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Background. Advances in healthcare have resulted in a growing population of Children with Medical Complexities (CMC). Medical management of the complex needs of CMC has traditionally taken place in hospital settings, such as clinics, emergency departments, and hospital wards, by specialized teams of healthcare clinicians. While access to expert-level care is necessary, the hospital-based model of care is expensive and inconvenient and has resulted in harms such as medical errors conferred upon CMC. Models of care that allow for expert-delivered hospital-to-home care for CMC are needed. The aim of this dissertation was to investigate the needs, performance, and perceptions of CMC families and clinicians when using a hospital-to-home digital health system called DigiComp Kids. Methods. This study was guided by A Holistic Framework to Improve the Uptake and Impact of eHealth Technologies, which attends to technological, human, and contextual variables influencing virtual care. A scoping review was conducted to provide an overview of how digital healthcare has been used with medically fragile children, before co-designing the DigiComp Kids system with CMC family members and clinicians. Usability testing of DigiComp Kids was conducted measuring user effectiveness, efficiency, satisfaction, and experiences. Results. Across studies in this dissertation, technological, human, and contextual factors each played a role in the usability of digital health systems, including DigiComp Kids. In the scoping review, these factors influenced the acceptability, accessibility, and implementation success of digital healthcare systems for CMC. During DigiComp Kids co-design and usability testing, participants emphasized how these factors affected their willingness to engage with the system, how it fit into their lives and workflows, and where improvements could be made. Conclusions. This study highlights the importance of engaging with end-users as well as attending to technological, human, and contextual factors when designing and testing digital health systems. / Thesis / Doctor of Philosophy (PhD)

Thesis advisor: Judith A. Vessey / Background: The number of children with medical complexity (CMC) cared for by parental caregivers is increasing in the United States. Studies reveal parental caregivers experience significant caregiver burden, often attributed to the disease management required by CMC. However, literature has also identified numerous systemic challenges that arise while caring for CMC at home. The impact of systemic challenges on parental caregiver burden has not been examined, thus, the purpose of this dissertation is to explore the relationship between these systemic challenges and parental caregiver burden. Methods: Three studies were completed to explore this relationship. An integrative review of literature from 2014-2023 was completed to identify systemic challenges within the home care system and whether parental caregivers attribute burden to these challenges. A case-control secondary analysis of the National Survey of Children’s Health compared levels of burden between parental caregivers and parents of children without medical complexity as they relate to systemic challenges. Lastly, a qualitative descriptive study was conducted with parental caregivers living in Massachusetts to examine their experiences of caring for CMC. Results: The integrative review of 10 articles revealed a dynamic and interconnected relationship between systemic challenges and parental caregiver burden. The secondary analysis comparing 1,352 parents (n = 676 parental caregivers) revealed significant associations and increased odds of experiencing burden among parental caregivers while navigating systemic challenges. Finally, three themes capturing the experiences of parental caregivers (N=11) emerged from collected qualitative data; lack of discharge preparedness causes emotional distress, care becomes increasingly complex creating new unanticipated challenges, and the psychological toll of parents assuming provider role. Conclusion: The findings from this dissertation provide data-driven evidence to support a relationship between systemic challenges of caring for CMC and parental caregiver burden. This greater understanding of parental caregiver experiences highlights the need for a more holistic perspective in evaluating the care of CMC at home such that systemic challenges, and not a child’s medical needs, are the focus of future exploratory, intervention, and health policy work. / Thesis (PhD) — Boston College, 2024. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

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Children with medical complexity (CMC) require increased number and length of hospitalizations, and increased need for care coordination.1-3 Many complex children with neuromuscular diseases have scoliosis, or a deformity of the spine. Often, scoliosis in these patients affects multiple organ systems and requires spinal fusion surgery to repair the deformity and decrease the likelihood of further organ damage.4,5 While it is well-known that spinal fusion surgery is costly and a high-risk procedure, little research has evaluated the perioperative process of spinal fusion patients. Furthermore, few care pathways exist for medically complex patients undergoing spinal fusions.6 This study examines the pre-, peri-, and post-operative experiences of families of patients undergoing spinal fusion surgery at Boston Children’s Hospital. Providers, organization, leadership and teamwork, and overall outcomes are assessed by this qualitative study. Initial data suggest that a pathway improving coordination and communication, especially among interactions with the surgical coordinator, should be implemented to improve scheduling of surgery and appointments throughout the perioperative process

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Les progrès médicaux, technologiques et scientifiques réalisés au cours des dernières décennies permettent à de nombreux enfants de survivre à la prématurité, à la maladie ou à des traumatismes physiques. Certains survivent avec des problèmes de santé chroniques qui altèrent le fonctionnement de plusieurs organes. Certains doivent composer avec des incapacités physiques ou intellectuelles légères, modérées ou sévères et sont maintenus en situation de dépendance médico technologique dans un contexte où les services d’aide et le soutien à domicile ne répondent pas aux besoins réels des enfants et de leur famille. Ces avancées dans le champ de la santé offrent des choix auparavant inexistants : sauver ou non la vie de l’enfant? Ces nouvelles possibilités imposent aux parents des décisions parfois difficiles qui engagent des valeurs, des croyances et ont d’énormes conséquences pour les acteurs (l’enfant, ses parents, sa famille, les membres de l’équipe soignante et des professionnels), les institutions et toute la société. Ces choix renvoient à des visions des choses et du monde, à différentes conceptions de la vie et de la mort. En nous intéressant à la trajectoire décisionnelle de parents d’enfant atteint d’une condition médicale complexe, nous souhaitions comprendre la façon dont les parents prennent des décisions à propos de leur enfant. Nous voulions également saisir les motifs décisionnels et leur façon d’évoluer avec le temps. La pensée complexe d’Edgar Morin constitue l’assise théorique principale de la recherche. Nous avons réalisé des entretiens semi-dirigés auprès de 25 parents dont 15 mères et 10 pères. Parmi les principaux résultats, notons la multiplicité des types et des objets de décision, l’influence multisystémique des motifs décisionnels et la présence de processus qui se développent au fil de la trajectoire. Les résultats permettent de proposer quelques repères susceptibles d’améliorer l’accompagnement des parents exposés à des décisions complexes à propos de leur enfant gravement malade. / Medical advances made over the last decades allow many children to survive prematurity, illness or physical trauma. Some survive with chronic health problems that impair the functioning of several organs. Some must deal with minor, moderate or severe physical or intellectual disabilities and are technology-dependent. This has huge consequences for the actors (the child, his parents, his family, members of the healthcare team and professionals), the institutions and the whole society. By focusing on the decision-making trajectory of parents of children with a complex medical condition, we wanted to understand how parents make decisions about their child to improve support for parents decision-making. The complexity of Edgar Morin is the main theoretical basis of the research. We conducted semi-structured interviews with 25 parents (15 mothers and 10 fathers). Key results include the multiplicity of types and decisions objects and the multisystem influence decision-making patterns. The results also show how influences change accross decision-making trajectory for these parents. The results allow us to propose some benchmarks that could improve support for parents exposed to complex decisions about their seriously child.

Introduktion: Hos barn med flerfunktionsvariation förekommer en medicinsk sårbarhet och ett ökat behov av intensivvård. Forskning visar att vid intensivvård av barn med flerfunktionsvariation bör familjen inkluderas i vårdteamet och ses som expert på barnet. Forskning visar även att familjecentrerad omvårdnad är viktigt för att främja hälsa och öka vårdkvalitén hos barn med flerfunktionsvariation och deras familj. Syfte: Syftet var att beskriva intensivvårdssjuksköterskans erfarenheter av omvårdnad tillsammans med familjen till barn med flerfunktionsvariation. Metod: Studien var en kvalitativ intervjustudie med deduktiv ansats. Semistrukturerade intervjuer utfördes. För dataanalysen valdes teoridriven tematisk analys. Resultat: Resultatet bildade två huvudteman: ”Familjen är en förutsättning för omvårdnaden” och ”Familjen distanseras från omvårdnaden”. Konklusion: Familjen var en förutsättning i omvårdnaden, då de var specialister på att ge omsorg till sitt barn. Samtidigt kunde familjen ibland distanseras från omvårdnaden. Det behövs ett familjecentrerat omvårdnadsperspektiv på IVA för att vårda barn med flerfunktionsvariation och deras familjer. / Introduction: Children with medical complexity (CMC) have a medical vulnerability and an increased need for critical care. Research shows that when CMC are being treated in the critical care unit, the family should be included in the care team and be seen as an expert of the child. Research also shows that family centered care is important for promoting health and increasing the quality of care for CMC and their families. Aim: The aim was to describe the critical care nurses’ experiences of nursing care with the family of children with medical complexity. Method: The study was a qualitative interview study with a deductive approach. Semi-structured interviews were conducted. For the data analysis, theoretical thematic analysis was chosen. Result: The result formed two main themes: "The family is a prerequisite in the nursing care" and ”The family becomes distanced in the nursing care". Conclusion: The critical care nurses’ described that the family is a prerequisite for the nursing care, due to the family’s specialist knowledge of their child’s needs. On the other hand, sometimes the family are distanced from nursing care due to various circumstances. In the nursing care of CMC and their families, a family-centered nursing perspective is required.