scholarly journals Adolescent/Young Adult Self-Management Framework: Preliminary Results and Practice Implications

2016 ◽  
Vol 22 (3) ◽  
pp. S471-S472
Author(s):  
Caroline F. Morrison
2018 ◽  
Author(s):  
Jennifer L. Lee ◽  
Gunan R. Ganju ◽  
Jordan G. Marchak ◽  
Ronica Nanda ◽  
Mehul M. Shah ◽  
...  

2019 ◽  
Vol 5 (1) ◽  
Author(s):  
Eline Bouwman ◽  
Rosella P. M. G. Hermens ◽  
Nicole M. A. Blijlevens ◽  
Judith B. Prins ◽  
Jacqueline J. Loonen

Abstract Background Successful cancer treatment can lead to cancer survivors being predisposed to an increased lifelong risk of adverse late health effects. Therefore, high-quality cancer survivorship care to earlier detect and treat late effects or to preserve survivor’s health is essential. Nevertheless, this care needs to be sustainable and cost-effective as well. We developed three different screen-to-screen nurse-led eHealth interventions for survivors of childhood, adolescent and young adult-onset cancer, collectively called the REVIVER interventions. Elaborating on person-centred care principles with content based on cognitive behavioural therapy modules and/or motivational interviewing techniques, these interventions aim to empower and coach survivors to improve (1) symptoms of cancer-related fatigue, (2) self-efficacy and self-management or (3) lifestyle. With the REVIVER study, we aim to evaluate the interventions’ feasibility and gain insights into the potential effectiveness. Methods The REVIVER study involves a mixed methods design, including (1) interviews till data saturation with cancer survivors who completed the interventions as well as with all involved medical professionals, (2) reviews of nurses reports and (3) a single-group, pre-post evaluation among cancer survivors. Eligible survivors are survivors of childhood, adolescent and young adult-onset cancer who are referred to one of the interventions, in complete remission of cancer, 16–44 years old at enrolment, completed treatment at least 5 years ago and have access to a device with Internet options. We will assess feasibility in terms of demand, adherence, acceptability, practicality and integration/implementation. Health-related quality of life, as primary outcome of the potential effectiveness evaluation, will be assessed at three different time points: prior to the intervention; immediately following the intervention and 6 months post-intervention. Secondary outcome measures include changes in level of fatigue, self-efficacy, self-management and lifestyle. Discussion This is the first study to evaluate the feasibility and potential effectiveness of eHealth nurse-led interventions elaborating on person-centred care, using cognitive behavioural therapy and/or motivational interviewing techniques as an innovative and promising approach for providing CAYA cancer survivorship care. If the interventions prove to be feasible and potential effective, a randomized controlled trial will be conducted to test the (cost)-effectiveness.


Author(s):  
Marco Fagiani ◽  
Marco Severini ◽  
Stefano Squartini ◽  
Lucio Ciabattoni ◽  
Francesco Ferracuti ◽  
...  

Author(s):  
Ana Paula Barbosa ◽  
Mario Rui Mascarenhas ◽  
C. Godinho ◽  
D. Madureira ◽  
I. Rodrigues ◽  
...  

Blood ◽  
2010 ◽  
Vol 116 (21) ◽  
pp. 4749-4749
Author(s):  
William Wood ◽  
Sarah Wright ◽  
Anne Stephens ◽  
Sheila Santacroce ◽  
Julie Blatt ◽  
...  

Abstract Abstract 4749 Background: That pediatric, adolescent and young adult cancers have become compatible with long term survivorship in the majority of cases has meant a growing emphasis on an understanding of the late effects of treatment. Among the barriers to successful health self-management in the context of transition of care from pediatricians to internists is the challenge of finding adult health care providers in the community who are comfortable caring for patients in this age group. We have developed a curriculum relating to different aspects of AYA survivorship for oncology and primary health care trainees who may come across AYA cancer survivors in the course of usual practice. Focus groups were used to refine the modules before the current application. Aim: To improve provider knowledge of AYA survivorship issues and management in a university setting. Methods: Using a combination of review articles, original research, and published guidelines for cancer survivorship, 8 teaching modules (power point presentations of 8–15 slides each) were developed: health care self-management; bone health; cardiac late effects; fertility late effects; neurocognitive late effects; psychosocial late effects; pulmonary late effects; and second malignancies. Modules were refined with the use of provider focus groups. These recently have been made available to trainees at UNC: (pediatrics [P], medicine-pediatrics [MP], medicine [M], medical hematology oncology [MHO], pediatric hematology oncology [PHO], and nurse practitioner students [NP]) in hard copy and on departmental websites. Computerized pre- and post-tests were developed for each module to assess content acquisition and will be required of the ~6 trainees/month rotating through the Survivors Clinics or on inpatient or outpatient services. At the end of each module, participants also are being asked, using a 3 point scale (agree [3], neutral [2], disagree [1]) if they feel the sessions gave them increased confidence in following AYA survivors. Participants also will be given the opportunity to critique the modules. Results: Preliminary results will not be available until December. However, enthusiasm among the target audience during the first 2 months of this program has been strong. Conclusion: Short teaching modules can be developed to engage trainees in AYA late effects issues. Ongoing work is being done to assess the effectiveness and usefulness of the modules for providers at UNC who care for adolescent and young adult cancer survivors. We anticipate that this approach will be expanded to our outreach practices. Parallel modules are in development for AYA survivors and their families. *With support from a 2009 ASH Alternative Training Pathway Grant, T. Shea, PI. Disclosures: No relevant conflicts of interest to declare.


2015 ◽  
Vol 19 (4) ◽  
pp. 579-596 ◽  
Author(s):  
Lemi Baruh ◽  
Mihaela Popescu

This article looks at how the logic of big data analytics, which promotes an aura of unchallenged objectivity to the algorithmic analysis of quantitative data, preempts individuals’ ability to self-define and closes off any opportunity for those inferences to be challenged or resisted. We argue that the predominant privacy protection regimes based on the privacy self-management framework of “notice and choice” not only fail to protect individual privacy, but also underplay privacy as a collective good. To illustrate this claim, we discuss how two possible individual strategies—withdrawal from the market (avoidance) and complete reliance on market-provided privacy protections (assimilation)—may result in less privacy options available to the society at large. We conclude by discussing how acknowledging the collective dimension of privacy could provide more meaningful alternatives for privacy protection.


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