4.2.1 The burden of relocation after the age-related decline of our community’s powers of mutual aid and mobility

This category contained five subcategories: 1. Our power of mutual aid is decreasing because we are all getting old (by the death of other survivors and our spouses, and the decreasing function of the survivors' self-government association and of individuals’ physical functioning). 2. Increasing fear of dementia and early death due to environmental changes and overwork due to moving house. 3. Indeterminate anxiety due to inability to imagine life after moving house. 4. Bitter memories of past relocation events. 5. The burden of packing and carrying household goods in a deteriorating living environment.

4.2.2 The burden of creating new strategies to live with multiple and severe sequelae in a new environment

This category contained the following subcategories: 6. Participants who had lost their eyesight expressed misgivings regarding being watched while eating, because they felt their manner of eating was disgraceful. 7. Participants who had lost their eyesight felt the burden of losing their mental map of their living environment and having to create a new mental map of their new surroundings. 8. Suffering the loss of a good residential environment that had accommodated the participants’ sequelae, neuralgia, thermal regulation disorder, and poor vision. 9. Fear of increasing injuries (which were more likely to be severe due to the characteristics of Hansen’s disease)due to the loss of a living environment in which we had contrived to prevent injuries and offset sensory disorders affecting participants’ hands and legs. 10. The loneliness of a comfortable residential and personal environment as one’s final abode. 11. The increasing burden of caring for an aging blind spouse.

4.2.3 Dislike of having one’s daily life disturbed

This category contained the following subcategories: 12. Misgivings about being disturbed from a familiar daily rhythm built up over a long time. 13. Worries about being disturbed in daily life due to living with trouble-makers.

4.2.4 Dissatisfaction with the decision-making process for structuring the building and room layout

This category contained the following subcategories: 14. Dissatisfaction with inconveniences in the building’s structure and room layout. 15. Anger and resignation about not being able to agree in the decision-making process for structuring the building.

4.2.5 Thinking positively to accept moving house and enjoying the new environment

This category contained the following subcategories: 16. There will be no anxiety about relocation if our requests are met.17. All that is required is an enjoyable, full, and independent life before and after relocation.

5.1.1 Meanings of aging for Hansen’s disease survivors

The burden of relocation following the age-related degradation of mobility and of our community’s mutual aid ability-an illustration of the meaning of aging among Hansen’s disease survivors.

This burden had two aspects among Hansen’s disease survivors: packing baggage and carrying furniture, and adaptation to a new house. These two types of burden are common to general people’s experience; however, participants anticipated greater difficulty than in previous experiences of relocation due to an increased number of household effects and large and heavy furniture. The participants were very poor in previous forced isolation, and were therefore unable to acquire household effects. In turn, that meant they were only required to move a small amount of baggage in previous relocations. In contrast, the participants now lived more abundantly, and relocation was an accordingly large-scale endeavor.

Additionally, survivors were critically worried about increasing dementia and death by overwork following relocation. Before and after the Great East Japan Earthquake, the amount of required insurance for long-term aged-care nursing support (measured in terms of approved support) increased by 1.2 times; however, it increased by 1.9 times in 42 towns directly affected by the earthquake and tsunami, and by as much as 4.9 times in 10 towns whose populations were required to relocate following the accident at the Fukushima nuclear power plant. Increasing nursing support was required due to decreasing physical functions, increasing dementia and depression, and loss of care givers due to the death or relocation of their relatives [7]. This data indicates the negative effects of forced relocation. Aging persons typically have decreased physical resilience, adaptability, recuperative power, and homeostatic stability [5]; nurses must therefore provide sufficient support, and assess if aging residents have developed physical or psychological disorders.

Aging residents found house-moving difficult due to decreased mutual aid ability (for example due to the death of their spouses or other survivors, and the decreased functioning of the survivors’ self-government association, as well as the residents’ own decreasing physical functioning). During forced isolation, this study’s participants received no governmental assistance, and overcame poverty by constructing a mature patients’ community that includes sub-systems for self-sufficiency, self-preservation, and social security [8].They had subsequently taken pride in not depending on the sanatorium staff, and had believed that the staff were unhelpful and merely endured the patients’ presence. This self-government association has managed and decided all daily concerns until recently. Additionally, this community is composed only of elderly persons, as by law the survivors were not permitted to have children. Hence, due to the residents’ aging and death, this community has weakened and lost its ability to manage daily affairs. This community’s diminished coping ability, as well as the participants’ individual aging, led this study’s participants to feel helpless and anxious about adapting to new accommodation, and these feelings led to concerns of dementia or death.Decreasing defensive strength, endurance, adaptability, and resilience affected the residents’ community as well as affecting individual residents, diminishing the community’s ability to preserve homeostasis.

Further, the first category of meaning (“The burden of relocation after the age-related decline of our community’s powers of mutual aid and mobility”) indicates the meaning of aging for this study’s participants: the entire community is aging. Nurses therefore carefully assessed the residents’ personal physical and psychological functioning, and compensated for decreasing functioning in the community while respecting the residents’ autonomy and independence.

5.1.2 The significance of the living environment among Hansen’s disease survivors with multiple and severe sequelae.

Category 2 (“The burden of creating new strategies to live with multiple and severe sequelae in a new environment”) illustrates the significance of the living environment for Hansen’s disease survivors with multiple and severe sequelae.

The optimum temperature of mycobacterium leprae is lower than the human body’s temperature; it therefore multiplies in the skin, nose, peripheral nerves, etc. Regarding eye symptoms, retrograde infection of mycobacterium leprae had caused some survivors to lose their eye sight or their eyes, or to develop amblyopia through corneal injury resulting from lagophthalmos or iridocyclitis. Regarding peripheral nerves, some participants’ sensory, motor, and autonomic nerves were damaged due to damage to the nerve trunk. Regarding sensory nerve disorder, patients easily injure their hands and legs due to loss of perception (resulting from narcosis), and osteomyelitis often necessitated the amputation of fingers. Regarding motor nerve disorder, some patients’ facial expression was changed due to facial nerve paralysis; patients also suffered foot drop and claw toes, wrist drop, ape hand, and claw hand. Regarding peripheral nerve disorder, patients may suffer heat accumulation due to perspiration disorders.

Before the development of Promin, people with Hansen’s disease were often poor and therefore commonly injured themselves due to being forced to work in hazardous environments; additionally, osteomyelitis commonly led to amputation of extremities [4]. Patients’ living environment thus affected the occurrence of sequelae. Additionally, this study showed that the living environment affects the management of sequelae. For example, participants who had been blinded and sensory paralysis had created a mental map of the furniture and other objects in their accommodation, allowing them to navigate their living space freely. Cool natural wind relieved heat accumulation on hot days without exacerbating patients’ neuralgia. Survivors with amblyopia could discern the time, weather, and change of seasons from sunshine entering the room. This illustrates that survivors had constructed an environment that suited them and accommodated their sequelae as well as possible over a long time. Relocation meant the loss of this environment; it was therefore different from a normal persons’ experience of relocation.

Currently, new cases of Hansen’s disease are appearing in developing counties such as India, Brazil, and Indonesia; in contrast, almost no new cases are appearing in developed countries. The prevention and management of sequelae are critical issues in developing countries. Our study indicates that the living environment importantly affects Hansen’s disease patients and survivors regarding the prevention and management of sequelae. Very few studies have examined this topic; further research is therefore required.

Multiple severe sequelae are characteristic of Hansen’s disease; these sequelae impede adaptation to new living environments. For example, patients who have lost their eyesight but retained their sensory nerves may understand objects by touch; however, Hansen’s disease survivors with poor eyesight and sensory paralysis cannot understand objects by touch. Survivors must therefore create and memorize a mental map of their surroundings, and for instance be able to determine their location and direction by the sound of a radio or by feeling resistance from colliding with a wall, or with the help of a spouse with good eyesight. Similarly, survivors with perspiration disorders resulting from autonomic nerve disorders accumulate heat easily, and in west Japan peak temperatures reach 37 degrees Celsius and the average humidity is 70% during summer. We therefore control the temperature using an air conditioner; however, excess cooling can provoke neuralgia. Capturing the natural sea breeze resolves this issue by providing sufficient cooling to prevent heat accumulation while avoiding provoking patients’ neuralgia. Additionally, survivors with dropped and unclosed lips due to facial nerve paralysis, absent nasal septa, saddle nose, amputated fingers, and blindness experience difficulty eating, and commonly drop or soil their faces with food. These survivors therefore aim to eat alone in order to preserve their self-esteem. Survivors’ living environments must thus simultaneously fulfil multiple requirements in order to accommodate the multiple severe sequelae that are characteristic of Hansen’s disease. Relocation therefore entails the loss of this specially-suited living environment that fulfills multiple requirements; it is critical that nurses understand the importance of this loss.

Hansen’s disease survivors protect themselves from physical injury by adapting their living environment. Survivors are injured easily due to anesthesia caused by nerve damage; further, their injuries may easily be severe and become intractable. They compensate for this lack of perception by continually touching objects, and thereby becoming able to safely navigate their environments. The loss of this environment due to relocation thus directly increases the risk of severe and intractable injury.

Of all sequelae, blindness has perhaps the most severe effect on survivors. Before the development of Promin, blindness was one of the so-called three great sufferings (with the other two being the disease’s diagnosis and tracheotomy). At that time, an economic differential existed between patients who were and were not able to work. Blind men experienced the greatest poverty because they could not work; this caused the self-government association to feel pity and led to the establishment of the mutual aid system [1,8]. Before the development of Promin, blindness was a severe sequela that brought poverty; currently, blindness remains the factor that most impedes survivors’ adaptation to new living environments. Caregivers must understand survivors’ difficulty in creating a mental map of a new house at an advanced age, given that the process is likely to lead to injury and will necessarily take place in a context of weakened mental function and homeostatic stability.

As mentioned above, survivors’ sequelae are affected by the living environment regarding both occurrence and management. Multiple severe sequelae are characteristic of Hansen’s disease; survivors’ living environments must accommodate survivors’ sequelae, and blind survivors have the most difficulty adapting to new environments. In Japan, the shrinking survivor population will eventually necessitate laws requiring the amalgamation of survivors and sanatoria with general aged care, due to tight national medical budgets and sanatoria’s high costs of operation and maintenance. Nonetheless, governmental and facility administrators’ integration plans must be informed by an understanding of the essential meaning of relocation among survivors of Hansen’s disease, which differs from that of relocation among the general aging population. Nurses’ management of survivors’ daily life must reflect the same understanding. We regard transmission of this information to medical administrators and national Hansen’s disease survivors’ self-government organizations as constituting advocacyon behalf of the survivors. Further, we must measure the effect of relocation in this population and integrate the resulting data into future reforms.

5.1.3 Adaptation to the loss of an old, familiar, and emotionally important house

Category 4 (dissatisfaction with the decision-making process for structuring the building and room layout) and category 5 (thinking positively to accept moving house and enjoying the new environment) illustrate different patterns acceptance of relocation.

During the initial decision-making process, the sanatorium’s staff explained the relocation plans to the residents’ self-government association and engaged the association in discussion; however, the residents expressed anger and dissatisfaction, reflecting survivors’ anticipation of loss due to moving house. Most importantly, relocationinvolves the loss of a living environment that is palliative of multiple and severe sequelae and which has been constructed over a long time, as explained at above.

Additionally, this study’s participants have lived in their established accommodation for between 60 and70 years, due to the isolation imposed historically by the government. Currently, they are free to go, but are incapable of doing so and feel despair at the prospect of being unable to leave until their death, seeing the sanatorium as a tomb. The participants described attempting to improve their living environment in the understanding that it was where they would remain until their death. They had lived in their old houses while comforting a bereaved spouse or in the vigor of their youth, and therefore held attachments to and important memories of their house, and had formed relationships with their neighbors. Withdrawal and solitary death among elderly people increased following the Great Hanshin Earthquake (January 1995) partly because officials inadvertently severed elderly people’s relationships with their neighbors while providing assistance. In light of our analysis of this phenomenon, following the Great East Japan Earthquake (March, 2011),victims entered temporary accommodation on an area-by-area basis in order to preserve relationships between neighbors. Relocation may entail the loss of a familiar and emotionally important place, and the loss of relationships between neighbors.

Further, aged individuals are confronted with their own aging and imminent death, and failing physical abilities may cause the loss of autonomy and independence through inability to perform ADLs, which in turn may disrupt the survivors’ community (e.g. in section 1.1 above). These multiple losses may cause aging residents to experience multiple layers of grief. Additionally, the weakening of the survivors ‘community entails the loss of social support. In this context of multiple losses, the additional loss of an emotionally important house is likely to provoke an angry, resigned, or dissatisfied reaction, making acceptance of relocation difficult for aging residents. Nurses must understand and care for abstruse grief that manifests as anger, resignation, and dissatisfaction in response to relocation. Further, the experience of repeated loss may cause individuals to enter exhaustive crises [9]. Nurses must assess residents’ recognition of this situation and organize sanatorium staff to provide social support, for instance by using Aguilera’s crisis intervention model.

In contrast, a small number of participants accepted the relocation plans positively and awaited relocation with pleasure. One such participant has relatively light sequelae and finds value in gardening, and had hoped to live outside the sanatorium one day. Another participant has heavy sequelae but is curious, and likes eating, shopping, and interacting with others. The sanatorium therefore needs to allow for value in residents’ lives, as well as compensating for decreasing physical and psychological functioning due to aging and providing end-of-life care. Nurses at B sanatorium should listen to survivors’ life stories and work to pass the history of Hansen’s disease and patients’ sufferings on to future generations [10]. Listening with empathy and helping to pass down experiences importantly helps patient to find value in life. In old age, developmental tasks use integration to protect against despair, and it is important for elderly people to be able to listen to their own life story in order to feel that they have used their wisdom to strengthen society [11]. Nurses must support this process to protect elderly people from despair resulting from multiple losses and provide end-of-life care that makes life worth while for elderly people.