Restricted accessResearch articleFirst published online 2014-07
Bridging Worlds,Breaking Rules: Clinician Perspectives on Transitioning Young People with Perinatally Acquired HIV Into Adult Care in a Low Prevalence Setting
The first generation of young people with perinatally acquired HIV is moving into adulthood, precipitating a transition from pediatric to adult care. As the first research appraisal of Australian clinician perspectives on this process, this article makes a unique contribution by examining the particular challenges associated with transitioning this population into adult care in regions of low HIV prevalence among young people. Qualitative interviews were conducted with twelve pediatric and adult care clinicians and analyzed for dominant and diverging themes. Clinicians anticipated significant client vulnerabilities during transition and worked beyond the boundaries of their roles and service parameters to keep clients engaged as they moved between pediatric and adult care. Strategies to strengthen the transition process focused on communication and teamwork, informed by and responsive to the needs of individual young people and their families. Clinicians working in settings with very small numbers of young people with HIV must advocate for a hidden minority with little potential for gaining large scale recognition or system changes. New conversations are needed to design a stronger and more sustainable transition process for both young people living with HIV, and their clinicians who care for them, in low prevalence settings.
Get full access to this article
View all access options for this article.
References
1.
WHO. HIV and adolescents: Guidance for HIV testing and counselling and care for adolescents living with HIV. World Health Organisation: Geneva, 2013. http://www.who.int/hiv/pub/guidelines/adolescents/en/ (Accessed April11, 2014).
2.
Editorial. Caring for those growing up with HIV. Lancet, 2013; 382:2.
3.
UNICEF. Young people aged 15–24 living with HIV. UNICEF childinfo.org: New York City, 2011. http://www.childinfo.org/files/Table_Young_People_Childinfo_Dec_2012.pdf (Accessed April11, 2014).
4.
GrayL, NewellML, ThorneC, et al.Fluctuations in symptoms in human immunodeficiency virus-infected children: The first 10 years of life. Pediatrics, 2001; 108:116–122.
5.
AgwuAL, FairlieL. Antiretroviral treatment, management challenges and outcomes in perinatally HIV-infected adolescents. J Int AIDS Soc, 2013; 16:18579.
6.
FairCD, SullivanK, GattoA. Best practices in transitioning youth with HIV: Perspectives of pediatric and adult infectious disease care providers. Psychol Health Med, 2010; 15:515–527.
7.
WienerLS, KohrtB-A, BattlesHB, et al.The HIV experience: Youth identified barriers for transitioning from pediatric to adult care. J Pediatr Psychol, 2011; 36:141–154.
8.
CerviaJS. Easing the transition of HIV-infected adolescents to adult care. AIDS Patient Care STDS, 2013; 27:692–696.
9.
MillerA, ZieglerJ, PalasanthiranP. Paediatric HIV in Australia: 30 years of a changing landscape. HIV Australia, 2013; 11:25–28. http://www.afao.org.au/library/hiv-australia/volume-11/vol.-11-number-1/paediatric-hiv-in-australia#.UykHavmSx8E (Accessed April11, 2014).
10.
PerssonA, NewmanCE, MillerA. Caring for ‘underground’ kids: Qualitative interviews with clinicians about key issues for young people growing up with perinatally acquired HIV in Australia. Int J Adoles Youth, 2014; 1–15.
11.
MachadoDM, SucciRC, TuratoER. Transitioning adolescents living with HIV/AIDS to adult-oriented health care: An emerging challenge. J Pediatria, 2010; 86:465–472.
12.
FegranL, HallEOC, UhrenfeldtL, et al.Adolescents' and young adults' transition experiences when transferring from paediatric to adult care: A qualitative metasynthesis. Int J Nurs Stud, 2014; 51:123–135.
13.
ZurynskiYA, ElliottEJ. Challenges of transition to adult health services for patients with rare diseases. Med J Aust, 2013; 198:575–576.
14.
ScalP. Transition for youth with chronic conditions: Primary care physicians' approaches. Pediatrics, 2002; 110:1315–1321.
15.
FosterC, JuddA, TookeyP, et al.Young people in the United Kingdom and Ireland with perinatally acquired HIV: The pediatric legacy for adult services. AIDS Patient Care STDS, 2009; 23:159–166.
16.
BundockH, FidlerS, ClarkeS, et al.Crossing the divide: Transition care services for young people with HIV-their views. AIDS Patient Care STDS, 2011; 25: 465–473.
17.
BrymanA. Social Research Methods; 4th ed.; Oxford University Press, 2012.
18.
PerssonA, NewmanC. When HIV-positive children grow up: A critical analysis of the transition literature in developed countries. Qual Health Res, 2012; 22:656–667.
19.
BraunV, ClarkeV. Using thematic analysis in qualitative psychology. Qual Res Psychol, 2006; 3:77–101.
20.
ThorneS. Interpretive description; Left Coast Press: Walnut Creek, California, 2008.
21.
Commonwealth of Australia 2010. Sixth National HIV Strategy: 2010–2013. Commonwealth Department of Health and Ageing. http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-national-strategies-2010-hiv/$File/hiv.pdf (Accessed April11, 2014).
22.
Committee on Pediatric AIDS. Transitioning HIV-infected youth into adult health care. Pediatrics, 2013; 132:192–197.
23.
HuangJS, GottschalkM, PianM, et al.Transition to adult care: Systematic assessment of adolescents with chronic illnesses and their medical teams. J Pediatrics, 2011; 159:994–998,e992.
24.
ReissJG, GibsonRW, WalkerLR. Health care transition: Youth, family, and provider perspectives. Pediatrics, 2005; 115:112–120.
25.
RosenD. Between two worlds: Bridging the cultures of child health and adult medicine. J Adolesc Health, 1995; 17:10–16.
26.
Weissberg-BenchellJ, WolpertH, AndersonBJ. Transitioning from pediatric to adult care: A new approach to the post-adolescent young person with type 1 diabetes. Diabetes Care, 2007; 30:2441–2446.
27.
OswaldD, GillesD, CannadyM, et al.Youth with special health care needs: Transition to adult health care services. Matern Child Health J, 2012; 1–9.
28.
WatsonR, ParrJR, JoyceC, et al.Models of transitional care for young people with complex health needs: A scoping review. Child Care Health Dev, 2011; 37:780–791.
29.
ValenzuelaJM, BuchananCL, RadcliffeJ, et al.Transition to adult services among behaviorally infected adolescents with HIV. A qualitative study. J Pediatr Psychol, 2011; 36:134–140.
30.
DowshenN, D'AngeloL. Health care transition for youth living with HIV/AIDS. Pediatrics, 2011; 128:762–771.
31.
The Kirby Institute. HIV/AIDS, viral hepatitis and sexually transmissible infections in Australia: Annual Surveillance Report 2013. The Kirby Institute, The University of New South Wales, Sydney, NSW. http://www.kirby.unsw.edu.au/sites/default/files/hiv/resources/2013AnnualSurvReport.pdf (Accessed April11, 2014).
32.
GagliardoC, MurrayM, SaimanL, et al.Initiation of antiretroviral therapy in youth with HIV: A U.S.-based provider survey. AIDS Patient Care STDS, 2013; 27:498–502.
33.
de WitJBF, AdamP. Revolution or evolution: What can approaches based on the use of antiretroviral drugs contribute to HIV prevention in gay communities in high income countries? In: Biomedical Advances in HIV Prevention: Social and Behavioral Perspectives; EatonLA, KalichmanSC, Eds., Springer, 2014.
34.
ZanoniBC, MayerKH. The adolescent and young adult HIV cascade of care in the United States: Exaggerated health disparities. AIDS Patient Care STDS, 2014; 28:128–135.
35.
SharmaN, WillenE, GarciaA, et al.Attitudes toward transitioning in youth with perinatally acquired HIV and their family caregivers. J Assoc. Nurses AIDS Care, 2014; 25:168–175.
36.
GilliamPP, EllenJM, LeonardL, et al.Transition of adolescents with HIV to adult care: Characteristics and current practices of the Adolescent Trials Network for HIV/AIDS Interventions. J Assoc Nurses AIDS Care, 2011; 22:283–294.
37.
VijayanT, BeninAL, WagnerK, et al.We never thought this would happen: Transitioning care of adolescents with perinatally acquired HIV infection from pediatrics to internal medicine. AIDS Care, 2009; 21:1222–1229.
38.
MilesK, EdwardsS, ClapsonM. Transition from paediatric to adult services: Experiences of HIV-positive adolescents. AIDS Care, 2004; 16:305–314.
39.
FieldenSJ, SheckterL, ChapmanGE, et al.Growing up: Perspectives of children, families and service providers regarding the needs of older children with perinatally-acquired HIV. AIDS Care, 2006; 18:1050–1053.
40.
CerviaJS. Transitioning HIV-infected children to adult care. J Pediatrics, 2007; 150:e1.
41.
WienerLS, ZobelM, BattlesH, et al.Transition from a pediatric HIV intramural clinical research program to adolescent and adult community-based care services: Assessing transition readiness. Soc Work Health Care, 2007; 46:1–19.
42.
BoudreauME, FisherCM. Providing effective medical and case management services to HIV-infected youth preparing to transition to adult care. J Assoc Nurses AIDS Care, 2012; 23:318–328.
43.
VaudreG, SylvainH, DelmasP, et al.Conséquences et vécu de la transition en médecine d'adultes des jeunes vivant avec le virus de l'immunodéficience humaine (VIH). Arch Pediatr, 2012; 19:786–793.
44.
JohnsonRL, BotwinickG, SellRL, et al.The utilization of treatment and case management services by HIV-infected youth. J Adolesc Health, 2003; 33:31–38.
45.
FairCD, SullivanK, GattoA. Indicators of transition success for youth living with HIV: Perspectives of pediatric and adult infectious disease care providers. AIDS Care, 2011; 23:965–970.
46.
WienerLS, ZobelM, BattlesH, et al.Transition from a pediatric HIV intramural clinical research program to adolescent and adult community-based care services:assessing transition readiness. Soc Work Health Care, 2007; 46:1–19.
47.
AndimanWA. Transition from pediatric to adult healthcare services for young adults with chronic illnesses: The special case of human immunodeficiency virus infection. J Pediatr, 2011; 159:714–719.
48.
FairCD, SullivanK, DizneyR, et al.“It's like losing a part of my family”: Transition expectations of adolescents living with perinatally acquired HIV and their guardians. AIDS Patient Care STDS, 2012; 26:423–429.
49.
MaturoD, PowellA, Major-WilsonH, et al.Development of a protocol for transitioning adolescents with HIV infection to adult care. J Pediatr Health Care, 2011; 25:16–23.
50.
MillerA, PerssonA, NewmanC. Not so alone: The importance of relationships in growing up with HIV. HIV Australia, 2014; 12:17–19. http://www.afao.org.au/library/hiv-australia/volume-13/vol.-12-number-1/not-so-alone-the-importance-of-relationships-in-growing-up-with-hiv#.UykG1fmSx8F (Accessed April11, 2014).
