The changing nature of social support for adolescents and young adults with cancer

2019 ◽  
Vol 43 ◽  
pp. 101667
Author(s):  
Robyn McNeil ◽  
Mette Egsdal ◽  
Sarah Drew ◽  
Maria C. McCarthy ◽  
Susan M. Sawyer
2015 ◽  
Vol 45 (4) ◽  
pp. 414-427 ◽  
Author(s):  
Kristina I. Suorsa ◽  
Christopher C. Cushing ◽  
Alexandria J. Mullins ◽  
Ellen Meier ◽  
Alayna P. Tackett ◽  
...  

2020 ◽  
Vol 72 (1-3) ◽  
Author(s):  
Kumarashwaran Vadevelu

ABSTRACT This mixed-method study analysed the impact of the transition of transgender adolescents and young adults on their social support systems as well as its consequences in the Provinces of Pattani, Yala, and Narathiwat, Southern Thailand. With the aid of open-ended, semi-structured questionnaires, interviews were conducted focussed on how they had experienced their sexual identity, the levels of their feminine, inner selves, the different ways in which they expressed their femininity, the ages at which they had started transitioning, and the unique consequences of their transitioning in society. Content analysis identified the themes and sub-themes that emerged from the data analysis. The research concluded that transitioning had negative effects on the lives of respondents and on the social support systems which they had relied on for acceptance, recognition, inclusion in society, and for ongoing help in addressing adjustment challenges. The study recommended ways whereby acceptance of and social support for transitioning adolescents and young adults might be advanced.


10.2196/10921 ◽  
2019 ◽  
Vol 7 (3) ◽  
pp. e10921 ◽  
Author(s):  
Elizabeth Donovan ◽  
Sarah R Martin ◽  
Laura C Seidman ◽  
Lonnie K Zeltzer ◽  
Tara M Cousineau ◽  
...  

Iproceedings ◽  
2017 ◽  
Vol 3 (1) ◽  
pp. e25
Author(s):  
Elizabeth Donovan ◽  
Lonnie Zeltzer ◽  
Noah Federman ◽  
Tara Cousineau ◽  
Laura Payne ◽  
...  

2018 ◽  
Author(s):  
Elizabeth Donovan ◽  
Sarah R Martin ◽  
Laura C Seidman ◽  
Lonnie K Zeltzer ◽  
Tara M Cousineau ◽  
...  

BACKGROUND Approximately 70,000 adolescents and young adults (AYA) are diagnosed with cancer each year in the United States. Sarcomas carry a particularly high symptom burden and are some of the most common cancers among AYA. Recent work has documented significant levels of unmet needs among AYA with cancer, particularly the need for psychosocial support. Mobile technology may be a cost-effective and efficient way to deliver a psychosocial intervention to AYA with cancer and cancer survivors. OBJECTIVE The two aims of this study were to (1) develop a pilot version of a mobile-based mindfulness and social support program and (2) evaluate program usage and acceptability. An exploratory aim was to examine change in psychosocial outcomes. METHODS Thirty-seven AYA with sarcoma or sarcoma survivors, parents, and health care providers participated in the study. Semistructured interviews were conducted with 10 AYA, parents of five of the adolescents, and six health care providers. Themes from the interviews helped to inform the development of a mobile-based mindfulness pilot program and a companion Facebook-based social support group. Twenty AYA consented to participate in a single-arm pre-post evaluation of the program; 17 downloaded the app and joined the Facebook group. Seven of these participants had participated in the semistructured interviews. Six additional health care providers consented to participate in the evaluation stage. RESULTS On average, participants completed 16.9 of the 28 unique sessions and used the mindfulness app for a mean 10.2 (SD 8.2) days during the 28-day evaluation period. The majority of participants (16/17) engaged in the social group and posted at least one reply to the moderator’s prompts. The mean number of responses per person to the moderator of the social group was 15.2 of 31 (49%, range 0%-97%). Both AYA and health care providers responded positively to the Mindfulness for Resilience in Illness program and offered useful recommendations for improvements. Exploratory psychosocial analyses indicated there were no significant differences from pretest to posttest on measures of perceived social support, mindfulness, body image, or psychological functioning. CONCLUSIONS This study offers preliminary support for the feasibility and acceptability of a mobile-based mindfulness and Facebook-based social support program for AYA with sarcoma. The feedback from AYA and health care providers will assist in creating a fully developed intervention. CLINICALTRIAL ClinicalTrials.gov NCT03130751; https://clinicaltrials.gov/ct2/show/NCT03130751


2021 ◽  
Vol 3 ◽  
Author(s):  
Aima A. Ahonkhai ◽  
Leslie J. Pierce ◽  
Samuel Mbugua ◽  
Benjamin Wasula ◽  
Samuel Owino ◽  
...  

Background: HIV is the leading cause of death for youth in Sub-Saharan Africa (SSA). The rapid proliferation of smart phones in SSA provides an opportunity to leverage novel approaches to promote adherence to life-saving antiretroviral therapy (ART) for adolescents and young adults living with HIV (AYA-HIV) that go beyond simple medication reminders.Methods: Guided by the Integrate, Design, Assess and Share (IDEAS) framework, our multidisciplinary team developed a peer-based mHealth ART adherence intervention—PEERNaija. Grounded in Social Cognitive Theory, and principles of contingency management and supportive accountability, PEERNaija delivers a multi-faceted behavioral intervention within a smartphone application to address important obstacles to adherence.Results:PEERNaija was developed as a gamified Android-based mHealth application to support the behavioral change goal of improving ART adherence among AYA-HIV within Nigeria, a low- and middle- income country (LMIC). Identified via foundational interviews with the target population and review of the literature, key individual (forgetfulness and poor executive functioning), environmental (poor social support) and structural (indirect cost of clinic-based interventions) barriers to ART adherence for AYA-HIV informed application features. Further informed by established behavioral theories and principles, the intervention aimed to improve self-efficacy and self-regulation of AYA-HIV, leverage peer relationships among AYA to incentivize medication adherence (via contingency management, social accountability), provide peer social support through an app-based chat group, and allow for outreach of the provider team through the incorporation of a provider application. Gamification mechanics incorporated within PEERNaija include: points, progress bar, leaderboard with levels, achievements, badges, avatars and targeted behavior change messages. PEERNaija was designed as a tethered mobile personal health record application, sharing data to the widely deployed OpenMRS electronic health record application. It also uses the secure opensource Nakama gamification platform, in line with Principles of Digital Development that emphasize use of opensource systems within LMICs.Conclusions: Theory-based gamified mHealth applications that incorporate social incentives have the potential to improve adherence to AYA-HIV. Ongoing evaluations of PEERNaija will provide important data for the potential role for a gamified, smartphones application to deliver multifaceted adherence interventions for vulnerable AYA-HIV in SSA.


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