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京都大学 / 新制・課程博士 / 博士(人間健康科学) / 甲第24096号 / 人健博第103号 / 新制||人健||7(附属図書館) / 京都大学大学院医学研究科人間健康科学系専攻 / (主査)教授 青山 朋樹, 教授 恒藤 暁, 教授 今中 雄一 / 学位規則第4条第1項該当 / Doctor of Human Health Sciences / Kyoto University / DFAM

Background: One in five households has a child with special health care needs (SHCN). Such parents report poorer mental health, greater depressive symptoms, and more restrictions in instrumental activities of daily living (IADL). The quality of mental and physical health of all family members' continuingly declines. Objectives: To evaluate the effects of the current ITK Healing Retreat Week program on familial well-being via introduction of CAM methods through assessment of 1) mood based on affect 2) self-efficacy 3) changes in coping skills 4) growth over time in parents/caregivers who have children with SHCN. Methods: A secondary analysis of data from sixteen parents/caregivers who participated in the ITK Healing Retreat Week July 13-19, 2014. Scores from Positive and Negative Affect Schedule (PANAS) with Serenity subscale, Post Traumatic Growth Inventory (PTGI), and Self-Efficacy Scale (SES) were analyzed using SPSS. Content analysis was performed on open-ended questions from post, three and six-month post retreat questionnaires. Results: Before to immediately after the retreat week there was a statistically significant decrease in negative emotions and increase in positive mood state, ability to feel calm/at peace, relate to others, see new possibilities, and confidence in ability to perform certain care needs (<.001). From post to three-month post retreat the families' confidence in ability to perform certain care needs did not change (<.001), but declined from three to six month post retreat in a statistically significant manner (.044). Content analysis indicated that the biggest benefit for the families was being in a supportive community and having an increase in positive emotional states. At six-months post retreat an increase in receptivity was additionally reported. Conclusion: The ITK Healing Retreat Week program positively impacted families who have children with SHCN in multiple positive ways: increased mood, more confidence, ability to relate better to others and ability to see new possibilities. In effort to make this program generalizable or even replicable, further research needs to be done on the mechanism of change, the structure that creates this change, and how to make such a change sustainable by investigating a new retreat format and alternative research tools, questions, and scales.

Este estudo objetivou identificar na literatura de saúde textos que abordassem aspectos do desenvolvimento de crianças dependentes de ventilador; caracterizar ações de cuidado realizadas ou propostas para a promoção do desenvolvimento dessas crianças, assim como, analisá-las, segundo o referencial de necessidades essenciais da infância proposto por Brazelton e Greenspan (2002). O processo de busca bibliográfica realizado nas bases de dados PubMed, Lilacs, Embase e Cinahl e a leitura dos resumos, possibilitaram a organização dos artigos localizados em 17 grupos temáticos, sendo eleitos para a análise temática de conteúdo somente os que potencialmente continham informações relacionadas às perguntas da pesquisa. O corpus da análise constituiu-se de 35 artigos internacionais que pertenciam aos seguintes grupos temáticos: (1) processo de transição do hospital para casa/comunidade, (2) experiência da criança e da família, (3) interação criança-cuidador, (4) qualidade de vida, (5) proteção e segurança e (6) artigos de revisão. Os critérios para seleção dos documentos e análise pautaram-se no modelo metodológico de análise de Bardin (1977). A análise temática possibilitou a construção de duas categorias sobre o ambiente de cuidados e o desenvolvimento de crianças dependentes de ventilador. A categoria Concepções e práticas que resultam em cuidado desigual agrupou as diferentes concepções sobre infância e dependência de tecnologia ventilatória, e, como conseqüência, os contextos de assistência diversos, ou mesmo, opostos aos quais as crianças em ventilação prolongada foram submetidas. Revelou as ações, pensamentos, experiências e situações que dão existência ao contexto desfavorável ao atendimento das necessidades integrais da criança ou do adolescente dependente de ventilador, assim como aquelas que proporcionam condições mais favoráveis ao desenvolvimento. Sinalizou tanto as oportunidades como os desafios que estavam presentes em todos os cenários de atenção à saúde da criança e estabeleciam-se nas interações entre criança, ambiente e cuidador, resultando em maior ou menor desenvolvimento do potencial de cada criança. A categoria Potenciais de desenvolvimento efetivados versus potenciais de desenvolvimento comprometidos forneceu evidências sobre a competência da criança dependente de ventilador nas tarefas esperadas do desenvolvimento, tais como a socialização e o aprendizado, favorecidas no contexto de cuidados integrais. Ainda, descreveu distúrbios físicos, comportamentais e de desenvolvimento, potencialmente associados a contextos desfavoráveis, marcando os prejuízos a que seu potencial foi submetido. Notaram-se, nos artigos analisados, a preocupação e o empenho dos pais, profissionais e instituições para melhorar o contexto de atenção às necessidades de saúde das crianças dependentes de ventilador. No entanto, destacaram-se as ações que privilegiam a necessidade de proteção física e segurança em detrimento das demais necessidades essenciais para o desenvolvimento / This study aimed to identify in health literature papers that dealt with developmental aspects of ventilator-dependent children, to characterize care actions proposed or given so as to promote these childrens development, and at the same time to analyze such actions according to the Irreducible Needs of Children framework proposed by Brazelton and Greenspan (2002). Search for bibliography in PubMed, Lilacs, Embase and Cinahl and abstract reading made it possible to organize articles in 17 theme groups. However, theme analysis was carried out using only the articles that potentially contained information related to the research questions. Analysis corpus is made up of 35 articles from foreign sources belonging to the following group themes: (1) transition process from hospital to home/community, (2) childs and familys experience, (3) child-care giver interaction, (4) life quality, (5) protection and safely and (6) review articles. Criteria to select documents and analysis followed Bardins (1977) methodological model analysis. Theme analysis enabled the construction of two categories about care settings and ventilator-dependent children. The category Concepts and practices resulting in unequal care encompassed different concepts about childhood and ventilation technology dependence and thus the different or even opposite settings concerning care to which prolonged ventilator-dependent children are submitted. This concept also revealed actions, thoughts, experiences and situations that bring about both the unfavorable setting of providing for the comprehensive needs of ventilator-dependent child or adolescent and those that provide more favorable conditions for their development. It also pointed to opportunities and challenges present in all settings pertaining to the childs health care that are established in the interactions between child, environment and caregiver, resulting in higher or lower level of development of each childs full potential. The category Effective developmental potentials vs. Compromised developmental potentials provided evidences about competences of the ventilator-dependent child to perform developmental tasks, such as socializing and learning, which a comprehensive care setting favors. It also described physical, behavioral and developmental disorders potentially associated with unfavorable settings which compromise the childs and adolescents full potential. The analyzed studies showed that parents, health care professionals and institutions are concerned and making efforts to improve the health care setting of ventilator-dependent children. However, actions aimed at providing physical protection needs and safety are more favored to the detriment of other essential needs for their full development

We examined associations between trait hope and preparation for future care needs (PFCN) among 66 older adult primary care patients in western New York. Participants completed a questionnaire assessing PFCN (awareness, information gathering, decision-making, concrete planning, and avoidance), and the Adult Trait Hope Scale. In multivariate regressions, lower hope, particularly less agency, was associated with more awareness of needing care, whereas higher hopefulness, particularly pathways thinking, was associated with increased decision-making and concrete planning. Greater hopefulness appears to be linked to goal-directed planning behaviors, although those with lower hope may actually be more aware of the need for planning. Evidence-based programming that encourages learned hopefulness may contribute to enhanced health planning and decision-making among older adult primary care patients.

ObjectiveWe examined the self-reported preparedness of hospitalized adolescents and young adults (AYA) for transition from pediatric to adult-oriented health care with regard to: 1) previous health care transition (HCT) preparation, 2) Self-Determination Theory (SDT) constructs of health self-management autonomy and competence, and 3) their perception of medical knowledge, attitudes, and concerns.MethodsFrom 2013 to 2015, 139 hospitalized patients aged 15 to 21 years completed a 40-item survey on HCT preparation, attitudes, concerns, and perception of knowledge adapted in part from validated questionnaires of the Department of Health and Human Services, Maternal and Child Health Bureau, and SDT Treatment Self-Regulation Study.ResultsFewer than 40% of all respondents endorsed previous HCT preparation such as providers discussing taking responsibility for their health, transitioning to adult providers, and only 20% had discussed future health insurance needs. Of our AYA population, 84% had 1 or more special health care needs. Older patients, female patients, and those with increased HCT preparation scores had increased autonomous motivation, positive attitudes toward transition, yet also increased transition concerns. Higher autonomous motivation and perceived competence correlated with increased perception of knowledge (P = .002, < .001 respectively) and more positive attitudes toward transition planning (P < .001, .054 respectively). Multivariate regression analysis revealed those with increased HCT preparation and those with increased perceived competence had increased perception of knowledge (β = .25, P = .005 and β = .35, P < .001).ConclusionsOur findings suggest that hospitalized AYA received limited education and preparation regarding key elements of HCT to adult-oriented health care. Moreover, those previously exposed to transition preparation efforts were more likely to have motivation and a sense of competence in HCT skills.

PURPOSE: (1) Investigate supportive care needs and preferences of parents of children with cancer (2) Assess the feasibility and preliminary outcomes of a Parent Support Group Intervention (PSGI). METHODS: One-hundred and eight parents completed the Parent Support Survey (PSS). Data were utilized in the creation of a PSGI. The PSGI consisted of eight 1.5-hour sessions encompassing guided group discussion. As part of feasibility, acceptability, recruitment/retention and preliminary outcomes were assessed. Parents completed outcome measures assessing knowledge of disease/treatment management, community/hospital/family resources, perception of social support and feelings of distress/anxiety. RESULTS: From the PSS, 86/108 (80%) of parents expressed interest in a PSGI. Fourteen parents attended the PSGI only once and 14 parents attended the PSGI more than once. Outcome measure results depict favourable changes after group attendance. Recruitment and retention data highlight challenges. CONCLUSIONS: Information gained from this study will be used to improve planning and delievery of future PSGI’s.

PURPOSE: (1) Investigate supportive care needs and preferences of parents of children with cancer (2) Assess the feasibility and preliminary outcomes of a Parent Support Group Intervention (PSGI). METHODS: One-hundred and eight parents completed the Parent Support Survey (PSS). Data were utilized in the creation of a PSGI. The PSGI consisted of eight 1.5-hour sessions encompassing guided group discussion. As part of feasibility, acceptability, recruitment/retention and preliminary outcomes were assessed. Parents completed outcome measures assessing knowledge of disease/treatment management, community/hospital/family resources, perception of social support and feelings of distress/anxiety. RESULTS: From the PSS, 86/108 (80%) of parents expressed interest in a PSGI. Fourteen parents attended the PSGI only once and 14 parents attended the PSGI more than once. Outcome measure results depict favourable changes after group attendance. Recruitment and retention data highlight challenges. CONCLUSIONS: Information gained from this study will be used to improve planning and delievery of future PSGI’s.

PURPOSE: (1) Investigate supportive care needs and preferences of parents of children with cancer (2) Assess the feasibility and preliminary outcomes of a Parent Support Group Intervention (PSGI). METHODS: One-hundred and eight parents completed the Parent Support Survey (PSS). Data were utilized in the creation of a PSGI. The PSGI consisted of eight 1.5-hour sessions encompassing guided group discussion. As part of feasibility, acceptability, recruitment/retention and preliminary outcomes were assessed. Parents completed outcome measures assessing knowledge of disease/treatment management, community/hospital/family resources, perception of social support and feelings of distress/anxiety. RESULTS: From the PSS, 86/108 (80%) of parents expressed interest in a PSGI. Fourteen parents attended the PSGI only once and 14 parents attended the PSGI more than once. Outcome measure results depict favourable changes after group attendance. Recruitment and retention data highlight challenges. CONCLUSIONS: Information gained from this study will be used to improve planning and delievery of future PSGI’s.