Thesis advisor: Pamela J. Grace / Background: Advances in clinical care over the past 40 years have saved the lives of many infants who previously would not have survived. However, a substantial proportion of these children need on-going technological support and are cared for at home by family caregivers with or without the assistance of home care services. Existing studies describe the experience of family caregivers of technology-dependent children post-discharge, but there is a gap in knowledge related to caregivers’ perceptions of nurse-led discharge teaching. Purpose: To describe caregivers’ perceptions of nurse-led discharge education designed to prepare them to care for their technology-dependent infant in the home setting and to uncover factors that facilitate or hinder its effectiveness. Method: A qualitative descriptive study design was employed to explore caregivers’ perceptions of nurse-led discharge education efforts. Demographic data was collected prior to conducting a semi-structured interview. Interview data were analyzed in an iterative fashion using qualitative content analysis. Sample Recruitment was via purposive sampling aimed to find caregivers of technology-dependent infants under the age of three. Nine participants completed the study. Results: An overarching theme, caregiver learning and self-advocacy is enhanced by positive nurse/caregiver relationships and team cohesion, especially during anxiety-producing transitions in care, emerged from the data. The overarching theme encompasses five major themes and several major themes. The five main themes are: the nurse/caregiver relationship enhances learning; the complexity of care presents challenges to the learning process; team performance affects caregivers’ level of anxiety/uncertainty; caregivers’ level of expertise improves self-advocacy; and transitions in care settings contribute to caregiver anxiety. Conclusion: Insights that contribute to nursing knowledge of the caregivers’ experience of nurse-led discharge education and their perceptions of factors that help or hinder their learning were gained. Implications for nursing include the importance of caregivers’ involvement in care team discussions, the necessity of basing teaching approaches and materials in knowledge of best practices, and improved care coordination and discharge planning. Further nursing research, that can generalize findings and generate interventions is also needed to improve the care of this population. / Thesis (PhD) — Boston College, 2018. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

Background: Advances in technology have led to an increasing number of CMC-technology dependent children being discharged from hospital to their home communities. Families with CMC-technology dependent children require home care nursing services established prior to discharge. The Family-Managed Home Care model is used by some families to acquire these nursing services. Aim: The study purpose was to explore how families with CMC-technology dependent children describe their use of and experiences with using the Family-Managed Home Care model to coordinate nursing care. Methods: Thorne’s interpretive description method was used. Virtual, in-depth, semi-structured interviews were conducted with nine parents of CMC-technology dependent children. Data was analyzed using Braun and Clarke’s reflexive thematic analysis. Results: Parents of CMC-technology dependent children using the Family-Managed Home Care model became their child’s care manager. The process of managing the child’s care occurs in three interrelated and overlapping phases: (1) transitioning home, (2) building the home care team, and (3) partnering to provide care. Control was identified as a central concept that underpinned each step in the overarching process of managing the child’s care. Parents value the control provided by the Family-Managed Home Care model as this alleviated some stress, anxiety, and uncertainty in caring for a CMC-technology dependent child at home. Conclusion: Parents using this model of home care require enhanced support from LHINs and health care providers. Increasing health care provider knowledge of the Family-Managed Home Care model is needed to further support parents. Improved organization of discharges and policy changes are needed. / Thesis / Master of Science (MSc) / Family-Managed Home Care is a self-directed home care model parents of children with medical complexities that are technology dependent (CMC-technology dependent children) utilize to implement home care nursing services. The consistent presence of home care nurses is vital to preserve family functioning and ensure the safety of the CMC-technology dependent child. This study’s purpose was to understand how parents of CMC-technology dependent children use and describe their experiences of coordinating nursing care under the Family-Managed Home Care model. Nine parents were interviewed. Findings indicated that in the process of managing the child’s care (1) transitioning home is overwhelming, (2) parents take on the role of becoming their child’s care manager, (3) parental control is a valuable aspect of using Family-Managed Home Care, and (4) enhanced support is needed for parents using this home care model. Findings can be used to improve support for families using the Family-Managed Home Care model.

京都大学 / 0048 / 新制・課程博士 / 博士(人間健康科学) / 甲第18909号 / 人健博第23号 / 新制||人健||2(附属図書館) / 31860 / 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 田村 恵子, 教授 山根 寛, 教授 木原 正博 / 学位規則第4条第1項該当 / Doctor of Human Health Sciences / Kyoto University / DFAM

No description available.

No description available.

Indiana University-Purdue University Indianapolis (IUPUI) / Technology dependent children such as those who require a feeding tube, tracheotomy or ventilator are a special group of chronically ill children who require complex care on a daily basis. When these children are hospitalized, the accompanying parent and the nurse caring for the child on the inpatient unit must communicate together about the care of the child. Care for the technology dependent child is optimized when parents and nurses both understand the plan of care for the child. To discover the process of parent-nurse communication that results in mutual understanding of the child’s plan of care, a grounded theory study to explore the perspectives of the parents of previously hospitalized technology dependent children was undertaken. The Theory of Shared Communication emerged from the data and illuminates the parent-nurse communication process. The antecedents of the process are respect for own and others expertise. The communication process consists of six communication behaviors; ask, listen, explain, advocate, verify understanding and negotiate roles. The behaviors are nested within each other and all are not necessarily required for the non-linear process to result in the relational outcome of mutual understanding of the child’s plan of care. An integrative review of the literature regarding the process of communication between parents of hospitalized chronically ill children and their nurses shed light on the components of the process, but no study was found that explicated the entire communication process. A subsequent grounded theory study added the perspectives of the nurses to the original theory. No new components of the process were uncovered, but the nurse’s narratives added significantly to our understanding of the communication process. Additionally, parents of currently hospitalized technology dependent children confirmed the propositions of the Theory of Shared Communication.