Pain acceptance as a predictor of benefit-finding in cancer patients and the influence of the cultural background on both variables
Master's Thesis 2014 50 Pages
Table of Contents
Chapter One: Introduction and literature review
1.2 Overview of the literature
1.3 Literature review
1.4 Pain acceptance and intervention
Chapter Two: Methodology (study design)
2.1 Method and Hypotheses
Chapter Three: Pilot study
3.1 Pilot Rational
3.2 Method for the Pilot
Chapter Four: Data and it is analyses
4.1 Analysis (proposed research)
4.5 Time management
This proposed study is about pain in cancer patients. It explores the efficacy of pain acceptance in cancer patients. There are several questions it tries to answer: Does an individual who is suffering from cancer view the pain accompanying the illness as beneficial at any stage? Is there a relationship between pain acceptance and benefit finding? Does culture have an impact on pain acceptance and benefit finding in cancer patients? If the answer is yes, what are the cultural elements that influence pain acceptance and benefit finding? Do they refer to social relationships? Is it religion that has a major impact on the patient’s attitude? Or is there something else?
The present proposal hopes to recruit a sufficient number of participants that represent the cancer community. Participants will be from different ethnic groups throughout England, it will be a mixture of English, Chinese, Pakistani and Arabic people from the Middle East. Conducting this study will be beneficial for more than one group of people as it might provide indications for cancer patients regarding pain acceptance and the ability to gain benefit from being ill. It could also prove to be a helpful tool for the healthcare authorities and professionals giving them a clearer idea about the importance of culture in pain management, the way to deal with cultural differences and to observe some good practice and adapt it to work in other cultures or for other patients.
Chapter One: Introduction and literature review
Giving a brief explanation for the main terms might help us to understand the subject matter better. Illustrating what this paper is about will start with a few definitions and then I will highlight the goals and main points of the proposed research.
Pain is a universal phenomenon: no one is free from illness and feeling the pain. The fact that everybody around the globe is familiar with pain is evidence-based and yet there are some aspects of pain which remain unclear to us and require further examination (Williams, 2010). Terminologically, the word pain has a Latin origin: poena, meaning a fine or a penalty (Free, 2002). In recent years, the World Health Organization has defined pain as an unpleasant sensory or emotional experience associated with actual or potential tissue damage (Health24, 2014). The definition indicates the changes and covers more aspects of pain as time passes. Bond and Simpson (2006) explain that nowadays the concept of pain covers broader areas, i.e. its emotional, cognitive and sensory dimensions.
Researchers and specialists suggest that pain can be divided into two different types: the first one is acute pain which can be defined as the sensation that an individual feels after an injury, it is a short-term pain of less than twelve weeks duration. The second type of pain is called chronic pain, sometimes known as persistent or long term pain. “Chronic pain is continuous, long-term pain of more than 12 weeks or after the time that healing would have been thought to have occurred in pain after trauma or surgery” (The British Pain Society, 2008; Shaw, 2006; Carr & Goudas, 1999).
Researchers agreed that the term chronic pain refers to a complex and diverse group of patients. Therefore, pain management in chronic pain patients requires treatment involving multiple types of expertise and specialists. In other words, while managing chronic pain more than one specialist is necessary (Grady, Severn and Eldridge, 2002).
Cancer is one of the most life threatening chronic illnesses extensively affecting an individual’s life, with the capacity to terminate most, if not all of their daily routines. Cancer is a term used for diseases in which abnormal cells separate uncontrollably with the capacity to invade other tissues. “Cancer cells can spread to other parts of the body through the blood and lymph systems” (National Cancer Institute, 2014). There are about 200 different types of cancer. People with cancer not only experience physical pain but also experience psychological problems, such as depression, anxiety, fear and hopelessness (American Cancer Society, 2013). This indicates the need to understand several issues while addressing the needs of cancer patients and to encourage different approaches to the problem and look at the disease as more than just a physical disorder.
There are many factors contributing to physical suffering in cancer patients. For instance, pain could be the side effect of the treatment that the patient is undergoing, it might result from blocked blood, inflammation, psychological or emotional problems and many more. Cancer is generally associated with pain (Health Communities, 2014).
This pain is a complex, temporally changing symptom, an outcome of a mixture of pain mechanisms and ischemic and compression mechanisms at multiple sites. The experience of pain varies, depending on individual genetic make-up, medical history, mood, expectations and culture (Davis and Parala-Metz, 2014).
The experience of chronic pain forces patients and caregivers to take broader action than just focusing on the diagnosis and recommending treatment that is aimed at eliminating the pain. As a consequence of the diagnosis, procedures and treatments that might not be successful patients are likely to develop chronic pain and be troubled with it for extensive periods of time (LaChapelle, Lavoie and Boudreau, 2008).
Therefore, researchers have started looking at other areas of pain management, including its acceptance; with many of them treating the acceptance of chronic pain as their main focus.
The question remains, however, how could the patient’s suffering be relieved?.
Although pain might be a sign of damage or a problem in the body the former does not always occur. Furthermore, pain intensity might even sound more alarming than the actual damage, because pain is a combination of psychological and physical factors (Bond and Simpson, 2006). Therefore, pain management is dictated by the manner of suffering and intensity with which a patient is troubled.
Researchers define pain acceptance as a situation when an individual can “reduce unsuccessful attempts to avoid or control pain and focus instead on participation in valued activities and the pursuit of personally relevant goals” (McCracken, Vowles and Eccleston, 2004). The definition indicates that an individual who suffers from pain will try to engage in daily activities, instead of attempting to control the pain. By performing their daily duties, the patient may deal with pain as well as their life. Pain acceptance is a willingness to experience continuing pain and engage in the daily routines without taking or necessitating any action to avoid, or change the pain.
Ruth Warner describes it as the mechanism that helps people to see the advantages of victimization: “It refers to the idea that the victim has gained something positive from the negative event, that they have grown as a person, become better and learned what is really important in life (Warner, 9: 2008).
In other words, benefit finding consists in construing a positive meaning from a stressful or traumatic situation. Although finding positive points in the life-threatening diseases is not easy, the evidence and general human experience show that each event brings two perspectives or approaches: positive and negative. Kim, Schulz and Carver (2007) point out the phenomenon of personal growth or positive changes after facing a challenging or traumatic life experience. It shows that not only could we remain positive while exposed to unfavourable circumstances; we could also learn to appreciate a traumatic event as beneficial.
Benefit finding is more personal, it is directed at an individual. In other words, it is primarily the patient’s responsibility to focus on the positive aspects of the traumatic event, even though they may have carers. Beckham et al, (2010) argue that it is the inner strength that has an impact on the patients’ judgment of how capable they are, for example, to do exercise.
The word culture has many different meanings. Everyone has their definition of culture, and thus for some people it may refer to literature, music, art, and food, for others anthropologists and behavioural scientists, culture represent “the full range of learned human behaviour patterns” (Cliffs Test Prep Praxis II: Social Studies Content Knowledge Test, 85:2007). Anthropologists define culture as a set of societal rules and standards developed over time and shared by the members of a particular society (Free, 2002). This is what the current studies rely on in order to define the impact of culture on pain. People learn the norms and normality based on standards imposed by the culture they belong to. These acquired forms of behaviour cover all aspects of human life, including the way we respond, perceive, think, feel, or act in other specific ways.
Good et al. (1995) explain that the manner in which we perceive, express, and control pain is one of these learned forms of behaviours that all individuals acquire by participation in their cultures. We all display some types of behaviour that reveal the culture we came from, which means we believe and tend to act in the way our culture teaches us as normal.
Although there is a considerable number of studies about chronic pain acceptance (McCracken, Vowles, and Eccleston, 2004; 2005; Veehof, Oskam, Schreurs and Bohlmeijer, 2011) few of them explore pain acceptance related to cancer patients (Feros et al, 2013: Cohen et al, 2005). Most, if not all, of the researchers involved in studies on pain acceptance in cancer patients, argue that this field needs more research (see for example: Gauthier et al,. 2009: Mack et al,2008). Therefore, it is important to address particularly this gap in the research because cancer is a widespread illness with many aspects that need to be explored.
Despite being the main focus for a great number of undergraduate and postgraduate theses, pain and its management have not been fully explored and need more analytical studies (Bond and Simpson, 2006).
Regarding pain acceptance and benefit-finding, so far there seem to have been no studies that would explore the relationship between these two variables. For the purpose of this work I have searched for pain acceptance and benefit finding in a few databases (PubMed, SOLAR, psych info and Google scholar databases) but could not find any studies exploring the variables in question. Although researchers have explored the relationship between culture and chronic pain, the impact of culture in pain analysis of cancer patients still has not been described comprehensively.
This piece of writing is divided into two main parts, first part is a research proposal and second part is a pilot study. The present study proposal aims to find the relationship between pain acceptance and benefit-finding in cancer patients. It endeavours to demonstrate a new aspect of cancer and add a new perspective to the specialist literature. Moreover, it seeks to illustrate the impact of cultural background on pain acceptance and benefit-finding in cancer patients.
The present research proposal seeks to pinpoint the cultural differences affecting patients’ abilities, and the elements inside culture which would be helpful for a patient facing the disease or vice versa.
In addition, the current paper proposes a pilot study preceding the actual study with the purpose of checking the instruments and the procedure and demonstrating the relationship between the variables in question on the basic level. The author’s hopes are to assist cancer patients and improve their quality of life.
1.2 Overview of the literature
This paper is not a systematic review explaining the details of how the data was collected, and where and which databases were used. It gives a clearer idea about the specialist literature that has been used, and this I will briefly explain.
Nowadays there are several available databases that provide a great number of studies and research covering most subjects. Using different databases provides an opportunity to collect information from a variety of sources which enable looking at the subject from different angles. For the purpose of collecting adequate resources, I have used PubMed, SOLAR, Psych Info and Google Scholar databases. These are electronic library websites which supply thousands of academic studies and articles.
The purpose of the present research proposal is to demonstrate a new aspect of pain acceptance in cancer patients. Therefore, a considerable amount of the literature on racial and ethnic background in pain has been reviewed. As for information about pain and chronic pain the current proposal refers to studies and articles published between 1990 and 2014 (at the beginning of this period pain acceptance started to be explored).
We have collected data which focuses on pain acceptance and benefit finding in cancer patients in addition to the studies and research that explores racial and ethnic-social context in pain acceptance, expression, tolerance, and benefit finding around the world.
The mentioned databases are reliable and have valid information. These databases provide academic resources that have got ethical approval and have been checked by academic centres and journals.
- These websites provide academic information and studies which are scientifically validated by publishing houses.
- Are linked to other journals with more studies and resources. For instance, through Solar database it is possible to reach a number of scientific journals and studies.
- Are user-friendly and efficient.
- Have been used and recommended by teachers and other researchers.
To cover a wide variety of subjects and get enough resources about the current project, I have used several terms such as pain acceptance, cancer, benefit finding, pain and culture. I have collected around (300) studies and articles. After reviewing them, I have included (130) of them in the research. Around (170) of the collected studies that were not related to the research subject were excluded: some of them focused on other types of pain, such as back pain, others were out-dated.
1.3 Literature review
Pain is one of the most common reasons why patients seek help of health care consultants. We all undergo some sort of treatment at some point in our lives, because of the pain or injuries that we experience, e.g. headache, cuts, broken bones and other problems. Loeser, and Melzack (1999) argue that pain was seen from purely biological perspective till the beginning of the 1960s, and was believed to be an inevitable sensory response to tissue damage. It was not until recently that research focused on other dimensions of pain. Researchers have changed our understanding of the mechanisms that underline pain and of pain treatment.
There are different types of pain, but as it was mentioned at the beginning of this paper, the main categories are distinguished based on the differentiation between acute and chronic forms of pain. The former is a normal predicted physiological response to bodily damage or injury and it lasts short time. Despite this characteristic and the fact that it heals in the predicted/usual time, researchers cannot deny the impact of personal believes, and attitudes on the individual experience of acute pain (Carr and Goudas, 1999). However, there is no concrete evidence to support the statement that believes or attitude would affect a personal approach to dealing with acute pain. Therefore, the discussion in this paper is concentrated on the second type of pain, i.e. chronic pain.
The history of chronic pain examination indicates that chronic pain covers more than what is called biological pain. Nowadays pain can mean physiological and psychological sensation, which is body damage as well as emotional pain (Bond and Simpson, 2006).
What is meant by psychological pain was defined by Mee et al, (2011) as an emotionally-based extremely unpleasant feeling which can be experienced as torment. It can be associated with a psychiatric disorder or with a severe emotional trauma, such as death of one’s child. An individual can suffer from a psychological distress resulting from a biological injury, but not only.. Emotional pain can be experienced without any bodily damage, and thus can be rather deceptive. On balance, pain might be a physiological manifestation of a psychological problem or it might be purely related to tissue and body problems (Loeser, and Melzack, 1999; Mee et al, 2011).
There is one undeniable feature referring to all types of pain: its subjective nature. The subjectivity of pain plays a significant role in everything that is related to pain. Therefore, pain must be examined across a range of disciplines, and considered in relation to important non-scientific influences, such as emotional responses and social determinants (Coghill, 2010). Hence we could build our hypothesis that social roles, cultural background and education are part of the complex concept of the study of pain. The following paragraphs try to demonstrate a better image of each aspect of pain and notions that may influence it.
1.3.2 Cancer and pain acceptance
Over the past decade, an important part of research has been focused on pointing out and discovering the acceptance of pain in chronic pain treatment. The data gathered from specialist literature illustrates the efficacy of pain acceptance in some aspects of chronic pain. However, it does not cover all areas of the phenomenon.
The notion of pain has undergone a radical transformation and it functions as a broader concept nowadays, including physical and psychological suffering. Pain acceptance has emerged as an important strategy that may limit the extent of suffering that often accompanies the experience of chronic pain, including cancer (Vowles, McCracken, McLeod and Eccleston, 2008).
Being one of the most dangerous chronic diseases around the world, cancer may cause pain that continues throughout patients’ lives (Gauthier, et al., 2009). Pain and stress become an inevitable part of the disease from the moment of diagnosis. And it is not only the illness itself but also the treatment process that may bring suffering and distress.
What is more, even if the patient survives cancer they may still experience stress and pain (Urcuyo, Boyers, Carver & Antoni, 2005). The pain in cancer patients is often continuous, disturbing patient’s thinking, feeling and bodily functions, the pain that does not relate to a specific time, not even the type of cancer, as all of them bring pain at different levels. Cancer and pain are inseparable: “from closure of diagnosing to treatments and even after treatments, all that relates to cancer is grief and pain” (Badger, Braden & Mishel, 2001; Urcuyo et al., 2004).
The right words to define cancer pain are whatever the person experiencing it says, and it exists whenever they say it does (Cancer-Pain, 2002). Pain belongs to the most common symptoms of cancer, its level and intensity will normally increase as the illness progresses. The pain in cancer can be acute and chronic based on the nature, onset and duration of the disease (Davis and Parala-metz, 2014). Experiencing pain means suffering at work, home, and while spending time with family, friends; it might mean feeling hopeless and helpless when the patient notices that they cannot control the pain. Furthermore, it might have an impact on the patient’s mood and they may become hostile or aggressive towards people who do not understand the meaning of pain (Hardie, 2008).
Cancer is a bio-psycho-social illness which is characterised by multiple types of pain and problems such as tissue damage, distorted body image, depression, anxiety, distress, lack of interest, inaction, lack of energy, social withdrawal, loss of employment, family problems and many more (American Cancer Society, 2013; National Cancer Institute, 2014; Palesh et al., 2007; Pasquini et al., 2008). Cancer belongs to the most painful illnesses that affect multiple areas of human life (Gauthier, et al., 2009). Researchers and specialists have been working intensely to find a successful form of treatment but the battle still is not over. In the last 20 years, researchers have focused on patients’ strategies and behaviour management as the primary forms of dealing with chronic pain, including cancer (McCracken and Eccleston, 2003).
Regarding patients’ response to cancer, evidence from literature shows that fear, loss of control and emotional disturbance belong to the most common reactions to cancer. Unsurprisingly then, there are numerous publications, such as self-help books and articles encouraging patients to use alternative methods of treatment or illness management, sometimes verging on the supernatural, They often suggest that cancer patients must not express any distress, because it might affect their abilities to combat the disease and make their immune system weaker, whereas Houldin (2000) argues that accepting cancer pain does not mean giving up and leaving the battle, but using better coping strategies and different ways to deal with cancer.
What is usually meant by accepting pain could be described as the patient working and directing their energy in two ways: 1) through activity engagement, that is the ability to get involved in daily activities even though they experience pain; 2) through pain willingness, that is the readiness to experience the pain and not wasting the energy to control it (Kratz, Davis, and Zautra, 2007; Gauthier et al 2009).
It cannot be denied that for some patients such acceptance may come across as a barrier and be fraught with difficulties. La chapelle et al,. (2008) argue that for many women who suffer from cancer the term of ‘pain acceptance’ means giving up or giving in to their pain. Therefore, many respondents would prefer to use other words, e.g. “dealing with pain”, or “living with pain” (one of the participants said: “I am living with pain and it is my situation but it is not acceptance”).
Therefore, we could say that the term pain acceptance and its implications have yet a long way to achieve their desired acknowledgement.
Developing pain acceptance is a difficult process to undergo or guide the patient through and there are two aspects to be considered: the patient needs to abandon pain control of their own resources and give up controlling the pain and learn how to live with pain despite its severity (LaChapelle et al, 2008).
Pain acceptance means that a patient continues engagement in activities despite experiencing pain, and accepts the presence of pain, not attempting to control it and trying to live a satisfying life regardless of it (McCracken, 1998). The patient’s feelings towards pain and daily life play an important role in managing the degree of pain. To put it another way, an individual who suffers from pain accepts the pain instead of thinking how to control it, and therefore they are likely to engage in activities they find enjoyable.
During an activity which makes patients feel good, any type of pain could be reduced and their focus can shift from pain to the activity because it triggers production of endorphins. In contrast, a patient who feels worried and anxious about the injury or the source of the pain would neither be able to accept the pain nor tolerate it (Hardie, 2008).
Patients with chronic pain are extremely likely to face difficulties, suffering and distress regardless of whether they accept the pain or try to ignore it. Either approach requires a lot of effort. As Ruehlman (2014) argues that pain acceptance appears to be a factor which contributes to reducing pain severity and distress, as well as lowering pain interference and disability it seems a more useful strategy. A large and growing body of literature has reported investigations of the efficacy of pain acceptance in chronic pain (De Boer et al, 2014, Veehof et al, 2011).
Researchers illustrate pain acceptance as an important factor for better physical, social and emotional functioning. In other words, pain acceptance is associated with relieving depression, lesser physical and psychosocial disability, more daily uptime and better work status (McCracken & Eccleston, 2003; McCracken, et al., 1999). What is more, researchers argue that pain acceptance is an important aspect of adaptation even to refractory disease. That is to say, pain acceptance encourages patients to deal with the illness that is resistant to treatment and cure (Gauthier, et al., 2009). It is a way to adapt to the state when pain is permanent in order to maintain the daily performance intact, if possible.
Protopapa and Senior (2013) suggest that there is a link between pain acceptance and physical, psychosocial well-being in chronic non-malignant pain. It is a kind of pain which lasts longer than usual, or persists beyond the time of expected healing; which is sometimes known as a chronic non-cancer pain (Jackman, Purvis and Mallet, 2008; Fishbain et al, 2008).
Not only does pain acceptance improve patient’s physical conditions but it also contributes to psychological aspects of human functioning, such as depression, anxiety (McCracken, 1998; McCracken et al., 1999). In addition, according to Jacob et al., (1993) an individual who lives a satisfying life while experiencing pain, is likely to feel better and experience less depression.
This is a revolutionary point that supports the effectiveness of pain acceptance: a fulfilling life with a low level of depression and with healthy feelings. Occupational therapists argue that the right balance of work, rest and leisure are essential for people’s health and wellbeing, where involvement in physical activity helps to improve depressive symptoms (Blake, 2012; The British Association of Occupational Therapist, 2011). Pain acceptance is all about how to perform on a daily basis while experiencing pain. In other words, having pain should not make patient withdraw from life, a problem which is often observed.
Gauthier, et al., (2009) draw our attention to the importance of pain acceptance in chronic illnesses by saying that the person who accepts chronic pain could have a better quality of life than the one who does not accept it. The experience of pain relates to the way a patient deals with it more than the existence of the pain itself. In a major study McCracken, Vowles and Eccleston (2004) recruited 235 participants, about 60% of them were women with a chronic pain (of minimum 118.7 months) across the United Kingdom. They reported that pain acceptance can significantly improve their life quality as long as two conditions are met: firstly, the patient has to engage in daily activities with a good attitude, even if they are experiencing pain; secondly the patient has to recognize the importance of not wasting their energy by avoiding or controlling the pain (it has been proved that this strategy does not work). Researchers also argue that the patient who does not attempt to control or avoid their pain would not only experience less distress and lower their pain intensity, but they would also require a lower level of health care.
In spite of being the cause and reason for multiple types of pain and distress, cancer and its acceptance will go through several stages (diagnose, treatment, after-treatment and Kubler- Ross stage). The variances and differences in these stages are based on the patient’s experience, education, support and surroundings (Elssas, 2013). Accepting pain is at the heart of all the stages as it affects the patient’s ability to respond and the way they live.
In another significant study, Protopapa and Senior (2013) recruited 116 cancer outpatients from a tertiary oncology centre in Greece. They report that activity engagement and willingness to bear pain as two pain acceptance subscales significantly contributed to their improved emotional, physical, and social functioning. However, activity engagement on its own promoted anxiety and depression. Thus, conclusions could be drawn that even though pain acceptance plays a crucial role in helping patients increase their functional adaptation to cancer-related pain, its components (activity engagement and pain willingness), if applied on their own, may show varied levels of effectiveness.
Moreover, Gauthier et al., (2009) conducted a unique cross-sectional study to test the relationship between pain acceptance and physical, psychological, and social wellbeing in 81 cancer patients at Princess Margret hospital in Canada and they found a negative correlation between depression and pain acceptance. In addition, willingness to suffer pain was negatively correlated with pain catastrophic. At the same time, the results of previous studies indicated that pain acceptance not only had a positive association with physical pain but also helped impact on psychological aspects of patients’ lives.
1.3.3 Benefit Finding and Pain
Commonly perceived, cancer as a cause of chronic pain and one of life threatening diseases can bring suffering, stress and as a result become a traumatic event to the patients (Coyne, 2013). On the other hand, with a natural tendency to rationalise disorderly events (Gestalt ‘closure)’, patients will sometimes view cancer experience as positive and life-changing (Ho, chan and Ho, 2004). The evidence from the specialist literature shows that sometimes a traumatic event could benefit the victim. In other words, an individual who suffers from a major illness, despite being affected by a traumatic situation has an opportunity to see life in positive way.
“Some individuals report a new appreciation of their own strength and resilience. Other people may feel that their relationships are stronger and that they feel emotionally closer to others, especially family and friends. Others report that they have become more compassionate or altruistic. Life philosophies may also change. Some people cite an enhanced appreciation of “the little things in life” and redirected priorities. Finally, some individuals note a new openness to spiritual experience or religious activities” (Urcuyo, et al, 2005; Lechner, Tennen, and Affleck, 2012).
The fact that there are positive and negative aspects in the traumatic events is based on evidence. It is the suffering individual who decides whether to find out about good or bad aspects of their life. The psycho-oncological literature suggests that an individual who focuses on the positives or benefits in adversity is more likely to find well-being than the one who focuses on the negatives (Pascoe and Edvardsson, 2013).
As mentioned at the beginning of this paper, the significant character in the benefit finding is the affected individual themselves. It is the patient or victim who can play a major role in finding positive aspects of such situations. As there is no specific term or definition to describe this phenomenon, in the specialist literature researchers have been using a range of terms to define it (Charmaz, 1983; Bertero & Wilmoth, 2007): self- help, self-appraisal, self-efficacy and self- improvement refer to the same point. ‘Self’ points to the patient helping themselves through their point of view, their inner strength, or their bio-psychosocial aspects in order to perform better in life while suffering from pain or problems.
‘Self’ can get benefits from the time of events or from the absence of distress, or sometimes from a traumatic situation (e.g. a break-up, a plane crash) as it may have some positive outcomes (Macmillan, 1997).
Thinking styles and behavioural aspects play a significant role in how patients cope with their affliction, whether they are able to receive the benefits of their situation or be dominated by the side-effects of the illness. According to McCracken and Eccleston (2003) the patient’s behavioural tendencies provide a fundamental element in the development and maintenance of chronic pain and pain associated disability, in other words the way in which an individual faces chronic pain is one of the most essential components in treatment. For instance, an individual who uses positively-orientated emotional coping strategies may be getting a benefit while living with and beyond cancer treatment (Thambyrajah et al., 2010: Couper et al., (2009). To illustrate it even better, Couper et al., (2007) argues that feeling guilty or self-blaming for any fault would result in psychological distress and become a source of stress.
Friedman et al., (2007) report that “higher levels of self-forgiveness are associated with improved mental and physical health in both cancer patients and in the general population.” Overall, this evidence shows that it is the individual themselves who plays the major role in benefit finding.
A considerable amount of literature has been published on cancer. These studies highlight clearly that this complex disease causes bio-psycho-social pain and problems: the suffering individual may complain of depression, psychological pain, disrupted social and family relations, inability to work etc. (Palesh et al., 2007; Pasquini et al., 2008). And yet researchers claim that the awareness about cancer and its pain is growing, with patients sometimes capable of viewing the disease as positive or beneficial. Their statements about their condition may refer to some advantages of the situation, such as “improved personal resources, enhanced sense of purpose, greater spirituality, closer relations with others, and changes in life priorities” (Urcuyo et al., 2004). Another significant study indicates the personal growth after a stressful or traumatic event. Park (1996) conducted a study on a big number of participants (around 500 respondents). The aim was to find out about the personal development in the past year's most stressful experience (e.g. break-up, death of a relative, illness, accident). It was observed that the majority of the participants who experienced one of these events displayed a considerable degree of personal growth. This indicates that even those who we may refer to as victimized can gain benefit and personal growth while confronting difficulties or traumatic experiences in their lives.
Individual characteristics and personal differences not only influence the coping strategies but also the way patients deal with their illnesses. The psychological response may cause even more suffering than the initial physical stimulus (Ochsner, et al., 2006). Therefore, the level of gained benefit and positive attitude are based on the individual’s way of thinking, perception, copying abilities etc.
Evidence shows that some patients face cancer better than others. Protopapa and Senior (2013) argue that different cancer patients display different levels of pain acceptance.
The fundamental point about pain acceptance is provided through individual and cultural differences. Dmckeever (2007) argues that it might be that one person is mentally stronger than another: “One person might feel an unbearable amount of pain, but stays quiet, does not medicate, goes on with his/her day, etc, while another person, under the same physical stress, manifests his/her pain in moaning, pill-popping, crying, being bed-ridden, etc.
Maybe the person who seems stronger has conditioned him-/herself to suppress such manifestations of pain, or maybe he/she has been conditioned by society...”. Therefore, a conclusion that can be drawn here is that it is ‘self’ that shapes the level of tolerance, including culture influences. For instance, psychological abilities and coping strategies are important points for women suffering from breast cancer, who need to deal with and accept the new situation, and fight against it in a positive manner (Hewitt, Herdman and Holland, 2004). Diagnoses, treatments and suffering limit cancer patient’s abilities to perform on a daily basis. Thus, the new situation (i.e. having cancer) would impact on their views and they would redefine themselves (Charmaz, 1983).
In a Meta-Synthesis review Bertero and Wilmoth (2007) argue that the women who got breast cancer would analyse their situation in a different way to others, their priorities would change, simple things might become important ones, patients may choose not to waste their energy on small, irritating things, in addition, they could try to make meaning out of what has happened to them. Affleck and Tennen (1996) suggest that benefit finding may influence psychological and physical health outcomes.
Reviewing 30 articles about cancer related to self and its efficacy, Bertero and Wilmoth (2007) found that self in cancer patients would be affected on four different levels: 1.)“awareness of one’s own mortality”, 2.) “living with an uncertain certainty”, 3.) “attachment validation”, and 4.)“redefinition of the Self”.
In the beginning, cancer patients become aware of the possibility that their illness might be terminal, sometimes all they can envision is death and they can be awaiting it to happen at any moment. Seeing life in this way is likely to bring sadness, depression and fear.
The way an individual faces this situation could have an impact on the rest of their life. It is a critical moment to improve and change one’s mind-set to get better life incorporated with proper care.
In recent years, there has been an increasing interest in positive emotions which support and improve physical and psychological aspects of functioning in cancer patients. These interests have prompted researchers to investigate more and find out about the relationship between pains and benefit finding.
Overall, the data and arguments in the literature show that benefit finding is an increasingly important area in the process of treatment and after treatment in chronic diseases including cancer. Studies have shown that traumatic events could be seen as beneficial situations which could help patients to change their perspective on life and re-frame their lives and their priorities. The previous paragraphs have given us enough reasons to get to the point where we want to test the hypothesis that pain acceptance is associated with benefit finding in cancer patients.
1.3.4 Pain and Culture
As we mentioned before, individual differences have an impact on the patients’ coping strategies and styles (how an individual copes with pain), thinking, and many more. These differences are not limited to one group of people. Individual differences and their bigger context, including culture differences, affect patients’ responses to the illnesses. In recent years, researchers have been focusing on cultural aspects regarding acute and chronic pain. Broadly speaking, there is a considerable number of studies that explore the impact of culture on pain and its management (Edwards et al, 2001; Callister, 2003; Narayan, 2010). Seen as a part of culture, a human being is greatly influenced by its dimensions: religious, geographic, socioeconomic and other (Narayan, 2010).
Cultural differences play an important role and affect not only patients but also health professionals and caregivers (nurses, doctors). The following paragraphs will briefly explain both perspectives in two sections.
Patient’s pain and culture:
In the beginning of this paper we have explained that all individuals have their own norms and standards of thinking, feeling, responding and measuring things based on their cultural backgrounds (Free, 2002; Good et al., 1995). We learn from culture and behave in the way we have learnt, so we could say culture equals certain behaviour. Thus, our response to pain as one of the aspects of our conditioned behaviour is different from one culture to another.
Lasch (2000) argues that culture affects the patient’s perception of pain; furthermore, it influences an individual’s experience of pain, thus affecting the patient’s response to the illness. Even though there are few studies about culture efficacy on cancer pain, they suggest that culture influences cancer patient’s perception, expression, response, use of language, and pain tolerance (Juarez, Ferrell and Borneman, 1998; Geenwald, 1991).
Furthermore, these researchers argue that culture does not only affect cancer patients and their reaction to the disease, but also the manner in which the family and health professionals perceive and deal with the situation.
Having different cultural background does not mean that a person from one cultural context feels the pain and another one, from another context, does not feel it.
Pain is one of the universal phenomena that exist among all cultures, from small, undeveloped countries to the large, developed ones. Thus, although pain stimuli alarm and inform the brain about danger and this alertness exists in all human beings equally, the perception, response and approach to pain control vary among cultures (Free, 2002).
Evidence from specialist literature shows that people’s sensation of pain is approximately the same, but the level of pain tolerance is different. In other words, all individuals feel and experience pain without exception, but the level of pain tolerance will vary from one culture to another and it might even be specific to an ethnic group. That is, some groups may endure a higher level of pain stimuli for longer periods than others (Campbella, Edward and Fillingim, 2005).
Pain tolerance is “the amount of pain a person can handle without breaking down, either physically or emotionally” (Dellwo, 2012) . The definition explains that some individuals have higher pain thresholds than others, which directly affects one’s responses and expressions. Nayak, Shiflett, Eshun, & Levine (2000) conducted a significant comparative study between East India college students and United States’ students. According to these researchers the students who came from East India had higher pain tolerance than the students who came from the United States.
Experiencing pain by the patient themselves in the early stages of their life or seeing a family member suffer from pain could influence the patient’s and other family member’s ability to deal with and face the pain at some point of their lives. Pain components (cognitive, emotional, behavioral) are not only influenced by the patients’ experience but also by the experiences of the relatives. And because people have different backgrounds, their response to the illness will be different, even though they may suffer from a similar health condition. Juarez, Ferrell and Borneman (1998) report that one of the participants said that “ no one in their family ever complained when they were in pain and that’s how I am. I endure the pain alone until I cannot stand it anymore.”
Other individuals experiencing pain in their unique social and ethnic background can affect the patients’ perception of pain; an earlier experience will brand future reactions regarding pain (Bates, 1987). Not only does culture have an impact on the patient’s feelings and perception, it also forms the meaning of pain. Kodiath (1998 cited in Callister, 2003) points out that the meanings of pain vary among cultures and that patient who find meaning in their pain experience less suffering than those who find pain meaningless.
Religious attitude toward pain is another element of culture that would impact on the patient’s ability to accept, deal with and express pain. According to Villarruel and De Montellano (1992) the Aztec and the Mayan civilizations had six perspectives on the experience of pain, which still exist among Mexican Americans. First of all, pain can be seen as a message from God, as he is the one who has the power to impose it.
Secondly, suffering and experiencing pain are man’s duty and part of life. Thirdly, pain is an accepted and anticipated form of sensation. Another point was that man should withstand pain with stoicism. Moreover, obtaining balance is essential in order to relieve pain. Finally, what is common among cultures is the belief that pain results from bad or abnormal actions.
Religion plays an important role in how patients accept pain, as it can give them some extra strength. If they are active practitioners of religious rituals they may find it easier to face the pain and distress (Callister, 2003). In a qualitative study which set out to determine the influence of culture on pain management in Hispanic patients suffering from cancer Juarez et al (1998) found that cultural background (family beliefs, religion) is the main element affecting pain management and expression by the patient and the care givers. After interviewing 17 Hispanic cancer patients, the researchers argued that religion, faith, stoicism, hiding pain, pride, finding god’s will in experiencing pain, strength, and believing that men are not supposed to cry are among the main features that participants were talking about regarding caner pain management.
Significant discrepancies when it comes to pain tolerance, expression and perception can be ascribed to high cultural diversity; groups of common cultural roots do not normally display significant differences in the manner pain is approached or coped with.
Gupta, et al,. (2009) conducted a study to determine the cultural differences in pain tolerance among people from similar cultural backgrounds in Malaysia (Malays, Chines, India students). They report that there were no statistically significant differences in pain tolerance among these people, whereas data from specialist literature shows that diverse cultural backgrounds (i.e. white and African-American) display more discrepancy in pain tolerance (Campbell et al, 2004; Edwards, Doleys, Lowery & Fillingim, 2001).
On balance, culture shapes the way its members think and behave; it influences everyone by forming our knowledge and perception of the world, norms of behaviour, morality and ethics. Moreover, culture influences the way people experience pain, including providing them with the guidelines of when and how to appropriately ask for treatment, or of the suitable form of treatment: modern or traditional, injection or pills (Melzack and Katz, 2001; Narayan, 2010; Gupta, et al,. 2009).
Patient’s cultural background and health professionals:
With immigration increasing around the world, pain and its cultural differences become some of the key points to be considered by health care. Their importance is revealed through the relationship between patients and health professionals (nurses, doctors etc.) who need specific cultural awareness about the way they should provide the care.
For instance, nurses participate in assessment, support, education of patients and management of their pain, both acute and chronic. Thus, it is essential for health professionals to understand their client’s perception of pain and the resulting behaviour (Callister, 2003). Taking care of people without having any knowledge about their culture, health professionals may disregard factors likely to influence their patient’s health, illness, wellness, recovery and health maintenance (Sagar, 2012).
What seems the most challenging is for a clinician to address the cultural aspects of treatment related to the patient’s belief system. Some research data indicates that general aspects of cultural behaviour can be recognised by healthcare professionals, e.g. Hispanic, Middle Eastern, and Mediterranean patients are expected to be more expressive and to want to have people around, whereas patients from Northern European and Asian cultural backgrounds are expected to be more stoical and to prefer to be left with the pain on their own.
Still, such broad generalisations cannot be over applied and it needs to be borne in mind that “not everyone in every culture conforms to a set of expected behaviours or beliefs” (Collins, 2003; Carteret, 2010). Good practice suggests that clinicians can use a better strategy by simply asking clients about their belief system in order to deal with the cultural and social differences in the course of treatment (Free. 2002).
The healthcare providers in all multicultural countries should be encouraged to pay more attention to the cultural differences among their patients who may hold different beliefs and understanding of pain. For example, the perception of pain among people from Nuer, Dinka, Ethiopia, Kartoum or Kenya is based on traditional concepts, thus pain is often considered a result of a social transgression, of crime or of sin.
Some of these people have left from their original surroundings and they may be living in a modern society and receiving modern treatment, but they still have their own belief system (Haviland, 1987, cited in Free, 2002). Another aspect of culture that ought to be significant for health professionals is the language: people use different words to explain the severity of pain. Not all patients will use the western concepts to express the degree or nature of pain that they experience (e.g. sharp, throbbing, stabbing or aching). For some tribal cultures idioms or words such as ‘spider webs’, or the tones of drums and flutes represent a more natural way to talk about or to express pain (Carteret, 2010).
Others will pay attention to the appearance of health professionals, their posture, body language and other forms of nonverbal communication, especially if there is a language barrier.
For instance, for Asian patients, who are used to having a formal relationship with their healthcare providers, a casual appearance, or non-formal attitude may inhibit the development of a trusting relationship (Institute for Safe Medication Practices, 2014).
The meaning of pain will differ depending on cultural differentiations or interpretations. The language we use on a daily basis is influenced by culture and it shapes communication. Culture conditions the words and terms of communication and expression (Campbell et al, 2005). The crucial aspect of language and understandable communication with patients is that knowing their language helps the clinician to ensure better progress of treatment. Researchers observe that knowledge of Spanish among clinicians and nurses who have experience with Hispanic patients has important implications on the “established pain treatment practices” (In the Face of Pain, 2013).
Nurses and clinicians provide treatment based on the diagnosis. Help and support are normally based on the severity of the pain their patients experience. Often patients’ self-reports or descriptions of pain mislead nurses because people from different cultures rate the pain severity differently, as each culture has its own language to express the pain (Pasero & McCaffery, 2001). For instance, Edwards, Fillingim, & Keefe (2001) conducted a study among college students from two different cultural backgrounds (African-American and Caucasian); they compared the thermal pain response between these two ethnic groups. The results show that African-Americans rated the pain intensity higher than the Caucasian students.
The rate of pain intensity, expression and complaining about the pain are different from one culture to another, therefore health professionals can be misled while assessing the pain intensity based on the expression or pain rate.
Patients have diverse manners of expression. For instance, those of Puerto Rican background tend to be outspoken and loud in their description pain, whereas people from China will typically remain silent as pain is culturally appreciated and it would be dishonour to shout or express the pain loudly (Carteret, 2010; Munoz and Lukmann, 2005).
Collected data shows that nurses or physicians underestimate the pain of majority of cancer patients; hence the patients receive inadequate treatment and support. Health professionals, patient’s character, gender and background are some of the elements that can contribute to such misevaluation (American medical association, 1998).
What is critical for good practice is to understand the patient’s needs and the best way to cure their pain. To do that health professionals need to understand their client’s perspective on pain and illnesses.
Understanding the expression, use of language and pain rating should be taken into account by health professionals so as to understand the limits of polite behaviour and respect. For example, in West African countries like Benin, the process of labour and delivery is strictly a “woman thing.” Men are neither present at nor have a responsibility in this (Sargent, 1982, cited in Free, 2002). Therefore, women from this culture will not allow men to take care of them in hospital. Similarly, in Middle Eastern countries men are cautious and uncomfortable to see male doctors treating their women or daughters.
The available data indicates strong links between work performance of nurses and cultural understanding because nurses who are aware of the cultural disposition of the women suffering from breast cancer are better able to provide these women with appropriate resources to help them adapt to living with their illness (Bertero and Wilmoth, 2007).
To summarise, the relation between cultural sensitivity and pain acceptance is most easily observable at pain and health departments. The points below give an overview of what should be considered by care providers.
- Culture affects the individual’s beliefs, behaviour, perception of pain, response to pain copying strategies.
- People from different ethnic backgrounds have a different level of pain tolerance.
- Culture plays a great role in all aspects of human life: psychological, spiritual, social and physical dimensions.
- Expression of pain varies from one ethnic group to another: some groups are more likely to show their pain, while others prefer to keep it private, because it might be seen as weakness.
- The meaning of pain may differ from one individual to another: religious people may interpret pain as an important part of life, something that might prove to be beneficial for the afterlife -- pain may remove their sins and make them clean; others believe that having pain is a health problem and that they have control over it. In both groups the copying strategies and the management will require a distinct approach.
- Data from specialist literature shows that there are differences in prevalence and pain severity based on culture.
1.4 Pain acceptance and intervention
Pain is a result of damage or problems, and treatments and medication need to be introduced to heal the damage. Unfortunately, in chronic pain treatment and intervention will not eliminate 100% of the pain; therefore, the patients are in a continuous search to find better way to alleviate their pain (Candib, 2004; McCracken, 1998).
The chronic pain intervention goes through several stages, such as recommending medication, mediation, devising the copying strategies, or considering the cognitive-behavioural perspective. Most recently the most effective method has been the acceptance-based intervention (Vowles, Witkiewtz, Sowden and Ashworth, 2014; McCracken, Vowles, & Eccleston, 2005).
Before developing their work and focus on pain acceptance researchers were studying and recommending other coping strategies for patients suffering from chronic pain (Morley, Eccleston and Williams, 1999). However, collected data and evidence do not show a strong indication of using any specific type of coping strategies. In addition, the main focus in the coping approach is heavy reliance on cognitive responses and not on behavioural aspects, which means that coping strategies lack an important aspect that has a great influence on the process of medical treatment (Jensen, Turner and Romano, 2001).
The attempts to find better forms of intervention continue. Experts agree that Cognitive Behavioral Therapy (CBT) is one of the most reliable standard methods for chronic pain patients. It consists of both cognitive and behavioural techniques, which work effectively for psychological distress and disabilities in chronic pain (Veehof et al,. 2011). Nevertheless, it seems that CBT is not equally effective for all patients. Thus, the research continuesin order to find an alternative method, and in recent years the interest has turned towards acceptance-based therapies (Vlaeyen and Morley, 2005).
There are a considerable number of studies showing the efficacy of acceptance-based intervention and how it can improve patients’ condition in multidimensional aspects. One of the most significant studies conducted by McCracken and Eccleston (2003) compares acceptance of chronic pain and coping with chronic pain in predicting adjustment to chronic pain. They recruited 230 adults at a university pain management centre. The result shows that coping variables were relatively weakly related to acceptance of pain and relatively unreliably related to pain adjustment variables. They argue that pain acceptance is more reliable and effective than coping strategies as there has not been any clear picture in the literature so far to support using coping strategies for chronic pain.
Experts and researchers suggest that it might be better for an individual with chronic pain to accept it and try to live to with it than spend time to find the cure that would eliminate all the pain.
The time and energy that a patient spends trying to control or avoid a thought, feeling, or physical sensation can have opposite results, increase the level of pain and cause more suffering (McCracken, Vowles, Eccleston, 2005).
The main focus in acceptance-based therapies is on pain acceptance and the strategies that would help patients to accept the presence of pain rather than make them think how to control it. There are several programs that follow this approach. In particular, the mindfulness-based stress reduction program (MBSR) which is “the practice of paying attention, on purpose, moment-to-moment, in a way that is nonjudgmental and nonreactive”. It brings techniques of mindfulness, meditation and yoga together.
The main goal of MBSR is to train patients to live their daily lives coping with stress, illness, and pain (Rosenzweig et al., 2010; Dryden and Still, 2006). Another programme is the mindfulness-based cognitive therapy (MBCT): an eight-week program that can help patients cope more effectively with chronic pain and illness; it also helps them learn to appreciate their lives. Collected data shows that the programme may have a good outcome also for patients with depression (Bostanov, Keune, Kotchoubey and Hautzinger, 2012; Kuyken and Evans, 2014).
Another acceptance-based form of intervention is acceptance and commitment therapy (ACT): “It targets ineffective control strategies and experiential avoidance. People learn to stay in contact with unpleasant emotions, sensations, and thoughts” (Veehof et al,. 2011). ACT focuses on thoughts, not aiming to control or change their content but working on the patient’s relation or attitude towards their thoughts. This approach tries to teach patients that it is normal to have difficult thoughts without being controlled by them. Its goal is to train patients to become more flexible psychologically and to enjoy their daily routines despite the distress and pain. This method uses a range of acceptance strategies, mindfulness techniques, and behavioural approaches (Feros, Lane, Ciarrochi and Blackledge, 2013).
The body of specialist literature on acceptance-based therapies has been growing in recent years (McCracken and Gutiérrez-Martínez, 2011; Wicksell, Olsson and Hayes, 2011; Vowles, McCracken and O’Brien, 2011). This proposal uses it to highlight the importance of pain acceptance. A few methods of intervention have been briefly mentioned here to acknowledge their availability and to demonstrate that reaching the stage of pain acceptance requires their employment. If provided with appropriate help and support from caregivers and health professionals, patients can accept the pain and fight the illnesses to recover from it or to enjoy quality life.
The following section will demonstrate briefly a few elements that affect pain acceptance in chronic pain patients in general, including cancer patients. It also explains the reasons and causes of the cultural differences and possible forms of misunderstanding between patients and health professionals.
Personal resources or individual differences
Every human being as a social creature is different on bio-psycho-social basis. We have different immune systems, different levels of pain tolerance, and different abilities to face and deal with illnesses (Edward, Doleys, Lowery & Fillingim, 2003; Eccleston, 2001). Having different experience would shape an individual’s future, coping strategies regarding pain and life events. Schaefer and Moos (1998) argue that the people who experienced some life crises are likely to have more positive life changes following the trauma because the past crisis experience equips them with better coping resources.
The way children are brought up will have an impact on the way they react to pain. According to Carteret (2010), children will learn what they are taught, including attitudes to pain. By Western standards an easy patient is the one who integrates with the medical system for the people in this part of the world, whereas children in other parts of the world might have been taught the opposite, knowing that crying after a small injury will attract great empathy and support, which conditions similar responses in adulthood.
There has always been a debate about the efficacy of religion in approaching pain, whether it helps patients or not. A recent study revealed that practicing religious rituals while experiencing pain could help to reduce the pain and resist higher levels of pain. Wiech et al, (2008) argue that ”religion-associated pain resistance is linked to the activation of the brain right ventrolateral prefrontal cortex (VLPFC), an area associated with both cognitive down-regulation of pain and reassessment of the emotional meaning of an experience.” Some cultures teach people to believe in God and his power without questioning it. For example, having pain or illnesses will be explained as a divine way of removing sin, therefore religious people are likely to accept the suffering without questioning it (Carteret, 2010).
Most academic disciplines keep investigating gender implications from many perspectives. Bio-psycho-social differences between males and females will have an impact on their performance in multiple contexts. These differences can affect pain acceptance and the level of pain tolerance (Gupta, et al,. 2009; Rollman and Lautenbacher, 2001; Eccleston, 2001). This study, however, only acknowledges the significance of gender in pain acceptance and improvement of chronic pain without investigating details of this broad subject.
Religion and culture play a significant role when it comes to the choice of medication. An individual from India may need more injections than any other types of treatment. Their preference and culture make them believe that injection is better than oral drugs (Gupta et al., 2009). Women from Islamic and African cultures who have vaginal yeast infections may prefer oral drugs to other forms of treatment applicable in this condition. Another case is that some people do not finish their prescribed treatment. For example, an individual from Vietnam takes half of the prescribed medication because they are often inclined to think that the medication is too strong (Institute for Safe Medication Practices, 2003).
Unfortunately, sometimes the beliefs may negatively affect the course of treatment and bring fatal consequences. Hoesli and Smith (2011) refer to a real story to illustrate this problem:
“a young woman who had an internal hemorrhage after a cesarean section of twins. As she was taken to the operating room, she gave consent for all diagnostic and therapeutic procedures necessary, except the administration of blood due to her religious beliefs. After stopping the bleed, physicians explained the severity of the situation if she did not receive a blood transfusion. The patient and family were asked repeatedly if she had changed her mind about receiving blood products. They were unwavering in their beliefs, and the patient subsequently died.”2
This somewhat extreme illustration brings to the attention of professionals the meaning of religious beliefs and their effect on the course of treatment and results of provided care . Here blood transfusion is only an example that in real life could take the form of prejudice against other forms of medical intervention, e.g. certain dietary requirements (i.e. prohibited foods) or notions about other transplant procedures (e.g. to do with animal tissue).
Chapter Two: Methodology (study design)
2.1 Method and Hypotheses
Proposed Research questions;
- Is there any relation between pain acceptance and benefit finding?
- Does pain acceptance differ from one cancer patient to another?
- Does culture have an impact on pain acceptance and benefit finding in cancer patients? And what is the supportive element of culture which helps patients to accept pain?
Pain acceptance can be associated with benefit finding in cancer patients. Moreover, it is supposed that cultural background may affect patient’s ability to accept pain and find benefit
The study aims to explore the efficacy of pain acceptance in cancer patients. Furthermore, it seeks to investigate the relationship between pain acceptance and benefit finding among cancer patients. In addition, it tries to explain the influence of cultural background on pain acceptance and benefit finding in cancer patients. This study will not focus on specific types of cancer patients. It will involve those who are able and want to participate in this project. We hope to contribute to the improvement of their situation and to make the quality of their life better by adding some new findings to the body of cancer literature.
- To demonstrate better understanding of the effectiveness of pain acceptance in cancer patients.
- To look into the relationship between pain acceptance and benefit finding.
- To fill the research gap in reference to pain acceptance and benefit finding in cancer.
- To illustrate the cultural impact on the pain acceptance and benefit finding in cancer patients.
This proposed study will be of mixed design (quantitative and qualitative): “Mixed methods designs are procedures for collecting, analysing, and mixing both quantitative and qualitative data in a single study or in a multiphase series of studies” (Creswell, 2012). The main purpose of this type of method is that a combination of qualitative and quantitative research would provide a better understanding of the problems and issues in question than if a single method was applied. This method allows the researchers to fully answer their questions, to get to the core of the subject, to address the study issue at a different level, to overcome the weakness of a single method, to cover the subject in detail and to fill the research gap.
The study will use questionnaires and interviews to collect data. Using questionnaires should be a proper tool to determine the relationship between pain acceptance and benefit finding, but not the impact of culture. Because culture and personal attitude towards pain are more subjective (Coghill, 2010) it is the interviewing that should create a chance to learn about the culture element influencing pain acceptance and benefit finding. The majority of participants will be filling questionnaires and some of the participants will be interviewed.
Choosing the mixed design has its advantages and disadvantages. Researchers argue that although the mixed method is the best one, it may still have its barriers and difficulties (Morgan, 2014; Creswell, 2012).
To demonstrate the strengths and weaknesses of the mixed method research, experts (Creswell, Klassen, Clark and Smith, 2011; 2010; Morgan, 2014; Creswell, 2012) highlight several points:
- Collecting data through different methods ensures gathering material that is not deficient
- The more versatile data collection, the greater the validation
- In contrast to a single method, this type will provide all the required information
- Easy to describe and report
- Better value for the generalisation of the results
At the same time researchers point out some barriers and difficulties connected with the method:
- It needs more time
- It requires additional effort, as researchers have to analyse different sets of results
- Researchers have to pay more attention to research design than in the case of using a single method
- It might require extra work on different types of resources and different types of writing styles.
The main condition to include any participant is that they must have or have had cancer at some point in their life. This study will not focus on any specific type of cancer, or the duration, because there is no evidence to support the idea that the length of time a person has suffered from pain may account for whether a person accepts pain or not (McCracken, Vowles and Eccleston, 2004). All participants will be adult (over 18) as we do not want to involve the age group of less than 18 years old. There will be no elderly age limit as long as they genuinely want to take part in this programme. In order not to make the participants feel any pressure, we will not recruit participants through their GPs, but will use other methods, such posters which will be put up in cancer centres.
To make sure that participants meet the requirements for inclusion in the study, experts and specialists will be responsible for checking participants’ health condition and other criteria in suitable and accessible places. We do not expect any harm or risk as we do not introduce any treatment or tests.
In order to ensure that patients do not develop more pain, their health condition should allow them to take part in the current study. In case of problems or specific requirements, there will be a support team present on the spot to administer necessary aid. It is critical to ensure that the participants are fully functioning and not in pain caused by their treatment. Because they will answer questions about pain and the beneficial aspects of their lives, we do not want them to reply in uncomfortable circumstances, for instance while in pain caused by chemotherapy.
Participants will be recruited throughout England from different cultural backgrounds (English, Chinese, Pakistani and Arabic people from the Middle East) and will be English speaking. There are two factors dictating the choice of these particular groups. Firstly, the current proposal tries to explore the impact of highly diverse cultures, in the light of what the literature of the subject says about pain tolerance among common cultural backgrounds, which is not statistically significant (Gupta, et al,. 2009). Secondly, the majority of population in England comes from the cultures mentioned above; therefore, it would help us if we could recruit a sufficient number of participants from each group as it might affect the generalization of research results. The data shows that white British citizens represent around 91% of the population, black people and minority ethnic groups make up 9.1% of the total population in England, out of which British-Asian residents form the largest group (4.6%), followed by British-Black (2.3%), ‘mixed’ (1.3%), and Chinese (0.9%) (Arts Council England, 2003). We will be using a mixed method (qualitative and quantitative) to explore accurately the relationships and the impact of the mentioned variables.
The numbers of people who suffer from cancer are increasing each day, adding to the already high figures. Therefore, we need to use a recruitment scale adapted to the situation for that given moment in order to recruit a sufficient number of respondents. Finally, we need to recruit from different ethnic groups and it must be a representative number of respondents so that the cultural impact is measured accurately too.
The sampling method will be randomized: each member of a subset has an equal probability of being chosen. Another advantage of random sampling is unbiased statistics. The importance of an unbiased statistics is that when the sample size increases, the statistics from the sample indicate the true values of the population, or that it is representative of the population (Clark-Carter, 2010).
The current study will use a mixed method. As it was mentioned before, this method is suitable for our study as it will involve using questionnaires and making interviews to collect sufficient data from the participants. In order to analyse and demonstrate two different types of data we need to use quantitative and qualitative methods together.
The data will be collected through two questionnaires: the Chronic Pain Acceptance Questionnaire (CPAQ, a 20-item inventory designed to measure pain acceptance) and the Benefit Finding Scale (BFS, a 30-item form measuring beneficial points from the specific process).
The former (CPAQ) consists of two subscales: pain willingness and activity engagement (McCracken, Vowles, Eccleston, 2004). As for the latter, the original scale was developed by Vicki Helgeson at Carnegie Mellon University.
In order to recruit a required number of participants, an interview will have to be made with participants, and a considerable number of them will fill questionnaires. We will provide them with a package which includes questionnaires, an information sheet, a letter of invitation and a self-addressed stamped envelope. After their health check, all participants will have enough time (at least 24 hours) to decide whether they want to fill the questionnaires or not. Sending back the package will show their decision.
The Chronic Pain Acceptance Questionnaire (CPAQ):
Looking back to the beginning of the CPAQ should enable a better understanding of the development and the contents of this questionnaire. Geiser is a developer of the first version of the CPAQ in 1991; he based it on another measure known as the Acceptance and Action Questionnaire (Hayes et al., 2004).
Activity engagement, pain willingness, thought control, and chronicity were the four components of the first CPAQ, but later research and data revealed its poor internal consistency. Then the initial 31 items of CPAQ were reduced to 24 items; seven items were removed from the inventory, based on the empirical grounds. The research went on and the data from collected literature shows further problems: poor item–total correlations and restricted frequency distributions. Also, a few of the items did not show clear reference to pain, e.g. item 27 “In order for me to accept something, I have to feel good about it”. Therefore, the CPAQ has been revised and reduced from four components and 24 items to two components and 20 items (activity engagement -11 items and pain willingness - 9 items), (McCraken, 1999; McCracken, Vowlesb and Eccleston, 2004).
McCracken et al, (2004) report that the revised CPAQ appears to be the most reliable version with fully adequate internal consistency. The revised CPAQ is a 20-item inventory designed to measure pain acceptance. The CPAQ consists of two subscales: pain willingness (“experiencing pain without attempts to control or avoid it”) and activity engagement (“engagement in daily activity even in the existence of pain”). These two subscales measure acceptance and flexibility associated with chronic pain. All items are rated on a 0 “never true” to 6 “always true” scale (McCracken et al., 2004). The CPAQ scores range between 0 to 66 for activity engagement and 0 to 54 for pain willingness, the higher score for activity engagement shows greater pain acceptance and vice versa for pain willingness.
An example of a question measuring activity engagement could be: “I am getting on with the business of living no matter what my level of pain is”, and one for pain willingness: “Keeping my pain level under control takes first priority whenever I’m doing something” .
There is a large body of studies that show the reliability and validation of the CPAQ-20 with the higher Cronbach’s alpha values around “85 to 89” (Gauthier et al., 2009; McCracken et al., 2004). In their significant study Fish et al (2010) recruited 428 participants to test the validation of the CPAQ and they report that the questionnaire has a good reliability and validity.
The CPAQ-20 has been used in other languages to test its validity. Bendayan, Rosa and Blanca (2012) conducted a study with a sample of a considerable size. They recruited 315 chronic patients to test the CPAQ-VS’s validation, and the result shows that CPAQ-VS is also valid when run in Spanish. The results from the previous study support and confirm the findings from other studies (for example, see Ning, Ming, Mae and Ping, 2008; Wicksell, Olsson and Melin, 2009). Overall, the above data and studies present the CPAQ-20 as a valid and reliable measure to assess the levels of pain acceptance in patients experiencing chronic pain, including pain related to cancer.
The Benefit Finding Scale (BFS):
The Benefit Finding Scale (BFS), with its 30 items measures self-benefit derived from a specific process; it also measures positive consequences of having cancer (Tomich and Helgeson, 2004). Being diagnosed with cancer and undergoing treatment could make cancer patients experience positive and/ or negative feelings (Urcuyo et al, 2004). Having cancer may make patients feel that as well as causing problems, cancer can make contributions to their lives. This scale measures how patients feel about having cancer. The original scale was developed by Vicki Helgeson at Carnegie Mellon University, however, it has undergone some modifications over the past years.
To make it more accurate for the purposes of the studies, a few items have been added to the original scale and some items that were redundant or were left unanswered by a number of participants, or were reported as confusing have been removed. Therefore, the updated version is better adapted to measuring the cancer benefits (Carver, 2013; Antoni et al., 2001). Nevertheless, this study will employ the original scale as it is more accurate for exploring the cultural aspects. In other words, the 30 items of the original BFS will help to demonstrate and explore the current study’s primary outcomes.
The 30 items are designed to measure the beneficial points of having cancer. All the items contain possible positive statements describing how participants might feel in the processes associated with the experience of cancer.
The items cover a wide range of possible benefits of cancer, from those related to family, social relationships, life priorities, through the spiritual dimension, to career goals, better self-control, and the ability to accept circumstances (Urcuyo et al, 2004; Tomich and Helgeson, 2004). All items rated from 1 “Not at all” to 5 “Extremely” apply to the participants. To illustrate how the questionnaire is formed, here are two items from the list: No. 6 “The experience of cancer has taught me that everyone has a purpose in life” and No. 14 “The experience of cancer has helped me become more aware of the love and support available from other people”.
The BFS is a valid and reliable tool with a good internal consistency (around 0.95; see for example Antonio et al., 2000; Kim et al, 2007). The importance of this scale appears in its application: it has been used in a significant number of studies for different groups, such as adults with cancer, children, parents of patients and caregivers (Pascoe and Edvardsson, 2014; Hensler et al., 2013; Kim et al, 2007).
The Interview Script.
Interview offer a flexible form of data collection (Smith & Osborn, 2003). An interview schedule was drafted by the researcher and then reviewed by supervisor. The current proposed study will interview small number of participants from different culture backgrounds. The aim of the present interview is to find out about the culture impacts on pain acceptance and benefit finding in more detail and explore all the possible helpful elements inside the culture that each individual will demonstrate it as its strong point in dealing with pain. To explore how pain is accepted and dealt by the member of the mentioned culture backgrounds. Although it is not easy to make everybody speaks and share their experience but we hope by interviewing some of the participant we will be able to find out about any other aspects that considered particularly helpful or unhelpful in the process of facing the pain.
The interview will last 30-40 minutes, all conversation will be audio-recorded for. The interview script divided into three sections. First one is Family and social relationships, contains 4 questions. To show how the questions are formed, here is an example of item number 1. “How close are you to your family or to your culture belief system? Tell me about it”. Second section is Cultural view on illness and treatment s, contains seven questions, an example of item number 7. “Do you consider that your pain brought you good more than bad? Is there something that helps you to view pain in good way?”. Third section is Religion and spiritual groups, contains five questions an example of questions number 5. “Spirituality or faith provides some people with strength in coping with difficult times, and illness. Where do you find strength to deal with difficult situations?”.
We have reviewed different explanatory/assessment models such as Kleinman and Campbell, Giger-Davidhizar’s and Huff’s, Kagawa-Singer & Blackhall’s cultural assessment models, as result we have built our interview model that suit the purposes of the current study.
Chapter Three: Pilot study
3.1 Pilot Rational
The most common understanding about pilot study is that it should be carried out prior to the actual study. Shuttleworth (2008) defines a pilot study as “a standard scientific tool for 'soft' research, allowing scientists/researchers to conduct a preliminary analysis before committing to a full-blown study or experiment”. Therefore, it is designed to test logistics, barriers, efficiency, feasibility of recruitment, retention, assessment procedures, and implications (Leon, Davis and Kraemer, 2011; National Centre for Replacement, Refinement and Reduction of Animal in Research (NC3Rs), 2006).
This paper refers to the phase of work that could give a researcher an opportunity to learn more about the cancer pain, to remove the redundant, unrelated variables or to expand, adding links to other aspects. In other words, this pilot study is a chance to develop and improve a project for future research (the actual research that follows the pilot study) and enrich the procedures. This kind of study is like the runs test checking the design, procedures etc. (Clark-carter, 2010).
3.2 Method for the Pilot
This project hopes to recruit around 10 participants (cancer patients) from different cultural backgrounds who are consulted by the Cancer Care Centre at Salford Royal Hospital (Hop Building). All participants will be asked whether they can voluntarily fill in two types of questionnaires. This study will not focus on any specific type of cancer, or the duration of the illness because there is no evidence to support the idea that a type of cancer, the length of the disease or the time a person has suffered from pain may account for the patient’s pain acceptance (McCracken, Vowles and Eccleston, 2004). All participants will be adult (over 18), vulnerable age groups will not be involved in this study.
The sampling method will be opportunity sampling (convenience sampling), one of the most common tools used for volunteering participants. The process of recruitment may require a few steps: first of all, the study needs to obtain the approval of the University of Salford Ethical Committee and to register with the Integrated Research Application System (IRAS) which belongs to the NHS in order to access the hospital and approach cancer patients. After that a poster will be used as a recruitment method. Patients showing interest will be introduced to several papers and information such as the participant’s information sheet, letter of invitation and consent form. Once they have agreed to take part in the study, I will give them the questionnaires and allow enough time to complete them.
The project will use the quantitative method, which is reliable and not biased. Researchers use statistics to generalise the results and to discover the relationship between two variables and to test the hypotheses (Madrigal and McClain, 2012; Heiman, 2002). This single method has been chosen due to time constraints and the fact that it is going to be a pilot study only where the participants will simply be asked to fill two questionnaires.
The first questionnaire is the Chronic Pain Acceptance Questionnaire (CPAQ), a 20-item inventory designed to measure pain acceptance, with two subscales: pain willingness and activity engagement (McCracken, Vowles, Eccleston, 2004). The second one is the Benefit Finding Scale (BFS) with 30 items measuring the benefit finding from a given process. All the questionnaires will be collected through the post (the participants will receive a package including a self-addressed stamped envelope). Since this is a pilot study conducted on a small sample, its results will not be generalised for a wider population. The size of the sample does not represent the actual community (Teijlingen and Hundley, 2001).
Chapter Four: Data and it is analyses
4.1 Analysis (proposed research)
The proposed research will involve two types of data: numbers and texts (Quantitative and Qualitative), therefore we will have to use different methods to analyse this data. It is expected that 80-90% of the participants will complete and return the questionnaires and come to the interview. The reason why a high turnout is predicted is that firstly, the participation is voluntary, without external pressure, and secondly, the respondents will be examined by health specialists before being interviewed and answering the questionnaires. The assumption is that if they appear for a health check, they will probably take the next steps as well.
Among those who were invited, however, there might be participants who would have their own reasons not to come or would face obstacles preventing them from engaging in the study, such as severity of illness or family problems etc.
By collecting all the necessary data from the questionnaires (CPAQ- 20 items and BFS- 30 items) we will introduce a number of descriptive (mean + standard deviation) and inferential analyses (correlations design) to find the relationship between pain acceptance and benefit finding. The Analysis of Variance (ANOVA) will be applied to analyse data. ANOVA will be used to find the impact of cultural differences on pain acceptance and benefit finding in different groups. ANOVA will explain which group or ethnic background will have higher levels of pain acceptance, as well as which cultural background could condition its members to have a more positive perspective, or a mind-set that allows them to see advantages even in traumatic situations. The package SPSS Statistics will be employed to analyse all the data.
Half of the data will be collected through interviews, believed to be the only way of understanding the real feeling of the participants (Check & Schutt, 2012). While interviewing participants, texts and notes will be used. It is critical to understand the elements which an individual finds helpful while facing pain. Through the interview and analysis of the words of the participants, we will try to demonstrate the cultural barriers or/and the cultural support in relation to health, pain and positivity.
The main consideration for ethics or for the procedure of ethical approval is to prevent participants from harm or risks. The British Psychological Society (2010) defines the risk as “the potential physical or psychological harm, discomfort or stress to human participants that a research project may generate” . We do not expect to generate any bad experiences for the patients. We only introduce two questionnaires for the pilot study, and the questionnaires and an interview for the actual study. Neither the questionnaires nor the interview include any sensitive questions. In case any of the participants have concerns regarding their condition, we will cooperate with a support team for consultation.
Another important point is that all research participants will be provided with a research code to ensure that their identity remains anonymous and confidential. The collected questionnaires will be coded, anonymous and stored in a locked cabinet that only the researcher has access to. All the information taken from the questionnaires will be stored in the researcher’s computer protected by password. The researcher and his supervisor are the only two people who will have access to the participants’ answers. Once the study has been finished, data will be kept for three years, following the University guidelines. The identity of the participants will not be revealed and the data will not be used for any more purposes.
For this proposed research we wish to conduct a pilot study prior to the actual study and we applied for the ethical approval required in order to be able to work with cancer patients. We have applied for two types of ethical approval: one through the Salford Ethical Committee and another one through the Integrates Research Application System (IRAS) which belongs to the NHS. The application to the first body has been submitted. However, the second (IRAS) application has a lot of requirements which, due to the lack of time and resources, cannot be fully met. Therefore, the submission of the IRAS application has not been successful.
Although, the current proposal does not present any collected data to build an argument or examine the findings in this section, it will discuss the possible outcomes and limitations that might occur when the actual study is conducted. The evidence and data from other studies referred to in this paper indicate that ethnic background affects patients when it comes to pain acceptance, pain tolerance and an individual approach to dealing with pain. Thus, the level of pain acceptance and response to the pain differ depending on the patient’s cultural beliefs (Campbell, Edwards and Fillingim, 2005). In this regard we predict that participants will score differently in the level of pain acceptance. A number of researchers have reported that cultural background could affect patients’ ways of thinking and their behaviour (Good et al., 1995; Free, 2002).
Therefore, we could say that pain and illness are viewed in the context of cultural beliefs, finding positive or negative aspects of their condition could be partially affected by the patient’s common sense or a norm typically applied in similar circumstances in their culture or ethnic group.
Benefit finding is usually associated with two main factors: social support and optimism (Pascoe & Edvardsson, 2013). As it has been highlighted in previous paragraphs culture determines both the level of social support and the way its members interact with each other. It might even be right to say that to some extent it is predictable that benefit finding is affected by cultural environment, and that social relationships within the culture would play an important role in providing the patient with enough support. Still, further studies and work to support this statement with empirical data are necessary.
The important point is that if it was found that an individual from a specific firmly integrated culture performed better in finding benefits, then it would be possible to use these findings in other cultural contexts. That is, it would be justified to try to develop similar level of social relations among family members and in a wider community in a culture which lacks this tight integration. If this idea was to be represented through specific participants, it might be suggested that Chinese people would score higher in benefit finding than the English whose social support and relationships are not nearly as strong as those observed among the members of the Chinese community (Kung, 2009). In addition, traditionally, the Chinese try not to reveal their pain and stay silent if aching. Not expressing the feeling of pain becomes their pride (Carteret, 2010; Munoz and Lukmann, 2005).
The proposed study will examine the English, the Pakistani, the Chinese and the Arabs from the Middle Eastern cultural backgrounds to examine how their culture impacts on pain and benefit finding in cancer patients.
We predict that individuals from the Middle East will differ from English patients when it comes to accepting pain. First of all, their cultures are rather distant, secondly religion does not seem to play the same role in these societies. People coming from the Middle East tend to be more religious. Whereas it does not mean that it is their religion that specifically enables them to accept the pain, beliefs connected with supernatural power seem to give patients strength that makes them show higher levels of pain acceptance (see for example Callister, 2003).
The proposed study hopes to demonstrate valuable information on cancer patients and how they manage their pain. In this scenario we envision that a health professional would be informed about how pain is viewed in the cultures that their patients come from and take this into account in order to provide better treatment. At the same time, it needs to be said that even though cultural background is important for pain management it cannot be denied that individual differences can exist within cultural groups. Thus, apart from considering the paatient’s culture, health professionals and researchers should not ignore patient’s individual beliefs, values, coping strategies, and life experiences (Callister, 2003).
Another significant point is that this study could provide enough evidence to encourage cancer patients to consider pain acceptance and benefit finding as advantageous in their condition. The beneficial results of accepting pain accounted for in this paper include a better quality of life, increased ability to manage one’s work and life on a daily basis. For the health authorities this approach might be useful and interesting, partly because of its low budget. Knowing patients’ cultural backgrounds could make the treatment easier and shorter, contributing to better outcomes.
As we have mentioned in the previous paragraph that Aldrich and Eccleston (2000) argue that the meaning of pain differs from one person to another depending on their cultural beliefs. Knowing how pain is interpreted by the culture of a particular patient may become crucial to the coping mechanism in dealing with pain. In other words, viewing the meaning of pain from the patient’s cultural perspective would help health professionals to manage the patient’s pain more easily.
It could be said that pain management is a package which includes health professionals, patients and culture, as people from different backgrounds or environments would have different views, various perceptions of pain and diverse medication preferences.
In every study there are some limitations and barriers. The majority of data and evidence specified in this paper in order to support its hypothesis did not originally refer to cancer patients or to cancer pain. Some of the studies were conducted to examine other types of chronic pain, others tested artificial sensations, such as heat pain, cold pressure pain and ischemic pain. Therefore, the degree to which these findings can be applied to cancer patients is unknown. That is why we believe that conducting this study on cancer patients would present a clearer idea and more reliable outcomes.
Another barrier might be gender inequality: even though we do not seek here to learn about the differences between males and females, the evidence shows that gender plays a role in the level of pain acceptance.
When it comes to the size of the sample group, it has received a considerable critical attention. Although we suppose that there will not be major obstacles in choosing the participants for the sample group (the number of cancer patients is growing on a daily basis), having a substantial number of cancer patients might require a big size of the sample in order to represent the actual community, which means additional work and complications. The size of sample affects the result and its frame of generalisation. Therefore, recruiting participants and the sample size must be accurate and sufficient.
Acknowledging these limitations and barriers, would give us an opportunity to work more precisely at the time of conducting the actual study. In other words, specifying these points now would encourage us to employ better strategies to deal with the mentioned barriers, and thus have valid and reliable results.
The main goal of the current paper is to set up a proposed study to determine the relationship between pain acceptance and benefit finding in cancer patients; it also seeks to specify the impact of culture on both variables. However, as the study has not yet been conducted we do not have sufficient evidence and data to state the outcome.
The data and studies that have been incorporated into this paper let us conclude that pain acceptance and benefit finding significantly contribute to increasing the level of quality of life and improving patients’ functioning on a daily basis. Based on the findings from other studies mentioned in this work we could also say that cultural background plays a significant role in patients’ willingness to accept the pain or to find benefits in their situation.
There are some aspects that need further research, that is, the role of gender in pain acceptance and benefit finding. We still do not know whether male or female cancer patients could be better predisposed to cope with their situation. In addition, further examination is necessary to find out about all the available benefit finding instruments and the extent to which they produce valid, reliable and comparable data.
Finally, what should be highlighted is that even though culture plays a significant role in shaping human beings, the way they define, perceive and control pain, suffering and its perception, acceptance and control are inner and subjective to the person who experiences them.
4.5 Time management
After receiving the ethical approval, the pilot study will only last two months. The actual study, however, will be longer, as it will recruit a greater number of participants, and will require collecting questionnaires and organising interviews. After that all the collected data will have to be analysed.
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Conducting a study at this level requires considerable effort, time and financial resources. First of all, receiving the ethical approval and the recruitment process will take a long time and instant consultants from an experienced person in this field. Secondly, we need a cancer specialist to examine the patients. Hiring a cancer specialist for participants’ health check to ensure that all the respondents are in a suitable condition to take part in the study can also be costly. All the respondents involved in the interview will be rewarded for their time and effort, another aspect of the research that will require an allocation of funds. Another cost of the study is questionnaire packs, containing all the necessary information for the participants and a self-addressed stamped envelope.
The value of research or other work does not become apparent until it is made public. We believe that with effective dissemination the findings of our research will reach a wider population and raise their awareness. Therefore, we hope to disseminate the current study and its findings and recommendations to as wide an audience as possible. The dissemination plan for this study will be followed from the beginning of the project to its very end.
All participants of the research will be given a report on the findings, and will be encouraged to comment on them. They will also be the group who will have the right to access the results of the study first, before other people.
The dissemination of the project will also follow the points stated below:
- All participants will have a chance to get a copy of the executive summary of the report on the study (abstract). It will be optional, depending on the respondent’s willingness to obtain it and providing the research team with contact details.
- Upon completing the study, academic and scientific journals will be approached with the request to publish it. Then, it will available for wider readership, including the electronic access.
- There is no specific group that will be targeted in order to raise their awareness of the subject matter. The research team wishes that everybody can make use of the study and be satisfied. Using Mike Jones’ words, we wish to attract “any group or individual who can affect, or be affected by the achievement of the … objectives” of the project, or can influence these objectives (Pell & Rees, 2002).
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