Stress and Coping

Dear Ashley,
I know you feel like you have so much to deal with and to balance on a day-to-day basis, and you do. You not only have to manage the exhausting process of adolescence, you have to do it while constantly feeling poorly and worrying about if you will ever recover.  Just know that you have friends and family who are there for you, as am I.  Dealing with stress in a healthy way is a battle sometimes, but here are some suggestions based on research that I have done.  You know what works for you to manage stress, but it's something we are all constantly growing in.  Make it a priority to understand when and why you are stressed, because neglecting this may lead to panic levels of anxiety.  As always, let me know of any way I can be there for you. 
-Amanda

Risk for ineffective coping related to constant stress secondary to multiple diagnoses and everyday health challenges.

• Assess Ashley’s stress levels.  Sometimes stress is not expressed outright, but displayed through other emotional reactions or with changes in eating or sleeping patterns.  Her family and healthcare providers should become familiar with how she experiences and expresses stress (Carpenito-Moyet, 2010). 
• Assess sources of stress (Carpenito-Moyet, 2010).  Any changes in situation, health, or even in her personal life can be compounding sources of stress.  It is important to recognize that what may not seem significant to family or friends can be devastating for individuals.  
• Assess the coping and stress of her family.  Parents of adolescents with chronic illness can affect how their child handles stress by modeling effective or ineffective coping strategies.  Teaching effective coping to her family can also help relieve stress on Ashley (Compas, Jaser, Dunn, & Rodriguez, 2012). 
• Assess how Ashley views stress.  Some individuals focus on controlling the situation they are in (task-oriented coping), some focus on managing their feelings about their situation (emotion-oriented coping), and some like to avoid dealing with the experience altogether (avoidance-oriented coping) (Janowski, Kurpas, Kusz, Mroczek, & Jedynak, 2013).  Presenting coping strategies can be ineffective if she does not feel comfortable using them, but her ability to manage her emotions in challenging situations can be grown with teaching. 
• Assess for worsening symptoms when stress levels are high, as the body’s resources to fight illness is compromised when emotional stress is also involved (Janowski et al., 2013). 
• Educate about the importance of leisure and relaxation in managing stress.  Taking time for these enjoyable activities facilitates coping and helps to prevent stress from increasing to harmful levels (Nimrod, Kleiber, & Berdychevsky, 2012).  The positive emotions of joy generated from these experiences have a significant effect on symptoms. 
• Teach coping skills such positive thinking, assertive communication, and stress management.  These skills are important for coping with the stress of chronic illness as well as the stress of everyday life that can build up and overwhelm her (Compas et al., 2012).  It is important to not avoid the sources of stress or hope illness will resolve itself, but to focus on the positives of her situation (Peres & Lucchetti, 2010).
• Encourage regular exercise, to the extent her joint and mobility problems allow.  This is important in helping her live a healthy and fulfilled life, as well as helping with pain (Peres & Lucchetti, 2010).  Exercise is a widely recognized healthy coping strategy. 
• Refer to support groups for adolescents facing similar challenges.  Social support has been shown through research to reduce distress, depression, and anxiety during times of stress and significantly helps coping (Taylor & Stanton, 2007).  Perceiving that others are there for her and going through the same things may help Ashley avoid becoming overwhelmed. 
• Refer to a therapist for cognitive-behavioral therapy for symptoms of depression.  Adolescents experiencing chronic illness have a higher risk for depression, and cognitive-behavioral therapy can help strengthen coping and reduce this risk (Compas et al., 2012). 

Delayed Development

Dear Ashley,
Another thing you said scared you was feeling like time stopped when you got sick, while everyone else's lives kept going.  I understand you feeling like it is hard to keep up with this fast-paced world, and I want you to know that we all feel that.  I think the most important thing is making sure you feel connected to your friends because that is a huge part of how we grow to learn about ourselves.  I hope you can stay connected to friends who enjoy the same hobbies you do; horseback riding might be challenging now, but you have other things you're passionate about.  I think it is incredible you are taking classes online to finish high school, and you even talked about college in the future.  Let me know if I can help you on that journey in any way.
-Amanda

Risk for delayed physical and psychosocial development related to chronic illness. 

• Assess Ashley’s stage of development according to Erikson’s theory.  As a young teen, she should be experiencing the crisis of Identity vs. Role Confusion, when she will develop a strong sense of identity and plan for her future career (McLeod, 2013).  However, she has been so preoccupied with maintaining her health that she has not been able to reach optimal well-being, and appears to some extent to still be experiencing Industry vs. Inferiority (McLeod, 2013).  She has not had the opportunity to master skills in school or hobbies, and has not had this social outlet.  Understanding this and working from this baseline will help her grow into the next stages. 
• Assess anthropometric measures for delayed physical development.  This has been addressed in Altered Nutrition; moving forward her diet should support her optimal health.
• Meet her where she is in every way.  Activities that may be normal for other adolescents her age may be too strenuous or challenging for her, even activities she was comfortable with previously.  Considering this will help prevent the excess stress of being in situations that are too taxing (Schuler, 2012). 
• Mastering the stage of Industry vs. Inferiority typically involves achieving confidence in peer relationships, often in the school setting (McLeod, 2012).  As Ashley cannot maintain a normal high school schedule, she should become connected with a strong peer group centered around academics or hobbies that she enjoys to grow from these social relationships.  It is essential, though, that she can engage in hobbies and passions that will not exhaust her (Schuler, 2012). 
• Ensure support within her social circles to make sure she has someone who understands what she is going through and can support her in difficult situations (Schuler, 2012).  
• Another aspect of mastering Industry vs. Inferiority is building confidence in her intelligence in the school setting (McLeod, 2013).  She should be connected with tutoring resources so she move forward academically and does not feel inferior to her peers.  This will also be important as she progresses into Identity vs. Role Confusion, when she needs to choose a field to pursue as a future career (McLeod, 2013). 
• Refer to a support group for adolescents with similar chronic illnesses that have some of the same daily struggles, another peer group she may benefit from (Carpenito-Moyet, 2010).

Caregiving Stress

Dear Matt, Jane, and Ryan,
Most of what I have written has been addressed to Ashley because I want her to feel like she is the center of her care.  In the past she's expressed feeling like a lab rat, or like doctors didn't listen to what she feeling, so I want her to read all of this care plan before any care is forced upon her.
However, without you guys, none of this would be possible.  You are her acting care providers on a day-to-day basis, and since I cannot be there, I hope you can use some of these suggestions to help her feel better.  Some days, though, I know you must feel like so much is being asked of you.  You are responsible for your own lives and your own well-being, but you have also been given the responsibility of the well-being of your daughter and sister.  This must feel so overwhelming and unfair sometimes, and I want you to know that that is a completely normal and okay feeling.  Don't forget to care for yourselves too.  You are under a lot of stress and coping with this is essential for your own happiness and mental health.  I encourage you to use these ideas to assist each other and to reach out to a counselor to help.  Let me know if I can do more research or help in any other way.
-Amanda

Risk for Caregiver Role Strain related to long-term duration of care required.

• Assess levels of perceived stress (Carpenito-Moyet, 2010). 
• Assess for healthy or unhealthy coping strategies currently used to ensure they help caregivers in dealing with the strain they are under (Dean & Wilcock, 2012).
• Provide sufficient education about the disease process identified, symptoms expected and reasons for these, answering questions and addressing any concerns they have (Dean & Wilcock, 2012).
• Strengthen existing coping strategies and teach new ones (Carpenito-Moyet, 2010).
• Educate about the need for self-care while caregiving, as burnout is possible in a chronically high-stress situation (Merluzzi, Philip, Vachon, & Heitzmann, 2011).  This includes maintaining health and seeking support when necessary (Merluzzi et al., 2011). 
• Refer to counseling services which can provide an outlet and help the family reframe stressful situations.  Risk for untreated dysthymia is significant among caregivers (Vitaliano & Katon, 2006).
• Refer to support groups for families of adolescents with chronic illness because they can sharee mutual experiences (Carpenito-Moyet, 2010).

Short-term Confusion

Dear Ashley,
I remember you describing intense periods of brain fog since first getting sick in 2006.  You said it fluctuated, and I was glad you were able to spend the vacation feeling somewhat clear.  Having all those periods of time you don't remember, and not feeling able to concentrate must be frightening and frustrating.  I wish I could tell you how to fix it, but it's one of those symptoms that could be caused by a wide variety of things.  It is important though, that when you are feeling like this, your family and friends understand and make sure to not overwhelm you.  These are mostly suggestions for them to be sensitive to what you are experiencing and to understand that it is not your fault and you are doing the best you can.  I hope they help.
-Amanda

Risk for Acute confusion, related to disturbance in cerebral metabolism secondary to side effects of antibacterial medications.

• Assess daily symptoms of brain fog, asking Ashley how she is feeling as her experiences vary every day (Schuler, 2012).  Keep daily routines consistent which can help maintain orientation (Carpenito-Moyet, 2010).

• It may be necessary to find a scale to assess altered cognition, maybe testing orientation and memory would help (Carpenito-Moyet, 2010).

• Assess for depression, as there is an association between depression and confusion (Carpenito-Moyet, 2010). 

• Provide flexibility with homework assignments and other educational obligations, because somedays she may need more time to complete the level of work she is capable of (Schuler, 2012).

• Provide education to her family and community about what symptoms may appear, why, and how to interact sensitively with her during these times (Dean & Wilcock, 2012; Carpenito-Moyet, 2010). 

• Refer to a neurologist regularly, perhaps every few months, and more frequently when Ashley experiences exacerbations of her symptoms.

• Refer to education counselor who understands her situation and can recommend how to proceed academically and help her as she pursues completion of high school with online courses (Schuler, 2012).  

Imbalanced Nutrition

Dear Ashley,
Remember that night when I was a little intimidated to ask you about why the chef at the restaurant had to make you separate food at dinner?  I did not know it would lead to hearing your whole story, and I could not have known how it would change my perspective on priorities in healthcare. 
Knowing that you can't enjoy the same foods as everyone else must make you feel left out sometimes.  I was really impressed by how faithfully you maintain your diet.  I hope you have been able to maintain your weight since I last saw you, because I remember you said that it's hard for you to gain weight.  Fortunately, you found a nutritionist who can help with that.  Here are the suggestions I have based on what I learned through researching.
-Amanda

Imbalanced nutrition, less than body requirements, related to dietary restrictions, as evidenced by intolerance of gluten and dairy and low body weight. 

• Weigh herself regularly to see if intake is sufficient to maintain weight (Carpenito-Moyet, 2010).
• Assess for other injuries or sources of stress that may require increased intake.  It is important to keep her body strong in every way possible.
• Supplement her diet if she is losing weight.  Sometimes it is necessary to encourage her to eat a lot of the foods that she is not sensitive to and enjoys.
• Provide a diet high in nutrient-rich foods, as adolescents are at especially high risk for dietary imbalances due to strong food preferences (Thompson, Dennis, Higgins, Lee, & Sharrett, 2005).
• Provide emotional support, as a maintaining a consistently restricted diet can be discouraging and challenging for individuals of all ages.  Try to avoid an attitude of what she is “allowed” and “not allowed” to eat, as this teaches an unhealthy perspective on food (Mariani et al., 1998). 
• Assess serum electrolyte, lipid, protein, and blood cell levels to detect possible imbalances due to diet or malabsorption (Aurangzeb, Leach, Lemberg, & Day, 2010).  Take supplemental vitamins as necessary.
• Assess for new or changing intolerances.  For younger individuals, changes in food sensitivities are common and should be brought to the attention of a nutritionist immediately.  Regularly seeing a nutritionist who is familiar with her gluten and lactose intolerances can ensure her diet remains balanced.

Chronic Pain

Dear Ashley,
I know that pain is probably your most persistent and limiting symptom, and I'm sorry that with all advances in medical technology, nothing can fix it.  It must be so frustrating to have doctors perform all these complex and intricate tests and they can't even solve the most basic problem of being in pain.  I know you have tried so many pain management strategies since this all began, and it's possible none of these ideas will work for you.  If that's the case, I would be happy to keep sifting through the research to find other strategies that have worked for patients in the past.  
I just want to say that your ability to keep smiling even when everything hurts is inspirational to me, so thank you.
-Amanda

Chronic pain related to joint inflammation secondary to an unknown pathophysiologic process as evidenced by reports of pain lasting longer than 6 months. 

• Assess pain with a scale specific to her, so she can compare her pain day by day and month by month in the way she is experiencing it.  A standard scale used for acute pain patients in a hospital setting is likely not specific enough to address her challenges (Fortney, 2012). 
• Assess for complications of chronic pain.  Depression symptoms are common, secondary to unresolved chronic pain (Carpenito-Moyet, 2010). 
• Assess coping strategies to manage pain, and help build upon these and encourage growth in the areas that are  lacking (Peres & Lucchetti, 2010).  Different individuals cope in different ways, and providers should facilitate the search for enhanced coping (Peres & Lucchetti, 2010).
• Limit use of opioids.  These may lead to dependence, worsening pain problems, and may not be effective against chronic pain (Fortney, 2012).  Consider them only for short-term use, for break-through pain that cannot be managed any other way (Fortney, 2012).  
• Encourage low impact exercise, which can improve stiffness and increase endorphin levels (Selby, 2011).
• Provide emotional support.  Sometimes this is the last available option when pharmacologic and non-pharmacologic strategies are insufficient.  Because I am not Ashley’s health care provider in person, this is one way I can be there for her (Carpenito-Moyet, 2010). 
• Teach relaxation techniques as she finds them effective.  She mentioned that after seeing a pain specialist, she found this helpful on some occasions, but not consistently (Selby, 2011). 
• Refer to a pain clinic. Ashley found the emotional support to be helpful, but many of the non-pharmacologic pain relief strategies to be insufficient. 

Joint Stiffness

Dear Ashley,
One of the first things you mentioned to me was feeling like you couldn't keep up physically on the trip because you were so worn out and your joints hurt so much.  That must have made the trip so strenuous.  I hope your family remembered to slow down when you felt fatigued, because I know your discomfort fluctuates sometimes.  Here are some suggestions for improving joint stiffness that I found.  Let me know if you want me to keep looking for more!

-Amanda


Limited physical mobility related to joint stiffness secondary to inflammation and decreased strength and endurance as evidenced by client’s complaints of discomfort.

• Assess for acute increases in pain levels that may be impairing her mobility (Carpenito-Moyet, 2010).  Sometimes more pain medications may be necessary to address acute exacerbations of pain in order to promote mobility (Swann, 2010). 
• Assess her specific mobility challenges and do not force exercises that are too uncomfortable (Carpenito-Moyet, 2010).
• Encourage low-impact, gentle exercise, as it can gradually increase endurance and promote general health (Gowdie & Tse, 2012). 
• Encourage regular stretching exercises; patients experiencing limited physical mobility found this relieved joint stiffness (Bazzichi et al., 2010). 
• Encourage use of massage to relieve pain and stiffness.  Many patients have found this to be effective against discomfort in promoting mobility (Bazzichi et al., 2010). 
• Her primary care provider has prescribed nutraceuticals to help with inflammation, an assertion which is somewhat supported by the evidence and may be an effective strategy (Aruoma, 2010).  As a provider of nursing care, I would support her using these as prescribed by her provider and as recommended by the research.
• Refer to physical therapist for interventions targeted specifically to her current mobility and her personal challenges.  Individualized mobility plans have a much greater potential for improving mobility and feeling of well-being than do standardized plans of care (Fregly, Boninger, & Reinkensmeyer, 2012).  A specialist in this area would greatly benefit her.