Table 2: Clinical nursing competency of care for Hansen’s disease survivors in the final career stage of nurses’ development in Japan.
Categories
Subcategories Lower categories
1. Ability to reduce multiple severe sequelae that are characteristics of Hansen’s disease and deuteropathy
a) planning care considering individuality due to Hansen’s disease sequelae. We must construct a care plan, assuming sensory and motor nerve paralysis, and visual and hearing disorders.
Hansen’s disease involves multiple and severe disorders. The combination of sequelae differs for every survivor. We must consider survivors’ individuality.
b) improving ophthalmological treatment skills, because survivors think that sight is most important after survival. Survivors think that survival is most important, and sight is second most important.
There are many nervous survivors, because in the past, many patients lost their eyesight. They could not close their eyes because of lagophathalmos, so their eyes were dry and the cornea continued to be damaged.
We need skills for eye treatment because of mucus due to lagophathalmos and ingrown eyelashes, for example, wiping without touching the eyeball, cutting the eyelashes, and treatment of artificial eyes.
I obtained a license for ophthalmology.
c) preventing external wounds and burn wounds, because survivors cannot feel pain due to perceptual dysfunction. Survivors neglect to notice if they have severe burn wounds or break bones, because they have feelings of anesthetization. So, we must conduct careful observation.
We must especially pay attention in order to prevent burn wounds, for example, while cooking on the stove, using an electric kettle, and soaking in the bathtub.
d) learning how to bandage and dress the tip of the hand or foot, and protect it from becoming injured, while also protecting against peripheral circulatory failure. Bandaging must be done to prevent circulatory disturbance and prevent the bandage from coming loose. We must know how to bandage so that it is not too tight and not too loose.
When we wrap the extremities of the body, we must prevent difficulty with activities of daily life, because if our bandaging is bad, survivors have difficulty with their sense of touch.
e) eliciting how to deduce load in the same place, depending on survivors’ activities of daily life. Survivors cannot hold a cup with their whole hands, and so hold it with the tip of their hand, due to contracture and deformation of the hands.
If we conduct observations carefully, we can understand why wounds occur, and can understand how and where to wrap.
When wounds heal, new wounds soon occur. The role of the nurse is to think about how to prevent wounds from occurring.
Survivors cannot live without using their hands and feet. We must think about how to heal wounds so that they can use their hands and feet.
Decreasing numbers of wounds are evidence that survivors cannot move by themselves due to aging.
f) becoming the substitute for survivors’ lost eyes, hands, and legs, and supporting their daily life safely and comfortably. The role of the nurse is a substitute for the survivors’ eyes, feet, and hands.
We must create an environment carefully in order to keep survivors' comfortable and safe in daily life, when they have lost their eyesight, experienced dismemberment, anesthesia, etc.
Survivors cannot breathe if nasal irrigation is not done for three days. They cannot do nasal irrigation by themselves, so we cannot have a holiday for three days even during the New Year holiday.
2. Ability to see through infection and focus on what is hidden
g) there are particular infection symptoms of Hansen’s disease. If a virus enters the body a red line emerges. The red line is a particular symptom of Hansen's disease, in which the skin becomes red from periphery to center.
In the past day, a patient had a leprosy reaction, in which a high fever emerged and the patient's face collapsed. When I saw the collapsing face, I felt fear.
The patient's eye, which was beautiful until yesterday, became congested and collapsed and mucus flowed out of the eyeball. Symptoms of Hansen's disease were very severe.
We understood that empirically there are two types of fever; one that is very high from 40 degrees Celsius and up, and another that is a low fever from 37 to 38 degrees.
Hansen’s disease includes Type L and Type B, and symptoms of Type L are severe. Nurses educated at the assistant nursing school established by the sanatorium are familiar with these types, so just by seeing the sequelae, we can distinguish between the L type and B type.
h) having superior judgment for seeing through abnormality of injury. If a survivor has a fever, we suspect infection from wounds. If we search the whole body carefully, we can see the focus of the infection.
If a wound looks very small like the tip of a needle, the infection is focused under the skin, so it starts to disintegrate. When the surface of the skin is red, it is too late.
i) knowledge of treatments to protect against advancement in severity from small wounds to amputation. Even doctors think that wounds can be cured with just skin care. However, after several days, the wounds become severe and disintegrate. Doctors repeated failure to recognize wounds and conduct debridement early mean that healing cannot occur. Hansen's wounds are difficult for general medical staff.
Small wounds lead to bone infection and bone necrosis, and amputation. We must control infection when the wound is very small like the tip of a needle.
3. Ability to acquire survivors’ reliance through the development of skills suited to survivors’ selection criteriacriteria for acceptance
j) relationships of mutual trust with survivors are most important because survivors are not replaced. Survivors and I understand each other, because I have spent two or three decades with them.
If we cannot have a relationship of mutual trust with survivors, we cannot do anything, because survivors at the sanatorium do not change.
k) if we can acquire skills to meet the needs of survivors, we can create relationships of mutual trust with survivors. When I could perform treatment in ophthalmology, surgery, otolaryngology, and dermatology, survivors approved of me as a good nurse.
Survivors trust nurses who can find small wounds early and have good bandage skills.
Survivors trust nurses who have good skills in terms of eye treatment.
Survivors ignore nurses who have poor treatment skills.
l) if we confront survivors and pay careful attention to the selective criterion made by survivors, we can create relationships of mutual trust. Survivors accept nurses who perform careful observation.
Survivors ignore nurses who cannot move without suggestion.
When nurses listen to survivors and respect them, survivors start to rely on nurses.
m) I studied about the history of Hansen’s disease, in order to understand survivors’ experience. I thought I had to understand survivors’ life history in order to be accepted by them, and I read books about patients’ experiences and Hansen’s disease history, etc.
n) sustaining a friendly and kind attitude, when facing anger and refusal from survivors who cannot accept new nurses. Survivors who have lived at the sanatorium for half a century, do not accept the new wave of nurses.
We need to endure survivors’ refusals and anger, and express attitudes for acceptance.
I worked sincerely and a survivor’s attitude became kind. For example, he knew of my poor skills but he forgave me and let me take charge of his treatment.
4. Ability to care for survivors during death and dying in place of their family whom they had lost due to past compulsory isolation
o) becoming a good listener for survivors who had been socially isolated, and becoming a psychological anchor in place of their family. Survivors hope that we will be around and hear their story, because they are lonely.
Survivors hope for deep relationships with nurses like family, because they have lost their family due to forced isolation.
If they did not have Hansen’s disease, now they might have children and grandchildren. They do not have psychological satisfaction from their lives.
Nurses must make time to hear survivorsr’ stories with empathy.
I am engaging in communication with survivors, in order to open their closed minds.
They appreciate touch.
p) supporting survivors to strive toward thinking that “my life has been worthwhile”. We support them so that they can live with hope and have a reason for living.
We hope that survivors can think “my life has been worth it.”
q) shouldering the roles of caring for survivors during dying and death is the responsibility of only our nurses in the sanatorium. We must care for dying and death in place of family.
We must care for the dying, because the sanatorium is their last home.
I want to care for them at the end of their life, because I was in their life for a long time.
5. Ability of passing down survivors’ sufferings to future generations in place of survivors
r) understanding survivors’ despair and wish for suicide, due to abandonment from general society and not living the life they hoped. Survivors cannot forget the past, in that they could not have children, developed severe wounds due to forced work, and had to develop self‐sufficiency in poverty.
Survivors felt a sense of hopelessness and hoped to commit suicide due to forced isolation.
We must understand that they are upset about not being able to live in society due to discrimination.
They will continue to need our psychological care.
We must learn their history, in order to understand survivors’ suffering.
s) older nurses who know the sanatorium’s history have the mission of handing down the history of Hansen’s disease instead of aging survivors. Survivors worry about fading out and that their experience will be forgotten with their death.
Older nurses have a mission to pass down information to the next generation, because we know survivors’ experiences and history.