Abstract
PURPOSE:
Children with medical complexity (CMC) often use rehabilitative services (“therapy”) to achieve optimal health outcomes. The study aims were to characterize caregiver and provider experiences with: 1) determining the suitability of therapy and 2) obtaining therapy for CMC.
METHODS:
Primary caregivers of CMC (n = 20) and providers (n = 14) were interviewed using semi-structured questions to elicit experiences of therapy. Interviews were recorded, transcribed and coded to identify caregiver and provider reported themes. Applied thematic analysis was used to characterize themes related to study objectives.
RESULTS:
Participants endorsed challenges setting therapy goals amongst competing patient and family priorities. They also identified logistical challenges to obtaining therapy, including transition from early intervention services to school-based years. Participants raised concerns about variability in obtaining school-based therapy and insurance coverage of community-based therapy. Overall, funding, salary, credentialing requirements, and training impacts the pediatric therapy workforce’s ability to meet the need of CMC.
CONCLUSION:
Setting the ideal “dose” of therapy within the individual and family context can be challenging for CMC. Sufficient government programming, insurance coverage, and workforce availability were barriers to obtaining services. This study adds a more detailed understanding of therapy for CMC that can be used to inform future research and policy work.
Keywords
Introduction
Children with medical complexity (CMC) are a population of pediatric patients with medical fragility and extensive care needs estimated to comprise approximately 1% of the pediatric population but account for up to one-third of pediatric health care costs [1–3]. Examples include children with severe neurologic impairment (e.g. spastic cerebral palsy with complex seizures), children with lung sequalae from prematurity (e.g. need for long-term mechanical ventilation), or children with life-limiting genetic disorders or syndromes that involve multi-organ systems (e.g. spinal muscular atrophy). Any of these chronic complex conditions can impact a patient’s body function and structure thereby impacting their activity and participation indirectly or directly per the International Classification of Functioning, Disability and Health (ICF) [4].
Physical therapy (PT), occupational therapy (OT), and speech pathology (SP) are rehabilitation and habilitation services (“therapy”) commonly used to help CMC maintain, learn, or improve skills to increase functioning as well as participation that have been impaired or lost due to their disability or condition [4, 5]. High quality therapy has the potential to enhance a child’s functional abilities and may also improve other health outcomes [4]. As a hypothetical example, a child’s ability to move independently may be hypothesized to increase their participation at school, while their ability to swallow safely may reduce aspiration, thereby preventing pneumonia [6–8].
While categories of unmet therapy need have been identified in previous research, most studies primarily focused on the broad population of children with special health care needs [9–13]. CMC are a sub-population who by definition have higher illness severity, such as spastic quadriplegic cerebral palsy, Duchenne’s muscular dystrophy, Trisomy 18, or spina bifida. Hence, they may be even more reliant on therapy to optimize health outcomes but may have rare conditions for which little disease-specific data are available.
An understanding of how providers and caregivers determine the suitable level of therapy for CMC and experience obtaining services, once sought, remains poorly understood [4, 9]. In clinical practice, both prescribing physicians and rehabilitation professionals often evaluate and recommend the frequency and duration of therapy for a given child. For patients with significant or rare medical conditions, it is not always clear how much the patient would benefit from therapy. Therefore, the objectives of this study were to characterize caregiver and provider experiences with determining the suitability of therapy and obtaining therapy for CMC, to inform future research and policy.
Methods
The institutional review board approved the study.
Study design
This is a qualitative study of in-depth key-informant interviews using applied thematic analysis from 4/2016-10/2016 at a free-standing (quaternary) children’s hospital.
A semi-structured interview guide was developed using the following steps: 1) a review of the literature was conducted for what was known about the study topic; 2) the review’s findings were discussed among study authors and used to frame the study’s objectives and how the interview guide’s questions would thematically connect to those objectives; 3) the guide’s questions were initially drafted by the primary investigator then revised by the other study authors in iterative written drafts until general consensus was reached regarding question topics and wording; and then 4) five non-participating providers and a parent who were not participants in the study provided feedback on understandability and topic relevance, which was used to create the guide’s final version (Appendix 1). To establish a common ground and shared terminology, the guide included an introduction in which parents were informed about the purpose of the interview, including why their child was eligible along with definitions of the types of care services that would be discussed in the interview. The guide then asked about their experiences with therapy for their child including barriers to care.
Study population
Caregiver recruitment
Patients were identified from the neurodevelopment clinic, general pediatric clinic, or inpatient service at a quaternary care children’s hospital. Caregivers could be eligible for participation if their child (the patient): 1) was age 0–17 years; 2) used ancillary care services, including therapy services; and 3) had a complex chronic disease, defined in this study as a significant chronic condition in more than 2 body systems, a progressive condition (e.g. tuberous sclerosis) or continued dependence on technology for at least 6 months [14]. Children with malignancies were not considered. Their caregivers were consented and purposively sampled to maximize diversity in race/ethnicity, geography, and insurance type [15]. Caregivers who were less than 18 years of age, with limited English proficiency or serving foster children were excluded.
Provider recruitment
Providers were recruited by email if involved with therapy through: a) direct care (e.g. therapist); b) management of a specific therapy program (e.g. early intervention (EI) director); c) referrals or help with referrals (e.g. physician, social worker); or d) administration of statewide program(s) (e.g. government official). Providers were purposively sampled for experience across school, EI, community-based, and quaternary care settings and urban/rural locations [15].
Analysis
Interviews were conducted by the primary investigator (CF). Interviews were transcribed, anonymized, and then coded using applied thematic analysis (Dedoose, V7.5.9, © 2016) by a multidisciplinary team [general pediatrics (CF), pediatric physical medicine and rehabilitation (MF) neurodevelopment social work (LW), and medical anthropology (EJF)] [16]. For open coding, all four read each transcribed interview line by line and applied codes to sections of the text that represented certain concepts or themes directly pertaining to our research aims [15, 17]. The team then met to establish reliability of coding through direct comparison of open coded excerpts. If divergence occurred, excerpts were recoded and discussed again, all in an iterative manner until all code definitions were finalized. Once finalized, the codes were applied to all transcripts by two team members (CF, MF). Codes were then excerpted and reviewed with the entire analysis team who grouped the codes into meaningful themes and explored relationships between themes related to therapy services. Altogether the team met 17 times. Participants were recruited for participation until the identified themes captured the majority of the data (i.e. thematic saturation) [18].
Results
Twenty family caregivers and fourteen health care personnel participated. Detailed demographics are shown in Table 1. Eight were providers including a physical therapist, occupational therapist, speech-language pathologist, neurodevelopmental behavioral physician, rehabilitation physician, school nurse, and two primary care physicians (rural and urban). Six additional interviews were performed with directors or administrators.
Primary Caregiver Participant and Patient Demographics
Primary Caregiver Participant and Patient Demographics
Theme 1: Challenges determining therapy dose
First, respondents reported that determining the amount of therapy (i.e. dosing) needed for a given patient could be challenging (Table 2). For most patients, the intensity and duration of services (i.e. dose) was tied to the degree of delay or impairment (e.g., inability to sit). Ideally, therapy goals were then linked to patients’ quality of life and general health.
Barriers to Determining Therapy Service Dose for Children with Medical Complexity, by Theme
Barriers to Determining Therapy Service Dose for Children with Medical Complexity, by Theme
“[My daughter] has cerebral palsy with variable tone . . . [therapy helps with] head and trunk control for her secretions and keeping her airway open . . . so she’s not constantly slumping to one side [which] helps maintain lung capacity . . . ” –Mother 13
However, since function could be affected by childhood growth in addition to disease progression, providers could find it difficult to measure whether patients were meeting therapy goals based on the amount of therapy being performed. Patients might benefit by maintaining skills or minimizing skill loss. However, this could be masked as their disease progressed. Without clarifying whether a child was making measurable improvements, it would be difficult to know whether to do more or less therapy.
“A lot of standardized testing doesn’t necessarily show a lot of change when [children] grow. If you measured children at three and then measured them a year later, they would still be [at the level of a] three [year old]...but you have to account for the fact that they grew four inches and now their hamstrings are super tight.”–Physical therapist
For patients with significant global delays or an unknown prognosis, determining the suitable frequency and duration of therapy to achieve meaningful goals could be unclear. Some caregivers tended to err on the side of doing therapy with the hope of improvement even if gains were small or theoretical, sometimes referencing “hope” or “chance”.
“[My granddaughter is] so incapacitated that any advancement that she can make physically or even verbally would assist her a lot and probably assist us, too . . . I don’t know if any of that can even be made better, but I figure if there’s a chance then we ought to try our best to make sure she gets everything that she can.” –Grandparent 2
However, providers noted that this could be counterproductive, and that therapy benefits, risks, and burdens ideally are balanced when planning session length and number. Providers articulated concerns that sometimes more therapy could interfere with therapy progress or take time away from other health care needs, such as breathing treatments.
“Unfortunately there’s a sense of, “More is better. The more therapy I’m able to provide, the better my child will do.” [However], there’s a point at which a particular young child doesn’t benefit from additional services. They just end up exhausted.” –Early Intervention Director
Participants noted that there was a tradeoff that had to be addressed between the time and effort required for therapy and how that time and effort could be devoted to other patient health needs and family priorities, within the larger patient-family context. For example, participants described prioritizing which therapy to pursue amongst a child’s other health care needs.
“It becomes difficult when [families] get a lot of medical information and to-do items and are trying to figure out where to prioritize [and] deal with more acute [care], and [decide] what can wait?” –Neurodevelopmental Behavioral Physician
Caregivers reported struggling to balance the benefits of therapy with other household priorities, caregivers’ employment, and patients’ schooling. Travel time and inconvenient hours to obtain therapy became barriers that factored heavily into the decision of whether or not to pursue therapy given the broader patient-family context, including a patient’s broader medical needs and educational goals.
“One of the biggest barriers is [my son]’s ability to sit in his chair. He has about a two-hour window of being able to be comfortable, and given that these therapy centers are an hour-drive away, he’s miserable. He’s tired out by the time he gets there.” –Mother 6
Experiences obtaining therapy
Theme 1: Transitioning from EI to school-based programs at age 3
Most patients in our study reported obtaining the majority if not all of their therapy through EI via the Individuals with Disabilities Education Act (IDEA) Part C until about three years of age, followed by school-based programs via IDEA Part B. Generally, caregivers perceived EI to be efficient, timely, and patient and family-centered.
“The birth-to-three program has been excellent with helping us get auditory and visual therapists. They were very good to work with, very proactive, and addressed our needs well . . . [and] it’s all in our house.” –Father 1
Providers agreed but note that funding shortfalls could make meeting community demands challenging.
While EI was thought to prescribe a level of therapy to achieve overall functioning, school-based therapy was perceived to utilize a less comprehensive but legal standard of determining the level of therapy necessary for education. As a result, a mismatch sometimes existed between caregiver and referring providers’ expectations that patients will receive therapy at school to meet all of their functional needs versus the school’s approach to provide therapy sufficient to support educational progress (Table 3).
Barriers to Obtaining Therapy Services for Children with Medical Complexity, by Theme
Barriers to Obtaining Therapy Services for Children with Medical Complexity, by Theme
“There are just kids who need a level of therapy that the school district can’t provide. There’s a difference between educationally relevant therapy and what we call medically relevant.”- Early Education Director
If caregivers did not supplement this mismatch with additional community-based therapy, there is a perceived “drop-off” in care and/or conflict with the school.
“I see it all the time where feeding [therapy] just drops off [when transitioning to school]. So if a child doesn’t have access to private [community-based] services, they lose feeding [therapy]. That’s not under the school educational umbrella.” –Speech therapist
3.2.2.1Subtheme 1: Barriers to obtaining school- and community-based therapy: Participants also identified variation in obtaining high-quality school-based therapy. Strained budgets and workforce shortages were thought to limit availability of school-based therapy. Participants expressed concern regarding how well caregivers who have limited English proficiency, health literacy, or self-efficacy could navigate the therapy “system”.
“The parents have to call the school district and sometimes they hear back, sometimes they don’t. If it is summertime, then forget about it; and every school district is so different in the quality of care that they provide.” –Primary care physician, urban area
Participants viewed community-based therapy, such as free-standing, typically private therapy clinics, as an important source of therapy, especially during summer because, by report, most patients did not continue school-based therapy in summer months. The impetus to obtain therapy through school was less intense for patients who could obtain community-based therapy. Providers articulated concern that this created a disparity for patients who could not easily obtain community-based therapy.
“I do have a couple of families who seek out private therapy. Usually, it’s because they’re not pleased with the school services or the child won’t receive services during the summer. My experience is that they’re wonderful, if you can get in them and if you can afford them.” –Primary care physician, urban area
3.2.2.2Subtheme 2: Barriers to insurance coverage of therapy: Participants identified a range of barriers to obtaining therapy for patients that lead to perceived inequitable availability of services, depending on a patient’s insurance source. Continuing or adding therapy coverage for patients with progressive disease could be problematic as some insurance companies require that a patient demonstrate skill improvement.
“Insurance wants to see progress and maintaining is frequently not really regarded as progress.” –Physical therapist
Insurance coverage of community-based therapy also was not always aligned with the referral recommendations of therapy. Insurers do not always distinguish between therapies needed for common pediatric injuries compared to what CMC might need for chronic disabilities.
“There’s so many insurance companies that don’t see the difference between a brain injury and a sprained ankle.” –Physical therapist
Lastly, coverage of community-based therapy could be limited by annual caps which were not always sufficient for chronic complex disease. Families then prioritized which therapy to use to achieve desired gains and/or incur out-of-pocket costs.
“It was difficult trying to get [insurance] to approve [my son] for so many visits a year, because at first they wanted to give him 12 [sessions], and that’s just not enough because he’s such a complex kid.”- Mother 14
Theme 3: Availability of an adequately trained pediatric therapy workforce
3.2.3.1Subtheme 1: Structural barriers affecting the pediatric therapy workforce: Additional credentialing that may be expected or required to provide pediatric therapy paired with comparatively lower salary was perceived to discourage entry into the pediatric therapy workforce.
“Our system does not reimburse people who work with children [as well as] people who choose to work with adults. PTs coming out of school make so much more money going into sports medicine than going into pediatrics.” –Early Intervention Director
Specifically, regulations requiring additional pediatric credentialing were reported to discourage workforce entry. Differences in pay between nine-month school contracts and year-long job salaries was believed to also impact workforce participation. Lastly, funding shortfalls for government-sponsored therapy in EI and schools seemed to play a role in driving workforce availability. See Table 3 for additional quotes.
3.2.3.2Subtheme 2: Barriers to finding providers experienced in caring for CMC: Even if therapy was covered by a child’s insurance, caregivers needed to find providers experienced in serving CMC. Shortages of pediatric-trained therapy providers impacted continuity, timeliness, and efficiency of care. Frequent turnover in government-sponsored programs was noted whereas waitlists for community-based clinics could be long, potentially delaying care and limiting provider choice.
“[My daughter] does [swim-based physical therapy] six weeks on/off . . . because they have to get everybody a chance to do it. So you get put back on the waiting list after your six weeks.” –Mother 15
Caregivers identified that continuity with a therapy provider enabled them to get to know their child’s unique needs, which was important for safe, patient-centered care and realistic goal setting.
“As [school therapists] got more familiar with [my daughter], they had more appropriate goals.” –Mother 13
However, since CMC were typically of lower incidence within any given school district, hiring providers with sufficient training could be challenging.
Discussion
This qualitative analysis provided rich insights into the intricacies surrounding the provision of rehabilitative services for medically complex children. This study revealed difficulties some families and providers experienced in determining the suitability of therapy for CMC within a broader patient-familial context, a perceived drop-off in obtaining therapy when transitioning from EI to school-based services, inconsistent access to community-based therapy, barriers to insurance coverage of therapy, and challenges to maintaining a robust workforce. This research echoes previous work describing the difficulties providers and families face determining how to optimize therapy for a given child’s goals to improve function and participation [4, 19–22]. This study adds a detailed understanding of these challenges for CMC that can be used to inform future research and policy opportunities.
Among study participants, patients appeared to be utilizing therapy through whatever combination of government-sponsored and private community-based therapy that caregivers could both access and prioritize among their children’s other medical and educational objectives along with family obligations. Both providers and caregivers identified the need to balance the potential for functional gains and improvement in life’s participation with the uncertainty of how to dose therapy for their patients and children. Currently, the evidence base for therapy does not necessarily support a dose-response (i.e. “more is better”) approach for all patients [4, 23–28]. Without evidence-based measures in such a heterogeneous population that can distinguish between improvement, maintenance, and regression of skills, this ambiguity regarding what is “enough” therapy will remain a central challenge –both from an over and underutilization standpoint. Ideally, such measures could be used by family caregivers and providers to help weigh the amount of therapy to pursue, given its time, effort, and investment to improve function and participation. Work done to guide therapy services for cerebral palsy is an example of evidence-based work that can inform therapy use for a heterogeneous population [29]. Goal attainment scaling is a method to develop individualized and measurable treatment goals, which may help address some of our findings if more broadly applied in pediatrics [30, 31]. Used initially in mental health care delivery and expanded to rehabilitation medicine and other fields, this approach allows for incorporation of different goal domains and can be used in conjunction with other more conventional assessments.
The study findings also suggest a perceived divergence in the level of therapy received at three years of age by some patients due to the age boundaries currently set by IDEA Parts B and C [20, 28]. Funding shortfalls for both EI and school-based services were perceived by our participants to strain providers and affect the continuity and family-centered experience of therapy. Our respondents highlighted two key barriers for therapists working within the school system: 1) requirements for therapists to obtain additional credentialing before being allowed to provide therapy care to children in the school setting; and 2) lower pay in the school-setting compared to private clinics. Together, expecting higher credentials for lower pay may be creating unintended barriers to workforce entry for school-based pediatric providers. These barriers are particularly troublesome given the overall projected shortages in the PT and OT workforce in the coming years [32, 33]. Even if legally obliged, schools realistically may not be able to provide sufficient services to meet patient goals with the available workforce. Examination of the benefits and burdens of additional school credentialing should be considered in order to meet the needs of the growing population of CMC.
Health policies and advocacy to expand the home-based, family-centered EI service model beyond three years of age deserve continued consideration. However, informing caregivers and referring providers of the education system’s limited obligation to provide services to the level of educational participation may also be needed. This improvement would serve both to prevent undue conflict and to enable creation of care plans that focus on provision of community-based services, which may be more equipped to meet the unique and intensive needs of CMC.
Through this study, we also identified that participants reported that the use of community-based services was heavily dependent on insurance coverage and a caregiver’s ability to navigate insurance barriers (e.g. annual caps). The perceived disparity in obtaining community-based therapy by some of our participants is particularly problematic since three years of age is typically when function greatly expands to higher developmental skills and after which there are an increasing scope of skills for children to master. If the potential for functional gains after age three is impacted by divergent access to care, then patients who obtain therapy outside of the overwhelmed school systems may be getting a higher level of care leading to inequitable outcomes, as suggested by previous work [13].
Future research should investigate the discrepancy between prescribed therapy service levels compared to actual therapy use, to better quantify the insurance coverage gap in larger samples. Understanding how public versus private payer status impacts hours of therapy use and therapy source (i.e., school versus community-based) is also needed. Such data would help to quantify large insurance gaps and identify impacted populations, leading to potential policy coverage changes. This would help address our findings that insurance companies appear to approve therapy session numbers using rubrics developed to address the needs of otherwise healthy children with acute injuries or isolated developmental delays, which may not meet the level of need for CMC over time. We suspect that most insurance companies currently lack an incentive to revise their rubrics to expand these costly therapy services for patients, especially in employer-based contracting where CMC may be a small proportion of the covered population. So, in conjunction with the proposed research areas, we suggest that more advocacy is needed to address this gap between typical insurance therapy contracts and actual therapy needs for patients with more complex medical conditions.
Lastly, pediatric rehabilitation specialists should consider community-based participatory activities as a means to bridge gaps in services while meeting patients’ needs. Examples include recreational activities (e.g. adaptive sports, camps), continuing education, and improving the evidence for non-traditional therapy (e.g. hippotherapy) to encourage insurance to cover these services.
Study limitations
Qualitative studies provide rich contextual data to identify new research and policy questions; however, they are limited in representativeness. In our case, study data were collected from a single institution with English-speaking families and –despite our efforts at purposeful sampling –most participants were majority Non-Hispanic White. The analysis did not provide the opportunity to weigh the relative importance of themes, which should be considered in future work.
Conclusions
Suitable use of therapy for CMC appears to be reliant on the ability to dose therapy effectively within the patient-familial context, which is influenced by barriers to obtaining services. There are perceived challenges in accessing therapy both after age three years and in community-based clinical settings. Barriers to maintaining a workforce for children is an area of concern. Future work should consider investing in a means to measure the benefit of therapy to improve function and participation within a family context, expanding the home-based EI service model beyond 3 years of age, educating both caregivers and providers about the limits of school-based therapy, and expanding access to both private clinic and recreational community-based therapy.
Footnotes
Acknowledgments
This study was supported by the Seattle Children’s Research Institute’s Center for Child Health, Behavior and Development Hearst Foundation Fellowship Award. Dr. Fuentes’ time was supported by a NICHD grant 4K12HD001097-20. Dr. Desai’s time was supported by the Agency for Healthcare Research and Quality, grant K08 HS024299 (PI Desai).
Conflict of interest
The authors have no conflicts of interest to report.
Appendix 1
Caregiver and Provider Key Informant Interview Structure and Sample Questions
Therapy Service Specific Questions
1.
What is your understanding of why your child receives therapy services?
2.
What is it like to find and keep providers for this therapy service? To schedule the therapy service?
3.
What choice did you have in choosing which provider and/or clinic worked with your child?
4.
What would be the ideal timing to receive the therapy service (e.g., day of the week or time of day)?
5.
How is the therapy service paid for?
6.
Is there anything else you would like us to know about how hard or easy it is for you to get the therapy service for your child?
7.
How/why do you think this therapy service helps your child’s health and/or helps his/her achieve his/her health goals? How does it affect your family?
8.
What makes this therapy service “good quality”? What makes the provider of this therapy service (i.e., therapist) “good” at his/her job?
9.
How satisfied are you with the overall quality of the therapy service provided?
10.
How well do the providers of the therapy service communicate with you about changes to the therapy service? What documentation do you receive?
11.
If you have questions, how are these questions answered? Did you find the answers helpful?
12.
How well does the provider(s) of the therapy service communicate with: . . . each other? . . . your primary care provider? . . . your specialty providers (e.g., cardiologist)? . . . your child’s school?
General Questions
13.
Has your child ever had therapy services recommended to you that have not been covered by your insurance? If so, what were they?
14.
Are there therapy services your child receives that you think she/he doesn’t need? If yes, which and why?
15.
Are there therapy services your child doesn’t receive that you think she/he needs? If yes, which and why?
16.
Have therapy services ever not been available because of where you lived?
17.
Do you have anyone help you get therapy services or supplies for your child (e.g., case manager or care coordinator)?
Family Impact/Support
18.
What are the ways in which these therapy services have affected: . . . your family’s daily routine? . . . your family’s finances?
19.
How do providers respect your family’s values/culture/traditions?
Overview
20.
Overall, if you could change anything about your and your child’s experiences receiving these therapy services, what would it be (if anything)?
21.
Is there anything else we should know about your and your child’s experiences receiving these therapy services?
Therapy Service Provision
1.
What types of therapy services does your organization/group/department provide to this patient population?
2.
How do you determine which therapy services to offer? For clinicians, how is it decided whether a patient needs a therapy service?
3.
What government agency or regulatory body provides oversight to the therapy services you provide?
4.
What are your different payers (sources of revenue) and how do you receive payment?
5.
What are the eligibility requirements that determine which patient/caregiver can use your therapy services (e.g., income, insurance, etc.)?
6.
What are the mechanisms by which you receive referrals for your therapy services?
7.
What sorts of options do patients/caregivers have in choosing your/an agency/organization in their community?
8.
What is it like for a patient/caregiver to establish therapy services? Maintain ongoing provision of therapy services?
Communication/Documentation
9.
What sort of documentation is created when therapy services are provided?
10.
How do you communicate with and receive communication from patients5 other providers and school?
11.
How do you accommodate patients/caregivers with limited English proficiency (LEP)?...patient/caregiver values/culture/traditions?
Overview
12.
Overall, what do you think your group/organization/department does well in providing care for this patient population?
13.
Overall, if you could prioritize changing anything about providing therapy to this patient population, what would that be and why?