Ann: Thank you. Welcome everyone. I think sometimes we avoid including coping in our goals because people will say it is not reimbursable or measurable, but coping is part of the total picture.
Theories and Evidence-Based Practice
OT Practice Framework: Domain & Process, 3rd Edition
There are client factors in the OT practice framework, in the 3rd edition. These are values, beliefs, and spirituality; and coping relates directly to these concepts. We all have different cultural influences from our lives and so our values may vary. Our beliefs definitely vary according to what we personally believe, and we know that there is a great variance from person to person and community to community. Spirituality is the importance of living in the moment or whether or not you see yourself as being on a continuum of life that includes your ancestors and your offspring. At any rate, coping is something that we can all understand.
Literature About Coping
Often the literature is based on disease- or condition-based criteria. Throughout this talk, I have referenced some of the literature that deals with living with chronic illnesses. Some of the literature is focused on the individual, while others are focused on the caregiver rather than the person experiencing distress. An example of this is when speaking about children. Many times they cannot articulate what is making them sad, influencing their ability to have some degree of resilience, or hope from a spiritual perspective. Coping for children is often focused on the parents or siblings, not on the individual, per se.
Coping
Coping is linked to measures of well-being, which is central to the concept of occupational therapy. If you think back to Charles Christiansen's Eleanor Clarke Slagle lecture, the focus of what he was saying is that occupational therapists tend to focus on the concept of well-being. We help people overcome sadness, and sadness is the most strongly linked concept that effects the ability to cope. Finding ways of dealing with sadness (in some of the public health studies coming out of Harvard) have indicated that if you can look at life, even as a pessimist, as the glass having the potential of being half full, then you have the ability to recapture hope. This has a positive effect on your immune system and your health overall. When people are in crisis, the goal for coping shifts from the traditional approaches of problem solving, self reliance, and understanding, to a focus on stabilization.
Some of our colleagues have published about natural or man-made disasters. For instance there is a book about the role that occupational therapists played after 9/11. We can also think about also disaster preparedness. There is a lot in our literature that speaks to the ability to help people with crises and debriefing. Debriefing falls into this category of coping as well.
Brandthill et al. study. This is an article that focused on Catholic nuns with physical impairments. It looked at the coping strategies that elicited psychological well-being and happiness amongst them. The authors found that the use of strategies for coping that are congruent with one's own core values and beliefs can be most effective. Even nuns with physical impairment expressed willingness to help others as altruism is a value in their close knit community. Even with a physical impairment, they can still be present for others, listen and console, and have gifts to offer to help others.
Butner study. Here is another study by Butner that looked at caregiving stress, coping strategies, and health outcomes. This shows results for the REACH II study, which was published in 2015. Caregivers of persons with dementia experienced stress and burden due to the caregiving role, which can negatively effect their physical and psychological health. Caregivers utilize various coping strategies including relying on social support and using religious and/or spiritual practice to deal with the daily stress and burden of providing care. The main goal of study was to examine two specific means of coping, namely social support and religious and spiritual coping, and the relationship of these coping mechanisms to physical health outcomes. A total of 435 people were studied, between the ages of 61 and 84. The caregivers, who relied on social support networks, had better physical health themselves. Understanding coping mechanisms that caregivers use may inform the development of interventions to improve physical and psychological outcomes for caregivers were discussed.
This was my own particular experience with caregiving. Both of my parents had dementia, my father had Lewy Body disease and my mother had dementia associated with diabetes and microvascular disease. I had a good circle of friends who were always very supportive and who came to my aid almost mysteriously when I needed them. I am very grateful for the social support because I returned to a community where I grew up and had not lived in for 30 years. It was amazing to me that people were there to help and to help me keep my own spirits up. You discover ways of thinking or feeling about what you are going through at the time. My parents were not the stalwarts as they once were. My mother, for the last year she was living, thought she was eight years old, and often she thought I was her grandmother. You need to put things into context and put one foot in front of the other, but also try to be resilient and avoid sadness.
Doka study. Doka, in counseling clients in the chronic phase of illness, speaks about long term diseases such as surviving cancer. In the early phases of accommodation and mitigation, the individual strives to find ways to live life with the ongoing presence of the disease. Chronic phases are existence and extension. The chronic phase may deeply effect the nature and symptoms of the disease. In diseases with slow continuous patterns of decline, the family and individual have to cope with the psychological distress of constant and continued deterioration. One of the clients quoted that every night he woke up weaker. Relapses and remissions versus periods of stability may be followed by sharp declines in function. If you think of cancer in the final stages, many people now live for longer periods, even with Stage 4 cancer, but sometimes they experience fatigue and changes in cognitive function. You may see these types of behaviors in your clients if you work with that particular population.
Pain Control
Pain control is critical in the chronic phase. In the news media, we hear quite a lot about opioids and opioid addictions. We need to look at different alternatives to taking pain medications. Occupational therapists can play a critical role in this because people are looking for whatever will help them. We do not prescribe pain medicines, which is a good thing. Some of us may work in pain clinics where people do receive prescriptions. The philosophy about pain control is shifting away from pharmacology because of opioid addiction, the cost to communities and populations overall, as well as the impact on the individual and their family. The previous concept was that you needed to have enough pain medicine so that you were able to eliminate the sensation of pain. You did not want the person to have to deal with the chronicity or the increase over time of the durability and the persistence of the pain. Dealing with a therapeutic window, the aim was to narrow the perception of pain with the use of drugs. More of us have begun to get competencies in the use complimentary and alternative medicine techniques. For instance, we can use guided imagery, Reiki, or yoga directly in our treatment sessions. Others of us see the importance of helping people to identify their own interests in an area of complimentary alternative medicine and help them to incorporate this new occupation into their lifestyle. Sometimes people will choose their own method, whether it be tai chi, chi gong, meditation, or guided imagery. We can coach them through the process.
There are ways to measure how people are doing in terms of adapting to disability.
- Quality of Life Scale (QOLS)
- Psychological Adjustment to Illness Scale (PAIS)
- Million Behavioral Health Inventory (MBHI)
- Reactions to Impairment and Disability Inventory (RIDI)
- Handicap Problems Inventory (HIP)
In the handout, you will find a great number of references. I believe that you will find that many of these tests are in the Finlayson text and Pakenham's coping chapter in the MS book. That is the most comprehensive listing. The article by Doka also has many of these scales listed. The coping by Pakenham is a chapter in a book and I was able to retrieve it as an e-book from the library.
Social Support
Social support is extremely important. Situational barriers and crises can be social barriers. There can be a lack of flexibility regarding when the person eats or what they eat for example. Many people in our society find that their families or their different cultural groups have used food or eating as a reward. However, eating may be something that gives them joy, such as people that describe themselves as foodies.
Chaotic lifestyles characterized by constant crises may make it difficult to balance the demands of simultaneous regimens. A therapeutic alliance amongst caregivers or the treatment team with the individual may be necessary. A friend of mine, I knew when I was studying for my masters at NYU, had polio. After being in an institution for a number of years, he was retrained in computers and began working at a university. He had a number of people who were his caregivers and had a very elaborate schedule. They would come into his office at specific times to help him do things like empty a leg bag or reposition him, as he could not physically move his trunk adequately to relieve pressure. It was a chaotic lifestyle, but it worked for him.
Intervention usually works best when the individual actively seeks input. An alliance involves respecting people's choices. Some people are very reclusive especially in my age category. People, in their 50s, 60s, and early 70s are living alone in the community. There is going to be a crisis as people age and are not able to sustain themselves and need more assistance at home. The number of beds in facilities will not be adequate to handle the load of all of the people in my age group who want to remain in the community. They need to develop a contingency plan on how to respond in a medical crisis. They may require periodic reassurance calls. For example, someone on a care team needs to be linked to them and checks in on how they are doing periodically.
Finding Meaning
Frankl, in 2004, wrote that while we may have no other choice about suffering, one has choices within suffering. We can help people through feelings that intensify, such as the fear of increasing disability, dependency, and dying. We can challenge assumptions, rationalizations, and other defenses. Prayer, meditation, or changing behaviors may help. I have a friend, who is 92 years old, who lives alone in the community. She carries her own laundry up/down two flights of stairs. She has gone through periods of time where she has required an assistive device to ambulate, but she has overcome that with therapy to regain her strength and decrease pain. She prides herself in her physical ability to continue to function. I have asked her, "Have you thought about dropping off your laundry and letting someone else wash it and pick it up? Your adult children then will not worry about you, and you will have the extra time in your day that you would not have otherwise." So she is considering that.
Crises can overwhelm defenses and result in strong affect and anxieties. If you work in medical communities, you know that depression and anxiety are sometimes a side effect of being treated for chronic and sometimes acute illnesses. For instance, in the cancer community, mood and anxiety disorders (depression and anxiety) are fairly prevalent. Trying to help people to function in a crisis can overcome that. They may need medication and not just guidance through. They may need to speak to a psychologist for a period of time. They need to be in an environment where they feel safe, and they can air what their anxieties are. Sometimes if you can grab the dragon by the tail and put it on the table in front of you, you can confront the problem and make it much less than it seems.
Discussing individual meaning to the functional challenge is also important. Emotions can bounce. Sometimes people may feel positive and upbeat, and at other times they may feel depressed, angry or lonely. I have known people that were in the prime of life, working full time, and managing their families, but the most important time to them was eating dinner around the table with their kids. When the individual had a stroke and was unable to eat and swallow, they stopped sharing meals. It was important to figure out how they were going to cope with that as a change. If the dinner table was the place where they interacted with their teens and were able to keep a pulse on what was happening in the family, this was an important occupation. Working through those kinds of changes and shifts in lifestyle and roles are very important. Who does that other than occupational therapists?
Venting emotions may allow clients a sense of resolution and comfort. You may or may not feel comfortable with this. Sometimes people deal with this by using anger. If you think back to Kubler Ross and how people adjust, then anger is definitely one of the phases that everyone moves through. We know that all of those Kubler Ross phases that were described are fluid. If you can help people through their moments of anger and redirect them, then they may overcome sadness and be able to better cope.
Lamph study. Lamph talked about raising awareness of borderline personality disorder and self injury. I have not specifically, until this time, talked about what happens when you are dealing with mental health conditions. In most mental health conditions, stigma is a common problem. People do not like to say, "I have a mental illness," or "My family member has a mental illness" because it carries such stigma. You almost become pariahs, and people will avoid you unless they have experiences themselves with mental health or they are someone who is very altruistic. Caregivers often do not give the same level of care to people who have a diagnosis of borderline personality disorder because they have been classified as being untreatable. People with borderline personality disorder may have splitting behaviors where they split team members against each other. Case management can become very difficult and over time people will avoid individuals with these problems. The problem is there really needs to be a team approach to care because the person still needs to be listened to and their emotions need to be validated. Caregivers need to display hope and optimism. I think we have a conflict sometimes as caregivers. We want to offer hope and optimism, but we think we need to limit set.
