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Research ArticleOriginal Research

Caregiver and Clinician Perspectives on Missed Well-Child Visits

Elizabeth R. Wolf, Jennifer O’Neil, James Pecsok, Rebecca S. Etz, Douglas J. Opel, Richard Wasserman and Alex H. Krist
The Annals of Family Medicine January 2020, 18 (1) 30-34; DOI: https://doi.org/10.1370/afm.2466
Elizabeth R. Wolf
1Department of Pediatrics, Virginia Commonwealth University, Richmond, Virginia
2Children’s Hospital of Richmond at VCU, Richmond, Virginia
MD, MPH
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  • For correspondence: elizabeth.wolf@vcuhealth.org
Jennifer O’Neil
3Department of Family Medicine and Population Health, Virginia Commonwealth University, Richmond, Virginia
BS
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James Pecsok
3Department of Family Medicine and Population Health, Virginia Commonwealth University, Richmond, Virginia
BS
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Rebecca S. Etz
3Department of Family Medicine and Population Health, Virginia Commonwealth University, Richmond, Virginia
PhD
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Douglas J. Opel
4Department of Pediatrics, University of Washington, Seattle, Washington
MD, MPH
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Richard Wasserman
5Department of Pediatrics, Larner College of Medicine, University of Vermont, Burlington, Vermont
MD, MPH
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Alex H. Krist
3Department of Family Medicine and Population Health, Virginia Commonwealth University, Richmond, Virginia
MD, MPH
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Abstract

PURPOSE Despite the benefits of well-child care visits, up to one-half of these visits are missed. Little is known about why children miss them, so we undertook a qualitative study to elucidate these factors.

METHODS We interviewed 17 caregivers whose children had missed well-child visits and 6 clinicians, focusing on 3 areas: the value of well-child visits, barriers to attendance, and facilitators of attendance. Transcripts were analyzed with a grounded theory approach and thematic analysis.

RESULTS Caregivers and clinicians identified similar important aspects of well-child visits: immunizations, detection of disease, and monitoring of growth and development. Both groups identified similar barriers to attendance: transportation, difficulty taking time off from work, child care, and other social stressors.

CONCLUSIONS Further work to explore how addressing social determinants of health might improve attendance of well-child visits is needed.

Key words
  • attendance
  • children
  • well-child visits
  • pediatrics
  • barriers
  • social determinants of health
  • vulnerable populations
  • primary care
  • practice-based research

INTRODUCTION

The American Academy of Pediatrics recommends 13 well-child visits before the age of 6 years.1 These visits are an opportunity to deliver immunizations, provide anticipatory guidance, and identify and treat disease.2 Attendance of well-child visits has been associated with reduced hospitalizations and emergency department use.3,4 Despite these benefits, children miss between 30% to 50% of well-child visits.3–6 Poor, uninsured, and African American children miss a greater proportion of these visits compared with upper-income, privately insured, and white counterparts.5–7 Many states support safety-net practices to promote access. Despite these efforts, it is not fully understood why more disadvantaged patients miss a disproportionately larger share of well-child visits.

Few studies have explored patient and clinician perspectives on why pediatric visits are missed. Studies conducted more than 15 years ago identified transportation,8,9 work,9 wait times,8 and lack of understanding about the reason behind the visits8 as reasons for missed visits. Clinicians in England also identified social reasons and family belief systems as reasons.10 Because clinicians are not always aware of the nonmedical aspects of patients’ lives, they may not fully understand or may have different perspectives on why well-child visits are missed. It is also unclear whether clinician and caregiver perspectives on missed well-child visits align. We aimed to assess current US caregiver and clinician perspectives regarding missed well-child visits in an urban, underserved health care system with a large proportion of African Americans.

METHODS

We selected a purposive sample of 17 caregivers and 6 clinicians (family practice and pediatric physicians) for children aged 0 to 6 years who missed 2 or more well-child visits at Virginia Commonwealth University Health System (VCUHS) between January 1, 2011, and January 1, 2016. We chose 2 or more missed well-child visits as the cutoff in order to include caregivers of young children as well as those of older children. We hypothesized that using a higher threshold of missed visits would disproportionately select families with older children. We excluded patients without any well-child visits recorded as this group may have used a different health system as their primary care medical home. Well-child visits were identified by relevant International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) or International Classification of Diseases, 10th Revision, Clinical Modification (ICD-10-CM) codes (eg, V20.2, Z00.129) and Current Procedural Terminology (CPT) claims codes (eg, 99381). Because Spanish-speaking children make up about one-third of the pediatric population at VCUHS, we also included Spanish-speaking caregivers in this study.

Caregivers were contacted through direct mailings, while clinicians serving pediatric patients in VCUHS were contacted through e-mail. Individuals who did not respond to the initial mailings were sent another invitation.

Our research team developed a semistructured guide before the study. The included questions focused on 3 domains: the value of well-child visits (eg, “What are important aspects of well-child visits?”), barriers to attendance (“What makes it hard to attend well-child visits?”), and facilitators of attendance (eg, “What would make attendance easier?”). Interviews were conducted by telephone between November 2016 and March 2017 without the use of field notes. Two female interviewers (J.O. and Martha Gonzalez [M.G.]) conducted all the interviews; the former is a medical student, and the latter is a Spanish-speaking qualitative researcher. Both interviewers were trained in interview techniques and the use of the interview guide before the study and completed the interviews in a standardized way (ie, questions were asked in a similar manner to all of the participants). Neither interviewer had relationships with the caregivers before starting the study.

Verbal consent was obtained before the start of the interview. Participants were briefed on the goals of the study before the interviews. We did not the record demographics of the participants in order to protect their privacy and encourage forthright dialog between the participant and the interviewer. Interviews lasted between 10 and 20 minutes, and none were repeated. Interviews were conducted until saturation was reached. At the completion of each interview, caregivers were mailed a $25 gift card. Clinicians were not compensated for participation.

Interviews were digitally recorded and transcribed. Spanish-speaking families were interviewed by a native Spanish speaker (M.G.) and transcripts were translated into English for interpretation. Transcripts were not made available to participants for review after the interviews were complete.

We used a grounded theory approach when analyzing the interviews. After reviewing 5 interviews independently, the research team (E.R.W., J.O., and J.P.) met and created an initial codebook based on the interview guide and topics raised by participants. As a group, the sample of interviews was reviewed with the initial codebook, and the codebook was adjusted based on consensus. With use of an editing style of coding,11 this final codebook was applied to the full data set (J.O., J.P., and E.R.W.) using Word (Microsoft Corp). Coded data were reviewed by coauthors (J.O., J.P., and E.R.W.) and grouped into 3 categories: (1) valuable aspects of well-child visits, (2) barriers to well-child visit attendance, and (3) facilitators of well-child visit attendance. The team then used thematic analysis12 to highlight the significance of each grouping from the perspective of caregivers and clinicians. Participants did not provide feedback on the results of the analysis. Our study was approved by the institutional review board of Virginia Commonwealth University.

RESULTS

Of 205 English-speaking caregivers and 95 Spanish-speaking caregivers who were mailed invitations, 12 English-speaking and 5 Spanish-speaking caregivers agreed to participate. Of the 23 clinicians practicing at VCUHS who were contacted, 6 agreed to participate.

Both caregivers and clinicians identified immunizations, the detection of illness, and the monitoring of growth and development as important aspects of well-child care (Table 1). The long-term relationship and interaction between the clinician and family was also important to both groups. Clinicians thought that their relationships with the families played a role in determining whether the family would attend future visits, as the following representative quote illustrates: We have seen time and again that relationship and, like, connection matters for everyone when it comes to the people who take care of them and the system that takes care of them, and so if you can enhance the relationship, I think you increase your chances of helping the patients who are least likely to show up to maybe, like, improve that. (clinician participant)

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Table 1

Selected Quotations on the Value of Well-Child Visits

Caregivers and clinicians cited lack of transportation and difficulty taking time off from work as reasons for missed well-child visits (Table 2). Caregivers said that underlying financial stress made these logistics even more difficult. Caregivers and clinicians also discussed competing priorities, such as caring for young children, older children’s school schedules, and the scheduling of the caregivers’ own medical appointments. Clinicians also thought that caregivers may prioritize attending well-child visits in which vaccinations are typically given. Clinicians expressed concern that immigration and language differences may be barriers to attendance. Spanish-speaking caregivers thought that availability of language services made them more interested in attending well-child visits.

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Table 2

Selected Quotations on the Barriers to Well-Child Visit Attendance

DISCUSSION

We found that this sample of caregivers and clinicians from an urban underserved health system understood the need for and valued well-child visits. Caregivers and clinicians thought these visits were important to give vaccinations, identify disease, monitor growth and development, and build the relationship between family and clinician. Caregiver and clinician perspectives on reasons behind missed well-child visits were aligned. Both groups thought that transportation, financial stress, taking time off from work, and difficulty with child care were barriers to attendance. Clinicians identified language differences and immigration status as barriers to attendance, and Spanish-speaking families thought the presence of language services facilitated attendance.

Similar to findings of older studies,8–10 both groups primarily described structural and social barriers as contributing to missed well-child visits. The VCUHS is considered a safety-net health system with a large proportion of publicly insured children. Richmond also has a high proportion of single parents and parents working in low-wage jobs who may find it more difficult to take time off from work. The clinics that see pediatric patients are centrally located and on major bus lines; however, some families may feel unsafe waiting at bus stops in areas with high rates of violent crime. It should be noted that since conducting these interviews, parking has become free for patients, although we have not yet studied how this change has affected attendance.

One limitation to our study is the reliance on mailings, which may have resulted in the exclusion of families with low levels of literacy or unstable housing. In addition, the relatively low response rate (although typical for studies of this type) may have biased our sample toward those who valued well-child visits to a greater degree than those who did not respond. We plan to elicit additional perspectives from hard-to-reach families in future studies.

Our findings suggest there is a need to further explore the potential relationship between well-child visit attendance and social determinants of health. Although the importance of social determinants of health has been known to the scientific community for some time, attempts to address these determinants have been limited. There may be ways to reduce bar riers to attendance through interventions at the level of the family (eg, transportation, child care), the health care system (eg, appointment reminders, care coordination, screening for and addressing of social determinants of health), and the payer (value-based care rather than fee for service). Future research emphasis could be placed on understanding and helping the children missing the greatest number of visits.

Acknowledgments

We would like to acknowledge Martha Gonzalez, Julia Rozman, and Paulette Lail Kashiri for their assistance with the project.

Footnotes

  • Conflicts of interest: authors report none.

  • To read or post commentaries in response to this article, see it online at http://www.AnnFamMed.org/content/18/1/30.

  • Funding support: This work was supported by a 2016 Bright Futures Young Investigator Award from the Academic Pediatric Association and by a Clinical and Translational Science Awards grant (UL1TTR002649).

  • Previous presentation: Qualitative Methods for Identifying Reasons Behind Missed Well Child Care Visits. Presented at the Practice Based Research Network Conference; June 22, 2017; Bethesda, Maryland.

  • Received for publication January 8, 2019.
  • Revision received April 21, 2019.
  • Accepted for publication May 17, 2019.
  • © 2020 Annals of Family Medicine, Inc.

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Caregiver and Clinician Perspectives on Missed Well-Child Visits
Elizabeth R. Wolf, Jennifer O’Neil, James Pecsok, Rebecca S. Etz, Douglas J. Opel, Richard Wasserman, Alex H. Krist
The Annals of Family Medicine Jan 2020, 18 (1) 30-34; DOI: 10.1370/afm.2466

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Caregiver and Clinician Perspectives on Missed Well-Child Visits
Elizabeth R. Wolf, Jennifer O’Neil, James Pecsok, Rebecca S. Etz, Douglas J. Opel, Richard Wasserman, Alex H. Krist
The Annals of Family Medicine Jan 2020, 18 (1) 30-34; DOI: 10.1370/afm.2466
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