The meaning of coping for kidney transplant recipients: a phenomenological study

Abstract

Background

The meaning of coping, which can be affected by the nature and type of stress and by individuals’ background and culture, has not been studied in the context of specific stress conditions, such as kidney transplant.

Aims

The present study aims to explore the meaning of coping for kidney transplant recipients.

Methods

Purposeful sampling was employed for this hermeneutic phenomenological study. Participants were nine kidney transplant recipients who had received treatment at specialised hospital centres in Mashhad and Ahwaz, Iran, in 2013. Data were collected from unstructured interviews and analysed using Van Manen’s approach.

Results

From 10 sub-themes emerged 4 major themes characterising the meaning of coping with renal transplantation: intelligent acceptance of changes, understanding the necessity of self-care, enduring, and understanding supportive encouragement.

Conclusions

The meaning of coping for kidney transplant recipients in Iran encompasses a wide range of cognitive, behavioural, psychological, spiritual and social dimensions. Relying on God’s eternal power and on imams emerged as major dimensions of the meaning of coping.

Introduction

Kidney transplant is among the most important treatment methods in Iran for patients with end-stage renal disease. Annually, 1800–1900 patients receive a kidney transplant in Iran (Einollahi et al., 2012; Ghods, 2014). Despite this treatment’s importance in promoting quality of life for transplant recipients, many studies have found associations with problems including physical, psychological and social stresses that can affect patients’ understanding of coping and treatment results (Baraz et al., 2014; Chen and Tang, 2005; Gill, 2012; Valizadeh Zare et al., 2015).

Transplant is an exclusive experience incomparable with any other medical condition (Finkelman and Kenner, 2010). Due to the constant stress of transplant rejection, living with a transplant as a chronic disease entails more sensitive and critical situations than other chronic diseases such as cancer (Keil, 2004). As an important concept in managing stressful conditions, coping can be affected by different stressful conditions, and this concept can have different understandings and inferences. Understanding coping conditions, in particular stressful conditions, is one of the most significant things that healthcare providers such as nurses need for performing care services (DeLongis and Holtzman, 2005; Folkman and Moskowitz, 2004). Despite various studies and the wide application of this concept in nursing, there are five major problems regarding the meaning of the meaning of coping: (a) its meaning is not clarified in particular stress conditions; (b) the understanding of coping is not fixed but relative, changing and dynamic; (c) coping characteristics are under the influence of stressful conditions; (d) conceptualisations just take the general meaning into consideration; (e) coping is an abstract and complicated structure that is context centred (Denny and Kienhuis, 2011; Folkman et al., 1986; Parker and Endler, 1992).

Coping is a complicated concept that requires the cooperation of some systems to be balanced, and it can be affected by the type and nature of the disease and stress, and the individual’s background and culture (Pfeifer et al., 2013). In fact, one of the most important reasons for the different aspects of the formation of the meaning of coping is the nature of the stress, which is to be seen in the crisis theory of Lazarus and Folkman (1984; Tayebi and Abedi, 2009). In order to study this, the difference in aspects of a concept is evident from one sample to another or from one stress to another (Farsi et al., 2012). A qualitative approach is appropriate to clarify the understanding of this ambiguous human experience (Polit and Beck, 2012). Given the lack of clarity and research on the meaning of coping in specific stress conditions such as kidney transplant, this study is aimed at exploring the meaning of coping in stressful situations such as kidney transplantation.

Defined by Lazarus and Folkman as ‘cognitive and behavioural strategies people use to manage internal and/or external demands in stressful encounters’, coping can be affected by different stressful conditions (Folkman et al., 1986, p.993). Therefore, in order to provide good care, it is important that nurses understand the meaning of coping in stressful situations such as transplantation (Finkelman and Kenner, 2010; Keil, 2004).

Despite extensive research and the application of this concept in nursing, the importance of which is emphasised by the North American Nursing Diagnosis Association (NANDA) nursing diagnosis (Rosalinda, 2013), we can identify five major related issues and gaps in understanding the meaning of coping: (a) coping characteristics are influenced by stressful conditions; (b) coping has not been explicitly studied in specific stress conditions; (c) coping is relative, changing and dynamic; (d) the common definition of coping (Lazarus and Folkman) reflects only a general meaning of this concept; (e) coping is an abstract, complicated, context-centred concept (Chen and Tang, 2005; DeLongis and Holtzman, 2005; Folkman et al., 1986).

As Parker and Endler (1992) pointed out, the nature of stress is one of the most important sources of the different dimensions of the meaning of coping. Understandings of the meaning of coping can change under different stressful conditions (Parker and Endler, 1992). A qualitative approach is appropriate to clarify understanding of this ambiguous human experience (Polit and Beck, 2012). Given the lack of clarity and research on the meaning of coping in specific stress conditions such as kidney transplantation, this study is aimed at exploring the meaning of coping in stressful situations such as kidney transplantation.

Methods

Design

In this qualitative study, the Van Manen interpretive phenomenology method was employed. Van Manen believes that hermeneutic phenomenology offers a systematic approach to study and interpret a phenomenon and allows the phenomenon to be analysed and understood from an interpretive perspective (Van Manen, 2007). This approach enables a deeper understanding of life experiences to be acquired during the interpretive process.

Study setting

The research sites were the kidney transplant centres at two specialised hospitals in Iran, Montaserieh and Golestan in Mashhad and Ahvaz, respectively, which are the two most important centres for organ transplant in these cities. Kidney transplant recipients attend them for follow-up visits and laboratory tests, which aided in the recruitment of informed participants.

Participants

Using purposeful sampling, researchers recruited participants from the lists of kidney transplantation recipients at the Mashhad and Ahvaz transplant centres. Inclusion criteria were having experience of kidney transplant, being aged 18 years or older, having the ability to speak Persian, having had no experience of transplant rejection, and a time lapse of at least 6 months since receiving the transplant (minimum of 6 months of coping with a new condition) (Kamran, 2014). Patients who had experienced rejection of the transplant or a time lapse of less than 6 months since transplantation were excluded. Eligible patients on the transplant list were contacted by telephone and, after the purpose of the study was explained, were asked to meet with the researcher at a time and place convenient for them. At the time of the interviews, all participants were in good health and had not experienced any complications.

The sampling process continued until saturation was achieved. No new codes were found after interview 6, but we continued interviews with three additional subjects to provide a more vigorous description of the phenomena (Polit and Beck, 2012). In this regard, 11 face-to-face interviews were conducted with 9 transplant recipients (some participants were interviewed more than once). Two of the participants received deceased donor transplants; the others received live donor transplants. See Table 1 for additional descriptive characteristics.

Table 1.

Demographic characteristics of the nine participants.

Characteristic	No. (%) of participants
Sex
Male	4 (44)
Female	5 (56)
Age, years
Median (range)	33 (27–62)
Marital status
Single	4 (44)
Married	5 (56)
Duration of transplant (months)
Median (range)	24 (10–120)

Ethical considerations

This study was approved by the ethics committee of Jundishapur Medical Sciences University in Ahvaz. The lead author explained the purpose of the study to participants, who completed informed consent and permission forms for data collection. To preserve anonymity, participants were assigned numerical labels, which are used in this report, instead of their names. Participants were permitted to withdraw from the study at any point.

Data collection method

All stages of the study were conducted with guidance from the six steps of Van Manen’s analysis method (Van Manen, 2007). In the first step, focusing on the phenomenon of adaptation with kidney transplantation leads to the formation of the main research question: What is the meaning of the phenomenon of compliance with the kidney transplantation? In the second step, the exploration of adaptation to the transplanted kidney as experienced by the participants leads to a semi-structured interview with participants.

Interviewing the participants was carried out at their home or at the workplace. The interview was started with general questions including ‘What did you encounter when you needed to kidney transplant?' and ‘How did you feel after your transplant?’. In the third stage, after interviewing, the researcher immediately tried to record interviews verbatim and coded them so that any need for further interviewing as well as the necessity of any changes would be identified. After recording the interviews for the analysis, the text of the interviews was entered into the software MAXQ data version 10. It is noteworthy that during the interview, the researcher considered and used non-verbal data such as facial expressions, tones, artefacts and events related to the kidney transplant adaptation. The interviews lasted 60–167 minutes. Using the Van Manen analysis approach, a ‘holistic and line-to-line approach’ was performed to immerse data and extract meaningful units. In this step, first using the line-to-line approach, the interviews were read. Keywords associated with the research question were extracted and encoded. This phase resulted in the extraction of 678 codes. Primary codes were classified based on their similarity to 26 cluster themes. Subsequently, 10 subthemes were extracted by considering cluster themes.

Based on the collaborative interpretation technique, the main research theme was subjected to sub-themes by the research team. A holistic approach was used at the end of the analysis to validate the discursive approach and to extract the themes, so that each of the interviews was considered as a whole and descriptive phrases were written. Accordingly, nine descriptive phrases were extracted. Then these coding phrases were categorised and compared with extracted content. Step 4 of the analysis is the writing of the phenomenological text within which the results are brought together in a professional and scientific language that is understandable to others. The fifth stage of Van Manen's analysis is to maintain a relationship with the phenomenon under investigation, adaptation, throughout the research process. In the sixth step, the researcher focused attention on the reciprocal movement of components and the whole text according to the research question.

Trustworthiness

To ensure trustworthiness, we used Lincoln and Guba’s criteria (Polit and Beck, 2012). We communicated with participants in a friendly manner so that, despite the time commitment, they saw the interviews as an opportunity to express the unshared aspects and outcomes of living with transplantation. This was done to gain the trust of the participants and increase the credibility of the data. Participants checked the interview transcripts and incidental themes and confirmed that they represented their experiences. In order to perform collaborative thematic reflection, the research team members frequently discussed and shared all the incidental and cluster themes to identify subthemes and major themes. This process led to changing and replacing some minor and cluster themes and modifying the formulation of the major themes. In addition, the researcher carefully chose samples with maximum variance (such as age, sex, education level, duration of transplant and dialysis, and living and cadaver donors).

Results

Analysis of the findings revealed four major themes in the meaning of coping with kidney transplant: intelligent acceptance of changes, understanding the necessity of self-care, enduring, and understanding supportive encouragement (Table 2).

Table 2.

Essential themes and subthemes.

Main themes	Subthemes
Intelligent acceptance of changes	Accepting their changed health
	Accepting the realities of transplantation
Understanding the necessity of self-care	Concentrating on self-care behaviours
	Changing and improving lifestyle
Enduring	Conscious tolerance of difficulties
	Spiritual tolerance
Understanding supportive encouragement	Understanding the support of family
	The presence and companionship of healthcare providers
	Feeling of support from friends with similar conditions
	Understanding supportive organisations’ encouragement

Intelligent acceptance of changes

Participants perceived intelligent acceptance of changes as a crucial aspect of their understanding of the meaning of coping. They viewed coping as accepting all the lifelong changes of transplantation based on reasonable, logical knowledge of them. This theme emerged from two subthemes: accepting changed health and accepting the realities of transplantation.

Given their present health condition and continuing dependence on medications, patients pointed to the importance of medication to their health:

Now it’s good for me to continue medication until the end of my life. If we don’t medicate, we’ll die. (P2)

Participants asserted that their present situation makes them different from healthy people and from how they were before the disease, and the understanding of this difference makes following care behaviour acceptable to them. Participant 2, a 28-year-old woman, stated:

Because I know I’m sick and my condition differs from before my illness, I cannot expect to marry a good, healthy man.

Participant 5, a male driver, stated:

I have to accept that I’m not the person I used to be. We’re like men made of porcelain that broke down and then are tinkered with. If we don’t care for ourselves, this porcelain will get broken again.

Participants understood that their lives depend heavily on accepting realities, such as the continuation of problems that occur after transplantation. Participants expressed that they felt that transplantation frees them from dialysis, but that this freedom does not mean an absence of all problems or the ability to continue life without them. A 40-year-old woman who had undergone dialysis for 40 months stated:

The environment of the hospital and diagnosis laboratory is difficult to bear, but I will accept this problem till I die. (P3)

Understanding the necessity of self-care

Another important aspect of the meaning of coping is understanding the necessity for self-care. In interviews, it became clear that participants viewed two ways of paying attention to care necessities as key to living freely with transplantation and accepting its problems: concentrating on self-care behaviours and changing and improving one’s lifestyle.

Participants accepted and adhered to the difficult care systems assigned to them in order to preserve the transplanted kidney. They felt that, by following this care system, they could preserve their kidney and have a long, healthy life. While understanding and perceiving health condition changes, participants identified such necessary, care-preserving behaviours as paying attention to the necessity of medication, preserving medical advice, and what one must not do. In this definition of caring, they learn what behaviours to prevent and to preserve in order to remain healthy.

A male participant who had an elapse of 17 months since transplantation stated:

We have to medicate. Some people think one has to medicate 3 or 4 years and then can stop it. One stopped medication after 3 or 4 years, and his transplantation was rejected. (P4)

Participants focused heavily on the sensitivity of medication as a self-protecting behaviour. For example, during an interview, participant 6 screamed, stood up, and rushed to her purse. When asked why, she explained that she had forgotten to medicate. The delay in medication had made her agitated.

Participants recognised that correcting and improving their lifestyle is necessary to sustain and promote their health. Focusing on lifestyle improvement as a characteristic of coping, participants preferred simple and homemade foods over fast foods without a transparent production process:

I never eat at restaurants; especially fast food such as sandwiches because I know nothing about how they’re cooked. I eat cheese, bread, and nuts. (P4)

Understanding what activities are harmful to health after transplantation prompted participants to abandon those activities and replace them with other activities that do not threaten the health of the kidney:

I changed my place of work because I used to repair gas-burner devices. I said I’d not go there anymore because it might hurt my kidney, so they allocated a room to me. (P8)

Enduring

A major theme structuring the meaning of coping was enduring. Participants understood that patience and toleration of difficulties resulting from transplantation are key to success. To patients, enduring has two characteristics: conscious tolerance of difficulties and spiritual tolerance.

Participants were consciously aware that, if they are patient with the difficulties resulting from the present changes in their condition, they can achieve a calm life without the gruelling experience of dialysis:

In order not to suffer any pain, I tolerated the difficulties after transplantation. I can’t eat everything. I have to wear masks when I go out. I can’t drive in smoky and crowded streets. (P7)

In constructing the meaning of coping, a merciful God and his blessings played pivotal roles. Relying on this omnipotent power gave patients a calmness and lack of fear of the difficulties resulting from condition changes. Trusting in this power enabled them more easily to follow this path. They said that ‘seeking help and relying on God results in tolerating a difficult condition’:

After transplantation, my relationship with God increased. I felt closer to Him because it was He who healed me. That’s why I asked Him to help me tolerate these conditions. (P9)

Understanding supportive encouragement

Pivotal to creating the meaning of coping is understanding and tapping into different support channels, such as family, healthcare providers (especially doctors), patients experiencing similar suffering, and organisations such as the Transplant Association, which assists transplant patients.

Participants reported that feeling understanding and support from family is key to coping:

My family cares greatly about me. If I forget to medicate, they remind me. It’s really important for me not to forget to medicate. (P8)

The presence and companionship of healthcare providers, especially doctors, encouraged participants:

God bless Dr. … Whenever I have a question – at noon or midnight – she answers. She has my number and answers my phone calls. She asks to know what has happened. She truly cares about me. (P2)

Talking with and receiving support from friends with transplants also aids with coping:

When I come across with a problem – for example, my urine becomes too little – I immediately call my transplanted friend. He kindly advises me. That’s why it’s good for me to be in touch with such friends. We completely support each other. For example, if one of us runs out of drugs, the other friends provide it for him. We have no worry about running out of drugs. (P7)

Organisations also supply essential, supportive encouragement:

God bless the Transplant Association. When I go there, they accept some of the expenses and give me some financial supports. (P7)

Discussion

The findings show that coping with kidney transplant involves conscious, purposeful, simultaneous attention to different dimensions, particularly intelligent acceptance of changes, understanding the necessity of self-care, enduring, and understanding supportive encouragement. Coping, thus, is an activity involving the cognitive, behavioural, mental, spiritual and social aspects of individuals.

The most widely cited definition of coping is behavioural and cognitive effort, for managing internal and external needs places too much stress on the behavioural and cognitive aspects of responding to all the needs of individuals facing stress (Folkman et al., 1986). The four themes or definitive characteristics of coping identified in this study mark not only cognitive and behavioural responses, but also emotional, spiritual and social responses to internal and external needs. Lazarus and Folkman’s definition does not adequately distinguish among these types of coping. The present study attempts to answer the question of which kinds of cognitive and behavioural efforts in which transplant patients, particularly kidney transplant patients, based on their own experience for adaptation.

Compared to Kaplan and Lindeman’s crisis theory, which focuses on the mental–spiritual aspect of coping (Denny and Kienhuis, 2011), the present study is not restricted to these elements. The definition offered by this study covers more aspects of coping and is broader, clearer, and more comprehensive and transparent in terms of indicators and features.

Regarding the different dimensions of coping stressed in these definitions, it must be noted that diseases confront patients with different challenges which change their understanding of coping with new conditions. From the studies conducted by Tayebi on liver transplant, Peyrovi on heart transplant and Farsi on bone marrow transplant (Peyrovi et al., 2014; Farsi et al., 2012 with Tayebi and Abedi, 2009), it can be inferred that, in all kinds of transplantation, the majority of recipients fear rejection. However, the effect of this fear on transplant recipients varies because of the nature of stress during the different transplantation processes and outcomes. Recipients of liver and heart transplantation regard rejection as life-threatening and as a return to a difficult, potentially fatal wait for a living donor. However, in renal transplantation, rejection results in the stress of the return to difficult treatment. That said, compared to other organ transplantations, access to kidneys for transplantation is easier because they can be received from both living and deceased donors (Farsi et al., 2012).

Even with the same treatment method, cultural values can result in different patient responses. In a study on the most stressful factor of renal transplant in two different cultures, Achille et al. (2004) found that among Canadian patients (47 participants), the most stressful factor was fear for future health; however, in Frazer’s study, it was financial problems (Achille et al., 2004). Differences in stress can stem from the culture of a society’s care system. In some societies the patient must pay all treatment expenses, which increases stress. In a care system in which the patient does not pay all or part of the expenses, the patient’s stress tends to shift from the monetary aspect of the treatment to future health and fear of the disease outcomes. In the present study, patients paid the treatment expenses themselves and viewed understanding the financial support system as one aspect of the meaning of coping.

Religious beliefs are also crucial to understanding cultural differences in coping. Various studies on religious beliefs have confirmed that different cultures rely on belief in supernatural powers to handle stressful conditions (Krägeloh, 2011). From the Islamic perspective, the concept of spirituality supports that of religion, and spirituality cannot exist without religious thought and practices (Hatamipour et al., 2015). A strong trust in the infinite power of God at work in the events of life leads to reliance on God in all the hardships. The vast majority of the Iranian population is Muslim (Ebadi et al., 2009), and Islamic culture has greatly influenced Iranian society, so it is not surprising that the theme of spiritual reliance on God’s eternal power emerged as an aspect of the meaning of coping.

The supportive dimension of the special role of the family is also highlighted as an aspect of coping in the present study because focus on the family has been emphasised in Islamic countries. One of the dominant aspects of Iranian culture is devotion to family, which is the individual’s first priority. Family in Iran is considered as the primary support system for individuals in times of crisis (Rambod and Rafii, 2010). The generalisation and application of the results from this study are limited to the background and culture of Iran.

Conclusions

The results show that coping with the stress of renal transplant, which has a different nature from other forms of stress, can be defined as intelligent understanding and acceptance of changes, care efforts such as performing effective health behaviours, bearing of difficulties by consciously relying on spirituality, and supportive encouragement to sustain and promote a new life. Participants’ meaning of coping shows that living with kidney transplant entails living in a complicated condition which affects all aspects of life. Therefore, patients must accept this status in order to cope with new life challenges.

Key points for policy, practice and/or research

• Nurses should become familiar with all aspects of coping with living with kidney transplantation.

• By understanding the meaning of coping in this specific stressful condition, nurses can identify areas affected by coping and adjust their care programmes based on changes in these areas.

• Providing high-quality care services to patients with kidney transplant requires a better understanding of many aspects of the patient's life.

Biography

Najmeh Valizadeh Zare, PhD, is Assistant Professor, Evidence-Based Care Research Center, Nursing and Midwifery School, Mashhad University of Medical Sciences, Mashhad, Iran. Her research areas include nursing care, health care and qualitative studies.

Eesa Mohammadi, PhD, is Full Professor, Nursing Department, Faculty of Medical Sciences, Tarbiat Modares University, Tehran, Iran. His research areas include qualitative research, development of instruments, chronic diseases, and caring.

Kourosh Zarea, PhD, is Associate Professor, Nursing Care Research Center in Chronic Disease, Nursing and Midwifery School, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran. His research area include quality of care, chronic illness care, qualitative and quantitative studies, epidemiology.

Nasrin Elahi, PhD, is Assistant Professor, Nursing Care Research Center in Chronic Disease, Nursing and Midwifery School, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran. Her research areas include nursing care, patient education, and qualitative studies.

Zahra Manzari, PhD, is Assistant Professor, Medical-Surgical Department, Nursing and Midwifery School, Mashhad University of Medical Sciences, Mashhad, Iran. Her research areas include nursing care, health care and qualitative studies.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Ethics

This study was approved by the ethical committee of Jundishapur Medical Sciences University in Ahvaz (No.: 1392.335).

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This study was supported financially by Jundishapur Medical Sciences University in Ahvaz.