Background Increasing numbers of children with complex health-care needs are cared for at home by their family. The aim of this qualitative study was to explore the challenges experienced by families caring for children who need complex medical care at home. Methods We conducted a thematic analysis of eleven in-depth interviews with parents who carry out specialist medical procedures (eg, enteral feeding, bowel washouts and tracheostomy care) for their children at home. Participants were purposely selected from an existing sample of interviews with parents whose child had abdominal surgery in the first year of life. Results We identified three overarching themes: (a) responsibilities of the parent, (b) impact on daily life and (c) the parent journey over time. Parents have substantial responsibilities, including performing medical procedures, managing emergencies (sometimes life-threatening), co-ordinating care and advocating for their child. Their responsibilities have an enormous impact on the family: going out of the home becomes a challenge, there are constant constraints on time, parents are sleep-deprived and there are wider impacts on siblings. The third theme explores the parent journey over time as parents become experts and make sense of the new normal. Discussion The burden of care on families caring for children with complex medical needs is much greater than is generally understood by either multidisciplinary health-care teams or the general public. Families need to be better prepared and supported for the responsibilities they take on and the burden of care needs to be shared by others.

https://onlinelibrary.wiley.com/doi/pdf/10.1111/hex.13092

The challenges of caring for children who require complex medical care at home: 'The go between for everyone is the parent and as the parent that's an awful lot of responsibility'.

OBJECTIVE
High-quality care for children with medical complexity (CMC) is in its infancy. Residents have the opportunity to view care for CMC with a fresh perspective that is informed by their work across diverse health care settings and significant time spent at the bedside. This study aimed to identify the challenges and potential solutions for complex care delivery and education from their perspectives.


METHODS
We conducted three 60-minute focus groups with a purposeful sample of residents and recent graduates at a US tertiary-care medical center. Data were transcribed verbatim, and themes were identified using an iterative approach and modified grounded theory.


RESULTS
Sixteen participants identified 4 major challenges to caring for CMC: 1) lack of care coordination; 2) complex technology management; 3) patients' pervasive psychosocial needs; and 4) lack of effective health care provider training. Participants identified 3 solutions: 1) greater integration of primary care providers; 2) attention to psychosocial needs through shared decision making; and 3) integration of longitudinal patient relationships into provider training. We found that residents who experienced longitudinal relationships with CMC felt more efficacious and better equipped to handle challenges of caring for CMC as a result of their broader understanding of patients' priorities and of their role as providers.


CONCLUSIONS
Residents recognize important challenges and offer thoughtful solutions to caring for CMC. Although multiple solutions exist, formal integration of longitudinal patient experiences into residency training may better prepare residents to understand patient priorities and identify when their own attitudinal changes can guide them into more efficacious roles as providers.

Caring for Children with Medical Complexity: Challenges and Educational Opportunities Identified By Pediatric Residents

Over a third of Australian children have long-term health conditions, often involving multiple organ systems and resulting in complex health care needs. Our healthcare system struggles to meet their needs because of sectoral fragmentation and episodic models of care. Children with medical complexity (CMC) currently rely on tertiary paediatric hospitals for most of their healthcare, but this is not sustainable. We evaluated the impacts of Care Coordination on tertiary hospital service use and family outcomes. A pre- and post-implementation cohort evaluation of the Care Coordination service at a tertiary paediatric hospital network, was undertaken. From July 2015 CMC enrolled in the service had access to a Care Coordinator, shared-care plans, linkage with local general practitioners (GPs), and access to a 24-h Hotline from August 2016. CMC were those with ≥4 emergency department (ED) presentations, hospital stays of ≥14 days, or ≥ 10 outpatient appointments in 12 months. Medically fragile infants at risk of frequent future hospital utilisation, and children with medical problems complicated by difficult family psychosocial circumstances were also included. Care Coordinators collected outcomes for each enrolled child. Administrative data on hospital encounters 6 months pre- and post-enrolment were analysed for children aged > 6 months. An estimated 557 hospital encounters, were prevented in the 6 months after enrolment, for 534 children aged > 6 months. ED presentations decreased by 40% (Chi2 = 37.95; P < 0.0001) and day-only admissions by 42% (Chi2 = 7.54; P < 0.01). Overnight admissions decreased by 9% but this was not significant. An estimated Au$4.9 million was saved over 2 years due to prevented hospital encounters. Shared-care plans were developed for 83.5%. Of 84 children who had no regular GP, 58 (69%) were linked with one. Fifty-five (10%) of families were linked to the 24-h Hotline to enable remote access to support and advice. Over 50,000 km of family travel and 370 school absences was prevented. The Care Coordination service has clear benefits for the tertiary paediatric hospital network and for families. Ongoing evaluation is essential for continuous improvement and to support adjustments to the model according to the local context.

/pdf/significant-reductions-in-tertiary-hospital-encounters-and-2q1rsv9e4y.pdf

Significant reductions in tertiary hospital encounters and less travel for families after implementation of Paediatric Care Coordination in Australia

Objectives Family caregivers of children who depend on medical technology (CMT) provide highly skilled care up to 24 hours per day. Sleep disruption places family caregivers at risk for poor health and related outcomes that threaten their long-term caregiving capacity. Few studies exist that have measured sleep in family caregivers, and most have relied entirely on subjective measures. Methods In a prospective cohort study, family caregivers of CMT (n=42) and caregivers of healthy children (n=43) were recruited. Actigraphy data and a concurrent sleep diary were collected for 6 days/7 nights. Measures of sleep quality, depression, sleepiness, fatigue and quality of life were also administered. Results Family caregivers of CMT averaged fewer hours of sleep per night (mean (SD)) (6.56±1.4 vs 7.21±0.6, p = 0.02) of poorer quality (7.75±2.9 vs 5.45±2.8, p 0.01) than the control group. Three times as many family caregivers of CMT scored in the range for significant depressive symptomatology (12(33%) vs 4(10%), p = 0.01) and experienced excessive daytime sleepiness (16(38%) vs 5(12%), p 0.01). Fatigue was also more problematic among family caregivers of CMT (22.12±9.1 vs 17.44±9.0, p = 0.02). Conclusions Family caregivers of CMT are at risk of acute and chronic sleep deprivation, psychological distress and impaired daytime function that may threaten their capacity for sustained caregiving. Family caregivers of CMT may be important targets for screening for sleep disorders and the development of novel sleep-promoting interventions.

https://adc.bmj.com/content/archdischild/103/2/137.full.pdf

Sleep disturbance in family caregivers of children who depend on medical technology.

Importance Children with medical complexity (CMC) frequently experience fragmented care. We have demonstrated that outpatient comprehensive care (CC) reduces serious illnesses, hospitalizations, and costs for high-risk CMC. Yet continuity of care for CMC is often disrupted with emergency department (ED) visits and hospitalizations. Objective To evaluate a hospital consultation (HC) service for CMC from their outpatient CC clinicians. Design, Setting, and Participants Randomized quality improvement trial at the University of Texas Health Science Center at Houston with an outpatient CC clinic and tertiary pediatric hospital (Children’s Memorial Hermann Hospital). Participants included high-risk CMC (≥2 hospitalizations or ≥1 pediatric intensive care unit [PICU] admission in the year before enrolling in our clinic) receiving CC. Data were analyzed between January 11, 2018, and December 20, 2019. Interventions The HC included serial discussions between CC clinicians, ED physicians, and hospitalists addressing need for admission, inpatient treatment, and transition back to outpatient care. Usual hospital care (UHC) involved routine pediatric hospitalist care. Main Outcomes and Measures Total hospital days (primary outcome), PICU days, hospitalizations, and health system costs in skeptical bayesian analyses (using a prior probability assuming no benefit). Results From October 3, 2016, through October 2, 2017, 342 CMC were randomized to either HC (n = 167) or UHC (n = 175) before meeting the predefined bayesian stopping guideline (>80% probability of reduced hospital days). In intention-to-treat analyses, the probability that HC reduced total hospital days was 91% (2.72 vs 6.01 per child-year; bayesian rate ratio [RR], 0.61; 95% credible interval [CrI], 0.30-1.26). The probability of a reduction with HC vs UHC was 98% for hospitalizations (0.60 vs 0.93 per child-year; RR, 0.68; 95% CrI, 0.48-0.97), 89% for PICU days (0.77 vs 1.89 per child-year; RR, 0.59; 95% CrI, 0.26-1.38), and 94% for mean total health system costs ($24 928 vs $42 276 per child-year; cost ratio, 0.67; 95% CrI, 0.41-1.10). In secondary analysis using a bayesian prior centered at RR of 0.78, reflecting the opinion of 7 experts knowledgeable about CMC, the probability that HC reduced hospital days was 96%. Conclusions and Relevance Among CMC receiving comprehensive outpatient care, an HC service from outpatient clinicians likely reduced total hospital days, hospitalizations, PICU days, other outcomes, and health system costs. Additional trials of an HC service from outpatient CC clinicians are needed for CMC in other centers. Trial Registration ClinicalTrials.gov Identifier:NCT02870387

Hospital Consultation From Outpatient Clinicians for Medically Complex Children: A Randomized Clinical Trial.

Children with medical complexity (CMC) have a wide range of long term health problems and disabilities that have an adverse impact on their quality of life. They have high levels of family identified health care needs and health care utilisation. There is no Australian literature on the experiences of health care providers working in the Australian tertiary, secondary and primary health care system, whilst managing CMC. This information is essential to inform the design of integrated health care systems for these children. We address this knowledge gap by exploring the perceptions and experiences of health care providers on the provision of health care for CMC aged 0 to 18 years. A qualitative research study was undertaken. Stakeholder forums, group and individual in depth interviews were undertaken using a semi-structured interview guide. The stakeholder forums were audio recorded and transcribed verbatim. Field notes of the stakeholder forums, group and individual interviews were taken. Inductive thematic analysis was undertaken to identify key themes. One hundred and three providers took part in the stakeholder forums and interviews across 3 local health districts, a tertiary paediatric hospital network, and primary health care organisations. Providers expressed concern regarding family capacity to negotiate the system, which was impacted by the medical complexity of the children and psychosocial complexity of their families. Lack of health care provider capacity in terms of their skills, time and availability to manage CMC was also a key problem. These issues occurred within a health system that had impaired capacity in terms of fragmentation of care and limited communication among health care providers. When designing integrated care models for CMC, it is essential to understand and address the challenges experienced by their health care providers. This requires adequate training of providers, additional resources and time for coordination of care, improved systems of communication among services, with timely access to key information for parents and providers.

/pdf/a-qualitative-study-of-health-care-providers-perceptions-and-1ne8ye7j5c.pdf

A qualitative study of health care providers’ perceptions and experiences of working together to care for children with medical complexity (CMC)

Introduction: Children with medical complexity (CMC) require highly specialised care, often from multiple providers and over many years. This paper describes the first 18 months of development of the Kids Guided Personalised Services (GPS) Integrated Care Program (the Program). This Program aims to improve health care experience; communication and to streamline provision of care. Discussion: Key enablers across the Program were put in place and 5 individual project streams were used to implement change. An extensive formative evaluation process was undertaken to truly understand all perspectives in developing the Program. Conclusion/Key Lessons: This Program supports families who are caring for CMC by developing shared care models that bring together local health services with the tertiary hospitals. The methodology used has resulted in comprehensive system change and transformation; reduced presentations to the Emergency Department (ED), avoidable admissions and travel time. A challenge remains in meaningfully engaging primary health care providers.

/pdf/dealing-with-the-hospital-has-become-too-difficult-for-us-to-4wgsyu2ecb.pdf

“Dealing with the Hospital has Become too Difficult for Us to Do Alone” – Developing an Integrated Care Program for Children with Medical Complexity (CMC)

Tim Hoffmann

Papers

A qualitative study of health care providers’ perceptions and experiences of working together to care for children with medical complexity (CMC)

“Dealing with the Hospital has Become too Difficult for Us to Do Alone” – Developing an Integrated Care Program for Children with Medical Complexity (CMC)