scholarly journals 99 Impact of COVID-19 pandemic on children with medical complexity: Parental perspective about the role of a Complex Care program

2021 ◽  
Vol 26 (Supplement_1) ◽  
pp. e71-e72
Author(s):  
Louis-Philippe Thibault ◽  
Maria Marano ◽  
Lydia Saad ◽  
Marie-Joëlle Doré-Bergeron ◽  
Karine Couture ◽  
...  
Keyword(s):  
Problem Solving ◽  
Tertiary Care ◽  
Care Program ◽  
Complex Care ◽  
Children With Medical Complexity ◽  
Parental Experience ◽  
Phone Calls ◽  
Medical Complexity ◽  
The Media ◽  
The Impact

Abstract Primary Subject area Complex Care Background The COVID-19 pandemic led to major and rapid organizational and structural healthcare changes including a switch from ambulatory services towards telemedicine and decreased access to home services. Children with medical complexity (CMC) require many medical services and are generally prone to infectious complications. Little is known about the impact of the pandemic on families of CMC. Understanding how CMC families experience the COVID-19 pandemic is essential to tailor healthcare services to answer their needs more effectively. Objectives We explored parental experience of CMC during the COVID-19 pandemic, and how the complex care program (CCP) answers their new needs. Design/Methods This qualitative study was conducted between July 2020 and January 2021 in a tertiary care pediatric university hospital centre. Semi-structured interviews were done with parents of CMC, admitted in the CCP at least 1 year prior to the beginning of the pandemic. The interview guide was co-constructed by physicians and nurses from the CCP. Interviews were transcribed verbatim and analyzed using NVivo. Data were organized into codes and categories. Thematic content analysis was performed by grouping categories and highlighting emerging themes. Results Eleven families (14 parents – 4 fathers, including 3 couples) were interviewed. The first wave of the pandemic seemed to have caused important uncertainty and anxiety amongst parents of CMC. Almost all the parents reported cancelling numerous appointments in order to avoid coming to the hospital at all costs. Some parents, worrying specifically about the fragility of their child, stopped working and stayed home to reduce transmission risks. Fear of facing shortages in medications, nutritional supplements and medical equipment for home care was frequently expressed. They did not express worries about the de-confinement periods. The support provided by the CCP’s staff was greatly appreciated, namely active problem-solving via phone calls, videoconferences, emails and pictures, leading to fewer hospital visits and less need to seek emergency care. Some reported that more general communication from the CCP (e.g., a weekly information email), would have helped to interpret the overwhelming amount of information from the media. Parents expressed a strong desire to maintain telemedicine services after the pandemic. Conclusion The COVID-19 pandemic brought additional worries to parents of CMC enrolled in CCPs, including fear of shortages and virus transmission. Direct communication with the CCP and remote problem-solving were greatly appreciated by families. Improvement to follow-up include finding ways to help interpreting data from the media.

128 Evaluation of a Secure Messaging System for Children with Medical Complexity

2021 ◽  
Vol 26 (Supplement_1) ◽  
pp. e90-e92
Author(s):  
Camilla Parpia ◽  
Susan Miranda ◽  
Madison Beatty ◽  
Clara Moore ◽  
Sherri Adams ◽  
...  
Keyword(s):  
Clinical Care ◽  
Healthcare Providers ◽  
Care Program ◽  
Online Information ◽  
Complex Care ◽  
Children With Medical Complexity ◽  
Secure Messaging ◽  
Personal Support ◽  
Phone Calls ◽  
Medical Complexity

Abstract Primary Subject area Complex Care Background The Connecting2gether (C2) platform is a secure online information-sharing tool that aims to improve care for Children with Medical Complexity (CMC) and their families. A key feature of C2 is secure messaging that enables parents to communicate with their child’s healthcare providers (HCPs) in an easy and timely manner. Objectives The objectives of this project are to (1) describe the usage of the secure messaging system; and (2) conduct a thematic comparative evaluation of the secure messaging tool, and email and phone calls. Design/Methods This study is a sub-component of a larger project investigating the overall feasibility and acceptability of the C2 platform. Parents of CMC were recruited from a tertiary level Complex Care program to use the C2 platform for a period of 6 months. Messaging data was extracted from C2 usage reports, and phone and email documentation was extracted from the patient’s electronic medical record. Codes were developed iteratively through comprehensive review of the C2 messages. Message, phone, and email data were then coded by two investigators using thematic analysis. Quantitative data from C2 usage reports were analyzed using descriptive statistics. Results Thirty-four parents and 90 care team members, including HCPs, family, and patient information coordinators were registered on the platform. 4027 messages were exchanged on C2. On average, parents sent 33.4 messages and received 66.4 messages on C2. Of all messages on C2, 32.6% were related to comments, questions, and concerns about the platform itself and its features. Figure 1 demonstrates the thematic content of messages related to care, and highlights the differences in messaging content between the 3 forms of communication. Email and phone content focused primarily on clinical care whereas C2 messaging content also emphasized other aspects of care including education, provision of resources, and personal support. Conclusion This study demonstrates the role that a secure messaging system can have for parents of CMC in being active members of their child’s care. Phone and email were mostly used to discuss medications or clinical issues, whereas C2 enabled the discussion of the patient as a whole. The use of secure messaging can therefore complement other forms of communication between providers and families, instead of replacing them. Further research is needed to understand clinical outcomes associated with the use of secure messaging in order to understand its role in improving patient care and overall caregiver and provider experience.

120 The Experience of Housing Need Amongst Families Caring for Children with Medical Complexity: A Qualitative Study

2021 ◽  
Vol 26 (Supplement_1) ◽  
pp. e85-e88
Author(s):  
Clara Moore ◽  
Kara Grace Hounsell ◽  
Arielle Zahavi ◽  
Danielle Arje ◽  
Natalie Weiser ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Future Research ◽  
Complex Care ◽  
Housing Situation ◽  
Children With Medical Complexity ◽  
Trade Off ◽  
Housing Preferences ◽  
Medical Needs ◽  
Medical Complexity ◽  
The Impact

Abstract Primary Subject area Complex Care Background Caregivers of children with medical complexity (CMC) face many financial, social and emotional stressors related to their child’s medical condition(s). Previous research has demonstrated that financial stress among this population can have an impact on their housing situation. Families of CMC may face other unique housing challenges such as disability accommodations in the home and housing space and layout. Objectives The primary aim of this study was to explore families’ perspectives and experiences of housing need, and its relationship to their child’s health status as it pertains to CMC. Design/Methods We conducted a qualitative study using semi-structured interviews to identify themes surrounding families of CMC’s experiences of housing need. Parents of CMC were recruited through purposive sampling from the Complex Care Program at a tertiary pediatric health sciences centre. Recruitment ceased when thematic saturation was reached, as determined by consensus of the research team. Interviews were recorded, transcribed verbatim, coded, and analyzed using thematic analysis. Results Twenty parents completed the interview, of whom 89% were mothers and 42% identified a non-English language as their first language. Two major themes and five subthemes (in parentheses) were identified: 1) the impact of health on housing (housing preferences, housing possibilities, housing outcome as a trade-off) and 2) the impact of housing on health (health of the caregiver, health of the child). Some parents reported that their child’s medical needs resulted in specific preferences regarding the location and layout of their home. Parents also indicated that their caregiving role often affected their income and home ownership status, which in turn, affected their housing possibilities. Thus, the housing situation (location and layout of the home) was often the result of a trade-off between the parent’s housing preferences and possibilities. Conclusion Housing is a recognized social determinant of health. We found that among CMC, health also appears to be a significant determinant of housing as families reported that the health of their child impacted their housing preferences and the options available to them (possibilities). To support the health of CMC and their families, policies targeting improved access to subsidized housing, improved sources of funding and regulations allowing families who rent to make accessibility changes are vital. Future research should investigate the impact of household income on housing need and identify interventions to support appropriate housing for CMC.

scholarly journals Feasibility of implementing systematic social needs assessment for children with medical complexity

2021 ◽  
Vol 2 (1) ◽  
Author(s):  
David Y. Ming ◽  
Kelley A. Jones ◽  
Elizabeth Sainz ◽  
Heidie Tkach ◽  
Amy Stewart ◽  
...  
Keyword(s):  
Decision Making ◽  
Needs Assessment ◽  
Shared Decision Making ◽  
Tertiary Care ◽  
Social Needs ◽  
Complex Care ◽  
Shared Decision ◽  
Children With Medical Complexity ◽  
Implementation Outcomes ◽  
Medical Complexity

Abstract Background Children with medical complexity (CMC) have inter-related health and social needs; however, interventions to identify and respond to social needs have not been adapted for CMC. The objective of this study was to evaluate the feasibility of implementing social needs screening and assessment within pediatric complex care programs. Methods We implemented systematic social needs assessment for CMC (SSNAC) at two tertiary care centers in three phases: (1) pre-implementation, (2) implementation, and (3) implementation monitoring. We utilized a multifaceted implementation package consisting of discrete implementation strategies within each phase. In phase 1, we adapted questions from evidence-informed screening tools into a 21-item SSNAC questionnaire, and we used published frameworks to inform implementation readiness and process. In phases 2–3, clinical staff deployed the SSNAC questionnaire to parents of CMC in-person or by phone as part of usual care and adapted to local clinical workflows. Staff used shared decision-making with parents and addressed identified needs by providing information about available resources, offering direct assistance, and making referrals to community agencies. Implementation outcomes included fidelity, feasibility, acceptability, and appropriateness. Results Observations from clinical staff characterized fidelity to use of the SSNAC questionnaire, assessment template, and shared decision-making for follow-up on unmet social needs. Levels of agreement (5-point Likert scale; 1 = completely disagree; 5 = completely agree) rated by staff for key implementation outcomes were moderate to high for acceptability (mean = 4.7; range = 3–5), feasibility (mean = 4.2; range = 3–5), and appropriateness (mean = 4.6; range = 4-5). 49 SSNAC questionnaires were completed with a 91% response rate. Among participating parents, 37 (76%) reported ≥ 1 social need, including food/nutrition benefits (41%), housing (18%), and caregiver needs (29%). Staff responses included information provision (41%), direct assistance (30%), and agency referral (30%). Conclusions It was feasible for tertiary care center-based pediatric complex care programs to implement a standardized social needs assessment for CMC to identify and address parent-reported unmet social needs.

Mobile Complex Care Plans to Enhance Parental Engagement for Children With Medical Complexity

2018 ◽  
Vol 58 (1) ◽  
pp. 34-41 ◽  
Author(s):  
David Y. Ming ◽  
George L. Jackson ◽  
Jessica Sperling ◽  
Megan Gray ◽  
Noelle Wyman Roth ◽  
...  
Keyword(s):  
Care Program ◽  
Parental Engagement ◽  
Complex Care ◽  
Communication Tool ◽  
Children With Medical Complexity ◽  
Care Plans ◽  
Online Portal ◽  
Health Innovations ◽  
Medical Complexity ◽  
Mobile Complex

Care plans can reduce care fragmentation for children with medical complexity (CMC); however, implementation is challenging. Mobile health innovations could improve implementation. This mixed methods study’s objectives were to (1) evaluate feasibility of mobile complex care plans (MCCPs) for CMC enrolled in a complex care program and (2) study MCCPs’ impact on parent engagement, parent experience, and care coordination. MCCPs were individualized, updated quarterly, integrated within the electronic health record, and visible on parents’ mobile devices via an online portal. In 1 year (September 1, 2016, to August 31, 2017), 94% of eligible patients (n = 47) received 162 MCCPs. Seventy-four percent of parents (n = 35) reviewed MCCPs online. Forty-six percent of these parents (n = 16) sent a follow-up message, and the care team responded within 8 hours (median time = 7.2 hours). In interviews, parents identified MCCPs as an important reference and communication tool. MCCPs for CMC in a complex care program were feasible, facilitated parental engagement, and delivered timely communication.

scholarly journals The parental experience and perceptions of blenderized tube feeding for children with medical complexity

2021 ◽  
Author(s):  
Joanna Soscia ◽  
Sherri Adams ◽  
Eyal Cohen ◽  
Clara Moore ◽  
Jeremy N Friedman ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Tertiary Care ◽  
Tube Feeding ◽  
Structured Interviews ◽  
Children With Medical Complexity ◽  
Entire Family ◽  
Parental Experience ◽  
Enteral Tube Feeding ◽  
Medical Complexity ◽  
Psychosocial Implications

Abstract Objectives Parents of children with medical complexity are often expected to implement complicated plans of care, such as enteral tube feeding, to support the health of their child. Enteral feeding can have psychosocial implications for the parent, child, and family. Blenderized tube feeding (BTF) refers to the administration of pureed food and drinks through a feeding tube. Little is known regarding parents’ experiences with BTF. Therefore, the purpose of this qualitative study was to understand the lived experience of BTF from the parent’s perspective. Methods This qualitative study was a grounded theory analysis utilizing semi-structured interviews of parents who provided at least 50% of their child’s diet through BTF. Participants were recruited using purposive sampling from the Complex Care Program at a tertiary care paediatric centre. Interviews were conducted until thematic saturation was achieved. Themes were identified using constant comparative analysis of transcribed interviews. Results Parents (n=10) felt that BTF positively affected the experience of tube feeding and enhanced their child’s health and wellbeing. Parents described BTF as a means of self-empowerment and a mechanism to normalize feeding and care for the entire family. Despite reporting BTF as more time consuming than formula feeding, all parents were satisfied with having made the change, and planned on continuing the diet. Conclusion BTFs can improve the experience of tube feeding and positively address some of the negative psychosocial implications of enteral tube feeding, providing a sense of normalcy and control for parents caring for a child with medical complexity.

scholarly journals Telemedicine Video Visits for Children with Medical Complexity in a Structured Clinical Complex Care Program

2020 ◽  
Vol 7 ◽  
pp. 2333794X2095219
Author(s):  
Melissa H. Ross ◽  
Lisa S. Parnell ◽  
Tracy G. Spears ◽  
David Y. Ming
Keyword(s):  
Care Program ◽  
Complex Care ◽  
Children With Medical Complexity ◽  
Medical Complexity

scholarly journals Integrated complex care coordination for children with medical complexity: A mixed-methods evaluation of tertiary care-community collaboration

2021 ◽  
Author(s):  
Eyal Cohen ◽  
Ashley Lacombe-Duncan ◽  
Karen Spalding ◽  
Jennifer MacInnis ◽  
David Nicholas ◽  
...  
Keyword(s):  
Primary Care ◽  
Health Care ◽  
Care Coordination ◽  
Care Center ◽  
Tertiary Care ◽  
Care Utilization ◽  
Complex Care ◽  
Tertiary Care Center ◽  
Community Based ◽  
Children With Medical Complexity

Background Primary care medical homes may improve health outcomes for children with special healthcare needs (CSHCN), by improving care coordination. However, community-based primary care practices may be challenged to deliver comprehensive care coordination to complex subsets of CSHCN such as children with medical complexity (CMC). Linking a tertiary care center with the community may achieve cost effective and high quality care for CMC. The objective of this study was to evaluate the outcomes of community-based complex care clinics integrated with a tertiary care center. Methods A before- and after-intervention study design with mixed (quantitative/qualitative) methods was utilized. Clinics at two community hospitals distant from tertiary care were staffed by local community pediatricians with the tertiary care center nurse practitioner and linked with primary care providers. Eighty-one children with underlying chronic conditions, fragility, requirement for high intensity care and/or technology assistance, and involvement of multiple providers participated. Main outcome measures included health care utilization and expenditures, parent reports of parent- and child-quality of life [QOL (SF-36®, CPCHILD©, PedsQL™)], and family-centered care (MPOC-20®). Comparisons were made in equal (up to 1 year) pre- and post-periods supplemented by qualitative perspectives of families and pediatricians. Results Total health care system costs decreased from median (IQR) $244 (981) per patient per month (PPPM) pre-enrolment to $131 (355) PPPM post-enrolment (p=.007), driven primarily by fewer inpatient days in the tertiary care center (p=.006). Parents reported decreased out of pocket expenses (p<.0001). Parental QOL did not significantly change over the course of the study. Child QOL improved between baseline and 6 months in two PedsQL™ domains [Social (p=.01); Emotional (p=.003)], and between baseline and 1 year in two CPCHILD© domains [Health Standardization Section (p=.04); Comfort and Emotions (p=.03)], while total CPCHILD© score decreased between baseline and 1 year (p=.003). Parents and providers reported the ability to receive care close to home as a key benefit. Conclusions Complex care can be provided in community-based settings with less direct tertiary care involvement through an integrated clinic. Improvements in health care utilization and family-centeredness of care can be achieved despite minimal changes in parental perceptions of child health.

scholarly journals Complex care for kids Ontario: protocol for a mixed-methods randomised controlled trial of a population-level care coordination initiative for children with medical complexity

BMJ Open ◽  
2019 ◽  
Vol 9 (8) ◽  
pp. e028121 ◽  
Author(s):  
Julia Orkin ◽  
Carol Y Chan ◽  
Nora Fayed ◽  
Jia Lu Lilian Lin ◽  
Nathalie Major ◽  
...  
Keyword(s):  
Randomised Controlled Trial ◽  
Controlled Trial ◽  
Population Level ◽  
Complex Care ◽  
Coordinated Care ◽  
Children With Medical Complexity ◽  
Medical Needs ◽  
Care Plans ◽  
Medical Complexity ◽  
Randomised Controlled

IntroductionTechnological and medical advances have led to a growing population of children with medical complexity (CMC) defined by substantial medical needs, healthcare utilisation and morbidity. These children are at a high risk of missed, fragmented and/or inappropriate care, and families bear extraordinary financial burden and stress. While small in number (<1% of children), this group uses ~1/3 of all child healthcare resources, and need coordinated care to optimise their health. Complex care for kids Ontario (CCKO) brings researchers, families and healthcare providers together to develop, implement and evaluate a population-level roll-out of care for CMC in Ontario, Canada through a randomised controlled trial (RCT) design. The intervention includes dedicated key workers and the utilisation of coordinated shared care plans.Methods and analysisOur primary objective is to evaluate the CCKO intervention using a randomised waitlist control design. The waitlist approach involves rolling out an intervention over time, whereby all participants are randomised into two groups (A and B) to receive the intervention at different time points determined at random. Baseline measurements are collected at month 0, and groups A and B are compared at months 6 and 12. The primary outcome is the family-prioritized Family Experiences with Coordination of Care (FECC) survey at 12 months. The FECC will be compared between groups using an analysis of covariance with the corresponding baseline score as the covariate. Secondary outcomes include reports of child and parent health outcomes, health system utilisation and process outcomes.Ethics and disseminationResearch ethics approval has been obtained for this multicentre RCT. This trial will assess the effect of a large population-level complex care intervention to determine whether dedicated key workers and coordinated care plans have an impact on improving service delivery and quality of life for CMC and their families.Trial registration numberNCT02928757.

scholarly journals ARE CHILDREN WITH MEDICAL COMPLEXITY (CMC) MEETING TRANSITION-RELATED MILESTONES BEFORE ENTERING THE ADULT HEALTHCARE SYSTEM? A CROSS-SECTIONAL CHART REVIEW

2018 ◽  
Vol 23 (suppl_1) ◽  
pp. e31-e31
Author(s):  
Taylor McKay ◽  
Christopher Chung ◽  
Julia Orkin ◽  
Sherri Adams
Keyword(s):  
Healthcare System ◽  
Chart Review ◽  
Complex Care ◽  
Critical Transition ◽  
Children With Medical Complexity ◽  
Cross Sectional ◽  
Key Informants ◽  
Related Data ◽  
Care Plans ◽  
Medical Complexity

Abstract BACKGROUND Medical and technological advances have resulted in a growing cohort of children with medical complexity (CMC) who are reaching adulthood. These children are diagnostically heterogenous and require frequent hospitalizations, intensive community services, and medical technology at home to maintain their health. Transitioning CMC to the adult healthcare system has proven challenging for patients and their caregivers, who are comfortable and empowered in the paediatric setting. This multi-faceted process requires the expertise of an interdisciplinary team and one transition can take up to 100 hours of coordination. Although each patient is diagnostically unique, common requirements for transition arise. A standardized approach to transition would empower caregivers to be better advocates for CMC in the adult healthcare system. In order to implement an approach, a baseline understanding of this growing population is required. OBJECTIVES 1. To obtain demographic, medical, and transition-related data for CMC approaching transition to assess whether current transition practices are aligned with critical transition milestones and events, as detailed by key informants 2. To identify optimal targets for intervention in the transition process and produce a standardized toolkit to address gaps DESIGN/METHODS This was a cross-sectional chart review study. It was conducted at one of the largest Canadian complex care programs, which follows 400+ children. Prior to chart review, critical transition-related parameters and milestones were ascertained from interviews with key informants, such as transition coordination experts, the medical lead of the complex care program, family physicians, social workers, and nurse practitioners, who are the most involved with transitioning patients clinically. This previously siloed knowledge was centralized and converted into a standardized clinical toolkit including an age-stratified checklist and caregiver handouts. Having determined key transition parameters, 51 CMC were identified between the ages of 14 and 17 (inclusive) and were included in the study. Demographic, medical, and transition-related data was collected from care plans and clinical notes. Data was subsequently stratified by age and care location. Descriptive statistics were generated for each key transition parameter. RESULTS This cohort of 51 CMC (51% male, 49% female) displayed steady growth between years. On average, these CMC had 9 diagnoses, 6 subspecialists, actively used 8 medications, and were dependent on one home-technology. Only 50% of patients had discussed transition-related topics and 76% of patients did not have a designated transition lead. Although discussion of transition increased with age, many crucial transition-related topics, both in medical and social categories, were not routinely addressed. From a medical perspective, over 40% of patients had not found a family physician, who serve as the primary medical care coordinators in the adult healthcare system. In the final year before transition, less than 50% of patients had been referred to new adult subspecialists and of these patients, half had not met these new providers. Adult social support programs, which provide critical funding for medications, respite, and home care, represent the other major component of transition. At age 17, 50% of patients had not applied for any provincial disability and respite funding, which can take up to 2 years to receive approval for. CONCLUSION This study has identified areas for improvement in medical and social aspects of transition-related planning that may benefit from a standardized clinical toolkit. These are highly complex patients who are not meeting transition-related milestones before turning 18, and are entering the adult healthcare system unprepared. Without approved funding and established medical follow-up, patients and caregivers suffer. Due to the highly heterogenous nature of this patient population, a standardized approach to transition, in tandem with further research and education, is needed.

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