Ethical considerations for providing vocational rehabilitation services to individuals with chronic pain

Abstract

BACKGROUND:

Approximately 100 million Americans live with chronic pain. These individuals are often negatively affected by the many myths, misunderstandings, and stigma associated with chronic pain and its treatment. These negative attitudes and misunderstandings on the part of the general public, significant others, vocational rehabilitation (VR) professionals, and health care providers can exacerbate their pain, preclude them from receiving effective treatment and rehabilitation, and undermine their overall quality of life.

OBJECTIVE:

The purpose of this article is to examine ethical considerations for providing responsive VR services that validate and appropriately address the needs of individuals with chronic pain.

CONCLUSION:

The authors (a) define chronic pain, (b) provide examples of chronic illnesses and disabilities associated with chronic pain, (c) examine the demographic characteristics of individuals with the highest rates of chronic pain, (d) discuss common myths about chronic pain, and (e) discuss sections in the 2017 Code of Professional Ethics for Rehabilitation Counselors that are especially relevant to providing services to this growing VR clientele.

Keywords

Ethics chronic pain vocational rehabilitation code of ethics

1 Introduction

Chronic pain is a severe, often debilitating condition, and it impacts all functional domains. Despite the severity and magnitude of chronic pain as well as its potentially negative impact on psychological well-being, it is widely misunderstood (even by medical professionals); often invalidated by others; and linked to an array of myths that undermine individuals’ ability to receive appropriate diagnoses, treatment, and rehabilitation (Brennan, Carr, & Cousins, 2007; Koch & Rumrill, 2017). Because vocational rehabilitation (VR) professionals may also be influenced by these societal myths and misunderstandings about chronic pain, it is imperative that they examine their own misperceptions and biases and engage in ongoing education to correct these. Only then will they be equipped to provide ethical VR services that emphasize compassion, validation, an accurate understanding of chronic pain, awareness of its impact on individuals’ well-being and functionality, and evidence-based practices to reduce pain and improve functionality. The authors of this article (a) define chronic pain, (b) provide examples of chronic illnesses and disabilities associated with chronic pain, (c) examine the demographic characteristics of individuals with the highest rates of chronic pain, and (d) explore common myths about chronic pain, and (e) discuss standards in the 2017 Code of Professional Ethics for Rehabilitation Counselors (Commission on Rehabilitation Counselor Certification [CRCC], 2017) that are especially relevant to providing ethically responsive services to this growing VR clientele.

2 What is chronic pain?

Chronic or persistent pain is defined by the American Chronic Pain Association (ACPA; 2016, p. 9) as “ongoing or recurrent pain, lasting beyond the usual course of acute illness or injury healing, more than 3 to 6 months, and which adversely affects the individual’s well-being. Simply stated, the ACPA describes chronic or persistent pain as “pain that continues when it should not.” Unlike acute pain that serves as a warning signal to protect individuals from further harm, chronic pain is harmful in and of itself. In fact, experts in pain medicine have pointed out that untreated acute pain can lead to chronic pain because it causes functional and structural changes to the nervous system that result in ongoing pain that ceases to be a result of the initial cause and becomes its own separate medical condition (Fine, 2011).

Although the specific causes of chronic pain are often unknown, a variety of sources are linked to chronic pain (Institute of Medicine [IOM], 2011). For example, underlying diseases or medical conditions (e.g., shingles, cancer, low back pain, osteoarthritis) can cause chronic pain. Individuals may experience chronic pain following surgical procedures when nerve damage has occurred or when acute pain persists long after typical recovery periods from the surgery. Inflammation that occurs with conditions such as rheumatoid arthritis and gout is another source of chronic pain. Central pain syndrome, a neurological disorder resulting from damage to the central nervous system (i.e., brain, brainstem, and/or spinal cord; Canavero, & Bonicalzi, 2011), can develop with conditions such as stroke, multiple sclerosis, Parkinson’s disease, brain tumors, limb amputations, brain injuries, and spinal cord injuries. Additional sources of chronic pain include chronic illnesses and disabilities such as migraine headaches, fibromyalgia, rare disorders, other musculoskeletal disorders, trauma, angina, complex regional pain syndrome, repetitive stress injuries, irritable bowel syndrome, spinal disorders, Lyme disease, sickle cell disease, and systemic lupus erythematosus (Interagency Pain Research Coordinating Committee, 2016). Most people with chronic pain have pain in multiple sites, and, in a 2011 study, adults in the United States with pain reported the following types and sites of their pain: severe headache or migraine (16.1%), low back pain (28.1%), neck pain (15.1%), knee pain (19.5%), shoulder pain (9.0%), finger pain (7.6%), and hip pain (7.1%; IOM, 2011). Because of its complexity, chronic pain is a “biopsychosocial condition that often requires integrated, multimodal, and interdisciplinary treatment, all components of which should be evidence-based” (Interagency Pain Research Coordinating Committee, 2016, p. 3).

3 Who has chronic pain?

Approximately 30% – 40% (100 million) of adults in the United States have chronic pain, a number that exceeds the combined number of Americans living with diabetes, heart disease, and cancer (Gatchel, McGeary, & Lippe, 2014). The number of Americans with chronic pain is expected to increase into the foreseeable future due to the aging of the population, advances in medicine and emergency care, increased rates of obesity, trends toward performing surgery on an outpatient basis, and increased public awareness (IOM, 2011).

Populations that are the most vulnerable to chronic pain include women, children, people with low income or limited education, people with limited access to healthcare, African Americans, American Indians and Alaskan natives, Latinos, those at increased risk because of where they live or work, individuals with limited communication skills, and older adults (Interagency Pain Research Coordinating Committee, 2016). Members of these populations also experience health care disparities that prevent them from receiving early intervention for acute pain as well as effective treatment for chronic pain (IOM, 2011). For example, even when experiencing similar painful symptoms as White male patients, both African American and female patients receive lower rates of clinician assessment of pain and higher rates of undertreatment for their pain. In a study cited by the IOM (2011) in their report, Relieving Pain in America, African Americans and individuals of lower socioeconomic status who acquired on-the-job low back injuries were found to be less likely to receive medical care or compensation than other workers with the same injuries.

4 Common myths about chronic pain

A multitude of myths negatively influence others’ perceptions of individuals with chronic pain, and these myths undermine physical, psychosocial, educational, and vocational well-being (Brennan et al., 2007). These myths can also preclude the receipt of appropriate diagnoses, treatment, and rehabilitation. One of the most prominent myths about chronic pain negates the fact that it is a seriously disabling medical condition and views chronic pain as “all in one’s head.” Individuals who complain of chronic pain are often perceived as malingerers, hypochondriacs, attention seekers, emotionally unstable, fakers, exaggerators, drug seekers, lazy, and as using pain for purposes of secondary gain such as an excuse not to work.

Oftentimes, the terms pain threshold and pain tolerance are confused, and this confusion in terms leads to negative perceptions of individuals with chronic pain as weak, fragile, or unnecessarily sensitive to pain. The International Association for the Study of Pain (I ASP; 2012) defines pain threshold as “the minimum intensity of a stimulus that is perceived as painful” (para. 43) and pain tolerance as “the maximum intensity of a pain-producing stimulus that a subject is willing to accept in a given situation” (para 45). Individuals with chronic pain can have a low pain threshold and a high pain tolerance. In fact, in many cases, their pain tolerance is greater than it is for individuals who do not have chronic pain. This high tolerance for pain is indicated by the fact that many individuals continue to participate in daily activities of living and valued roles such as employee despite unrelenting pain.

Another common myth is that, if physicians cannot diagnose the source of pain, the patient is not in pain (Koch & Rumrill, 2017). This myth stems from the traditional biomedical model that focuses on diagnosing and curing acute illnesses as opposed to treating and managing chronic illnesses. Because there are no biomarkers for chronic pain, individuals may be told by physicians that there is nothing wrong with them or diagnose them with unexplained medical symptoms. In some cases, treating physicians may believe that reported pain stems from psychiatric conditions and refer patients to mental health professionals (Hansson, Fridlund, Brunt, Hansson, & Rask, 2011; Holloway, Sofaer-Bennett, & Walker, 2007). These responses may lead both individual patients and other people in their lives to question whether their pain is real (Toye & Barker, 2010).

Also prevalent in American society is the myth that if people do not look like they are in pain, they are not in pain (Hansson et al., 2011; Sim & Madden, 2008; Toye & Barker, 2010). Chronic pain is invisible, and as Smart (2009) noted, individuals with hidden disabilities are often treated by others with suspicion because of the ambiguity of their medical conditions. Also, many chronic pain conditions are episodic. As such, individuals exhibit extreme variability in their functionality, and others often fail to understand this variability. Because of the invisibility of pain along with the others’ beliefs that pain is not real or is exaggerated, individuals with chronic pain are often forced to engage in impression management that requires them to balance not appearing as though they are in too much pain with not appearing as they are in no pain at all (Hansson et al., 2011; Toye & Barker, 2010). Whether or not to disclose to others that they have chronic pain is a difficult decision because it can result in unpredictable reactions. On one hand, it can change others’ perceptions of the person with chronic pain in a negative direction. Family members, friends, employers, and co-workers may respond to the complaints of individuals with chronic pain by ignoring them or changing the subject. They respond in this manner because they believe it is helpful to the individual to divert their focus away from their pain. However, these types of responses only serve to invalidate the individuals’ pain and leave them with no outlet for expressing how difficult it is to live with unrelenting pain and no access to emotional support from others. On the other hand, disclosure can result in increased compassion and support from some as well as enable individuals with chronic pain to receive classroom and job accommodations.

A particularly dangerous myth prevalent in American society is that ignoring pain will make it go away (Koch & Rumrill, 2017). Because of this myth, many individuals delay seeking treatment for acute pain that could signal a serious condition. Delays in seeking medical care also increase the possibility of the progression of acute pain into chronic pain. Associated with this myth is the myth that pain is a natural part of the aging process (Thielke, Sale, & Reid, 2012). Again, this myth is dangerous because pain may signal an injury or medical condition that requires early detection and treatment to prevent a serious medical outcome.

Also potentially dangerous is the myth that individuals can overcome their pain if they just push themselves through it (Koch & Rumrill, 2017). The “no pain, no gain” adage that dominates American culture is observed in athletes who compete in sports despite pain and risk complications and ongoing pain. For individuals with chronic pain, pushing themselves beyond their limits can have serious consequences such as exacerbating pain, causing pain flare-ups, and reducing functionality.

A final myth is related to the treatment of chronic pain with opioid analgesics. Many believe that treatment of chronic pain with opioid analgesics will cause excessive sedation, turn people into “zombies,” stop their breathing, require constant increases in dosages, and cause drug addiction (Brennan et al., 2007; Thernstrom, 2010). Although treatment of chronic pain with opioid analgesics can have serious consequences, for many individuals these medications often mean the difference between spending their lives in bed or actively engaging in daily activities such as school, work, socialization with friends, community participation, and family activities. However, because of myths about opioid analgesics, many individuals with chronic pain who use opioid analgesics are perceived as drug addicts.

5 Why is it necessary to consider ethical issues in providing rehabilitation services to individuals with chronic pain?

Chronic pain is the leading cause of work disability in the United States (Koch & Rumrill, 2017; Strauser, 2013), and VR professionals are likely to have numerous individuals on their caseloads who experience chronic pain. Additionally, because the prevalence of chronic pain in the United States is expected to continue to increase, it is also likely that the numbers of VR clients with chronic pain will also increase (IOM, 2011). Chronic pain associated with the primary disabilities for which individuals receive VR services may be overlooked by VR professionals, and the many myths associated with chronic pain can potentially negatively influence VR professionals’ perceptions of and responses to these clients. Finally, misunderstandings about chronic pain and its treatment (e.g., opiophobia, opioignorance; Brennan et al., 2007; Thernstrom, 2010) can result in the provision of inaccurate or incomplete information about treatment options for clients.

Again, it should be noted that all too common experiences reported by individuals with chronic pain when seeking help from medical, health care, and VR professionals include invalidation of their pain, diagnostic uncertainties and misdiagnoses; being treated as drug seekers or malingerers; and being told “it’s all in your head” (Koch & Rumrill, 2017). Injured workers who receive workers compensation benefits and report ongoing pain long after surgery or healing of their initial injury are especially vulnerable to being treated with suspicion. In some cases, video surveillance may be used to document that they are “faking” their injuries. However, VR professionals must keep in mind that these individuals often have no option but to continue to engage in activities of daily living (e.g., yard work, home repairs) despite their pain because they do not have the financial resources to hire someone to perform these activities. Surveillance of their performance of these activities is not necessarily evidence of “faking” their pain to avoid returning to work. Likewise, observing individuals engaging in social activities such as going to lunch with friends, showing no signs of pain, smiling, and laughing is not evidence that these individuals are not in pain. Continuing to socialize is a healthy strategy for maintaining physical and emotional well-being in the presence of ongoing pain. Finally, surveillance often fails to follow individuals after engaging in strenuous activities of daily living or participating in social activities. In many cases, individuals may experience increased pain, flare-ups, and reduced functionality caused by these activities and must recuperate with extensive periods of rest.

Lack of access to appropriate treatment and VR services resulting from ignorance and misunderstandings about chronic pain is a moral and ethical issue. Furthermore, Brennan et al. (2007, p. 12) stated that “unreasonable failure to provide adequate pain relief constitutes negligence.” VR professionals have an ethical obligation to establish working alliances with these clients that are based on validation of their pain and to include services on VR plans that will reduce their pain and improve their functionality to the extent that they can achieve their self-determined VR goals. However, these ethical obligations may present challenges for practitioners.

6 Ethical principles and considerations in providing VR services to individuals with chronic pain

Although all the sections of the Code of Professional Ethics for Rehabilitation Counselors (CRCC, 2017) guide VR counselors to ensure that they engage in ethical practices, we have selected several sections of the Code that may present unique challenges for all VR professionals when working with clients who have chronic pain. We provide a rationale for why these sections may be challenging and offer suggestions for addressing these challenges in a manner that is ethically responsive to the multifaceted needs of individuals with chronic pain.

6.1 Respecting diversity

VR professionals have an ethical obligation to respect and value the diversity of all clients. This ethical principle is especially relevant to individuals with chronic pain for two reasons. First, although each individual with chronic pain is unique, those most affected by chronic pain are from traditionally underrepresented groups. These are the same groups that rehabilitation researchers have established are unserved or underserved by the state-federal VR program (Koch & Rumrill, 2017). Secondly, chronic pain is a condition that is impossible to fully comprehend unless one personally experiences it. The shared experience of disability, stigmatization, invalidation, and discrimination among people with chronic pain, arguably, constitutes a unique subculture for this disability population. Because of their shared experiences, numerous support and self-advocacy groups and organizations have been founded to combat the stigma associated with chronic pain and to advocate for better access to appropriate pain treatment.

To respect diversity, rehabilitation counselors must take inventory of their own potential cultural stereotypes and biases related to individuals most affected by chronic pain as well as their stereotypes and biases about individuals with chronic pain in general (Koch & Rumrill, 2017). They must then educate themselves about the facts related to race, gender, gender identity, sexual orientation, age, socioeconomic status, and chronic pain (e.g., the intersectionality of these identities with pain; chronic pain conditions that are overrepresented in specific populations; cultural myths and stereotypes about chronic pain; the pervasive problem of ineffective and undertreatment of chronic pain in marginalized populations).

Furthermore, VR professionals must understand that, due to prior prejudicial treatment by health care and human services professionals, individuals with chronic pain may anticipate the same from them (Koch & Rumrill, 2017). In these cases, VR professionals should not take it personally or view these clients as uncooperative or difficult. Rather, they should prove negative anticipations wrong and treat these individuals in a manner that promotes feelings of being understood, respected, and validated. Of utmost importance is to ensure that individuals with chronic pain experience a sense of hope after meeting with VR professionals. Finally, VR professionals should incorporate cultural practices used by clients into plans for the treatment and management of chronic pain. These practices may include prayer, meditation, complementary medicine, spiritual healing, and counseling with elders or religious leaders.

6.2 Professional disclosure statement

In explaining the roles and functions of rehabilitation counselors and procedures that may be used in the rehabilitation process, rehabilitation counselors must understand how chronic pain may influence participation in rehabilitation planning and discuss with clients how to address pain interference that may affect their participation. This requirement should apply to the practices of all VR professionals. Clients with chronic pain should also be informed about agency, programmatic, or organizational policies regarding drug use, whether it is legal or illegal. Furthermore, VR professionals have a responsibility to advocate for policy changes that may discriminate against individuals with chronic pain. They should also be knowledgeable about federal and state laws regarding use of medical marijuana or opioid analgesics so that they can accurately inform their clients. Finally, it is important to discuss with clients employer drug policies or drug testing and educate employers about use of medications for pain management rather than for recreational purposes.

6.3 Support network involvement

It is imperative that VR professionals involve members of clients’ social networks in the VR process only when they are viewed as supportive and helpful by the client with chronic pain (Koch & Rumrill, 2017). As previously stated, individuals with chronic pain may experience invalidation and lack of understanding and support from family members and friends. In these cases, VR professionals can encourage clients to consider involving people other than their family (e.g., friends, support group members, advocates) whom they identify as strong allies.

Clients may also desire to enlist the involvement of VR professionals to educate family members and friends about chronic pain and its consequences. Sometimes when this information comes from a professional, it is more likely to be believed and taken seriously than when it comes only from the individual with chronic pain. Additionally, VR professionals can encourage clients to enlist the support of medical and healthcare providers to educate significant others. Inviting family members to support group meetings can also help to better inform family members as well as provide them with an opportunity to see that the client is not the only one struggling with the issues that the family has treated as invalid. Team meetings of all service providers designated on the client’s VR plan can be scheduled by the VR professional for the sole purpose of educating family members and answering their questions. Also, VR professionals can assist clients to obtain educational resources to provide to family members.

Finally, VR professionals should be familiar with local and on-line support groups for individuals with chronic pain. These support groups can have many benefits for individuals with chronic pain. They can reduce the sense of isolation that people with chronic pain often experience, provide a safe place for them in which they feel validated and understood, and introduce clients to pain coping strategies used by others that may also be helpful to them (Munir, Randall, Yarker, & Nielson, 2009; Toye & Barker, 2010). However, individuals must be matched with appropriate support groups or they may experience harm instead of help. For example, referring individuals newly diagnosed with a condition that causes chronic pain to a group that consists primarily of members who have progressed further in their illness can be discouraging to the newly diagnosed client. For this reason, organizations such as the National Multiple Sclerosis Society offer support groups exclusively for newly diagnosed individuals. Likewise, support groups consisting primarily of members who do not work may not be helpful for individuals with chronic pain who do work or desire to return to work. Wakefield, Bickfield, and Sani (2013) noted that membership in support groups, in and of itself, is not sufficient for individuals to benefit. Rather, the individual must experience a sense of belonging and commonality with other group members to experience the benefits of self-help and support groups.

6.4 Avoid value imposition

All VR professionals have personal beliefs and values that can shape their perceptions of individuals with chronic pain and how pain should be treated. Many values regarding the severity and treatment of chronic pain are based on myths and misperceptions. VR professionals have an ethical obligation to take a personal inventory of their own personal beliefs and values and consider how these may negatively or positively influence their practices. Koch and Rumrill (2017) recommend that, in taking inventory, professionals ask themselves questions such as: How do I interpret and respond to individuals’ complaints of pain? Do I take their complaints seriously and respond with empathy and compassion or do I suspect their pain is exaggerated or not real? What are some of my biases about pain management and treatment? Do I view some chronic pain conditions as real and others as imaginary? How are individuals with chronic pain viewed within the setting where I work, and how have these views affected my own perceptions? What sources of information will challenge my biases and provide me with a better understanding of chronic pain and its treatment? Following their personal inventory, VR professionals can then (a) educate themselves about the facts to replace assumptions that are inaccurate and (b) increase their knowledge about specific conditions associated with chronic pain.

Additionally, VR professionals should understand the difference between certain terms that are often confused and can lead to misunderstandings about the sources and severity of pain as well as the advantages and disadvantages of treatment options. For example, people with chronic pain are often viewed as overly sensitive to pain, and their oversensitivity is attributed to personal characteristics such as weakness, hypochondriasis, attention-seeking, or laziness. These inaccurate perceptions, as we have discussed, stem from confusion between the terms pain threshold and pain tolerance. Likewise, negative perceptions regarding the treatment of chronic pain with opioid analgesics are partially attributed to confusion between the terms addiction and dependence. The National Institute on Drug Abuse (2016, para. 1) defines addiction as a “chronic, relapsing brain disease that is characterized by compulsive drug seeking and use, despite harmful consequences.” Drug dependence, which can occur with long-term opioid use, is the body’s adaptation to a drug that requires larger doses to achieve the drug’s desired effect and results in withdrawal symptoms if the individual abruptly stops taking it (American Chronic Pain Association, 2015). With respect to dependence, many individuals with chronic pain do not need to increase the doses of their medications unless their pain has increased. However, if they abruptly stop taking these medications, withdrawal symptoms can occur. VR professionals should be familiar with this terminology so that they do not treat individuals who use opioid medications with suspicion and judgment or discourage the use of this treatment option if it has been recommended by a physician who has expertise in pain management, is closely monitored, and is effective at reducing pain and improving functionality.

6.5 Advocacy

Although advocating for the rights of individuals with disabilities and teaching clients how to self-advocate are important services for all VR clients, these services have unique implications for individuals with chronic pain. Because chronic pain is a highly stigmatized, hidden disability, individuals with chronic pain often struggle with issues of impression management and disclosure. Impression management involves efforts to balance (a) not appearing too sick, needy, or dependent to avoid misinterpretations of their motives with (b) not appearing too well to avoid being undiagnosed, underdiagnosed, or undertreated for their pain (Toye & Barker, 2010). VR professionals can offer interventions (i.e., instruction and role plays) to assist with decision-making about disclosure and requesting accommodations. Mindfulness strategies (e.g., breathing exercises, meditation, body scans) can be useful in reducing the emotional distress associated with the prospect of making a disclosure and requesting accommodations (Koch & Rumrill, 2017).

Additionally, VR professionals can research websites of pain advocacy organizations to identify strategies and resources for supporting individuals with chronic pain to be self-advocates. They can also refer clients to these websites to identify self-advocacy approaches they can use themselves. These resources provide tools for partnering with people with chronic pain to reduce stigma and increase access to appropriate treatment. Finally, VR professionals can play an important role in assisting clients to develop health literacy and assertiveness skills for effectively communicating with physicians and health care providers.

6.6 Boundaries of competence

Providing services within the boundaries of practice may be challenging for VR professionals when working with individuals with chronic pain. These challenges may be especially pressing for professionals who have strong biases against certain treatment options (e.g., medical cannabis, opioid analgesics, complementary approaches) and subsequently fail to inform (or misinform) clients about these options. Likewise, VR professionals who themselves experience chronic pain must refrain from offering medical advice (i.e., recommending medications or other treatment modalities that are effective for the professional). Although providing medical advice is outside the scope of practice of VR professionals, it is within their scope of practice of many VR professionals to inform clients about the various treatment options that are available to them and to make appropriate referrals (i.e., to specialists in pain medicine) for evaluation and exploration of the risks and benefits of available options. It is also within the rehabilitation counselor’s scope of practice to provide counseling and guidance to address adaptation to chronic pain; client feelings of being misunderstood, stigmatized, invalidated, and discriminated against; pain management strategies and resources; coping skills; disclosure decisions; and accommodation planning. Rehabilitation counselors should not underestimate the therapeutic value of the counseling and guidance they provide to clients with chronic pain.

Rehabilitation counselors and some other VR professionals also have the expertise to screen for co-occurring conditions such as anxiety, depression, and substance use disorders. When it is suspected that individuals may be struggling with these co-occurring conditions, these concerns should be addressed with clients, and appropriate referrals for evaluation and treatment should be made to clinicians who treat co-occurring conditions but also have expertise in chronic pain. These specialists may include clinical rehabilitation counselors, rehabilitation psychologists, psychiatrists who have expertise in treating individuals with chronic pain, and other mental health professionals with this dual expertise. As a caveat to keep in mind when making mental health referrals, VR professionals should reassure clients that these referrals are not being made because the validity of the client’s pain is questioned. Rather, it should be clearly explained that such referrals are made because of the magnitude and intrusiveness of chronic pain into one’s life (Koch & Rumrill, 2017).

6.7 Avoiding harm

When providing VR services to individuals with chronic pain, avoiding harm includes both the prevention of physical and psychological harm. Avoidance of physical harm occurs when the VR professional does everything possible to ensure that meetings with the professional and all providers involved in the VR assessment and planning process cause minimal pain. Appointments should be made during times when the individual is in the least amount of pain, and VR professionals should be alert to signs of fatigue or discomfort and adjust meetings accordingly (i.e., shorten the length of meeting or schedule a phone meetings). When meeting with clients, VR professionals should ask clients what they can do to increase their physical comfort. For people with certain chronic pain conditions, even small gestures such as a firm handshake, pat on the back, or squeeze of the shoulder can cause pain. VR professionals should also set up their offices to avoid hazards that may lead to tripping or bumping into furniture. Additionally, they should offer different seating options as well as opportunities for clients to move around as needed. During these meetings, they should periodically check in with clients to see how they are feeling. VR professionals who provide on-the-job supports should be alert to work activities that increase pain and identify appropriate accommodations to minimize pain. In these cases, the VR professional and client may work with other rehabilitation professionals such as physical and occupational therapists to (a) assess worksites and job functions and (b) identify and implement modifications necessary to minimize pain. Making appropriate referrals to outside providers is also imperative to avoiding physical harm to clients. Some treatments may exacerbate, rather than alleviate, pain. VR professionals should consult with the client as well as specialists in pain medicine or specialists in treating the specific condition causing the pain to ensure that appropriate referrals are made and to avoid causing physical harm.

More complicated is the need to avoid causing emotional harm. When clients say they are in pain, they must be believed and should be treated with empathy and validation rather than judgment and suspicion. Otherwise, the VR professional may cause the client to become emotionally distressed. Invalidation of one’s pain can result in increased pain as well as feelings of hopelessness, despair, and isolation. Even statements meant to be helpful can be harmful to the client. Examples of these types of statements include: “Be thankful it’s not life-threatening” r “At least you don’t have rheumatoid arthritis,” “ At least your condition isn’t progressive,” “It could be worse,!” or “A positive attitude goes a long way!” Tone of voice and facial expressions can even be harmful, especially if they are interpreted by the client as being judgmental, condescending, or invalidating.

Relatedly, VR professionals should be cautious not to misinterpret client pain behaviors as lack of interest, failure to adhere to treatment and VR plans, or lack of motivation. What may appear to be a lack of interest during appointments may actually be fatigue or pain flare ups that cause irritability as well as difficulties with attention, memory, and concentration. In these cases, appointments may need to be shortened or rescheduled. Missed appointments may result from a variety of factors other than lack of motivation including pain flare ups, “brain fog” that can cause forgetfulness, and client perceptions that the VR professional invalidates his or her pain. When clients miss appointments, it is important to contact them, and, in cases in which these missed appointments are due to flare-ups or forgetfulness, to develop back up plans, reminders of appointments, alternatives to in-person appointments, or scheduling of appointments during times of the day when clients are in the least amount of pain. When clients perceive that the VR professional invalidates their pain, these professionals should engage in reflective practice to identify biases that may be affecting how they interact with these clients. Then they should seek out consultation and continuing education to correct these biases. Additionally, they should engage in thoughtful discussions with clients about how to be more empathic and affirming.

6.8 Culture and diversity in research

In conducting research on chronic pain, VR researchers should ensure that their research samples are representative of the demographics of individuals with chronic pain. Research is needed to examine cultural influences on beliefs about chronic pain and its sources, help-seeking behaviors, and culturally-appropriate VR practices. Research is also needed to examine (a) practitioners’ general biases about chronic pain as well as cultural biases in relation to pain that prevent individuals from receiving appropriate treatment and rehabilitation and (b) strategies to ensure that individuals from vulnerable populations have equal access to appropriate treatment and VR interventions.

Because individuals with chronic pain are the “best experts” on how chronic pain impacts their lives and often find research to be invalidating or misrepresentative of their experiences, researchers should focus on conducting investigations of problems that are important to these individuals (e.g., accessing appropriate treatment, reducing stigma about chronic pain). Measurement instruments can then be developed with items that represent the actual pain experiences of individuals with chronic pain rather than those that are presumed by clinicians and researchers to be their experiences.

6.9 Precautions to avoid injury in research

Many individuals with chronic pain are constantly researching ways to minimize their pain, and they often read empirical articles written by rehabilitation researchers. In many cases, they view the constructs and measurement instruments used by these researchers to be misrepresentative of their lived experiences and even potentially harmful. To ensure that research is helpful rather than invalid and potentially harmful, researchers should involve individuals with chronic pain in a participatory action approach to identify methods to address their concerns rather than the concerns generated by researchers. Again, foremost among their concerns are reducing the stigma of chronic pain and increasing access to appropriate and effective treatment and rehabilitation.

Several other approaches to conducting research that is helpful rather than harmful are recommended. First, researchers can conduct qualitative meta-syntheses of prior research on the experiences of individuals with chronic pain to identify constructs and variables important to them. They can also use focus groups to obtain input from individuals with chronic pain when designing or modifying measurement instruments. Additionally, they should avoid using constructs that invalidate individuals’ experiences or lead to further stigmatization. For example, many individuals with chronic pain are offended by the term “pain catastrophizing,” believing that it implies that their pain is “all in their heads.” Using the term “pain cognitions” may be less stigmatizing and more accurately represent individuals’ cognitive responses to chronic pain.

Measurement instruments should be designed to include both deficit- and asset-oriented items to obtain a better understanding of how individuals cope with chronic pain as well as factors that both impede and promote coping. Researchers must also keep in mind that pain severity, fatigue, activity level, and mood fluctuate from day to day or even within the same day. Many individuals have ongoing pain as well as unpredictable flare-ups that may last days or months. Others, such as those with chronic migraines, have unpredictable pain that may last from hours to days. In the midst of excruciating flare-ups or migraine attacks, it is understandable that individuals would experience “catastrophic” thinking along with symptoms such as anxiety and depression. However, once the flare-ups or migraine attacks abate, they are likely to more optimistically think about their ability to cope with their pain, and their depressed or anxious mood is likely to be reduced or cease altogether. Therefore, longitudinal research using advanced statistical modeling techniques is recommended to measure the complex interactions among pain cognitions, symptoms of anxiety and depression, pain intensity, flare-ups, unpredictability of pain, activity level, coping thoughts and behaviors, and environmental factors influencing pain experiences. This approach to examining the intersectionality of illness- related variables, individual characteristics, and environmental factors influencing pain cognitions will help researchers to better understand the complexity of chronic pain and assist VR professionals to use individualized and targeted interventions to facilitate VR goal achievement.

7 Conclusions

Chronic pain impacts millions of Americans. This population is widely misunderstood by medical professionals and negatively portrayed in society at large. Misunderstandings and misperceptions of this population have led to stigma about chronic pain and those who live with chronic pain. VR professionals have an ethical responsibility to serve this population with the same care and professionalism as they do with individuals from any other chronic illness or disability populations. They should be aware of conditions that cause chronic pain and the associated vocational and psychosocial implications of these conditions.

VR professionals have a responsibility to not only provide ethically responsive services to individuals with chronic pain, but also to actively engage in advocacy efforts and conduct research that promotes client well-being and improved quality of life. Advocacy efforts can help to reduce the stigma and misunderstanding about chronic pain as well as increase the trust of clients with chronic pain seeking services. Research in the area of chronic pain is sometimes misrepresentative of the lived experiences of individuals with this increasingly prominent condition, despite the fact that rehabilitation researchers represent a unique perspective on serving and helping these individuals. There is a clear need for further research in this area that more accurately represents the lived experiences of individuals with chronic pain.

Conflict of interest

None to report.

References

American Chronic Pain Association. (2015). ACPA resource guide to chronic pain medication and treatment: 2015 edition. Retrieved from https://theacpa.org/uploads/documents/ACPA_Resource_Guide_2015_Final%20edited%20(3).pdf

Brennan

, Carr

D. B.

, & Cousins

(2007). Pain management: A fundamental human right, Anesthesia & Analgesia, 105(1), 205–221.

Canavero

, & Bonicalzi

(2011), Central pain syndrome: Pathophysiology, diagnosis and management. Cambridge University Press.

Commission on Rehabilitation Counselor Certification. (2017), Code of professional ethics for certified rehabilitation counselors (CRCs) and Canadian certifiedrehabilitation counselors (CCRCs). Schaumburg, IL: Author.

Fine

P. G.

(2011). Long-term consequences of chronic pain: Mounting evidence for pain as a neurological disease and parallels with other chronic disease states, Pain Medicine, 12(7), 996–1004.

Gatchel

R. J.

, McGeary

D. D.

, McGeary

C. A.

, & Lippe

(2014). Interdisciplinary chronic pain management: Past, present, and future, American Psychologist, 69(2), 119.

Hansson

K. S.

, Fridlund

, Brunt

, Hansson

, & Rask

(2011). The meaning of the experiences of persons with chronic pain in their encounters with the health service, Scandinavian Journal of Caring Sciences, 25(3), 444–450.

Holloway

, Sofaer-Bennett

, & Walker

(2007). The stigmatization of people with chronic back pain, Disability and rehabilitation, 29 (18), 1456–1464.

Institute of Medicine. (2011), Relieving pain in America. Washington, DC: National Academies Press.

10.

Interagency Pain Research Coordinating Committee (2016), National pain strategy: A comprehensive population health-level strategy for pain. Washington, DC: Department of Health and Human Services.

11.

International Association for the Study of Pain (2012). I ASP taxonomy. Retrieved from, https://www.iasp-pain.org/Taxonomy#Painthreshold.

12.

Koch

L. C.

, & Rumrill

P. D.

(2017), Rehabilitation counseling and emerging disabilities: Medical, psychosocial, and vocational aspects. New York, NY: Springer Publishing Company.

13.

Munir

, Randall

, Yarker

, & Nielsen

(2009). The influence of employer support on employee management of chronic health conditions at work, Journal of Occupational Rehabilitation, 19(4), 333–344.

14.

Sim

, & Madden

(2008). Illness experience in fibromyalgia syndrome: A metasynthesis of qualitative studies, Social Science & Medicine, 67(1), 57–67.

15.

Smart

(2009). Disability, society, and the individual (2nd ed.). Austin, TX: Pro-Ed.

16.

Strauser

D. R.

(2013), Career development, employment, and disability in rehabilitation: From theory to practice. New York, NY: Springer Publishing Company.

17.

Thernstrom

(2010). The pain chronicles: Cures, myths, mysteries, prayers, diaries, brain scans, healing, and the science of suffering. New York, NY: Farrar, Straus and Giroux.

18.

Thielke

, Sale

, & Reid

M. C.

(2012). Aging: Are these pain myths complicating care?The Journal of Family Practice, 61(11), 666.

19.

Toye

, & Barker

(2010). Could I be imagining this?’– The dialectic struggles of people with persistent unexplained back pain, Disability and Rehabilitation, 32(21), 1722–1732.

20.

Wakefield

J. R.

, Bickley

, & Sani

(2013). The effects of identification with a support group on the mental health of people with multiple sclerosis, Journal of Psychosomatic Research, 74(5), 420–426.