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American Chronic Pain Association, Rocklin, CA, USA
Abstract
Support groups for people with pain are one area that few, if any, health care professionals think about when treating a person with pain. Yet, the goal of pain management is to help the person move from patient back to a functional person. Even with the best medical care and pain management programs, the job does not stop there. Living with pain is a lifelong commitment that will require the person with pain to remain an active part of their care. It is difficult to go it alone, especially if you do not get the support you need within your personal community. Having a place to go to receive positive reinforcement from peers will allow for continued personal growth and understanding in managing pain. This chapter will focus the importance of peer lead groups in helping the person with pain maintain their wellness through peer lead support groups. We will also explore how such groups should be designed to ensure positive reinforcement of the necessary coping skills. Peer lead groups for people with pain need to be focused on the needs of the person attending the group. It is in establishing a peer lead group that shares responsibility of the logistics, governance, group goals and programming that determines the final success.
Just as important is informing the community about the availability of the group to health care providers, people with pain and their families. The process can be made easier if the person has a “roadmap” to follow.
Why Peer Lead Groups Are Needed
Imagine if your life were stopped short by an injury or illness that prevented you from doing your daily routine. Living with any chronic disease or illness can be difficult at best. The inability to maintain a normal lifestyle prevents the normal daily interactions that fill the days with meaningful activities. When one loses their ability to function, they lose all hope that there is anything beyond the day-to-day suffering. Their entire being becomes lost in the veil of pain that seems to fall over even the smallest hopes and abilities. They lose their identity. While there are many things that might help, knowing that you are not alone is critical. Being able to identify with someone else is comforting and the most important components of a peer lead group. The aim of this chapter is to help you understand the value of peer groups, how to establish a group including such things as governance, funding, publicizing the groups, meeting formats, and maintaining a group.
The Problem of Pain
The annual total of both direct and indirect costs for chronic pain are estimated to be as high as $294.5 billion per year (National Academies of Sciences and Institute of Medicine 2001), with back pain alone estimated to cost in excess of $100 billion per year (Katz 2006) (see also May 2011).
While the enormity and the cost of chronic pain of these numbers may be surprising, to people who must live with pain the numbers validate that they are not alone and the problem of pain. What the numbers do not provide, however, are the human costs of pain (see also Palermo 2011). A person with pain finds that every plan they make is controlled by the fear of not knowing; not knowing how they will feel, the intensity of their pain, how well they will sleep and if they will have the energy to follow through with their plans. Fear of the pain controls the person and it is vital that the fear is addressed (see also Donovan et al. 2011; Palermo 2011). There is no one better to understand these fears than another person with pain.
Many of us define ourselves by what we can accomplish in a day. As our ability to function decreases, so does our self-esteem. There is a point in the long difficult road from a functional person to a dependent patient that any hope for a better tomorrow disappears. In some ways, we believe that we have failed; failed to benefit from all that our health care providers have done for us. Many lose all hope that life will improve so they seek out a way to relieve their pain. They are willing to do almost anything if someone promises a cure or relief.
More than anything, a person with pain needs validation; to have his or her health care provider believe their level of pain, their desire for relief and hope for tomorrow (see also Palermo 2011, This Volume). One experiences many feelings when pain invades our life. Pain is invisible and it is not always at the same level of intensity. Having good days intermingled with more difficult days where abilities are greatly reduced creates a sense of self-doubt and fear. It is these feelings of self-doubt and fear that needs to be addressed if any type of improvement is possible.
Window of Hope
As pain consumes our very being, hope can die (see also, Coulehan 2011; Penson et al. 2011). While we try to make others understand the impact the pain has on our very being – both body and mind – no one can really understand. That is unless they also are living a life filled with pain. There is a connection that happens when there is a common denominator that brings them together, even if it is chronic pain. Suddenly there is no need to explain. No need to explain why you can function 1 day and then are unable to do anything for the next 3 days. When you are in a group of your peers – people with pain – you are immediately validated no matter what you may be able to do at any given moment. You realize, perhaps for the first time in a very long time that you are not the only one who is trying to live with persistent pain. There is a real sense of relief to know that there is another person who you can talk with that will understand how some of the most remedial task can turn into overwhelming obstacles. There is a real sense of hope in listening to other in the group talk about how far they have come that provides a sense of hope that perhaps tomorrow could be better.
Value of Peer Support Groups
Being part of peer lead support group means that you no longer have to defend your pain, how you look, or your fluctuation in your ability to function. Defenses that have become a part of you are no longer necessary. Everyone in the group understands the confusion of long-term pain. They are accepting of you no matter what your ability. It is the validation that they provide that, for many, allows them to take their first steps on their journey from patient to person.
When pain becomes the unwelcomed guest in your life it can eat away at your ability to function. With each activity that you erase from your life, a small part of who you thought were also disappears. At some point, you find that you define yourself by your disabilities rather than your abilities. However, when you become part of a peer group of others who understand what it is like to live with pain, you feel a sense of belonging. In watching other members focus on their abilities rather than talking about their disabilities, one can find encouragement to at least try moving forward one step at a time.
The simple act of being in a group provides a sense of community and belonging that was lost long ago. You are now part of a community of like-minded people who are willing to work within your limits to ensure that you are included in activities. Being part of a group of friends is something that the pain took away a long time ago. There is no need to justify any of your actions, they understand. The isolation that your pain created fades as you become a more active part of a group of your peers. This may being you one step closer on as you travel on your journey from patient to person.
Peers understand the challenges the simplest of tasks can become. They can share their real life knowledge and experience of how to accomplish the task, even if it takes longer. It is the change in how one begins to approach life. Instead of focusing on all the disabilities the pain has created, with the help of peers who understand the challenges of living with pain can help others look at their abilities. A positive attitude can be one of the most important outcomes in being involved with a peer support group.
Types of Groups
There are a number of different types of groups that are available today. Each one has its own advantages and some disadvantages.
Peer lead groups provide a level playing field. What that means is that each person who is a part of the group shares the same concerns as all the other members. These groups can focus on the issues that brought them together and exploring way they can begin to manage all the obstacles created because of the pain. There tends to be less focus on specific pain problems and more focus on managing the pain. There is usually no cost to attend these groups.
Pain specific groups are designed to bring people together that all have the same condition. This means that everyone in the group may all have fibromyalgia. While it provides the validation and support a person needs, it can also provide specific information about the condition. Group members can share resources they have found to better understand the current research and treatments offered. The one drawback to this kind of group is that because they all share the same condition they often compare their progress, medication and treatment with each other. It is important to make sure that each person in the group understands that they are all individuals and what works for one may not work for the other. There is usually no cost to attend these groups.
Therapy groups are usually facilitated by a health care professional. While they bring together groups of people who share a common bond, the tone of the group is often very different from a peer lead groups. People who attend therapy groups usually have different expectations. They attend these groups as part of their treatment plan. While they are in a group of their peers it is a completely different atmosphere. In peer lead groups there should be no medical advice or treatments offered. Therapy groups are just that, therapy be it to change behaviors or attitudes. There may be a cost for attending this type of group.
Educational groups that meet for a set number of weeks are typically part of a pain management program that are taught by hospital or clinical staff. They have a set curriculum and once the sessions are over, there is rarely any other support group available to them. These groups are useful as first steps in the journey from patient to person, but too often only scratch the surface of what is really needed for a person to better manage their pain. There is usually a cost for this.
Aftercare groups can be an important part of one’s ability to maintain all that they learned and the progress they made during educational groups. They are usually open-ended and are available to anyone who has completed a pain program for as long as they feel they need it. There is often a cost to attend these groups, but they may be available without any charges.
Groups based on demographics are not as common as the other types of groups, however they do provide a unique connection for its members. These types of groups focus on a specific health problem that is shared but is also limited by a specific demographic such as age, vocation or gender. However, when it comes to living with pain there is such a strong identification with each other that age, gender or any other issues never really prevents the group from moving forward.
Governance of Group
Having a strong foundation for any group is important to its ongoing success. Before any decisions are made, it needs to be determined how you want to structure the group. If the idea is to establish a community-based group that will meet to discuss, share and encourage each other through difficult times, then governance is not so important. However, if you want to formalize the group and grow into a recognized organization that can develop as the need arises, then it is important to begin to build a foundation. One way to build this foundation is to develop a board of directors. Establishing a board of directors for a group designed to help people with pain can be problematic. People who are already struggling with managing their pain have limited energy so the best rule of thumb is to keep the board as simple as possible.
A board of 3 of 4 people would be significant to begin. The people establishing the group will be the ones to determine what they want to see over time with the group as it grows. It is helpful to have people with a variety of skills that will support the needs of the group. Some of the skills to consider are people who are good with finances, writing letters, knowing who and how to reach the other community and perhaps a health care provider that would be available to provide support to the board members.
Funding
Funding the group will again depend on what the needs of the group are. The need for funds will also be a determining factor in the governance of the group. If you only want to have a free will offering to cover incidental costs, then the offering would support the effort. However, if funds are needed for rental fees on a meeting room, supplies, postage and copying, then funding the group becomes more difficult. This group may have to look to the community for support through donations and small fundraising activities. It is only when you have large expenses that one would think about obtaining a formal tax-exempt status. With that comes a great deal of responsibility and might be more than the members are willing to do. Affiliating with another established organization might be the best alternative.
Related posts:
Educating Patients and Caregivers About Pain Management: What Clinicians Need to Know
Palliative Care Clinical Trials: Generalizability and Applicability in Hospice and Palliative Care Practice
Pain Assessment Tools in Palliative Cancer Care
Pharmacogenetics of Pain: The Future of Personalized Medicine
Suffering, Hope, and Healing
Neurosurgical Interventions for the Control of Chronic Pain Conditions
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