Abstract
Introduction:
Adolescent access to quality healthcare is key to prevention and early intervention for health risk behaviors. This paper provides a healthcare provider perspective on barriers and facilitators to youth accessing care.
Methods:
Five focus groups were conducted from November to December 2020 with providers from a variety of healthcare settings. Participants were asked to describe their respective adolescent patient populations, adolescent-specific health concerns, and organizational accommodations specific for youth services. Transcripts were analyzed using Inductive Thematic Analysis and themes were grouped using a social-ecological framework.
Results:
At an individual level, providers noted that an adolescent’s knowledge and ability to navigate services varied greatly across settings. Providers identified provider trust and parent/guardian support as key interpersonal factors that support adolescents’ access to services. Organizational factors included bureaucratic barriers and the clinic’s reputation among youth. Community factors centered on mistrust within healthcare systems and stigmatization of seeking certain types of services. Participants also described how state-level policies influence parent/guardian consent requirements, which can limit adolescents’ access to care.
Conclusion:
Adolescent access to and utilization of healthcare in the United States is a complex problem requiring systems-level change. Healthcare organizations and providers have the opportunity and capacity to positively influence adolescents’ healthcare access and experiences, however a lack of standardized, clinic-level priorities and guidelines can limit adolescent-centered care.
Introduction
Adolescence is a critical period in human development consisting of rapid biological, psychological, and social changes. 1 Common health risk behaviors such as substance use, unprotected sexual intercourse poor diet, and physical inactivity are often initiated in adolescence; therefore, quality healthcare during this period is critical to prevention and early intervention to help prevent poor health outcomes later in life.2,3 In the United States (U.S.), the most common healthcare access points for adolescents are pediatric and family medicine clinics, where young people receive wellness checks, sports physicals, and sick visits.4,5 During these visits, adolescent patients undergo routine, generalized exams that focus on their physical health. These exams typically mimic services provided to adult populations, despite unique adolescent-specific attributes.
Guidelines set by the American Academy of Pediatrics suggest screening adolescents for behavioral, social, and emotional concerns in addition to standardized physical health assessments. 2 Screening topics associated with these recommendations include substance use (CRAFT assessment), depression, suicide risk (PHQ9 and similar), and anxiety (GAD7). Less specific guidance is provided for social screenings, and no screenings include sexual and reproductive health. 2 However, research identifies gaps in practice for conducting comprehensive screenings.6 -8 In fact, fewer than half of young people in the U.S. report their respective providers addressed developmentally appropriate topics such as mental health or sexual and reproductive health with them.4 -6,9,10 Furthermore, adolescents often avoid initiating conversations about sensitive topics with their healthcare providers because of fear, stigma, embarrassment, and/or a lack of trust.11 -19
Existing literature also identifies social and environmental barriers to adolescent healthcare access. Examples of these barriers include parent/guardian relationships, cultural norms, socioeconomic status, rurality, and knowledge of services. 3 Despite being underutilized, guidance for adolescent-centered care does exist. The World Health Organization (WHO) offers a framework of adolescent-friendly healthcare, as well as principles of patient-centered care to improve healthcare access and utilization among adolescents. 20 The WHO framework defines “‘adolescent-friendly health services’ from the perspective of quality, and provides step-by-step guidance on developing quality standards for health service provision to adolescents.” Five essential dimensions of adolescent-friendly health care are equity, accessibility, acceptability, appropriateness, and effectiveness. 20 Other adolescent-centered strategies, include: increased access to mental health and sexual and reproductive health services, better dissemination of information to youth and their parents/guardians, developmentally appropriate interventions, and new financing options. 3
The Comprehensive Healthcare for Adolescents Initiative (CHAI)
In July 2020, the Comprehensive Healthcare for Adolescents Initiative (CHAI) was funded by the U.S. Department of Health and Human Services, Office of Population Affairs to convene a network of healthcare partners, adolescent health subject matter experts, and youth to develop innovative programs to increase youth access to and positive experiences with healthcare providers. The team collaborated with partners to gather ethnographic and qualitative data to understand priorities for program development. As part of this effort, the team conducted ethnography at healthcare settings, convened a youth advisory group, and collected qualitative data from adolescent serving providers and support staff. For this project, adolescence was defined as an age group of 12 to 25 years based on input from partner clinics. This paper reports qualitative insights gleaned from healthcare providers serving youth. The purpose of this inquiry was to identify barriers and facilitators to youth accessing healthcare in the U.S. and inform program development priorities.
Methods
Five focus groups were conducted with healthcare providers and clinic staff from CHAI’s organizational partners, which represented a variety of settings (community clinics, school-based health clinics, an adolescent health clinic, and federally qualified health centers) where youth access healthcare services (Table 1). Focus groups were selected as a methodology because the structure allows researchers to explore a phenomena and take advantage of the synergy that arises from interactions among members.21,22 For example, 1 participant’s comments often prompted remarks by other participants; thereby allowing researchers to gain meaningful insights from the dialogue.22,23 The study was approved by the Texas A&M University Institutional Review Board prior to data collection.
Focus Group Details Including Participant Role Within Organization.
Participants and Recruitment
To recruit participants, a member of the CHAI team contacted a representative from partner organizations to introduce the study. Each representative provided contact information for providers who worked at the respective organizations and interacted with youth. The research team emailed the recommended individuals and invited them to participate in a focus group. An informed consent document was signed by each participant and returned prior to the focus group. Five focus groups were conducted, and these groups ranged in size from 2 to 11 participants. Table 1 provides details of each focus group.
Focus Group Procedure
Focus groups were held with each organization in November or December 2020. Focus groups were conducted virtually due to COVID-19 pandemic and organizational restrictions. Focus groups lasted a maximum of 60 min, and 2 members of the research team with training in qualitative research methods led the discussion. At the beginning of each focus group 1 researcher confirmed verbal consent for participation and audio recording. Focus groups were audio recorded and transcribed.
During each focus group, 1 member of the research team led the discussion while the second research team member took notes. Notes were available for the participants to view throughout the session to ensure greater accuracy and allow corrections or clarifications to the notes in real-time. Participants were asked to describe the youth they typically serve, the youths’ primary concerns or needs, and how youth services fit into the overall scope and mission of the organization.
Participants were then shown a concept map that was developed based on existing literature to understand documented barriers that youth face when accessing healthcare services. 3 Researchers explained the concept map (Figure 1) development process and the key points for possible intervention to the participants. Participants were asked how the 5 identified intervention points—parent/guardian relationships, cultural norms, socioeconomic status, rurality, and knowledge of services—affect youth’s access to and experience with healthcare. Participants were also asked to identify additional barriers and facilitators not presented on the original concept map. Audio recordings were transcribed verbatim by an external transcription firm with a signed confidentiality agreement.
Adolescent access to healthcare system map.
Analysis
Focus group transcripts were each analyzed using Inductive Thematic Analysis. 24 Two researchers independently coded the transcript in its entirety, then convened to discuss their findings, establish consensus, and produce a single set of themes and subthemes for each focus group. Finally, researchers cross-analyzed the data to identify emerging themes across all groups. Overall themes were reviewed with organizational representatives to ensure findings were accurate and complete. Emergent themes were categorized using the Social-Ecological Model (SEM) which consists of 5 nested levels: individual, interpersonal, organizational, community, and policy. 25
Results
Results are presented using the SEM to divert the focus from individual responsibility and view healthcare access as a complex, ecological issue. Each SEM level is defined below, followed by emergent themes from the data discussed in the context of social-ecological levels. Table 2 shows an overview of themes and sub-themes. The sections below provide detailed descriptions of each theme.
Focus Group Themes by Ecological Level.
Individual
The SEM individual level includes an individual’s knowledge, skills, attitudes, and behaviors; in this case, related to access and utilization of healthcare services. 25
Youth Knowledge of Services
According to focus group participants, youths’ knowledge of available services was affected by variability in the different healthcare systems. This aligns with a systematic review published in 2018, that reported a youth’s ability to recognize and understand healthcare is a key factor in accessing health services. 26 Results of our study indicated service modalities and availability of services change continuously, as do methods of communication from providers and clinics. Advances in technology and events such as the COVID-19 pandemic have also precipitated changes. Healthcare providers identified communication-related solutions such as social media, word-of-mouth, and “boots on the ground” efforts (eg, community outreach) to enhance youths’ knowledge about providers’ available services.
Confidentiality was another critical issue. Providers said youth should understand their rights to confidential healthcare. The importance of confidential care is frequently cited as a critical component to adolescent healthcare services. 27 Participants explained that some adolescents think providers are prying when asking for medical history. “When you talk to them as a provider, they’re like, ‘I think you’re asking too many questions. I shouldn’t be telling you that.’” In response, providers routinely reassure adolescents and help them understand that sharing health-related information is helpful and necessary for the provider to deliver adequate care. As one provider said, “Once they [youth] can understand the fact that, okay, this is on a ‘need to know’ basis. And they’re able to cross that bridge, typically it becomes a very smooth relationship eventually.”
Socioeconomic Status
When providers were asked about socioeconomic status (SES) being a barrier to access for young people, participants focused on youth from low-SES backgrounds. Participants discussed disparities in access to services and poor health outcomes. Participants noted adolescents from low SES backgrounds have increased difficulty navigating the healthcare system. One example was the complexities of health insurance coverage. Structural barriers including health insurance and the availability or unavailability of free care are known barriers to healthcare access. 26 Often, underinsured youth rely on finding free primary services, but may not be able to attend referral appointments with specialists or receive continued care because of inability to pay. Several participants discussed their respective organization’s efforts to provide youth and their families with the resources to apply for coverage assistance such as patient navigators and ensure these individuals received maximum benefits.
Other circumstances, such as caregivers’ work schedules that conflict with clinic hours or the lack of reliable transportation, make it difficult for young people to attend appointments. “We do see a lot of rescheduling or delay in visits because of transportation or maybe not necessarily transportation, but parents bringing them in or guardians finding the time to bring them in.” Another participant emphasized, “Our parents want their kids to be healthy, but they may have other priorities that rank higher in terms of, like, feeding their kids or transportation issues.”
Interpersonal
The SEM interpersonal level is related to an individual’s relationships with others. 25
Parent/Guardian Relationships
A common theme throughout the focus groups was the parent/guardian’s role in adolescents seeking care. This finding is consistent with existing literature, which identifies the importance of parental relationships, notably the adolescent’s relationship with their mother, as well as cultural beliefs.26,27 However, participants felt parents/guardians lacked knowledge about adolescent health needs and services. These deficits were partially attributed to language barriers. Participants said additional interpretation services and translated health-related materials are necessary to improve access. Other issues arose when a parent/guardian and their adolescent have conflicting priorities and values related to care. One participant explained, “When there’s a distant relationship [between parents/guardians and adolescents], they may not know. So, ‘It’s not that bad,’ or ‘My kid would never say that’ or ‘My kid doesn’t feel like that.’ ‘They don’t need that.’”
Conversely, participants described instances when services that were traditionally stigmatized such as those for mental health or substance use were supported and sought because the parent/guardian was familiar with or had utilized the service themselves. One participant stated, “Parents who’ve had counseling services themselves are far more adamant and interactive with us on getting services for their kids. So, they’re like, ‘Well, I saw a counselor and it really helped me. So, I want my kids to see one.’”
Organization
The SEM organizational level refers to factors within the organizational structure that influence adolescents’ access to services. 25
Capacity
Participants representing larger healthcare organizations described how their organizational structures such as the scale and level of bureaucracy affected their capacity to serve youth. For example, 1 participant mentioned their organization offers adolescent services up to age 25 years, to provide continuity and ease the transition from pediatric to adult care. They explained, “Not having a strict cutoff at 18 has made the world of difference for a lot of young people because maybe they don’t have a family that wants them to come get services, but now they’re legal adults and they’re also just not out in the cold trying to navigate a brand-new system.” Other participants praised their organization’s capacity to provide care at convenient access points (eg, schools). They also stressed the downstream benefits of increased care utilization such as decreased school absenteeism.
Centralized decision-making power can limit a clinic’s capacity to serve youth. Individuals who worked in clinics that were part of a larger healthcare system felt pressure to generate revenue for the organization. These staff members also had difficulty maintaining buy-in for adolescent-focused services from leadership without the prospect of significant revenue. As 1 participant said, “We end up leaving a lot of these very important decisions that affect accessibility to divisions that aren’t ours. . . not being able to explain to patients what their cost might look like, which could affect their ability to come in, timeline of it, who they should talk to. It gets really muddled.”
Workflow
Participants said youth encounter difficulties in receiving referrals and accessing specialty services because of complicated appointment processes and paperwork. Participants recommended adopting a more coordinated model of care with multiple access points to improve patient navigation and referral processes. Participants also suggested utilizing a team-based approach to patient healthcare navigation, and “The fact that we all are part of making sure that the patient gets what they need next from the front desk to back office. We are all working as a team to navigate that patient through our clinic to make sure that they get everything possible that they need.”
Clinic Environment
When asked about the clinic environment, participants suggested tailoring the experience for youth. For example, some clinics had separate exam rooms and waiting areas for pediatric versus adolescent care. Adolescent-focused clinic spaces featured youth-made artwork, comfortable furniture, age-appropriate health materials, interactive resources, and/or entertainment. These spaces provided privacy for adolescent patients who may be worried about others overhearing details about their appointment. Some providers said they tried to improve adolescent access to healthcare by ensuring adolescent patients could obtain over-the-counter medicines, prescriptions, and contraception on-site. One participant stated “We have medications on hand and available. It reduces the need for transportation to a pharmacy or money to pay for a prescription or treatment.” Miller et al 27 identified similar findings, referring to changes to the clinic environment as one critical factor that influenced adolescent comfort.
Representation
Existing research identifies the importance of employing clinic staff with high levels of cultural competency and respect for patients. However, the findings of this study extend beyond what has been previously reported. All focus group participants emphasized the need for providers and staff to represent the demographics of the local communities served. Participants identified challenges in not having a diverse staff. “It can be difficult to even get like a form translated. I’ve been fighting to get some of our paperwork for just a gender clinic translated for a good two months now. And even for me as an employee to track down someone to translate it is difficult.” Another participant expressed concerns regarding diversity shortfalls by noting, “We’re in a very white neighborhood that is removed from a lot of the folks that we would want to provide access to in the city. They might have knowledge of the service. But if they don’t see themselves at all, are they going to want to come to this space for it?” Notably, all participants indicated their organizations try to hire adolescent serving personnel from within the communities they serve. As 1 participant said, “Having a staff that can reflect the patients that we see is important. I see a difference. Patients get excited when they see that there are doctors and nurses and social workers and front desk staff that look like them and they feel more comfortable.”
Reputation
The reputation of a healthcare organization has both negative and positive influences on youth healthcare access. Participants representing a federally qualified health center discussed their efforts to dispel negative assumptions people have regarding the quality of free or low-cost services. In contrast, participants representing an adolescent health clinic explained how their strong reputation and location in affluent neighborhoods leads people to assume their organization does not accept Medicaid or the Children’s Health Insurance Program.
Community
The SEM community level refers to local resources and cultural norms related to healthcare access and utilization. 25
Cultural Norms
Participants cited the historical mistrust of healthcare systems among patients from various cultures as a barrier to adolescent access. Participants also discussed how religiosity and a “small town mindset” influenced acceptability of services by contributing to stigmatization of certain aspects of care such as mental and sexual health. When discussing youth’s perceptions, 1 participant remarked, “They don’t want to go because they don’t want their friends to see, or they don’t want to be judged, or they don’t want parents to get upset because they’re coming to these services, but yet, they’re struggling.” Another participant said, “I think there’s a lot of stigma, especially in some of our more rural communities. I’ve had a parent who is like, ‘Yeah, my kid can access service, but nobody at the school can know and nobody in the community can know because then they’re all going to know he has a problem and everybody talks’.” For these reasons, participants emphasized the need for organizational staff to possess in-depth knowledge of the communities they serve and to be sensitive to cultural norms.
Geography
Geographic barriers such as travel time to appointments and the scarcity of primary and specialty care providers in rural communities reduces residents’ access to care.28,29 Limited public transportation options can also reduce access in urban areas. 30 Several participants, each representing different organizations, explained how referrals often require patients to travel 45 min or more for specialty care. However, strategically placed locations such as school-based health centers and non-traditional modes of access including telehealth or mobile healthcare clinics have increased opportunities for youth living in under-resourced areas to access and receive care. Telehealth services have helped reach youth, especially during the COVID-19 pandemic. Participants expressed a mixture of gratitude and guilt when describing how the pandemic has improved adolescent access to care. Participants also said rurality can limit youth access to telehealth services due to unreliable broadband or Wi-Fi connections.
Policy
Finally, the SEM policy level concerns governing bodies and laws affecting adolescents’ access to care. 25
Parent/Guardian Consent
Policies that require a parent/guardian consent for health services limit youth access to healthcare. 31 For example, some youth who cannot legally consent for their own healthcare, are raised by informal guardians (eg, grandparents, aunts, and uncles) who cannot legally provide consent for the young person’s treatment. Participants suggested solutions their respective organizations have used, such as creating blanket consent forms, which are signed by legal guardians and upheld throughout the school year.
Discussion
Adolescent access to and experience with healthcare systems in the U.S. is a complex problem, affected by a variety of factors across all levels of the Social-Ecological Model. This study allowed researchers to examine themes within and across ecological levels, and several barriers were identified at multiple levels. For example, the role of parents/guardians was noted in multiple levels including their interpersonal relationship with their adolescent, community norms that may limit willingness of the parent/guardian to accept and seek services for their adolescent, and consent policies within the healthcare clinics. Another example was cultural aspects of serving diverse clients. Client socioeconomic status was noted as a factor at the individual level and cultural norms affecting acceptance of services was noted at the community level. Ability to access diverse providers within organizations and reputation of the clinic as being accessible for low socioeconomic patients were noted at the organizational level.
Findings from this qualitative study reinforce the need for adolescent-friendly healthcare services tailored specifically for young people. Tailoring must occur within multiple aspects of healthcare, including what information and resources are available, patient-provider communication, clinic operating hours, clinic location, and environmental changes to ensure youth feel safe and seen. Study participants shared several potential solutions for how healthcare settings can improve adolescent experiences using unconventional strategies such as: providing medication onsite, in-depth assistance in navigating treatment and insurance, using mobile clinics to provide services closer to patients, and working to increase trust through word of mouth, etc. However, organizational support and policies are also critical for the implementation and success of adolescent-friendly care.
Adolescents desire comprehensive healthcare from providers who are knowledgeable, respectful, and trustworthy.4,32 At an interpersonal level, providers can improve rapport with adolescent patients if providers explain confidentiality, ensure private time during the visit, and have transparent conversations. 6 Communication is critical to address the most pressing health concerns for adolescents. However, participants stated that trust is a precondition to discussing sensitive topics with adolescents, yet it is difficult to establish.33,34 Supportive clinic policies such as one-on-one visit time with providers and adolescents, as well improved provider communication can be used to build rapport and trust with adolescent patients. Extended clinic hours, easy to use or free transportation, and serving older patients aged 18 to 25 years, are also strategies to decrease barriers to access. Organizational processes that ensure diverse, community-centric providers are recruited and hired in youth-serving clinics can foster trust and improve patient experiences. Furthermore, some issues, like language barriers, may be addressed by providing direct, instrumental support through translated materials and employing multilingual staff.
Study Strengths, Weaknesses, and Future Directions
Like all research efforts, this study has both strengths and weaknesses. First, focus groups were conducted with a diverse group of healthcare organizations in 3 states, representing different settings, rural and urban environments, and diverse patient populations. However, the sample size of 5 organizations is still not likely representative of all adolescent-serving organizations. Further, the qualitative nature of the study, including analysis by 2 researchers may be limiting. Therefore, more rigorous future studies that include mixed methods, and measurement of tangible improvements to adolescent healthcare and associated improvements in healthcare access and health outcomes would help make the case for changes on a wider scale.
Due to the interconnected and complex aspects of health care, a systems-level approach could be a useful next step to both understand and develop intervention strategies to increase adolescent access to care. Next steps for this study could include using an approach like community-based systems dynamics, which engages stakeholders in co-creating a conceptual understanding using a causal loop diagram or a systems dynamics map. Causal loop diagrams illustrate the connections between factors affecting youth when accessing healthcare in a community. This process can create a shared understanding of public health issues and build consensus through stakeholder engagement and participation. Systems strategies allow users to examine potential changes in a system that an intervention can produce and identify unintended consequences. Systems perspectives can also be used to identify opportunities for intervention adoption and implementation. Using a systems mindset, negative unintended consequences can be anticipated, and strategic intervention can be planned.
Conclusions
Substantial changes are needed to improve adolescents’ access to and utilization of healthcare. As this study demonstrates, the locus of control is not only on individual youth or their families, but also on providers and organizations. Therefore, solutions must focus beyond the individual and include holistic changes. Providers and organizations serve as an entity with power to improve healthcare experiences through professional actions and organizational change. However, changes at multiple levels in an ecological approach are difficult to implement, and the existing healthcare environment is not easily modifiable. Therefore, a systems approach that unifies organizational and clinical stakeholders and focuses on system structure, as opposed to individuals’ behaviors, is critical for changing determinants that influence young people’s healthcare access and quality.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Department of Health and Human Services, Office of the Assistant Secretary for Health, Office of Population Affairs under grant number [AH-TP2-20-002]—Tier 2 Innovation and Impact Network Grants: Achieving Optimal Health and Preventing Teen Pregnancy in Key Priority Areas. Its contents are solely the authors’ responsibility and do not necessarily represent the official views of the Department of Health and Human Services or the Office of Population Affairs.
