Pain is “all in your head.” Although we our brains process the perception of pain, this does not mean that pain is imaginary when the source of pain is not well understood. Pain is all too real to the person who lives with it on a daily basis
Pain is just something one has to live with. Pain traditionally has been viewed as an inevitable consequence of a disease or condition. The fact is most pain can be relieved with proper pain management
Pain is a natural part of growing older. While pain is more common as we age, because conditions that cause pain (e.g., arthritis, degenerative joint diseases, cancer, shingles, osteoporosis) are more frequent in older adults, it should not be something people have to endure untreated
The best judge of pain is the physician or nurse. There is little relationship between what a physician or nurse might “guess” about their patient’s pain and actual pain experience. The person with pain is the authority on the existence and severity of his/her pain. The self-report is most reliable indicator
Seeking medical care for pain is a sign of weakness. Pain carries a stigma, and many people hesitate talking about their pain and how it affects their daily life; they also do not want to be considered a “bad patient”
Use of strong pain medication leads to addiction. Many people living with pain, and even some healthcare practitioners, falsely believe that opioid pain medicines are universally addictive. As with any medication, there are risks, but these risks can be managed when these medicines are properly prescribed and taken as directed. For more information about safety issues related to opioids and other pain therapies, visit http://www.painsafe.org
So for any educational effort to be successful, it is important not only to address gaps in knowledge, but also attitudes toward pain and pain management. Stoicism, fears of opioid addiction, and cultural beliefs all affect the use of, and adherence to, pain therapies.
When educating an affected individual or caregiver about pain, it is also essential to consider the barriers that might already be hindering quality pain care. Such barriers can be contributed to the person with pain, healthcare providers, and the health system (see Table 5.2).
Clinician barriers In clinical encounters with their patients, healthcare providers may have: |
•Gaps in knowledge due to limited training in pain management |
•Inadequate pain assessment skills |
•Negative attitudes toward prescribing opioids due to side effects, concerns over tolerance, and addiction |
•Apprehension prescribing opioids due to fears of regulatory scrutiny |
•Belief that treating pain takes too much time and effort and may not relieve patient |
•Limited or no training in providing culturally sensitive care |
Patient barriers During their contact with healthcare providers, the communication skills, psychosocial well-being, and attitudes toward pain of the person with pain may affect their ability or willingness to report pain. They may have: |
•Reluctance to report pain |
•Concern about distracting physicians from treatment of underlying disease |
•Fear that pain is a sign that any underlying disease is worsening |
•Concerns about not being a “good” patient |
•Reluctance to take pain medication |
•Fear of addiction or perception of being an addict (more pronounced among minority patients) (Anderson et al. 2002) |
•Worries about unmanageable side effects (e.g., constipation, nausea, clouded thought) |
•Concern about becoming tolerant to pain medications |
•Poor adherence to prescribed analgesic regimen (Miaskowski et al. 2001) |
Health system barriers The healthcare system has fundamental barriers to effective pain management with its infrastructure, prescription reimbursement, access issues, and regulation of medication. Examples include: |
•Lack of transportation to the physician or pharmacy |
•Low supply or unavailability of opioids at local pharmacy |
•Lack of a home caregiver to assist with administering drugs |
•Limits on the number of prescriptions filled per month |
•Most appropriate treatment either not reimbursed or too costly for the individual/families in need |
•Restrictive regulation of controlled substances |
•Problems of availability of treatment or access to it |
To effectively educate people with chronic pain, providers should strive to:
1.
Recognize the barriers to effective pain treatment that might impede a balanced and complete understanding of pain and options for treatment
2.
Understand what kind of information their patients are seeking and how and where they get their information (i.e., ensure their patients are consulting credible sources and be prepared to address conflicting information)
3.
Integrate strategies that facilitate ongoing dialogue and information sharing, including leveraging teachable moments, skills training (how to define and accurately convey pain experience), encouraging social and psychological support, and advocating on their patients’ behalf
4.
Help their patients better describe their pain and how it impacts daily function and quality of life (See APF’s top 10 tips for explaining your pain to others 2011; available at http://www.painfoundation.org/learn/living/top-ten-tips/)
Understanding Health Information Seeking Can Help Guide Education Efforts
The digital boom has made the Internet a leading source for health information. A February 2011 Pew Internet & Family Life Project survey found that eight in ten Internet users look for health information online and that number continues to grow, even among the older adult population. Sixty percent of survey respondents reported that their online searches influenced treatment decisions with about 40% confirming that their search influenced the decision to seek care from a healthcare provider (Pew Internet & Family Life Project 2011).
It is important for the public to understand the quality of Internet sites and how to determine whether the information is accurate and trustworthy, since there are millions of health-related web sites catering to the growing demand for medical information. Not all web sites are created equal and some may contain false or misleading information. See APF’s web site for Top 10 Tips for Finding Quality Health Information Online, a helpful resource for patients and families (American Pain Foundation 2009). If individuals do not have access to the Internet at home, they may be able to find a computer with online access at their local library, public university, community, and senior centers. Some of these venues hold tutorials about how to start a search. Family members, neighbors, and friends can also help research health information for them.
Understanding how and where people seek healthcare information, as well as what they want to know, is critical for healthcare providers. Awareness of these factors may help providers tailor information, advice, and suggested resources for their patients. Generally, people will use a variety of sources to obtain health information. Many rely on traditional information sources – healthcare professionals, the Internet, books, the media, friends, and family members. Remember, many studies find that healthcare professionals remain among the most trusted source of information. Individuals typically rely on other sources to supplement medical information provided by healthcare professionals.
Repetition in a variety of forms will reinforce desired messaging about content and desired behavioral changes. Studies have shown that 40–80% of the medical information patients receive is forgotten immediately and nearly half of the information retained is incorrect (Kessels 2003).
What Patients Want to Know About Persistent Pain
In general, people living with persistent pain want information or advice on:
1.
How to understand their pain, specifically the cause
2.
What to expect, when they might experience pain, and what it might feel like
3.
Pain treatment options, including pain medication, medical or surgical treatments, and nonpharmacological approaches
4.
How to cope with pain
5.
How pain negatively impacts their lives physically, psychologically, and socially
6.
How to connect with other people with pain to find out what their pain was like, how it has affected their lives, what they are doing to cope, what their doctors suggest in terms of pain relief, and the method of pain relief they found to be most effective
7.
Where to find healthcare providers who manage pain, whom to consult, and various treatments available
These preferences for pain information can also apply to people with other types of pain. APF also periodically surveys its membership and other groups of people living with pain to assess information needs.
Tools for Healthcare Providers
The following pages provide a variety of tools for healthcare providers to use in elevating pain awareness and understanding among their patients.
In-Practice and Community-Based Strategies and Tools to Educate Patients
Learning about their pain condition, what to expect and the options available for relief can empower individuals and give them a sense of control. Of course, limited provider–patient face time can make it much more difficult to cover all critical teaching points during an average clinical encounter. That is why – whenever possible – it is important for healthcare providers to look for and take advantage of teachable moments and maintain an open dialogue with their patients.
Teachable Moments
Each clinician (e.g., physician, nurse, pharmacist, social worker, or therapist) contact is an opportunity to engage in a teachable moment. Using reflective communication methods, such as Teach Back, Tell Back (Teach Back Method 2009), is one example of how to incorporate education during routine, daily contact in the clinical setting. A variety of print, audio, and video materials that are sensitive to literacy levels may be provided in clinical common areas, such as waiting rooms, rest rooms, and exam rooms. Reinforcing the content of these materials is vital during face-to-face clinic time. Incorporating interactive materials that may be used in the home environment and reviewed during office visits not only provides information often missing during periodic reviews, but also encourages involvement by the person living with pain. Moreover, these materials may be verified and reviewed by family members when necessary, and may serve as a quality improvement tool to adjust/tailor the pain treatment plan. For more information, see APF’s Targeting Chronic Pain Notebook as one model (http://www.painfoundation.org/learn/publications/target-notebook.html).
Written Educational Materials
Printed materials in the form of waiting room posters, brochures, self-assessment and pain management checklists, and standardized instructions can help to augment and reinforce information shared during one-on-one consultations. These resources can also help to improve recall of verbal instructions. Other useful material to offer patients include pain diaries (see APF’s Targeting Chronic Pain Notebook, http://www.painfoundation.org/learn/publications/files/TargetNotebook.pdf), newsletters with up-to-date articles about pain (e.g., APF’s Pain Community News, http://www.painfoundation.org/learn/publications/pain-community-news-archives.html) and pain condition fact sheets (e.g., cancer pain, musculoskeletal, neuropathic, arthritis) with pharmacologic and nonpharmacologic treatment options (see APF’s Spotlight series on various types of pain topics at http://www.painfoundation.org/learn). Checklists might be provided to individuals to prompt a discussion with their healthcare provider about pain management or referrals for treatment modalities beyond prescription medication.
Related posts:
Palliative Care Clinical Trials: Generalizability and Applicability in Hospice and Palliative Care Practice
Pain After Traumatic Brain Injury
Chronic Low Back Pain
Hope in the Context of Pain and Palliative Care
Suffering, Hope, and Healing
Neurosurgical Interventions for the Control of Chronic Pain Conditions
Full access? Get Clinical Tree
