Original Article The Influence of Chronic Pain on the Daily Lives of Underprivileged South Africans Martjie de Villiers, MTech,* Johanna Elizabeth Maree, DCur,† and Corrien van Belkum, PhD* ---
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From the *Adelaide Tambo School of Nursing Science, Tshwane University of Technology, Pretoria, South Africa; † Department of Nursing Education, University of the Witwatersrand, Johannesburg, South Africa. Address correspondence to Prof. Johanna Elizabeth Maree, DCur, University of the Witwatersrand, Johannesburg, Gauteng 2193, South Africa. E-mail: [email protected] Received January 29, 2014; Revised April 29, 2014; Accepted May 1, 2014. 1524-9042/$36.00 Ó 2015 by the American Society for Pain Management Nursing http://dx.doi.org/10.1016/ j.pmn.2014.05.001
ABSTRACT:
Chronic pain is a major public health problem that changes lives and has devastating consequences for the person experiencing the pain, the family, and society. Living with chronic pain is not easy, especially in South Africa where the public health care system, serving 80% of the population, fails people suffering from chronic pain. The purpose of the study was to explore how experiencing chronic pain influenced the daily lives of underprivileged patients receiving nursing care at the palliative care clinic serving a resource-poor community in Tshwane, South Africa. A qualitative descriptive phenomenologic design was selected for the study. Nine purposively selected community members, registered as patients at the palliative care clinic and who suffered chronic pain, participated in the study. In-depth interviews were conducted and Tesch’s coding process was used to analyze the data. Data gathering and analysis were done concurrently to determine data saturation. Four themes arose from the data: pain as a multidimensional experience, the influence of pain on physical activities, the psychosocial influence of pain, and the influence of pain on spirituality. Participants’ experience of pain tells of severe suffering that hindered them in performing activities of daily living. Participants were confronted with total pain and were caught in a vicious circle where pain was responsible for severe suffering and their suffering added to their pain. However, strong religious beliefs improved pain and gave hope for the future. Ó 2015 by the American Society for Pain Management Nursing Chronic pain is a major public health problem that changes lives and has devastating consequences for the person experiencing the pain, the family, and society. Chronic pain influences people’s well-being as it decreases quality of life, limits activity, and reduces functional capacity, the ability to maintain an independent lifestyle, productivity, and social relationships and is associated with mood and anxiety disorders (Igumbor, Puoane, Gansky, & Plesh, 2011; Tsang et al., 2008). Chronic pain also influences society as it escalates the financial burden caused by the increased use of health services and Pain Management Nursing, Vol 16, No 2 (April), 2015: pp 96-104
Influence of Chronic Pain on the Lives of Underprivileged South Africans
medication, loss of productivity, absenteeism from work, and early retirement (Igumbor et al., 2011). The epidemiology of pain has not been studied as much as other diseases because the complex pathophysiology and psychology of pain, the diversity of pain conditions, and practical problems of conducting such research in the community and in health care settings complicate such studies (Gerdle, Bj€ ork, Henriksson, & Bengtsson, 2004). Estimates of the prevalence of chronic pain in the general population vary according to the population studied and the definition of chronic pain applied (Igumbor et al., 2011). Tsang et al. (2008) found that the prevalence of chronic pain conditions is higher in the developing world (41.1%) compared with developed countries (37.3%). According to Igumbor et al. (2011), the prevalence of chronic pain was previously estimated as 35.5% in the United States, 35.1% in Finland, 31.4% in Sweden, 22.1% in Australia, 20.2% in Denmark, and as high as 46% in Israel. Little is known about the incidence of chronic pain in Africa because no studies addressing this issue seem to be available. It is also not clear what the prevalence of chronic pain is in South Africa because few countrywide studies could be found. Igumbor et al. (2011), in a study conducted in a township in South Africa’s Eastern Cape region, found a chronic pain prevalence of 38.5%, which is slightly lower than the 41.5% Rauf, Meyer, Marcus, and Becker (2013) found in persons attending four primary health clinics in South West Tshwane. This prevalence is also lower than the 87.2% prevalence found in people living with HIV and AIDS attending a primary health clinic in Tshwane (Maree, Wright, & Makua, 2013). Additionally, Maree and Wright (2008) found that 77% of cancer patients receiving palliative anticancer treatment suffer pain. Various health problems are linked to chronic pain, of which cancer is probably the most wellknown. HIV and AIDS, a condition affecting 5.1 million South Africans (UNAIDS, 2013), is notorious for pain because people suffering from HIV experience pain throughout the trajectory of the disease and an expected 80% with advanced disease will suffer severe pain (Harding, Powell, Kiyange, Downing, & MwangiPowell, 2010). Progressive degenerative conditions such as low back pain, a condition approximately 32% of adults living in Africa suffer from (Louw, Morris, & Grimmer-Somers, 2007), osteoarthritis, and rheumatoid arthritis are also responsible for chronic pain (World Health Organization [WHO], 2008). However, it seems as if chronic pain can be associated with any chronic disease, and being female, older than 50 years, and widowed or divorced, and having low socioeconomic
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status and unemployment increase the risk (Igumbor et al., 2011; Rauf et al., 2013; Tsang et al., 2008). Living with chronic pain is not easy, especially in South Africa where the public health care system, serving 80% of the population (SouthAfrica.info, 2012), fails people suffering from chronic pain. Pain is poorly managed not only at inpatient and outpatient cancer care settings (Beck & Falkson, 2001; Maree & Wright, 2008) but also at the district level at the nurse-lead primary health clinics (Maree et al, 2013). These clinics, according to the Declaration of AlmaAta (International Conference on Primary Health Care, 1978), address the main health problems in the community through the provision of promotive, preventive, curative, and rehabilitative services. Lack of resources plagues health care services (Frohlich & Shipton, 2007) and lack of knowledge of pain and pain management (Beck & Falkson, 2001; Maree, 2009; Maree et al., 2013) are major barriers to effective pain relief. In addition, South African studies (Igumbor et al., 2011; Maree et al., 2013; Rauf et al., 2013) found people visiting primary health clinics mostly experience moderate pain that might require either a weak opioid (Harding et al., 2010; World Health Organization, n.d.) or amitriptyline as first-line drugs for neuropathic pain (Chetty et al., 2012). Drugs such as those mentioned earlier can only be prescribed by doctors, leaving nurses at primary health clinics unable to initiate appropriate drug treatment (The National Department of Health, 2008). Medical practitioners, however, only visit primary health clinics to support nurses and usually review patients referred to them during these visits (Couper, Malete, Tumbo, & Hugo, 2003). Nkosi, Horwood, Vermaak, and Cosser (2009), in a study conducted in KwaZulu-Natal involving 58 primary health clinics, found that doctors’ visits to these clinics ranged from none (8 clinics) to twice weekly (2 clinics), weekly (17 clinics), every 2 weeks (20 clinics), and monthly (11 clinics). This pattern is in the best interest of neither the patient nor the nursing practice because failure to provide adequate pain relief when a patient has the right to it is considered moral negligence (Hunter, 2000). In 2008 the Adelaide Tambo School of Nursing Science, through the university-based Nursing Education South Africa (UNEDSA) program, was awarded a grant from the Atlantic Philanthropies to establish a Nursing Community of Practice for teaching and learning through community service in a resource-poor community in Tshwane. This program, among others, included a palliative care service brought to the community twice a week by means of mobile clinics. As supported by the World Health Organization’s definition of palliative care (WHO, 2013), this service was initially
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planned to render nursing care to patients suffering from end-of-life diseases (Maree & Ferns, 2008). This, however, was not possible because patients suffering debilitating consequences throughout the disease trajectory of various chronic diseases were also referred to the palliative care clinic. During the first 8 months, 48 patients were referred to the clinic. Most (54.2%) said they suffered from HIV and AIDS, 33% indicated they had tuberculosis, 23% hypertension, and 18.8% rheumatoid arthritis; 8.3% suffered cerebrovascular incidents, and the rest had various health problems including cancer, diabetes, and asthma. After conducting a record review, it was found that 43 of the 48 (89.6%) patients suffered from chronic pain. Of that 89.6%, 11.6% experienced mild pain, 39.5% moderate pain, and 48.8% severe pain (De Villiers, 2013).
PURPOSE OF THE STUDY Mackrodt (2005) emphasizes the need to understand the pain experience of each person because pain is a universal and complex phenomenon, and each individual reacts to his or her pain in a complex manner and expresses the pain experience differently. Farrer (2001) adds that symptoms are multifaceted and if the social, spiritual, emotional, and related physical dimensions are not considered, the symptom might be undermanaged or worsened. Optimal pain management, a professional responsibility toward the patient, is only possible when patients’ experience of pain is fully understood. The available South African literature concentrates on the incidence and management of chronic pain, and no qualitative work focusing on how this experience influences the daily lives of people could be found. The present study fills this knowledge gap as it explores how chronic pain influenced the daily lives of underprivileged patients receiving nursing care at a palliative care clinic serving a resource-poor community in Tshwane, South Africa.
METHODS The Study A qualitative, descriptive phenomenologic design, underpinned by the philosophy of Edmund Husserl, was selected for this study because, according to McCance and Mcilfatrick (2008), descriptive phenomenology allows researchers to uncover the essence of phenomena important to nursing practice. In line with the Husserlian phenomenology (Lopez & Willis, 2004), the researchers used bracketing and consciously attempted to put aside their own assumptions to enable a true reflection of the experiences of
participants. To achieve this, the researchers followed the guidelines of Ahern (1999) and clarified their value systems, acknowledged the areas of known subjectivity and potential role conflict, and attempted to recognize feelings that could indicate a lack of neutrality. The interests of the various gatekeepers, namely the university and the South African Nursing Council, and the extent to which they would support the project were considered. Additionally, the literature review was only conducted after the data were analyzed to avoid biasing the researchers’ thoughts. Participants The participants in this study were nine purposively selected community members, registered as patients at the palliative care clinic and who suffered chronic pain. The participants were underprivileged and lived in an informal settlement in a township forming part of the greater city of Tshwane. Six of the participants were female and all participants could speak and understand basic English. The ages of participants’ ranged from 28 to 77 years; four were single, four widowed, and one divorced. Three of the participants were functionally illiterate, and the literacy level of one was unknown. Four participants were on pension and received a government old age pension; five were unemployed, with one receiving a disability grant and two a state child allowance; two had no personal income. Three of the participants lived in brick houses and the others lived in one- or two-room corrugated steel dwellings. Two of the three participants living in brick houses had flush toilets and running water inside their homes, whereas the rest had a tap and either a flush or pit latrine in the yard. Although some had access to electricity, they could not afford to buy electricity coupons. Except for experiencing chronic pain, four participants said they suffered from HIV and AIDS, four from rheumatoid arthritis, four from hypertension, two from diabetes, and two from osteoarthritis; one participant indicated she suffered from tuberculosis. All participants except for one reported suffering from more than one disease. The first author, practicing as nurse at the palliative care clinic, selected participants who were considered to be typical of the population (LoBiondo-Wood & Haber, 2010). Data Collection and Analyses A total of nine in-depth interviews, in English and audiotaped, were conducted with the participants in their homes. Each interview lasted approximately 1 hour. A community health worker, conversant in the local languages, assisted with language issues when they arose. An opening question of ‘‘Please tell me how the pain influences your daily life?’’ was asked.
Influence of Chronic Pain on the Lives of Underprivileged South Africans
Probes and prompting questions (Polit & Beck, 2010) were used to encourage participants to expand on their experiences. The first interview pretested the question and the participants struggled to understand the word influence. For the second and following interviews the Sepedi word kgoroletsa, meaning ‘‘hinder,’’ was used instead of influence. The data gathered during each interview were summarized and verified with the participants to be true and correctly understood. The data obtained during the first interview was included in the study. Data gathering and data analysis were done concurrently to determine data saturation. Tesch’s coding process (Bothma, Greeff, Mulaudzi, & Wright, 2013) was used to analyze the data. Interviews were transcribed verbatim and additional data included, such as a sigh, laughter, or crying, in the transcription to enrich the data. Field notes were typed and attached to the interview. Transcriptions were read through several times. Codes were developed based on the information provided by the participants, and the emerging information was entered into an Excel spreadsheet. Different colors highlighted the various emerging information, which was put together as themes. All three authors were involved in the data analyses. The categories and themes arising were debated, discussed, and reduced until consensus was reached. Trustworthiness Guba’s four trustworthiness constructs, credibility, transferability, dependability, and confirmability (Shenton, 2004) were applied to enhance the trustworthiness of the findings. Credibility was enhanced by using a wellestablished research method, submitting the research proposal to peer review, triangulation, and member checks. Triangulation was achieved by including a wide range of participants differing in terms of health problems, income and sources of income, living conditions, responsibilities, and age. In addition, a detailed description of the findings was presented and previous research findings were examined. Transferability was enhanced by providing sufficient contextual information to enable the readers to make such transfers. Describing the research design and implementation and the operational detail of the data gathering added to dependability. Lastly, bracketing and triangulation were used as confirmability strategies. Ethical Considerations The ethical guidelines outlined by Brink (2007) were followed. Approval to conduct the study was obtained from the university, the Research Ethics Committee of
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the university, and the manager of UNEDSA program. The community health worker who assisted with language issues signed a confidentiality agreement. Participants signed informed consent after the purpose of the study and their rights had been explained to them. They also received an information leaflet. Appointments were made with the participants and interviews were conducted in the privacy of their homes, with only the first author and interpreter present. By numbering the transcribed interviews sequentially and erasing the voice recordings after the interviews were transcribed, confidentiality was maintained. Data were only gathered until saturated.
FINDINGS Four themes arose from the data: pain as a multidimensional experience, the influence of pain on physical activities, the psychosocial influence of pain, and the influence of pain on spirituality. Pain as a Multidimensional Experience Pain was experienced as sadness. Although participants experienced pain in various parts of their bodies and suffered from multifocal pain, all experienced pain as ‘‘pain of the heart.’’ The sadness was so overwhelming that physical pain was not experienced when the heartache was severe. One participant said, ‘‘The pain is all over my body, but it stretches right into my heart,’’ and another explained her pain this way: ‘‘It is too painful to me. It is painful inside [hand on her heart] to me to feel this pain.’’ Pain also increased with sadness, described by saying, ‘‘When I feel sad, the pain becomes worse.’’ Stigmatization added to the sadness. One participant explained, ‘‘It is because I am sick, they laugh at me. It is painful. It makes me sad.’’ Physical pain as well as ‘‘pain of the heart’’ disturbed participants’ sleep, resulting in them being awake and thinking. Participants said, ‘‘Sometimes I do not sleep because of the pain. It is very painful, not just a little bit, a lot. Sometimes I sit through the night thinking. I talk to the heart because my heart is also aching..’’ ‘‘But if I am sleeping and I feel this pain it is when I have lots of periods inside my mind.’’ Being physically active or simply standing was painful. Although activity caused pain, it also eased it, especially for those suffering from arthritis. Physical pain was described as follows: ‘‘The pain is because of the arthritis..These legs, they did not want to walk, they did not have any strength.when I want to stand alone, then the pain starts.the strong pain.’’ Pain was also linked to other problems such as
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weakness and fatigue. One participant described the link between pain and weakness as follows, ‘‘.and even to stand for a long time.I won’t.it would be too difficult to me. I can stand but I will feel that I am getting tired.’’ Another said, ‘‘The pain makes me weak.’’ Although the severity of pain experienced varied from day to day, pain was a daily experience, as illustrated by this quote: ‘‘The pain is always here, since I know that I have.since I know that I have it, it has not go, it is always here.’’ Participants needed to plan their days according to their pain levels, as well as ensuring the completion of certain tasks before the pain became too severe during the course of the day. One participant explained, ‘‘I cook early before the pain starts. I must eat, I must take my tablets. The pain becomes worse as the day progresses.’’
The Influence of Pain on Physical Activities Experiencing pain deterred the physical activities of the participants. At times, the pain would be so severe they could not perform any physical activities, as related by one participant: ‘‘If I wake up in the morning and I hear the pain then I sit down for a while and wait for the pain to go, if the pain is not going anywhere, I sit the whole day.’’ Participants were also restricted to areas in and around the house, resulting in them doing nothing except sitting: ‘‘If I have the pain I am not able to do anything.’’ Participants who were able to be more active continued with their activities until the pain became too unbearable. One participant explained, ‘‘I do the gardening, when I see it is difficult, then I leave it like that.’’ Participants forced themselves to continue their daily activities. Despite the pain, they still walked a distance over rough terrain, in pain, to use a latrine outside their homes and walk the distance to collect their medication and pension. One participant explained the difficulty of walking to the latrine as follows: ‘‘I cannot walk, I just walk a little bit with the crutches. I can walk to the toilet, I just force.’’ Another participant explained her challenges: ‘‘I struggle to walk, I can’t walk far. I even struggled to collect my pension because I could not walk that far.’’ Most participants had to take care of their families, which included their grandchildren. One participant explained how difficult it was to take care of her children: ‘‘Even to wash is too bad for me; I can wash; now sometimes I was trying to wash whole washing for my children, now I choose. I take washing for the small one and mine only, this one and the other one, I leave them, each and every one can wash himself.’’
Participants also had to continue performing strenuous physical activities. One participant described how painful it was to perform the available temporary work: ‘‘You see as now we have a little job for the government to chop the., that field, it is too painful. It is difficult for me, but because I am suffering, I am doing the job.’’ Gardening was also affected by their pain experience and could either not be done, or done only when the pain was not so severe. A participant described how her pain experience influenced her ability to provide for herself: ‘‘Sometimes the pain causes me not to go to the garden. This makes me sad, because if I can’t plant, I cannot eat.’’ Experiencing pain also influenced basic hygiene, especially participants who had no access to a tap and latrine in their dwelling or house. One participant used his crutch as a support in his effort to collect water to enable him to wash: ‘‘I take the small bucket with a handle, then I put it over the handle of the crutch, then I bring the water, little bit, little bit at a time, until I have enough.’’ Having a bath became a problem and some participants had to depend on others to assist. One participant described how she depended on her mother by saying, ‘‘Sometimes I can bath myself, but sometimes I cannot bath and my mother helps me.’’ The Psychosocial Influence of Pain Pain was experienced as the cause of poverty as it restricted them from working and earning an income. They wished to be healthy and return to work because being unable to generate an income caused great despair. One participant described the situation by saying, ‘‘I can’t work. For my work I must be able to walk. I can’t go to my work anymore. My dad is not working. I don’t have a mother anymore. It gives me big problems.’’ Another participant said, ‘‘Total, total not able to work.up to now I have been praying, if I can be healthy, I will look for work.if I can be healthy I will go to work, I am still strong.’’ Some participants had to rely on the kindness of the members of the community to provide them with food: ‘‘I eat. The people, when they come here, they bring me food.’’ Despite severe pain, some participants still needed to provide for their families. One participant with young children described the needs of her children and herself by saying, ‘‘Because these children they are too young. It is me who must get a job to work for them. They are looking for more to eat. if I go and lie down no one is going to give them food. That when I say that maybe sometime he [the father of the children] can give me R200 (25 USD) he can have others to give them but then he forget about me here because I am ill.’’
Influence of Chronic Pain on the Lives of Underprivileged South Africans
As a result of poverty and the lack of knowledge with regard to disease processes, experiencing pain forced participants to think and worry about the future, about what may happen and who would care for them. One participant described her concerns as follows: ‘‘It [pain] makes me confused. It’s been a while now.I.I have been sick for a long time now, it’s been a few years now.’’ Participants were also worried about their children as reflected by this quote: ‘‘I think who is going to clean here and who is going to take care of them. And then because I am having a pain, there is no one here to help us.’’ Pain caused participants to think about their illness and the realization they might die. One participant wondered why dying was a reality for her and not for others by saying, ‘‘When I see other people walking, I wonder why me? I can only sit on the bed.’’ Some wondered who would take care of them and the family they leave behind, expressed as follows: ‘‘I think maybe because this pain is like painful, maybe I am going to die. I feel troubled, I feel sad and I feel trouble and I ask myself if I die my children will suffer,’’ and, ‘‘I wonder, when I feel like this, who is going to take care of me?’’ Experiencing pain resulted in social isolation. Participants felt isolated because there was no one to help them. One participant explained how her pain adds to her social isolation by saying, ‘‘The people they come who come.They are few. This time and that time, they do come. They must come and see how I am doing.Sometimes, I visit friends, I don’t hear the pain. But when I get there, I just sit, then the pain starts, then it is difficult to get there.I struggle. I am.I am.I am alone.during the day.’’ Some days when the pain was so severe, participants isolated themselves: ‘‘Sometimes I feel like not talking to people because of the pain.’’ Even though participants felt isolated and isolated themselves, they remained dependent on others for help. One participant said, ‘‘As she is my child, they see that eh, they can do the job for, for me, as I am there, I’m their mother.they are helping.because they see that I am ill, actually they know that I am ill.’’ Another participant had to pay someone to assist her—something she could not afford. She said, ‘‘Others must help me when I go and buy groceries, they must help me carry the bags. I must pay them, they do not do it for free..’’ The pain experience also resulted in loss of independence. Because participants became dependent on others, they felt worthless, not like other people, and therefore did not belong. Being dependent and feelings related to dependency were described as follows: ‘‘I feel ashamed. I feel that I am whiny. But I have to ask them.’’ ‘‘I feel like I am nothing, because
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I don’t belong to.the other peoples.I don’t look like the other people, because I see each and everybody.she is happy.let’s take maybe I have meet with them, they are happy. You see even to wake up here is too difficult to me.they can jump.I can jump but not jumping like the times I was jumping.I feel pain.’’ All participants experienced negative emotions such as anger, shame, and bitterness. Two participants expressed their anger by saying, ‘‘I become angry with myself when the pain begins. I think to myself why I brought this over myself?’’ and ‘‘I become angry.at the children, when they do not do the right things as I would like them to do. I also become angry with the pain, but.what will I do, when the pain comes, it comes.’’ Bitterness was described: ‘‘My heart is.is bitter.’’ Having pain in combination with HIV and AIDS also led to being ashamed. ‘‘I feel ashamed, because of the pain and because of the disease.’’ All participants found themselves in a constant battle between forcing themselves to continue with a life with pain and succumbing to the pain. Sometimes pain won and they found it difficult to motivate themselves to start the day. ‘‘I struggle to get myself ready. I struggle to feel that I have energy to do the work that I am used to do.’’ ’’Sometimes the pain causes me to feel that I do not want to do anything, I must just sit, I must do nothing.’’ Participants, however, expressed that talking about their pain and their feelings gave them relief and strength. One participant said, ‘‘It helps me [to speak about the pain] I think if when I am with people we talk with the disease, it gives me strength.’’ Another participant felt meeting the primary researcher gave her the opportunity to talk to someone who would listen. She said, ‘‘No, when I talk to you I feel better. But there are other things, because, I haven’t found the nurses who sat with me and talked to me. So, now I have found you, you sit with me and talk with me, I feel better, much better.’’ The Influence of Pain on Spirituality God and faith played a very important role in the daily lives of some participants. Their belief in a higher being was a constant factor in their lives and a source of hope. One participant said, ‘‘Hmm, I am praying because.if maybe I was not praying maybe I can’t get nothing in the house, because I know God is with me. I haven’t sleep with the stomach that is empty. Always I am eating’’; another added, ‘‘Hmm.the pain of the heart is that one that I can say I must not match with that one for the body because this one for the heart I can say God He will help me or she will help me and then this one for here [hand on the back] is that one that makes me to worry and then I must get help to
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the sisters or the doctors.’’ Most participants even experienced an improvement in pain just by praying and believing. A participant explained, ‘‘Now God is there for me. Always when I feel sick, I talk with Him, then He hears me, He helps me a little, then the pain goes away.’’ Another said, ‘‘Just to pray makes me feel better.’’ Pain also hindered religious practices and some participants struggled to attend church, resulting in them having to find other alternatives to fellowship. Not being able to walk the distance to the church was a barrier to religious practices. One participant said, ‘‘I can’t go to church, I cannot walk that far. It makes me sad. It is pleasurable to fellowship with others. Now I only listen to church on the radio.’’ Although the belief is strong and enhanced through experiencing pain, participants could not help but question whether or not their prayers were heard. One participant questioned the answering of her prayers by saying, ‘‘Hmmm, sometimes I’m thinking that maybe I am not praying very well, why this pain not goes away. God does not see me that I am suffering with this pain?’’
DISCUSSION The study provides evidence that participants experienced total pain, a concept originating from the work of Cecily Saunders characterizing the multidimensional nature of the patient’s pain experience, which includes physical, psychological, social, and spiritual elements (Clark, 1999; Saunders, 1988). Harlos and MacDonald were quoted by Mehta and Chan (2008), are of the opinion that total pain can also refer to suffering, because some patients use terminology of physical pain to describe their suffering. Charmaz (1983) describe suffering caused by chronic illness as the ‘‘loss of self’’ resulting from restricted lives, social isolation, being discredited, and being a burden to others. As illustrated by quotes such as, ‘‘The pain causes me not to go to the garden,’’ ‘‘the people.they come.they are few,’’ ‘‘they laugh at me.,’’ and ‘‘others must help me.,’’ participants experienced all the elements of suffering. Adding poverty to their suffering, which has a devastating influence on the quality of life of underprivileged palliative patients (Jansen van Rensburg, Maree, & van Belkum, 2013), it is quite reasonable to say that participants suffered severely and were caught in a vicious circle where total pain was responsible for severe suffering while their suffering added to their pain. As supported by ‘‘it is the pain, it is the heart’’ and ‘‘it is painful, it makes me sad,’’ participants were unable to separate pain and sadness. Considering
the circumstances of the participants and the various different losses experienced, sadness as pain is not unexpected. Corless (2006) defines grief, a synonym of sadness, as a state of mental and physical pain experienced by the loss of a significant object, person, or part of the self. Participants experienced various losses, as illustrated by ‘‘I can’t work’’ and ‘‘if I can’t plant I cannot eat’’; participants not only lost their health, a significant part of the self, but also their ability to work and earn an income and produce food—an overpowering loss in their already impoverished lives. Corless (2006) also describes grief as noticeable in behavior such as social withdrawal, which was also part of participant’s lives. Not only did participants isolate themselves when they experienced severe pain, but their pain experience also lead to them feeling socially isolated. Not being able to walk and attend church or visit friends isolated participants even further. In the African culture, pain is not individualistic and has strong social dimensions. The mere disturbance of relationships is experienced as pain (Lubbe, 2004), which also added to their total pain. However, it should be considered that the expressions of sadness might also refer to depression related to the pain (Tsang et al., 2008). Pain prevented participants’ engagement in daily physical activities. This hindrance was expressed as ‘‘unable to do anything’’ and ‘‘I sit the whole day.’’ Participants were unable to perform tasks such as ordinary household chores. Even hygiene practices, a basic need, became a burden. Vallerand and Nowak (2009) and R aheim and H aland (2006) found the loss of ability to function physically to be a common experience of people living with chronic pain. R aheim and H aland (2006) also found that the exhaustion caused by pain can become so overwhelming that people feel unable to do anything. Iliffe et al. (2009) found that the loss of ability to engage in physical activity due to pain was significantly associated with a depressed mood. Expressions such as, ‘‘Sometimes if I feel it.I have the mind that maybe I can die’’ and ‘‘Maybe I am going to die’’ make it highly likely that participants were depressed; however, this requires further investigation before a definitive conclusion can be made. As evident from expressions such as, ‘‘These children, they are too young. If I go and lie down no one is going to give them food,’’ and ‘‘even if I have got a pain I try to work.I have to, I stay alone.,’’ some participants were forced to engage in activities of daily living, even though it was a painful struggle. Although this seems distressing, McCracken and Eccleston (2005) found that patients suffering from chronic pain who are willing to engage in activity despite of their pain can function on a healthy level.
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Although pain experience hindered the practice of religious activities, it did not influence the participants’ faith. Some still believed ‘‘God is there for me’’ and ‘‘God he will help me.’’ Wachholtz, Pearce, and Koenig (2007) suggest that people rely on their spirituality and religious faith to cope with illness. Spirituality may even have a positive outcome by reducing pain through distraction, reducing stress and acting as a form of support. Participants especially found hope and relief through prayer, as illustrated by the quote ‘‘just to pray makes me feel better.’’ Prayer has been found to be either the primary or secondary most common coping mechanism to deal with pain (Wachholtz et al., 2007), which Andersson (2008) refers to as religious coping. Spirituality can, however, have a negative impact by creating feelings of abandonment by God because of increased sensitivity to pain (Wachholtz et al., 2007). One participant did question her faith and God’s ability to hear her plea but at the same time indicated that physical pain is manageable with other mechanisms such as medication, but emotional pain is a pain only God can cure. Disbelief did not outweigh belief and the role God played, and faith in Him was constant and a source of hope. Limitations Despite the fact that all patients who experienced pain were eligible for the study, it was mainly women who participated. The findings therefore may not represent the perspective of the male population. Because of the contextual nature of the study and using a purposive sampling method, the findings of the study cannot be generalized to other palliative patients attending other health care and palliative care services
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in South Africa. Additionally, there could be more than one interpretation of the narratives because no qualitative study reflects the only true meaning. Implications for Nursing Several implications for nursing derived from the study. Nurses practicing in primary health care clinics should be empowered with knowledge and skills to assess and manage chronic pain in a holistic manner. In addition, best practice guidelines focusing on the pharmacologic and nonpharmacologic management of chronic pain in primary health care should be developed. Lastly, nursing researchers and practitioners should collaborate in developing and testing interventions aimed at improving pain outcomes for people using primary health care services.
CONCLUSIONS Participants’ experience of pain tells of severe suffering that hindered them in performing activities of daily living. Participants were confronted with total pain and were caught in a vicious circle where pain was responsible for severe suffering with their suffering adding to their pain. However, strong religious beliefs improved pain and gave hope for the future. Acknowledgments The researchers would like to thank the Atlantic Philanthropies for the funding of the community-based health services program that made this study possible.
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Gerdle, B., Bj€ ork, J., Henriksson, C., & Bengtsson, A. (2004). Prevalence of current and chronic pain and their influences upon work and healthcare-seeking: A population study. The Journal of Rheumatology, 31(7), 1399–1406. Harding, R., Powell, R. A., Kiyange, F., Downing, J., & Mwangi-Powell, F. (2010). Provision of pain- and symptomrelieving drugs for HIV/AIDS in sub-Saharan Africa. Journal of Pain and Symptom Management, 40(3), 405–415. Hunter, S. (2000). Determination of moral negligence in the context of the undermedication of pain by nurses. Nursing Ethics, 7(5), 379–391. Igumbor, E. U., Puoane, T. R., Gansky, S. A., & Plesh, O. (2011). Chronic pain in the community: A survey in a township in Mthatha, eastern cape, South Africa. Southern African Journal of Anaesthesia and Analgesia, 17(5), 329–337. Iliffe, S., Kharicha, K., Carmaciu, C., Harari, D., Swift, C., Gillman, G., & Stuck, A. E. (2009). The relationship between pain intensity and severity and depression in older people: Exploratory study. BMC Family Practice, 10(1), 54. International Conference on Primary Health Care. (1978). Declaration of Alma-Ata. Retrieved August 21, 2013, from http://www.who.int/publications/almaata_declaration_en.pdf. Jansen van Rensburg, J. J. M., Maree, J. E., & van Belkum, C. (2013). Quality of life from the perspective of the palliative care patient in a resource-poor community in South Africa. Palliative & Supportive Care, 11(1), 21–28. LoBiondo-Wood, G., & Haber, J. (2010). Nursing research: Methods and critical appraisal for evidence-based practice, (7th ed.) St Louis: Mosby. Lopez, K. A., & Willis, D. G. (2004). Descriptive versus interpretive phenomenology: Their contributions to nursing knowledge. Qualitative Health Research, 14(5), 726–735. Louw, Q. A., Morris, L. D., & Grimmer-Somers, K. (2007). The prevalence of low back pain in Africa: A systematic review. BMC Musculoskeletal Disorders, 8(1), 105. Lubbe, G. (2004). Health care for people of different faiths. In A. Tjale, & L. de Villiers (Eds.), Cultural issues in health and health care (pp. 73–105). Cape Town: Juta. Mackrodt, K. (2005). Living with pain through the eyes of the sufferer. In C. Banks, & K. Macrodt (Eds.), Chronic pain management (pp. 75–91). London: Whurr Publishers. Maree, J. (2009). An investigation into registered nurse awareness of and practice related to cancer pain. Journal of Pain Management, 3(1), 53–62. Maree, J., & Ferns, D. (2008). Community of Practice project. Project proposal. Pretoria: Tshwane University of Technology. Maree, J., & Wright, S. (2008). Palliative care: A positive outcome for cancer patients? Curationis, 31(2), 43–49. Maree, J., Wright, S., & Makua, M. (2013). The management of HIV- and AIDS-related pain in a primary health clinic in Tshwane, South Africa. Pain Management Nursing, 14(2), 94–101. McCance, T., & Mcilfatrick, S. (2008). Phenomenology. In R. Watson, H. McKenna, S. Cowman, & J. Keady (Eds.), Nursing research. Designs and methods (pp. 243–250). Edinburgh: Churchill Livingstone. McCracken, L. M., & Eccleston, C. (2005). A prospective study of acceptance of pain and patient functioning with chronic pain. Pain, 118(1), 164–169.
Mehta, A., & Chan, L. S. (2008). Understanding of the concept of ‘‘total pain’’: A prerequisite for pain control. Journal of Hospice & Palliative Nursing, 10(1), 26–32. Nkosi, P. H., Horwood, C. M., Vermaak, K., & Cosser, C. (2009). The role of doctors in provision of support for primary health care clinics in KwaZuluNatal, South Africa. South African Family Practice, 51(5), 408–412. Polit, D., & Beck, C. (2010). Essentials of nursing research. Appraising evidence for nursing practice, (7th ed.) Philadelphia: Lippincott Williams & Wilkins. R aheim, M., & H aland, W. (2006). Lived experience of chronic pain and fibromyalgia: Women’s stories from daily life. Qualitative Health Research, 16(6), 741–761. Rauf, W. N., Meyer, H., Marcus, T. S., & Becker, P. J. (2013). Prevalence of chronic pain in patients attending primary healthcare facilities in south-west Tshwane. South African Family Practice, 55(1), 85–89. Saunders, C. (1988). Spiritual pain. Journal of Palliative Care, 4(3), 29–32. Shenton, A. (2004). Strategies for ensuring trustworthiness in qualitative research projects. Education for Information, 22, 63–75. SouthAfrica.info. (2012). Health care in South Africa. Retrieved February 11, 2012, from http://www.southafrica. info/about/health/health.htm. The National Department of Health. (2008). Standard treatment guidelines and essential medicines list for South Africa. Pretoria: The National Department of Health. Tsang, A., Von Korff, M., Lee, S., Alonso, J., Karam, E., Angermeyer, M. C., Borges, G. L., Bromet, E. J., Demytteneare, K., de Girolamo, G., de Graaf, R., Gureje, O., Lepine, J. P., Haro, J. M., Levinson, D., Oakley Browne, M. A., Posada-Villa, J., Seedat, S., & Watanabe, M. (2008). Common chronic pain conditions in developed and developing countries: Gender and age differences and comorbidity with depression-anxiety disorders. The Journal of Pain, 9(10), 883–891. UNAIDS. (2013). South Africa. HIV and AIDS estimates (2012). Retrieved December 14, 2013, from http://www .unaids.org/en/regionscountries/countries/southafrica/. Vallerand, A., & Nowak, L. (2009). Chronic opioid therapy for nonmalignant pain: The patient’s perspective. Part I— Life before and after opioid therapy. Pain Management Nursing, 10(3), 165–172. Wachholtz, A. B., Pearce, M. J., & Koenig, H. (2007). Exploring the relationship between spirituality, coping, and pain. Journal of Behavioral Medicine, 30(4), 311–318. World Health Organization. (2013). WHO definition of palliative care. Retrieved April 26, 2013, from http://www .who.int/cancer/palliative/definition/en/. World Health Organization. (2008). Scoping document for WHO treatment guidelines on chronic non-malignant pain in adults. Retrieved August 16, 2013, from http://www.who. int/medicines/areas/quality_safety/Scoping_WHOGuide_ non-malignant_pain_adults.pdf. World Health Organization. (S.A.). World health organization (WHO) ladder. Retrieved August 21, 2013, from http:// www.geriatricpain.org/Content/Management/Interven tions/Documents/WHO%20ladder.pdf.
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From the *Adelaide Tambo School of Nursing Science, Tshwane University of Technology, Pretoria, South Africa; † Department of Nursing Education, University of the Witwatersrand, Johannesburg, South Africa. Address correspondence to Prof. Johanna Elizabeth Maree, DCur, University of the Witwatersrand, Johannesburg, Gauteng 2193, South Africa. E-mail: [email protected] Received January 29, 2014; Revised April 29, 2014; Accepted May 1, 2014. 1524-9042/$36.00 Ó 2015 by the American Society for Pain Management Nursing http://dx.doi.org/10.1016/ j.pmn.2014.05.001
ABSTRACT:
Chronic pain is a major public health problem that changes lives and has devastating consequences for the person experiencing the pain, the family, and society. Living with chronic pain is not easy, especially in South Africa where the public health care system, serving 80% of the population, fails people suffering from chronic pain. The purpose of the study was to explore how experiencing chronic pain influenced the daily lives of underprivileged patients receiving nursing care at the palliative care clinic serving a resource-poor community in Tshwane, South Africa. A qualitative descriptive phenomenologic design was selected for the study. Nine purposively selected community members, registered as patients at the palliative care clinic and who suffered chronic pain, participated in the study. In-depth interviews were conducted and Tesch’s coding process was used to analyze the data. Data gathering and analysis were done concurrently to determine data saturation. Four themes arose from the data: pain as a multidimensional experience, the influence of pain on physical activities, the psychosocial influence of pain, and the influence of pain on spirituality. Participants’ experience of pain tells of severe suffering that hindered them in performing activities of daily living. Participants were confronted with total pain and were caught in a vicious circle where pain was responsible for severe suffering and their suffering added to their pain. However, strong religious beliefs improved pain and gave hope for the future. Ó 2015 by the American Society for Pain Management Nursing Chronic pain is a major public health problem that changes lives and has devastating consequences for the person experiencing the pain, the family, and society. Chronic pain influences people’s well-being as it decreases quality of life, limits activity, and reduces functional capacity, the ability to maintain an independent lifestyle, productivity, and social relationships and is associated with mood and anxiety disorders (Igumbor, Puoane, Gansky, & Plesh, 2011; Tsang et al., 2008). Chronic pain also influences society as it escalates the financial burden caused by the increased use of health services and Pain Management Nursing, Vol 16, No 2 (April), 2015: pp 96-104
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medication, loss of productivity, absenteeism from work, and early retirement (Igumbor et al., 2011). The epidemiology of pain has not been studied as much as other diseases because the complex pathophysiology and psychology of pain, the diversity of pain conditions, and practical problems of conducting such research in the community and in health care settings complicate such studies (Gerdle, Bj€ ork, Henriksson, & Bengtsson, 2004). Estimates of the prevalence of chronic pain in the general population vary according to the population studied and the definition of chronic pain applied (Igumbor et al., 2011). Tsang et al. (2008) found that the prevalence of chronic pain conditions is higher in the developing world (41.1%) compared with developed countries (37.3%). According to Igumbor et al. (2011), the prevalence of chronic pain was previously estimated as 35.5% in the United States, 35.1% in Finland, 31.4% in Sweden, 22.1% in Australia, 20.2% in Denmark, and as high as 46% in Israel. Little is known about the incidence of chronic pain in Africa because no studies addressing this issue seem to be available. It is also not clear what the prevalence of chronic pain is in South Africa because few countrywide studies could be found. Igumbor et al. (2011), in a study conducted in a township in South Africa’s Eastern Cape region, found a chronic pain prevalence of 38.5%, which is slightly lower than the 41.5% Rauf, Meyer, Marcus, and Becker (2013) found in persons attending four primary health clinics in South West Tshwane. This prevalence is also lower than the 87.2% prevalence found in people living with HIV and AIDS attending a primary health clinic in Tshwane (Maree, Wright, & Makua, 2013). Additionally, Maree and Wright (2008) found that 77% of cancer patients receiving palliative anticancer treatment suffer pain. Various health problems are linked to chronic pain, of which cancer is probably the most wellknown. HIV and AIDS, a condition affecting 5.1 million South Africans (UNAIDS, 2013), is notorious for pain because people suffering from HIV experience pain throughout the trajectory of the disease and an expected 80% with advanced disease will suffer severe pain (Harding, Powell, Kiyange, Downing, & MwangiPowell, 2010). Progressive degenerative conditions such as low back pain, a condition approximately 32% of adults living in Africa suffer from (Louw, Morris, & Grimmer-Somers, 2007), osteoarthritis, and rheumatoid arthritis are also responsible for chronic pain (World Health Organization [WHO], 2008). However, it seems as if chronic pain can be associated with any chronic disease, and being female, older than 50 years, and widowed or divorced, and having low socioeconomic
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status and unemployment increase the risk (Igumbor et al., 2011; Rauf et al., 2013; Tsang et al., 2008). Living with chronic pain is not easy, especially in South Africa where the public health care system, serving 80% of the population (SouthAfrica.info, 2012), fails people suffering from chronic pain. Pain is poorly managed not only at inpatient and outpatient cancer care settings (Beck & Falkson, 2001; Maree & Wright, 2008) but also at the district level at the nurse-lead primary health clinics (Maree et al, 2013). These clinics, according to the Declaration of AlmaAta (International Conference on Primary Health Care, 1978), address the main health problems in the community through the provision of promotive, preventive, curative, and rehabilitative services. Lack of resources plagues health care services (Frohlich & Shipton, 2007) and lack of knowledge of pain and pain management (Beck & Falkson, 2001; Maree, 2009; Maree et al., 2013) are major barriers to effective pain relief. In addition, South African studies (Igumbor et al., 2011; Maree et al., 2013; Rauf et al., 2013) found people visiting primary health clinics mostly experience moderate pain that might require either a weak opioid (Harding et al., 2010; World Health Organization, n.d.) or amitriptyline as first-line drugs for neuropathic pain (Chetty et al., 2012). Drugs such as those mentioned earlier can only be prescribed by doctors, leaving nurses at primary health clinics unable to initiate appropriate drug treatment (The National Department of Health, 2008). Medical practitioners, however, only visit primary health clinics to support nurses and usually review patients referred to them during these visits (Couper, Malete, Tumbo, & Hugo, 2003). Nkosi, Horwood, Vermaak, and Cosser (2009), in a study conducted in KwaZulu-Natal involving 58 primary health clinics, found that doctors’ visits to these clinics ranged from none (8 clinics) to twice weekly (2 clinics), weekly (17 clinics), every 2 weeks (20 clinics), and monthly (11 clinics). This pattern is in the best interest of neither the patient nor the nursing practice because failure to provide adequate pain relief when a patient has the right to it is considered moral negligence (Hunter, 2000). In 2008 the Adelaide Tambo School of Nursing Science, through the university-based Nursing Education South Africa (UNEDSA) program, was awarded a grant from the Atlantic Philanthropies to establish a Nursing Community of Practice for teaching and learning through community service in a resource-poor community in Tshwane. This program, among others, included a palliative care service brought to the community twice a week by means of mobile clinics. As supported by the World Health Organization’s definition of palliative care (WHO, 2013), this service was initially
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planned to render nursing care to patients suffering from end-of-life diseases (Maree & Ferns, 2008). This, however, was not possible because patients suffering debilitating consequences throughout the disease trajectory of various chronic diseases were also referred to the palliative care clinic. During the first 8 months, 48 patients were referred to the clinic. Most (54.2%) said they suffered from HIV and AIDS, 33% indicated they had tuberculosis, 23% hypertension, and 18.8% rheumatoid arthritis; 8.3% suffered cerebrovascular incidents, and the rest had various health problems including cancer, diabetes, and asthma. After conducting a record review, it was found that 43 of the 48 (89.6%) patients suffered from chronic pain. Of that 89.6%, 11.6% experienced mild pain, 39.5% moderate pain, and 48.8% severe pain (De Villiers, 2013).
PURPOSE OF THE STUDY Mackrodt (2005) emphasizes the need to understand the pain experience of each person because pain is a universal and complex phenomenon, and each individual reacts to his or her pain in a complex manner and expresses the pain experience differently. Farrer (2001) adds that symptoms are multifaceted and if the social, spiritual, emotional, and related physical dimensions are not considered, the symptom might be undermanaged or worsened. Optimal pain management, a professional responsibility toward the patient, is only possible when patients’ experience of pain is fully understood. The available South African literature concentrates on the incidence and management of chronic pain, and no qualitative work focusing on how this experience influences the daily lives of people could be found. The present study fills this knowledge gap as it explores how chronic pain influenced the daily lives of underprivileged patients receiving nursing care at a palliative care clinic serving a resource-poor community in Tshwane, South Africa.
METHODS The Study A qualitative, descriptive phenomenologic design, underpinned by the philosophy of Edmund Husserl, was selected for this study because, according to McCance and Mcilfatrick (2008), descriptive phenomenology allows researchers to uncover the essence of phenomena important to nursing practice. In line with the Husserlian phenomenology (Lopez & Willis, 2004), the researchers used bracketing and consciously attempted to put aside their own assumptions to enable a true reflection of the experiences of
participants. To achieve this, the researchers followed the guidelines of Ahern (1999) and clarified their value systems, acknowledged the areas of known subjectivity and potential role conflict, and attempted to recognize feelings that could indicate a lack of neutrality. The interests of the various gatekeepers, namely the university and the South African Nursing Council, and the extent to which they would support the project were considered. Additionally, the literature review was only conducted after the data were analyzed to avoid biasing the researchers’ thoughts. Participants The participants in this study were nine purposively selected community members, registered as patients at the palliative care clinic and who suffered chronic pain. The participants were underprivileged and lived in an informal settlement in a township forming part of the greater city of Tshwane. Six of the participants were female and all participants could speak and understand basic English. The ages of participants’ ranged from 28 to 77 years; four were single, four widowed, and one divorced. Three of the participants were functionally illiterate, and the literacy level of one was unknown. Four participants were on pension and received a government old age pension; five were unemployed, with one receiving a disability grant and two a state child allowance; two had no personal income. Three of the participants lived in brick houses and the others lived in one- or two-room corrugated steel dwellings. Two of the three participants living in brick houses had flush toilets and running water inside their homes, whereas the rest had a tap and either a flush or pit latrine in the yard. Although some had access to electricity, they could not afford to buy electricity coupons. Except for experiencing chronic pain, four participants said they suffered from HIV and AIDS, four from rheumatoid arthritis, four from hypertension, two from diabetes, and two from osteoarthritis; one participant indicated she suffered from tuberculosis. All participants except for one reported suffering from more than one disease. The first author, practicing as nurse at the palliative care clinic, selected participants who were considered to be typical of the population (LoBiondo-Wood & Haber, 2010). Data Collection and Analyses A total of nine in-depth interviews, in English and audiotaped, were conducted with the participants in their homes. Each interview lasted approximately 1 hour. A community health worker, conversant in the local languages, assisted with language issues when they arose. An opening question of ‘‘Please tell me how the pain influences your daily life?’’ was asked.
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Probes and prompting questions (Polit & Beck, 2010) were used to encourage participants to expand on their experiences. The first interview pretested the question and the participants struggled to understand the word influence. For the second and following interviews the Sepedi word kgoroletsa, meaning ‘‘hinder,’’ was used instead of influence. The data gathered during each interview were summarized and verified with the participants to be true and correctly understood. The data obtained during the first interview was included in the study. Data gathering and data analysis were done concurrently to determine data saturation. Tesch’s coding process (Bothma, Greeff, Mulaudzi, & Wright, 2013) was used to analyze the data. Interviews were transcribed verbatim and additional data included, such as a sigh, laughter, or crying, in the transcription to enrich the data. Field notes were typed and attached to the interview. Transcriptions were read through several times. Codes were developed based on the information provided by the participants, and the emerging information was entered into an Excel spreadsheet. Different colors highlighted the various emerging information, which was put together as themes. All three authors were involved in the data analyses. The categories and themes arising were debated, discussed, and reduced until consensus was reached. Trustworthiness Guba’s four trustworthiness constructs, credibility, transferability, dependability, and confirmability (Shenton, 2004) were applied to enhance the trustworthiness of the findings. Credibility was enhanced by using a wellestablished research method, submitting the research proposal to peer review, triangulation, and member checks. Triangulation was achieved by including a wide range of participants differing in terms of health problems, income and sources of income, living conditions, responsibilities, and age. In addition, a detailed description of the findings was presented and previous research findings were examined. Transferability was enhanced by providing sufficient contextual information to enable the readers to make such transfers. Describing the research design and implementation and the operational detail of the data gathering added to dependability. Lastly, bracketing and triangulation were used as confirmability strategies. Ethical Considerations The ethical guidelines outlined by Brink (2007) were followed. Approval to conduct the study was obtained from the university, the Research Ethics Committee of
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the university, and the manager of UNEDSA program. The community health worker who assisted with language issues signed a confidentiality agreement. Participants signed informed consent after the purpose of the study and their rights had been explained to them. They also received an information leaflet. Appointments were made with the participants and interviews were conducted in the privacy of their homes, with only the first author and interpreter present. By numbering the transcribed interviews sequentially and erasing the voice recordings after the interviews were transcribed, confidentiality was maintained. Data were only gathered until saturated.
FINDINGS Four themes arose from the data: pain as a multidimensional experience, the influence of pain on physical activities, the psychosocial influence of pain, and the influence of pain on spirituality. Pain as a Multidimensional Experience Pain was experienced as sadness. Although participants experienced pain in various parts of their bodies and suffered from multifocal pain, all experienced pain as ‘‘pain of the heart.’’ The sadness was so overwhelming that physical pain was not experienced when the heartache was severe. One participant said, ‘‘The pain is all over my body, but it stretches right into my heart,’’ and another explained her pain this way: ‘‘It is too painful to me. It is painful inside [hand on her heart] to me to feel this pain.’’ Pain also increased with sadness, described by saying, ‘‘When I feel sad, the pain becomes worse.’’ Stigmatization added to the sadness. One participant explained, ‘‘It is because I am sick, they laugh at me. It is painful. It makes me sad.’’ Physical pain as well as ‘‘pain of the heart’’ disturbed participants’ sleep, resulting in them being awake and thinking. Participants said, ‘‘Sometimes I do not sleep because of the pain. It is very painful, not just a little bit, a lot. Sometimes I sit through the night thinking. I talk to the heart because my heart is also aching..’’ ‘‘But if I am sleeping and I feel this pain it is when I have lots of periods inside my mind.’’ Being physically active or simply standing was painful. Although activity caused pain, it also eased it, especially for those suffering from arthritis. Physical pain was described as follows: ‘‘The pain is because of the arthritis..These legs, they did not want to walk, they did not have any strength.when I want to stand alone, then the pain starts.the strong pain.’’ Pain was also linked to other problems such as
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weakness and fatigue. One participant described the link between pain and weakness as follows, ‘‘.and even to stand for a long time.I won’t.it would be too difficult to me. I can stand but I will feel that I am getting tired.’’ Another said, ‘‘The pain makes me weak.’’ Although the severity of pain experienced varied from day to day, pain was a daily experience, as illustrated by this quote: ‘‘The pain is always here, since I know that I have.since I know that I have it, it has not go, it is always here.’’ Participants needed to plan their days according to their pain levels, as well as ensuring the completion of certain tasks before the pain became too severe during the course of the day. One participant explained, ‘‘I cook early before the pain starts. I must eat, I must take my tablets. The pain becomes worse as the day progresses.’’
The Influence of Pain on Physical Activities Experiencing pain deterred the physical activities of the participants. At times, the pain would be so severe they could not perform any physical activities, as related by one participant: ‘‘If I wake up in the morning and I hear the pain then I sit down for a while and wait for the pain to go, if the pain is not going anywhere, I sit the whole day.’’ Participants were also restricted to areas in and around the house, resulting in them doing nothing except sitting: ‘‘If I have the pain I am not able to do anything.’’ Participants who were able to be more active continued with their activities until the pain became too unbearable. One participant explained, ‘‘I do the gardening, when I see it is difficult, then I leave it like that.’’ Participants forced themselves to continue their daily activities. Despite the pain, they still walked a distance over rough terrain, in pain, to use a latrine outside their homes and walk the distance to collect their medication and pension. One participant explained the difficulty of walking to the latrine as follows: ‘‘I cannot walk, I just walk a little bit with the crutches. I can walk to the toilet, I just force.’’ Another participant explained her challenges: ‘‘I struggle to walk, I can’t walk far. I even struggled to collect my pension because I could not walk that far.’’ Most participants had to take care of their families, which included their grandchildren. One participant explained how difficult it was to take care of her children: ‘‘Even to wash is too bad for me; I can wash; now sometimes I was trying to wash whole washing for my children, now I choose. I take washing for the small one and mine only, this one and the other one, I leave them, each and every one can wash himself.’’
Participants also had to continue performing strenuous physical activities. One participant described how painful it was to perform the available temporary work: ‘‘You see as now we have a little job for the government to chop the., that field, it is too painful. It is difficult for me, but because I am suffering, I am doing the job.’’ Gardening was also affected by their pain experience and could either not be done, or done only when the pain was not so severe. A participant described how her pain experience influenced her ability to provide for herself: ‘‘Sometimes the pain causes me not to go to the garden. This makes me sad, because if I can’t plant, I cannot eat.’’ Experiencing pain also influenced basic hygiene, especially participants who had no access to a tap and latrine in their dwelling or house. One participant used his crutch as a support in his effort to collect water to enable him to wash: ‘‘I take the small bucket with a handle, then I put it over the handle of the crutch, then I bring the water, little bit, little bit at a time, until I have enough.’’ Having a bath became a problem and some participants had to depend on others to assist. One participant described how she depended on her mother by saying, ‘‘Sometimes I can bath myself, but sometimes I cannot bath and my mother helps me.’’ The Psychosocial Influence of Pain Pain was experienced as the cause of poverty as it restricted them from working and earning an income. They wished to be healthy and return to work because being unable to generate an income caused great despair. One participant described the situation by saying, ‘‘I can’t work. For my work I must be able to walk. I can’t go to my work anymore. My dad is not working. I don’t have a mother anymore. It gives me big problems.’’ Another participant said, ‘‘Total, total not able to work.up to now I have been praying, if I can be healthy, I will look for work.if I can be healthy I will go to work, I am still strong.’’ Some participants had to rely on the kindness of the members of the community to provide them with food: ‘‘I eat. The people, when they come here, they bring me food.’’ Despite severe pain, some participants still needed to provide for their families. One participant with young children described the needs of her children and herself by saying, ‘‘Because these children they are too young. It is me who must get a job to work for them. They are looking for more to eat. if I go and lie down no one is going to give them food. That when I say that maybe sometime he [the father of the children] can give me R200 (25 USD) he can have others to give them but then he forget about me here because I am ill.’’
Influence of Chronic Pain on the Lives of Underprivileged South Africans
As a result of poverty and the lack of knowledge with regard to disease processes, experiencing pain forced participants to think and worry about the future, about what may happen and who would care for them. One participant described her concerns as follows: ‘‘It [pain] makes me confused. It’s been a while now.I.I have been sick for a long time now, it’s been a few years now.’’ Participants were also worried about their children as reflected by this quote: ‘‘I think who is going to clean here and who is going to take care of them. And then because I am having a pain, there is no one here to help us.’’ Pain caused participants to think about their illness and the realization they might die. One participant wondered why dying was a reality for her and not for others by saying, ‘‘When I see other people walking, I wonder why me? I can only sit on the bed.’’ Some wondered who would take care of them and the family they leave behind, expressed as follows: ‘‘I think maybe because this pain is like painful, maybe I am going to die. I feel troubled, I feel sad and I feel trouble and I ask myself if I die my children will suffer,’’ and, ‘‘I wonder, when I feel like this, who is going to take care of me?’’ Experiencing pain resulted in social isolation. Participants felt isolated because there was no one to help them. One participant explained how her pain adds to her social isolation by saying, ‘‘The people they come who come.They are few. This time and that time, they do come. They must come and see how I am doing.Sometimes, I visit friends, I don’t hear the pain. But when I get there, I just sit, then the pain starts, then it is difficult to get there.I struggle. I am.I am.I am alone.during the day.’’ Some days when the pain was so severe, participants isolated themselves: ‘‘Sometimes I feel like not talking to people because of the pain.’’ Even though participants felt isolated and isolated themselves, they remained dependent on others for help. One participant said, ‘‘As she is my child, they see that eh, they can do the job for, for me, as I am there, I’m their mother.they are helping.because they see that I am ill, actually they know that I am ill.’’ Another participant had to pay someone to assist her—something she could not afford. She said, ‘‘Others must help me when I go and buy groceries, they must help me carry the bags. I must pay them, they do not do it for free..’’ The pain experience also resulted in loss of independence. Because participants became dependent on others, they felt worthless, not like other people, and therefore did not belong. Being dependent and feelings related to dependency were described as follows: ‘‘I feel ashamed. I feel that I am whiny. But I have to ask them.’’ ‘‘I feel like I am nothing, because
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I don’t belong to.the other peoples.I don’t look like the other people, because I see each and everybody.she is happy.let’s take maybe I have meet with them, they are happy. You see even to wake up here is too difficult to me.they can jump.I can jump but not jumping like the times I was jumping.I feel pain.’’ All participants experienced negative emotions such as anger, shame, and bitterness. Two participants expressed their anger by saying, ‘‘I become angry with myself when the pain begins. I think to myself why I brought this over myself?’’ and ‘‘I become angry.at the children, when they do not do the right things as I would like them to do. I also become angry with the pain, but.what will I do, when the pain comes, it comes.’’ Bitterness was described: ‘‘My heart is.is bitter.’’ Having pain in combination with HIV and AIDS also led to being ashamed. ‘‘I feel ashamed, because of the pain and because of the disease.’’ All participants found themselves in a constant battle between forcing themselves to continue with a life with pain and succumbing to the pain. Sometimes pain won and they found it difficult to motivate themselves to start the day. ‘‘I struggle to get myself ready. I struggle to feel that I have energy to do the work that I am used to do.’’ ’’Sometimes the pain causes me to feel that I do not want to do anything, I must just sit, I must do nothing.’’ Participants, however, expressed that talking about their pain and their feelings gave them relief and strength. One participant said, ‘‘It helps me [to speak about the pain] I think if when I am with people we talk with the disease, it gives me strength.’’ Another participant felt meeting the primary researcher gave her the opportunity to talk to someone who would listen. She said, ‘‘No, when I talk to you I feel better. But there are other things, because, I haven’t found the nurses who sat with me and talked to me. So, now I have found you, you sit with me and talk with me, I feel better, much better.’’ The Influence of Pain on Spirituality God and faith played a very important role in the daily lives of some participants. Their belief in a higher being was a constant factor in their lives and a source of hope. One participant said, ‘‘Hmm, I am praying because.if maybe I was not praying maybe I can’t get nothing in the house, because I know God is with me. I haven’t sleep with the stomach that is empty. Always I am eating’’; another added, ‘‘Hmm.the pain of the heart is that one that I can say I must not match with that one for the body because this one for the heart I can say God He will help me or she will help me and then this one for here [hand on the back] is that one that makes me to worry and then I must get help to
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the sisters or the doctors.’’ Most participants even experienced an improvement in pain just by praying and believing. A participant explained, ‘‘Now God is there for me. Always when I feel sick, I talk with Him, then He hears me, He helps me a little, then the pain goes away.’’ Another said, ‘‘Just to pray makes me feel better.’’ Pain also hindered religious practices and some participants struggled to attend church, resulting in them having to find other alternatives to fellowship. Not being able to walk the distance to the church was a barrier to religious practices. One participant said, ‘‘I can’t go to church, I cannot walk that far. It makes me sad. It is pleasurable to fellowship with others. Now I only listen to church on the radio.’’ Although the belief is strong and enhanced through experiencing pain, participants could not help but question whether or not their prayers were heard. One participant questioned the answering of her prayers by saying, ‘‘Hmmm, sometimes I’m thinking that maybe I am not praying very well, why this pain not goes away. God does not see me that I am suffering with this pain?’’
DISCUSSION The study provides evidence that participants experienced total pain, a concept originating from the work of Cecily Saunders characterizing the multidimensional nature of the patient’s pain experience, which includes physical, psychological, social, and spiritual elements (Clark, 1999; Saunders, 1988). Harlos and MacDonald were quoted by Mehta and Chan (2008), are of the opinion that total pain can also refer to suffering, because some patients use terminology of physical pain to describe their suffering. Charmaz (1983) describe suffering caused by chronic illness as the ‘‘loss of self’’ resulting from restricted lives, social isolation, being discredited, and being a burden to others. As illustrated by quotes such as, ‘‘The pain causes me not to go to the garden,’’ ‘‘the people.they come.they are few,’’ ‘‘they laugh at me.,’’ and ‘‘others must help me.,’’ participants experienced all the elements of suffering. Adding poverty to their suffering, which has a devastating influence on the quality of life of underprivileged palliative patients (Jansen van Rensburg, Maree, & van Belkum, 2013), it is quite reasonable to say that participants suffered severely and were caught in a vicious circle where total pain was responsible for severe suffering while their suffering added to their pain. As supported by ‘‘it is the pain, it is the heart’’ and ‘‘it is painful, it makes me sad,’’ participants were unable to separate pain and sadness. Considering
the circumstances of the participants and the various different losses experienced, sadness as pain is not unexpected. Corless (2006) defines grief, a synonym of sadness, as a state of mental and physical pain experienced by the loss of a significant object, person, or part of the self. Participants experienced various losses, as illustrated by ‘‘I can’t work’’ and ‘‘if I can’t plant I cannot eat’’; participants not only lost their health, a significant part of the self, but also their ability to work and earn an income and produce food—an overpowering loss in their already impoverished lives. Corless (2006) also describes grief as noticeable in behavior such as social withdrawal, which was also part of participant’s lives. Not only did participants isolate themselves when they experienced severe pain, but their pain experience also lead to them feeling socially isolated. Not being able to walk and attend church or visit friends isolated participants even further. In the African culture, pain is not individualistic and has strong social dimensions. The mere disturbance of relationships is experienced as pain (Lubbe, 2004), which also added to their total pain. However, it should be considered that the expressions of sadness might also refer to depression related to the pain (Tsang et al., 2008). Pain prevented participants’ engagement in daily physical activities. This hindrance was expressed as ‘‘unable to do anything’’ and ‘‘I sit the whole day.’’ Participants were unable to perform tasks such as ordinary household chores. Even hygiene practices, a basic need, became a burden. Vallerand and Nowak (2009) and R aheim and H aland (2006) found the loss of ability to function physically to be a common experience of people living with chronic pain. R aheim and H aland (2006) also found that the exhaustion caused by pain can become so overwhelming that people feel unable to do anything. Iliffe et al. (2009) found that the loss of ability to engage in physical activity due to pain was significantly associated with a depressed mood. Expressions such as, ‘‘Sometimes if I feel it.I have the mind that maybe I can die’’ and ‘‘Maybe I am going to die’’ make it highly likely that participants were depressed; however, this requires further investigation before a definitive conclusion can be made. As evident from expressions such as, ‘‘These children, they are too young. If I go and lie down no one is going to give them food,’’ and ‘‘even if I have got a pain I try to work.I have to, I stay alone.,’’ some participants were forced to engage in activities of daily living, even though it was a painful struggle. Although this seems distressing, McCracken and Eccleston (2005) found that patients suffering from chronic pain who are willing to engage in activity despite of their pain can function on a healthy level.
Influence of Chronic Pain on the Lives of Underprivileged South Africans
Although pain experience hindered the practice of religious activities, it did not influence the participants’ faith. Some still believed ‘‘God is there for me’’ and ‘‘God he will help me.’’ Wachholtz, Pearce, and Koenig (2007) suggest that people rely on their spirituality and religious faith to cope with illness. Spirituality may even have a positive outcome by reducing pain through distraction, reducing stress and acting as a form of support. Participants especially found hope and relief through prayer, as illustrated by the quote ‘‘just to pray makes me feel better.’’ Prayer has been found to be either the primary or secondary most common coping mechanism to deal with pain (Wachholtz et al., 2007), which Andersson (2008) refers to as religious coping. Spirituality can, however, have a negative impact by creating feelings of abandonment by God because of increased sensitivity to pain (Wachholtz et al., 2007). One participant did question her faith and God’s ability to hear her plea but at the same time indicated that physical pain is manageable with other mechanisms such as medication, but emotional pain is a pain only God can cure. Disbelief did not outweigh belief and the role God played, and faith in Him was constant and a source of hope. Limitations Despite the fact that all patients who experienced pain were eligible for the study, it was mainly women who participated. The findings therefore may not represent the perspective of the male population. Because of the contextual nature of the study and using a purposive sampling method, the findings of the study cannot be generalized to other palliative patients attending other health care and palliative care services
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in South Africa. Additionally, there could be more than one interpretation of the narratives because no qualitative study reflects the only true meaning. Implications for Nursing Several implications for nursing derived from the study. Nurses practicing in primary health care clinics should be empowered with knowledge and skills to assess and manage chronic pain in a holistic manner. In addition, best practice guidelines focusing on the pharmacologic and nonpharmacologic management of chronic pain in primary health care should be developed. Lastly, nursing researchers and practitioners should collaborate in developing and testing interventions aimed at improving pain outcomes for people using primary health care services.
CONCLUSIONS Participants’ experience of pain tells of severe suffering that hindered them in performing activities of daily living. Participants were confronted with total pain and were caught in a vicious circle where pain was responsible for severe suffering with their suffering adding to their pain. However, strong religious beliefs improved pain and gave hope for the future. Acknowledgments The researchers would like to thank the Atlantic Philanthropies for the funding of the community-based health services program that made this study possible.
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