Table 2: Meanings of relocation for aging Hansen's disease survivors.
Category
Sub category Lower category
1. The burden of relocation following the age-related decline of our mobility and our community’s mutual aid ability.
1. Because we are all getting old, our ability to help each other is decreasing (e.g., due to the death of colleagues or spouses, and the decreasing functioning of the survivors' self-government association, as well as age-related decreases in individual physical functioning) 1) Mutual aid among Hansen's disease survivors has decreased due to colleagues' death and aging
2) The functioning of the residents' self-government association has decreased due to residents' death and aging
3) Relocation is an age-related burden for us, because of decreasing physical functioning, perception, memory, and visual ability.
4) I hesitate to request support from the sanatorium staff or resident's helpers, because the staff must care for many other residents as well as for me. Additionally, helpers who have light sequelae and who have continued to help residents with severe sequelae for a long time are also aging and feel the burden of caring for residents with severe sequelae.
2. Fear of increasing dementia and early death due to changing environment and overwork from relocaion 5) I think if we move house now we are old, dementia among us will increase.
6) I think if we move house now that we are old, the overwork will cause sickness and death to increase.
7) I feel anxiety for the future due to aging.
3. Indeterminate anxiety due to the impossibility of imagining life after house-moving 8) I will not know unless I go to the new house
4. Bitter memories of past instances of relocation. 9) After a former relocation, I had difficulty becoming acclimatized to my new life and I have just now become acclimatized.
10) I had disagreeable experiences in previous moves.
5. The burden of packing and damaging the living environment by carrying household goods 11) Packing is a burden for me.
12) Carrying household goods brings the deterioration of the living environment; for example, by bringing noise and dust.
2. The burden of creating new strategies in order to live with multiple and severe sequelae in a new environment
6.Misgivings about being watched while eating among blind survivors who are embarrassed of eating messily 13) I don't want people to see me eating because my blindness causes me to make a mess.
7. The burden of living with blindness and sensory paralysis, and having to lose one's mental map of one's environment and create a new map of a new environment. 14) I have a mental map of my house because I have lost my eyesight and cannot identify items by touch due to sensory paralysis. I have memorized the position and arrangement of items in the room and made a mental map of them over a long time. After house-moving, I would need to make a new mental map of the new house; this is a great burden for me.
15) Because I had gotten used to my old house and my body understands how I must move, I can move like a person with good vision.
16) Because I cannot see and cannot perceive by touch, I know my direction by the sound of the radio. And when I change my course I know when I have come to a dead end because I can feel the resistance against my body.
17) I must re-remember the new layout and position of items at the new house, although I am aging and my memory is failing. I have no confidence about re-learning and feel anxious about becoming familiar with the new house because I am blind and have sensory paralysis, and decreasing memory function.
18) I will have difficulty, because my spouse who could see is dead.
19) I cannot understand the layout of the new house, because I cannot see its blueprints.
8. Suffering the loss of a good residential environment that accommodated ones' sequelae, neuralgia, thermal regulation disorder, and poor vision 20) I hope not to lose this living environment that is currently perfect, where natural wind may enter. Natural wind alleviates both my neuralgia and my thermal regulation disorder.
21) I hope not to lose this living environment that is currently perfect, where I can understand the time, weather, changing seasons, and my direction by the sunlight that entered my room.
9. Fear of increasing injuries that are liable to be more severe due to the characteristics of Hansen's disease, because of loss of a living environment that had been adapted to accommodate hand and leg sensory disorders and prevent injuries. 22) Because of sensory paralysis, I cannot feel when I am injured, and our injuries often become severe and lead to osteomyelitis. So we adapt everything in my room over a long time to prevent injury.
10. Loneliness of a comfortable residential and personal environment as one's final abode. 23) My favorite house is my old house, my old house is comfortable for me.
24) I hope to continue living here with my familiar neighbors and staff until end of my life.
11. The increasing burden of caring for an aging blind spouse. 25) Because my blind spouse will not adapt to a new house easily, my burden of care for my spouse will increase.
3. Disagreeableness of having one's life disturbed
12. Misgivings about being disturbed from a familiar daily rhythm built for long time. 26) I don't want to break from my daily rhythm that I have preserved for a long time.
13. Concerns about being disturbed due to living with trouble makers. 27) I don't want to to live with troublemakers.
28) I am worry that nurses will not give me much care, because they will be busy with other residents who cannot perform daily life activities alone due to weak physical functioning from aging and multiple severe sequelae.
4. Dissatisfaction with the decision-making process managing building structure and room layout
14. Dissatisfaction about inconvenient building structure and room layout. 29) The layout and arrangement of the new houses will be inconvenient for our lives.
30) Because caregiver convenience will decide things, our familiar Japanese style of the good old days is lost.
31) I want to live in a house that allows natural wind and sunshine to enter.
15. Angry and resigned about not being able to agree in the process of deciding on the structure of the new building. 32) The new house is not suitable as a place to die.
33) We cannot accept the process that decided the design and layout of the new building. I feel angry and oppose the move
34) I don't want to accept the move but I have no choice.
35) I feel discontent to gather residents at one place due to decreasing number of residents.
5. Thinking positively to accept relocation and enjoy the new environment.
16. There is no anxiety about moving if our requests will be met. 36) I will overcome the move, because my relationships with my colleagues and the sanatorium's staff are good and I will receive the nurses' care.
37) My sequalae is light: I have eyesight and no motor paralysis or sensory paralysis. I will overcome the relocation.
38) Because my spouse will help me/our couple will help each other, if my spouse will be in good, I will overcome the relocation.
39) If others will help with packing the baggage, I do not feel anxious.
17. All that is necessary is enjoying a full and independent life before and after relocation. 40) I understand and consent to the circumstance that we must move.
41) I wish to live with independence and autonomy.
42) I will have a new life after relocation, I feel joy and expectation.
43) I had hoped to leave this island and live in an apartment in the mainland, but this hope was not fulfilled. So I am looking forward to this move.
44) I hope to fully enjoy my remaining years of life at the new house, because I understand that the new house is where I will die.