Psychology and Perthes

Psychology and Perthes


Mind, Body, Healing

Most accept that disease is stressful, especially chronic disease. But stress can take a toll on the healing process. According to a meta analysis of 30 years of research, stress suppresses the immune system and chronic stress suppresses both humoral and cellular immunity (Segerstrom and Miller, 2004). Furthermore, there is a well documented link between a state of tension and a hyperactive reflex arc in skeletal muscle established by Dr. Edmund Jacobson in the late 1920s. For a child with Perthes, this can mean an increased risk of infection and treatment complications. Increased stress may also impact pain during Perthes as well as contracture due to increase, sustained muscle tonus. Why mention this? To illustrate that you can’t isolate Perthes disease from the child affected by Perthes or the family impacted by Perthes. The best approach to health is patient centered care, caring for the whole patient – mind and body.

Stress

Stress is inevitable. Perthes disease brings its own stressors and these will likely change during the course of the disease. Certainly your child will feel physically stressed and may also experience anxiety over a change in routine, fear of treatment and disease progression, or even guilt (however misplaced) for being diagnosed. This can change from day to day. It should be pointed out that children often display stress differently than adults and aren’t likely to walk up and tell you that they are anxious because they aren’t able to play football; children may need help labeling their emotions It’s also important to acknowledge that everyone in the family is dealing with Perthes. There may be guilt, jealousy, or frustration from a sibling due to the change in family routine. Parents often express extreme worry, fear of prognosis as well as financial burden, sadness, and guilt. Understanding the psychological impact of Perthes can help your whole family during the process.

Our response to stress is mitigated by both intrinsic and extrinsic factors. We can’t change how we are genetically inclined to respond to stress. We can address coping mechanisms and include healthy habits such as staying active, even if those activities change during Perthes, as well as maintaining a support and social circle.

Grief, Loss, and Perthes

A feeling that commonly emerges when discussing Perthes, is grief. Grief is about loss, not only death. In the case of Perthes your family is grieving the loss of their sense of normalcy. Acclimating to a “new normal” can be traumatic. Some significant sources of grief are death, medical diagnosis and lifestyle alterations, divorce or dissolution of a relationship, social status changes, family crises/trauma, relocation. In processing loss there are several phases we go through. However, we don’t progress through these phases in order, nor is there a timeline for how long each phase lasts. It’s also common to experience these phases out of order, or to think the issue is reconciled, only to return to a state of loss.

  • Loss Any absence of, deprivation of, removal of person/place/thing that is a part of one’s routine.
  • Grief – What we feel or experience as a result of losing someone or something of value. (Reactive Process)
  • Mourning – What we DO with what we feel or experience. The process of externalizing through activity. (Proactive Process)
  • Resolution – Sharpening the focus on the issue at hand.
  • Reconciliation/Integration – The process of coming to terms with the difference between what we thought we had and what we DO have and carrying the balance forward.

When a child experiences loss developmental tasks may be complicated. A child may find it more difficult to separate from family or may find difficulty with social development, self-esteem, and social/play experiences. A child may also experience a delay in developmental milestones. Dealing with Grief requires acknowledging that our experience is one of Grief and loss. Don’t be afraid to talk about it in that context. Reflect emotions surrounding the diagnosis of Perthes and subsequent lifestyle changes. The stages of grief are different for everyone and they are not linear.  You or your child can move in and out of the different stages in many ways and revisit stages, even after you feel like you’ve come to acceptance. You and your child may experience:

  • Denial: numbness or inability to feel or cope.
  • Anger: intense emotional reactions to EVERYTHING, may seem illogical or out of context.
  • Bargaining: “It’s not fair”  “Why me?” What did I/we do to CAUSE this?
  • Sadness:  Can look like depression and may include loss of appetite, trouble sleeping, excessive fears, separation anxiety.
  • Acceptance: It is what it is.  And from here we learn to make accommodations, get creative and find the best support.

Tools to Move Through Stress, Loss, and Grief

The ability to express yourself through art, play, and talk are essential. Daily practice of Mindfulness can help teach children how to quiet a worried or anxious mind. Empathy is a powerful tool to support your child through the Perthes process and help him or her gain a greater emotional intelligence. Empathy is the psychological identification with the feelings, thoughts, or attitudes of another. This differs from sympathy because sympathy essentially feels sorry for someone. Pity does not build strength. Empathy is particularly important for children diagnosed with Perthes because it validates them and their process. It is common for a child with Perthes to feel constantly invalidated or misunderstood due to the disease itself; Perthes is an invisible disease. Children diagnosed with Perthes don’t “look sick,” adaptive equipment may be used predominantly at home or for demanding outings. Unfortunately, this can put a child with Perthes in the position of having to defend his or her medical needs to others. Fortunately, it’s not hard to show empathy. This can be accomplished through a process called reflection, where you essentially mirror a person’s feelings, thus validating them. Reflection of Feeling:

  • Conveys understanding
  • Gains insight into child’s emotional responses
  • Validates child’s emotional experience
  • Teaches a child an emotional vocabulary
  • Focuses on the need expressed, not the behavior
  • Decreases the need for escalation
  • Increases connection
  • Reduces anxiety in parent and child

 

When reflecting emotions in a child, you will likely need to help them name the emotion. For example, a young child may be stomping in the kitchen, slamming cabinets. When asked a general question such as “what’s wrong,” the child is likely to respond with something to the effect of “there’s nothing to eat; I hate all of the food here; it’s gross.” That’s probably not the answer that the parent wanted. In order to help the child build emotional intelligence and begin to name his own emotions, help him label them. That parent could try something like, “you’re stomping and slamming; you seem frustrated. Are you frustrated that there are no cookies?”


Mindfulness

Mindfulness is simply noticing the moment with all of your senses. It’s being fully engaged in the present. It’s watching, observing and considering your thoughts/mental processes without judgement. Mindfulness allows people to examine  long standing patterns of thinking that have become habits and it encourages development of new neural pathways. Mindfulness can help reduce rumination on the past or constantly rehearsing the future. It’s best to practice mindfulness daily and it can be formal or informal practice where you simply integrate bits of mindfulness into your daily life, particularly when you are feeling stressed or anxious. At first it can seem awkward or difficult but soon it will be second nature! Mindfulness is particularly helpful in a chronic disease state like Perthes since each day is a bit different. Certainly there are plenty of emotional ups and downs and mindfulness can help your child to relax and remain present. Mindfulness can also help your child focus on subtle changes in his or her physical state such as increase or decrease of pain or an activity becoming more or less difficult. There will be good days and bad days both physically and emotionally. One informal and easy to begin mindfulness is to focus on the breath and consider how your body feels as you inhale and exhale. Imagining a square is helpful to illustrate the continual pattern of breath.


Resilience

Resilience is all about being able to overcome the unexpected. The goal of resilience is to thrive. When we tackle obstacles, we find hidden reserves of courage and resilience we did not know we had. And it is only when we are faced with loss or failure do we realize that these resources were always there within us. Resilience can’t be bought or taught – it must be developed! There is a common misconception that people who are resilient experience no negative emotions or thoughts and display optimism in all situations. The reality is that resiliency is demonstrated within individuals who can effectively manage setbacks by using their internal resources and coping mechanisms. In other words, people who demonstrate resilience are people who balance both positive and negative emotionality; they possess a full range of emotions. Resilience in Perthes:

Use empathy, not pity, to connect with your child.  The #1 key to resilience is a strong bond with a role model – your relationship is so powerful!

Use reflection with their feelings and help them feel understood. This will help them develop emotional regulation and fight anxiety, fear and sadness.

Acknowledge, deal with and process grief so you can move to the Acceptance phase even if other phases are still present. Through Acceptance, you can access your problem solving skills to advocate for sustainable resilience and create opportunities for your child to enjoy childhood!


Adapted from Kennedy, Lori. Perthes Parent Conference, Texas Scottish Rite Hospital for Children, 2017.
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