Barriers and Facilitators to the Implementation of Family-Centered Technology in Complex Care: Feasibility Study

Jody L Lin, Bernd Huber, Ofra Amir, Sebastian Gehrmann, Kimberly S Ramirez, Kimberly M Ochoa, Steven M Asch, Krzysztof Z Gajos, Barbara J Grosz, Lee M Sanders, Jody L Lin, Bernd Huber, Ofra Amir, Sebastian Gehrmann, Kimberly S Ramirez, Kimberly M Ochoa, Steven M Asch, Krzysztof Z Gajos, Barbara J Grosz, Lee M Sanders

Abstract

Background: Care coordination is challenging but crucial for children with medical complexity (CMC). Technology-based solutions are increasingly prevalent but little is known about how to successfully deploy them in the care of CMC.

Objective: The aim of this study was to assess the feasibility and acceptability of GoalKeeper (GK), an internet-based system for eliciting and monitoring family-centered goals for CMC, and to identify barriers and facilitators to implementation.

Methods: We used the Consolidated Framework for Implementation Research (CFIR) to explore the barriers and facilitators to the implementation of GK as part of a clinical trial of GK in ambulatory clinics at a children's hospital (NCT03620071). The study was conducted in 3 phases: preimplementation, implementation (trial), and postimplementation. For the trial, we recruited providers at participating clinics and English-speaking parents of CMC<12 years of age with home internet access. All participants used GK during an initial clinic visit and for 3 months after. We conducted preimplementation focus groups and postimplementation semistructured exit interviews using the CFIR interview guide. Participant exit surveys assessed GK feasibility and acceptability on a 5-point Likert scale. For each interview, 3 independent coders used content analysis and serial coding reviews based on the CFIR qualitative analytic plan and assigned quantitative ratings to each CFIR construct (-2 strong barrier to +2 strong facilitator).

Results: Preimplementation focus groups included 2 parents (1 male participant and 1 female participant) and 3 providers (1 in complex care, 1 in clinical informatics, and 1 in neurology). From focus groups, we developed 3 implementation strategies: education (parents: 5-minute demo; providers: 30-minute tutorial and 5-minute video on use in a clinic visit; both: instructional manual), tech support (in-person, virtual), and automated email reminders for parents. For implementation (April 1, 2019, to December 21, 2020), we enrolled 11 providers (7 female participants, 5 in complex care) and 35 parents (mean age 38.3, SD 7.8 years; n=28, 80% female; n=17, 49% Caucasian; n=16, 46% Hispanic; and n=30, 86% at least some college). One parent-provider pair did not use GK in the clinic visit, and few used GK after the visit. In 18 parent and 9 provider exit interviews, the key facilitators were shared goal setting, GK's internet accessibility and email reminders (parents), and GK's ability to set long-term goals and use at the end of visits (providers). A key barrier was GK's lack of integration into the electronic health record or patient portal. Most parents (13/19) and providers (6/9) would recommend GK to their peers.

Conclusions: Family-centered technologies like GK are feasible and acceptable for the care of CMC, but sustained use depends on integration into electronic health records.

Trial registration: ClinicalTrials.gov NCT03620071; https://ichgcp.net/clinical-trials-registry/NCT03620071.

Keywords: acceptability; barrier; care coordination; care providers; children; chronic disease; chronic illness; complex care; coordination; families; family medicine; feasibility; implementation; implementation science; improvement; monitoring; parents; pediatric; technology.

Conflict of interest statement

Conflicts of Interest: None declared.

©Jody L Lin, Bernd Huber, Ofra Amir, Sebastian Gehrmann, Kimberly S Ramirez, Kimberly M Ochoa, Steven M Asch, Krzysztof Z Gajos, Barbara J Grosz, Lee M Sanders. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 23.08.2022.

References

    1. Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SKM, Simon TD, Srivastava R. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011 Mar;127(3):529–38. doi: 10.1542/peds.2010-0910. peds.2010-0910
    1. Neff JM, Sharp VL, Muldoon J, Graham J, Myers K. Profile of medical charges for children by health status group and severity level in a Washington State Health Plan. Health Serv Res. 2004 Feb;39(1):73–89. doi: 10.1111/j.1475-6773.2004.00216.x. HESR216
    1. Simon Tamara D, Berry Jay, Feudtner Chris, Stone Bryan L, Sheng Xiaoming, Bratton Susan L, Dean J Michael, Srivastava Rajendu. Children with complex chronic conditions in inpatient hospital settings in the United States. Pediatrics. 2010 Oct;126(4):647–55. doi: 10.1542/peds.2009-3266. peds.2009-3266
    1. Cohen E, Berry JG, Camacho X, Anderson G, Wodchis W, Guttmann A. Patterns and costs of health care use of children with medical complexity. Pediatrics. 2012 Dec;130(6):e1463–70. doi: 10.1542/peds.2012-0175. peds.2012-0175
    1. Strickland BB, Jones JR, Newacheck PW, Bethell CD, Blumberg SJ, Kogan MD. Assessing systems quality in a changing health care environment: the 2009-10 national survey of children with special health care needs. Matern Child Health J. 2015 Feb;19(2):353–61. doi: 10.1007/s10995-014-1517-9.
    1. Kuo DZ, Goudie A, Cohen E, Houtrow A, Agrawal R, Carle AC, Wells N. Inequities in health care needs for children with medical complexity. Health Aff (Millwood) 2014 Dec;33(12):2190–8. doi: 10.1377/hlthaff.2014.0273. 33/12/2190
    1. Mosquera RA, Avritscher EBC, Samuels CL, Harris TS, Pedroza C, Evans P, Navarro F, Wootton SH, Pacheco S, Clifton G, Moody S, Franzini L, Zupancic J, Tyson JE. Effect of an enhanced medical home on serious illness and cost of care among high-risk children with chronic illness: a randomized clinical trial. JAMA. 2014;312(24):2640–8. doi: 10.1001/jama.2014.16419.2084891
    1. Kuo DZ, Berry JG, Glader L, Morin MJ, Johaningsmeir S, Gordon J. Health services and health care needs fulfilled by structured clinical programs for children with medical complexity. J Pediatr. 2016 Feb;169:291–6.e1. doi: 10.1016/j.jpeds.2015.10.010. S0022-3476(15)01169-5
    1. Council on Children with Disabilities and Medical Home Implementation Project Advisory Committee Patient- and family-centered care coordination: a framework for integrating care for children and youth across multiple systems. Pediatrics. 2014 May;133(5):e1451–60. doi: 10.1542/peds.2014-0318.peds.2014-0318
    1. McAllister JW. Achieving a shared plan of care with children and youth with special health care needs. Lucille Packard Foundation for Children's Health. 2014. May, [2022-08-08]. .
    1. McAllister JW, Keehn RM, Rodgers R, Lock TM. Care coordination using a shared plan of care approach: from model to practice. J Pediatr Nurs. 2018;43:88–96. doi: 10.1016/j.pedn.2018.09.009.S0882-5963(18)30109-X
    1. Prahalad P, Tanenbaum M, Hood K, Maahs DM. Diabetes technology: improving care, improving patient-reported outcomes and preventing complications in young people with Type 1 diabetes. Diabet Med. 2018 Apr;35(4):419–429. doi: 10.1111/dme.13588.
    1. Nkoy FL, Fassl BA, Wilkins VL, Johnson J, Unsicker EH, Koopmeiners KJ, Jensen A, Frazier M, Gaddis J, Malmgren L, Williams S, Oldroyd H, Greene T, Sheng X, Uchida DA, Maloney CG, Stone BL. Ambulatory management of childhood asthma using a novel self-management application. Pediatrics. 2019 Jun;143(6):e20181711. doi: 10.1542/peds.2018-1711.peds.2018-1711
    1. Amir O, Grosz BJ, Gajos KF, Swenson SM, Sanders LM. From care plans to care coordination: opportunities for computer support of teamwork in complex healthcare. Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems; CHI '15; April 18-23, 2015; Seoul, Republic of Korea. 2015. pp. 1419–1428.
    1. Damschroder LJ, Aron DC, Keith RE, Kirsh SR, Alexander JA, Lowery JC. Fostering implementation of health services research findings into practice: a consolidated framework for advancing implementation science. Implement Sci. 2009 Aug 07;4:50. doi: 10.1186/1748-5908-4-50. 1748-5908-4-50
    1. Nilsen P. Making sense of implementation theories, models and frameworks. Implement Sci. 2015 Apr 21;10:53. doi: 10.1186/s13012-015-0242-0. 10.1186/s13012-015-0242-0
    1. Varsi C, Ekstedt M, Gammon D, Ruland CM. Using the consolidated framework for implementation research to identify barriers and facilitators for the implementation of an internet-based patient-provider communication service in five settings: a qualitative study. J Med Internet Res. 2015 Nov 18;17(11):e262. doi: 10.2196/jmir.5091. v17i11e262
    1. Kirk MA, Kelley C, Yankey N, Birken SA, Abadie B, Damschroder L. A systematic review of the use of the Consolidated Framework for Implementation Research. Implement Sci. 2016 May 17;11:72. doi: 10.1186/s13012-016-0437-z. 10.1186/s13012-016-0437-z
    1. Landes SJ, McBain SA, Curran GM. An introduction to effectiveness-implementation hybrid designs. Psychiatry Res. 2019 Oct;280:112513. doi: 10.1016/j.psychres.2019.112513. S0165-1781(19)30680-8
    1. Garth B, Murphy GC, Reddihough DS. Perceptions of participation: child patients with a disability in the doctor-parent-child partnership. Patient Educ Couns. 2009 Jan;74(1):45–52. doi: 10.1016/j.pec.2008.07.031.S0738-3991(08)00387-X
    1. Lin JL, Clark CL, Halpern-Felsher B, Bennett PN, Assis-Hassid S, Amir O, Nunez YC, Cleary NM, Gehrmann S, Grosz BJ, Sanders LM. Parent perspectives in shared decision-making for children with medical complexity. Acad Pediatr. 2020;20(8):1101–1108. doi: 10.1016/j.acap.2020.06.008. S1876-2859(20)30247-3
    1. Powell BJ, Waltz TJ, Chinman MJ, Damschroder LJ, Smith JL, Matthieu MM, Proctor EK, Kirchner JE. A refined compilation of implementation strategies: results from the Expert Recommendations for Implementing Change (ERIC) project. Implement Sci. 2015 Feb 12;10:21. doi: 10.1186/s13012-015-0209-1. 10.1186/s13012-015-0209-1
    1. Damschroder LJ, Lowery JC. Evaluation of a large-scale weight management program using the consolidated framework for implementation research (CFIR) Implement Sci. 2013 May 10;8:51. doi: 10.1186/1748-5908-8-51. 1748-5908-8-51
    1. Varsi C, Solberg Nes L, Kristjansdottir OB, Kelders SM, Stenberg U, Zangi HA, Børøsund E, Weiss KE, Stubhaug A, Asbjørnsen RA, Westeng M, Ødegaard M, Eide H. Implementation strategies to enhance the implementation of eHealth programs for patients with chronic illnesses: realist systematic review. J Med Internet Res. 2019 Sep 27;21(9):e14255. doi: 10.2196/14255. v21i9e14255
    1. Reading MJ, Merrill JA. Converging and diverging needs between patients and providers who are collecting and using patient-generated health data: an integrative review. J Am Med Inform Assoc. 2018 Jun 01;25(6):759–771. doi: 10.1093/jamia/ocy006. 4869761
    1. Buis L. Implementation: the next giant hurdle to clinical transformation with digital health. J Med Internet Res. 2019 Nov 20;21(11):e16259. doi: 10.2196/16259. v21i11e16259
    1. Haverhals LM, Gilman C, Manheim C, Bauers C, Kononowech J, Levy C. Implementation of VA's Life-Sustaining Treatment Decisions Initiative: facilitators and barriers to early implementation across seven VA medical centers. J Pain Symptom Manage. 2021 Jul;62(1):125–133.e2. doi: 10.1016/j.jpainsymman.2020.10.034.S0885-3924(20)30863-0
    1. Sarkar U, Lee JE, Nguyen KH, Lisker S, Lyles CR. Barriers and facilitators to the implementation of virtual reality as a pain management modality in academic, community, and safety-net settings: qualitative analysis. J Med Internet Res. 2021 Sep 22;23(9):e26623. doi: 10.2196/26623. v23i9e26623
    1. Bergs J, Lambrechts F, Simons P, Vlayen A, Marneffe W, Hellings J, Cleemput I, Vandijck D. Barriers and facilitators related to the implementation of surgical safety checklists: a systematic review of the qualitative evidence. BMJ Qual Saf. 2015 Dec;24(12):776–86. doi: 10.1136/bmjqs-2015-004021.bmjqs-2015-004021
    1. Steele Gray C, Gill A, Khan AI, Hans PK, Kuluski K, Cott C. The electronic patient reported outcome tool: testing usability and feasibility of a mobile app and portal to support care for patients with complex chronic disease and disability in primary care settings. JMIR Mhealth Uhealth. 2016 Jun 02;4(2):e58. doi: 10.2196/mhealth.5331. v4i2e58
    1. Medicare and Medicaid programs; Electronic Health Record Incentive Program-Stage 3 and Modifications to Meaningful Use in 2015 Through 2017. Fed Regist. 2015 Oct;80(200):62761–62955.
    1. Public law 114–255. Library of Congress. [2022-08-08]. .
    1. Adler-Milstein J, Nong Paige. Early experiences with patient generated health data: health system and patient perspectives. J Am Med Inform Assoc. 2019 Oct 01;26(10):952–959. doi: 10.1093/jamia/ocz045. 5476189
    1. Gordon WJ, Landman A, Zhang H, Bates DW. Beyond validation: getting health apps into clinical practice. NPJ Digit Med. 2020;3:14. doi: 10.1038/s41746-019-0212-z. doi: 10.1038/s41746-019-0212-z.212
    1. Walker J, Leveille S, Bell S, Chimowitz H, Dong Z, Elmore JG, Fernandez L, Fossa A, Gerard M, Fitzgerald P, Harcourt K, Jackson S, Payne TH, Perez J, Shucard H, Stametz R, DesRoches C, Delbanco T. OpenNotes after 7 years: patient experiences with ongoing access to their clinicians' outpatient visit notes. J Med Internet Res. 2019 May 06;21(5):e13876. doi: 10.2196/13876. v21i5e13876
    1. Smith CA, Coller RJ, Dean SM, Sklansky D, Hoonakker PLT, Smith W, Thurber AS, Ehlenfeldt BD, Kelly MM. Parent perspectives on pediatric inpatient OpenNotes. AMIA Annu Symp Proc. 2019;2019:812–819.
    1. Mackert M, Mabry-Flynn A, Champlin S, Donovan EE, Pounders K. Health literacy and health information technology adoption: the potential for a new digital divide. J Med Internet Res. 2016 Oct 04;18(10):e264. doi: 10.2196/jmir.6349. v18i10e264
    1. Berkman ND, Sheridan SL, Donahue KE, Halpern DJ, Crotty K. Low health literacy and health outcomes: an updated systematic review. Ann Intern Med. 2011 Jul 19;155(2):97–107. doi: 10.7326/0003-4819-155-2-201107190-00005.155/2/97
    1. Internet/broadband fact sheet. Pew Research Center. [2021-05-06].
    1. Khoong EC, Rivadeneira NA, Hiatt RA, Sarkar U. The use of technology for communicating with clinicians or seeking health information in a multilingual urban cohort: cross-sectional survey. J Med Internet Res. 2020 Apr 06;22(4):e16951. doi: 10.2196/16951. v22i4e16951

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