The Process of Pain Management in Cancer Patients at Home: Causing the Least Harm – A Grounded Theory Study

Design

The study was conducted using a grounded theory approach, which is a method to describe behavioral patterns and lived experiences of individuals and to develop theories about the main issues in peoples' lives.[25] The majority of grounded theory studies try to explore social experiences and psychosocial and stepwise stages that define a specific phenomenon or event.[2627] Grounded theory method is based on symbolic interactionism and allows individuals to discover and perceive meanings through interacting with others.[2829] It also allows researchers to find new aspects of phenomena. Therefore, this method can yield a theory based on actual events and in a systematic way.[30] This approach uses flexible methods for data gathering, analyzing, and extracting meaning from data and upgrading codes from a conceptual level to a formulated theory level.[31] The emerged theory is substantive as it elaborates on the experience from a particular population or setting's viewpoint.[32] The constituents of grounded theory method are theoretical sampling, constant comparative data analysis, theoretical sampling, memoing, determining the core category, and developing a explorative theory.[30] The methodology used in this study was grounded theory based on Strauss and Corbin's (2015) approach to explore the deep experiences of patients and family caregivers in pain management at home and develop a substantive theory.

Setting and participants

The setting of this study was oncology wards and palliative medicine clinics in the hospitals affiliated to Iran University of Medical Sciences. The study population consisted of all adult cancer patients (older than 18 years old) who suffered from pain and their family caregivers. Inclusion criteria for the patients were having cancer disease; suffering from pain; ability to ponder, rethink, and express experiences; living at home; and desire to participate in the study. In addition, inclusion criteria for the family caregivers were having the main responsibility of providing care at home; ability to ponder, rethink, and express deep experiences; and desire to participate in the study. The number of participants was determined based on the collected data and theoretical completeness. Sampling was done through purposeful sampling, and then as the data collection progressed, theoretical sampling was used; data gathering was continued until data redundancy. Participants were 32 family caregivers at the age range of 24–72 years and 20 patients at the age range of 18–79 years [Table 1].

Data collection

The patients and caregivers were interviewed separately. Data were collected via in-depth unstructured interviews. The face-to-face interviews with patients would be started by an open-ended question, “tell us about your experiences since you have been cared for at home.” In interviews with care givers, the open-ended question was “tell us about your experience since your patient is under your care at home.” Based on the respondents' answers, the interviews would be continued by probing questions. The interviews lasted between 45 and 60 min in the case of patients and between 60 and 100 min in the case of caregivers. With permission of the participants, the interviews were audio-recorded and transcribed verbatim afterward.

Ethical considerations

Ethical approval was obtained from the Ethics Committee of the Iran University of Medical Sciences under the code IR.IUMS.2018.780. Other ethical concerns were stating the objectives of the study for the participants, securing an informed consent, signing written informed letter of consent by the participants for an informed and voluntarily participation, observing unanimity and confidentiality of the information, asking permission of the participants to audio-record the interviews, and reminding the participants of their right to leave the study at whatever stage.

Data analysis

Constant comparative data analysis was conducted along with data gathering based on Strauss and Corbin's (2015) guideline at five stages. These stages are data analyzing and identifying the concepts for open coding; constant comparative analyses based on the differences and similarities and describing the aspects and details of the concepts (axial coding); analyzing information to prepare the ground; adding the process to the analysis; and integrating categories where categories are connected to the core category and theory are modified and finalized.[29]

Patient and family caregiver's positive interaction

Proper relationship and interaction between patient and caregiver facilitated communicating pain and obtaining information about the pain. In general, when the major categories and pain management stages were completely clarified, we found that the interaction between family caregiver and patient was a background for other stages in the process so that it formed the context where pain management takes place in. Accepting the responsibility of pain management by the family caregiver played the main role in creating the positive interaction. The majority of caregivers mentioned that they were concerned about their patient's pain and found it an incumbent upon themselves to alleviate the pain. In addition, emotional attachment between family caregiver and patient was one of the factors in creating a better interaction.

”My boy only talks to me about his pain. He is not Ok with talking to his father about this because their relationship is not that good. He goes through the pain but do not asks his father's help when I am not at home. His relationship with me is very good; after all I am his mother and were deeply attached” (FCG 2, mother).

In addition, the patients noted that they preferred a specific family member to be in charge of providing care to them and refeered to specific member of their family as reliable person to share and alleviate their pain, a person who gave hope and peace to them. “I really love my wife. Although, we are married for only 4 years and we have a small kid, she would do anything she could to help me. It is only with her that I feel in peace. She understands my pain and knows what to do” (P3, male).

There was only one case where lack of a proper FCG-P relationship led to negligence of the patient and suboptimal pain control for the patient: “My wife has left a few years ago. My children are at work during the day and they don't pay attention to me when they are at home. What they do is to give me food and my medicine and then spend their time at their room. They don't ask how do I feel? Most of the time I have pain but I wouldn't tell them” (P. Male).

Positive FCG-P relationship and interaction is the main element of a successful palliative care, and without it, pain assessment and relief fail to achieve the expected results.

Pain assessment

This major category has the following four subcategories: (1) listening and (2) asking questions and (3) looking and (4) paying attention to physical, psychological, and behavioral symptoms and prediction.

Listening and asking questions

One of the ways of creating an effective FCG-P relationship is to have a clear understanding of the nature and severity of pain through listening and asking questions. Listening to what the patient has to say and their description of pain is the first and foremost way of pain assessment. In many cases, patients were able to express and describe their pain and share their pain verbally and clearly. They described pains as burning, friction, compressive, stabbing and sharp, tenesmus, cramp, and feeling burst at different areas like abdomen. They were also able to determine the area of pain, its frequency, oscillation, peaks, and what intensified the pain (e.g., movement, eating, and changing positions). “My mom cannot bear the pain anymore; she calls me the moment the pain starts. She says “my bones are aching like they pressing something pointy into my bones” then asked me to press her bones” (FCG 6, son).

”When I am in pain, I ask my wife for help. I would say it is my stomach… whenever it starts, I feel like my stomach is going to burst” (p 11, male).

Indirect expression of pain was mostly by the patients who were not able to express their feeling verbally or entered into emotional moods and expressed their pain along with other psychological and behavioral signs such as moaning, screaming, crying, murmuring, decreased tone of voice, or moaning at sleep. In addition, patients with a decrease in consciousness level or cognitive disorders were not able to express their pain in a clear way. They would express the pain by making voices lie “ah” or “aakh” or sudden and short shouts. Patients' inability to describe their pain hindered pain assessment process (area and severity of pain) for the caregivers. “He is not able to talk since his disease has progressed. The only sound he makes is moaning or 'aak'. Sometimes I bend and close my ear to his mouth to hear better so that I might understand what he says” (FCG 17, daughter).

After listening to what their patient has to say, family caregivers would try to find more information by asking questions about the specifications of the pain. They would also reflect their understanding about the severity, place, and other specifications of pain to the patient and ask the patient to confirm the assessment. When the patient demonstrates the psychological and behavioral symptom, the care givers ask questions about the symptoms of pain to distinguish them from those of sadness and make sure that such behaviors and psychological symptoms are not merely due to depression and sadness. In some cases, the family care givers believed that the patient was trying to hide their pain and had to ask questions. “When I see him frowned, stared at one spot, and silent, I know that he is in pain. He would not complain so that I have to ask him if he is in pain? Only then he admits a bit of pain, but I know that how severe is that bit of pain” (FCG 20, brother).

Looking and paying attention to physical, psychological, and behavioral symptoms

Paying attention to the visual pain indicators is one of the most reliable ways of pain assessment by caregivers. These symptoms help the family caregivers to determine the area and severity of pain. Sometimes, it was hard for the family caregivers to trust the patient's statements about the severity of pain and other specifications. This is mostly true for the case with old patients or patients with cognitive disorder, disorders of consciousness, patients with verbal disabilities, patients who hide their pain, or patients who have developed addiction to medicines. The caregivers noted that paying attention and watching physical, psychological, and behavioral symptoms along with listening to patients' expression of pain added to their confidence of their pain assessment. The most common physical symptoms' expression of pain observed by the caregivers was sleep disorder (waking up frequently mostly overnight), sweating, pale face, flushing in some cases, change in facial expression and frowning, feeling nausea, lack of appetite, increased breathing rate, lack of energy, feeling pain after movement and feeling pain in legs, and inflamed legs. In addition, skin redness, blisters, skin inflammation after radiotherapy, pain in the surgery area, aphthous ulcer, and glossitis following chemotherapy were clear symptoms of pain.” when she is in pain her face color looks like white plaster and and her lips would be dry. She frowns, cannot sleep overnight, and keep moaning when she is pain…. She would say 'I'm burning'” (FCG 29, husband).

”By now it has been 2 months that my mother suffers severe bone pain. She keeps asking me to massage her back. She cannot stay in one position. She cannot sit… and screams in pain overnight” (FCG 18, daughter).

Most of the time, severe and persistent pain was accompanied by psychological and behavioral symptoms. These symptoms include agitated behavior, aggressive motions, punching, and knocking the head or limbs around or a decrease in activity and staying at bed. Other behaviors such as writhing, pressing the painful area and covering it with hand, changing body position frequently between sitting and supine positions, anger and temper, sadness, and speaking less than the usual during the pain, were effective in assessing the pain and determining the severity of pain. Some of the caregivers noted that some of the psychological and behavioral symptoms were observed constantly in patients with chronic pain, but in particular, when pain started or intensified, these symptoms were also exacerbated. “He cries and shouts when the pain increases; sometimes he bites the pillow and waves his fist in front of his stomach. He cries 'God please finish it'” (FCG 11, wife).

”She folds her legs into her stomach and keeps the pressed on her stomach. She bites her lips and her face sweats. She closes her eyes and cries and moans. If we ask her something she shouts 'shut up'” (FCG 17, husband).

Touching

Touching the painful area causes more pain and most of the caregivers avoided doing so. They mentioned that sometimes accidentally and unintentionally touched the painful area and the patients react with screaming or pulling back. Such responses confirm the pain:” When I want to change her position in the bed or massage her, she would say 'be gentle please and do not touch my legs. They hurt.' Her legs are swollen and very painful. She never lets me to touch them.” (FCG 27, daughter).

Prediction

Patients and care givers with a long experience with the disease and caring were able to predict the condition and factors that caused more pain. They were able to predict initiation of pain after therapeutic procedures, intensification of the pain as the disease progresses, and initiation of pain after pain causing stimulators such as moving the body or eating. By prediction, there would be no need to confirm and check the pain: “I know that chemotherapy causes aphthous and burn. Therefore, when he says that his mouth burns and he cannot eat, I am sure that he is in pain and I try to help him by preparing soft and watery foods” (FCG 23, mother).

Determining the severity of pain

Determining the exact severity of pain was an important and essential step in making the right decision about the pain relief approach and the right time to use them. This major category consisted of three subcategories of severe pain (intolerable pain), mild-to-moderate pain (tolerable pain), and malingering.

Severe or intolerable pain

Determining severe and intolerable pain was mainly based on the patient's expression and descriptions of the severity of pain such as killing pain, agonizing, and intolerable. Then, the family care givers confirm the severity of pain based on the physical, psychological, and behavioral symptoms. Family care givers found symptoms such as waking up and starting to cry or moan, fainting due to the severity of pain, sudden sweat and pale face, bad temper, and screaming with no reason as the symptoms to confirm a severe pain. The care givers with longer experience in taking care of their patients found a set of specific symptoms as the symptoms of severe and intolerable pain.” When he is in a severe pain, his face becomes pale and sweaty … then he writhes and screams” (FCG 25, Son).

In some cases where the disease was highly progressed, the participants noted that using nonpharmaceutical palliative approach or even using the painkillers that used to be effective became ineffective and only using narcotic painkillers could help. The participants found such a situation as a symptom of severity of pain. “The painkiller pills were effective in the early days that they took out the tumor out of his brain. However, since the recurrence of the tumor, his pain has become even more severe and only narcotic pain killers can help him” (FCG 12, father).

Mild-to-moderate pain (tolerable pain)

In this cases also, the patient's expression about tolerability of the pain was the first measure. The patients were expressing that the pain is tolerable and they were reluctant to consume painkiller unless the pain becomes unbearable. Lack of physical, psychological, and behavioral symptoms was another clue. In addition, family care givers find effectiveness of nonpharmacological approaches such as massaging, warming the painful area, or effectiveness of usual pain killers such as acetaminophen as the clues of mild-to-moderate pains.” When the pain is not severe, I would ask my mom to massage my legs and back with olive oil or help me to take a warm shower. In this way I feel better” (P15, son).

Malingering

In some cases, there was an inconsistency between the pain that expressed by the patient and how it was perceived by the caregiver. Indeed, verbal expression and psychobehavioral reactions of patients did not match the assessments and observations of family caregivers. Such noncongruent dyad in the perceived pain was reported by the caregivers as “pretending to have pain” and became known as “malingering.”

They noted that they knew their patients, and based on their approaches for verification of pain, they would conclude that in some cases the pain expressions are not based on real pain. These malingering behaviors are to seek attention, to receive more psychological and emotional support, or due to drug addiction and trying to get the most out of it.

”I know that my boy has become dependent on the drugs. To avoid the fact that he has cancer, he prefers to spend most of his time asleep. Therefore, he keeps complaining about pain and asks for more morphine” (FCG 4 mother). One of the main negative outcomes of malingering was the disruption of the mutual FCG-P relationship and fatigue in the caregivers, which resulted in disruption in the process of pain alleviation. “Six months after the treatment and despite the fact that physicians believe that the treatment was highly successful, she still says that she is pain. She cries and begs for narcotic sedative. If I refuse, she will scream and become aggressive. This drives me mad. She would throw anything she can towards me. I have talked to her doctor; he believes that she is addicted” (FCG 7 mother).

Hierarchical approaches to pain relief

In most of the cases, utilization of pain relief approaches has hierarchical pattern, so that after diagnosing the pain and its severity, caregivers use a hierarchical approach that starts with nonpharmacological palliative solutions and drugs are used if these solutions fail to relieve the pain. The participants stated that using medicines is not the only solution to relieve pain. Family caregivers and patients knew that pharmacological approaches were faster and more efficient ways to relieve pain; however, they preferred not to start with those approaches given the risk of addiction, development of drug resistance, the side effects, and the multiple drugs that might be used by the patient. On the other hand, some of the family caregivers believed that inadequate alleviation of pain has destructive effects and leads to more physical weaknesses and psychological problems. Therefore, they tried to avoid more serious harm to the patient and at the same time maximize palliation by choosing the best and most effective approach. This category plays a key role in the development of home pain management process theory: “causing least harm” with three subcategories including emotional–psychological supports, relaxing solutions, and using pain-relieving medication.

Emotional–psychological supports

Solutions to boost the patient's mood and spirit or distracting attention from pain were used when the pain was assessed as mild and tolerable or the family caregivers are convinced that their patient pretending to have pain or the patient is anxious, scared, depressed, or hopeless. Energetic activities such as listening to music, having fun, taking the patient outside, giving hope to the patient, gathering around children and those the patient enjoys their company, watching movies, light physical exercises, and praying and reading the holy books are some of the solutions that the patients found palliative. Sometimes, the caregivers tried to induce strength to cope with the pain, not to notice it, or being strong in the face of pain:” When my boy says 'Mom I have a little pain' or find him a bit sad and down, I try to distract his attention. We would play a game or watch a comic movie or listen to a happy music. In this way, he will be distracted for a few hours” (FCG5, mother).

”When I am in pain, my wife would play a happy music and my daughter dance for me. Then I forget all about the pain” (P18, male).

Staying with the patient throughout the time that the patient was in pain not only attenuated their anxiety but also enabled the caregiver to find about the patient's pain early enough to take an approach. The family care givers stated that they tried to conceal the sorrow and concern to keep the spirit of their patient high. In addition, in the face of occasional aggressive behavior of patients, they try to stay calm and calm the patient by talking to them: “He is very aggressive when he is in pain; but I understand. I would sit next to him and pet him and try to distract him from the pain. I would tell him that he is going to be Ok and that he must be strong. In this way I try to make him calm” (FCG 28, wife). “When I am in pain, my daughter would sit next to me and pray and read the Holy Quran. In this way I feel calm and the pain is alleviated” (P17, male).

Relaxing solutions

A practical approach to pain relief is to massage the painful areas by different oils such as olive oil, using warm compress, taking warm bath, placing the patient in special positions (e.g., keeping the swollen legs above the body, or keep changing position in the case of bone pain), and creating a quiet and peaceful environment. Some of the patients and caregivers stated that spiritual approaches such as praying and reading the Holy Quran were effective in alleviating the pain and making it more tolerable. “I would massage her legs and back with olive oil or take her to the bath for a warm shower when he is in pain. After the shower, he says that the pain is much less and that he feels better…. Then he can take a peaceful nap for a few hours” ( FCG 15, mother).

Using pain-relieving medication

If the above approaches were not effective and the pain persists, the family care givers would use pharmacological pain relief. Nonnarcotic medicines like prescribed pills and lotions were the first choices. Using these medicines depends on the severity of pain and the patient's response to painkillers. Using narcotic painkillers was the last choice for the family caregiver. The participants were aware of the side effects of the narcotic pain killers and expressed their concerns in this regard. “Trying to bear the pain as much as possible” was a concept that mentioned by most of the patients. Still, in some cases, narcotic painkillers were used as the last resort. However, in some cases that the disease was quite advanced and the participants knew by experience that nonpharmaceutical solutions were ineffective, the hierarchical approach would not be an option. In these cases, the prescribed narcotic painkillers would be used at the first choice. In addition, the family caregivers stated that they kept using psychological supports and other approaches such as relaxing patient with massage in the entire duration of the patient's pain.

Assessment of the outcomes of pain relief approaches

Assessment of the outcomes would be done continuously throughout the pain management process by the participants using the same approaches used in the early stage of assessing the severity of pain.

Determining the range of effectiveness

The range of effectiveness reported from complete pain relief to nonalleviation. Among the clues of pain alleviation were the patient's expression as to alleviation of the pain, better sleep quality, good appetite, increase in the ability to do physical activities, better mood, and positive facial expressions. On the other hand, the clues of failure of pain relief approaches in the patient were writhing, sweating, sleep disorder, and continuous moaning. When the pain was not relieved, the participants would reassess the pain in a more accurate way, adopt other approaches, move to the next step of pain alleviation, use higher dosage of painkiller or use the painkiller with shorter time gaps, and look for the causes of ineffectiveness of the palliative approaches. Returning to the early steps of pain assessment and the following pain relief steps indicate the cyclic and dynamic nature of pain palliation process. In the case of the failure of pain palliative measures at home, mostly at advanced stages of the disease, taking the patient to hospital was the last measure. “Even though I give her morphine every two to three hours at home, her pain doesn't go away and she is constantly in pain. The pain was so severe that she had became badly weak. She was in an anxious mood and thought that she was going to die. She keeps saying I'm dying. Don't let me die. She was begging us to save her, so we took her to the hospital….” (FCG 12, husband).

Barriers to pain relief

Opioid addiction, concealing pain, and conflict in family members' perspectives about using pain relief approaches were mentioned as three main barriers in pain relief.

Opioid drug dependence and asking for more narcotic painkillers particularly by young patients was one of the causes of ambiguity for the family caregivers to recognize the real pain of malingering.” We are always arguing about the narcotic substances. I cannot tell when he is really in pain anymore. All I know that in most of the cases he is faking. Sometimes I leave him at home for hours to calm my nerve. The thought that my boy is now a drug addict is as painful as the moment I found that he has blood cancer” (FCG11, mother).

Concealing pain was one the main barriers to assess pain accurately. The main reason for hiding and enduring pain was to avoid worrying and bothering the caregivers or causing trouble for them. “My mother is very patient and laconic. Although, she is always in pain, she never complains. She does not want to worry us… Still I can tell by her face when she is in pain. Sometimes it is hard to tell” (FCG 6, daughter).

”I try to stay calm as much as I can and do not complain. I cover my face with the blanket when the pain is too hard so that other would not see my crying. I don't want to agonize my children anymore you know” (P18, female).

Conflict in family members' perspectives about pain palliation measures was a source of quarrels in families and an obstacle of pain relief. Patients' relatives' unawareness about pain management process and irrational interventions such as using medicine in an improper way or using handmade traditional painkillers that usually lead to side effects and more trouble for the patient were some of the issues. “While I am highly worried about drug addiction in my son, his sister and father cannot understand my concerns. The only thing that matters for them is the pain. They insist that I should administer the painkiller the moment he starts to complain about the pain. They really bother me and there is always a quarrel among us” (FCG 17, mother).

Another aspect of the conflict was the belief in some of the family members that feeling pain is natural. These individuals were inconsiderate about their patient's pains and this was a cause of tension and disruption in the process of pain alleviation at home.

Facilitators of pain relief

Acquiring knowledge and information about the pain palliation process and having the family's support were among the main facilitators of pain palliation.

Learning about the nature of pain and how to relieve it using formal and informal resources such as health-care professionals, the Internet, and others who have experiences in this area like friends, relatives, and even other patients with similar disease resulted in a deeper perception of pain experience and a more reliable assessment of each steps in pain relief process. “Since I have been diagnosed with the disease, I have tried to learn about it and ways to treat it on the Internet. Now I even know more than my doctor (laughter). I now about the side-effects of painkillers and that the side-effects are much worse than the pain. Therefore, I try to endure the pain and use nondrug ways to reduce my pain” (P16, son).

In addition, the family members' support and their participation in the caring process facilitated dividing the task of care between family members and preventing fatigue and burnout in main caregivers of the family. “My daughter comes in the afternoon. She is married. When she is here and looks after her mother, I can take a nap and rest. In this way I can stay up until the morning and look after my wife.” (FCG 22. Husband).

Limitations of the study

Reluctance or lack of ability of some of the patients to participate in interviews was a limitation that in some cases made it impossible to collected dyadic perspectives of the patient and care giver. This was mostly the case with the patients who had severe and long-term pains. To overcome this limitation, we tried to conduct interviews with the patient when the effectiveness of painkillers was the highest level and the patients' pain was relieved. In addition, the interviews with patients were conducted in several short sessions.

Financial support and sponsorship

This paper is a part of dissertation of a PhD graduated that supported by the Iran University of Medical Sciences (contract number: 97-4-3-13393).

Conflicts of interest

There are no conflicts of interest.