Identifying, Recruiting, and Enrolling Adolescent Survivors of Childhood Cancer into a Randomized Controlled Trial of Health Promotion: Preliminary Experiences in the Survivor Health and Resilience Education (SHARE) Program

Tercyak, Kenneth P.; Donze, Jessica R.; Prahlad, Sowmya; Mosher, Revonda B.; Shad, Aziza

doi:10.1093/jpepsy/jsj013

Cited by 33 publications

(28 citation statements)

References 26 publications

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“…29 Research examining knowledge about clinical trials among children and adolescents has delineated a lack of understanding of what clinical trials are, the difference between clinical versus nonclinical research treatments, and incorrect assumptions about the level of invasiveness of clinical trial interventions compared with standard treatments. 30,31 Misinformation and a lack of awareness may also be the result of poor readability, understandability, and clarity of consent forms used in child and adolescent cancer research and clinical trials. 32,33 A medical provider' s knowledge of available clinical trials and communication about clinical trial information can also affect an adolescent' s awareness level.…”

Section: Information Knowledge and Awareness About Clinical Trialsmentioning

confidence: 99%

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Psychosocial Barriers and Facilitators to Clinical Trial Enrollment and Adherence for Adolescents With Cancer

et al. 2014

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have not experienced the same survival gains as children and older adults diagnosed with cancer. Poor clinical trial enrollment and adherence rates among adolescents may account for some of this disparity. Although biological, regulatory, systemic, and practice-related challenges to clinical trial enrollment and adherence have been examined, studies of psychosocial factors, which can serve as barriers or facilitators to enrollment and adherence, are limited. To bring attention to these psychological factors, we reviewed existing literature on psychosocial barriers and facilitators that can affect an adolescent' s decision to enroll and adhere to a clinical trial. We also provide potential strategies to address psychosocial factors affecting clinical trial accrual and adherence. Pediatrics

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Section: Information Knowledge and Awareness About Clinical Trialsmentioning

confidence: 99%

“…22 One study examining adolescent cancer survivor enrollment in randomized controlled trials reported that a lack of time and proximity to the treatment site were primary reasons for refusal of participation. 31 …”

Section: Sociodemographic Factorsmentioning

confidence: 99%

Psychosocial Barriers and Facilitators to Clinical Trial Enrollment and Adherence for Adolescents With Cancer

et al. 2014

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“…Hinds et al (2006) pointed out that AYAs with cancer, similar to most individuals in this age group, are active users of Web-based technology and the use of chat rooms and other discussion forums to describe their experiences with cancer. Researchers involved with childhood cancer survivors recognized the need to use technology for meeting the long-term needs of childhood cancer survivors (Dalton, 2005; Tercyak et al, 2006). Internet-based clinical trials are now considered feasible (McAlindon, Formica, Kabbara, LaValley, & Lehmer, 2003).…”

Section: Study Protocolmentioning

confidence: 99%

“…Survivors of pediatric cancer are a challenging clinical population to recruit and retain as research participants (Hinds, Burghen, Haase, & Phillips, 2006; Patenaude & Kupst, 2005; Smith & Hare, 2004; Tercyak, Donze, Prahlad, Mosher, & Shad, 2006). The recruitment and retention of older adolescent and young adult (AYA) childhood cancer survivors for research studies may be even more challenging because of their developmental stage, lifestyle characteristics, and less frequent contact with pediatric oncology centers (Tercyak et al, 2006).…”

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confidence: 99%

Recruitment and Retention of Older Adolescent and Young Adult Female Survivors of Childhood Cancer in Longitudinal Research

Cantrell

Conte

Hudson

et al. 2012

Oncology Nursing Forum

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Purpose/Objectives To describe the challenges encountered in the recruitment and retention of a sample of older adolescent and young adult female survivors of childhood cancer for a longitudinal study testing a targeted psychosocial intervention aimed at enhancing hope. Data Sources Published literature on constructing longitudinal intervention studies and strategies in the recruitment and retention of childhood cancer survivors in research was used to develop the protocol of this study. Data Synthesis Using empirical literature to construct the study’s design resulted in achieving certain goals for the design, but not in the recruitment and retention of study participants. Using online technology to deliver the intervention and collect data was efficient and effective. Traditional approaches to recruitment and retention of those survivors, however, were not effective. Use of more novel approaches to enroll study participants demonstrated only modest success. Conclusions Additional research is needed on strategies to successfully recruit and retain older adolescents and young adult female survivors of childhood cancer in longitudinal intervention studies. Implications for Nursing The improvement in the psychological well-being of female survivors of childhood cancer remains an important outcome in ongoing care. The need to continue to identify creative and effective ways to recruit and retain those survivors is warranted.

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“…Most research on resilience has focused on particular groups who have experienced particular trauma, for example during childhood (Castro, Garfinkle, Naranjo, Rollins, Brook, & Brook, 2007;Ireland, Weisbart, Dubowitz, Rowe, & Stein, 2010;Tercyak, Donze, Prahlad, Mosher, & Shad, 2006) and adolescence (Ali, Dwyer, Vanner, & Lopez, 2010;Brown, 2001;Velleman, Templeton, & Copello, 2005). However, while extremely important, this work has limited applicability for understanding resilience (and developing appropriate policy responses) across wider communities.…”

Section: The Concept Of Resiliencementioning

confidence: 99%

Additive and subtractive resilience strategies as enablers of biographical reinvention: A qualitative study of ex-smokers and never-smokers

Ward

Muller

Tsourtos

et al. 2011

Social Science & Medicine

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Additive and subtractive resilience strategies as enablers of biographical reinvention: a qualitative study of ex-smokers and never-smokers AbstractThe notion of developing resilience is becoming increasingly important as a way of responding to the social determinants of poor health, particularly in disadvantaged groups. It is hypothesized that resilient individuals and communities are able to "bounce back" from the adversities they face. This paper explores the processes involved in building resilience as an outcome in relation to both quitting smoking and never smoking. The study involved 93 qualitative, oral-history interviews with participants from population groups with high and enduring smoking rates in Adelaide, Australia, and was essentially interested in how some people in these groups managed to quit or never start smoking in the face of adversities, in comparison to a group of smokers. Our key findings relate to what we call additive and subtractive resilience strategies, which focus on the practices, roles and activities that individuals either "took on" or "left behind" in order to quit smoking or remain abstinent. The theoretical lenses we use to understand these resilience strategies relate to biographical reinforcement and biographical reinvention, which situate the resilience strategies in a broader "project of the self", often in relation to attempting to develop "healthy bodies" and "healthy biographies".

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Identifying, Recruiting, and Enrolling Adolescent Survivors of Childhood Cancer into a Randomized Controlled Trial of Health Promotion: Preliminary Experiences in the Survivor Health and Resilience Education (SHARE) Program

Cited by 33 publications

References 26 publications

Psychosocial Barriers and Facilitators to Clinical Trial Enrollment and Adherence for Adolescents With Cancer

Psychosocial Barriers and Facilitators to Clinical Trial Enrollment and Adherence for Adolescents With Cancer

Recruitment and Retention of Older Adolescent and Young Adult Female Survivors of Childhood Cancer in Longitudinal Research

Additive and subtractive resilience strategies as enablers of biographical reinvention: A qualitative study of ex-smokers and never-smokers

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