Experiences of Inpatient Healthcare Services Among Children With Medical Complexity and Their Families: A Scoping Review

ABSTRACT Background Children with medical complexity (CMC) have high healthcare utilization and face unique challenges during hospital admissions. The evidence describing their experiences of inpatient care is distributed across disciplines. The aim of this scoping review was to map the evidence related to the inpatient experience of care for CMC and their families, particularly related to key aspects and methodological approaches, and identify gaps that warrant further study. Methods This scoping review was conducted in accordance with JBI methodology and included all studies that reported experiences of acute hospital care for CMC/families. All study designs were included. Databases searched included EMBASE, CINAHL Plus with Full Text, Web of Science, MEDLINE(R) and APA PsycInfo from 2000 to 2022. Details about the participants, concepts, study methods and key findings were abstracted using a data abstraction tool. A thematic analysis was conducted. Results Forty‐nine papers were included: 27 qualitative studies, 10 quantitative studies, six mixed methods studies, two descriptive studies and four reviews. Some quantitative studies used validated instruments to measure experience of care, but many used non‐validated surveys. There were a few interventional studies with a small sample size. Results of thematic analysis described the importance of negotiating care roles, shared decision‐making, common goal setting, relationship‐building, communication, sharing expertise and the hospital setting itself. Conclusion CMC and families value relational elements of care and partnering through sharing expertise, decision‐making and collaborative goal‐setting when admitted to hospital. Patient or Public Contribution This review was conducted in alignment with the principles of patient and family engagement. The review was conceptualized, co‐designed and conducted with the full engagement of the project's parent–partner. This team member was involved in all stages from constructing the review question, to developing the protocol, screening articles and drafting this manuscript.


| Introduction
Children with medical complexity (CMC) have among the highest inpatient utilization in paediatrics, accounting for up to half of the children admitted to tertiary care paediatric hospitals [1,2].CMC share characteristics of chronic diseases, high healthcare utilization, high care needs in the home and community and functional limitations [3].They are one of the fastest growing populations in paediatrics and collectively account for one-third of child health spending [4,5].Considerable efforts have focused on determining the best models of care to support these children [6,7].Much of this work has focused on outpatient care coordination programmes.However, as one of the highest utilizers of inpatient resources, evaluating and designing inpatient care models is an equally important priority.
CMC are at increased risk of adverse events and experiences during hospitalizations.Numerous factors complicate the care of CMC in hospital including polypharmacy, rare diseases, need for multispecialty and multidisciplinary care, complex technology and inherent fragility [8,9].Their hospitalizations are more likely to be prolonged and they have higher rates of readmissions than other paediatric groups [10,11].They are more likely to need intensive care and have higher rates of death [12][13][14].Adverse events and medication errors are more common among CMC [11,15,16].CMC and their families are less satisfied with inpatient care than either children with acute illnesses or single non-complex chronic diseases [17,18].
The Institute for Healthcare Improvement framework for value-based care emphasizes patient experience as one of the core aims [19].Experience of care includes all interactions, shaped by an organization's culture, that influence an individual's perception of the care they receive [20,21].This includes functional elements such as wait times as well as relational elements such as communication with healthcare providers (HCPs) [22].This outcome shows consistent positive associations with patient safety, adherence to treatment regimens and objectively measured health outcomes [22].The patient and family experience of care includes both their perceptions and ratings of the care delivered; thus, it can be influenced by unique personal circumstances and past experiences [23,24].
Perhaps not surprisingly, CMC and their families often rate their experience of care lower than other patient groups [24].This could be related to their greater frequency of adverse outcomes.However, qualitative research points towards other potential contributors.Parents who provide high levels of expert care in the home may struggle with a lack of control in the hospital setting [25].HCPs do not have a template for integrating parental expertise into inpatient care [26].The need to negotiate roles between expert parents and HCPs can introduce additional stress and tension [27].Finally, the fragility of these children and the frequency of their hospitalizations cannot be underestimated as sources of stress to families [28,29].
Improving the care of CMC in the hospitalized setting is an emerging focus in the field of paediatric hospital medicine.
A Canadian national James Lind Alliance (JLA) priority setting partnership in 2020 emphasized the need to identify best practices and models of inpatient care for CMC [30].Developing these models will require close attention to all pillars of care-patient safety, clinical effectiveness and experience of care-to produce the greatest impact.Scientific evidence describing experience of care for CMC could reveal the most important pressure points but is currently distributed across disciplines.Further, studies to date are limited by small sample sizes of specific populations in discrete clinical settings, which likely do not reflect the breadth of experience of CMC.If synthesized, this evidence could be an essential foundation to developing new models of care.

| Aim and Objectives
The aim of this scoping review was to synthesize the evidence related to the inpatient experience of care for CMC and their families to guide the future development and evaluation of inpatient health services for this population.Specifically, the review objectives were to (a) describe and map existing evidence including key aspects of experience of care and methodological approaches and (b) identify gaps in knowledge that warrant further study.

| Methods
A scoping review was chosen as the most appropriate method to map the existing literature around a concept, as opposed to answer a specific research question, particularly when the evidence is broad and diverse [31,32].This review followed the JBI approach to scoping reviews and is reported in accordance with the Preferred Reported Items for Systematic Reviews and Meta-Analyses Scoping Review (PRISMA-ScR) statement [33,34].The protocol was developed a priori and published in Open Science Framework [35].

| Search Strategy
The search was constructed with the guidance of an academic health sciences librarian (KAH).Databases searched included EMBASE (OVID), CINAHL Plus with Full Text (EBSCO), Web of Science Core Collection, MEDLINE(R) and Epub Ahead of Print, In-Process, In-Data-Review & Other Non-Indexed Citations and Daily (OVID) and APA PsycInfo (OVID).Keywords and subject headings were developed for each of the two main concepts, 'CMC' and 'inpatient care setting', that formed the basis of the review.The search was limited to publications from 2000 onwards corresponding broadly to the release of the landmark Institute of Medicine report highlighting the importance of patient experience of care as an outcome and quality indicator [21].Searches were conducted on 26 April 2022, and the complete search strategies for all the databases can be found in Supporting Information S1.Search results were uploaded into Covidence, a screening and data extraction software, where duplicates were removed and all screening activities took place.
Participants: This review included CMC (age 1-17 years) as well as their parents, family members and caregivers.Alternate descriptors were included in the search (e.g., children with complex, chronic conditions).To qualify for the review, at least 50% of the participants in a study must meet these criteria.After the review began, studies were found that included both a CMC population and a non-CMC control group.These studies were felt to be eligible for inclusion because CMC were the population of interest, even if the comparator group was larger.Qualitative findings from non-CMC/control populations were not incorporated into the results of this review.
Concept: This review focused on the concept of 'experience of care', defined as the sum of all interactions, shaped by an organization's culture, that influence patient perceptions across the continuum of care [36].This pertains specifically to experiences as a 'user' or consumer of healthcare services [20].Some published definitions of experience of care also include 'human' and 'illness' experiences, as described by Oben and Corliss [37].The definition chosen for this review focused on user experiences, but human/illness experience of care will be analysed and reported in a future manuscript.
Context: Studies that pertained to the inpatient setting, particularly in acute care hospitals (ward and intensive care), were included.
Types of sources: Quantitative, qualitative, experimental and observational study designs and reviews were all included.Grey literature, letters to the editor and opinion papers were not included.
Exclusion criteria included care settings of palliative care, neonatal intensive care unit (NICU) and inpatient mental health.These were felt to be unique settings that would warrant a more targeted review.Infants less than 1 year were excluded as a recent review addressed this population [38].Studies specifically addressing the experiences of hospital discharge were also excluded, as this topic was felt to warrant a separate review.

| Screening and Selection
The inclusion and exclusion criteria were first pilot tested independently by all reviewers.The team then met to discuss disagreements and clarify the selection criteria.Following the calibration exercise, four reviewers participated in the screening where two independent reviewers screened each record.Disagreements were resolved by discussion.A third reviewer was available to help resolve disagreements but was not required.

| Data Abstraction and Synthesis
The data extraction tool was created by reviewers and pilot tested on the first three records by two independent reviewers.No modifications were necessary.The data extracted included specific details about the participants, concepts, context, study methods and key findings.A final calibration step was performed in which a second reviewer reviewed the abstraction of the first five records.There was satisfactory agreement, so one reviewer proceeded to extract the remainder of the data.The data were synthesized in text and tables.

| Thematic Analysis
Findings were analysed using inductive thematic analysis [39].Qualitative results from these studies included current experiences as well as participants' reflections on past experiences (positive and negative) and 'ideal' experience of care.Incorporating the spectrum of these results into our analysis contributed to a comprehensive understanding of experience of care, the definition of which includes the subjective perceptions and perspectives of individuals.One research team member performed the primary coding of the qualitative findings.Preliminary themes were presented to the full research team (with representation from multiple health disciplines and a parent-partner) at regular intervals to discuss and refine themes.

| Results
In total, 10,113 records were identified of which 5646 were duplicates.Title and abstract screening excluded 3905 records and 562 were reviewed in full text.Of those, 49 met inclusion criteria and form the basis for this review (Figure 1).Screening of reference lists of the included studies did not reveal any additional articles.All 49 articles included findings related to the concept of 'user' experience of care (Table 1); these results were included in the synthesis later.
Table 2 presents an overview of included studies.The majority of existing evidence comes from the United States (n = 25), the United Kingdom (n = 5) or Canada (n = 4).Most studies enroled CMC (n = 34) or children with severe disabilities (n = 10) as nondiagnostic study populations with the remainder focused on children with cerebral palsy (n = 2), spinal muscular atrophy (n = 1) or ventilator dependence (n = 2).Only a small number of studies enroled CMC themselves, with mothers forming a large majority of the study populations.The studies used predominantly qualitative methodologies (n = 27) with a lesser proportion using quantitative (n = 10) or mixed (n = 6) approaches (Table 3).The results of the thematic analysis will be described, followed by an overview of the study methodologies.

| Part 1: Results of Thematic Analysis
There were seven themes identified that described essential components of inpatient experience of care from the perspective of CMC and their families.These include the following: (1) negotiation of care roles; (2) shared decision-making (SDM); (3) common goal setting for the hospitalization; (4) relationships between CMC, their families and HCPs; (5) integration of expertise of CMC, their families and HCP; (6) communication strategies and practices; and (7) the hospital setting and environment itself.

| Negotiation of Care Roles
Care roles must be negotiated and established at different stages during the course of inpatient care, which contributed to a sense of partnership and teamwork [25,40,46].An open discussion about roles and responsibilities for both nurses and parents promoted confidence and mutual understanding [78].Negotiation of care boundaries took time and work to establish [79,80], with occasional tension due to a lack of role clarity [63,80].Some parents found that they needed to fight with HCPs to enact their roles and provide the parental care their child required [79,81], although this was not a universal finding [55].At times, negotiation around a parent's readiness to learn about care interventions and technologies was also required [40,83].Authors of one review article suggested that adjustments in parental roles in hospital were essential to ensure safe and high-quality care, particularly for children with intellectual disabilities [55].

| Shared Decision-Making
Many studies described how parents want to partner in making decisions regarding their child's care [27,46,50,56,63,78,80].Parents valued being involved in decision-making [48] or in control of decision-making [69].Many expected to be an equal part of the team [63] and wanted to be involved in choices regarding their child's treatments [54,82].It was important to parents that decisions were based on their individual child as opposed to the diagnosis [57].Children also expressed their desire to be involved in decision-making [25].SDM was enabled by good communication skills and active listening (particularly to family values and concerns) [50,57] as well as parental knowledge and sources of information [69].Barriers to SDM included poor HCP communication skills, a large medical team that could be intimidating, insufficient time for parents to prepare and health system factors (e.g., availability of specific HCPs) [50].The decision time horizon (how quickly the decision needed to be made) influenced parental participation in SDM [57,69].Even though they desired high degrees of involvement, parents frequently expressed uncertainly around decision-making, which was under-addressed [69].Quantitative studies reinforced that many parents desire SDM (40%), but a significant proportion also wanted to make the final decision largely on their own (41%) [54].In only one study, conducted in the Middle East, did participants (mothers) feel that decisionmaking should be the responsibility of the doctor [41].

| Common Goal Setting
Closely related to specific, contextual SDM was setting common goals for the hospitalization.Physicians typically did not elicit                      suggesting a disconnect between perceived and actual support parents' goals for the child at the beginning of hospitalization; however, many parents wanted to share these goals with physicians [49].Parents described setting these larger goals for their child or for the hospital admission as an important part of their role [84].Typically, physicians and parents shared the underlying goal of getting the child better to go home [49].Incongruency of other goals between parents and physicians also existed [49,50,55,58,68,80].Goals that parents felt were not addressed included limiting unnecessary testing, establishing follow-up plans, understanding their child's medical diagnosis and prognosis, developing strategies to prevent future hospitalizations, improving their child's daily life, creating palliative care plans and feeling empowered as a parent [49,50,81].In one study, researchers found that parents were more likely to have goals related to their child's life skills such as becoming more independent and learning to communicate, whereas physician goals were more likely to focus on decreasing parent burden, keeping the child out of hospital, avoiding complications and coordinating care [41].

| Relationships Between CMC, Families and HCPs
Relationships with HCPs, as described by CMC and their families, were grounded in rapport, continuity of care and trust [70].A recent review by English et al. proposed the following definition of rapport in the healthcare encounter: 'a perception of connection with another individual based on respect, acceptance, empathy and a mutual commitment to the relationship' [70].Parents included in this review were able to identify HCP factors that contributed to rapport including trustworthiness, transparency and respect along with supportive knowledge and actions [40,44,60].The HCP's ability to see the situation from the parent's perspective and look at the big picture facilitated rapport, as did a lack of bias about the child [44].Rapport was maintained through difficult situations when HCPs were flexible, open-minded, compassionate and humble [44].Rapport was inhibited when HCPs misunderstood a child's baseline (in relation to their current state) or failed to understand or appreciate parental intuition [80].Insensitive staff [81] Other/not specified a a Includes review articles.
and medical culture, including the fear of being labelled a 'difficult' parent [80], were also barriers to building rapport.Some quantitative studies revealed that parents of CMC report lower ratings of staff awareness of their child's needs compared to parents of non-complex children [29]; however, they also tend to indicate that 'respectful and supportive care' as one of their most positive experiences [27,65,84].
Definitions of continuity of care in the literature tend to emphasize two main components: a continuous caring relationship and seamless coordination across providers/ systems [71].Parents in this review emphasized the importance of both components in their hospital experiences [27, 43-45, 56, 79, 82] and the negative impacts when continuity was lacking [43,48,51,56,81].Continuity had a positive impact on quality of care [43,56] and fostering individualized care [43].CMC themselves valued continuous relationships and specifically noted that this would facilitate comfort and support [25].A lack of continuity negatively impacted care experiences regarding coordinated treatment plans, patient management [43,48,56,81] and readmissions [51].Without continuity, parents were concerned that HCPs would not have adequate knowledge of the child to provide competent care [43].Parents identified breakdowns in continuity of care and resulting poor experiences that influenced their expectations of future hospitalizations [56].Continuity was viewed as the foundation for rapport [44], trust and a sense of security with HCPs [27,43,79,82], as well as creating secure attachments between nurses and patients/families [43,62].
Trust was central to the relationship between CMC/family and HCP [44,47].Trust was built through shared experiences with HCPs throughout the child's illness [80], engaging in highquality communication [48], continuity [27,43,56], working in partnership [56] and observation of healthcare teams working well together [80].Giambra, Stiffler, and Broome found that trust was the most important need perceived by parents [78].Some parents described feeling a lack of trust in HCPs [47,60,82].When trust was not established, parents could be reluctant to leave their child's bedside [82].Negative past experiences with hospitalizations could adversely impact the formation of trust in future relationships and encounters [47].

| Integration of Expertise
The multiple forms of expertise were highlighted in many of these studies.In addition to professional and technical expertise of HCPs, there was also parent expertise based on knowledge acquisition, familiarity with the child and intuition.
Parents did not always perceive that their expertise was valued, which led to poorer hospital experiences [79].Some parents felt excluded from provision of care, prevented from fulfilling their roles as parents [79,81] and unappreciated for the care that they provided for their child [51].Parents felt their presence as experts in their child's care was a protective factor in ensuring high-quality care and preventing errors [55].In one study, researchers found that the sophisticated knowledge of some families could significantly alter the care dynamic [76].
Parents described the importance of HCP expertise for the development of optimal partnerships.They wanted HCPs to demonstrate specific training and knowledge in their child's condition [25,60], special care competencies, managing complex medical situations [27], knowledge of various intellectual disability labels [55] and advocacy [78].HCPs and parents were able to develop partnerships when HCP expertise was present and confidently enacted [25,51,56,60].Parents reported that a lack of HCP knowledge, which led to incorrect assumptions about CMC, could result in poor-quality care [55].In one study where children were interviewed, children expressed that they wanted their doctors and nurses to display competence, knowledge and organization [25].

| Communication Practices
An additional focus in existing research relates to the practical aspects of communication, regardless of the nature of the HCP relationship and presence/absence of continuity.
The ability to share information clearly and accurately was an important contributor to partnership [45,48,57,63,75,78,80].Parents wanted to be kept up to date with a plan of care [75,78,80], daily goals and test results [75].In some cases, parents wanted additional information and discussion to clarify risks and benefits of treatment options [57].Communication deficiencies were evident in the poor integration of home care routines and schedules in hospital care, which resulted in errors [80] and complications at the time of discharge [75].Parents felt that improved information sharing could smooth transition for school services when in hospital [45].In quantitative studies, parents of CMC rate 'sharing general information' among the lowest levels of satisfaction, significantly lower than parents of non-CMC [27,65,84].
Various strategies were described that enhanced the quality of communication [80].Parents valued having HCPs who were accessible [60,78], reliable to answer questions [60], engaged in frequent face-to-face discussions [80] and demonstrated good listening skills [46,48,78].Words of compassion and kindness benefited parent-nurse communication [78].Children valued nurses who explained painful procedures and used humour to decrease stress [25].Giambra et al. described the Theory of Shared Communication (TSC) [46,47], outlining the need to respect one's own and each other's expertise alongside critical communication behaviours including acts (questioning and listening), functions (explaining and advocating) and outcomes (verifying understanding and negotiating roles) [46,47].
Several negative communication approaches were described, including 'rude' or abrupt manners [60].Conflicting information provided by different HCPs was perceived as poor communication [75], as was disclosing a diagnosis without adequate expressions of empathy or support [57].Assumptions, stereotypes and judgemental language about the child consistently led to a lack of effective communication [55].

| Hospital Setting and Environment
Parents described in detail how routine disruption impacted their experience of care [65].Typical hospital procedures, such as frequent vital sign checks, disrupted the child's routine and negatively impacted the experience of care [51,57,76].Baird et al. described implicit and explicit rules within the PICU [43].
Parents were implicitly expected to know the working hours of nursing staff, the educational needs of the physicians in training, and set delivery times for supplies and medications [42].Parent requests to vary or interrupt this schedule were not welcome [42].Rules could be bent to provide personalized care but this also caused confusion when rules were adjusted for some families but not others [42].Adapting hospital routines to the needs of individual CMC was viewed as positively impacting the experience of care [60].
The physical and social environment in the hospital impacted the experience of children and families.The environment could undermine relationships between parents and children due to minimal privacy, a lack of control and a loss of personal identity [25,59,62].Hospitals caused disruption to sleep [24,60,66,73], were noisy [24,60,73] and placed children at risk of nosocomial infection [66,81].The introduction of medical technologies in the child's care caused anxiety [83].Parents identified challenges associated with 'living in hospital' including access to appropriate accommodations for themselves [48].The need for adequate sleep conflicted with the parent's need to stay at their child's bedside to ensure quality care [82].
Interventional studies that evaluated care models for CMC were described in four articles [52,63,74,84].Improving communication/coordination was a core tenet of all programmes and all were either quantitative or mixed method designs.Interventions included a behavioural health programme focusing on psychosocial support [74]; two programmes using structured communication tools [52,63]; an inpatient programme intended to enhance developmental experiences of CMC [84]; a care coordination model for inpatient and outpatient care [64]; a single inpatient nursing unit designated for CMC; and a multifaceted, multidisciplinary HCP team [7].
Potential applications for clinical practice and healthcare delivery based on the results of this review are presented in Table 4.

| Discussion
The aim of this scoping review was to map the existing literature on the experiences of inpatient care for CMC and their families, describe the various aspects and methodologies and identify knowledge gaps.This review specifically pertains to the experience of care as a 'user' of healthcare services [20,37].CMC and their families who participated in these studies reported varied experience of care in relation to their 'ideal' state.Through qualitative and quantitative methods, participants described the importance of aspects such as communication, relationships, merging expertise of CMC, their families and HCPs and the significant impacts of the hospital setting.
These results confirm and reinforce the value that CMC and their families place critical elements during hospitalizations such as role negotiation, SDM and goal sharing.Relational elements of care are paramount, which is consistent with evidence from other healthcare settings and populations [28,36].In this review, relationships with HCPs, developing and incorporating expertise from both patient/parent and HCP and clear communication Common goal setting Recognize that the goals for the hospitalization may be different between children/parents and the healthcare team.Explicitly establish and agree upon goals that reflect the priorities of families and HCPs.

Relationships between CMC, families and HCPs
Optimize the provision of continuity of relationships with HCPs wherever possible.Strive to achieve optimal coordination of care and continuity of the child's health information.Personally acknowledge and address personal biases regarding CMC and their families.Recognize the complexity of establishing trust due to previous negative experiences.Recognition could include formal or informal avenues where families could share these experiences with hospitals and offer suggestions to prevent similar occurrences.

Integration of expertise
Recognize the need to integrate professional expertise with the unique expertise brought by parents of CMC.Incorporate individualized knowledge of parents into the plan of care.Engage HCPs in specific training regarding the care needs of CMC (e.g., analgesic requirements in children with developmental disability).

Communication practices
Prioritize timely delivery of clear and accurate information.Employ active listening skills to ensure parent concerns are heard and understood.Improve team communication to minimize conflicting messages and smooth transition between home/community and hospital.

Hospital setting and environment
Where possible, tailor hospital routines and policies to meet the individual needs of CMC/parents.Recognize the disruptive nature of the hospital environment on children and families.Support families in trying to 'normalize' their children's lives and routines during hospitalizations.
were highlighted as essential to enabling positive experiences for CMC and their families.Healthcare system factors not only influence these relational elements but also contribute to the environment that can be restrictive, generic and unsupportive.
Many of the concepts described in this scoping review are also central tenets to the practice of patient-and family-centred care (PFCC).PFCC is the gold standard in delivering paediatric care and is intended to facilitate partnerships with patients and families [86].PFCC emphasizes the importance of incorporating patient/family knowledge, good communication practices, collaborative decision-making and ensuring that the physical environment is supportive [23].PFCC is associated with improved quality of care by increasing satisfaction, reducing stress, improving patient knowledge and self-management skills and even reducing hospital length of stay [87,88].Alarmingly, the themes identified in this review that corresponded closely to PFCC were often the practices that were most deficient from the perspective of CMC and their families.This suggests a knowledge-to-practice gap in the implementation of PFCC, at least to this population of CMC and their families.Providing PFCC to CMC in hospital is further complicated by a lack of evidence-based models of care as demonstrated by our review which found only four interventional studies.These were further limited by small sample sizes, single-institution design and lack of a control group.Future research should focus on developing and evaluating inpatient interventions for CMC that would target and address the experience of care outlined in this review alongside clinical, economic and patient-oriented outcomes.
One of the objectives of this review was to identify gaps in the literature.There is a relative lack of quantitative studies even though validated instruments are available to measure experience of care concepts.Of the studies that collected quantitative data, the majority used non-validated survey instruments that limit their rigour and prevent replication and comparison with other studies [89].There is an overall lack of interventional studies, in particular studies that employ high levels of patient and family engagement (such as co-design) and integrate patientand family-oriented outcomes into their evaluation framework.These types of studies may have the greatest potential to influence care experiences for CMC and their families.
The other potential gap is whether this evidence has captured all the essential aspects of experience of care for CMC/ parents.Some authors approached their research with research questions pertaining to specific elements such as SDM [41,54,69], whereas others sought to describe the experience of care in a more general sense [56,59,61,82].The existing research likely captured many important issues for CMC and their families, but it remains possible that some crucial aspects were missed.Another consideration is whether the populations in these studies are representative of the population of CMC and their families at large.Demographic characteristics of study participants were reported but often did not include variables that would identify racialized minorities or gender diverse individuals.Those with limited English language proficiency were almost invariably excluded.Similarly, fathers were under-represented in these studies.Thus, this description of experience of care may not reflect the perspectives of a diverse CMC population.

| Limitations and Strengths
There are limitations inherent to this review.Methodological decisions made in the design and conduct of this review likely influenced our results in significant ways.For instance, we selected a definition of 'experience of care' that focused on 'user' or consumer-related experiences, although other definitions would have included a broader range of experiences.This was done to ensure a feasible and meaningful synthesis and to best address our objectives.
A large majority of the research was conducted in the United States and only English language publications were included limiting extrapolation to other countries and populations.There may also be subpopulations of CMC based on demographics, diagnosis, neurodevelopmental disability or care needs, who have unique experience of care that are not captured fully in this review.Even with these limitations, this comprehensive review of hospital care for CMC synthesizes research from more than two decades, covering a wide variety of patient and family experiences.Inclusion of a parent-partner with lived experience of parenting a child with medical complexity (FB) ensured that our review objectives were relevant and that our results and discussion reflected the patient and family perspective.This review also identified pragmatic strategies that can be employed immediately by HCPs and institutions to address the experience of care for CMC and their families.

| Conclusion
CMC and their families describe achieving an 'ideal' experience of care through negotiating care roles, decisions and goals, as well as relationship-building, communication, merging the expertise brought by CMC, their families and professionals, and adapting the hospital environment to better meet their needs.Developing and testing interventions to improve the experience of care for CMC and their families are imperative to advancing this field of knowledge and improving the care that CMC receive in hospital.

FIGURE 1 |
FIGURE 1 | Flow chart of record search and selection process.

TABLE 2 |
Overview of included studies.

TABLE 4 |
Potential applications for practice.Negotiation of care rolesEngage in explicit and open discussion about the roles of parents and other members of the healthcare team.These can overlap and vary, both over time and with different individuals.