Parents Of Children With Medical Complexity Research Articles

Parents' Trigger Tool for Children with Medical Complexity - PAT-CMC: Development of a recognition tool for clinical deterioration at home.

To develop a trigger tool for parents and lay caregivers of children with medical complexity (CMC) at home and to validate its content. This was a multi-method study, using qualitative data, a Delphi method and a concept mapping approach. A three-round electronic Delphi was performed from December 2021 to April 2022 with a panel of 23 expert parents and 30 healthcare providers, supplemented by a preliminary qualitative exploration of children's signs of deterioration and three consensus meetings to develop the PArents' Trigger Tool for Children with Medical Complexity (PAT-CMC). Cognitive interviews with parents were performed to assess the comprehensiveness and comprehensibility of the tool. The COREQ checklist, the COSMIN guidelines and the CREDES guidelines guided the reporting respectively of the qualitative study, the development and content validity of the trigger tool and the Delphi study. The PAT-CMC was developed and its content validated to recognize clinical deterioration at home. The tool consists of 7 main clusters of items: Breathing, Heart, Devices, Behaviour, Neuro-Muscular, Nutrition/Hydration and Other Concerns. A total of 23 triggers of deterioration were included and related to two recommendations for escalation of care, using a traffic light coding system. Priority indicators of clinical deterioration of CMC were identified and integrated into a validated trigger tool designed for parents or other lay caregivers at home, to recognize signs of acute severe illness and initiate healthcare interventions. The PAT-CMC was developed to guide families in recognizing signs of deterioration in CMC and has potential for initiating an early escalation of care. This tool may also be useful to support education provided by healthcare providers to families before hospital discharge. Parents of CMC were directly involved in the selection of relevant indicators of children's clinical deterioration and the development of the trigger tool. They were not involved in the design, conducting, reporting or dissemination plans of this research.

Impact of disability-based discrimination in healthcare on parents of children with medical complexity.

To qualitatively assess the impact of disability-based discrimination in healthcare on the parents of children with medical complexity (CMC). In this qualitative study, we conducted in-depth, semi-structured interviews with the parents of CMC. Data collection and analysis occurred iteratively; constant comparison methods were used to identify themes describing the impact of disability-based discrimination in pediatric healthcare on the parents of CMC. Thirty participants from 15 US states were interviewed. Four themes were developed regarding the impact of disability-based discrimination in healthcare on parents. The themes were: (1) discrimination leads to a loss of trust in healthcare providers; (2) discrimination increases the burden of caregiving; (3) discrimination impacts parental well-being; and (4) racism and poverty-based discrimination amplifies disability-based discrimination. The experience of discrimination toward their child results in loss of trust and therapeutic relationship between provider and parent, causes increased burden to the family, and contributes to decreased parental well-being. These experiences are magnified in minoritized families and in families perceived to have a lower socioeconomic status based on insurance type.

Emotional impacts of excursions on parents of children with medical complexity

AbstractBackgroundParents of children with medical complexity (CMC) have extra child‐raising responsibilities because of the time commitments necessary for care, and their social participation is often compromised. Experiencing leisure excursions with such children may be a solution to some of these problems but the first‐hand experience of excursions in regard to their psychological impact on the caregivers of CMC remains to be appraised.MethodsSemi‐structured interviews were conducted, via video conference, with eight informal and eight formal caregivers of CMC who attended an excursion to Tokyo Disney Land (TDL). We investigated the psychological changes that they had experienced through the excursion, performing inductive thematic analysis.ResultsThree themes were identified among parents and five were identified among medical professionals. Themes reported by the parents were: Increased trust in the public and society (Theme 1); confidence for other challenges (Theme 2), and connection with other parents in the non‐medical settings (Theme 3). Themes reported by medical professionals were: Expanding the initiative to other CMC (Theme 1); feeling bonded with other caregivers within the working group (Theme 2); information exchange across different working groups (Theme 3), positive responses from CMC (Theme 4); families' confidence to go out (Theme 5).ConclusionsThis study showed that the excursion to TDL led to positive psychological changes in both medical professionals and parents of CMC, enhancing trust, connection, and confidence. The promising results of this study suggest a need for further research about the impact of an excursion on caregivers of CMC.

Understanding the types of social support that can mitigate parental burnout in mothers of children with medical complexity.

Parental burnout is characterized by exhaustion, emotional distancing and a sense of ineffectiveness in the parenting role. Parents of children with medical complexity (CMC) face various challenges due to their child's diagnosis. Specifically, mothers of CMC experience more parental burnout symptoms than mothers of children without healthcare needs. Multiple studies have identified interventions for mitigating caregiver stress in parents of CMC. However, social support is of interest to organizations that provide services geared towards the family unit's social-emotional wellbeing. This article aims to explore the role of social support in mitigating parental burnout in mothers of CMC. It also aims to offer guidance to community-based organizations, practitioners, and mental health advocates on how to best allocate resources to provide social support opportunities for mothers of CMC. A qualitative case study approach was utilized to explore the role of social support in mitigating parental burnout in mothers of CMC. A sample of five mothers of CMC participated in an interview regarding the role of social support in mitigating parental burnout. Within-case analysis was used to identify overarching themes, followed by cross-case analysis to determine similarities among participants' experience. Three salient themes emerged from the participants' interviews: isolation, types of social support, and the benefits of helping others. Types of social support included four subcategories: church support, practical support, mental health support and respite/childcare support. Results of the study indicated that active engagement in specific types of social support was critical in mitigating parental burnout and feelings of isolation in mothers of CMC. Furthermore, results revealed that mothers of CMC experience positive benefits from helping others. These findings encourage community-based organizations to focus on maximizing partnerships with churches and other non-profit organizations to develop strategic programmes for mitigating parental burnout in mothers of CMC.

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

Abstract 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 which enables parents to communicate with their child’s care team members (CTMs) in a timely manner. Objectives (1) Evaluate the use of a secure messaging system, (2) Examine and compare the content of messages to email and phone calls, and (3) Explore parent and CTMs’ perceptions and experience using secure messaging as a method of communication. Design/Methods This study is a sub-study of a larger feasibility evaluation of the C2 platform. Parents of CMC were recruited from a tertiary level complex care program to use the C2 platform for 6 months. Parents could invite CTMs involved in their child’s care to register on the platform. Secure messages were extracted from C2 usage reports, and phone and email documentation from the electronic medical record. Quantitative data from C2 usage reports were analyzed using descriptive statistics. Messaging content codes were iteratively developed through review of the C2 messages. Semi-structured interviews were completed with parents and CTMs. Communication and interview data were analyzed using thematic analysis. Results 36 parents and 43 care team members, including HCPs and family members, registered on the C2 platform. Participants sent a total of 1853 messages on C2 with parents and nurse practitioners sending a mean of 33.1 and 87.4 messages, respectively. 85.5% of all C2 messages were responded to within 24 hours. Email and phone calls focused primarily on clinical concerns and medications, whereas C2 messaging focused more on education, proactive check-ins, and non-medical aspects of the child’s life (Figure 1). Four themes emerged from the participant interviews related to C2 messaging: Connection to Care Team, Efficient Communication, Clinical Uses of Secure Messaging, and Barriers to Use (Figure 2). Conclusion Overall, our study provides valuable insight into the benefits of secure messaging in the care of CMC. Secure messaging provided the opportunity for continued patient education, proactive check-ins from HCPs, and casual conversations about family and child life, which contributed to parents feeling an improved sense of connection with their child’s health care team. Secure messaging can be a beneficial additional communication method to improve communication between parents and their care team, reduce the associated burden of care coordination, and ultimately, improve the experience of care delivery.

Experiences of medical traumatic stress in parents of children with medical complexity.

Parents of children with medical complexity (CMC) experience high levels of stress and adverse mental health outcomes. Pediatric medical traumatic stress (PMTS) could be an important contributor that has not yet been explored. PMTS describes parents' reactions to their child's illness and medical treatment and can lead to post-traumatic stress symptoms. This is the first study to describe the experiences and impact of PMTS among parents of CMC. We conducted semi-structured interviews with 22 parents of CMC. Reflexive thematic analysis was used to generate themes that described the experiences of PMTS and potential contributing factors in the healthcare setting. Themes were validated by study participants. Parents experienced a spectrum of events and circumstances that impacted PMTS. These corresponded to three major themes: (a) the distinctive context of being the parent of a CMC, (b) interactions with healthcare providers that can hurt or heal and (c) system factors that set the stage for trauma. The consequences of repeated PMTS were a common point of emphasis among all the themes. Parents identified numerous changes that could mitigate PMTS such as acknowledgement of trauma and provision of proactive mental health support. Our study highlights the issue of PMTS among parents of CMC and presents opportunities to mitigate their traumatic experiences. Supporting the integration of trauma-informed care practices, increasing awareness of PMTS and advocating for parental mental health services could better support parents and families.

Care maps: De-medicalizing children with medical complexity.

Children with medical complexity (CMC) have extremely high health care needs. Given their chronic complex diagnoses and involvement of multiple care providers, they are often over medicalized and seen as a list of diagnoses rather than as a child. Parents of CMC are extraordinary caregivers and advocates for their children. Parental values and perspectives are critical drivers of medical decision making, therefore highlighting the importance of collaboration between all members of the medical team. For health care providers (HCPs) to holistically guide and support families, an all encompassing, big picture understanding of CMC and their family is needed, and care maps are one such vehicle to provide this insight. Care maps are a parent-created tool that can be used to provide a holistic view of the child and demonstrate the complexity of life and interrelatedness of services for CMC. Previous research has shown that care maps have been used as a resource to promote parental reflection and identify parental priorities of care. Promotion of care maps by HCPs as a valuable tool in understanding the child and family's goals may help improve holistic understanding and promote collaborative care.

Decision-making for Parents of Children With Medical Complexities: Activity Theory Analysis.

BackgroundShared decision-making (SDM), a collaborative approach to reach decisional agreement, has been advocated as an ideal model of decision-making in the medical encounter. Frameworks for SDM have been developed largely from the clinical context of a competent adult patient facing a single medical problem, presented with multiple treatment options informed by a solid base of evidence. It is difficult to apply this model to the pediatric setting and children with medical complexity (CMC), specifically since parents of CMC often face a myriad of interconnected decisions with minimal evidence available on the multiple complex and co-existing chronic conditions. Thus, solutions that are developed based on the traditional model of SDM may not improve SDM practices for CMCs and may be a factor contributing to the low rate of SDM practiced with CMCs.ObjectiveThe goal of our study was to address the gaps in the current approach to SDM for CMC by better understanding the decision-making activity among parents of CMCs and exploring what comprises their decision-making activity.MethodsWe interviewed 12 participants using semistructured interviews based on activity theory. Participants identified as either a parent of a CMC or a CMC over the age of 18 years. Qualitative framework analysis and an activity theory framework were employed to understand the complexity of the decision-making process in context.ResultsParents of CMCs in our study made decisions based on a mental model of their child’s illness, informed by the activities of problem-solving, seeking understanding, obtaining tests and treatment, and caregiving. These findings suggest that the basis for parental choice and values, which are used in the decision-making activity, was developed by including activities that build concrete understanding and capture evidence to support their decisions.ConclusionsOur interviews with parents of CMCs suggest that we can address both the aims of each individual activity and the related outcomes (both intended and unintended) by viewing the decision-making activity as a combination of caregiving, problem-solving, and seeking activities. Clinicians could consider using this lens to focus decision-making discussions on integrating the child’s unique situation, the insights parents gain through their decision-making activity, and their clinical knowledge to enhance the understanding between parents and health care providers, beyond the narrow concept of parental values.

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

Primary Subject areaComplex CareBackgroundThe 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.ObjectivesWe explored parental experience of CMC during the COVID-19 pandemic, and how the complex care program (CCP) answers their new needs.Design/MethodsThis 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.ResultsEleven 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.ConclusionThe 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.

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

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.

98 Parental perspective on changes in health care following integration to a complex care program

Abstract Primary Subject area Complex Care Background Quantitative studies have found that integration into a complex care program (CCP) leads to decreased number of visits to the emergency department (ED) and hospitalization days for children with medical complexity (CMC). However, little is known about CMC families’ experiences regarding their healthcare resource utilization patterns following their child’s integration in the CCP. Objectives To analyze parental perspectives regarding changes in healthcare resources utilization following CCP admission. Design/Methods This study was conducted in our tertiary care pediatric university hospital, between December 2019 and January 2021 using individual semi-structured interviews. To assess the effect of CCP admission on healthcare resources utilization, only patients with at least 6 months of chronic disease before inclusion were eligible (32 families). The interview guide was co-constructed by our CCP team of nurses, doctors, social worker and parents of CMC. Participation rate was over one third (12/32) throughout, for which a satisfactory level of data saturation was obtained, as core themes specific to the research question were repeatedly identified. Verbatims were analyzed with NVivo. Descriptive thematic analysis was performed by coding themes emerging from the data. Results Sixteen parents from twelve families were interviewed (11 mothers, 5 fathers, including 4 couples). Most parents had experienced a decrease in ED visits with improvement in their perceived satisfaction regarding the provided healthcare services following CCP admission. Visits to the CCP pediatrician led to appreciated, continuous and tailored care. In comparison, the constant change of pediatricians in the ED and during hospitalization on the ward seemed to complicate their care experience. Also, the support from pivot nurses and social workers for daily health issues, drug prescription and paperwork was perceived as a relief. This directly favorably influenced care experience. Profound knowledge of patients’ health conditions and families’ personal challenges and strengths, led to personalized care and trust that greatly improved parents’ confidence in care and empowered families. Individualized advice by the CCP team leading to prompt treatment and preventive measures started early at home were identified by parents as the main driving forces leading to the observed decrease in ED visits. When hospitalized, confidence in the quality of care provided by parents at home with close follow-up by CCP were identified as the main driving forces leading to the quicker discharge. Conclusion Changes in health care utilization following admission to CCP was associated with an improved care experience. Parents identified individualized care and close follow-ups as key factors leading to decreased health care utilization.

Genome sequencing among children with medical complexity: What constitutes value from parents' perspective?

Genome sequencing (GS) has demonstrated high diagnostic yield in pediatric patients with complex, clinically heterogeneous presentations. Emerging evidence shows generally favorable experiences for patients and families receiving GS. As a result, implementation of GS in pediatrics is gaining momentum. To inform implementation, we conducted a qualitative study to explore the personal utility of GS for parents of children with medical complexity (CMC). GS was performed at an academic tertiary-care center for CMC for whom a genetic etiology was suspected. Following the return of GS results, semi-structured interviews were conducted with 14 parents about their child's diagnostic journey. Of the children whose parents were interviewed, six children received a diagnosis, two received a possible diagnosis, and six did not receive a diagnosis. A predominantly deductive thematic analysis approach to the interview data was used by applying Kohler's personal utility framework to understand affective, cognitive, behavioral and social impacts of GS. Both the diagnosed and undiagnosed groups experienced enhanced emotion-focused coping (affective). The diagnosed group experienced favorable utility related to knowledge of condition (cognitive) and communication with relatives (behavioral). A domain beyond Kohler's framework related to the presence or absence of GS impact on medical management was also described by parents. The deployment of GS late in the diagnostic odyssey and the limited knowledge available for the rare genetic disorders diagnosed in this cohort appeared to diminish the perceived utility of GS. As GS capabilities continue to evolve at a rapid pace and become available earlier in the diagnostic journey, it is important to consider the impact and timing of testing on parents of CMC.

The Experience of Housing Needs Among Families Caring for Children With Medical Complexity.

Caregivers of children with medical complexity (CMC) face many stressors related to their child's medical condition(s). Financial stress and its impact on housing has been reported to be a challenge among this population. However, unique housing challenges specific to CMC, including disability accommodations in the home and housing space and layout, have yet to be examined in the literature. We conducted 20 individual semistructured interviews with parents of CMC. Interviews were recorded, coded, and analyzed by using thematic analysis to emphasize, examine, and record patterns of meaning within the data. Eighteen mothers and 2 fathers participated in individual interviews. Two major themes and subthemes (in parentheses) were identified: (1) the impact of health on housing (housing preferences, housing possibilities, and housing outcome as a trade-off) and (2) the impact of housing on health (health of the caregiver and health of the child). Parents had preferences regarding the location and layout of their home specific to their child's illness and medical needs. In addition, parents indicated their child's illness affected their income and home ownership status, which in turn shaped their housing possibilities. The location and layout of the family home was often the result of a trade-off between the caregiver's housing preferences and possibilities. Housing outcomes among CMC are often the result of a trade-off between housing preferences and possibilities, both of which are influenced by the child's health status. Policy changes targeting housing accessibility and affordability are vital to support the health of CMC.

Home-Monitoring Application for Children With Medical Complexity: A Feasibility Trial.

Mobile apps are suggested for supporting home monitoring and reducing emergency department (ED) visits and hospitalizations for children with medical complexity (CMC). None have been implemented. We sought to assess the MyChildCMC app (1) feasibility for CMC home monitoring, (2) ability to detect early deteriorations before ED and hospital admissions, and (3) preliminary impact. Parents of CMC (aged 1-21 years) admitted to a children's hospital were randomly assigned to MyChildCMC or usual care. MyChildCMC subjects recorded their child's vital signs and symptoms daily for 3 months postdischarge and received real-time feedback. Feasibility measures included parent's enrollment, retention, and engagement. The preliminary impact was determined by using quality of life, parent satisfaction with care, and subsequent ED and hospital admissions and hospital days. A total of 62 parents and CMC were invited to participate: 50 enrolled (80.6% enrollment rate) and were randomly assigned to MyChildCMC (n = 24) or usual care (n = 26). Retention at 1 and 3 months was 80% and 74%, and engagement was 68.3% and 62.6%. Run-chart shifts in vital signs were common findings preceding admissions. The satisfaction score was 26.9 in the MyChildCMC group and 24.1 in the control group (P = .035). No quality of life or subsequent admission differences occurred between groups. The 3-month hospital days (pre-post enrollment) decreased from 9.25 to 4.54 days (rate ratio = 0.49; 95% confidence interval = 0.39-0.62; P < .001) in the MyChildCMC group and increased from 1.08 to 2.46 days (rate ratio = 2.29; 95% confidence interval = 1.47-3.56; P < .001) in the control group. MyChildCMC was feasible and appears effective, with the potential to detect early deteriorations in health for timely interventions that might avoid ED and hospitalizations. A larger and definitive study of MyChildCMC's impact and sustainability is needed.

Parent Perceptions and Experiences Regarding Medication Education at Time of Hospital Discharge for Children With Medical Complexity.

Children with medical complexity (CMC) often require complex medication regimens. Medication education on hospital discharge should provide a critical safety check before medication management transitions from hospital to family. Current discharge processes may not meet the needs of CMC and their families. The objective of this study is to describe parent perspectives and priorities regarding discharge medication education for CMC. We performed a qualitative, focus-group-based study, using ethnography. Parents of hospitalized CMC were recruited to participate in 1 of 4 focus groups; 2 were in Spanish. Focus groups were recorded, transcribed, and then coded and organized into themes by using thematic analysis. Twenty-four parents participated in focus groups, including 12 native English speakers and 12 native Spanish speakers. Parents reported a range of 0 to 18 medications taken by their children (median 4). Multiple themes emerged regarding parental ideals for discharge medication education: (1) information quality, including desire for complete, consistent information, in preferred language; (2) information delivery, including education timing, and delivery by experts; (3) personalization of information, including accounting for literacy of parents and level of information desired; and (4) self-efficacy, or education resulting in parents' confidence to conduct medical plans at home. Parents of CMC have a range of needs and preferences regarding discharge medication education. They share a desire for high-quality education provided by experts, enabling them to leave the hospital confident in their ability to care for their children once home. These perspectives could inform initiatives to improve discharge medication education for all patients, including CMC.

Toward an Understanding of Advance Care Planning in Children With Medical Complexity.

Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP) conversations need to be uniquely tailored to this population. Our primary objective for this study was to develop an in-depth understanding of the ACP experiences from the perspectives of both parents and health care providers (HCPs) of CMC. We conducted 25 semistructured interviews with parents of CMC and HCPs of various disciplines from a tertiary pediatric hospital. Interview guide questions were focused on ACP, including understanding of the definition, positive and negative experiences, and suggestions for improvement. Interviews were conducted until thematic saturation was reached. Interviews were audio recorded, transcribed verbatim, coded, and analyzed using content analysis. Fourteen mothers and 11 HCPs participated in individual interviews. Interviews revealed 4 major themes and several associated subthemes (in parentheses): (1) holistic mind-set, (2) discussion content (beliefs and values, hopes and goals, and quality of life), (3) communication enhancers (partnerships in shared decision-making, supportive setting, early and ongoing conversations, consistent language and practice, family readiness, provider expertise in ACP discussions, and provider comfort in ACP discussions), and (4) the ACP definition. Family and HCP perspectives revealed a need for family-centered ACP for CMC and their families. Our results aided the development of a family-centered framework to enhance the delivery of ACP through a holistic mind-set, thoughtful discussion content, and promoting of conversation enhancers.

Care maps and care plans for children with medical complexity.

The support of families in the care of children with medical complexity (CMC) requires the integration of health care providers' (HCPs') medical knowledge and family experience. Care plans largely represent HCP information, and care maps demonstrate the family experience. Understanding the intersection between a care plan and a care map is critical, as it may provide solutions to the widely recognized tension between HCP-directed care and patient- and family-centered care (PFCC). This study used qualitative methods to explore the experience and usefulness of care maps. Parents of CMC who already had a care plan, created care maps (n=15). Subsequent interviews with parents (n=15) and HCPs (n=30) of CMC regarding both care maps and care plans were conducted and analyzed using thematic analysis. Data analysis exploring the relationship and utility of care plans and care maps revealed six primary themes related to using care plans and care maps that were grouped into two primary categories: (a) utility of care plans and maps; and (b) intersection of care plans and care maps. Care plans and care maps were identified as valuable complementary documents. Their integration offers context about family experience and respects the parents' experiential wisdom in a standard patient care document, thus promoting improved understanding and integration of the family experience into care decision making.

Establishing Paediatric Integrated Care for Children with Medical Complexity in a Fragmented Health System

Background: The Sydney Children’s Hospitals Network (SCHN) Kids Guided Personalised Services (GPS) Integrated Care Initiative supports families who are caring for children with medical complexity (CMC). These children have substantial health needs that require highly specialised care, often from multiple providers over their childhood and during transition to adulthood1,2. SCHN has worked with partner local health districts (LHD), primary health networks (PHN) and consumer support organisations to develop and test models of integrated care that support these children and their families to navigate the health system. In parallel, the Kids GPS Care Coordination Service was established and embedded within the network’s Ambulatory Services. The Care Coordinators have developed comprehensive care plans with the families of 450 children with medical complexity, working across specialty teams, local health services and primary care. Since 2015 they have saved families over 50,000 kilometres in travel and 370 days of school absence, that would previously have been incurred to access care. In this financial year alone, more than 550 hospital encounters have been avoided for these children. The Paediatric Integrated Care Survey3 from Boston Children’s Hospital was used to assess the impact on the families and children involved. The workshop will cover: Working in partnership across organisational boundaries Establishing the baseline – a mixed methods approach Building enabling technology The evolution of care coordination Using Quality Improvement methodology to overcome resistance to change Scale and spread of proven models Measuring outcomes Aims and Objectives: Avoid unnecessary hospital admissions, ED presentations and length of stay Improve the coordination of care to streamline care and optimise the use of clinical resources Improve the experience and capacity building of families Optimise appropriate resources across all realms to ensure efficiencies of care (Right time, right place, right care, right team) Enhance existing services and develop evidence-based models Format (timing, speakers, discussion, group work, etc) In a 90 minute session, speakers will include the Integrated Care Program and Clinical Leads, and the Network Nurse Manager and Medical Lead for Ambulatory Services. The audience will be asked a series of questions to work through in small groups at intervals during the workshop: How can consultation during formative evaluation be translated into research? How can we replicate and build on existing models of Care Coordination, instead of designing and implementing in silos? What can paediatric integrated care interventions learn from successful integrated care models in the adult space? Target audience: Clinicians and program managers implementing/evaluating integrated care interventions Learnings/Take away: Successful integration needs multidisciplinary integration across the whole health system, with deep engagement of families and stakeholders, an equitable reach and evidence based standardised care4. Of fundamental importance for SCHN has been widely inclusive consultation and engagement with health care providers, parents of CMC and other key stakeholders at every opportunity. The comprehensive system change required for this Initiative’s success was implemented through the establishment of meaningful, respectful and trusting partnerships that include the SCHN and LHDs, PHNs, General Practitioners, consumer groups and families of CMC.

Exploring the usefulness of comprehensive care plans for children with medical complexity (CMC): a qualitative study.

BackgroundThe Medical Home model recommends that Children with Special Health Care Needs (CSHCN) receive a medical care plan, outlining the child’s major medical issues and care needs to assist with care coordination. While care plans are a primary component of effective care coordination, the creation and maintenance of care plans is time, labor, and cost intensive, and the desired content of the care plan has not been studied. The purpose of this qualitative study was to understand the usefulness and desired content of comprehensive care plans by exploring the perceptions of parents and health care providers (HCPs) of children with medical complexity (CMC).MethodsThis qualitative study utilized in-depth semi-structured interviews and focus groups. HCPs (n = 15) and parents (n = 15) of CMC who had all used a comprehensive care plan were recruited from a tertiary pediatric academic health sciences center. Themes were identified through grounded theory analysis of interview and focus group data.ResultsA multi-dimensional model of perceived care plan usefulness emerged. The model highlights three integral aspects of the care plan: care plan characteristics, activating factors and perceived outcomes of using a care plan. Care plans were perceived as a useful tool that centralized and focused the care of the child. Care plans were reported to flatten the hierarchical relationship between HCPs and parents, resulting in enhanced reciprocal information exchange and strengthened relationships. Participants expressed that a standardized template that is family-centered and includes content relevant to both the medical and social needs of the child is beneficial when integrated into overall care planning and delivery for CMC.ConclusionsCare plans are perceived to be a useful tool to both health care providers and parents of CMC. These findings inform the utility and development of a comprehensive care plan template as well as a model of how and when to best utilize care plans within family-centered models of care.