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BMC Health Services Research
Published in: BMC Health Services Research 1/2019

Open Access 01-12-2019 | Care | Research article

Health care stakeholder perspectives regarding the role of a patient navigator during transition to adult care

Authors: Gina Dimitropoulos, Elizabeth Morgan-Maver, Brooke Allemang, Kyleigh Schraeder, Shannon D. Scott, Jorge Pinzon, Gail Andrew, Gregory Guilcher, Lorraine Hamiwka, Eddy Lang, Kerry McBrien, Alberto Nettel-Aguirre, Daniele Pacaud, Lonnie Zwaigenbaum, Andrew Mackie, Susan Samuel

Published in: BMC Health Services Research | Issue 1/2019

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Abstract

Background

Transition to adult care represents a vulnerable period for young people with special health care needs as they navigate multiple life transitions and developmental issues. Patient navigators are a promising intervention designed to facilitate the transfer from pediatric to adult care. However, consistent definitions, key tasks, roles and responsibilities are lacking in guiding the scope of practice and the implementation of patient navigators.

Methods

Fundamental qualitative description was utilized in this study to identify perceptions from health care providers about implementing a patient navigator service for young people with special health care needs in transition to adult care. A purposive sample of health care providers with a variety of backgrounds within pediatric and adult systems in Alberta, Canada were recruited. Semi-structured interviews with participants were analyzed using thematic analysis to inductively identify perceptions regarding the role of patient navigators.

Results

A total of 43 health care providers highlighted the need for a patient navigator service to encompass 4 key stages for young people with special health care needs transitioning from pediatric to adult services: (1) identification of young people with special health care needs and families requiring support, (2) preparation for transfer, (3) health system navigation and, (4) post-transfer support.

Conclusions

The results of this qualitative study provide guidance for the development of patient navigator interventions for young people with special health care needs, as well as provide support for current transition services offered across Canada.
Appendix
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Literature
1.
McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics. 1998;102(1 Pt 1):137–40.PubMedCrossRef
2.
Canadian Association of Pediatric Health Centres. A guideline for transition from Paediatric to adult health Care for Young people with special health care needs: a National Approach. Canadian Association of Pediatric Health Centres; 2016.
3.
Kaufman M, Pinzon J. Transition to adult care for young people with special health care needs. Paediatr Child Health. 2007;12(9):785–8.CrossRef
4.
Reiss J, Gibson R. Health care transition: destinations unknown. Pediatrics. 2002;110(6):1307–14.PubMed
5.
Callahan ST, Cooper WO. Changes in ambulatory health care use during the transition to young adulthood. J Adolesc Health. 2010;46(5):407–13.PubMedCrossRef
6.
Lotstein DS, Seid M, Klingensmith G, et al. Transition from pediatric to adult Care for Young people diagnosed with type 1 diabetes in adolescence. Pediatrics. 2013;131(4):e1062–e70.PubMedPubMedCentralCrossRef
7.
Mackie AS, Ionescu-Ittu R, Therrien J, et al. Children and adults with congenital heart disease lost to follow-up: who and when? Circulation. 2009;120(4):302–9.PubMedCrossRef
8.
Samuel SM, Nettel-Aguirre A, Hemmelgarn BR, et al. Graft failure and adaptation period to adult healthcare centers in pediatric renal transplant patients. Transplantation. 2011;91(12):1380–5.PubMedCrossRef
9.
Van Walleghem N, Macdonald CA, Dean HJ. Evaluation of a systems navigator model for transition from pediatric to adult care for young adults with type 1 diabetes. Diabetes Care. 2008;31(8):1529–30.PubMedPubMedCentralCrossRef
10.
Prestidge C, Romann A, Djurdjev O, Matsuda-Abedini M. Utility and cost of a renal transplant transition clinic. Pediatr Nephrol. 2012;27(2):295–302.PubMedCrossRef
11.
Chu PY, Maslow GR, von Isenburg M, Chung RJ. Systematic review of the impact of transition interventions for adolescents with chronic illness on transfer from pediatric to adult healthcare. J Pediatr Nurs. 2015;30(5):e19–27.PubMedPubMedCentralCrossRef
12.
Weissberg-Benchell J, Shapiro JB. A review of interventions aimed at facilitating successful transition planning and transfer to adult care among young people with chronic illness. Pediatr Ann. 2017;46(5):e182–e7.PubMedCrossRef
13.
Steinbeck KS, Shrewsbury VA, Harvey V, et al. A pilot randomized controlled trial of a post-discharge program to support emerging adults with type 1 diabetes mellitus transition from pediatric to adult care. Pediatr Diabetes. 2015;16(8):634–9.PubMedCrossRef
14.
Loskutova NY, Tsai AG, Fisher EB, et al. Patient navigators connecting patients to community resources to improve diabetes outcomes. J Am Board Fam Med. 2016;29(1):78–89.PubMedCrossRef
15.
Hankins JS, Osarogiagbon R, Adams-Graves P, et al. A transition pilot program for adolescents with sickle cell disease. J Pediatr Health Care. 2012;26(6):e45–e9.PubMedCrossRef
16.
Egan M, Anderson S, McTaggart J. Community navigation for stroke survivors and their care partners: description and evaluation. Top Stroke Rehabil. 2010;17(3):183–90.PubMedCrossRef
17.
Freund KM, Battaglia TA, Calhoun E, et al. Impact of patient navigation on timely Cancer care: the patient navigation research program. J Natl Cancer Inst. 2014;106(6):dju115–dju.PubMedPubMedCentralCrossRef
18.
Freeman HP. The history, principles, and future of patient navigation: commentary. Semin in Oncol Nurs. 2013;29(2):72–5.CrossRef
19.
Cohen E, Lacombe-Duncan A, Spalding K, et al. Integrated complex care coordination for children with medical complexity: a mixed-methods evaluation of a tertiary care-community collaboration. BMC Health Serv Res. 2012;12:366.PubMedPubMedCentralCrossRef
20.
Mackie AS, Rempel GR, Kovacs AH, et al. A cluster randomized trial of a transition intervention for adolescents with congenital heart disease: rationale and design of the CHAPTER 2 study. BMC Cardiovasc Disord. 2016;16:127.PubMedPubMedCentralCrossRef
21.
Palfrey JS, Sofis LA, Davidson EJ, et al. The pediatric Alliance for coordinated care: evaluation of a medical home model. Pediatrics. 2004;113(Suppl 5):1507–16.PubMed
22.
Mackie AS, Rempel GR, Kovacs AH, et al. Transition intervention for adolescents with congenital heart disease. J Am Coll Cardiol. 2018;71(16):1768–77.PubMedCrossRef
23.
24.
Dohan D, Schrag D. Using navigators to improve care of underserved patients. Cancer. 2005;104(4):848–55.PubMedCrossRef
25.
26.
Etikan I, Musa SA, Alkassim RS. Comparison of convenience sampling and puposive sampling. Am J Theor Appl Stat. 2016;5(1):1–4.CrossRef
27.
Samuel S, Dimitropoulos G. Innovations in transition to adult care: solutions for a complex problem. Maternal newborn child and young people strategic clinical network transition working group meeting; 2017; Calgary.
28.
Lambert SD, Loiselle CG. Combining individual interviews and focus groups to enhance data richness. J Adv Nurs. 2008;62(2):228–37.PubMedCrossRef
29.
Malterud K, Siersma VD, Guassora AD. Sample size in qualitative interview studies: guided by information power. Qual Health Res. 2016;26(13):1753–60.PubMedCrossRef
30.
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psych. 2006;3(2):77–101.CrossRef
31.
Guest G, MacQueen KM, Namey EE. Applied thematic analysis. Thousand Oaks, CA: SAGE Publications; 2012.CrossRef
32.
Elliott RF, Fischer CT, Rennie DL. Evolving guidelines for publication of qualitative research studies in psychology and related fields. Br J Clin Psychol. 1999;38:215–29.PubMedCrossRef
33.
Elo S, Kääriäinen M, Kanste O, Pölkki T, Utriainen K, Kyngäs H. Qualitative content analysis: a focus on trustworthiness. SAGE Open. 2014;4(1):2158244014522633.CrossRef
34.
Guevara JP, Rothman B, Brooks E, et al. Patient navigation to facilitate early intervention referral completion among poor urban children. Fam Syst Health. 2016;34(3):281–6.PubMedCrossRef
35.
Anderson JE, Larke SC. Navigating the mental health and addictions maze: a community-based pilot project of a new role in primary mental health care. Mental Health Fam Med. 2009;6(1):15–9.
36.
Natale-Pereira A, Enard KR, Nevarez L, Jones LA. The role of patient navigators in eliminating health disparities. Cancer. 2011;117(15 Suppl):3543–52.PubMedPubMedCentral
37.
Percac-Lima S, Milosavljevic B, Oo SA, et al. Patient navigation to improve breast Cancer screening in Bosnian refugees and immigrants. J Immigr Minor Health. 2012;14(4):727–30.PubMedCrossRef
38.
Hendren S, Chin N, Fisher S, et al. Patients’ barriers to receipt of Cancer care, and factors associated with needing more assistance from a patient navigator. J Natl Med Assoc. 2011;103(8):701–10.PubMedPubMedCentralCrossRef
39.
Shaw KL, Southwood TR, McDonagh JE. User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology. 2004;43(6):770–8.PubMedCrossRef
40.
Valenzuela JM, Vaughn LM, Crosby LE, Strong H, Kissling A, Mitchell MJ. Understanding the experiences of youth living with sickle cell disease: a photovoice pilot. Family Community Health. 2013;36(2):97–108.PubMedPubMedCentralCrossRef
41.
Al-Yateem N. Child to adult: transitional care for young adults with cystic fibrosis. Br J Nurs. 2012;21(14):850–4.PubMedCrossRef
42.
Muller-Kagi E, Albisetti M, Koppitz AL. Adherence to treatment in adolescents with heamophilia: a qualitative study. J Hemoph Pract. 2014;1(2):15–20.CrossRef
43.
44.
Kieckhefer GM, Trahms CM. Supporting development of children with chronic conditions: from compliance toward shared management. Pediatr Nurs. 2000;26(4):354–81.PubMed
45.
Blum RW, Garell D, Hodgman CH, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine J Adolesc Health. 1993;14(7):570–6.PubMedCrossRef
46.
Mazurek MO, Brown R, Curran A, Sohl K. ECHO autism: a new model for training primary care providers in best-practice Care for Children with Autism. Clin Pediatr. 2016;56(3):247–56.CrossRef
47.
Schraeder KE, Brown JB, Reid GJ. Perspectives on monitoring young people with ongoing mental health problems in primary health care: family physicians are "out of the loop". J Behav Health Serv Res. 2018;45(2):219–36.PubMed
48.
McLaughlin SE, Machan J, Fournier P, et al. Transition of adolescents with chronic health conditions to adult primary care: factors associated with physician acceptance. J Pediatr Rehab Med. 2014;7(1):63–70.
49.
Bhawra J, Toulany A, Cohen E, Hepburn CM, Guttmann A. Primary care interventions to improve transition of youth with chronic health conditions from paediatric to adult healthcare: a systematic review. BMJ Open. 2016;6(5):1–8.CrossRef
50.
O’Brien D, Harvey K, Howse J, Reardon T, Creswell C. Barriers to managing child and adolescent mental health problems: a systematic review of primary care practitioners’ perceptions. Br J Gen Pract. 2016;66(651):e693–707.PubMedPubMedCentralCrossRef
51.
Okumura MJ, Kerr EA, Cabana MD, Davis MM, Demonner S, Heisler M. Physician views on barriers to primary Care for Young Adults with Childhood-Onset Chronic Disease. Pediatrics. 2010;125(4):e748–54.PubMedCrossRef
52.
Scal P. Transition for youth with chronic conditions: primary care physicians’ approaches. Pediatrics. 2002;110(6 Pt 2):1315–21.PubMed
Metadata
Title
Health care stakeholder perspectives regarding the role of a patient navigator during transition to adult care
Authors
Gina Dimitropoulos
Elizabeth Morgan-Maver
Brooke Allemang
Kyleigh Schraeder
Shannon D. Scott
Jorge Pinzon
Gail Andrew
Gregory Guilcher
Lorraine Hamiwka
Eddy Lang
Kerry McBrien
Alberto Nettel-Aguirre
Daniele Pacaud
Lonnie Zwaigenbaum
Andrew Mackie
Susan Samuel
Publication date
01-12-2019
Publisher
BioMed Central
Keyword
Care
Published in
BMC Health Services Research / Issue 1/2019
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/s12913-019-4227-6

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