Access to Multidisciplinary Care for Pediatric Weight Management: Exploring Perspectives of the Health Care Team within Canada and the United States

Abstract

Background:

In Canada and the United States, most families referred for pediatric weight management services do not start treatment. Of families who initiate care, many discontinue before the program ends. Parents and youth have reported difficulties in accessing services as an important barrier to starting or completing programming. The purpose of this study was to understand barriers and identify potential solutions related to access to care from the perspective of health care team members from Canada and the United States.

Methods:

Qualitative description method guided the study design. Participants were health care team members, purposefully recruited through Canadian and US-based pediatric weight management program registries. Telephone interviews were conducted with participants between February and May 2017. Interviews were transcribed verbatim and analyzed using content analysis.

Results:

Eighteen individuals from 16 sites participated (n = 8 Canada, n = 8 United States). Access barriers and potential solutions were related to: (1) referral and eligibility, (2) wait lists and program capacity, (3) logistics and costs, and (4) stigma and weight bias. Barriers were similar between Canadian and US sites, with the exception of cost-related barriers.

Conclusions:

Health care providers from Canada and the United States reported multiple societal, organizational, service, and family-level barriers to accessing multidisciplinary pediatric weight management care. Proposed solutions suggest that service providers can play a key role alongside families to improve access to appropriate care. Further research is needed to demonstrate the feasibility and effectiveness of proposed solutions.

Introduction

Agrowing body of research examines factors that affect treatment initiation and continuation in pediatric weight management programming.^1–6 Approximately 60% of families referred to multidisciplinary pediatric weight management clinics do not initiate treatment.^5,7 Of those families that do initiate programming, 4%–83% (mean 41%) may discontinue before program completion.^6,8

Parents and youth have provided important insights into barriers to participating in multidisciplinary weight management programs. These include logistical barriers and scheduling conflicts, unmet needs, costs associated with program attendance, family readiness, clinic environment, and program content.^3,8–10 A 2009 survey of 21 families who discontinued a pediatric weight management program found that logistical barriers (e.g., times appointments are offered, distance to clinic) were the most common reason for stopping.⁴ Similarly, in a qualitative study on caregiver recommendations to enhance enrollment in multidisciplinary pediatric weight management programs, the most frequent recommendations related to improving accessibility of programs.¹⁰

Access to health care services is a key domain in the assessment of health care or health system quality,¹¹ along with service relevance, effectiveness, equity, and equality.^12,13 Access to health care services is a complex phenomenon that involves the availability of services (“having access”) and the ability to use them (“gaining access”).¹³ Understanding accessibility to health care services is important to inform the design, improvement, and future direction of services.¹¹

Although the understanding of barriers to accessing pediatric weight management services is improving, key gaps remain. Importantly, insights have been sought from parents and youth,^3,4,10 but few studies have examined the perspectives of the health care team (e.g., health care providers, program directors, intake coordinators).^14,15 Health care team members are in a unique position to reflect on organizational and service-related barriers and may perceive different barriers to accessing care than patients and families. Furthermore, research on health care team perspectives has not examined similarities and differences related to accessing services in Canada and the United States.^15,16 Given these gaps and the importance of accessibility to care for families, health care equity, and quality, the purpose of this study was to understand barriers and identify potential solutions to improve access to care from the perspective of health care team members of pediatric weight management programs in Canada and the United States.

Methods

This qualitative description study¹⁷ was part of a larger project designed to understand the development and evolution of multidisciplinary pediatric weight management centers in Canada and the United States. Participants were health care providers (e.g., dietitian, nurse, physician, physiotherapist) and other team members (e.g., intake coordinator) of multidisciplinary pediatric weight management centers in Canada and the United States. Participants were recruited purposefully through collaboration with two national pediatric weight management program registry-based studies; the Canadian Pediatric Weight Management Registry (CANPWR)¹⁸ and the US-based Pediatric Obesity Weight Evaluation Registry (POWER).¹⁹ In Canada, study information was disseminated through all (n = 10) CANPWR sites and through the Obesity Canada e-newsletter. In the United States, information about the study was shared through a webinar attended by POWER-affiliated sites and by an e-mail shared within the POWER network of sites (n = 32).

Individuals who received study information were affiliated with multidisciplinary and/or multicomponent pediatric weight management centers, most of which were based in urban tertiary care settings. Canadian and US-based programs were not matched beyond being part of national registries. Participating sites served a range of ages, with the majority providing care for children from 2 years old to young adulthood (early 20s). Program eligibility was generally based on BMI percentiles, thresholds for overweight/obesity and presence of comorbidities.

After obtaining informed consent, semistructured telephone interviews were conducted. The interview guide was reviewed for content and terminology by the Public Engagement Committee of Obesity Canada, which is composed of members of the public who work to inform Obesity Canada-relevant policies and activities. The same research assistant conducted all the interviews. Open-ended, follow-up, and probing questions were used to elicit participants' perspectives on several issues, including program development (e.g., Tell us about why this program was started? Who was involved in developing your program?) and challenges and successes experienced (e.g., What are the benefits of having a program like this available? Do you think there are any negative implications? What has changed (most) about your program since it started?). Interviews lasted ∼1 hour and were digitally recorded and transcribed verbatim. The interviewer and interviewees reviewed transcripts to ensure accuracy. The study was approved by the Health Research Ethics Board at the University of Manitoba (HS190003).

Data Analysis

Content analysis was used, which begins with defining the data relevant to the study purpose.²⁰ An initial coding scheme was inductively developed (by R.L.W., K.W., and G.H.B.) after analyzing 25% of the raw data, and refined through team discussion. Two team members (G.H.B. and K.W.) then independently reanalyzed the entire data set using the refined coding scheme, assigning descriptive codes to text segments. Codes were then grouped into broad categories related to barriers and proposed solutions for accessing pediatric weight management services and text segments within categories were compared. Categories were then grouped into higher-level categories. Transcripts were identified as originating from a Canadian or US-based site and the same coding scheme was applied to all; however, barriers were considered separately by country to identify similarities and differences. Results were presented back to the research team for additional insights. For descriptive purposes, frequencies were calculated for each barrier based on the total number of Canadian and US sites that indicated the barrier. To ensure trustworthiness, an audit trail of codes and reflections was maintained.

Results

Eighteen health care team members from 16 sites (n = 8 Canada, n = 8 United States) participated. Participants self-identified their team role(s). Half (n = 9) identified within the following roles: dietitian, exercise specialist, nurse, outreach coordinator, program coordinator/manager, psychologist, and research assistant, whereas the other half identified themselves as physicians, program directors, and/or researchers. Most interviews were with one team member (n = 14); two interviews took place with two individuals by participant choice. Four categories of barriers and potential solutions to accessing services emerged from the data: referral and eligibility, wait lists and program capacity, logistics and costs, and stigma and weight bias. Representative quotes of barriers and proposed solutions are presented in Tables 1 and 2.

Table 1.

Categories of Perceived Barriers to Accessing Pediatric Weight Management Services

Category	Examples	Quotes
Referral and eligibility	Referral	…right now we require a referral from a physician, so then we started to think well what about all those kids who don't have a family doctor, we know we're not getting them. [Canadian site]
	Eligibility	…they have to be literate in English…So that's a limiting factor. They, the child has to be between 6 and 17 years old, so if I get a referral for a 4-year-old … I don't have anything for them… [Canadian site]
	Eligibility	And we, I aim to get everybody in monthly… my Spanish speaking population is often three months if not longer before I can get a spot where I can have an interpreter. [US site]
Wait lists and program capacity	Providing timely appointments	And you know we have wanted to expand on different occasions and currently I'm sort of struggling through that also, how can we get this backlog from nine months to something more reasonable. [US site]
	Missed appointments	… we find it a little bit challenging when kids get booked in especially for the new three-hour assessment and don't show up and then we have [many] kids waiting. [Canadian site]
	Being “at capacity”	There's no way I can meet the demand. [US site]
Logistics and costs	Program location, time needed for travel	But it is a very large geographic area, so people have come from pretty far to our clinic sometimes and transportation is an issue for many, so they have to take public transportation for a very long time or sit in the notorious [City] traffic to get here as well. [US site]
	Program hours, other commitments	…so I do think for our clinic it's hard because by a hospital we're running Monday to Friday clinics that are sort of in working hours, so this is forcing families to take time out of work and its forcing kids to come out of school. [Canadian site]
	Cost to families	Parking, finances are a problem…[Canadian site]
	Program funding	Yeah, we're about at our limit with the, the staff we have so…Beyond our limit but yeah we're, it's just resources so…[Canadian site]
	Specific to US programs: Reimbursement insurance, billing	I think there, it's still a challenge to have all of the services paid for I think in the grand scheme of things …I think a lot of places might be dependent on patient billing alone. And so it does and, and insurance companies don't really have a way of, of reimbursing based on all of the provider services, most of the time it's based on physician billing only and so the psychologist part sometimes isn't compensated for and the dietitian sometimes is and sometimes isn't… [US site]
Stigma and weight bias	Past experiences of stigma within health care system	Perhaps having felt discriminated you know against in the past with regard to weight issues, might leave them to not want to re-engage and trust again [Canadian site]
	Past experiences of stigma within health care system	Or it's the way that they, another health practitioner has maybe brought it up to them in the past that hasn't been completely appropriate … [Canadian site]
	Stigma associated with attending weight management programs	I know particularly for our teenagers you know there is, oh I have to go to fat camp or you know I have to go to this because I'm fat, you know like a lot of them say that and I think that we make a very concerted effort to try to make it fun and try to make it supportive and try to take the stress out of it, but I don't, I think, I don't know that we are as successful as, as I would like to see.[US site]

Table 2.

Proposed Solutions to Accessing Pediatric Weight Management Services

Category	Recommendation	Quotes
Referral and eligibility	Expand referral source	So we're starting to pilot with some public health units, so that public health nurses can refer. [Canadian site]
Referral and eligibility	Optimize use of interpreter services	We have interpreter service ranging from a person who comes into the visit to …kind of like a Skype setup, to even phone, so I've had interpreter services… [US site]
Wait lists and program capacity	Refining clinical focus	I'd also look at maybe defining our clinical focus a little bit better as well as I mentioned there's some kids that are you know in this obesity range but very healthy…. But then we get a referral you know the following day for a kid with dyslipidemia, at risk for type 2 diabetes, strong mental health conditions and now they're you know on the waiting list…So either narrowing down the population that we are servicing or increasing our ability to see more patients. [Canadian site]
	Scheduling strategies and reminder calls	Yeah, I open up my appointments like only three months in advance ‘cause I don't want the no-show, I find if I open them up too far in advance you know they'll all book out. [US site]
		And we also book the intakes and feedbacks very close to their next age group that's coming up… [Canadian site]
		…so we started to you know do, making sure we do reminder calls, … requesting it upfront with families that they give us notice if they're no-showing or going to cancel. [Canadian site]
	Case management	And I see them for every other medical visit that they would have, so its opened up a lot of opportunity for the docs to see more kids as well by me taking half of their follow-ups then we're able to shorten our wait lists… lots of just like case management…[Canadian site]
Logistics and costs	Evening/weekend programming	…one of the commitments we've made is to make this program accessible to families and access, accessible means at a time that works best for them, so that's outside of school hours and work hours… [Canadian site]
	Home visits	… we did start doing some home visits to some of those families that couldn't make it into our clinic. [Canadian site]
	Community “satellite” programming and partnerships	…our treatment which is group-based has been moved to out in the community, so we are renting space in the city of [city name] and we're hoping to formalize more of a relationship or partnership with them. So we deliver our, our group treatment out in the community…You know hoping that by doing so we are eliminating the costs associated with you know a hospital-based program … [Canadian site]
	Transportation support	Lack of transportation is a big barrier, although [State] Medicaid offers Medicaid transportation. [US site]
	Free parking	We've kind of come up with a plan to be able to offer some of these family's money to cover the cost of parking but we haven't quite got that in place yet. [Canadian site]
Stigma and weight bias	Not using the word “obesity”; changing program names	We actually don't, we, we label ourselves not a weight loss clinic…We are a health and wellness clinic that focuses on the behaviour changes, the lifestyle modifications that improve health overall, not just weight. [Canadian site]
	Not using the word “obesity”; changing program names	What has changed the most? We changed our name. [US site]
	Sensitive nonjudgmental family-centered care	And one needs to be aware of how you practice to make sure you don't add to that (stigma)… So I think if you're providing sensitive care, meeting families where they're at and presenting this that this is healthy eating for everyone regardless of their age, or how much they weigh…It's, and then it takes away some of that stigma. … [US site]

Referral and Eligibility

Participants from seven sites (44%; n = 4 Canada, n = 3 United States) discussed challenges related to the referral process and eligibility criteria. Two participants identified that a physician referral is required, so families without access to a physician could not access services. Eligibility criteria related to age or level of comorbidity were also discussed as barriers. Specifically, participants indicated that children outside of the age range served by their site, or not presenting with the level of comorbidity required by eligibility criteria would not be offered admission to the program. In addition, some participants indicated that provision of services predominantly in English was a barrier to those who wanted or needed to access services in other languages.

Potential solutions

Potential solutions to address referral issues included allowing other health care professionals to refer children. One participant described a pilot project where public health nurses were allowed to provide referrals to families. Regarding age or presence of comorbidities, some participants indicated that their site had broadened criteria over the years. Participants discussed the use of interpreter services and the benefit of having multilingual staff within their program to overcome language barriers. One participant described a range of ways they accessed interpreter services, including in-person, over the phone, or through online technology.

Wait Lists and Program Capacity

Participants from eight programs (50%; n = 5 Canada, n = 3 United States) indicated that wait lists and limited program capacity were barriers to accessing services. Participants discussed difficulties providing timely appointments for families, especially for initial assessments. Limited resources (e.g., funding, space, staffing) were seen to affect timing of access. For one US site, lack of personnel to manage the wait list compounded administrative challenges. This was managed by limiting children with less medical complexity to two visits to be able to offer appointments to families on the wait list more readily. A comprehensive multidisciplinary assessment was frequently described as a program strength by participants; however, the resources needed to conduct these often lengthy assessments, and the challenges presented when assessments went unattended were noted.

Potential solutions

To address these barriers, some participants suggested refining eligibility criteria (e.g., focus on children and youth presenting with more medical issues). As noted earlier, however, narrow eligibility criteria was considered a barrier by others. Others expressed a desire to expand the program team, but acknowledged funding as a limitation. Some found that with experience, their team naturally became more efficient. Others discussed triaging systems and intensive team-intake appointments to ensure families were ready and wanting to proceed with treatment before starting the program to reduce nonattendance. Scheduling strategies, including reminder phone calls, were discussed as ways to improve attendance at initial assessments. One participant discussed case management as a strategy, and having nonphysician team members conduct the follow-up visits to allow the physician to see more families.

Logistics and Costs

Participants from all 16 sites mentioned barriers related to logistics and costs of accessing services. Participants from 10 sites (n = 7 Canada, n = 3 United States) discussed logistical challenges independent of costs. As sites were primarily located in urban tertiary care settings, participants identified location as a barrier for families, especially those living in rural or remote communities. The distance of the program from home, travel time, and time spent within appointments were recognized as barriers to initial and follow-up appointments. Beyond the logistical challenges, direct costs to families were identified. These included transportation fees (e.g., transit fare, money for gas, parking), babysitting fees for other children, and costs associated with missed work. It was recognized that these costs would disproportionately impact families with less financial resources. Competing priorities such as school and work (most programs offered daytime, weekday appointments) and other medical appointments were acknowledged as challenges faced by families. Space and funding limitations prevented expansion of the space and the health care team. This was perceived to limit access to programming and limit the range of professional expertise available.

Difficulties with reimbursement related to limited insurance coverage was a topic unique to US sites and mentioned by all US participants. Participants felt that these challenges prevented sites from offering different models of care (e.g., group programming), prevented expansion into community spaces to provide services closer to home, and limited access to certain professionals within the program (e.g., a dietitian) due to lack of/limited reimbursement from insurance.

Potential solutions

In terms of solutions, several participants mentioned the potential of providing evening and weekend programming as a way to improve access. One site that managed to successfully implement this solution did note some negative consequences on staff work/life satisfaction. Multiple examples were provided regarding how some sites tried to address geography and transportation issues, including home visits, videoconferencing, and renting space in a community facility (Canadian sites only), recognizing that solutions such as these could address both geographical and cost-related issues. Medicaid-supported transportation was discussed as a possibility for some families in the United States. One site had developed, but not yet implemented, a program to pay for parking for families. Few actionable/successfully implemented solutions were identified regarding the US-specific concerns related to lack of reimbursement and insurance coverage. At one site, however, ∼50% of participants attended for free through the hospital's employee health program.

Stigma and Weight Bias

All participants acknowledged the negative impact of weight bias and stigma on families, and more than half of the participants (n = 4 Canada, n = 5 United States) provided responses specifically linking stigma and weight bias to access. Some participants felt that past negative weight-related interactions with health care providers may have left families feeling guilty or reduced families' trust and willingness to re-engage with the health care system. Others identified the stigmatizing effect of being referred to or attending a weight management program. The program/site name (e.g., whether it included the word “weight” or “obesity”) was seen as a potentially stigmatizing factor that may impact whether a family would access services.

Potential solutions

Potential solutions fell into three main topics—the use of the word “obesity,” the care approach, and program focus (i.e., “wellness, not weight”). With respect to the word “obesity,” several participants indicated that they changed their program name. This was done to reduce the stigma of attending an “obesity” program, and sometimes to signal a change of approach within the program itself. A name change was also discussed as a way to improve the overall atmosphere, promoting a more welcoming environment. In one instance, families helped to rename the program. Importantly, family-centered and nonjudgmental approaches to care were commonly discussed as core values of the sites within this study. Participants commonly linked provision of care based on these values with providing nonstigmatizing care.

Discussion

This study explored access to pediatric weight management services from the perspectives of Canadian and US-based health care team members. Participants identified barriers to accessing services spanning four categories: referral and eligibility, wait lists and program capacity, logistics and costs, and stigma and weight bias. The categories of referral and eligibility, and stigma and weight bias have received relatively less attention in the literature to date as barriers to accessing pediatric weight management services. Participants provided a number of potential solutions within each category for consideration.

Barriers and potential solutions reported by participants in Canada and United States were similar with the exception of cost-related barriers. Although participants from both countries discussed the financial implications of accessing weight management services, US participants tended to focus on reimbursement and insurance issues. Participants had few concrete solutions for this complex issue. Rather, many expressed a desire for comprehensive coverage of services. Payment for pediatric weight management services has been an area of interest for the US-based Improving Access and Systems of Care for Evidence-Based Childhood Obesity Treatment Workgroup.¹⁶ This group has recently produced recommendations on payment and care delivery models, payer systems, and advocacy.¹⁶ Although this workgroup was not specifically mentioned by participants, some of the recommended care delivery models were provided as examples of desired scenarios by US participants (e.g., integrating with community-based facilities). Employee health plans were also a recommended payer system option from the workgroup, which was discussed by one participant as a common way families accessed their services.

The barriers related to logistics and cost identified in our study were consistent with what families have previously shared as reasons for discontinuing care.^3,4,6,8 Participant's recommendations to improve access were also congruent with those from families in past research^10,21 demonstrating good alignment between health care team member and family member perspectives on access. Key messages from families from past study include broadening appointment times, bringing services closer to families home, paying for transportation or parking,^10,18 providing childcare, and limiting the attendance burden.¹⁰ One US-based study that examined health care provider's perspectives also identified treatment times, transportation issues, and issues with insurance as barriers affecting access to care.¹⁵ Interestingly, the higher rates of initial and continued attendance observed in clinics and programs using scheduling systems and reminder calls¹⁵ provide empirical evidence to support participants' recommendations of using these two strategies to improve accessibility to weight management services.

There has been less discussion to date on referral and eligibility, and stigma and weight bias as barriers to accessing multidisciplinary weight management programming. These are important issues that affect access, equity,¹³ and quality¹¹ of health care. With respect to referral and eligibility, participants highlight the benefit of other professions (e.g., public health nurses) as eligible referral sources, and broader use of technology with interpreter services as potential solutions. Regarding weight bias, participants identified that past negative interactions within the health care system may discourage families from accessing care in the future. Studies with adults have demonstrated a reluctance of people living with obesity to access certain health care services.^22–24 Implicit/explicit negative opinions about people living with obesity^25–27 can contribute to negative interactions and poorer quality of care (as reviewed in Phelan et al.²⁵). It is important for health care providers in all settings, including weight management programs, to engage in reflexive practice and consider the impact of personal attitudes and beliefs on individuals and on access to appropriate and non-stigmatizing health care.²⁸

A reluctance to associate with “obesity” services due to negative connotations and further stigmatization is another important consideration. Although participants in this study and others identify the importance of relationships,¹⁴ and sensitive nonjudgmental comprehensive care,²⁹ several participants spoke of stigma associated with weight-focused health care. Participants not only spoke about how programs have changed their name, but some also spoke of a shift away from weight-focused toward wellness-focused care. A shift away from weight-focused care may require going beyond program content, however, with re-evaluation of intake criteria, assessment tools, and outcome measures. In their study with health care providers, Skelton et al. discussed the problematic contradiction of programming that asks families to focus on health/behaviors but regularly weighs children and rewards weight loss.¹⁴ It would be instructive to envision a “weight neutral” approach³⁰ to the multidisciplinary care of children and youth. This remains an important topic for future research and discussion.

Our study has several limitations that need to be acknowledged. First, our qualitative sample may not be representative of the pediatric weight management clinics in Canada and the United States. Although 80% of Canadian programs involved in the national registry at the time of the study were included, the US sample represents a smaller percentage (25%) of US registry. Furthermore, we did not match the Canadian and US sites, beyond the criterion that they were participants of national pediatric weight management registries. Therefore, the applicability of our findings will depend on the degree of similarity between study participants and settings (including population served) and other programs and settings. Also, our results are limited to the perspectives of members of multidisciplinary/multicomponent teams, who may be well positioned to identify program- or systems-level barriers, but less aware of access barriers that exist further upstream, or at the individual/family level. For example, participants did not identify barriers to accessing care for children and youth living with differing abilities, which has been reported in previous study.^31,32 This may be that participating programs were well equipped to accommodate differing abilities, or that earlier barriers exist that prevent access to multidisciplinary services.

Conclusion

There are multiple barriers to accessing multidisciplinary pediatric weight management services that are largely similar between Canada and the United States, with the exception of insurance and reimbursement issues. Multidisciplinary weight management health care team members acknowledged the negative impact of weight bias and stigma related to accessing health services. Further effort and research is needed in this area. Strategies to improve accessibility can be informed by the findings of this study, from previous research with families and through local family engagement efforts. National registries provide a platform to design and empirically test novel treatment approaches and system changes. Health care team members are in a unique position to examine the focus and accessibility of their program to ensure that safe, relevant, and effective care is available for those who seek it.

Footnotes

Acknowledgement

The authors acknowledge the study participants for taking part in this project. We also acknowledge CANPWR and POWER leadership for assistance with participant recruitment. Thank you to the Obesity Canada Public Engagement Committee members who provided review and input into the interview guide.

This study was supported by an Operating Grant from the Children's Hospital Research Institute of Manitoba. GDCB was supported by an Alberta Health Services Chair in Obesity Research.

Author Disclosure Statement

No competing financial interests exist.

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