scholarly journals Feasibility and Acceptability of Digital Gaming to Improve Adherence among Adolescents and Young Adults Living with HIV (Preprint)

2018 ◽  
Author(s):  
Amanda D. Castel ◽  
Saba Qasmieh ◽  
Daniel Greenberg ◽  
Nicole Ellenberger ◽  
Tyriesa Howard Howell ◽  
...  
Keyword(s):  
Young Adults ◽  
Healthcare Providers ◽  
Digital Games ◽  
Pediatric Hiv ◽  
Adolescents And Young Adults ◽  
Art Adherence ◽  
Digital Gaming ◽  
Adherence Support ◽  
Adherence Intervention ◽  
Living With Hiv

BACKGROUND An estimated 50% of adolescents and young adults (AYA) living with HIV are failing to adhere to prescribed antiretroviral treatment (ART). Digital games are effective in chronic disease management; however, research on gaming to improve ART adherence among AYA is limited. OBJECTIVE We assessed the feasibility and acceptability of videogaming to improve AYA ART adherence. METHODS Focus group discussions (FGDs) and surveys were administered to healthcare providers and AYA aged 13-24 years living with HIV at a pediatric HIV program in Washington, DC. During FGDs, AYA viewed demonstrations of three game prototypes linked to portable Wisepill medication dispensers. Content analysis strategies and thematic coding were used to identify adherence themes and gaming acceptance and feasibility. Likert scale and descriptive statistics were used to summarize response frequencies. RESULTS Providers (n=10) identified common adherence barriers and strategies, including use of gaming analogies to improve AYA ART adherence. Providers supported exploration of digital gaming as an adherence intervention. Six FGDs with 12 AYA identified disclosure of HIV status and irregular daily schedules as major barriers to ART and use of alarms and pillboxes as reminders. Most AYA were "very or somewhat likely" to use the demonstrated game prototypes to help with ART adherence and desired challenging, individually-tailored, user-friendly games with in-game incentives. Game prototypes were modified accordingly. CONCLUSIONS AYA and their providers supported the use of digital games for ART adherence support. Individualization and in-game incentives were preferable and informed the design of an interactive technology-based adherence intervention among AYA living with HIV.

scholarly journals “How am I going to live?”: exploring barriers to ART adherence among adolescents and young adults living with HIV in Uganda

2018 ◽  
Vol 18 (1) ◽  
Author(s):  
Sarah MacCarthy ◽  
Uzaib Saya ◽  
Clare Samba ◽  
Josephine Birungi ◽  
Stephen Okoboi ◽  
...  
Keyword(s):  
Young Adults ◽  
Adolescents And Young Adults ◽  
Art Adherence ◽  
Living With Hiv

scholarly journals Opening end-of-life discussions: How to introduce Voicing My CHOiCES™, an advance care planning guide for adolescents and young adults

2014 ◽  
Vol 13 (3) ◽  
pp. 591-599 ◽  
Author(s):  
Sima Zadeh ◽  
Maryland Pao ◽  
Lori Wiener
Keyword(s):  
Young Adults ◽  
End Of Life ◽  
Advance Care Planning ◽  
Healthcare Providers ◽  
Pediatric Hiv ◽  
Adolescents And Young Adults ◽  
Care Planning ◽  
Two Phase ◽  
Advance Care ◽  
Planning Guide

AbstractObjective:Each year, more than 11,000 adolescents and young adults (AYAs), aged 15–34, die from cancer and other life-threatening conditions. In order to facilitate the transition from curative to end-of-life (EoL) care, it is recommended that EoL discussions be routine, begin close to the time of diagnosis, and continue throughout the illness trajectory. However, due largely to discomfort with the topic of EoL and how to approach the conversation, healthcare providers have largely avoided these discussions.Method:We conducted a two-phase study through the National Cancer Institute with AYAs living with cancer or pediatric HIV to assess AYA interest in EoL planning and to determine in which aspects of EoL planning AYAs wanted to participate. These results provided insight regarding what EoL concepts were important to AYAs, as well as preferences in terms of content, design, format, and style. The findings from this research led to the development of an age-appropriate advance care planning guide, Voicing My CHOiCES™.Results:Voicing My CHOiCES™: An Advanced Care Planning Guide for AYAbecame available in November 2012. This manuscript provides guidelines on how to introduce and utilize an advance care planning guide for AYAs and discusses potential barriers.Significance of Results:Successful use of Voicing My CHOiCES™ will depend on the comfort and skills of the healthcare provider. The present paper is intended to introduce the guide to providers who may utilize it as a resource in their practice, including physicians, nurses, social workers, chaplains, psychiatrists, and psychologists. We suggest guidelines on how to: incorporate EoL planning into the practice setting, identify timepoints at which a patient's goals of care are discussed, and address how to empower the patient and incorporate the family in EoL planning. Recommendations for introducing Voicing My CHOiCES™ and on how to work through each section alongside the patient are provided.

scholarly journals Digital Gaming to Improve Adherence Among Adolescents and Young Adults Living With HIV: Mixed-Methods Study to Test Feasibility and Acceptability

10.2196/10213 ◽  
2018 ◽  
Vol 6 (4) ◽  
pp. e10213 ◽  
Author(s):  
Amanda D Castel ◽  
Saba Qasmieh ◽  
Daniel Greenberg ◽  
Nicole Ellenberger ◽  
Tyriesa Howard Howell ◽  
...  
Keyword(s):  
Young Adults ◽  
Mixed Methods ◽  
Mixed Methods Study ◽  
Adolescents And Young Adults ◽  
Digital Gaming ◽  
Test Feasibility ◽  
Living With Hiv

scholarly journals Cancer in HIV-positive and HIV-negative adolescents and young adults in South Africa: a cross-sectional study

BMJ Open ◽  
2021 ◽  
Vol 11 (10) ◽  
pp. e043941
Author(s):  
Tafadzwa Dhokotera ◽  
Julia Bohlius ◽  
Matthias Egger ◽  
Adrian Spoerri ◽  
Jabulani Ronnie Ncayiyana ◽  
...  
Keyword(s):  
South Africa ◽  
Young Adults ◽  
Cross Sectional Study ◽  
Adolescents And Young Adults ◽  
Hiv Positive ◽  
Sectional Study ◽  
Hiv Status ◽  
Cross Sectional ◽  
Laboratory Service ◽  
Living With Hiv

ObjectiveTo determine the spectrum of cancers in adolescents and young adults (AYAs) living with and without HIV in South Africa.DesignCross-sectional study with cancer records provided by the National Cancer Registry (NCR) and HIV records from the National Health Laboratory Service (NHLS).Setting and participantsThe NHLS is the largest provider of pathology services in the South African public sector. The NCR is a division of the NHLS. We included AYAs (aged 10–24 years) diagnosed with cancer by public health sector laboratories between 2004 and 2014 (n=8479). HIV status was obtained through record linkages and text mining.Primary and secondary outcomesWe determined the spectrum of cancers by HIV status in AYAs. We used multivariable logistic regression to describe the association of cancer in AYAs with HIV, adjusting for age, sex, ethnicity and calendar period. We imputed (post hoc) the HIV status for AYA with unknown HIV status.Results8479 AYAs were diagnosed with cancer, HIV status was known for 45% (n=3812). Of those whose status was known, about half were HIV positive (n=1853). AYAs living with HIV were more likely to have Kaposi’s sarcoma (adjusted OR (aOR) 218, 95% CI 89.9 to 530), cervical cancer (aOR 2.18, 95% CI 1.23 to 3.89), non-Hodgkin’s lymphoma (aOR 2.12, 95% CI 1.69 to 2.66) and anogenital cancers other than cervix (aOR 2.73, 95% CI 1.27 to 5.86) than AYAs without HIV. About 44% (n=1062) of AYAs with HIV-related cancers had not been tested for HIV.ConclusionsTargeted HIV testing for AYAs diagnosed with cancer, followed by immediate start of antiretroviral therapy, screening for cervical precancer and vaccination against human papilloma virus is needed to decrease cancer burden in AYAs living with HIV in South Africa.

scholarly journals Call For Life, Uganda: Acceptability Of A Mobile Phone Support To Promote Adherence To Anti-Retroviral Therapy For Young Adults In A Randomised Control Trial: A Qualitative Review (Preprint)

2019 ◽  
Author(s):  
Agnes Bwanika Naggirinya
Keyword(s):  
Human Immunodeficiency Virus ◽  
Young Adults ◽  
Mobile Phone ◽  
Interactive Voice Response ◽  
Text Messages ◽  
Randomised Control Trial ◽  
People Living With Hiv ◽  
Art Adherence ◽  
Immunodeficiency Virus ◽  
Living With Hiv

BACKGROUND : Adherence to treatment is critical to obtain successful treatment outcomes. While factors influencing antiretroviral therapy (ART) adherence vary, young adults are less likely to adhere because of psychosocial issues such as stigma, ART-related side effects as well as lack of access to treatment. Call for Life mHealth tool (C4LU), is a mobile phone- based technology that provides text messages or Interactive Voice Response (IVR) functionalities, through a web-interface and offers four modules including pill reminders, clinic visit reminders, health tips and symptom self-reporting support. Within a randomised control trial, we assessed perspectives and experiences of young adults living with human immunodeficiency virus towards the C4LU- system, with the objective to improve ART adherence among young people living with HIV with help of mHealth tool. OBJECTIVE To improve ART adherence among young people living with HIV through use of mHealth tool. METHODS This was an exploratory qualitative design at two study sites nested within an open label randomized controlled trial (RCT) entitled: “Improving outcomes in human immunodeficiency virus (HIV) patients using mobile phone based interactive software support “Call for Life study A total of 600 participants were randomly assigned 1:1 to either Standard of Care (SoC)- face-to-face counsellor adherence support or SoC plus mHealth call for life system (C4LU). C4LU uses Interactive voice response or text messages delivered via mobile phone. The qualitative study explored perspectives and experiences of young adults (18-24 years) towards the mHealth tool “C4LU”. A purposive sample of twenty-one vulnerable youth, seventeen from the intervention and four from the SoC arm were selected. We used semi-structured interviews to facilitate an in-depth exploration of experiences of young adults regarding C4LU-System. Thirteen in-depth interviews and one focus group discussion were conducted. The young adults were from four categories of population of interest that were targeted to be offered specialised care: young adults on PMTCT, switching to / or on second line ART, positive partners in a discordant relationship and initiating 1st line ART. Data was managed using Nvivo version 11 and analysed thematically. RESULTS C4LU-mHealth tool was perceived as an acceptable intervention for young adults. While on the system, participants reported: improvement in medication adherence, strengthened doctor /clinician -patient relationships, increased health knowledge through educative health tips. Appointment reminders and symptom reporting were singled out as beneficial because the system would address and manage the problems of forgetfulness, and stigma related issues. CONCLUSIONS The system was described as an acceptable and feasible strategy to improve ART adherence and retention among young adults in resource limited settings CLINICALTRIAL Trial Registration: ClinicalTrials.gov NCT 02953080

Day-to-Day Decision Making by Adolescents and Young Adults with Cancer

2022 ◽  
pp. 275275302110687
Author(s):  
Kimberly A. Pyke-Grimm ◽  
Linda S. Franck ◽  
Bonnie Halpern-Felsher ◽  
Robert E. Goldsby ◽  
Roberta S. Rehm
Keyword(s):  
Decision Making ◽  
Young Adults ◽  
Participant Observation ◽  
Healthcare Providers ◽  
Adolescents And Young Adults ◽  
Structured Interviews ◽  
Self Advocacy ◽  
Daily Lives ◽  
Life Threatening Illness ◽  
The Impact

Background: Adolescents and young adults (AYAs) with cancer must negotiate the transition between childhood and adulthood while dealing with a life-threatening illness. AYA involvement in decision making varies depending on the type of decision and when decisions occur during treatment, and evidence suggests that AYAs want to be involved in decision making. Objective: To explore involvement of AYAs with cancer in day-to-day decisions affected by their cancer and treatment. Methods: This qualitative study used interpretive focused ethnography within the sociologic tradition, informed by symbolic interactionism. Semi-structured interviews and informal participant observation took place at two quaternary pediatric oncology programs. Results: Thirty-one interviews were conducted with 16 AYAs ages 15 to 20 years. Major day to day decision-making categories identified included: (1) mental mindset, (2) self-care practices, (3) self-advocacy, and (4) negotiating relationships. Participants described how they came to grips with their illness early on and decided to fight their cancer. They described decisions they made to protect their health, how they advocated for themselves and decisions they made about relationships with family and friends. Conclusions: Through day-to-day decisions, participants managed the impact of cancer and its treatment on their daily lives. Research should focus on developing and implementing interventions to empower AYAs to participate in day-to-day decisions that will affect how they manage their cancer, its treatment and ultimately their outcomes. Implications for Practice: Healthcare providers can facilitate AYA's participation in day-to-day decision making through encouraging autonomy and self-efficacy by providing support and through effective communication.

scholarly journals Adaptation of an HIV Medication Adherence Intervention for Adolescents and Young Adults

2014 ◽  
Vol 21 (2) ◽  
pp. 191-205 ◽  
Author(s):  
Idia B. Thurston ◽  
Laura M. Bogart ◽  
Madeline Wachman ◽  
Elizabeth F. Closson ◽  
Margie R. Skeer ◽  
...  
Keyword(s):  
Young Adults ◽  
Medication Adherence ◽  
Adolescents And Young Adults ◽  
Adherence Intervention ◽  
Hiv Medication

scholarly journals Health Technology-Enabled Interventions for Adherence Support and Retention in Care Among US HIV-Infected Adolescents and Young Adults: An Integrative Review

2017 ◽  
Vol 21 (11) ◽  
pp. 3154-3171 ◽  
Author(s):  
Ann-Margaret Dunn Navarra ◽  
Marya Viorst Gwadz ◽  
Robin Whittemore ◽  
Suzanne R. Bakken ◽  
Charles M. Cleland ◽  
...  
Keyword(s):  
Young Adults ◽  
Retention In Care ◽  
Health Technology ◽  
Adolescents And Young Adults ◽  
Integrative Review ◽  
Adherence Support

scholarly journals Connecting Youth and Young Adults to Optimize Antiretroviral Therapy Adherence (YouTHrive): Protocol for a Randomized Controlled Trial

10.2196/11502 ◽  
2019 ◽  
Vol 8 (7) ◽  
pp. e11502 ◽  
Author(s):  
K J Horvath ◽  
R F MacLehose ◽  
A Martinka ◽  
J DeWitt ◽  
L Hightow-Weidman ◽  
...  
Keyword(s):  
Controlled Trial ◽  
Phase 1 ◽  
Art Adherence ◽  
Phase 2 ◽  
Phase 3 ◽  
Randomized Controlled ◽  
Adherence Intervention ◽  
Living With Hiv ◽  
Beta Testing ◽  
Us Cities

Background Despite intensive efforts to engage people living with HIV in the United States, less than half of the youth aged 13 to 24 years achieve viral suppression. There is a clear and continued need for innovative behavioral programs that support optimizing adherence among young persons with HIV. Objective There are 3 phases of this project. Phase 1 involves conducting focus groups to obtain feedback from youth about an existing technology-based antiretroviral therapy (ART) adherence intervention. Phase 2 will be used to conduct beta testing with youth to refine and finalize the YouTHrive (YT) intervention. Phase 3 is a randomized controlled trial (RCT) to test the efficacy of the YT intervention among youth living with HIV (YLWH). Methods In phase 1, we will conduct 6 focus groups with approximately 8 youths (aged 15-19 years) and young adults (aged 20-24 years), each in 3 US cities to obtain (1) feedback from YLWH about the look and feel and content of an existing adult-focused Web-based ART adherence intervention and (2) suggestions for adapting the intervention for YLWH similar to themselves. Phase 2 will involve updating the existing intervention to include features and functionality recommended by YLWH in phase 1; it will conclude with beta testing with 12 participants to gain feedback on the overall design and ensure proper functionality and ease of navigation. For phase 3, we will enroll 300 YLWH in 6 US cities (Atlanta, Chicago, Houston, New York City, Philadelphia, and Tampa) into a 2-arm prospective RCT. Participants will be randomized 1:1 to YT intervention or control group. The randomization sequence will be stratified by city and use random permuted blocks of sizes 2 and 4. Participants randomized to the control condition will view a weekly email newsletter on topics related to HIV, with the exception of ART adherence, for 5 months. Participants randomized to the YT intervention condition will be given access to the YT site for 5 months. Study assessments will occur at enrollment and 5, 8, and 11 months post enrollment. The primary outcome that will be assessed is sustained viral load (VL), defined as the proportion of participants in each study arm who have suppressed VL at both the 5- and 11-month assessment; the secondary outcome that will be assessed is suppressed VL at both the 5- and 11-month assessment between drug-using and nondrug-using participants assigned to the YT intervention arm. Results Participant recruitment began in May 2017 for phase 1 of the study. The data collection for aim 3 is anticipated to end in April 2020. Conclusions The efficacy trial of the YT intervention will help to fill gaps in understanding the efficacy of mobile interventions to improve ART adherence among at-risk populations. Trial Registration ClinicalTrials.gov NCT03149757; https://clinicaltrials.gov/ct2/show/NCT03149757 (Archived by WebCite at http://www.webcitation.org/73pw57Cf1) International Registered Report Identifier (IRRID) DERR1-10.2196/11502

scholarly journals WYZ: Results of a pilot study of a mobile health application for engagement in care and antiretroviral therapy adherence among youth and young adults living with HIV (Preprint)

2020 ◽  
Author(s):  
Parya Saberi ◽  
Nadra E. Lisha ◽  
Xavier A. Erguera ◽  
Estie S. Hudes ◽  
Mallory O. Johnson ◽  
...  
Keyword(s):  
Young Adults ◽  
Antiretroviral Therapy ◽  
San Francisco ◽  
Mobile Health ◽  
Pilot Trial ◽  
Hiv Care ◽  
Art Adherence ◽  
Engagement In Care ◽  
Youth And Young Adults ◽  
Living With Hiv

BACKGROUND Youth are globally recognized as being vulnerable to HIV. Younger age has been correlated with worse health outcomes. Mobile health (mHealth) delivered interventions have the potential to meet youth where they are, using a device they already access. OBJECTIVE Using pre-defined benchmarks, we sought to evaluate the feasibility and acceptability of WYZ, an mHealth application, for improved engagement in care and antiretroviral therapy (ART) adherence among youth and young adults living with HIV (YLWH). WYZ was designed and developed with input from YLWH using a Human-Centered Design approach and based on the Information, Motivation, Behavioral Skills framework to address common barriers to care and ART adherence among YLWH. METHODS We recruited YLWH (18–29 years old) in the San Francisco Bay Area to take part in a six-month pilot trial. Their participation included completing a baseline and exit survey and participating in seven phone check-ins about their use of WYZ. RESULTS YLWH (N= 79) reported high levels of feasibility and acceptability with WYZ use. We met pre-defined benchmarks for recruitment, mean log-ins per week, tracking ART adherence, posting chat topics, and app crashes reported. Ease of app download, install, and set up, as well as comfort with security, privacy, and anonymity were highly rated. Additionally, participants reported high satisfaction for a research project that was remotely conducted. Participants used the app for shorter timeframes compared to the pre-defined benchmarks. CONCLUSIONS We noted high feasibility and acceptability with WYZ. Further research to examine the efficacy of WYZ will enable YLWH and their providers to make informed decisions when using, recommending, and prescribing it for improved engagement in HIV care and ART adherence. CLINICALTRIAL NCT03587857

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