and health, which created an emotional trauma for them. Some of the comments from the friends and relatives of the patients of DVT are given, to have an insight about how the sufferers of DVT might have felt:

Why do you always wear socks on your leg, why do you not walk properly, asked by relative?

You would not play any sports again, so you should just stop calling your friends.

You will not be able to do any physical work again.

Why are you nervous all the time? No fun or joy with friends and relatives?

Oh my God, your feet look so dark.

In addition to the direct comments of the relatives and friends, participants also highlighted that the behaviour of their friends, relatives and the overall structure contributed in creating a disturbing experience for them, hence pushing them into a state of social isolation. Different quotes of participants illustrating their different experiences causing the feeling of social isolation are:

I was out of my sports team and my college, and spent maximum time in my bed, it was a challenging time for me. My education and sports friends all started to leave me.

"Neither financial nor emotional support was provided by my friends. They only visited once or twice during my long stay in the hospital.

Lack of social support and feelings of loneliness likely made me more vulnerable to mental problems like depression.

I was stressed most of the time because of my house responsibilities and no cooperation from my in-laws and little attention from the physicians.

Theme 4: Resilience and self-reliance in the face of illness for navigation through life

The participants revealed that, with the passage of the time, they started to adapt to their disease and started living with it. Some of the participants took the lack of social support to increase their inner strength. As P1 shared that his journey of illness and circumstances changed his orientation towards life as he became more serious about his health and career. He further shared that he used his same strength and started living a normal life. It was relaxing when he accepted the reality of his health. Yet, P3 responded in this regard that her husband and in-laws were busy with their life when she was struggling with her leg. She only discussed with her mother when she visited her frequently and supported her during pregnancy. So, she fought this battle of pain alone mostly. Almost all of the study participants expressed that they had to become strong to survive this condition. Their self-confidence and resilience made their life a little better as they stopped expecting others to take care of them.

I started studying privately and passed my bachelor’s exams. I failed twice in one subject but 3rd time I passed. In 2010 I started my master’s program as it was the time of digital media and things were changing in the modern world. I started studying again and became serious in my student life. In 2017 I got ulcers again and my condition was so bad. But I recovered after a couple of months.

It was hard to work, study, and get treatment at the same time. This year I got more traumatized when I lost my father. After a while, I just adopted my sickness and started living with it. It was relaxing when I accepted the reality of my health. I was not resting or taking care of my health in those days. I was just trying to fill the gap which was built by society or family in my life.

I was struggling with my disease alone as both of my kids were young, and I was head of the family and my family was dependent on me. I returned to my job as soon as I was discharged from the hospital so that I could start earning for my family

I felt that everyone was slowly getting away from me. They stopped paying extra attention. I realized then it’s on me now. I have to be strong because I am the one who had to live with this. I learned to take care of myself on my own

It was difficult in start but with time I learned to manage it and now it’s a normal part of my life

Theme 5: Inadequate healthcare system and challenges in accessing proper treatment

In developing countries, system-related challenges are frequent and prominent. In this study, the government hospital system, late diagnosis and fake medication played an important part. One of the participants, P1, faced many hardships to get into healthcare systems when he suffered from an ulcer. Another participant, P2, also faced difficulty with the management of the organisation where he was working as they failed to understand his disease. All of the participants expressed that they were not at all satisfied with the management of the administration of hospitals. According to them, the healthcare staff was not attentive to their needs including the physicians who gave them very little attention. Some participants also expressed mistrust of the administration of government hospitals.

Life was easy and smooth at that time, but after initial treatment I got DVT again in my left leg, but this time due to fake medication. I was using a blood thinner, but it was fake. It took 3 months to diagnose my issue and two years to get into a hospital, but I had no option

The management at the hospital was not polite and did not understand the nature of the disease or precautions that I must take now.

The Pakistani healthcare system is expensive, complicated, dysfunctional, and broken. The system needs a major overhaul.

There was no help from the government or hospitals. All they care about is timely payment. They don't care about the patient’s condition. Our hospital management system is very disappointing.

We needed a regular supply of a particular injection during my pregnancy when I was diagnosed with DVT and I am fully sure that the hospital had access to that injection but they did not provide it to us and we had to comb through the pharmacies of the city to acquire it every month.

Discussion

The interpretive phenomenological approach was employed in this qualitative study to examine the life experiences of patients of DVT. This technique was selected as it posits that lived understandings can be known through inspection and understanding of meanings that individuals give to them.19 20 Given the circumstances; it is well suited to comprehend participant’s individual experiences of daily lives. The findings of the present study extend previous research findings by demonstrating that DVT is a ‘chronic disease that requires long-term treatment for life till death’.21 The present study found the most commonly experienced manifestations by study participants were pain in the legs, restricted physical activity, problems with walking, the fear of developing ulcer and pulmonary embolism and the cost associated with it.22 In addition to this, the financial burden was reported as a main issue for the management of DVT in all age groups and research participants discussed that DVT itself is an expensive disease and its impacts are also adverse and harmful that resonated with the findings of the previous study.23 A study conducted by Li et al 24 concluded that DVT may have an extra financial burden for patients and their family members, who need to adjust the expense of acquiring medicinal services against contending money needs, that is, also supported by the findings of the present study. DVT and its subsequent inabilities can prompt troubles in working or looking for a business. Moreover, the long-run care and high expense of medications affect family expenses, which may result in poverty.24

Furthermore, participants included in this study emphasised on the significant role of the family and friends for building emotional support and supportive environment. Likewise, previous findings revealed that family adjustment may play a significant role in the adjustment of not only old but also young patients when adapting to DVT.9 Our study further provides insights that a lack of emotional support from the close ones may cause a negative effect on the overall health status and life of sufferers of DVT by creating a sense of social isolation and loneliness. Previous similar studies highlighted the feelings of being unusual among the sufferers of DVT that are further linked to the sense of being lonely.25 The need to feel connected to and maintain relationships with friends and family is a common pattern of reaction during a healthy illness transition. Evidence shows that socialising with other people who have had DVTs may be essential for promoting mental health as it creates a sense of belongingness.26

However, the findings of the present study further elaborate that the lack of social and emotional support from friends and family may help in developing self-resilience in the face of illness for navigating through life in younger patients of DVT, where the patients stopped attaching expectations and relied on their selves for adapting to their health conditions. In addition to the impact of lack of social support from the friends and family on the mental health of patients, the findings of the present study also give insight that the mental health of sufferers of DVT is also impact by the dread of DVT recurrence. Additionally, we discovered that the worry of recurrence retained over time, which confirms the findings of the other studies that suggest the psychological consequences of DVT have a chronic time course.9 Patients with DVT experience delays in diagnosis, and there is evidence to suggest that this number is larger in the younger population due to a lower expectancy of DVT occurrence.6 According to our findings, delay in diagnosis led to a loss of confidence in HCPs.27 The current study found that the symptoms suggesting DVT recurrence restricted the perception of control. Participants in these situations relied on HCPs, their findings indicated that healthcare services were overused to recognise recurrences of DVT.

DVT also imposes many restrictions on lifestyle. Participants experienced restrictions due to blood thinner injection or oral medicine, limited physical activity and blood INR level fluctuations. It is evident from previous studies that after behavioural change participants developed awareness and a positive attitude to manage DVT.10 They developed awareness to cope with disease and manage by adjustment. Findings also showed the significance of family support in acceptance behaviour to disease and DVT management.25 Unusual care by spouses and children was evident particularly in old age and self-management in early age studies.28 Overall, the findings of the present study provide useful insight regarding the lived experiences and challenges faced by the sufferers of DVT, however, the present study has been conducted purely in the cultural context of Pakistan, where a high degree of stigma is attached to almost all diseases, causing a delay in diagnosis, treatment and rehabilitative services.29 The dependency of the results of the present study on the sociocultural context of Pakistan may reduce the transferability and dependability of the findings of the present study to other cultural contexts, that is one of the main limitations of the present study. Further, the present study does not distinguish between the experiences of male and female sufferers of the DVT and is conducted on a relatively smaller scale. Therefore, further studies, with varying cultural boundaries, having a larger sample size, with a comparison between males and females, are needed to explore the various experiences of DVT sufferers.

Implications for research and practice

Current research provides the clinical indication that psychological well-being is vitally important when developing rehabilitation programmes for older and younger adults with DVT. Life after DVT was marked by feelings of isolation and being different.8 By modifying this outlook, peer support may be helpful in reducing psychological suffering. To find the most appropriate kind of peer assistance, more investigation is necessary. The responses of the family, especially the parents, are vital for the mental health of the patients as they greatly influence how both young and senior patients see their condition and adjust to DVT. Our results suggest that symptom management ambiguity may result in excessive use of healthcare services.9 This study’s focus was not on the subsequent healthcare use among individuals with DVT or on a delay in diagnosis assessment and quantification; a larger study examining these topics would be pertinent.

Conclusion

Conclusively, chronic disease such as, DVT, negatively impacts the life of its sufferers in terms of their physical health, lifestyle and psychological behaviour. Among the main factors contributing to emotional burden among the sufferers of DVT, the foremost is a lack of social support from their peer group and the burden of financial cost, with the recurrence of the disease as the most potential fear. The study highlights the importance of family support, self-strength and doctor’s counselling as a way for altering the behaviours and lifestyle of patients with DVT that plays a part in promoting self-management among patients. Therefore, there is a high need to introduce rehabilitative services as a regular part of healthcare management system of Pakistan, especially for the patients suffering from chronic illness, so that self-management strategies are promoted and adopted by patients and the burden of long-term psychological, emotional and behaviour problems can be avoided.

Data availability statement

Data are available on reasonable request.

Ethics statementsPatient consent for publication

Not applicable.

Ethics approval

This study was approved by the Departmental Doctoral Program Committee (DDPC) Institute of Social and Cultural Studies, Letter No: D/119/ISCS University of the Punjab, Lahore. The study was also carried out according to the recommendations of the British Association for Educational Research guidelines. All participants were fully informed and briefed on the purpose of the study. Oral consent was obtained by the participants before data collection. Verbal consent instead of written consent was taken because no interventions were administered in the present study and there were potentially no harms associated with the participation in the study given the anonymity of the participants is maintained. The pseudonymity of all participants was maintained through the use of an alphanumeric coding system (ie, P1, P2) and the deletion of all identifiable data from the transcripts.

Acknowledgments

Profound gratitude to participants for their permission and co-operation in collecting data from them.