The development of medical technology has influenced the variation of options in relation tohealth and lifestyles of people. Simplified and lightened ventilators for home settings, the shiftof notion such as normalization and integration, and the inclusion in the payment system formedical services since 1990, has led home-ventilators to become widespread into thecommunity. This encouraged home-ventilator users to select living at home, and contributedsocial participation, e.g., education or employment, improving their quality of life. While, somemothers of children with ventilators suffer from burnout syndrome, family suicide, or childabuse, because they are unable to use support from relatives as a close social resource, due tothe lack of knowledge and/or skills about medical care and also suppressive regulations. Thecurrent trend towards nuclear families and isolated families worsens the situation.The definition of what is medical care has not been decided by consensus among relatedprofessionals, because this issue encompasses multiple areas such as education, medicine, andwelfare. The majority of papers that deal with this issue have diminished it either as “problemsof work sharing between family and professionals”, or “problems among differentprofessionals”, disregarding the essential matter.Therefore, the aim of this thesis is to redefine the issue of medical care by clarifying theconstruction of medical care, and to suggest several solutions for the problems.In section one, a pilot research was conducted to find out the needs of a ventilator user who hastwenty years of experience of running an NPO (non-profit organization) for home-ventilatorusers. Her needs were self-determination, which is similar to social choice theory by AmartyaSen, about their health and their social participation. The immature notion of independence hascaused inadequate support by professionals. Following the research, a questionnaire wasdisseminated to families of children with ventilators. One-hundred and eleven familiesresponded, suffering from physical and mental fatigue with a feeling of social isolation.In section two, stress for family caregivers was focused on. Using the ABC-X model (R. Hill)as a tool for analysis, three factors namely: “learning”, “teaching/delegating care”, and“recognition of fatigue and work sharing” were found and attempted to create new model forfamily stress. Family caregivers struggled to manage their physical/mental fatigue as well as thecritical situation e.g. poverty or self-isolation. However, few created their own social resourcesby starting a NPO by themselves.In section three, three major family adaptation theories, the stage theory, value change theory,and chronic sorrow, were historically reviewed. Two limitations were found, firstly,individualized professional support that based by the dichotomy between individual and society,and secondly, the lack of perception about interaction, such as self-socialization and sociallearning, which comes from social adaptation theory.In section four, the impact for professionals from the diffusion of medical technology wereinvestigated by utilising the chasm theory (J. Moore). Four chasms which disturb disseminationof home-ventilators in the community were nominated: 1) uneven distribution of doctors whoare able to use ventilators; 2) reverse phenomenon of skill acquisition, for example family cantrain novice professionals about how to use their child’s ventilator in certain situation; 3)uncertainty of educational responsibility/accountability for medical care in the community; 4)narrow range of practice allowed for non-medical professionals.In section five, the fact that some medical care was already provided before partial lawmodification in 2012, was described. Medicalization (Conrad, P. & Schneider, J. W.),legalization, and licensing system for care providers caused powerlessness of relatedprofessionals, for example occupational therapists, physiotherapists, speech therapists andspecial school teachers, as well as people and/or families. The roles of the gray zone wasreconfirmed as it increases the discretionary powers and the chance of communication. Twocharacteristics of medical care skill, situational risks and an undividable peculiarity, werediscovered, and were required to reflect the related regulations from the status quo.In section six, an international comparison of medical provision systems was discussed. Fromobservation of personal assistance system in Sweden, creation of training system and settingadequate work conditions for personal assistants were extracted as an important subject in Japan.Flexibility of laws to deal with different situations, clear statements about where is theresponsibility/accountability for tasks, status of personal assistants were discovered fromparticipatory research in Australia and an international comparison of regulations amongnursing professional organizations in America, UK, and Australia.In section seven, restarting analysis from a family point of view. A focused interview wasconducted for mothers of children with ventilators. Families were searching for domestic and/orsocial resources, teaching themselves and/or someone inside/outside of their family at the sametime. Creating/utilizing resources, they were looking around for whole care which was requiredby their children. Approximately twenty percent of families stayed at home, going out less thanone time per month. Family adjustment process had characteristics of ambiguity, heterovelocity,and synchronicity in each family member. The importance of caring from two perspectives,family as a whole and family as a group of individuals was mentioned. Then, the societalprocess for law modification by self-help-groups was also analyzed using Engestrom’s activitytheory. Miniaturization of society, assurance of equal power of opinion, effectiveness ofdecision made, and frequency of meeting were thought of as a necessary condition of interactionto empower every stakeholder, including professionals.In the final section, the construction of medical care was, “difficulties of making socialagreement which affects the level of powerlessness of individuals/families/professionals due tothe delay of recognition of professionals about a new technology, the delay of social agreementin law, and the delay of ideology development about the independence or disability, compared tothe diffusion speed of the technology beyond formal and informal boundaries; and thecharacteristics of medical care skills, for instance situation-dependent risk, undividablepeculiarity, professionalism bias causes it to be more problematic.” Then, the medical care issuewas redefined, as “a communication issue that rose by the situational change such asdevelopment of technology, regarding organizing social learning to solve powerlessness ofmember of the society by participation and continuous interaction”.Moreover, a number of dilemmas were extracted from previous sections. These dilemmas werecategorized into six, namely: “Agreement”, “Learning”, “Self-determination”, “Economy”,“Professionalism”, and “Work-sharing”. Although these dilemmas overlaps each other, thesolution seems to require to be apprehending that it is not led by “must”, but led by the respectof self-determination at individual level. The construction and function of hierarchicalcontinuous learning system was presented, describing development of medical technology andlearning of individuals, families, and professionals, and social learning such as law modificationwhich was mentioned above.Overall, three problems were found: 1) the limitation of individualized professional support; 2)less equipped continuous system for “social learning”, including technological development;and 3) suppressive law system and exclusion due to the overestimate of professionalism in theprocess of obtaining social consensus. Three suggestions were also made: 1) organizedprofessional support beyond the construction of institutions they belong, 2) creating a gray zonefor empowerment for children/people with ventilators, their families, and their care providers,and 3) accession of personal assistants’ social role as formal generalists with professionaldignity.
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