Chapter 23

Participating in life roles

Jenny Strong

CHAPTER CONTENTS

Overview

Managing life with persistent pain

Goal setting

Active involvement of the client in decision making

Activity engagement

At the end of this chapter readers will have an understanding of:

1 Why people with pain may discontinue participation in life roles.

2 The way in which a client-centred approach assists clients re-engage in life roles.

3 Methods that can be used to facilitate re-engagement in life roles.

This chapter should be read in conjunction with Chapters 8, 9 and 17, which explained a number of strategies therapists can use with clients, including client education, goal-setting, self-efficacy enhancement, self-esteem development, exercise prescription and coping-skills enhancement.

OVERVIEW

As detailed in Chapter 22, human beings are at their peak of health when they are actively participating in life roles of value to them. This is definitely the case for the person with pain, especially persistent pain. Many people with chronic pain have disruptions to several of these pre-pain occupational roles, and hence to aspects of their lifestyle that are important to them. This chapter will help the reader to understand why such role disruption occurs, and ways in which people with chronic pain can be assisted to re-engage and participate in life roles beyond the paid worker role, which was covered in Chapter 16.

MANAGING LIFE WITH PERSISTENT PAIN

One of the first patients living with chronic pain that I had the privilege to work with was a 50-year-old woman who had suffered facial pain for 12 years due to post-hepatic neuralgia in the distribution of her trigeminal nerve. This case was published in Patient Management (Strong 1989), and republished with permission in 1996 (Strong 1996). Mrs P taught me how, for some people, chronic pain could overtake all valued life roles, leaving one with only the role of ‘patient’. I learnt the importance of not working with the patient in isolation. Each patient or client has an environmental context, which may facilitate or limit participation. While I focused on Mrs P and her valued occupations, I ignored environmental factors, to my peril. The person–environment–occupation model (PEO) provides an important heuristic to guide our work with clients to ensure maximum and sustainable outcomes for our clients (Law et al 1996).

The two scenarios from Reflective exercise 23.1 are almost identical, apart from the first person having a demonstrable and accepted badge of injury, and the second person having no overt sign of injury or disability. People in pain find that others in the community may treat them

Reflective exercise 23.1

1. Imagine that you have broken your leg playing weekend sport. After your visit to accident and emergency, you are discharged home with your leg in a full-length plaster and a set of crutches. You are not to weight-bear on that leg for a number of weeks. Initially you rest at home, but after a week has passed you need to get food into the house, and it would be nice to have a cup of coffee at a coffee shop. At this point, you cannot drive and so you phone a friend, who drives you to the shopping centre. It is so hard to walk with the crutches, so you tell your friend to park in the disabled parking spot. He is reluctant, as he does not have a disabled parking sticker. You say to him, ‘Of course people will see that I have a temporary disability, so it will be fine.’ And so it is. People see you getting out of the car and hobbling in to the shop using your crutches, and continue on with their activities. You get to the coffee shop and it is crowded, but your friend finds a table in the far corner. So you crutch walk over and people politely move out of your way, so you have room to pass.

2. Let’s replay the story, only this time, we will consider the scenario in which you have chronic back pain. You don’t use crutches to walk and you do have a disabled parking sticker on your car. One day, you drive to the shopping centre, planning to meet a friend for coffee in the same coffee shop. You park your car in the disabled parking bay and as you get out of the car a passer-by comes up to you and yells at you, ‘What are you doing? You are so selfish! Get out of the disabled parking space.’ You try to point out that you do have a disabled parking sticker and that you have a disability, but the person mutters at you some more and walks away. You go into the shopping centre, somewhat shaken by this experience. You see your friend in the far corner of the coffee shop, and you gingerly make your way through the crowd to reach him. A number of people bump into you, as they push past you, each bump making your pain increase. When you get to your friend, you say, ‘This is too hard to do,’ and you feel like weeping and/or punching someone.

in a disrespectful way because the others can see no demonstrable badge of injury. People with pain must learn to manage feelings of delegitimacy, which arise when their pain and suffering is not regarded as credible by others (Rhodes et al 1999). One management strategy in this situation would be to withdraw from social settings where one is likely to experience such insensitivity. A number of life roles could be relinquished for this reason, such as instrumental activities of daily living like shopping, social outings and attending sporting events with children.

Chronic pain, like chronic fatigue syndrome, is a condition where people frequently experience stigma (Cohen et al 2012). While stigma refers to a visible mark of disgrace or a stain, such as in leprosy, the invisibility of pain and the incredulity of others creates the stigma for people with chronic pain. Stigmatization is the process whereby the way the community reacts to a person’s pain results in the person being devalued and ostracized (Berger et al 2005, Cohen et al 2012, Goffman 1963).

Additionally, as was illustrated in Chapter 9, the fear of pain escalation or further injury can play a big part in the person in pain giving up doing activities where they might be bumped or jostled. The fear of pain has been seen as more disabling than the pain itself (Vlaeyen & Linton 2000). We well know that inactivity, and more specifically the disuse of muscles, contributes to muscle weakness. Too soon, people with chronic pain may find themselves in a downward spiral, also known as the chronic pain cycle (Strong 1989). They avoid activities or situations where their pain may increase or where they may be subjected to uninformed comment, they do less, they feel less satisfied, they may gain weight, they become socially isolated, their mood is depressed, they begin to feel worthless and lose hope. Once in this cycle, it can be difficult to escape, with the result that people with chronic pain may relinquish all meaningful life roles and be left with only the role of patient. Reflective exercise 23.2 gives the reader an inside perspective to coming to terms with chronic pain.

Unfortunately, at a time when scientific knowledge is expanding at an exponential rate, there is still no one panacea or cure for chronic pain. At the current stage of our knowledge and skill in assessing and treating people with chronic pain, there remain many people for whom a ‘cure’ is not available. The reality for such individuals is that they must learn to manage with pain. Such management typically involves a combination of pharmacological agents, exercises, lifestyle modifications and cognitive adjustments. People with chronic pain must learn to adjust their patterns of living, their dreams and aspirations, and their expectations, to accommodate a chronic pain problem, in much the same way as someone newly diagnosed with multiple sclerosis or a spinal injury must learn to accommodate and adjust. When the person learns to live with the pain, without reaction, disapproval or trying to reduce it, then they have accepted the pain. It has been posited by McCracken (1998) that acceptance is an important step in successful adjustment. The acceptance of pain has been shown to be associated with less pain, less disability, less depression and anxiety, and better activity engagement (McCracken & Eccleston 2003, 2006). Acceptance has been posited as more therapeutic than active coping with the pain condition.

Those seeking help are not representative of those experiencing pain in the general population. Many will be capable of working out individual and highly effective ways to manage their pain and maintain the most satisfying lifestyle possible, while others will require considerable help and still manage only a minimally rewarding lifestyle. For each of these two ends of the spectrum the therapist will

Reflective exercise 23.2

One way of understanding the experience of a patient with chronic pain is to imagine yourself arriving for work, expecting not only a normal day, but also a normal future, only to be told by a stranger that you are never again allowed to work, ever, in any capacity for which you are trained.

Most people in this situation would initially dismiss this as untrue, unbelievable, and try to ignore it. However, when it became evident that not only were you not allowed to work, but also you were unable to dress easily, sit, stand or work in comfort, you could manage only basic household tasks with difficulty and discomfort, you could not concentrate to read, you could not maintain sufficient activity and interest to sustain friendships, and you had to move out of your house to different accommodation more suitable because of physical and financial reasons, then this would start to hurt.

Most people would vigorously and energetically try to identify the cause of such a catastrophe to reverse it, to return to their normal lifestyle, to fulfil the hopes, dreams and expectations they held for themselves, their family and friends.

When no cause or explanation can be identified, even after considerable effort, it is not unreasonable to consider such a situation as unreasonable, unfair and undeserved. Most people would be very distressed, angry, confused and apprehensive, and not confident about what to do next. This is a grief reaction to the multitude of losses involved.

If, during one’s life, there had been similar losses and/or hardships, the current events may trigger one to remember, and to re-experience, various aspects of those previous difficulties. The connection may be obscure because the association is usually highly variable; while the concepts involved are the same (loss, deprivation, injustice, powerlessness, etc.), one’s experience of it may be highly individual. For example, a divorce may mean devastation to one person and release to another. The recall of these past associations may be only partial. Perhaps it may be experienced only by similar emotions rather than a clear, readily identifiable picture of thoughts, ideas and images, such that the reasons for one being so upset may not be immediately apparent, either to the therapist or to oneself.

After many struggles, trials, disappointments and frustrations, the search for an answer may give way to acceptance that there is none. The ability of a person to negotiate this difficult course is very reliant on him or her having developed sufficient skills, knowledge, confidence and supports to cope with such problems earlier in life.

take a different approach. Those who are active in working out solutions will need less support but may profit most from technical advice and information. Clients who are less able to see solutions will require considerable support and encouragement, and possibly cognitive restructuring, as well as information, technical advice and ongoing support.

GOAL SETTING

One of the first responsibilities of the therapist is to assist the client with chronic pain to identify personally meaningful goals. Goal setting involves a collaborative process between the client and the therapist (Law et al 1995, Neistadt 1995). Clients are more likely to be satisfied with the service if they have been able to participate in decision making. For people who have lived with chronic pain for many years, and who have relinquished almost all of their goals, goal setting may take some time. The goal-setting process may include both formal and informal methods to set goals. A useful strategy can be to ask the client to tell you about their life before they had pain. An alternative, more formal method of setting goals involves the use of a questionnaire or scale, such as the Occupational Performance History Questionnaire (Kielhofner & Henry 1988) or the Neuropsychiatric Institute (NPI) Interest Checklist (Matsutsuyu 1969). These assessments assist therapists in identifying activities that are important to the client; moreover they can assist the client in remembering the things that were previously important to them. The Canadian Occupational Performance Measure (COPM) (Law et al 1991) is another useful tool for goal setting. The COPM utilizes a client-centred philosophy in assisting clients to identify their priorities for therapy (Law et al 1994, Lidstone 1996, Toomey et al 1995) and addresses the client’s functioning in the areas of self-care, productivity and leisure (Pollock 1993).

Key questions to consider when setting goals include: